District nurses' perceptions of palliative care in the ... - SAGE Journals

District nurses’ perceptions of palliative care in the home Carina Berterö, PhD

Abstract

Introduction

Palliative care describes a caring philosophy. Originally, palliative care referred exclusively to the care of dying cancer patients, but over time has expanded to include mitigating care of all dying people whatever the diagnosis. The purpose of this paper is to explore the meaning of palliative care according to the experience of district nurses in Sweden. Six district nurses were interviewed, and the transcripts were analyzed using Giorgi’s phenomenology. The essence of the caring philosophy for the nurses in the study was identified as commitment, underscored by four themes: challenge, control, frustration, and relationships. These findings indicate that district nurses must be offered resources and education in order to be able to fulfill their commitment, i.e., to supply good palliative care. Key words: palliative care, challenge, control, frustration, relationships, commitment

Over the last several decades, the structure of Sweden’s population has changed: the percentage of older people has increased. Since the risk of becoming ill with a disease increases with age, the number of ill people has also increased. Treatment, including technical and medical actions, may prolong a person’s survival.1 Cardiovascular disease is the most common cause of death in Sweden today, closely followed by cancer. Medical-technical development during the years has improved rates of cure and survival in patients with cancer, but there is a great variation in survival depending on the type of cancer and the course of the disease. Death from cancer increases as the population’s average length of life increases.2-5 Similar figures can be found in other Western countries.5 The experience of patients dying in their own homes appears to vary widely because homes and families differ in terms of social, psychological, and spiritual makeup, and also because of the nature, conduct, and availability of support given to unpaid caregivers.6 The financial position of the healthcare system has become more and more strained, and this in turn has resulted in fewer hospital beds. To compensate for these effects, the homecare system has been extended,

Carina Berterö, PhD, Assistant Professor, Department of Nursing Science, School of Health Sciences, Jönköping University, Jönköping, Sweden; Department of Medicine Care, Division of Nursing Science, Faculty of Health Science, Linköping University, Linköping, Sweden.

American Journal of Hospice & Palliative Care Volume 19, Number 6, November/December 2002

with the aim of ultimately replacing hospital care.1 In Sweden, about 25 years ago, “advanced homecare,” an alternative to hospitalized care, was created. The idea of advanced homecare was that the patients and spouses should be offered choices that were not generally available in a hospital setting, and this would bring about an enhanced quality of care.1 Advanced homecare consists of a hospital-based homecare team that provides 24-hour-a-day care for dying patients and their families at home; backup beds in the hospital are available whenever the need arises. Expert palliative care and attention to meet the different needs of the patient and family are a priority. Because of the caregivers’ close association to hospitals, resources and expertise are easily accessible although, whenever possible, advanced care is provided in the home.7 During recent years, there has been a change in where people die, from hospitals to special types of housing or patients’ homes. Fewer beds in hospitals, together with the extended homecare system, points to many more people dying in their own homes.2 Primary healthcare teams in Sweden are nowadays responsible for the greater part of the extended homecare system, providing palliative care in patients’ own homes. The team usually consists of a

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general practitioner, a district nurse, and an assistant nurse. Access to a physiotherapist, occupational therapist, social worker, clergy, or specialists in different medical areas is a prerequisite for supplying good palliative care.8 Volunteers are not common in the Swedish palliative care teams. Palliative care is an internationally well-known concept. Originally, palliative care referred exclusively to the care of dying cancer patients, but has with time expanded to include care of all dying people no matter the diagnosis.2,9 It is not a level of care but a summarizing term for the care supplied at the end of life, when cure is no longer possible.2 It should be an active form of care, supplying care for the whole dying person; his or her next of kin should be involved and receive support and assistance; and several different forms of competence should be available for the care of the severely ill person. Assistance should be available 24 hours a day. Palliative care is not connected with a specific, individual field of medicine; hence it describes a caring philosophy. “The governing idea of palliative and hospice care has been: see not just the patient, but the person in his totality and total particularity.”10 Palliative care aims to care for the whole person until his or her death. It is continuous care, not occasional or separate caring activities.2 The definition of palliative care by The World Health Organization (WHO) states, Palliative care is the active, total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms and of psychological, social, and spiritual problems is paramount. The goal of palliative care is achievement of the best possible quality of life for patients and their families. . . .Palliative care should offer a support system to help the patient live as actively

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as possible until death and a support system to help the family cope during the patient’s illness in bereavement.11 There are several cornerstones for making palliative care a reality: controlling symptoms, mitigating pain, and easing other distressing symptoms. Teamwork, a multidisciplinary team working in an interdisciplinary way, is essential for palliative care. The patient and the family are central members of the palliative care team and are included in the teamwork. Communication and relations are also of significant importance in palliative care, both in the team and with the patient and the next of kin. Giving support to the next of kin during the time of illness and also during and after death is also important.2,9

Sweden in a county consisting of three different healthcare areas (northern, southern, and eastern) with a total population of 327,266 people. The study was conducted in the eastern area. This area has a population of around 102,242 people and is divided into four healthcare municipalities, including eight healthcare centers with district nurses working with palliative care in the home. Selection, invitation, and description of participants

A qualitative research method was chosen for this study since its focus was an exploratory part of a phenomenological study to understand district nurses’ experience of palliative care in the home. Because Giorgi’s phenomenological method12 focuses on uncovering the meaning of experiences through the study of descriptions from the perspective of the participants, it was selected as a suitable method for this study.

Between February 1999 and June 2000, a sample of six district nurses working with palliative care in the home was invited, verbally and in writing via an information letter from the researcher, to participate in the study. The letter described the purpose of the study and the data collection technique. The selection criteria included willingness to participate and share experiences, and caring for a cancer patient and his or her next of kin (this criterion was related to the larger study). All the district nurses who were invited to participate accepted and gave their informed consent. Six women, ranging in age from 44 to 63 years (median 50.5 years, mean 51.8 years), participated in this study. Time in service as a district nurse ranged from seven to 24 years (mean 14.5 years), and time in service in palliative care ranged from five to 15 years (mean 10.0 years). Two of the six district nurses had undergone a course in palliative care or nursing science focusing on dying and death. All the nurses had participated in lectures about palliative care (one day), and some of them had read literature about palliative care or visited a palliative care unit.

Location

Data collection

Purpose of the study As a part of a larger study focusing on the experience of palliative care in the home from the perspective of cancer patients, their next of kin, and the district nurses involved, this paper explores the meaning of palliative care as experienced by the district nurses.

Method Design

The study took place in southern

The data were collected through


interviews. The interviews took place at the district nurses’ places of work and lasted 25 to 60 minutes. Interviews were audiotaped and later transcribed. The general interview guide approach was used.13 The guiding questions for the study, which each nurse was asked, were

read several times to glean a better sense of the whole experience of the interviewees. The Giorgi method12 was used for data analysis. The data analysis procedure as described by Giorgi comprises seven steps: 1. The researcher reads the transcription of the experience to get the sense of the whole.

• What does it mean for you to care for and about cancer patients? • Are there any difficulties when caring for cancer patients in their homes?

2. The researcher rereads the description. 3. The transition units of the experiences are identified.

• Are there any advantages when caring for cancer patients in their homes?

4. The meaning of the units are clarified and elaborated by relating them to each other and to the whole.

The interviewee or the interviewer often spontaneously raised topics related to the interview guide, and indepth questions were asked in order to get the nurses to elaborate and give examples of more general statements.

5. The researcher reflects on the constituents in the concrete language of the interviewee.

Ethical considerations Permission to carry out the study was received from the Committee on Research Ethics and from the director of primary healthcare in every healthcare municipality, four of five having this type of palliative care in the home. One healthcare municipality, which had responded positively to participation when information was given about the study and permission, withdrew its participation during the performance of the study. The reason for this was that the district nurses felt uncomfortable asking the patients and their next of kin to participate in the study. They also felt uncomfortable using the term palliative care when talking with the patients and their spouses.

Method of analysis The transcribed interviews were

6. The researcher transforms the language of the interviewee into the language and concepts of science. 7. The researcher integrates and synthesizes any insight gathered into a descriptive structure of the phenomenon being studied.

Findings Four major themes of the experience with palliative care in the home were identified in this study: challenge, control, frustration, and relationships, all of which were factors affecting commitment to the job.

Challenge The district nurses described their role as being a professional caregiver within the field of palliative care, and they found structuring their tasks


challenging. There is the challenge of managing their ordinary healthcare tasks and in caring for the elderly while providing good palliative care. Since there are no general instructions on how to handle all situations, there is also the challenge of knowing, or finding out, how to care for patients in various situations. One district nurse said, It is interesting because it is very variable. There is no schedule for them. . . . . They are very different. The relatives are different. . . . I think you learn something the whole time, something useful for another situation. Another district nurse expressed it as follows: I have to have the knowledge. I must know when to do this or that and knowing that the patient now needs this and that. It is the way you have to go, but everything cannot be presented at once; you have to wait. . . . Everything has its treatment and its form . . . and that knowledge . . . it is I.

Control The second theme described by the district nurses was control, which includes the feeling of having control over the caring situation and being in charge of the patient and the relatives. Control is necessary to be able to supervise effectively. The district nurses try to organize their caring situations so that they feel they can master the situation at different moments during the day. Being in charge of and supervising the patient and the relatives is significant in palliative work. Control can also be obtained through being accessible and obtaining continual reports and information about what is happening. The patients can get help very

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quickly. . . . They also get our mobile telephone number so they can always reach us, and we can be there within a few minutes. Control means to be in charge of and to supervise. One example of this is as follows: We take the time. . . . They are prioritized before other tasks . . . but there could be short visits sometimes . . . but then you make the next visit longer. . . . They know that we always come back. Both the patient and the relatives understand that.

Frustration The third theme, frustration, describes the district nurses’ feelings of disappointment and anxiety at not being able to give the kind of care they would like to give. The district nurses are also often frustrated because there is rarely enough time to do all they would like to do for each patient. They also felt frustration over their employers’ not understanding that palliative care requires that the district nurses work overtime. I feel that I do not have the time to give the kind of care that I would like to give. . . . I do not have the possibility of giving that kind of care. As I experience it, the biggest problem is that we do not have the personnel; in fact, we do not have any more resources. We have what we have.

Relationships The last theme is relationships, the foundation of palliative care according to the district nurses. It is important that district nurses are able to create and

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maintain a relationship with both the patient and the relatives. The district nurses claimed that palliative care makes you become very intimate with the patients and their loved ones. This relationship is built on a feeling of safety and confidence. You come to be very close to both patients and their relatives . . . and you get involved in another way. . . . It gets you both physically and mentally in some way. . . . It gives you a lot back.

Commitment for district nurses is about supplying good palliative care and organizing their work so that their time is used in a fruitful way.

Discussion

District nurses consider these relationships to be very positive; the relationships give them something in return. This “something” was sometimes described as insight, a deeper understanding of the human being and human suffering.

Commitment The essence of these four themes is commitment. Commitment indicates that the nurses know and accept that palliative care in the home includes both obligations and engagement. A commitment is a promise to perform good work. The district nurses also understand that palliative care in the home is a commitment that includes medical and technical care, but this care should also satisfy social, psychological, and spiritual needs. Thus, it follows that the care cannot be supplied purely according to routines or mechanically: We can never decide how it should be, but we can point out expedients showing what is possible. . . . Many do not understand what [the possibilities] are today. We have extra people who can sit by the bedside, and we can support the relatives in many different ways. We also have load relief, and sometimes you give support by just being

there. . . . But it is a time-consuming labor, and it demands a lot, a lot of engagement and feelings.

Palliative care is identified and described as commitment and includes four themes: challenge, control, frustration, and relationships. These themes point out that palliative care is an area where district nurses would like more time to spend with the patients and their families, which is in agreement with the findings of Seale14 and Worth.15 The district nurses expressed that they try to perceive they are in control, but that lack of time and work overload were factors affecting their commitment. This is similar to the findings of Wilkes et al.16 To complete their commitment, there was a struggle between their disparate tasks of caring for seriously ill people and caring for children and the elderly. The district nurses tried to gain control over the caring situation, and this involved a belief in being able to influence or modify the outcome. The district nurses found themselves in a “new” situation, with new demands on their ability to care for people in their own homes. These demands gave them new challenges but not more resources in the form of personnel, time, or extended technical competence. These situations demand knowledge, skills, and flexibility from the district nurses. The interviewees who participated in this study had been in service as district nurses for quite a long time (mean 14.5 years) and had a mean of 10 years’ service within the palliative care field. They had experience, giving them insight


into the caring process, and some of them also stated that they had “informal education” gained through private reading, consultation with colleagues and specialists, and visits to palliative care units. This makes many of the district nurses skilled and informed in their practice, which could explain their ability to make the best of the situation. However, the nurses stated that they lacked various resources as well as “formal education” in palliative care and continuing professional education in symptom control and technical skills. Frustration was closely connected to the themes of challenge and control since the nurses wished to perform optimally; instead, there was often a feeling of disappointment. The district nurses, who wanted so badly to do the “right” thing, did specify frustrations that affected the outcome of their care. Relationships were a key theme described by the district nurses, which is in accordance with other studies about district nurses’ perceptions of palliative care services.17,18 To exclude the patients from the team is to make them passive recipients of their care, which is in contrast to the philosophy of palliative care. The district nurses also spoke on how these relationships gave them a lot in return, e.g., insight. This is also described in another study concerning nurses working with cancer patients.19 The themes of challenge, control, frustration, and relationships describe the district nurses’ perceptions of palliative care in the home as a commitment. A commitment, represents an obligation included in the nurses’ working instructions, and they described this commitment in a very positive way. Since many more people will be cared for in special housing and in their own homes as healthcare policies progress and the population ages, the

primary healthcare system has to be developed and extended. It is important that personnel are offered a continuous progression of their competence and continuing education.20 This study points to exactly this; the district nurses must be offered resources and education to be able to fulfill their commitment to supplying good palliative care in the home. In order to care effectively for seriously ill and dying people, district nurses themselves need support.14

Acknowledgments I would like to thank the district nurses who participated in this study, particularly for sharing their experiences, and Susan Barclay Öhman, PhD, 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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