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(1) RN, DipNEd, BSc (Hons), PhD, FRCNA, Chair in Nursing. Australian Catholic University & St Vincent's Healthcare Campus
(2) RN, BA(Hons), Nursing Research Officer, St Vincent's Healthcare Campus Nursing Research Unit
[Abstract] [Introduction] [Purpose of this Study] [Methods] [Results] [Pace and Timing] [Fear and (Mis)understanding of Palliative Care] [Accepting Palliative Care] [Information about Palliative Care] [Education] [Peer Support and Supervison] [Conclusion] [Recommendations] [References] [Bibliography]
This paper will expand on a qualitative research project undertaken at the St Vincent's Healthcare Campus. Patents and nurses were interviewed to identify issues regarding the care of newly referred patient and families to palliative care. The care of patients whose illnesses cannot be cured places many stresses on healthcare professionals (bath generalist and palliative care specialist), and imp~ on patients and families. The complexities for all concerned in the process of referral to palliative care services cannot be underestimated. However, there is evidence the referral process could be better handled by healthcare professionals, both generalist and palliative care specialist With greater understanding of the dynamics of care, the crisis of living with an incurable illness and dying can be lessened for patents. Discussion will elaborate on the following issues:
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The transition to palliative care from other health care services can be a confusing and confronting time for patients and their carers as well as the health care workers involved. Palliative care offers physical, emotional, spiritual, and social care to those people with progressive incurable illnesses - from diagnosis to death. For patients and carers, the transition to palliative care can equate with disruption to established health care services and an uncertain future. Anecdotal evidence suggests that transition can evoke great sorrow and suffering that could be lessened with greater depth of knowledge and understanding. Nurses are central to the continuity of palliative patient care, and as such, their influence on the totality of patient care is striking.
Transition must be seen to be much more than just the referral process between organisations. It can be seen as the individual's passage through one set of hopes and expectations to another (Davies, 1995) . Before we can care for patients and carers appropriately, we first need to know their understanding of their current situation and of palliative care. This research project addresses the experience of transition to palliative care services.
Much has been written about the identification of the needs of patients and carers and the delivery of appropriate palliative care services (Ecdeston, 1997; Foulkes, 1996; Webster, 198 1) . As palliative care is a health service which aims to address the symptomatology of patients and their carers, that is, treating what they say is important to them, this type of research is of central importance. However, there have been gaps in palliative care research which this project seeks to redress. Some of these gaps have occurred because of the exclusion of the views of patients and carers (May, 1993). Furthermore, published Australian and international nursing research is scarce regarding the topic of the experiences of transition of patients and carers to palliative care services.
The complexities for all concerned in the transition to palliative care services can not be underestimated. However, there is evidence that the process could be better handled by health care workers including nurses. Furthermore, research into the patients' and carers' perspective of transition can assist nurses to develop appropriate palliative care.
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The study sampled inpatients and nursing staff at the Sacred Heart Hospice and St Vincent's Hospital:
In this study, transition to palliative care will refer to the physical, emotional, spiritual and social experiences of patients and carers who are newly referred to palliative care services.
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Inpatients were the primary focus of recruitment. Patients who have had a previous admission to a palliative care service were not targeted for this study. Nurses were targeted for participation in the project on the basis that they deal directly with patients undergoing transition to palliative care services.
Overall eleven patient interviews, five individual nurse and two focus groups with nurses (consisting of twelve participants in total) were conducted. One nurse was also speaking from his experiences as a bereaved carer of a palliative care patient. The interviews were audiotape recorded and fully transcribed.
All participants were asked about the logistics of the referral process: the people involved, the decision making, how it occurs and if there were any hindrances to the process. Patients were asked who first mentioned the idea of an introduction to palliative care, what was said, what was the resulting impression left with them and how that impression measured up with their subsequent experiences.
The transcribed interviews were read, discussed and coded by the researchers into a classification system in the manner of Glaser and Strauss' Grounded Theory (Glaser & Strauss, 1967). The data was thematically coded, where themes or concepts from the interviews are grouped together to form a collective picture of responses. The data was managed with NU. DIST software (Nonnumerical Unstructured Data Indexing Searching and Theorising). NU.DIST software allows for the management, storage and manipulation of large amounts of unstructured data, and it facilitates the process of inductive reasoning.
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The aims of the study were to identify key issues regarding transition for patients and associated nursing practice issues. The analysis of the data from the study revealed the following core themes for patients and nurses regarding transition to palliative care services.
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... life is really busy here on the ward and although we have to let someone go to the Hospice ... half an hour later that person's bed is full with new issues, new situations, and circumstances and challenges - life moves on and it is very hectic.
Similarly, a Clinical Nurse Consultant (CNC), when talking about how often he will see a newly referred patient says,
... It really is all dependent on the situation, I mean bearing in mind that we are often referred when people are going home or referred the same day, that doesn't give us a lot of time to build a good rapport or a good relationship with them
As a result for patients, the time from fiat hearing of palliative care and actual transfer or consultation could be days or even hours. The referral process and the broader transition to palliative care is something that appears to happen to patients, often they are not included in the decision making.
Indeed, four nurses in discussing referral during a focus group thought that:
No, no one is ever pushed against their. . . well, we haven't had that many people who have said "I refuse to go" though ... Ah, they are talked around... yes that is what I think ... In the nicest possible way.
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From the patient's perception the introduction to palliative care was for some shocking and strongly implied the disclosure of bad prognostic news,
I thought you came here to die. I got a bit of a shock when she said I was coming here. And I said "Oh God. Am I that far gone? "
Acute care nurses commented on the pace of providing health care and the impact on patients,
It is often very quick ... from when the acute team says we are handing you over to the Hospice and then they are suddenly there at the Hospice and people don't get a lot of time here to talk to People that they know and let it sink in. They are just handed over to a different team of doctors.
A patient spoke about the lack of time for discussion; he says,
I don't necessarily doubt what he told me, it's just that I would have liked to have had the opportunity to have longer discussion and I didn't. Because sometimes they [doctors and nurses] come in and say 'I've got to go now' and you think you're half way through a sentence.
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Patients and nurses spoke of the fear patients' experience when palliative care services are initially introduced. For the patient, underlying fear is a perception that palliative care equates with imminent death. In this next quote a patient talks of his reaction when Hospice admission was suggested,
... that a hospice suggests that you are facing death in the not too distant future and I was ... led to believe this wasn't necessarily the case in my case, but nevertheless you wonder whether you can trust that information or not ... because ... not all the medical profession are dead honest about things of that nature.
For some patients such fears manifested in delayed acceptance of palliative care services. Another patient, when asked if she had heard of the term 'palliative care' prior to when it was initially suggested says,
... yes, I knew. But normally it's associated with when you are ready to die. They never use palliative care when you are normally sick So I was in shock ... I didn't want to accept coming here, because when they said - the Hospice, I knew people came here when they are ready to die. So I thought I'm not ready to die yet.
Nurses too spoke of the patients' reaction to the suggestion of palliative care. This CNC talks of patients' fear,
The patients' will most certainly feel 'OK, this is the end of the road for me, you know', not that they have said this in so many words, but it feels as though they have been dreading the moment when somebody would say 'OK we can't treat you anymore: chemotherapy, radiotherapy, whatever... we are going to involve the people from the Hospice across the road'. So you sometimes pick up that a sense of dread when you arrive in there and they may not say it in so many words, but it can be a look of dread in their eyes that you have finally arrived.
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While some patients held great fear regarding palliative care others had no idea what it meant. Fear of palliative care, in the patients who participated in this project, was short lived. Patients spoke of the caring, attention and the atmosphere of the Hospice which helped them at a time in their life when what they hoped for was changing dramatically. One patient recalled how overwhelmed and dismayed she initially felt at the suggestion of palliative care. She remembers the thoughts that came into her mind at that time questions about her life, being able to be cured and being confronted by her mortality. During the interview she spoke calmly and openly about her death and wanted to know more about dying. What she had hoped for had essentially changed. She says:
I guess, well ... I don't know when I'm going to die, or what happens next, you know ... I'd like to know what stage I'm up to and what happens ... I'll just go along with it.
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So far, the data points out the differences in timing of the referral process between patients and the health care system. Also, there is the fear that some patients experience when palliative care is first suggested. Compounding both these issues is the inevitability of palliative care. The majority of patients who participated in this project spoke about the inevitability of their need for palliative care services. Caught between an inability to manage independently and the prospect of no more active treatments, few patients were prepared or had any real choice for their transition to palliative care. In the next quote this patient was asked if his introduction to palliative care could have been improved and he says,
Ah, well. That's a bit difficult because you don't look for things until you need them do you? If you're pretty sick you're not even thinking about it.
Patients spoke of the great physical change they were experiencing when palliative care was initially being introduced. Many patients spoke of experiencing marked deterioration in their physical functioning which directly preceded their introduction to palliative care. For various reasons, for example, not being able, to walk and falling at home, patients told their stories of how they came to using palliative care. Their experience of illness over took their personal choice and decision making regarding their level of acceptance of palliative care. As this next woman says after falling at home and not being able to get up,
[The nurse said] it used to be known as the Hospice/or the dying or something, but it is not now. And I said, 7 don't care what it is called, what anything is called I've just got to get in somewhere. I can't go on like this, 1 can't go on falling over all the time.
From feelings of fear and some degree of resignation, patients often spoke of their hopes for the future within the experience of transition and deteriorating health. This woman speaks of her transition to palliative care, she recalls the personal experience of her illness,
I know what it's like in hell now because this is where I've been ... Well I've been through so much ... I wouldn't of cared if I had gone to God right there ... when they told me I had the ulcer, the tumour . . . I don't know I was in shock I think
Interviewer - Do you feel you've had enough information about what you've been going through ... ?
I think ... I think so. They more or less told me that the radiotherapy doesn't cure the cancer. It may slow it down, but that's as far as I know ... just wait and see and hope. Whatever happens, happens. You can't do anything about it. It's in the hands of God I suppose.
... Oh 1 realise I'll die of it, but it would be good to have a good day now and then. That would be nice.
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As already stated many patients and nurses spoke of the fear and misunderstanding about what palliative care actually involves. In speaking about how patient's fear can lead to reluctance to accept services, a nurse in the next excerpt says,
The mention of the word palliative can pull down the shutters of those people who turn around and face the wall - there is no more communication to be had . . . it can be a really painful thing for them to actually accept palliative care . . . Because in their mind palliative care actually means the end. But it is a shame because often palliative care can offer services and supports that can be of benefit to that patient but unless the patient accepts palliative care then you cannot do it.
Intrinsically intertwined with patients' preparedness and acceptance of palliative care is their understanding of palliative care. Central to their understanding of palliative care is having relevant information available. However, few patients had ready access to information regarding palliative care. Several patients spoke of the value of the patient information booklet, but this was given to them after their arrival at the Hospice. As this patient says,
It gave me a breakdown of what actually palliative care entailed ... It gave me a good idea of what is achieved here or tried to be achieved. The facilities are not only for the person who is under care, but also their relations friends ... all that... I thought the book was excellent ... the ward sister gave it to me when I arrived
In principle the notion of patients having access to palliative care information was held in high regard from all nurses interviewed. However, such information was generally steered by the nurses in individual cases, for example, one on one discussion regarding palliative care at the time of a patient's transfer. Also in the acute setting a popular method of demystifying palliative care, especially when patients were hesitant or fearful of palliative care, was the Hospice tour. Furthermore, various periodic Open Days and Wellness Days are promoted in the acute setting. While these periodic or individualised methods of explaining palliative care were highly regarded by patients and acute care nurses, there was evidence of an uneven promotion of palliative care. Evidence of this uneven promotion of palliative care to patients comes from several different sources. On answering a question regarding patient access to information regarding palliative care a senior nurse replies,
They can get access to it [patient information booklet] but we don't flaunt it and leave it lying around discretely by their bedside so they happen to pick it up and [say] 'palliative care - I'd like to go there'
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Furthermore in other clinical areas nursing staff were simply not aware of the existence of patient information resources. While all agreed that palliative care had services to offer patients at all stages of an incurable illness trajectory, there remained significant hesitation to promote palliative care generally to patients other than in hushed tones to those patients in which nothing more could be done. Indeed patients spoke of sensing hesitation during the palliative care introduction, as this next patient explains,
... they gave me the impression that they may have had something to hide, that they weren't coming out in the open. One of which was - was it going to be my last trip on this earth across the road?
On balance it must be stated that the value of the Palliative Care Clinical Nurse Consultant in the acute setting was unanimously praised and stated as essential by patients and nurses during interviews. The consultant in the acute environment was central to delivering continuity of care to patients across the St Vincent's Health Care Campus. This role does much to lessen the turmoil for patients during transition to palliative care. Nurses spoke of their role to explain, communicate and provide information to patients and their families. Also nurses clearly and unanimously spoke of the need for respect of patient choice in regards to discussing death and dying. Acute care nurses were all extremely supportive of and advocates for palliative care. While palliative care consultative, community and inpatient services are available to patients from diagnosis to death, acute care nurses spoke about palliative care almost exclusively as terminal care.
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Many processes are in place to assist, support and educate acute care nurses in caring for patients. These include the peer support system a code of conduct written by nurses on a particular ward, ACCESS and multidisciplinary meetings regarding pertinent psychosocial issues. However, all acute care nurses spoke of the need for education and support on issues surrounding truth disclosure and emotional support for the patients in their care. Mindful of the pressure on their work time, nurses stated they found it difficult to attend education sessions not nursing specific or geared towards shift workers.
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Palliative care nurses, who are often working alone, spoke of the inadequacies of informal supports and the need for greater formal supervision in the workplace. As this nurse says in the next quote,
Symptom control you can get from a textbook. It's the communication, emotional and spiritual focus that no one can teach you. You know that comes from experience. . . But it is through supervision that you recognise, you're constantly thinking of how you're interacting in situations
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Lack of forewarning about palliative care referral clearly leads to shock and distress for patients. Patients said they needed time to contemplate what was happening to them and an opportunity for discussion. Compounding the lack of patient participation in planning their care was a lack of knowledge regarding what palliative care involves. This leads to possible false conclusions about their impending demise. Approximately fifty percent of patients admitted to the Hospice leave alive to either home or another institution. The political and economic forces that impinge on the pace of contemporary healthcare are unlikely to change. However, an awareness of the patient's position can lead to more appropriate care.
Possibly contributing to the lack of knowledge about palliative care was limited access to information for patients and their carers. While this is available in the form of videos and information booklets, it is not freely available in the acute care setting and key staff were unaware of its availability. Moreover, further investigation is needed into the healthcare workers' understanding of palliative care.
Patients also spoke of the inevitability of their transfer to palliative care. This may not be the case for community referrals. One of the limitations of this study was the exclusive inpatient sample. Often physically deteriorating, or in an acute episode of their illness and in fear, patients spoke of the inescapable position they found themselves in.
Nurses, both in the acute setting and in palliative care spoke of their role to guide patients through this transitional period of their life. What they asked for was more accessible and useable support and education.
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