NDT Advance Access originally published online on January 11, 2008
Nephrology Dialysis Transplantation 2008 23(3):789-791; doi:10.1093/ndt/gfm874
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Palliative care in nephrology
1 Imperial College London, Hammersmith Hospital, London, UK 2 Southmead Hospital, Bristol, UK 3 St Helier Hospital, Carshalton, Surrey, UK
Edwina A Brown, Imperial College Kidney and Transplant Institute, Hammersmith Hospital, Du Cane Road, London, W12 0HS, UK. E-mail: e.a.brown{at}imperial.ac.uk
Keywords: palliative care; patient choice; quality of death
"Der Tod, das ist die kuehle Nacht, "Death is cool night
Das Leben ist der schwuele Tag" Life is sultry day"
Heine (1797–1856)
It is only 150 years since Dumas wrote ‘La Dame aux Camélias’ on which ‘La Traviata’ by Verdi is based; Marguerite's doctor cannot treat her tuberculosis, but can recognise she is dying and therefore provide appropriate support. Medicine, of course, is now completely different-–we can and do treat many conditions that were previously incurable and we are very successful at prolonging life. This has often, however, been at the expense of regarding dying as a failure and therefore not identifying and managing end of life (which will of course happen to each one of us). We run the risk of putting off death with a succession of fruitless, and often unpleasant, medical interventions, thus denying the individuals’ right to spend their last days as they would wish and to die with dignity. People's expectations have also changed. We no longer live in large families with a high infant mortality rate or see friends and family die at a young age—and as most deaths take place in hospital, dying is no longer a ‘normal’ part of family life. This inevitably affects the attitudes of both patients and healthcare professionals, especially more junior members of the team.
Haemodialysis has only been available for just over 50 years. Initially, patients selected for treatment of end-stage kidney disease (ESKD) with chronic dialysis or transplantation were young, socially active and without other comorbidity. As dialysis became more readily available, older patients with greater comorbidity have been treated, and in most western countries, the vast majority of patients referred for treatment of ESKD are offered dialysis. Dialysis treatment is often burdensome and increasingly patients, families and healthcare teams express doubts about the quality of life of individuals with multiple other health problems. More patients are choosing not to start dialysis electing to receive conservative treatment only; in addition, withdrawal from dialysis is becoming a more common cause of death in dialysis patients.
There is an increasing awareness among nephrologists that palliative care is not just end-of-life management but rather a supportive care pathway leading over time to a dignified end of life for an individual patient [1]. Palliative care teams are also increasingly caring for people with diseases other than cancer and therefore may provide support to renal patients [2]. Palliative care is now part of the curriculum for renal trainees in many countries; though in the UK renal curriculum, most trainees do not receive specific palliative care teaching. The first joint multiprofessional educational meeting for renal and palliative care healthcare professionals took place in the UK in 2004 [3] and is now an oversubscribed annual event. We have just published a handbook giving practical guidance on all aspects of end-of-life care, including communication with patients to help healthcare professionals facilitate as good a quality death as possible for the renal patient [4].
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What is renal palliative care? |
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 Top What is renal palliative... Box 1Barriers to diagnosing end...Achieving a good quality...References |
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The various components that make up renal palliative care are shown in Box 1. Realistically, core patient care is provided by the renal team with specialist palliative care advice and help as clinically needed and available. Discussion with patients about their prognosis and future needs, i.e. advance care planning, is usually initiated by the nephrology team. Formal input from palliative care teams varies but most frequently involves end-of-life management either within the renal in-patient unit or through community and hospice palliative care teams. There is limited published information about models of how renal palliative care is delivered, but a 2004 survey of renal units in the UK showed that some have non-medical personnel with specific responsibility for palliative care as part of their job; these people may provide more formal links to palliative care teams [5]. Some units have joint renal and palliative care clinics that can provide improved symptom control for patients as required and not just at the end of life.
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Box 1 |
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TopWhat is renal palliative...Box 1Barriers to diagnosing end...Achieving a good quality...References |
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Renal palliative care encompasses:
- the total active care of the patient and family includingphysical—pain and symptom managementpsychologicalspiritualcultural;
- end-of-life care
- bereavement
- support to professional and family carers
The provision of appropriate information and support from renal and palliative care teams can enable patients
- to be given choice about whether to start dialysis—or as disease burden increases to stop dialysis
- to be involved in discussion about end-of-life care and therefore be more likely to have a dignified death
- with their families to choose the place of death
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Barriers to diagnosing end of life |
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TopWhat is renal palliative...Box 1Barriers to diagnosing end...Achieving a good quality...References |
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Management of acute intercurrent illness tends to focus on the acute problem and may not consider where the current situation fits into the total disease trajectory of the patient. One of the most useful questions to ask when reviewing a patient is: ‘Would I be surprised if he/she were to die in the next 12 months?’ Clinical features of the end of life are shown in Table 1. Making this diagnosis, however, is often seen as a failure of management rather than recognition of the irreversibility of the clinical situation. Recognising end of life would allow a positive approach to enable a patient to have a good quality death. Many nephrologists also find it difficult to initiate discussions about end-of-life management, advanced care planning or dialysis withdrawal. Patients find advanced care planning valuable in that it addresses fears, helps prepare them for death, strengthens interpersonal relationships and allows them to achieve control over their life [7]. Clinicians, however, need to recognise that people are not always consistent about their wishes and change their minds depending on their current health state [8]. The attitude of a patient at any point of time is going to be affected by their cognitive skills and psychological state, particularly depression; both can fluctuate considerably at the end of life.
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Most nephrologists do not have the time for these discussions and have not been trained to have the skills to undertake them. Patients identify fear of pain, loss of dignity, abandonment and fear of the unknown as major concerns related to dying. Attitudes towards dying are also determined by the individual's and family's belief systems. The skills required to address these concerns with a patient include an honest and straightforward approach, sensitive handling of bad news, active listening to the patient, encouragement of patients and relatives to ask questions, a willingness to talk about death and dying and an attunement to patients by being prepared to be guided by them. Some physicians do acquire these skills with experience; a recent survey of American and Canadian nephrologists [9] showed that nephrologists who had been in practice longer and who were caring for larger numbers of patients were more prepared to make end-of-life decisions.
All UK medical schools have palliative care teaching, and this is often the only time that students are able to discuss death and dying; most previous teaching has been disease specific and completely omits any reference to the fact that people die from the disease being discussed, how they die and how the dying could be managed. Experience from the United States suggests that teaching to general medical trainees, often in the form of case scenarios with discussion, does not appear to be particularly effective [10]. Palliative care teaching needs to be accompanied with a change in attitude so that the patient is seen as a person, perhaps by using the A, B, C and D of dignity conserving care—attitude, behaviour, compassion and dialogue—as recently proposed by Chochinov [11]. Education also needs to emphasise the importance of understanding patient and family belief systems for determining palliative care strategies.
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Achieving a good quality death |
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TopWhat is renal palliative...Box 1Barriers to diagnosing end...Achieving a good quality...References |
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Principles of a good death include anticipating that the end of life is close, choosing where death occurs, having time to say goodbyes, spiritual and emotional support and control of pain and other symptoms [12,13]. Some patients choose full supportive care rather than dialysis, and, indeed, there is evidence that dialysis does not increase life expectancy in older patients with multiple comorbidities [14,15]. Increasing numbers of patients die following cessation of dialysis, though this is frequently not done until the patient is deemed too sick for the actual dialysis procedure. Many of these patients have an unacceptable degree of suffering in their last days of life [16]. Pain, though not necessarily a feature of the dying process, is known to be common in dialysis patients and is associated with depression and insomnia; it is poorly managed and may predispose patients to consider withdrawal of dialysis [17]. It is particularly important that pain is controlled at the end of life—clinicians, patients and families fear the use of opioids because they fear the risk of toxicity. Some opioids, however, can be used if carefully titrated and monitored; clinicians should become familiar with a limited number of drugs [4].
Patients and their families should be permitted to discuss and indicate where the individual wants to die. If this is in hospital, an appropriate environment should be provided which includes adequate privacy. The emphasis of medical and nursing care must change to relief of and anticipation of symptoms, comfort care and support for any spiritual or religious needs. Most hospices accept non-cancer patients, though resources in the UK have not increased to encompass the many who might benefit from their services. With advance care planning and liaison with the local team, the option of being transferred to a hospice, if that is the patients’ wish, may be possible despite the short time between stopping dialysis and death. Involvement of community palliative care teams some months before actual death improves symptom control and provides a support structure enabling patients to die at home.
Palliative care does not just involve the patient and therefore end with his/her death. Providing the family and carers support during the patient's last illness improves the quality of the death, and they also need support during bereavement. The benefits of this are shown in a study demonstrating low levels of distress in families 5 years after dialysis discontinuation [18].
Palliative care in nephrology involves all members of the renal multidisciplinary team. To be successfully practised, it requires time and awareness of the needs of patients and their families. It is also very rewarding and re-establishes the role of the physician in caring and supporting the patient. As stated by Peabody in 1927 [19], ‘One of the essential qualities of the clinician is interest in humanity, for the secret of the care of the patient is in caring for the patient.’
Conflict of interest statement. None declared.
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References |
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TopWhat is renal palliative...Box 1Barriers to diagnosing end...Achieving a good quality...References |
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- Holley JL. Palliative care in end-stage renal disease: focus on advance care planning, hospice referral and bereavement. Semin Dial (2005) 18:154–156.[CrossRef][ISI][Medline]
- Cohen LM, Moss A, Weisbord SD, et al. Renal palliative care. J Palliat Med (2006) 9:977–992.[CrossRef][ISI][Medline]
- Levy JB, Chamber EJ, Brown EA. Supportive care for the renal patient. Nephrol Dial Transplant (2004) 19:1357–1360.
[Free Full Text] - Brown E, Chambers EJ, Eggeling C. End of Life Care in Nephrology: From Advanced Disease to Bereavement (2007) Oxford: Oxford University Press.
- Gunda S, Thomas M, Smith S. National survey of palliative care in end-stage renal disease in the UK. Nephrol Dial Transplant (2005) 20:392–395.
[Abstract/Free Full Text] - Renal Physicians Association (RPA), American Society of Nephrology (ASN). Shared Decision-Making in the Appropriate Initiation of and Withdrawal from Dialysis (2000) Washington: DC: RPA and ASN.
- Davison SN. Facilitating advance care planning for patients with end-stage renal disease: the patient perspective. Clin J Am Soc Nephrol (2006) 1:1023–1028.
[Abstract/Free Full Text] - Fried TR, O’Leary J, Van Ness P, et al. Inconsistency over time in the preferences of older persons with advanced illness for life-sustaining treatment. J Am Geriat Soc (2007) 55:1007–1014.[CrossRef][ISI][Medline]
- Davison SN, Jhangri GS, Holley JL, et al. Nephrologists’ reported preparedness for end-of-life decision-making. Clin J Am Soc Nephrol (2006) 1:1256–1262.
[Abstract/Free Full Text] - Fischer SM, Gozansky WS, Kutner JS, et al. Palliative care education; an intervention to improve medical residents’ knowledge and attitudes. J Palliat Med (2003) 3:391–399.
- Chochinov HM. Dignity and the essence of medicine: the A, B, C, and D of dignity of conserving care. BMJ (2007) 335:184–187.
[Free Full Text] - Chambers EJ. End of life care. In: Supportive Care for the Renal Patient—Chambers EJ, Germain MJ, Brown E, eds. (2004) Oxford: Oxford University Press. 255–264.
- Debate of the Age, Health and Care Study Group. The Future of Health and Care of Older People: the Best is Yet to Come (1999) London: Age Concern.
- Smith C, DaSilva-Gane M, Chanda S, et al. Choosing not to dialyse: evaluation of planned non-dialytic management in a cohort of patients with end stage renal failure. Nephron Clin Pract (2003) 95:40–46.[CrossRef]
- Murtagh FE, Marsh JE, Donohoe P, et al. Dialysis or not? A comparative survival study of patients over 75 years with chronic kidney disease stage 5. Nephrol Dial Transplant (2007) 22:1955–1962.
[Abstract/Free Full Text] - Germain MJ, Cohen LM, Davison SN. Withholding and withdrawal from dialysis: what we know about how our patients die. Semin Dial (2007) 20:195–199.[CrossRef][ISI][Medline]
- Davison SN, Jhangri GS. The impact of chronic pain on depression, sleep and the desire to withdraw from dialysis in hemodialysis patients. J Pain Symptom Manage (2005) 30:465–473.[CrossRef][ISI][Medline]
- Phillips JM, Brennan M, Schwartz CE, et al. The long-term impact of dialysis discontinuation on families. J Palliat Med (2005) 1:79–85.
- Peabody FW. The care of the patient. JAMA (1927) 88:876–882.
Accepted in revised form: 18.11.07
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