Faculty of Social and Life SciencesNursing Science

DISSERTATION

Karlstad University Studies2007:33

Reidun Hov

Nursing care for patients on the edge of life

Nurses’ experiences related to withholding or withdrawing curative treatment, in the

contexts of ICU and nursing home

Karlstad University Studies

2007:33

Reidun Hov

Nursing care for patients on the edge of life

Nurses’ experiences related to withholding or withdrawing curative treatment, in the

contexts of ICU and nursing home

Reidun Hov. Nursing care for patients on the edge of life - Nurses’ experiences related to withholding or withdrawing curative treatment, in the contexts of ICU and nursing home

DISSERTATION

Karlstad University Studies 2007:33ISSN 1403-8099 ISBN 978-91-7063-136-8

© The author

Distribution:Faculty of Social and Life SciencesNursing ScienceSE-651 88 KarlstadSWEDENforlag@kau.se +46 54-700 10 00

www.kau.se

Printed at: Universitetstryckeriet, Karlstad 2007

Abstract

Nursing care for patients on the edge of life. Nurses’ experiences related to withholding or withdrawing curative treatment, in the contexts of ICU and nursing home. Aim: The overall aim of this thesis was to deepen the understanding of nursing care for seriously ill patients on the edge of life in intensive care unit (ICU) and nursing home when questions were raised whether to withhold or withdraw curative treatment. Method: All studies were conducted in a qualitative frame of reference with interviews of nurses in two contexts in Norway; group interviews of 14 nurses in an ICU (study I, III), and individual interviews of 14 nurses in two nursing homes (study II, IV). Data were analysed with interpretative phenomenology (I, III, IV) and phenomenography (II). Findings: The nurses’ descriptions of the patients on the edge of life were interpreted as ‘being in a twilight zone’, a state between living and dying. The patients’ situation were understood to be very burdensome as they were mostly ‘voiceless’ and unable to call for, or refuse help and totally surrendered to other people’s devices. Their state was strained by extensive suffering; pains and bodily afflictions, loneliness, confusion and without control and dignity (I). Their need for nursing care was comprehensive (I, II) with an overall need for dignity (II), which included having the needs for preparedness, human relationship, comfort and safety met (II). The patients’ inabilities to express themselves clearly involved major challenges for nursing care (I - IV). Good nursing care was described as caring for the individual patient based on his/her situation and needs. The nurses experienced themselves to be of imperative importance for the patient’s living or dying (III, IV) and their interpretation of the patient’s condition was crucial (III). Their commitment and drive to help was high, they knew what good nursing care was for the patients (I - IV), and they were proud when they succeeded in their care (III, IV). An outstanding finding was the nurses’ experiences of ambiguity of both certainty and uncertainty. Being certain mostly seemed to concern nursing care related to the patient’s needs and situation (I, II), and uncertainty to what was ‘right’ to do with regards to withholding or withdrawing treatment (III, IV). They often experienced loneliness, too much responsibility, a vulnerable professional pride, and being pulled between opposite poles when they struggled to give good nursing care (I - IV), but too often they failed (II, IV). This demanding situation sometimes led to the nurses’ use of several self-protecting strategies. Whether the patients could receive good nursing care or not did not only depend on the single nurse, but was also anchored in opportunities and hindrances on a relational and an organisational level (I – IV). There were many congruities in patterns in the experiences of ICU - and nursing - home - nurses with regards to the situation and needs of patients on the edge of life, and good nursing care. Congruities were also found regarding being a nurse when caring for these patients, and nurses’ opportunities and hindrances for carrying out good nursing care. Conclusion: This thesis shows that nursing care was experienced as being of crucial importance to the patients on the edge of life, and the nurses knew very well what good nursing care was for them. However, the nurses’ opportunities to perform good nursing care depended on several preconditions and were restricted by hindrances on different levels, which have to be overcome in order to fulfil patients’ needs and nurses’ ambitions of giving good nursing care. As such, this thesis highlights a wide-ranging understanding of nursing care for these patients, which should challenge individual nurses, but also other health care workers, leaders and politicians.

Key words: Life - sustaining treatment, nursing care, nursing home, ICU, phenomenology, phenomenography.

Norsk oppsummering

Sykepleie til pasienter som svever mellom liv og død. Sykepleieres opplevelser i intensiv og sykehjem når det reises spørsmål om å holde tilbake eller avbryte kurativ behandling. Hensikt: Avhandlingens overgripende hensikt var å utdype forståelsen for sykepleie til pasienter som svever mellom liv og død der det reises spørsmål om å holde tilbake eller avbryte kurativ behandling. Metode: Data ble samlet gjennom gruppeintervjuer av 14 sykepleiere i én intensivavdeling i Norge (studie I, III) og individuelle intervjuer av 14 sykepleiere fra to norske sykehjem (studie II, IV). Data ble analysert gjennom fortolkende fenomenologi (I, III, IV), og fenomenografi (II). Funn: Slik sykepleierne beskrev pasientene, er de tolket som å være i en ‘twilight zone’ som i denne avhandlingen betegner en mellomfase mellom liv og død. Belastningene på pasientene var store; de var som regel helt hjelpeløse, ute av stand til tydelig å be om eller nekte hjelp, og deres fortsatte liv eller død og velbefinnende var totalt avhengig av andre (I - IV). Intensivpasientene ble beskrevet med store og omfattende lidelser; smerter og mange kroppslige plager, forvirring, ensomhet og tapt kontroll og verdighet (I). Alle pasientene hadde et omfattende behov for sykepleie (I, II), og verdighet var et overordnet behov (II). Verdighet inkluderte at pasientene fikk imøtekommet behovet for å være forberedt på det som skulle komme, være i relasjon med mennesker som betydde noe for dem og for velvære og sikkerhet (II). Utøvelsen av god sykepleie var basert på pasientens situasjon og behov, men fordi pasienten ofte ikke greide å uttrykke det klart var sykepleiens utfordringer store (I, II). Sykepleierne opplevde yrkesstolthet over å kunne hjelpe pasienten i en av dens mest sårbare perioder i livet, og de hadde et stort engasjement og sterk forpliktelse til å hjelpe den enkelte. De så seg selv som nøkkelpersoner for pasientens muligheter til å overleve eller dø, og måten dette skjedde på (III, IV), og deres tolkninger av pasientens situasjon var avgjørende (III). Et fremstående funn var sykepleiernes opplevelse av tvetydighet: de følte seg ofte sikre på hva som var best og riktig for pasienten, men samtidig opplevde de en konstant usikkerhet i forhold til hva som var riktig når det gjaldt å holde tilbake eller avbryte behandling (I – IV). Mens de strevde for å utøve god sykepleie opplevde de ofte ensomhet, for stort ansvar og å bli dratt mellom motsetningsfylte interesser (III, IV). De opplevde seg som profesjonelle når de ga god sykepleie, men de kom ofte til kort (III, IV). Den krevende situasjonen førte noen ganger til at sykepleierne trengte beskyttelse, og de benyttet ulike selvbeskyttende strategier (III, IV). Sykepleierne visste godt hva god sykepleie var for pasientene (I, II), men hvorvidt de lyktes var ikke bare avhengig av den enkelte sykepleier, men også av muligheter og hindringer på et relasjonelt og organisatorisk plan (I - IV). Det var flere likhetstrekk i sykepleiernes erfaringsmønstre i intensivavdelingen og på sykehjemmene relatert til hva de beskrev som pasientenes situasjon, behov og god sykepleie. Likhetstrekk ble også funnet i sykepleiernes opplevelser av å gi sykepleie til disse pasientene, samt muligheter og hindringer for å kunne utøve god sykepleie. Konklusjon: Denne avhandlingen viser at sykepleierne visste godt hva god sykepleie var for pasienter i ‘twilight zone’, og sykepleie ble beskrevet som avgjørende for hvordan denne fasen ble, og for pasientenes liv eller død. Sykepleiernes muligheter til å utøve god sykepleie var forankret i forutsetninger og hindringer på ulike nivåer. Avhandlingen viser at det er nødvendig med en vid forståelse av sykepleie til denne pasientgruppen, og fokuserer de omfattende utfordringene for den enkelte sykepleier, men også for annet helsepersonell, ledere og politikere.

Nøkkelord: Livsoppholdende behandling, sykepleie, intensivsykepleie, sykehjem, fenomenologi, fenomenografi.

Livet er nå,

fortiden har vært,

og fremtiden er ennå ikke her

(Tove Virata Bråthen)

Table of contents

Original papers 2

Introduction 3

Background 4 On the edge of life 4

The care for patients on the edge of life in ICU 4 The context 4 The patients 5 What good nursing care is or is not 5

The care for patients on the edge of life in nursing home 6 The context 6 The patients 6 What good nursing care is or is not 7

Withholding and withdrawing curative treatment 8 Legal issues related to withholding or withdrawing curative treatment 8 Ethical issues related to withholding or withdrawing curative treatment 9 Withholding or withdrawing curative treatment in ICU and nursing home 9

Nurses’ situation in the care for patients on the edge of life 10 Being an ICU nurse 10 Being a nurse in nursing homes 11

Rationale for the study 12

Overall and specific aims 13

Methodology and methods 14 Research design 14

Phenomenology (I, III, IV) 15 Phenomenography (II) 15 The relation between phenomenology and phenomenography 16

Settings 16

Participants 17

Data collection 18 Group interviews (I and III) 18 Individual interviews (II and IV) 18

Data analysis 19 The phenomenological analysis 19 The phenomenographic analysis 20

Trustworthiness 20

Ethical considerations 21

Main findings 22 Patients on the edge of life in ICU (I) and nursing home (II) – their situation and needs 22

Good nursing care for patients on the edge of life in ICU (I) and nursing home (II) 23

Being a nurse in ICU (III) and nursing home (IV) when questions are raised whether to withhold or withdraw curative treatment 24

Opportunities and hindrances to achieve good nursing care in ICU (I, III) and nursing home (II, IV) 26

Comprehensive understanding of the findings (fig I) 29

Discussion 31 Good nursing care for the individual patient on the edge of life 31

The meaning of being a nurse for patients on the edge of life 33

Opportunities and hindrances to carrying out good nursing care 35

Methodological considerations 39

Conclusions 42

Further research 42

Acknowledgements 45

References 46

Study I - IV

Original papers

This thesis is based on the following papers, which will be referred to in the text by their Roman numerals.

I. Hov, R., Hedelin, B., & Athlin, E. Good nursing care for ICU patients on the edge of life. Intensive and Critical Care Nursing. (Accepted for publication).

II. Hov, R., Hedelin, B., & Athlin, E. Good nursing care and its hindrances for patients between being seriously ill and dying in nursing homes – a phenomenographic study. International Journal of Nursing Studies. (Submitted).

III. Hov, R., Hedelin, B., & Athlin, E. (2007). Being an intensive care nurse related to questions of withholding or withdrawing curative treatment. Journal of Clinical Nursing, 16, 203-211.

IV. Hov, R., Athlin, E., & Hedelin, B. Nurses’ lived experiences related to nursing care in nursing homes when questions concerning life-sustaining treatment or not were raised. Scandinavian Journal of Caring Sciences (Submitted).

Reprints were made with kind permission from the publishers.

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Introduction

The advances in medicine and technology in the last decades have supplied the health-care system with almost unlimited opportunities to maintain patients’ lives and support them through life-threatening illness. Sometimes it is difficult to decide whether further treatment may result in a positive outcome, and for some patients the treatment seems futile. In such situations, questions whether to withhold or withdraw curative treatment often are raised (Bunch, 2001). A transition from primarily curative to primarily palliative care might be troubled with tensions and delays as the patients, families and health-care providers often have difficulties in agreeing about treatment and care decisions (Puntillo et al., 2001). This problem is aggravated by the fact that the patients are often unable to express their wishes clearly due to their severe illnesses (Prendergast & Luce, 1997; Sahlberg-Blom et al., 2000). Many studies have pointed at the consequences of ‘wrong’ treatment in end- of-life care which have been said to bring forward the moment for death, or cause unnecessary suffering due to prolonged life (Asch et al., 1997; Kayser-Jones, 2002; Seymour, 2000; Simmonds, 1996; Travis et al., 2002). There is no doubt that the physicians are responsible for medical decisions, but the decisions may impact on the nursing care as nurses have a responsibility to carry out physicians’ orders and are involved in their consequences. No matter what kind of medical treatment the patients receive, nurses’ official mandate is to give them good nursing care. As this group of patients often is unable to express their wishes and needs about their daily care (Engedal & Haugen, 1993; Luce & Prendergast, 2001; Wilkin & Slevin, 2004), the nurses have to rely on their own interpretations and judgements in order to find out what kind of nursing care can satisfy the individual patient’s needs. Caring for patients at the end of life has been described as complicated and demanding (Oberle & Hughes, 2001), since nurses are obliged to handle patients’ pain and suffering, the relatives’ worries (Soderberg & Norberg, 1993), and their own anxiety and stress (Badger, 2005a; Hamric & Blackhall, 2007; Luce & Prendergast, 2001). Even though much research has been conducted about nurses’ experiences of end-of life care, nursing research is lacking with regards to their experiences of what nursing care means to the patient and themselves when questions concerning the withholding or withdrawing of treatment are raised.

Therefore this project was carried out in a qualitative design taking its point of departure in the experiences of registered nurses (RNs). Even if there is a common agreement within the nursing community that only patients can exactly define their own needs, it is also stated that the patients’ situation and needs often have to be interpreted and described from the nurses’ perspective. The supposition is that shedding light upon nurses’ experiences regarding the topic focused in this thesis can contribute to valuable knowledge for nursing practice.

In the following, I wish to illuminate and discuss perspectives of relevance to this thesis. It has been carried out inspired by the theoretical foundation of professional nursing (Benner & Wrubel, 1989; Henderson, 1969; Paterson & Zderad, 1988). My own starting point for conducting this project was a professional wish that patients should always receive the best nursing care, whether the outcome is survival or death. My concern was also that caring for these patients is demanding for nurses, for whom it is absolutely vital to stay clear-sighted and knowledgeable.

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Background

On the edge of life

Being seriously ill is an individual experience, representing a change in which normal life is brought to an end and another kind of life of an unknown nature takes its place (van den Berg, 1966). In this thesis this is understood as a transition between living and dying with an unpredictable outcome, whether the patient’s illness leads to recovery or to dying. Cook et al. (1999) have described this period as the time where many patients need ‘to declare themselves’ by showing clearer prognostic signs whether survival is possible or death is imminent. If during this period the patient shows no progression towards recovery or if clear signs of dying appear, questions of continuing treatment or not often are raised. In this thesis this point is defined as ‘the edge of life’.

Even if seriously ill and dying patients are cared for in different places - in patients’ homes, hospices, hospitals and caring facilities such as nursing homes - most deaths still occur in hospitals (Mezey et al., 2002; Miller et al., 2001; Solloway et al., 2005). Fried et al. (1999) showed that 43 % of the patients included in the study wanted to die at home but only 19 % of them did so; the others were referred either to hospitals or other caring facilities. Studies have shown that nursing homes are increasingly responsible for dying patients as these nowadays are staying in the facility rather than being transferred to hospitals (Hanson et al., 2002; Reynolds et al., 2002). In Norway the death rate in hospitals has decreased slightly during the last decade, (from 41 % in 1992 to 40 % in 2002 out of about 44 500 deaths), whereas deaths in other caring facilities, including nursing homes, have increased (from 35 % in 1992 to 39 % in 2002) (Statbank Norway, 2004).

In order to illuminate the research questions in this thesis from a broad perspective two very disparate care contexts were chosen – adult intensive care (ICU) and nursing-home care. Research about what it is like to be a patient and what nursing care he/she receives on the edge of life in ICUs and nursing homes is scarce. The literature review that follows is therefore also based on research related to the more comprehensive concept ‘end-of-life care’. Also literature regarding ‘critically ill patients’, ‘terminal care’ and ‘palliative care’ has been scrutinized.

The care for patients on the edge of life in ICU

The context

ICU care is a service for the most sick or injured patients with potentially recoverable conditions, which means that ICUs are dedicated to saving lives. The expectation is that the patients can benefit from more detailed and intense observations and most invasive treatment than general wards can provide (Ravenscroft & Bell, 2000). Ideally, patients who are expected to die should not be admitted to ICUs, but in reality, many so-called hopelessly-ill patients are sent there (Vincent, 1999).

Most ICUs require the presence of physicians in the unit 24 hours a day, and the level of nursing staff on each shift is high (Darvas & Hawkins, 2002). Accordingly, the patients are surrounded by nurses and physicians with a high level of knowledge, who are using advanced equipment in order to monitor and handle situations of changes and emergency if a patient’s condition deteriorates.

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From the outside an ICU represents a world, which is difficult to access because entering into the ward is through closed doors and calling systems. From the inside, the unit is in a way a public space since internal walls and doors are mostly lacking, and patients’ most intimate sides of their private lives become known to a lot of passing people. An ICU ward often represents a highly-charged and often stressful environment where the noises from monitors, alarms, the hums and breaths of ventilators and the ringing of phones are mixed with noises from the staff, radio and television (Turnbull et al., 2005; Wikstrøm & Sätterlund-Larsson, 2003, 2004). To the untrained eye an ICU could be described as a picture of calm competence, but under the surface there are considerable dramas full of difficult problems (Bunch, 2001).

The patients

ICU patients’ lives often are described as extremely fragile, since living or dying to a great extent depends on the intensive treatment and support from advanced technology (Hall & Rocker, 2000). A study in the United States (US) shows that 38 % of the patients who died in hospitals spent at least ten days in an ICU (The SUPPORT Principal Investigators, 1995). Another study showed that about 20 % of the ICU patients died despite full ICU support including attempted cardiopulmonary resuscitation (CPR) (Prendergast et al., 1998).

The burdens and distress for critically ill ICU patients are shown to be comprehensive, and apart from the severe illness per se, these can be related to the ICU environment and special treatment and care. Granberg et al. (1998) found that the patients experienced a sort of chaos and an inner tension, which could be exacerbated by the most trivial events in circumstances or routines. It has also been shown that patients’ heightened and often long-lasting tension between anxiety and loss of control made them susceptible to developing the ICU syndrome, which is characterised by confusion, sleep disturbances, nightmares and fantasies (Granberg Axell, 2001; Hewitt, 2002). Furthermore, studies among critically ill ICU patients have shown a high frequency of communication problems due to sedation or ventilator treatment (Gjengedal, 1994; Granberg et al., 1998), and time disorientation (Gjengedal, 1994). It is highlighted that even if a large number of critically ill ICU patients have little or no memories from their ICU stay (Granberg et al., 1998; Russell, 1999), patients who have been unconscious sometimes remember fragments from this period, which could be comfortable, but also upsetting experiences (Lawrence, 1995).

What good nursing care is or is not

Studies about end-of-life care for ICU patients are often conducted from the perceptions of health professionals and relatives, and most of them do not focus specifically on nursing care. However, as nursing care is a part of end-of-life care and palliative care (Davies & Higginson, 2004) these studies often give valuable information also about what good nursing care is or is not.

Nurses have described their views on end-of-life ICU care in several studies, which show their emphasis on relief of patients’ pains (Beckstrand et al., 2006; Kirchhoff et al., 2000; McClement & Degner, 1995; Puntillo et al., 2001). A common theme for some studies was the maintenance of patients’ dignity (Kirchhoff & Beckstrand, 2000; Soderberg et al., 1997) and comfort (Kirchhoff et al., 2000; McClement & Degner, 1995). Showing empathy and respect was also highlighted (McClement & Degner, 1995). Continuity of care and cooperation with the individual patient, relatives, and among health professionals have also been underlined as good nursing care in several studies, as well as promoting earlier cessation of treatment or not initiating aggressive treatment (Coombs & Ersser, 2004; Heyland et al., 2000; Kirchhoff & Beckstrand, 2000; Kirchhoff et al., 2000). Furthermore, a good death has been described as no

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unnecessary prolongation of life and no hastening of death. Puntillo et al (2001) conducted a survey among nurses (n= 906), showing that about half of the respondents considered that interventions were sometimes prolonged beyond what was reasonable. According to Chapple (1999) a good death can also be understood in the light of its opposites: no communication, no choices, too much pain and prolonged aggressive treatment.

Little research was found about end-of-life care from the patients’ perspective. However, the study by Levy et al. (2005) about quality of dying and death in the ICU described by nurses, patients, physicians and relatives, shows that nurses and patients rated the dying process less favourably than relatives and physicians did. End-of-life care for ICU patients has also been studied from the perspective of relatives (Heyland et al., 2003; Mularski et al., 2005), where satisfaction with the quality of care was expressed with regards to communication, good decision-making, respect and compassion from the health-care providers (Heyland et al., 2003). However, they have also pointed out areas for improvements with regards to symptom relief and avoidance of aggressive treatment as well as comforting care (Mularski et al., 2005).

Even though these studies about critically ill patients and end-of-life care are not related to situations when the question is whether to withhold or withdraw curative treatment, they give some ideas about what good nursing care and its obstacles may be when caring for patients on the edge of life in ICUs.

The care for patients on the edge of life in nursing home

The context

Nursing homes are places where mainly older people are given care and to a certain extent also medical treatment. In Norway, nursing homes are facilities within the responsibility of communities for older people who are unable to stay in their own homes. A nursing home represents many patients’ home, and the institutions are designated to arrange for a home-like environment, so that patients’ privacy and social relations can be maintained. Nursing care services and personal care are available ‘around the clock’, characterised by a low number of RNs and many nurse assistants (Leppa, 2004), and limited time for the physicians, who are responsible for the medical treatment (Travis et al., 2002; Vohra et al., 2006; Wetle et al., 2005). Staff turnover has been reported as a widespread and serious problem in nursing homes (American Health Care Association, 2002).

The care in nursing homes in Norway is regulated by a ‘Regulation of quality of care’ (MEDLEX, 2006), which describes the services that should be provided by the community. Some nursing homes have beds for palliative care, temporary stay, rehabilitation, and intermediate stay, which also include curative treatment, and most of them also have units for patients with dementia.

The patients

In nursing homes the patients’ health conditions are complex (Sandman & Wallblom, 1996). Three groups of patients are described in nursing homes: patients who are admitted for rehabilitation and are expected to be discharged back to their homes, terminally ill patients who are expected to die within a short time and chronically ill and functionally disabled patients who usually spend the rest of their lives in a nursing home (Wunderlich et al. 1996). For the last group, the patients’ maintenance or improvement of their functional status is the overall goal, but

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declination and death are inevitable outcomes (Forbes, 2001), and their phase of decline could span over months or years of care (Leppa, 2004).

The patients in Norwegian nursing homes have on average four medical diagnoses each that need to be followed up by physicians (The Norwegian Medical Association, 2005). In addition 50 – 70 % of the patients are more-or-less demented (Engedal & Haugen, 1993). Compared to other countries in Europe, Norway is reported as having the highest percentage of the population dying in nursing homes (Husebø & Husebø, 2005). In nursing homes deaths have been characterised as suddenly occurring, usually expected and sometimes also welcomed as they were caused by chronic progressive illnesses. This pattern has also been described as relatively stable periods interrupted by exacerbations and abrupt deaths, because the chronic illness trajectory disguised the dying process (Covinsky et al., 2003; Forbes, 2001; Hanson et al., 2002; Teno & Coppola, 1999). This means that many patients in nursing homes may die without being identified as being on the edge of life, or as terminally ill, which according to Bartholome (1999) could give them the opportunity to readjust priorities, restore relations and prepare for dying.

What good nursing care is or is not

Several studies focus on end-of-life care in nursing homes, but even if these findings are not especially related to nursing care, they may show areas of concern for nurses. In a review of the literature, Bosek et al. (2003) have illuminated the end-of-life care by delineating ‘a good death’ for patients in nursing homes. Six themes were identified: management of pains and symptoms, clear decision making and open communication with health-care workers, knowledge about what could be expected, completion of life, contributing to relatives’ and caregivers’ well-being, and affirmation of the whole person, which involved empathetic care from a caregiver. These themes were well in accordance with other studies in which quality of end-of-life care is described as containing advanced care planning and appropriate decisions, spiritual and psychosocial care and access to palliative care (Bradley et al., 1998; Hallenbeck, 2000; Wilson & Daley, 1999). Sloane et al. (2003), who studied the current state of end-of-life care in residential care-assisted living facilities and nursing homes, found that the overall comfort of the patients was quite good, but least good in the nursing homes.

Even if dying in nursing homes in a study of Hanson et al. (2002) has been characterised as a peaceful acceptance with little physical pain and other symptoms, there is quite an extensive body of research highlighting a low quality of care for these patients. Studies have reported physically uncomfortable patients with pains and respiratory problems (Forbes, 2001; Hall et al., 2002; Reynolds et al., 2002). Furthermore, agitation, restlessness, social isolation and loneliness, problems with personal hygiene, incontinence and fatigue, depressed mood and anxiety have often been noted (Forbes, 2001; Hanson et al., 2002; Reynolds et al., 2002). A study by Kayser- Jones et al. (2003) shows that patients who were unable to ask for help were lonely, did not get adequate food and help with eating, and that cognitively impaired and comatose patients were often neglected. Other studies stress that end-of-life care in nursing homes needs to be improved with regards to emotional and spiritual needs, care to ensure personal cleanliness and increased medical treatment (Kayser-Jones et al., 2003; Reynolds et al., 2002).

This literature review shows a comprehensive body of research regarding patients’ end-of-life in nursing homes, yet nursing research about seriously ill patients on the edge of life and their situation and needs in nursing homes is still scarce.

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Withholding and withdrawing curative treatment

There is some vagueness about the concepts ‘life-sustaining treatment’, ‘curative treatment’, ‘life supporting – ’ and ‘life - prolonging treatment’ concerning their meanings and borders. They seem to be used interchangeably in medical literature, especially when there is a question of withholding or withdrawing treatment for seriously ill patients (Cook et al., 2006; Prendergast et al., 1998; Sayers & Perera, 2002; Winter & Cohen, 1999). Therefore these concepts have been used interchangeably in this thesis, even though there may be some differences between them.

The use of treatment restrictions is culturally conditioned. Variations are shown from country to country and different health-care settings with regards to timing, frequency and restrictions of different kinds of treatment (Winter & Cohen, 1999). In Europe, nationality and religion seem to account for the variability in withdrawing treatment. Southern countries, where clinicians are mainly Catholic, Greek Orthodox, Jewish, and Muslim are more restrictive than in Northern-Central Europe among Protestant or agnostic physicians (Ferrand et al., 2001; Iyilikci et al., 2004; Sprung et al., 2003; Vincent, 2004). The research on the topic in Norway is scarce, but there are indications that Norwegian physicians’ are restrictive, and a study has shown that they sometimes or often could continue treatment beyond meaningfulness (Førde et al., 1997).

Withholding life-sustaining therapy is connected with a decision not to institute a ‘medically appropriate and potentially beneficial therapy, with the understanding that the patient will probably die’. Withdrawing life-sustaining therapy is the ‘cessation and removal of an ongoing medical therapy with the explicit intent not to substitute an equivalent alternative treatment; it is fully anticipated that the patient will die following the change in therapy’ (Prendergast et al., 1998, p. 1164). This includes actions that allow death to occur; they are considered justified inasmuch as the intention is to stop futile therapy in accordance with ethical codes, and it is the underlying disease process that ultimately causes death (Prendergast & Puntillo, 2002; Puntillo et al., 2001; Vincent, 2004). Often withdrawing and withholding treatment are combined in the same patient and include for instance treatment with antibiotics, cardiac defibrillation, dialysis, mechanical ventilation, surgery, vasopressors, and the administration of fluids and nutritional feedings. In nursing homes limiting of hospitalisation is also a way to restrict treatment. Withdrawing treatment demands a plan, which might include anything from withdrawal of all treatments to withdrawal of some. The period of time over which a treatment should be withdrawn is determined by the potential for discomfort for the patient (Rubenfeld & Crawford, 2001).

Legal issues related to withholding or withdrawing curative treatment

Even if the laws differ between countries concerning the legacy and rights related to withholding or withdrawing curative treatment there are some general directions. Several ways of decisions are available concerning these questions. One way, which gives the patient the opportunity to express written preferences before critical illness occurs, is advanced directives (ADs), which include living wills and durable power of attorney for health care (Kirmse, 1998). Other ways are related to physicians’ responsibility concerning resuscitative efforts, which may result in ‘do not resuscitate’ (DNR) - orders and withholding or withdrawing of life- sustaining therapies (Thelen, 2005).

In general, the patients have the legal right to request or refuse the withdrawal of medical interventions, and nurses and physicians have to respect this right (Gostin, 1997; Moselli et al., 2006; Mueller et al., 2004). This requires that patients have adequate decision – making capacity and are informed of the consequences of their requests. Studies have shown that relatively few

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patients have made their desires known while still competent by writing ADs, (Esteban et al., 2001; Ferrand et al., 2001). This seems also to be the case in Norway (Førde et al., 2002). When patients are incapable of making competent choices, the family can act as surrogates (Angell, 1991; Moselli et al., 2006). However, their role depends on the laws of the particular country (Kapp, 2003).

Norwegian law states that treatment can only be given if the patient agrees either explicitly or tacitly, but a dying patient has the legal right to refuse life-prolonging treatment and physicians are obliged to respect their wishes. If the patient is incapable of expressing his/her preferences, health personnel after professional and autonomous judgments are allowed not to give treatment if they find that the condition is irreversible and without future hope for recovery. A precondition is that relatives agree with the decision (Pasientrettighetsloven, 1999; Aasen, 2000). In Norway there are generally no written directives for how to act in such situations, except directives related to how to determine DNR in somatic hospitals, and that the decision must be documented (Helsetilsynet, 2002).

Ethical issues related to withholding or withdrawing curative treatment

Western ethicists consider that it is of little importance to distinguish between not initiating and stopping treatment because a justification of not initiating a treatment is also adequate for ceasing it. Both apply to the immediate future and the consequences will be the same (American Thoracic Society Bioethics Task Force, 1991; Winter & Cohen, 1999). As the patient’s living or dying transition might be a ‘grey-area’ (Kirchhoff et al., 2000), the crucial value of the sanctity of life with the aim of saving life might in some circumstances conflict with what may be the best for the patient at their end of life. Four ethical principles within biomedical ethical theory (Beauchamp & Childress, 2001) are frequently referred to, and might be violated when questions concerning a patient’s treatment are in focus (Vincent, 1999, 2004). These principles are also the cornerstones in nursing ethics (NSF, 2001). The principles are: beneficence, as treatment may provide no benefit to the patient; non – maleficence, as treatment may harm the patient; distributive justice, as treatment demands costs, time and energy that could be better used on other patients; autonomy, as one can assume that no-one would want to receive treatment which shortens their lives or futile therapy which prolongues their inevitable death by a few hours or days (Vincent, 2004). In the same way the use of critical care technology to prolongue dying is considered as inappropriate (Luce & Alpers, 2000; Prendergast, 2000).

Withholding or withdrawing curative treatment in ICU and nursing home

Withholding or withdrawing of life-sustaining treatment is widely practised both in ICUs and nursing homes. Studies show that 15 % to 30 % of all deaths occurred after a non-treatment decision (Bilsen et al., 2004; Groenewoud et al., 2000), and that 85 % of all treatments were ceased in hospitals and in nursing homes (Bosshard et al., 2005).

A large number of studies on withholding and withdrawing of life-sustaining treatment have been conducted in ICUs. These show that a variation of 40 – 90 % of all deaths occurred in ICUs after a decision to limit therapy (Faber-Langendoen & Bartels, 1992; Ferrand et al., 2001; Gajewska et al., 2004; Keenan et al., 1997; Nolin & Andersson, 2003; Prendergast & Luce, 1997; Sprung et al., 2003; Turner et al., 1996; Vincent, 1999, 2001; Wunsch et al., 2005). The most liberal practice is shown in the USA (about 90 %) (Prendergast & Luce, 1997) and Canada (80 %) (Hall & Rocker, 2000). Futility of care, poor prognoses and expected quality of life were shown to be the most important factors supporting the decisions to withhold or withdraw treatment, but also the patient’s age, mental status, coexisting chronic disease and the patient’s

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own request influenced the decisions (Ferrand et al., 2001; Moselli et al., 2006; Nolin & Andersson, 2003; Yazigi et al., 2005).

Restrictions in the use of curative treatments are widely practiced in nursing homes and are supposed to increase (Groenewoud et al., 2000). Most of the research is related to the withholding or withdrawal of different kinds of treatments (Wurzbach, 2002) such as hospitalisation of seriously ill and dying patients (Dobalian, 2004; Reynolds et al., 2002), the use of cardiopulmonary resuscitation (Ackermann & Kemle, 1999; Reynolds et al., 2002), and antibiotics (van der Steen et al., 2002). Also the withholding or withdrawing of artificial fluid and nutrition is widely practised in nursing homes (Onwuteaka-Philipsen et al., 2001; The et al., 2002), but there are variations among counties (Gessert & Calkins, 2001), nursing homes (Wurzbach, 2002) and in the use of treatment restrictions (Laakkonen et al., 2004; Reynolds et al., 2002; Solloway et al., 2005).

Nurses’ situation in the care for patients on the edge of life

Being an ICU nurse

ICU nurses are seen as having a prominent status vis-à-vis other nurses because they are highly educated and have a comprehensive competency (Gjengedal, 1994). Norwegian ICU nurses work autonomously when they perform basic care and carry out medical technical treatment. Their duties are manifested in ‘The Norwegian Association of Intensive Care Nurses’ (NSFLIS, 2002).

The role of ICU nurses has been found challenging and dynamic with a heavy responsibility and demands to make rapid decisions (Endacott, 1999). Research has shown that ICU nurses’ actions were highly influenced by keeping the critically ill patient alive (Wilkin & Slevin, 2004), while maintaining human contact and handling high technology (Ashworth, 1990). ICU nurses’ responsibility to provide a pain-free and peaceful death for the patients has also been shown (McClement & Degner, 1995). Teamwork and cooperation have been stressed as important in dealing with critical situations in ICUs (Wilkin & Slevin, 2004). The ICU nurses’ cooperation is wide-ranging, including patients, relatives, colleagues in the ward, anaesthetists and physicians from the patients’ primary ward such as surgeons and internists. The organisation of the nursing team has traditionally resulted in one nurse caring for one patient during a shift, which gives the individual nurse unique possibilities in their performance of nursing care (Berkhout et al., 2003; Manley et al., 1996), but has also been shown to have some negative consequences such as stress because of the closeness to the patients (Goode & Rowe, 2001).

The main problem for nurses in ICUs is shown to be end-of-life decisions (Cobanoglu & Algier, 2004; Oberle & Hughes, 2001). Withholding and withdrawing treatment have been found to dominate ICU nurses’ moral concerns; either by administering meaningess treatment (Cronquist et al., 2004) or giving too much treatment (Cronquist et al., 2004; Soderberg & Norberg, 1993) as well as performing futile care on elderly patients (Badger, 2005b). Other studies show that ICU nurses’ moral issues in the care of terminally ill patients most often are related to end-of-life decisions, giving information to patients, the relief of symptoms and the medical treatment (Bunch, 2001; Finlay, 1996; James & Field, 1996). Studies have reported that ICU nurses, when experiencing that patients were over- or under-treated, had feelings of anger, powerlessness and frustrations (Kirchhoff & Beckstrand, 2000; McClement & Degner, 1995; Schneider & Young, 1998; Storch, 2004).

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Being a nurse in nursing homes

The staffing in nursing homes is usually based on enrolled nurses and nurse assistants, with only a few RNs. This means that RNs have to work with and through colleagues, who have lower level of nursing education or are untrained in nursing care, which might influence the quality of care (Bliesmer et al., 1998; Garland & Schirm, 1998). Little time for attendant physicians is highlighted as problematic for medical assessments and treatments (Travis et al., 2002; Vohra et al., 2006). Leppa (2004), in a study among licensed staff in nursing homes illuminated that the conceived view of working in a nursing home was that it is less intellectually challenging, less physically demanding and less skilled work than working in a hospital.

Most studies about caring personnel in nursing homes have focused on nurse aides concerning burnout, low wages, low levels of personal control and feedback, job stress and job dissatisfaction, and the high rate of turnover (Black & Rubinstein, 2005; Burack & Chichin, 2001; Henry, 1993; Kennedy, 2005; Ramirez et al., 1998). Research is lacking about nurses’ experiences with regards to caring for patients when questions were in focus whether to withhold or withdraw curative treatment in nursing homes. However, one study was found (Kyba, 1990), which showed that nurses who cared for terminally ill older people identified problems related to quality of death, difficulties in deciding when to stop treatment, and the appropriateness of life-sustaining treatment as the most prominent ethical difficulties. These nurses experienced moral distress in which powerlessness and discouragement were found to be the most frequent feelings.

As reported above, much research has been conducted about ICU nurses’ working conditions and ethical issues related to withholding or withdrawing curative treatment. The research about nurses’ experiences related to these issues in nursing homes is scarce. There is a lack of research in both contexts, which specifically focus on nurses’ experiences of nursing care for patients on the edge of life.

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Rationale for the study

The literature review related to this thesis shows that a considerable number of studies are concerned with the frequency of withdrawing or withholding life-sustaining treatment, ethical dilemmas and moral distress and the quality of nursing care in ICUs. The research in nursing homes is mainly focused on the frequency of, and what kinds of treatments are withheld or withdrawn, and end-of-life care. The research has mainly focused on families’, physicians’ or the whole staff’s perspectives.

Thus there is a lack of nursing research focusing on nursing care related to patients’ situation and needs when questions are raised whether to withhold or withdraw life-sustaining treatment, based on the nurses’ experiences. Furthermore, there is a lack of studies of what it means to be a nurse for the patients in these situations. Therefore it is important to broaden the understanding and knowledge of being in this troublesome situation, both as a patient and a nurse. Hopefully, this thesis will contribute to good nursing care for patients on the edge of life.

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Overall and specific aims

The overall aim of this thesis was to deepen the understanding of nursing care for seriously ill patients on the edge of life in ICU and nursing home when questions were raised whether to withhold or withdraw curative treatment.

Specific aims were to illuminate

- the patient’s situation and needs from the nurse’s point of view (I, II) - good nursing care as described by nurses (I, II) - the meaning of being a nurse (III, IV) - nurses’ opportunities and hindrances to giving good nursing care (I - IV).

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Methodology and methods

Research design

Paradigms are the fundamental prerequisite for all scientific work as they determine the underlying assumptions and methodology (cf. Kuhn, 1996; Törnebohm, 1985). This thesis is anchored in the naturalistic paradigm, which is based on the assumption of human beings’ ability to shape and create their experiences. Thus, the truth is a composite of multiple interpretations of reality. Naturalistic research is directed at understanding human experience as it is lived through the collection of qualitative material of a subjective nature in the real world gained by different methodological procedures (Denzin & Lincoln, 2000; Polit & Beck, 2004). Hence, qualitative research aims at interpreting and understanding the meaning of phenomena through the understanding of the meaning people give to their everyday experiences (Denzin & Lincoln, 2000).

As the aim of this thesis was to deepen the understanding of nursing care for patients on the edge of life, a qualitative, explorative and descriptive design was chosen. Data were inductive and openly collected by means of nurses telling about their experiences of caring for seriously ill patients when questions about withholding or withdrawing treatment were raised. As the researcher is the key instrument in qualitative research (Kvale, 1997; Polit et al., 2001; van Manen, 1997), the researchers involved in this project (RH, BH, EA) continually reflected upon and evaluated their personal pre-understandings, as well as any supposed influence on the participants, data collection and analysis.

In this thesis all studies were conducted with qualitative approaches: phenomenology (I, III, IV) and phenomenography (II). Table 1 gives an overview of the design of this thesis.

Table 1. Overview of study I-IV: design; data collection, participants, settings, and data analysis.

• Same as in study I, ** same as in study II

Study Design Data collection Participants Settings Data analysis

I

Explorative/ descriptive

Group interviews. 2 groups, 4 times each, á 2 hours

14 RNs

ICU Interpretative phenomenology

II

Explorative/ descriptive

Individual interviews x 2 14 RNs

Nursing homes

Phenomenography

III

Explorative/ descriptive

Group interviews. 2 groups, 4 times each, á 2 hours

14 RNs *

ICU Interpretative phenomenology

IV

Explorative/ descriptive

Individual interviews x 2 14 RNs **

Nursing homes

Interpretative pehnomenology

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Phenomenology (I, III, IV)

Phenomenology is anchored in philosophy and is both a philosophical theory and a research method. Phenomenological research is the study of the ‘life-world’. The life-world is understood as pre-given and taken for granted, and is the world in which people are immersed in their everyday life, as all experiences and activities are related to the life world (Bengtsson, 1999; Strandmark & Hedelin, 2002). Phenomenological research seeks to do full justice to phenomena in the life world by ‘going to the things themselves’, not to theoretical abstractions (Polit et al., 2001). The ‘things’ are synonymous with phenomena, and do not exist only in themselves, but also as a consequence of human experience (Dahlberg et al., 2001). The purpose of phenomenological research is to acquire a deeper and richer understanding of people’s everyday experiences, in which inherent meanings often are implicit (Field & Morse, 1996; van Manen, 1997). Hereby it is possible to understand the essence of the phenomenon. Walton and Madjar (1999) claimed that phenomenological studies can give us an understanding of nursing practice which is simple and well known, but which also can highlight unknown and complex sides of practice and give access to the core of nursing.

Three studies (I, III, IV) in this thesis are based on interpretative phenomenology. According to this tradition people are constructed by the world and they are also constructing this world from their own background and experiences since they are indissolubly related in cultural, social and historical contexts (Munhall, 1988). This creates a basis for pre-understanding, which is the meaning that is present before people understand the situations they are facing. In interpretative phenomenology, unlike descriptive phenomenology, it is not possible to step outside of or put pre-understandings aside. Instead, experiences are recognised and affirmed and can be used as a background when the researcher interprets the phenomenon (cf. Benner, 1994). However, the pre-understandings must be identified and set aside as much as possible in order to be able to explore the participants’ experiences as unbiased as possible (Colaizzi, 1978; van Manen, 1997).

The processes of finding the essential meaning of a phenomenon in the descriptions of peoples’ lived experiences are submitted to a process, which might be performed by different steps (Colaizzi, 1978; van Manen, 1997). Departure from the text as a whole, finding emerging themes or categories and searching for their inherent relation constitutes the mode to find the essential meaning or fundamental structure of the phenomenon. Of importance in this process is the researcher’s openness and awareness to the data given, and ability to think intuitively and reflectively (Halldórsdóttir, 2000; Strandmark & Hedelin, 2002).

Phenomenography (II)

In order to discover variations in the nurses’ experiences a phenomenographic approach was chosen in study II (Marton, 1981; Uljens, 1989). Phenomenography is based on the assumption that the meaning of the world is constituted through the person’s conception and is understood and experienced in qualitatively different ways (Barnard et al., 1999; Marton, 1981; Uljens, 1989). The aim of phenomenography is to identify, describe and systematise the different ways people conceptualise, experience or understand significant aspects of the surrounding world (Marton, 1981). The different ways of understanding have both ‘what’ and ‘how’ aspects. ‘What’ informs about what the participants focus on, ‘how’ describes how meaning is created (Uljens, 1989). Phenomenographic research is not concerned about the phenomenon as such, but with descriptions of the different ways the phenomenon under study is understood or conceived to be. This is referred to as the ‘second-order perspective’ and is in contrast with the ‘first order perspective’ where the focus is on what the phenomenon really is (Marton, 1981).

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Thus, in phenomenography, people’s conceptions of phenomena are essential. Conceptions are abstractions from reality and representations of the interrelationship between subject and object (Barnard et al., 1999). Through samples of conceptions, referred to as categories of description, it is possible to characterise and understand the piece of reality under study (cf. Bowden, 1995). Categories of description are mutually exclusive, relational, experiential, content-oriented and descriptive (Barnard et al., 1999; Marton, 1988). The entire result is illustrated in the outcome space, which is a composition of the combined categories (Barnard et al., 1999; Marton & Booth, 1997). The logical relationship between the categories is hierarchical, horizontal or vertical (Uljens, 1989).

The relation between phenomenology and phenomenography

There are similarities but also many differences between phenomenology and phenomenography which have been discussed by many authors (Dahlberg, 1992; Dahlberg et al., 2001; Larsson & Holmström, 2007; Uljens, 1993). Some of these will be briefly presented below.

Both phenomenography and phenomenology are qualitative, descriptive approaches concerned with phenomena and how people experience them in their daily life. However, their aims and consequently their findings are different. Phenomenology searches for depth and richness in meanings of lived experiences and the very nature of a phenomenon by asking what the essence of the phenomenon under study is. In phenomenography variations and the architecture of variations of a phenomenon are searched for by asking what different aspects of experiences can be found. Briefly one can say that phenomenology focus on similarities, in order to find the essence, while phenomenography focus on differences.

Settings

Study I and III were conducted in an adult ICU in a hospital in Norway. There were nine beds in the unit, of which six were intended for ICU patients. Of these six, four beds were intended for patients in respirators. Altogether 37 RNs worked in the unit. The delivery system was patient assignment on a daily basis. Sometimes a nurse could be assigned to a patient over more than one day in order to follow the patient’s condition over time. This nurse was called ‘primary nurse’ even if the original primary nursing system was not established in the unit. Some patients had diaries in which the nurses made notes to inform the patients and their relatives about important things that happened during their ICU stay. The anaesthetists had the overall responsibility for medical treatment in the ICU in cooperation with the patient’s physician from the ordinary unit, such as surgeons or internists or consultant specialists. This meant that the ICU nurses co-operated closely with a number of physicians.

Study II and IV were carried out in two nursing homes in Norway, one (A) in a small town and the other (B) in the countryside. The total number of beds in nursing home A was 60 divided into two units with 30 beds in each. Nursing home B had 99 beds in all, divided into four units with 22-29 beds in each. The units were not specialised, except one short-time unit, which acted as an intermediate and rehabilitation unit, and another unit, which had two beds for palliative care. Both institutions had some beds for patients with dementia and for temporary accommodation and care. The total number of RNs was 20 (16,9 positions) in A and 39 (24,3 positions) in B, and the number of enrolled nurses and nurses’ aides were 58 persons (27,9 positions) in A, and 111 persons (54,2 positions) in B. The RN - patient ratio on each shift was about one RN per unit during daytime. For evenings, nights and weekends it varied from about one RN per unit to one per nursing home. There were also about 6-9 enrolled nurses and assistants per unit during

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daytime, and 3-6 enrolled nurses and assistants per unit during the other shifts. The units were run by means of team nursing. The scheduled time for attendant physicians was regularly seven hours once a week and included rounds and administrative work. At other times, the patient’s general practitioner was contacted during daytime. Physicians at the emergency department were called during evenings, nights, weekends and holidays, which meant that nursing home nurses during these shifts often co-operated with physicians who did not know the patients.

Participants

The participants were purposefully included (cf. Polit & Beck, 2004) according to the following criteria: RNs, differences in sex, shifts, overall experience as nurses and in ICUs/nursing homes and in specialist education. It was also requested that the participants had experiences of the phenomenon under study, were willing to articulate their experiences, and had time-schedules, which allowed them to take part.

In the ICU 19 nurses expressed their interest in participating, and 14 female nurses, who met the inclusion criteria, were chosen by the author of this thesis (RH) and the head nurse, taking into account the nurses’ time schedule. In the nursing homes 14 nurses reported their interest in participating. All were included in the study as they met the criteria of selection. This gave six nurses from nursing home A, and eight from B. One man was included as he was the only male nurse who reported an interest in participating.

The nurses in the ICU were all female RNs and specialists in intensive nursing care and had in average more than ten years (2-25) of experiences in ICUs after specialisation. In the nursing homes six participants were RNs, and eight were RNs specialised in different areas of nursing care. Two of the nurses had more than one specialisation. The median years of work as RNs were 14 (1-33), and the median years of work in nursing homes were nine (1-25) (table 2).

Table 2. Overview of the participants

ICU Nursing home A Nursing home B Participants 14 6 8 Special education Intensive nursing care (14)

Clinical supervision (1) Management (1) Anatomy, physiology (1)

Geriatric nursing (1) Cancer nursing (1) ICU (I) Psychiatric nursing (1)

Geriatric nursing (1) Palliative care (1) ICU (1) Rehabilitation (1) Management (1) Clinical supervision (1)Documentation (1)

Years of work as registered nurses (md)

22,9 18,2 11,8

Years of work as a nurse in ICU/nursing home (md)

14,5 (n= 12) 9,1 10,6

Years of experiences after specialisation (md)

10, 5 Not asked Not asked

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Data collection

Data was collected by focused, non-structured group interviews inspired by Benner (1984; 1994) and focus-group methodology (Morgan, 1993) (I, III) in 2002- 2003, and individual interviews (II, IV) in 2005.

The nurses were invited to the interviews to relate cases when questions of withholding or withdrawing curative treatment were raised, and the decisions according to them turned out the way they desired for the patients, or, when decisions did not, how they then had wanted them to be. They were free to tell as many cases as they wished. To attain as realistic descriptions as possible it was emphasised that no experiences were right or wrong.

The nurses were asked to describe and reflect openly upon

- how they experienced the patients’ situations (I) or needs (II) - how they experienced being the patient’s nurse (III, IV) - the nursing care they performed (I, II) and how they had wanted it to be if they thought

the nursing care was inadequately performed (I, II) - opportunities and hindrances to giving good nursing care (I – IV)

All interviews were carried out by RH and took place at the hospital (I, III) and the nursing homes (II, IV) during the participants’ working hours. All interviews were tape-recorded and transcribed by RH.

Group interviews (I and III)

The 14 participants from ICU were divided into two groups, seven in each group. Each group met four times for about two hours each time, two to three weeks between each interview, during the course of 11 weeks. One observer, from outside the research-group, was responsible for tape-recording and checking that the interviewer worked in accordance with the aims of the studies. Both the interviewer and the observer had worked as clinical supervisors in nursing and were familiar with group processes. Firstly, each participant in the group described a case according to the invitation to the interviews. After the case descriptions, the participants chose one case for further reflections. This put one participant in focus who was free to choose which aspects she wished to deepen. She was continually encouraged to deepen her descriptions as far as possible, further clarify her experiences of being a nurse to the patient, and to try to ‘step into the patient’s shoes’ and describe her understanding of the situation and the nursing care. At the end of each group interview the interviewer and the participants together summarised the content of the interview and agreed upon some subjects, which the participants should reflect upon until the next interview. Each interview was transcribed afterwards and scrutinised with the aim of the study in mind to find out if any issue should be deepened and clarified in the next interview.

Individual interviews (II and IV)

The individual interviews (II, IV) were conducted in a similar way to the group interviews. After describing a case, each participant was given the opportunity to choose which aspects should be further reflected upon. The first interviews were transcribed immediately afterwards, and read by RH with the question of research in mind to find out if anything should be further deepened and what more should be focused on in the second interviews. The participants were free to reflect

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upon whatever had come into their minds related to the previous interview with regards to the research questions.

Data analysis

The phenomenological analysis

The analysis of data in study I and III was inspired by Colaizzi’s (1978) seven steps of phenomenological analysis which he has proposed as follows:

• Read each verbatim transcript several times to acquire a sense of the whole. • Extract significant statements and phrases pertinent to the investigated phenomenon from

each transcript, contrast and compare them in order to find similarities and differences. • Spell out meanings as ‘formulated meanings’ of the significant statements, and formulate

phrases and preliminary themes. At this point the researcher’s creativity is challenged as he/she must go beyond what was given in the original data to discover hidden meanings, at the same time as he/she must make strong efforts to stay with the data.

• Formulate preliminary themes into themes and clusters of themes and validate the clusters of themes by comparing them with the transcripts.

• Integrate the findings into an exhaustive description of the phenomenon. • Formulate a statement of the fundamental structure of the exhaustive description of the

phenomenon. • Validate the findings by returning them to the participants.

All steps were followed in study I and III. The validation of the findings is proposed as a final step by Colaizzi (1978), but he has also pointed out that a validation can be achieved in a single interview. Each interview transcript was analysed in accordance with the first three steps between each interview, and preliminary themes were brought back to the participants to be confirmed, adjusted or eliminated in line with their comments. The findings of study III were returned back to the ICU nurses in a staff meeting for validation.

The analysis of the data in study IV was inspired by van Manen’s (1997) phenomenological method, which he has proposed as follows:

• In the wholistic approach the text is understood as a whole and the question is asked: ‘What sententious phrase may capture the fundamental meaning or main significance of the text as a whole?’

• In the selective approach the following question is asked: ‘What statement(s) or phrase(s) seem particularly essential or revealing about the phenomenon or experience being described?’

• In the detailed approach every single sentence or sentence cluster is scrutinised while asking: ‘What does this sentence or sentence cluster reveal about the phenomenon or experience being described?’ (p. 93).

The phases as proposed by van Manen (1997) were followed to some extent. A wholistic approach was used for all transcripts to find an overall and fundamental meaning of the phenomenon. Furthermore, each interview was read in its entirety to obtain an understanding of what the text conveyed. Then phrases and sentence clusters that seemed to be thematic for each interview were marked as meaning units. In the selective approach the following question was asked: ‘What does this meaning unit reveal (thematically) about the phenomenon?’ Concerning

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the detailed approach the analysis departed from van Manen’s (1997) proposals in that preliminary themes constructed in the selected approach were controlled, nuanced and deepened by asking: ‘What does this really reveal about the nature of the phenomenon?’ Meaning units and preliminary themes were read and re-read, combined and reduced, written and re-written, until a basic structure was found. This basic structure was grouped into main themes and themes. After the processes of intuitive and reflective writing the essential theme emerged (cf. Hall, 2004).

The phenomenographic analysis

The data in study II was analysed by a phenomenographic method, using the steps which Hyrkäs et al. (2003) has described as follows:

• Read the entire material in order to acquire an overall picture. • Select comments of interest for research tasks. • Compare the comments with the content of the interviews. • Group the comments of the previous stage into pools of meanings. • Compare similarities and differences in the pools of meanings and test emerging categories

through comparing them with the interviews. • Generate categories of descriptions and their interrelationships, which are meaningful,

comprehensible and as accurate as possible with the original material and describe them in terms of vertical, hierarchical and/or horizontal interrelationships.

• Name the categories by using depicting concepts that illustrate the material as well as possible.

The process of analysis moved back and forth between the entire interview text and its parts, and between the different steps of analysis.

Trustworthiness

In qualitative studies the use of criteria such as reliability, validity and generalisability are discussed and questioned (de Witt & Ploeg, 2006; Krefting, 1991; Sandelowski, 1986). However, it is important to have data that reflect the true state of human experience (Polit & Beck, 2004). Rather than taking the terms from the quantitative paradigm, scientists within qualitative research have proposed alternative ways to think about rigour of the research (Guba & Lincoln, 1981). Even if there are controversies about what criteria are appropriate for assessing the ‘truth’ of research, the trustworthiness of the studies in this thesis is related to those described by Sandelowski (1986): credibility, fittingness and auditability.

Credibility is a criterion for assessing the ‘truth’. A qualitative study is credible when the findings are immediately recognised by others as their own experience, or others are able to recognise the experience after having heard or read about it in a certain study (Sandelowski, 1986). In study I - IV credibility was enhanced by several strategies. In order to keep close to the data, RH conducted and transcribed all interviews and listened to the tapes several times during the process of data analysis. To enhance researcher credibility and to avoid ‘going native’ (Sandelowski, 1986) the research process was reviewed by ongoing discussion among the researchers (I - IV), obtaining feedback on the conduct of each interview from the observer (I, III), and keeping logs during the research process (I - IV). Credibility was also enhanced by supporting findings with quotations from the interviews and by member-checking on preliminary findings from the previous interview before starting the next interview (I, III). The participants’

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responses were taken into consideration in the further analysis. As recommended by Colaizzi (1978), the ICU nurses were asked to respond to how final findings corresponded to or differed from their experiences (III). The nurses confirmed all the themes and helped to further clarify one theme concerning the use of precise words to ensure correct understanding.

In relation to the individual interviews RH wrote her experiences and reflections on the content and conduction of the interview. To verify and clarify what the interview was about, the interviewer or the participant made summaries throughout and at the end of each interview as well as at the beginning of the second interview (II, IV) (cf. Polit & Beck, 2004).

Sandelowski (1986) argues that the criterion of fittingness is met when the findings of a study are viewed as meaningful and applicable in contexts outside the study situation. Fittingness in this study was confirmed since the findings were recognised and welcomed by other nurses when presented verbally to them; for instance nurses in other ICUs, in home care, in palliative care and in other nursing homes (I - IV) (cf. Polit & Beck, 2004). Furthermore, fittingness is about the correspondence between findings and data (Sandelowski, 1986). Therefore the researchers co-operated throughout the process of analysis by analysing transcripts separately and by disusing preliminary findings during different steps of analysis.

According to Sandelowski (1986) auditability relates to the consistency of the findings and is visible when another researcher can conduct a similar study by following the tracks from the decisions made in the study. Auditability is also apparent when another researcher can make comparable conclusions (Sandelowski, 1986). In the studies (I - IV) auditability was enhanced when Colaizzi’s (1978), van Manen’s (1997) and Hyrkäs’ (2003) steps of analysis were followed as precisely as possible or were explained and exemplified if they were departed from. Furthermore, auditability was improved as all transcripts with numbered statements and preliminary and final findings were scrutinised by two or all the three researchers.

Ethical considerations

The studies were carried out according to ethical principles and guidelines as outlined in the International Council of Nurses’ Codex (2001) and Ethical Guidelines for Nursing Research in the Nordic Countries (Northern Nurses’ Federation, 2003). Ethical principles regarding voluntariness, confidentiality and integrity were applied.

Approval to conduct the studies in the hospital and nursing homes was obtained respectively from the hospital director, the chief administrative officer in the municipalities and the nursing services at the institutions. RH informed about the study at a staff meeting in ICU. The head nurse then distributed written information about the study with an invitation to all nurses in the unit to participate in group interviews. In the nursing homes the head nurses or RH informed the nurses verbally about the study, and the head nurse distributed written information about the study to all nurses. Written consent was obtained from each participant before the first interview, in which his/her right to refrain from participation at any time and his/her vow of secrecy was stated. A contract was established with the head nurse to support the nurses if necessary after each interview.

Numbers instead of names of the participants were used in the group interviews, and in the individual interviews the use of the participant’s name was avoided. Numbers was also used in the transcripts of interviews. The participants were encouraged not to tell the names of patients and relatives and to describe them as anonymously as possible. The taped and written material was kept locked in accordance with regulations (NSD, 2007). The project was reported to the Norwegian Social Science Data Services.

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Main findings

The findings will be presented in accordance with the specific aims in this thesis, which all took their point of departure in nursing care when questions were raised about withholding or withdrawing curative treatment for severely ill patients in ICU and nursing homes. This point was also labelled as ‘being on the edge of life.’

The findings will firstly illuminate the patients´ situations and needs as described by the nurses, followed by the nurses´ experiences of what good nursing means to the patients and the meaning of being a nurse in this situation. Finally, the nurses´ experiences of opportunities and hindrances to carry out good nursing care will be presented.

Patients on the edge of life in ICU (I) and nursing home (II) – their situation and needs

According to the ICU nurses (I) the patients’ situation were hard and burdensome when questions were raised whether to withhold or withdraw curative treatment. Four themes were found. ‘Waiting in confusion’ meant that the patients were exposed to waiting for clarification of goals about their treatment, for a turning point related to living or dying, and for contact with relatives and physicians. For many patients this waiting was interpreted as being monotonous and confusing, as it could be difficult for them to distinguish days from nights, realities from fantasies, and their bodily limits from machines. ‘Loneliness’ meant that even though the patients were surrounded by many people, loneliness accompanied their severe illness, and caregivers seldom talked to them about their situation and sometimes also withdrew. ‘Exhausted in suffering’ meant that the patients were often troubled by problems with breathing, vomiting and pains. The patients’ suffering was exacerbated by invasive treatment, a noisy environment and frequent changes of treatments. The participants told about patients who were extremely afflicted and exhausted, and some of them even asked for being released from treatment. At the end of life they seemed to have no energy left. ‘Loss of control and dignity’ meant that the patients were totally surrendered to other people and were seldom able to ask for or refuse help. The patients also were described as losing their dignity, when they were treated for the sake of others, when their appearance changed because of the illness and treatment, or when they lost control over their bodily functions and privacy.

In nursing homes (II), ‘the patient’s need for dignity’ was found to be the overall need. This captured ‘the need of preparedness’ which was described as being prepared for what was to come, being free from anguishes and managing to keep their hope up. The patients’ level of preparedness depended on their ability to understand what the situation really meant. A few patients could indicate that they were conscious but most often they were unable to express themselves clearly and some were described as totally unreachable. Some patients seemed to struggle hard, but it was difficult to know for what, and their expressions were interpreted by the participants as showing anxiety, despair, or denial. Several patients appeared exhausted and withdrew, whereas others looked peaceful and prepared when death occurred. ‘The need for human relationship’ described the patients’ needs for meaningful relations to other people and not being abandoned. Only a few patients were considered to have a need for solitude. As the patients’ condition decreased, their social contact with friends and relatives often faded away. ‘The need for comfort and safety’ described the patients’ incapability to manage these needs themselves. The nurses described the patients as exposed and their bodies as fragile. Few patients were described as being comfortable and free from pain.

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Good nursing care for patients on the edge of life in ICU (I) and nursing home (II)

The findings showed that the nurses mostly thought that they knew what good nursing care should be for patients on the edge of life, but also that they could not always achieve this professional level (I, II). This meant that the patients’ situation and needs could be satisfied or be unsatisfied. Good nursing care for ICU patients on the edge of life (I) was captured as ‘being met openly and nursed by safe and caring hands in a collaborative environment’, which highlighted communication, collaboration and competence as cornerstones in ICU nursing care. This focused attention on the nurses’ knowledge, experience, proficiency, commitment and thoughtfulness when assessing patients’ conditions and carrying out treatment and nursing actions. It also highlighted the significance of the nurses’ hands, when caring for these patients. The nurses tried to take their point of departure from the patient’s situation in their daily care, but it was experienced as difficult to know what the patient’s wishes and situation really were. Collaboration in the team based on clear goals was therefore stressed as necessary in order to avoid contradictory treatment and nursing care. Good nursing care related to the patient’s ‘waiting in confusion’ aimed at protecting patients against distressing impulses and sensory imbalance. The nurses also described that they tried to enhance peace and quiet for each patient by coordinating and sometimes eliminating activities, reducing noises and enhancing normal diurnal rhythm as far as possible, using hand-touch to confirm the limits of the patient’s body and his/her sense of being alive. Good nursing care related to patient’s ‘exhaustion in suffering’ aimed at reducing the patient’s afflictions and pains and enhancing his/her comfort. The focus was on sufficient pain-relieving medication and care for the patient’s fundamental needs. By a skilful performance of adequate nursing actions, with adjustment of tempo to the patient’s rhythm, and cautious and tender use of the nurses’ hands, the patient’s suffering could be alleviated. Preserving the patient’s hope and giving the situation meaning was also emphasised in order to lessen the patient’s suffering. By bodily care and touch combined with words, the nurses tried to draw the patient’s attention to his/her future. Humour was sometimes used to encourage a patient. Relatives’ role was also described as important in this situation. Good nursing care related to the patient’s ‘loneliness’ aimed at maintaining patient’s meaningful relations and not being abandoned. This could be done by supporting relatives and urging physicians to visit the patient, and by assurances that the nurse would not leave him/her. The patient’s right to get to know about his/her situation was highlighted as a mean to limit the patient’s loneliness. At the same time the nurses underlined that the patient would not be forced to talk about his/her situation. The patient’s awaking state could be used to clarify his/her desires. Even if a patient’s withdrawal was considered as natural responses to the situation, the nurses sometimes could try to bring him/her back by talking about things that were believed to interest him/her. Good nursing care related to the patient’s ‘loss of control and dignity’ was described as showing him/her respect, enhancing his/her personality in the daily care, keeping him/her clean and fresh, preserving his/her appearance, and protecting him/her against being unnecessarily exposed. It was also stressed that the patient’s environment could affect his/her dignity. Therefore this had to be kept clean, well-ventilated and orderly.

Good nursing care for these patients in nursing homes (II) was captured as ‘meeting the patient’s need for dignity’, illuminating what good nursing care could attain, and what could happen when nursing care was inadequate. This was understood as a continuum between different extremes – a positive and a negative pole. Nursing care was conceived to contribute to ‘reconciliation or hopelessness’ for the patient, depending on variations in the care in relation to how well the patient’s wishes and needs were expressed, interpreted and followed. It was also related to the staff’s communication with the patient about his/her situation and existential questions. When

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the care took as its starting point the patient’s wishes this could help the patient to get hold of reality and talk about meaning, hope and religious needs. However, only a few nurses mentioned that this was carried out in the daily care. ‘Togetherness or abandonment’ could be the consequences of nursing care depending on variations in the care related to the presence of and the way the staff, physicians and relatives encountered the patient. The nurses stressed the significance of talking even to patients who were unconscious and cognitively impaired, and to show their presence by touching and holding the patient’s hand. Tuning in their voices and sometimes being present in silence were given as examples of good care. The participants stressed the importance of not leaving a patient alone when he/she hovered between life and death. Yet, this could happen, for example when the patient was sent to the hospital in the terminal phase or died alone. The importance of cooperation in the team was stressed as a means to reach good nursing care. Also cooperation with relatives and supporting them when the patient’s condition deteriorated was highlighted. In cases of absent relatives the nurses could take the role of the patient’s family or establish a system of primary contacts in order to support the patient. In spite of all nurses’ efforts, many patients were experienced as being lonely and abandoned. Nursing care could also lead to ‘relief or affliction’ as there were variations in protecting and comforting the patient through basic nursing care, pain-reliving medications, and in maintaining appropriate treatment related to the patient’s (supposed) desires. Sometimes the patient’s needs for relief were unmet, for example when treatment was inadequate or was continued against the patient’s (supposed) desires. The nurses emphasised the necessity to discover patient’s desires, capabilities and needs, and to work out an appropriate care plan based on these. The patient’s ‘comfort and safety’ were to a great extent conceived as depending on the individual nurse’s interventions based on her observations, assessments, judgments and compassionate care. Most often the participants thought that they could meet the patient’s need for basic nursing care. The nurses also tried to enhance the patient’s autonomy and individuality by encouraging him/her to express his/her desires about daily care, and by caring for his/her appearance. Fostering quiet and a good atmosphere in the patient’s room was emphasised.

Being a nurse in ICU (III) and nursing home (IV) when questions are raised whether to withhold or withdraw curative treatment

Being an ICU nurse for patients when questions whether to withhold or withdraw curative treatment were raised (III) was captured as ‘being a critical interpreter and a dedicated helper.’ This meant that the nurses’ observations, interpretations, holistic knowledge and commitment could be experienced as decisive for whether a patient would survive or die, but also for the way he/she survived or died. Nurses’ contributions were considered to be imperative in this situation, as they thought they could give valid interpretations of the patients’ conditions to the physician. ‘Loneliness in responsibility’ meant that nurses’ care of patients on the edge of life was based on an extended responsibility which included judgements related to changes in patients’ conditions. This was experienced as burdensome when it occurred with loneliness. Sometimes the nurses felt forced to go beyond their professional limits when physicians were absent, and at times they could behave assertively towards physicians if they thought that they did not take their responsibility. ‘Alternation between optimism and pessimism’ meant that nurses’ state of mind changed in accordance with the patients’ varying conditions. They felt hopeful when the patients showed signs of recovery or when suffering was relieved, but sad when the opposite occurred. When the nurses had to administer treatment that they feared could violate the patients’ dignity or increase their suffering, they themselves suffered. This could sometimes lead to exhaustion or blocking out the nurses’ feelings. Both pessimism and optimism spread easily to other nurses. ‘Uncertainty – a constant shadow’ meant that even if the nurses thought they knew what was

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‘right’ in the care and the treatment of the patients, they at the same time could feel uncertain, as the patients’ desires were mainly unknown. The nurses also felt uncertain when goals for the patients’ treatment were unknown, vague or lacking. Clear goals were stressed as important since they could give the nurses a sense of meaning, save their energy and facilitate their acceptance of decisions. ‘Professional pride despite little formal influence’ meant that the nurses were proud of possessing significant knowledge and competency, based on their opportunity to catch and interpret important signs from patients. When their knowledge about the patient’s situation was not approved, they could feel hurt, but they were proud of their efforts to fight for what they viewed as the patient’s best.

Being a nurse for patients in nursing homes when questions about curative treatment or not were raised (IV) was captured as ‘being a lonely and enduring struggler between opposite poles’. This meant that the nurses’ commitment to the patients was strong and that they struggled to act in accordance with what they considered to be the patient’s best. However, their loyalties were divided and they felt pulled between providing good and insufficient nursing care as there were many conflicts of interests. ‘Striving to do right and good’ illuminated that someone often was let down - whether it was the patient, the nurse herself, relatives, physician or colleagues. ‘Feeling certain, but accompanied by uncertainty’ meant that the nurses thought that they often knew the patient’s situation best, and understood the patient’s wishes. This certainty was enhanced when their opinion about a patient was supported by colleagues or when they agreed on a decision about treatment. As the opinions in the team could vary, certainty was often accompanied by uncertainty. Uncertainty was experienced as great emotional strain and drained the nurses’ energy. ‘Being caught between too much responsibility and too little formal power’ meant that the nurse often was the only RN on the ward, and the physician was seldom available. This situation put a heavy responsibility on the nurses. They often felt obliged to exceed their professional bonds for the patients’ best, and sometimes they could feel forced to justify and stand up for decisions they disagreed with. When they were unable to give adequate nursing care to a patient they often felt powerless. ‘Being a vulnerable helper – the prize and the price’ described the nurses’ challenges both as professionals and persons. Their commitment to the patients was strong and caring for them was experienced as professionally and personally developing. They felt professional and successful when their care corresponded with the patient’s (supposed) wishes. Their commitment to the patients often made them expose themselves to distressing tasks, and they often strove to find an appropriate balance between nearness and distance. Experiences of grief could arise when a patient died, and feelings of shortcomings, guilt, and bodily afflictions could occur, and some of the nurses even contemplated changing jobs. This occurred especially when they had to carry out treatment and care which conflicted with their views of the patient’s best. Their need for relief in the sometimes very demanding situation was described as ‘emotional protection in professional commitment’. This could be done in various ways, for instance by withdrawing from patients, rationalisation and focusing on the reputation of the institution and risk of reprisals. Being ‘undervalued in spite of professional pride’ meant that the nurses were proud of their official mandate and opportunities to help a suffering and/or dying patient, but they also expressed that they often were regarded as second-rated especially compared to nurses in hospital. A hierarchy between physicians and nurses and among the nurses in the nursing homes could also fuel their experiences of low esteem.

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Opportunities and hindrances to achieve good nursing care in ICU (I, III) and nursing home (II, IV)

The research questions about opportunities and hindrances to achieving good nursing care were answered in the ICU studies by describing ‘general conditions’ for good nursing care (I). They were also illuminated in study III, when the nurses described their lived experiences of being a nurse in ICU. In the nursing home studies the opportunities and hindrances, were focused upon in study II, and they were also described in study IV.

In the ICU, nurses’ comprehensive knowledge, competence and commitment were described as a precondition for good nursing care. Continuity was stressed as a ‘general condition’ for making adequate judgements possible and reducing stress for the patient. This could be enhanced by appropriate staffing, rooms and organisation of nursing care. Caring for the same patient over time, as well as accurate documentation, was underlined as significant to enhance continuity (I). Physicians’ unavailability when being on call and shared responsibility among physicians for a patient also was experienced to cause discontinuity in the care (III). The nurses’ sympathy with physicians’ arduous working situation made the nurses reluctant to call for them, which was experienced as putting the patients at risk of being harmed and adding extra pressure on the nurses (III). Nurses’ participation in the decision-making process on a formal basis, routines to clarify patients’ desires when they were woken and cooperation with relatives, nurse colleagues and physicians was seen as essential in order to clarify goals to ensure the best treatment and care (I, III). Often there were unclear goals, which made the physicians give conflicting messages and the nurses carried out diverging treatment and care (III). The cooperation to clarify goals and plans often failed through the lack of regular discussions between nurses, physicians and relatives (III). The nurses had also difficulties in imparting their knowledge about the patients to the physicians (III). Supporting the relatives’ was seen as important both for the patients´ and for their own sake (I). The nurses often experienced that their concerns about the patients differed from the physicians’ concerns (III). Sometimes, their involvement in the patients could be so intense that they had to protect themselves by blocking out their feelings (III). This in turn pointed at nurses´ need for support to cope with their feelings of distress and to manage good quality care (I).

In nursing homes (II, IV) nurses’ opportunities to give good nursing care could be obstructed in several ways. The hindrances were related to organisational, relational and personal factors.

‘Organisational factors’ described how staffing, routines and practical issues could impact on the nursing care for the patient on the edge of life. The findings illuminated how low flexibility in the healthcare system, financial cut-backs, shortage of competent personnel and lack of time could be reasons for why patients were sometimes inappropriately treated or died alone. Outstanding obstacles were related to deficiencies in the number of competent and concerned personnel. The physicians’ unavailability due to their limited time scheduled for the nursing home was stressed as a major problem. This led to insufficient and sometimes inadequate knowledge of the patients (IV). A lack of knowledge and competency among the nursing personnel, as well as a low rate of registered nurses, were also reasons for inappropriate care (II, IV). Lack of continuity due to frequent changes of attendant physicians was highlighted as a hindrance, which could lead to misinterpretations and misunderstandings (II, IV). Inappropriate routines for patients’ end-of-life care were conceived to often result in vague goals, followed by conflicting treatment and care (II, IV). The need for routines was underlined with regards to the clarification and documentation of patients’ preferences for life-sustaining treatment (II, IV). A lack of regular team-meetings and rooms for confidential discussions was also seen as an obstacle to good nursing care (IV).

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‘Relational factors’ concerned cooperation and communication with patient, relatives and health-care personnel. The nurses considered that decisions about treatment and care should be made through teamwork, but often they were not included in decisions about the end-of-life care. They thought that their opinions concerning questions about withholding or withdrawing treatment for a patient and about how to care for these patients most often were in accordance with the patients’ (II, IV). However, there were sometimes conflicting opinions concerning these questions. Divergent opinions might occur between nurses and physicians, between nurses, or between personnel and relatives (IV) and made the nurses sometimes withdraw from the ward fellowship. Lack of cooperation with home nurses, general practitioners and hospitals could also create problems in planning and performing nursing care. According to the participants insufficient cooperation often led to delayed or ‘wrong’ decisions. Whether communication about death and dying was conceived as a natural part of the working culture varied, but was often avoided when there were conflicts in the staff about the appropriateness of treatment (IV). The nurses found it extremely difficult to be honest and open in the communication with the patients, especially when the patients’ wishes concerning life-sustaining treatment or not were unclear. As the physicians were infrequently present at the nursing homes, the nurses often had to address the relatives’ questions about the patients’ treatment and care, even if they were themselves unsure about the answers (II, IV).

‘Personal factors’ were related to the individual nurse - her inner strength and loyalties. The nurses’ commitment and compassion for the patients was found to be an important precondition for good nursing care. However, taking care of these patients also put heavy demands on the nurses, since the patients’ well-being and safety were experienced as being dependent on the nurses’ presence (II, IV), and they expressed that they often missed professional support. Sometimes this demand could be too hard to bear, and to protect themselves they could for instance withdraw from or avoid the patient, or they considered the treatment to be only a practical issue (IV). To stand up for the patient’s best in every conceivable situation was experienced as trying, and sometimes a nurse could let the matter rest, instead of fighting for it (II, IV). This demanding situation could also lead to nurses’ silence when insufficient systems and working conditions could threaten patients’ well-being and safety. Nurses’ loyalties were often pulled between patients, physicians, organisations and their own values. Their obligations to the law required their obedience to physicians’ prescriptions, even if this conflicted with their own convictions about a patient’s best. This could lead to increased suffering for the patient. The nurses mostly executed the ordered treatment, but sometimes they made decisions about medical treatment on their own without consulting a physician. It could also happen that they executed treatment, which differed from the physician’s order, due to their conviction about what was best for the patient (II, IV).

In spite of the differences in the care contexts many similarities were found concerning opportunities and hindrances to achieve good nursing care in ICU and nursing homes (table 3).

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Table 3. The nurses’ experiences of opportunities and hindrances for good nursing care for patients on the edge of life in ICU and nursing home ICU (I, III )

General conditions (available or not)

Nursing home (II, IV) Hindrances (deficiences/lack of…)

Staffing X X Physicians X X Knowledge and competency X X Continuity X X Cooperation and communication, including systematic discussions

X X

Nurses’ participation in treatment - decision making

X X

Support to nurses X X Nurses’ strengths and loyalties X X

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Comprehensive understanding of the findings (fig I)

All studies (I-IV) in this thesis were interpreted as a whole. The findings were compared and discussed and are presented as the comprehensive understandings.

The nurses’ descriptions of the patients on the edge of life were interpreted as ‘being in a twilight zone’, a state between living and dying. The patients’ situation were understood to be very burdensome as they were mostly ‘voiceless’ and unable to call for, or refuse help and totally surrendered to other people’s devices. Their state was strained by extensive suffering; pains and bodily afflictions, loneliness, confusion and without control and dignity (I). Their need for nursing care was comprehensive (I, II) with an overall need for dignity (II), which included having the needs for preparedness, human relationship, comfort and safety met (II). The patients’ inabilities to express themselves clearly involved major challenges for nursing care (I - IV). Good nursing care was described as caring for the individual patient based on his/her situation and needs. The nurses experienced themselves to be of imperative importance for the patient’s living or dying (III, IV) and their interpretation of the patient’s condition was crucial (III). Their commitment and drive to help was high, they knew what good nursing care was for the patients (I - IV), and they were proud when they succeeded in their care (III, IV). An outstanding finding was the nurses’ experiences of ambiguity of both certainty and uncertainty. Being certain mostly seemed to concern nursing care related to the patient’s needs and situation (I, II), and uncertainty to what was ‘right’ to do with regards to withholding or withdrawing treatment (III, IV). They often experienced loneliness, too much responsibility, a vulnerable professional pride, and being pulled between opposite poles when they struggled to give good nursing care (I - IV), but too often they failed (II, IV). This demanding situation sometimes led to the nurses’ use of several self-protecting strategies. Whether the patients could receive good nursing care or not did not only depend on the single nurse, but was also anchored in opportunities and hindrances on a relational and an organisational level (I - IV). There were many congruities in patterns in the experiences of ICU - and nursing - home - nurses with regards to the situation and needs of patients on the edge of life, and good nursing care. Congruities were also found regarding being a nurse when caring for these patients, and nurses’ opportunities and hindrances for carrying out good nursing care.

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Figure 1. Comprehensive understanding of the findings (study I-IV)

Insufficient nursing care Remaining in the troublesome situation without having the needs met (I, II)

Being a nurse (III, IV) A committed and critical helper accompanied by ambiguity between certainty and uncertainty (III, IV) * Crucial interpreter (III) * Lonely in too much responsibility (III, IV) * Professional pride and little formal power (III, IV)

Opportunities and hindrances for good nursing care (I - IV) Organisational – staffing, continuity, competencies, planning Relational – cooperation and communication Individual – nurses’ inner strengths

The patient on the edge of life To be in a twilight zone between living and dying; voiceless, helpless and surrendered to other’s devices (I, II) with an overall need for dignity (II) * Lost control and dignity (I) * Needs for preparedness (II) * Loneliness (I) and needs for human relationship (II) * Exhausted in suffering (I) and needs for comfort and safety (II)

Good nursing care (I, II) To be cared for based on nurses’ comprehensive understanding of the patient’s situation (I) and needs (II).

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Discussion

The main purpose of this thesis was to deepen the understanding of nursing care for seriously ill patients on the edge of life in ICU and nursing homes, when questions were raised whether to withhold or withdraw curative treatment. This specific situation, to be on the edge of life, could be compared with a twilight-zone, or being in limbo. Limbo refers to a state of nothingness which means an intermediate or midway state or being in transition. It is any status where a person is held up, and nothing can be done until another action happens (Wilkipedia, 2006). The origin of the term is theological, used about a place where souls remain on the border between heaven and hell (WordNet, 2003). However, the point of emphasising the twilight-zone and limbo in this thesis is neither to illuminate religious, nor philosophical aspects, but to underline the situation of the patients as being in a nameless situation between two different stages of life - seriously ill and dying, a state where the patients were heavily afflicted and burdened.

The findings in this thesis showed many similarities with research on end-of-life care, but they also differed. An interesting finding was the pattern of congruity in the two contexts studied - ICU and nursing homes. However, this congruity will only be slightly touched upon in this discussion, as the aim of this thesis was not to make a comparison between the contexts, but to study nurses’ experiences in different settings in order to get a deep understanding of the phenomena under study.

Good nursing care for the individual patient on the edge of life

The findings in this thesis clearly showed that good nursing care meant taking the point of departure in the unique patient’s situation and needs for care. Based on the nurses’ experiences, the patients on the edge of life were profoundly suffering and in great need of nursing care. The patients’ bodily afflictions could be so burdensome that they became exhausted, and sometimes even expressed a wish to be freed from the treatment (I). Suffering has been described as a state of severe distress which threatens the intactness of a person and might result in the loss of meaning in life (Fritz-Millard, 2004). Byock (1997) has stated that the worst kind of suffering is meaningless suffering that lacks direction or end-points. This could be comparable with the situation for many of the patients focused upon in this thesis.

The reasons for the patients’ suffering on the edge of life in this thesis were well in agreement with what other studies about end-of-life care has shown. Pain was a common and complex problem, which has been reported as the heaviest stressor related to treatment among ICU patients (Margarey & McCutcheon, 2005; Richman, 2000; Todres et al., 2000; Turner et al., 1990; Vohra et al., 2006), and a frequent problem in ICU care (Puntillo et al., 2001). In the nursing homes pain relief was seen as a major problem, which also is in line with other studies (Forbes, 2001; Kayser-Jones, 2002). Pain relief was emphasised as an important part of good nursing care (I, II) (cf. Aspinal et al., 2005; Kirchhoff et al., 2000).

Loneliness was described as a companion to most patients (I, II). According to Yalom (1998) a critical condition and being separated from families, homes and the material world might cause an interpersonal loneliness, but also an existential loneliness. He claimed that the meaning of life and death has an individual and unique significance that must be faced alone. Studies have shown that patients at the end-of-life may need time for themselves to think trough their situation and values (Hermann, 2007; Murray et al., 2004; Nilsson et al., 2006). This illuminates a need for solitude, which means being alone without being lonely (Nilsson et al., 2006). Such a time is often not available for the ICU patients, as their need for intensive care often occurs

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unexpectedly, and they mostly have a nurse bedside. Some patients in the nursing homes were described as having a need for solitude, and respecting this need was seen as good nursing care (II). The nurses also tried to help patients who withdrew from human relations by different means: confirming their presence verbally (I, II), using hand touch (I, II), enhancing continuity of care (II), and encouraging the relatives to stay by the patients’ side (I, II). Such interventions are well known as good quality care for dying patients (Kuhl, 2002). In cases where the patient had no close or caring family at hand, the nurses sometimes took the role of the patient’s family (II). In spite of this, it could happen that patients in nursing homes were alone around the time of death, which also has been found by Forbes (2001). Dying alone may be a sign of insufficient care which must be avoided in any care context. When it occurs, this should be a starting point for scrutiny and improvement.

Patients in their last months of life have identified spirituality or religiousness as a significant dimension of care (Emanuel et al., 2000; Murray et al., 2004). Research has shown that spiritual well-being is of great importance to patients at the end of life with regards to maintaining hope, giving power to deal with pain (Duggleby, 2000; Fehring et al., 1997), coping with terminal illness (Lin & Bauer-Wu, 2003) and increasing life-satisfaction (Hermann, 2007). Patients’ needs of prayer have been emphasised as the most important spiritual need near the end-of-life (Hermann, 2007). In this thesis ICU nurses did not focus on patients’ religious needs, and very few nurses in nursing homes did so (II). However, spiritual needs are much more than formal religion (Hermann, 2007), and the nurses in the ICU focused on hope and meaning (I) and in nursing homes they were concerned about patients’ needs for being prepared for what was coming, which could include existential questions (II) (cf. Strang et al., 2002). In both settings the nurses often found it difficult to talk about spiritual issues because they did not know the patients’ desires, and therefore avoided talking about it. The need to improve the care of spiritual needs for patients at the end of life has previously been shown in other studies (de Araújo et al., 2004; Hanson et al., 2002; Hermann, 2007). This study highlights the importance for nurses to be highly aware of these needs also for patients on the edge of life. To recognise these needs requires that the nurses are open, available and have the courage to support the patients in their struggle for preparation, hope and meaning (cf. Euswas & Chick, 1999).

Meeting the patients’ needs for dignity (I, II) was highlighted in this thesis as good nursing care, which was not a surprising finding. Nursing literature claims that nursing care is rooted in the inherent dignity of individuals, and respect for patients’ dignity is a fundamental value in nursing care (Fry, 1994; ICN, 2001), as well as in the philosophy of end-of-life care (Chochinov, 2002; Latimer, 1991). Several previous studies have also highlighted the maintenance of patients’ dignity in end-of-life care (Chochinov et al., 2002; Enes Duartes, 2003; Franklin et al., 2006; Kirchhoff et al., 2000; Soderberg et al., 1997; Street & Kissane, 2001; Wilkin & Slevin, 2004). According to the findings in this thesis, several losses were described as having an influence on the patients’ dignity: loss of control, independence and consciousness (II, III) (Chochinov et al., 2002; Randers & Mattiasson, 2003; Shotton & Seedhouse, 1998; Storch, 2004). Due to these losses the only way for many patients to convey themselves was through their bodies, and touching their bodies could often be the only way for nurses to reach into them (cf. van Manen, 1999). This may be one reason why the nurses focused a great deal on bodily care when describing the nursing care that aimed at preserving the patient’s dignity (I, II). The nurses also directed their care to protecting the patients’ privacy and personhood. Similar findings are shown by others who have studied dignity and/or end-of-life care (Bayer et al., 2005; Franklin et al., 2006; Matiti & Trorey, 2004; Seedhouse & Gallagher, 2002).

The nurses’ concern with touching the patient is worth reflecting upon. It is argued that the loss of the habitual skilled body can lead to a feeling of being foreign and like a thing (Benner & Wrubel, 1989; O’Loughlin, 1999). The ICU nurses focused on their hands when caring for these

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patients (I). Both research (Eastabrooks, 1989; Eastabrooks et al., 1992; Routasalo & Isola, 1998) and professional literature (Benner, 1984; McMahon & Pearson, 1991), have stressed the value of nurses’ hands as a conscious use of them can be therapeutic, caring and a source of the patient’s comfort and safety. Nurses’ use of their hands on the patients as embodied beings (Merleau-Ponty, 1997/1945) and by that confirming their sense of being (Madjar, 1997) is extremely important to patients on the edge of life to validate them as persons, giving hope and reminding them about being alive. Nurses’ un-reflected or non-caring hands can run the risk of missing important information, or be experienced as an invasion, which reduces the patient’s sense to only being an object (Lawler, 1997). Hence, touch as a professional tool could be a valuable topic in courses for nurses in ICUs and nursing homes, as they so often are responsible for patients on the edge of life.

The meaning of being a nurse for patients on the edge of life

The nurses both in ICU and nursing homes expressed professional pride for having the official mandate to care for patients in one of their most vulnerable periods of life (III, IV). They felt privileged to come close to a suffering or dying person and felt their work rewarding because it gave experiences which could contribute both to their personal and professional development (IV). Similar positive experiences of caring for dying people have been found in other studies (Rosser & King, 2003; Wallerstedt & Andershed, 2007). However, in this thesis the work with patients on the edge of life also was described to be challenging and burdensome, which was especially rooted in the uncertainty the nurses often experienced with regards to the patients’ situation. Such a paradoxical experience in the care of dying patients has been found also in other studies, even if uncertainty has not been described as the reason for the negative experiences (Hayes, 2004; Kirchhoff et al., 2000; Palda et al., 2005; Pattison, 2004).

The starting point in this thesis was related to questions about curative treatment or not. These questions could be answered by ‘yes’ or ‘no’ or ‘do not know’. An outstanding finding in the two contexts studied was the nurses’ experiences of ambiguity of both certainty and uncertainty Being certain mostly seemed to concern nursing care related to the patients’ needs and situation (I, II), even if they also could be uncertain about what patients’ wishes were and how to support them. Uncertainty seemed most often to be related to what was ‘right’ to do with regards to withholding or withdrawing treatment (III, IV), even if they also often described their certainty related to under- or over- treatment of patients and deficiencies in the collaboration around the patient (III, IV). Uncertainty has previously been described in an ICU setting as a ‘defining feature’ in end-of-life decisions by Oberle & Hughes (2001). Having control over the situation was a part of the nurses’ intentions (III, IV) when caring for patients on the edge of life, whereas the lack of control they so often experienced gave them feelings of discomfort, powerlessness and moral uncertainty (cf. Chapple, 1999; Cronqvist et al., 2001; Erlen & Frost, 1991). Wurzbach (1996) found in a study among long-term care nurses that moral uncertainty was their most uncomfortable feeling in their work, which also lead to feelings of powerlessness. Moral certainty has been found to relate to ‘standing up’ and ‘speaking up’ for what nurses consider being the best for the patients (Wurzbach, 1999). In this thesis the nurses most often tried to stand up for what they thought was the patient’s interests with regards to physicians and relatives, but sometimes they did not. Their uncertainty and feelings of powerlessness might be reasons for their silence when they faced inappropriate treatment of patients due to insufficient systems. Experiences of loneliness, which were described by the nurses in both settings, and especially in nursing homes, might also have influenced their possibilities to be clear - sighted and ‘right’ in their certainty (cf. Wurzbach, 1999).

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The nurses´ driving power seemed to be anchored in doing good in accordance with the patients’ wishes and conditions; and if they could not, a feeling of pessimism (III), shortcomings and guilt was experienced (IV), especially when treatment or care caused the patients what they interpreted as meaningless suffering. Witnessing suffering is found as the core problem for nurses when caring for patients at the end-of-life (Oberle & Hughes, 2001). Studies have shown that when nurses were hindered by others from giving the good care they intended to give, or had to carry out undesired treatment, they were exposed to value conflicts and moral distress (Georges & Grypdonck, 2002; van Rooyen et al., 2005; von Post, 1998). In this thesis especially the nurses in nursing homes described their feeling of guilt when exceeding their professional mandate in order to do the best for the patient (IV). Several studies have shown that nurses felt ashamed, when they did not have courage enough, to influence and perform the care they wanted to (Oberle & Hughes, 2001; Puntillo et al., 2001; Soderberg & Norberg, 1993; Sundin-Huard & Fahy, 1999). The heavy burdens the nurses in this thesis have illuminated in the care for patients on the edge of life, should be a finding to be noted, as this might lead to flight from the place of work, health risks and burn out (Altun, 2002; Sumner & Towsend-Rocchiccioli, 2003; Meltzer & Huckabay, 2004). This could mean a lack of highly competent nurses to perform good nursing care, both in ICUs and nursing homes.

Nurses’ interpretations of the patients’ state was experienced as crucial for good nursing care (II, III), but was especially emphasised in the ICU by the nurses´ continuous vigilance (III). Vigilance can be understood as ‘alert watchfulness’ (Fairman, 1992). It is found to be a dimension of ‘the art of ICU nursing’ as being available and protecting the patient from danger, and is incorporated in the nurse’s perceptual presence (Gramling, 2004). However, such a presence was not always easy to bring about for the ICU nurses in the present study (III), as they often experienced a heavy workload including the interpretative responsibility they also had for the absent physicians. Cronqvist et al. (2004) have found that tensions occur in the ICUs between a task-oriented nursing care and a genuine concern for the well-being of the patient. In the same study nurses pointed at the demanding minute-by minute decisions, and ‘signal-telling’ about wrong situations. This ‘signal-telling’ is described as a form of intuitive knowledge, which is shown to be a high level of competency (Benner, 1984). This might be comparable with the competence the nurses in this thesis possessed. The nurses in both ICU and nursing homes described that they had specific knowledge which made them know the patients’ situation and when treatment was wrong. This finding has support in other studies showing that nurses often are found to be the first to recognise a patient’s transition from possible recovery to the phase when further curative treatment would be futile, they came to conclusions earlier than physicians (Copeland-Fields et al., 2001; Randall Curtis & Patrick, 2001; Frick et al., 2003), and they often were privy to valuable information about the concerns and values of the patients and their families (Hamric & Blackhall, 2007). This underlines that nurses have important contributions to decisions about whether to withhold or withdraw curative treatment.

This thesis really highlighted the nurses’ comprehensive responsibility, which included the nurses’ experiences of themselves as ultimately accountable for patients, and also their self-assumed duties, to at times carry out tasks that were physicians’ responsibilities (III, IV). This is in accordance with a study by Peter et al. (2004) showing how nurses felt forced to pick up the work of the absent physicians. Further, the nurses in this thesis also had to adjust their care to medical orders, institutional requirements, cooperation, patients’ (supposed) and relatives’ desires. This put them in an ‘in-between-position’ which previously has been described as giving possibilities to influence the decisions and perform good nursing care (Bishop & Scudder, 1996). However, the findings in the current thesis stressed that this in-between position could increase nurses’ and patients’ burdens as well (cf. Varcoe et al. 2004). For instance, the nurses in nursing homes sometimes handled such situations by taking the responsibility in their own hands and

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kept the patients away from physicians’ judgements to prevent them from what they perceived as being ‘wrong’ decisions. According to Bishop & Scudder (1996), such actions are ‘risk taking,’ but excellent nursing practice as they aim to foster patients’ well-being. This might have happened to the patients in this thesis, but it might as well have happened that the patients in nursing homes were harmed as they were withdrawn from medical judgements and treatments. In addition, the nurses put themselves at risk when they exceeded their professional responsibility (cf. The Health Personnel Act, 1999).

Opportunities and hindrances to carrying out good nursing care

Nurses are trained and expected to respond to the needs that the patients define, or to discern their unspoken needs (Henderson, 1969, 1978). In this thesis this was often shown to be difficult, and the gap between nurses´ ideals and ambitions and the reality was obvious. This ideal-reality gap is well-known and has been reported in other studies (Fagermoen, 1997; Hopkinson et al., 2003). It should be time to question why nurses do not succeed in carrying out the good nursing care, which they know so much about and are so committed to. Of great importance in this thesis were the findings which stated that good nursing care depends not only on the individual nurse, but also on relational and organisational factors. Even if this fact is already rather well documented in previous research (Aspinal et al., 2005; Bern-Klug et al., 2004), it is still important to highlight it as a concern for those in power in the health-care system.

A striking finding was related to staffing. The ICU nurses highlighted sufficient staffing as a precondition for good nursing care, but they most often met the staffing-problems related to physicians’ heavy workloads and absence (III). In the nursing homes the difficulties in carrying out good nursing care due to insufficient number of competent personnel were obvious. This meant that the patients on the edge of life could be left without adequate support and care with regard to their perceived needs. As such problems in nursing homes already has been reported in other studies (Forbes, 2001; Froggatt & Hoult, 2002; Goodridge et al., 2005; Reynolds et al., 2002) the findings in this thesis further stress the importance for politicians and health care managers to make efforts to solve the staffing problems related to all groups of personnel.

Inadequate level of knowledge among the nursing staff, which was pointed out in both contexts but especially in the nursing homes, was stressed as a hindrance for good nursing care, and illuminated the need for improvement. In both contexts the nurses asked for more knowledge to enhance their competencies to care for these patients, for instance in professional ethics and palliative care. The importance of sufficient staffing, time and knowledge in nursing care has also been pointed out previously, as this is shown to have a major impact on the quality of care for the patients (Bowers et al., 2000; Kayser-Jones et al., 2003; Ramirez et al., 1998; Wetle et al., 2005), the stress level (Cronqvist et al., 2001) and job-satisfaction for the personnel (Stone et al., 2006; Sung et al., 2005).

Nurses’ dependence on and collaboration with physicians was a notable finding in this thesis. How well this collaboration functioned in the ICU and the nursing homes was experienced as imperative both for how professional the nurses could act for the patients’ best and for their own job-satisfaction and inner harmony. This may be compared with findings from other studies, showing the impact of good collaboration with physicians on nurses’ experienced job-satisfaction (Baggs & Ryan, 1990; Hamric & Blackhall, 2007; Larrabee et al., 2003). In this thesis nurses pointed out disagreements with physicians about their decisions on withholding or withdrawing treatment as a problem (cf. Bucknall & Thomas, 1997; Frick et al., 2003). The disagreements were mostly related to over-treatment in the ICU, which also was found in a study of Puntillo et al. (2001). In the nursing homes both over- and under-treatment could be sources

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of disagreements, a problem which also has been illuminated previously (Strumpf & Paier, 1992). In this thesis such disagreements fuelled the nurses’ with uncertainty. Levy (2001) has stated that discomfort of the caregiver when facing uncertainty is a major obstacle to end-of-life care. This highlights the risk for nurses, in their search for certainty, to claim for hastening or delaying of withholding or withdrawing treatment. When caring for patients on the edge of life, it would therefore be both valuable and necessary if nurses could develop some degree of comfort with uncertainty.

It is already well known that nurses consider their involvement in end-of-life decisions as insufficient (Asch et al., 1997; Cardoso et al., 2003; Ferrand et al., 2003; Robichaux & Clark, 2006). The findings in this thesis showed both the lack of nurses’ being consulted in the discussions about whether to withhold or withdraw curative treatment, their deep wish to take part, and their professional conviction about the importance of their participation in order to meet the suffering patients’ needs. This supports the notion of the value of teamwork and nurses’ involvement in decisions in the end-of-life care, which has already been highlighted (Campell & McHaffie, 1995; Foster & McLellan, 2002; Ho & English, 2005; Robichaux & Clark, 2006). Further, it has been claimed that if nurses are absent from the end-of-life decision-making process, they are deprived of their legitimate role in decision making and care planning for patients. It also implies a great risk that the holistic caring perspective of nursing will be missed (Forbes et al., 2000).

The lack of routines for discussions, clarification and documentation of patients’ preferences related to life-sustaining treatment was strongly emphasised as a hindrance to good nursing care. The ICU nurses stressed that patients’ woken time should be used for clarifications, while the nursing home nurses felt that patients’ desires should be clarified while they were still competent, but in both settings this seldom occurred. The nurses also underlined the necessity for discussions on a formal and regular basis among health-care personnel and relatives to reach a consensus about the course of treatment and care. This finding is supported by other studies in both ICU and nursing homes (eg. Badger, 2005b; Wetle et al., 2005). However, such routines were not put into system (III, IV). Especially in nursing homes the scarce time of attendant physicians was highlighted as a barrier for the discussions. This finding could also illuminate cooperation problems and resistance to discuss such difficult questions as withholding or withdrawing treatment. Nelson, (2006) has reported that denial of death, unrealistic expectations for therapies and preoccupation with an unattainable level of prognostic certainty, delayed focus on palliative needs. Further, she stressed that lack of cooperation in the health-care team could act as barriers to end-of-life care. As palliative care is based on collaboration and has a holistic approach to the patient and the family (Davies & Higginson, 2004), an integration of palliative care into the care in both ICUs (Owens, 2005) and nursing homes (Froggatt et al., 2002) might enhance openness and facilitate the nursing care for patients on the edge of life.

The nurses emphasised the lack of clear goals as a crucial hindrance to carrying out good nursing care. Unclear goals might contribute to inconsistent nursing care such as giving life-saving and terminal care to the same patient simultaneously (I, II). Vague goals are shown to be stressful to nurses (cf. Hopkinson et al., 2003; Wilkes et al., 1998), and can contribute to giving false hope and hinder the patients’ and their families’, but also health-care personnel’s possibilities to prepare for and accept that death is imminent (Robichaux & Clark, 2006). The importance of clear goals is also highlighted (Wetle et al., 2005) as it contributes to avoidance of inconsistency in therapies and enhance palliative care in time (Scanlon, 2003), and is improving end-of-life care (Bern-Klug et al., 2004). However, since assessing long-term goals for patients on the edge of life is almost impossible, constant cooperation within the team for frequent determination of short-time goals will be of great importance for good nursing care.

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The need for continuity in the care for patients at the end-of-life has previously been highlighted (Kirchhoff et al., 2000). However the lack of continuity was often stressed as a problem in both ICU and nursing homes, as it could lead to misinterpretations and misunderstandings that increased the patients’ suffering. According to Coombs & Ersser (2004), continuity in nursing care may put nurses in an ideal position to assess and monitor the patients. In this thesis a delivery system without an explicit patient assignment could hinder the nurses from obtaining as complete a picture as possible of the patient. Continuity related to physicians was a major problem both in the ICU and the nursing homes due to their responsibilities outside the ward (I - IV) and frequent changes of attendant physicians (IV). The nurses considered that this hindered the physicians from getting a consistent and comprehensive understanding of the patient’s situation which was a precondition for making appropriate medical decisions (cf. Hanson et al., 2002). It also hindered relatives from getting adequate information (Wetle et al., 2005). In accordance with several other studies, this thesis highlighted continuity as being important for cooperation with the individual patient (when possible), with relatives and among health professionals to enhance appropriate treatment (Coombs & Ersser, 2004; Hanson et al., 2002; Heyland et al., 2000; Kirchhoff & Beckstrand, 2000; Kirchhoff et al., 2000; Reynolds et al., 2002; Singer et al., 1999).

Death was always ‘around the corner’ for the nurses in this thesis. Previous studies have stressed that an ever-present confrontation with dying might be a reminder of one’s own death (McClement & Degner, 1995), and a proof of one’s failure to save life as a nurse (de Araújo et al., 2004). Wallerstedt & Andershed (2007) highlighted the demands on the nurses to handle frequent changes between caring for patients in a palliative phase and in a curative phase. The nurses’ role in this thesis could be even more challenging as the patients were neither clearly in a curative nor in a palliative phase. In addition the situation demanded involvement as the patients appealed strongly to the nurses as fellow human beings, and it was often difficult to find a balance between nearness and distance. Sometimes the nurses needed to protect their own sanity. Some of the reported self-protecting strategies might be incompatible with good nursing care, for instance depersonifying the patient, withdrawal, or rationalisation to construct acceptable explanations for their actions. Similar coping mechanisms are found by others (Badger, 2005a; McVikar, 2003; van Rooyen et al., 2005). The nurses also coped with the situations by trying to block out their feelings. Such self-protecting strategies might minimise the nurses’ emotional stress, but lead to an unconcerned and cold attitude towards the patients (de Araújo et al., 2004).

The nurses in this thesis asked indeed for support. The comprehensive findings give support to the assumption that if several of the previously discussed hindrances had been overcome, the nurses’ needs for support might have decreased; for instance discussions about the course of treatment and care, participation in decision-making, cooperation, and sufficient staffing could have diminished the nurses’ experiences of strains and uncertainties. As the nursing care for these patients also was in some ways ‘on the edge’, with emotional strain, together with nurses’ deep involvement with the patients, the nurses might also benefit from clinical group supervision. Clinical group supervision has been shown to give the individual nurse the opportunity to take a step back and reflect upon her daily practice, learning from others by sharing experiences and thus gain personal knowledge about herself and professional development (Arvidsson et al., 2001; Cronqvist et al., 2006; Hansebo & Kihlgren, 2004; Hermansen et al., 1992; Magnusson et al., 2002; Teslo, 2000). A study of clinical supervision among hospice nurses showed that clinical group supervision can give nurses support and reduce burdens related to their work and more easily identify supporting networks (Jones 2003). Another method for strengthening nurses in their demanding responsibility for patients on the edge of life would be assertiveness training, which has been shown to encourage nurses to retain

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their professional values without burning themselves out (Kirkpatrick & Forchuk, 1992; Timmins & McCabe, 2005).

To find space for professional support to nurses aimed at enhancing safety and good nursing care for the patients is not only the responsibility of each nurse (NSF, 2001), but it is also the responsibility of health care managers and politicians (The Health Personnel Act, 1999; Working Environment Act, 2004).

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Methodological considerations

Phenomenology and phenomenography are approaches that are found to be valuable in nursing research (Benner, 1994; Sjöström & Dahlgren, 2002; Walton & Madjar, 1999). In this thesis a phenomenological approach was chosen in order to get a deepened understanding of good nursing care for patients on the edge of life (I, III, IV). A phenomenographic analysis was adopted (II) to elucidate variations related to what the participants emphasised as good nursing care and how they performed it. As such, this thesis brings information about both the essential structures and the meaning of good nursing care for patients on the edge of life (I, III, IV), and variations through descriptions of the qualitatively different ways the group of participants understood it (cf. Larsson & Holmström, 2007). However, both phenomenology and phenomenography are concerned with the participants’ experiences of the phenomenon under study, which included questions related to both depths and variations.

Researcher credibility (Patton, 2002) was of special importance as all the studies (I-IV) were carried out by means of qualitative methods. As this criterion is concerned with the researchers’ professional and personal preunderstandings and the risk of their influence on data collection and analysis (Larsson & Holmström, 2007; Nyström & Dahlberg, 2001; Sandelowski, 1986), awareness of these aspects was of utmost importance from the beginning and throughout the project. The views in the research group were that preunderstandings cannot be totally set aside. This view is in accordance with Colaizzi’s (1978), which states that preunderstandings are necessary for initiating and completing a research project. However, they have to be brought to the fore, scrutinised as far as possible and ‘bridled’ throughout the whole research process, (Colaizzi, 1978; Dahlberg & Dahlberg, 2004; van Manen, 1997). The fact that RH, who carried out the interviews, had no experience of ICU care might have strengthened the credibility, but might also have limited the opportunities to detect important aspects (cf. Colaizzi, 1978). However, the research group, in which such experience existed, cooperated during the whole research process and continually challenged their humility, openness and self-awareness related to the phenomena under study.

Credibility can also be related to the choice of participants. Both in study I and II nurses were challenged to describe the patients’ situation and needs. Strictly speaking, this is contradictory to phenomenological research and the idea of understanding phenomena by means of ‘lived experiences’ and going to ‘the things themselves’. It is widely accepted both within nursing and phenomenological research that another person cannot be understood completely (Benner, 1994; Marton & Booth, 1997; Travelbee, 1971). However, most of the patients in focus in this thesis were described as extremely fragile and voiceless, and in the care of these patients nurses mostly had to rely on their own interpretations and assessments. This use of nurses to give silent patients on the edge of life a voice finds support in (Gadow, 1989) who has argued that interpretations of the needs of a completely dependent patient may be those of a nurse. At the same time it is necessary to consider the findings with humility since it is impossible to assure that the participants were able to distinguish their own needs from those of the patients. Drazden (2003) has pointed at the possibilities that one’s own biases might influence one’s understanding of a phenomenon and create self-fulfilling prophecies. The findings might have been different if patients or relatives had been interviewed. However, similarities in the findings of other studies about patients’ situations and needs at the end-of-life strengthen the credibility of the findings in this thesis (I, II) (Aspinal et al., 2005; de Araújo et al., 2004; Beckstrand et al., 2006; Enes Duartes & de Vries, 2004; Hanson et al., 2002; Kirchhoff et al., 2000; Kuhl, 2002; Shih et al., 2006). By interviewing the individual nurse twice (II, IV) and each group four times (I, III), the participants were given ample opportunities to clarify misunderstandings, discover other

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experiences related to the aims and further deepen them. Moreover, the group members had common frames of references from the same ICU and could validate each other’s view of the patient.

Two of the phenomenological studies (I, III) were conducted by means of group interviews (cf. Benner, 1994; Haldórsdóttir, 2000). This conflicts with Webb and Kevern’s (2001) arguments that group interviews are incompatible with phenomenology since the group can hinder and contaminate descriptions of individual experiences. The experiences from data collection in the phenomenological studies in this thesis do not support Webb and Kevern’s (2001) opinion. The studies were anchored in interpretative phenomenology, where the essential idea is that human beings are involved and connected in a world with everything else that exists, and thus they are always influenced by something or someone. The interviews were conducted inspired by focus group methodology (Morgan, 1990) and methodology from group interviews as described by Benner (1994). The way the group interviews were conducted is considered to lead close to the phenomenon (cf. Benner, 1994).

According to Sandelowski (1986) fittingness is concerned with avoidance of selection biases. The participants in this thesis were purposefully sampled in accordance with several inclusion criteria which intended to bring depth (I, III, IV) and variation (II) to the understanding of nursing care for patients on the edge of life. However, in all studies the participants were included on the basis of their reported interest in participating. Sandelowski (1986) has pointed to possibilities of an ‘elite bias’ in qualitative studies, meaning that those who act as participants are the most articulate and accessible or high-status members of their group. It is impossible to ensure that this did not happen in this thesis. The sample met the inclusion criteria except in relation to gender and the fact that no participants from nursing homes worked night shift. Especially this might have weakened the trustworthiness in the phenomenographic study.

The numbers of participants in phenomenographic studies is seen to be important to find variations, but the numbers differ among studies (Hyrkäs & Paunonen-Ilmonen, 2001; Larsson & Holmström, 2007; Lepp et al., 2003; Ramritu & Barnard, 2001). In this thesis the findings (II) show the possible variations in the conceptions of fourteen participants, and the outcome space was considered to give valuable information. A limitation might have been that nurses from only one ICU and two nursing homes participated. However, the sample is considered as adequate because lived experiences are always unique and can never be iterated. Sandelowski (1986) has argued that representativeness refers to the data rather than to the participants or setting per se. The data represented both depth and variation and were considered as adequate to reach the aim of the thesis.

According to Giorgi (1994) memberchecking is not recommended in phenomenological studies because of differences in the use of theories, syntheses and professional language between the researcher and the participants. Also Uljens (1996) has argued that the categories of descriptions are the researcher’s way of expressing the variations in conceptions and their internal relations. The participants in this thesis were nurses who were well acquainted with the professional language used by the researcher, and fittingness was considered strengthened inasmuch as the participants responded on the preliminary findings (I, III) and final findings (III) as recommended by Colaizzi (1978). However, the participants were not given the opportunity to validate the final findings in study I, which might be considered as a weakness. The summaries made together with the participants in relation to the interviews in the nursing homes (II, IV) might have strengthened fittingness (Lepp & Ringsberg, 2002), but they were not given the opportunity to respond to the final findings (van Manen, 1997). However, as other nurses in ICUs, nursing homes and other caring facilities have recognised the findings (I-IV), they can be assumed to fit other contexts (Bowden, 1995; Sandelowski, 1986). Fittingness is also considered

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as strengthened in view of the fact that the findings are supported by quotations (cf. Benner, 1994; Lepp & Ringsberg, 2002).

Finally, it is worth pointing out that the vague differences between the concepts of ‘curative –’, ‘life sustaining –’, and ‘life supporting -’ treatment might have influenced the trustworthiness negatively. However, ‘curative treatment’ has been used as consistently as possible in relation to the interviews and the interviewees.

Concerning auditablility (Sandelowski, 1986) a series of attempts have been made to outline the decision trail used by the researchers throughout the project (Tantano Beck, 1993). Whether this has been sufficient is up to the judgement of the reader.

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Conclusions

• Questions related to withholding or withdrawing curative treatment are never questions of whether to give nursing care or not, but they have great impact on nursing care when they occur.

• The situation for patients on the edge of life was from the nurse’s perspective extremely

burdensome with wide-ranging suffering and comprehensive needs for nursing care. The patients’ situation and needs for nursing care mostly were interpreted as similar when being on the edge of life, irrespectively of very disparate care settings.

• Good nursing care for these patients was to care for the individual patient based on

his/her situation and needs, with focus on alleviating his/her burdens as far as possible and preserving his/her dignity.

• Being a nurse for patients on the edge of life had many similar patterns in ICU and nursing homes.

o The nurses’ ideals and the reality were often contradictory. They knew what good nursing care should be, but they often failed entirely to carrying it out. The nurses experienced themselves to be of imperative importance for the patients’ living or dying. Their commitment and drive to help was high, and they were proud when they succeeded in their care. Loneliness, too much responsibility, and being pulled between opposite poles were common experiences in their daily work with patients on the edge of life.

o Ambiguity of both certainty and uncertainty accompanied the nurses in their work. Being certain mostly seemed to concern nursing care related to the patients’ needs and situation and uncertainty to what was ‘right’ to do with regards to withholding or withdrawing treatment. This ambiguity was such an outstanding finding that it might be viewed as an ontological structure in nursing care for patients on the edge of life.

o Nurses’ special knowledge and opportunity to interpret patients’ needs for nursing

care and for appropriate treatment related to withholding or withdrawing treatment should be reason for including them on regular basis in the decision-making process.

o When the patients’ needs or wishes were unmet, the nurses experienced

pessimism, shortcomings and guilt and their need for professional support was obvious. Some of the nurses’ self-protecting strategies might have been contradictory to good nursing care. They could exceed their professional bonds for the patients’ best, which might have helped the patients, but could have put them at risk of being harmed as well.

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• Cooperation and communication in the team and with relatives and patients are imperative for good nursing care for patients on the edge of life, but was described as insufficient in this thesis. Furthermore, deficiencies concerning staffing, competency, clarification of the patients’ preferences, clear goals, and nurses’ formal role in decision-making were hindrances to performing good nursing care.

• Professional support to nurses should be of outmost importance to assure good quality nursing to these patients.

• This thesis shows that good nursing care for patients on the edge of life includes a

wide-ranging understanding of nursing care. Whether the patients could receive good nursing care or not did not only depend on the single nurse, but was also anchored in opportunities and hindrances on a relational and an organisational level.

• If good nursing care is expected to be realised, the findings should not only challenge

the individual nurse, but also the whole health-care team, managers and politicians.

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Further research

There is a need for more research about ‘being on the edge of life’. Little information exists about the practice of withholding and withdrawing curative treatment in Norway, so therefore it would be interesting to initiate a survey study with this focus. To further assess the trustworthiness of the findings in this thesis, a study with similar aims and other methods could be valuable. Both qualitative and quantitative studies could be performed among enrolled nurses, relatives, physicians, nursing leaders and politicians about their experiences and views on the treatment and care for patients on the edge of life. This might bring knowledge and insight into the phenomenon ‘on the edge of life’ and what areas to be further improved. The nurses’ needs for support when they care for patients on the edge of life have been found to be extensive in this thesis, but what kind of support and its effects is not sufficiently known. Therefore, an intervention study with support for the nurses would be interesting. Furthermore, as this thesis has highlighted areas for improvements in both ICUs and nursing homes, an action research study with focus on developing collaboration and competencies could be of great value. Studies about nurses’ certainty contra uncertainty and its influence on the nurses themselves and their nursing care for patients on the edge of life would be of a special interest.

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Acknowledgements

This thesis has shown that good nursing care does not only depend on the individual nurse. This has also been the fact in my journey with this thesis. I would never have managed alone, and I am grateful to a lot of people who have been involved. These include:

The nurses who so generously shared their experiences, and supported me in the process by their keen involvement in the project. I feel privileged at being a listener to all their experiences. I would also like to thank the managers at different levels in the institutions for giving me permission to conduct the studies and for their practical support.

Professor Elsy Athlin, my brilliant principal supervisor, for being by my side from the start until this day, and sharing your knowledge, experiences and wisdom. I am grateful for your clear-sightedness, engagement and creativity, which have shown me new ways, but also much work. I appreciate your honesty, and for always having challenged me in a supportive way. Adjunct professor Birgitta Hedelin, my highly competent assistant supervisor, for your careful, caring, and well - prepared supervision, and for challenging me to discover new interpretations and alternatives. I thank you for ‘being there’ and for excellent and quick responses to my questions and writings. Thank you both for believing in me. Professor Elisabeth Severinsson, for encouraging me to start this project, giving scientific supervision and practical arrangements, which opened the doors for me into the world of researchers.

Ian Watering for his language revisions, patience, encouragement and quick responses to several manuscripts in my pressed time. Jenette Palm and Ellinor Larsen for language revisions during the first period of my doctoral studies. I am sincerely grateful to Anne-Cathrine Børke Overskott, Heidi Kristiansen, Lene Svendsen, Berit Østby Bakken and Klaus Jøran Tollan for the invaluable help with the references, and to Bente Giset for professional support with figures and layout.

My fellow doctoral students, Bente W., Carina, Catarina, Fia, Ingrid, Kaisa, Kristina, Linda, Maria, Mia, Mona, Monica, Sigrid, Vigdis. A special thanks to Bente Thyli for accompanying me during long and tiring drives between Hamar and Karlstad, and for interesting discussions, support and silent periods in the car.

Bror Anders Johnstad for support and valuable discussions. My dearest friend, Mette Karoliussen for valuable responses to manuscript, highly treasured discussions, and fun. My previous rector, Berit B. Solvang, for important advices and for always giving me a sense of being valuable. Inga and Kurt who opened their doors and welcomed me in my stays in Karlstad, all my dear friends and ‘sister’ Eli for encouragements and practical help.

My husband Svein for your endless patience, unlimited love, your engagement, encouragements, and helpfulness during all these years, and especially during the last months. My dearest daughter Line for all your help with references and thoughtfulness during times of stress, and to my son-in-law, Torgeir for letting me borrow so much of your beloved Line’s time and energy. My dear Lars Martin and Siri for showing your consideration and interest in the project and for valuable support. My precious and beloved grandchildren, Jonas, Gabriel and Helene for reminding med about the meaning of life. I love you all.

Colleagues and leaders at Hedmark University College for financial and practical support.

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References

Ackermann, R. J., & Kemle, K. A. (1999). Death in a nursing home with active medical management Annals of Long Term Care, 7, 313-319.

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Karlstad University StudiesISSN 1403-8099

ISBN 978-91-7063-136-8

Nursing care for patients on the edge of life

The advances in medicine and technology have supplied the health-care system with almost unlimited opportunities to maintain patients’ lives and support them through life-threatening illness. Sometimes it is difficult to decide whether further treatment may result in a positive outcome, and for some patients the treatment seems futile. In such situations, questions whether to withhold or withdraw curative treatment often are raised. Much research has been conducted about withholding or withdrawing dif-ferent kinds of treatment. The findings show that decisions related to withholding or withdrawing treatment often are delayed, which might expose the patients to prolonged suffering. The research also shows that nurses’ participation in the decision-making process varies. A great amount of research has also been performed related to end-of-life care. The findings show that the care often is good, but there are variations, and many studies point at several areas that need to be improved. As nursing research is almost lacking about nurses’ experiences of nursing care for patients on the edge of life, this thesis was performed. The edge of life is understood as the phase from when questions are raised whether to withhold or withdraw treatment until the patient shows clear prognostic signs of recovery or dying and a decision is made concerning curative treat-ment or not. The thesis is an attempt to contribute to the development of knowledge and understanding of nursing care for patients on the edge of live in ICUs and nursing homes. I hope that the findings will contribute to the development of a high quality of care for this afflicted group of patients.