A comprehensive picture of palliative care at home from the people involved

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Abstract

The purpose of this study was to identify the comprehensive picture of palliative care in the home, as experienced by the people involved. The study is a secondary analysis of three phenomenological studies including six cancer patients, six next of kin and six district nurses. Data were collected in qualitative interviews using an interview guide. The interviews were tape-recorded and transcribed verbatim. In this secondary analysis, data were analysed by hermeneutic analysis guided by Gadamer. The guiding questions during the reading were: Is there an advantage receiving palliative care at home? Is there a disadvantage receiving palliative care at home?

The findings indicate that the advantages of palliative care at home is; striving for normal life, including the care in the home composed of physical care and emotional/mental care. Striving for normal life also includes emotional feelings, safety and resources and policies which regulates this activity. Disadvantages of palliative care at home are commitment, composed of adaptation and extra work, and demands, composed of frustration and uncertainty. If the people involved are to be able to manage the situation and optimize living while dying, there must be support and resources facilitating the situation.

Zusammenfassung

Das Ziel dieser Studie bestand darin, die häusliche palliativmedizinische Betreuung umfassend und aus der Sicht der betroffenen Patienten zu untersuchen. Bei dieser Studie handelt es sich um eine Sekundäranalyse dreier phänomenologischer Studien, an denen sechs Krebspatienten, sechs Angehörige sowie sechs Gemeindekrankenschwestern beteiligt waren. Die Daten wurden in qualitativen Interviews unter Verwendung einer Interview-Richtlinie erhoben. Die Interviews wurden auf Band aufgenommen und wörtlich niedergeschrieben. Die Daten wurden in dieser Sekundäranalyse durch hermeneutische Analyse ausgewertet. Während der Interviews wurden folgende Hauptfragen gestellt: Welche Vorteile bietet eine zu Hause durchgeführte palliativmedizinische Betreuung? Welches sind die Nachteile?

Die Ergebnisse dieser Studie zeigen, dass eine häusliche palliativmedizinische Betreuung dem Patienten Vorteile bietet: Dank der körperlichen und seelischen Betreuung im häuslichen Bereich erhält der Patient die Möglichkeit, ein möglichst normales Leben anzustreben—unter der Voraussetzung, dass für eine solche Betreuung entsprechende Ressourcen zur Verfügung stehen. Der Nachteil einer häuslichen palliativmedizinischen Betreuung besteht darin, dass die betreuenden Personen einen erheblichen persönlichen Einsatz leisten und einen großen Arbeitsaufwand sowie Frustrationen und Ungewissheiten hinnehmen müssen. Patienten, die wissen, dass sie sterben werden, können nur dann eine Verbesserung ihrer Lebensqualität anstreben, wenn sie dabei aktiv unterstützt werden und wenn entsprechende Ressourcen zur Verfügung stehen.

Introduction

In 1990, the World Health Organization (WHO, 1990) formed a definition of palliative care, stating that palliative care is the active total care of patients whose disease is not responsive to curative treatment. Control of pain and other distressing symptoms, and of psychological, social and spiritual problems is paramount. The goal of palliative care is the achievement of the best possible quality of life for patients and their families. Palliative care has also the aim to enable the patients to die with dignity and help the families during bereavement (WHO, 2004).

Palliative care is not connected with specific buildings; hence it describes a caring philosophy. In the beginning, palliative care was exclusively meant as the care of dying cancer patients but has, with time, expanded to include mitigating care of all dying people, no matter the diagnosis (SOU, 2000; Doyle et al., 1998). During recent years there has been a change in where people die, from hospital to special types of housing and own homes. The decreasing number of beds in hospitals, together with the extended home-care system, indicates that many more people will die in their own homes (SOU, 2000). Primary health-care teams are the teams in Sweden who nowadays are responsible for the greater part of the extended home-care system, providing palliative care at the patient's home. The team usually consists of a general practitioner, a district nurse and an assistant nurse. Accessibility to a physiotherapist, occupational therapist, almoner, priest and specialists in different medical areas is a prerequisite for providing good palliative care (Beck-Friis and Strang, 1993a, Beck-Friis and Strang, 1993b; Clark and Seymour, 1999). There are some criteria which must be fulfilled when using the term palliative care. It should be active care, providing care for the whole dying person; the next of kin should be involved and receive support and assistance and there should be several different forms of competence available for the care of the severely ill person. Assistance should be available 24 h a day (Beck-Friis and Strang, 1993a; Sheldon, 1997).

It may be argued that ‘home’ needs to be clarified. In the western world ‘home’ is built around some basic principles, such as ‘home’ being a social place including recognition and respect for traditional family hierarchies, as well as presenting a sense of social and community security. Home is the place that, symbolically represent a primordial place; the place where most of people first receive nourishment, psychological sustenance, the first education and help to overcome the first difficulties we face in life. Home is a place that represents social and physical security. The home environment may provide sick people with greater control over their lives and more comfort than medical institutions do (Di Mola, 1997; WHO, 1990, WHO, 2004).

Primary care teams providing palliative care are facing great challenges, including aspects such as communication, continuity, competency, team working, time, ethical issues, relatives and carers, and partnership.

There are communication challenges for the health-care professionals when the situation becomes clearly palliative for the patients and their families. There is a need to give the patients and their families confidence that they will continue to be looked after and will not be abandoned because the cancer disease is no longer curable (Doyle and Jeffrey, 2000; Robbins, 1997; Sheldon, 1997). If high standards of palliative care are to be obtained, continuity is required. Patients and their families need to build a relationship with the health-care professionals. These relationships are based on trust and confidence and allow both patients and their families to talk about their “hidden” fears (Doyle and Jeffrey, 2000; The, 2002). However, there is always the influencing factor that the patient and the family are talking about issues that they know the professional is specialized or most interested in and not what their ‘hidden’ fears are.

Health-care professionals need to keep up to date with developments in symptom control. They need to have confidence in each other and develop and improve their skills by listening to and working with colleagues (Jones et al., 1993; Doyle and Jeffrey, 2000). A multidisciplinary team approach is necessary if palliative care at home is to be performed sufficiently well (Doyle and Jeffrey, 2000; Twycross, 2003). Also, an investment of time is required when providing palliative care at home. Time is one of the resources which is limited and which generates ethical strain in health-care professionals. Co-ordination of visits, as well as the effective use of telephone contact may improve care (Doyle and Jeffrey, 2000; Twycross, 2003).

Furthermore, to enable patients and their families to have the best possible quality of life means respecting their autonomous choices. The choice of where to die is one of the most important issues for the patients and their families and needs to be explored sensitively. Primary care teams working with palliative care at home are confronted by a large number of ethical dilemmas and problems related to these existential issues (Doyle and Jeffrey, 2000; Randall and Downie, 1996). Relatives and carers are a challenge in themselves. The family members do not voice their own needs, as next of kin or as informal carers. Health-care professionals tend to ignore these needs (Kristjanson et al., 1996; Field and McGoughey, 1998; Doyle and Jeffrey, 2000). Palliative care is team work and involves forming a partnership with patients, families and health-care professionals. Partnership includes openness and honesty with patients and their families being informed and respected (Hileman et al., 1992; Doyle and Jeffrey, 2000).

In a recent study, Appelin and Berterö (2004) showed that the essential meaning of the patients′ experiences of palliative home care can be described as “uncertain safety”. This meaning of essence is explicated by four themes which are labelled: safe but unsafe at home, a sense of powerlessness, change of everyday life, and hope and belief in the future. The findings of the study point out the importance of well-functioning teamwork and resources to facilitate the patients’ experiences of safety in their own homes. It should be noted that the patient and his/her next of kin are members of the team and should also be treated in that way. Another study (Brobäck and Berterö, 2003) has described the experiences of the next of kin of the cancer patients receiving palliative care at home. A feeling of insufficiency is the phenomenon/essence, which permeates all the five themes: adjustment, awareness, being perceived as a person, emotional effects and feelings of uncertainty. Because the informal carer is a significant contributor to palliative care in the home, it is important to promote feelings of control and also self-efficacy. If palliative care in the home is to be motivated ethically, then it should be voluntary from the point of view of the next of kin and should be designed in such a way that he or she receives different forms of support during the care period. In a third study by Berterö (2002), the aim was to explore the meaning of palliative care according to the experience of district nurses. The essence of the phenomenon under study was identified as commitment, recognized by four themes: challenge, control, frustration and relationships. The nurses experienced a commitment, which was not in itself chosen, but represents an obligation included in their working instructions.

This study points to the necessity for district nurses to be offered resources and education in order to be able to fulfil their commitment, i.e. providing good palliative care in the home. In order to care effectively for seriously ill and dying people, district nurses themselves need support. This study has indicated that district nurses must be offered resources and education in order to be able to fulfil their commitment.

The aim of the present study was to explain and describe a complex picture of how people involved in the palliative care of cancer patients at home experience this.

Section snippets

Method and subjects

Eighteen adults involved, in different ways, in palliative care at home answered questions about how they perceived this form of care. These adults were: six cancer patients receiving palliative care in their own homes (Appelin and Berterö, 2004), six next of kin of these cancer patients (Brobäck and Berterö, 2003) and six district nurses caring for these cancer patients and their next of kin (Berterö, 2002). Criteria were set to establish the research population: (i) being an adult (ii) being

Findings

The advantage of palliative care at home was identified as striving for normal life, which was composed of four clusters: care in the home, including physical care and mental/emotional care; emotional experiences; safety and resources/policies. The disadvantages of palliative care at home were identified as being commitment, composed of two clusters, adaptation and extra work, and demands, composed of two clusters, frustration and uncertainty (Fig. 1).

Discussion

In our opinion qualitative interviews followed by a secondary hermeneutic interpretation are a good means of contributing to our understanding of the nature of human beings and how illness and certain forms of caring affect our lives. One could argue that the sample size is too small to gain valuable understanding and knowledge. However, the sample size in phenomenological research is approximately six participants (Morse, 1998) and the primary studies were phenomenological. Furthermore, in

Acknowledgements

We would like to thank all the interviewees who participated in our studies, particularly for sharing their experiences. We also want to thank Susan Barclay Öhman, Ph.D., for revising the English. The research was supported by grants from the Scientific Council in the County of Jönköping, Sweden, and the Foundation Capital of Clinical Cancer Research in Jönköping, Sweden.

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