International Journal of srD & AIDS 1992; 3: 248-250
EDITORIAL REVIEW
AIDS and palliative care S Mansfield MB ChBl, G Barter MRCGP1 and S Singh MRCGP2 lAIDS Unit, Westminster Hospital, Horseferry Road, London, SW1P 2AP and 2London Lighthouse, 111-117 Lancaster Road, London, Wll 1QT, UK Keywords: Human immunodeficiency virus, acquired immunodeficiency syndrome, terminal care, palliative care We are such stuff As dreams are made on; and our little life Is rounded with a sleep ... The Tempest IV.i.l56
The specialty of palliative care and with it the hospice movement has undoubtedly made great strides in the last 20 years. There is a long histo7 of care in the community by general practitioners . Subsequently, the pioneering work of Dame Cicely Saunders- and the input of a number of prominent charities and trusts has led to an almost exponential rise in the number of units throughout the country. This has affirmed the place of palliative care in health delivery. Since the opening of St Christopher's hospice in 1967, there are now 430 hospice services in Britain, including 159 residential units, 321 home care teams and 151 day care services". One commonly used definition of palliative care is that which is concerned with the specialized care of patients with severe and progressive disease (mainly advanced cancer); where curative treatment is no longer possible and where death is the likely outcome in the short or medium term. Palliative care organizations aim to provide to the highest possible standards a patient's medical, nursing, social and spiritual care and support for a patient's family both during the illness and into the bereavement", It can be seen therefore that HIV disease is an apposite exemplar of palliative caret. One of the great surprises in NOS care is that there is little new in the analysis of ethical and moral questions; however, AIDS and HIV have certainly highlighted and focused attention on fundamental issues such as patient autonomy and informed consent. There are two reasons for this, the first being that a young, vocal, articulate and assertive group of people have been confronted with a life-threatening disease. The second is that despite extensive research there is still an inevitable dearth of information in important areas like optimal clinical management and drug treatments.
Correspondence to Dr 5 Mansfield, Westminster Hospital, London SW1P 2AP, UK
These features make it a particularly challenging specialty since true informed consent often requires lengthy, time-consuming explanations and discussions before decisions can be made. In the context of palliative care, the decisions made by patients concerning their own care often amounts to answering three questions, how to die, where to die and when to die. HOW TO DIE The first question concerns the exact nature of the palliative treatment that individuals require to gain control over their symptoms. Involving the patient in these decisions is fundamental and crucial in AIDS as in all palliative cares. The range of symptoms experienced by patients may include pain, general debility, shortness of breath, cough, nausea, anorexia, diarrhoea, motor dysfunction and mood disturbance'r". In a series of 100 patients with advanced HIV disease it was found that there were 64 significant pain problems for 53 patients": Peripheral neuropathy Abdominal pain Headache Skin pain Oropharyngeal pain Chest pain Diffuse pain Pain unrelated to AIDS
19 12 10 9 4 3 2 5
Palliative care for those with AIDS can be seen to involve the same principal problems of symptom control and does not differ fundamentally from the palliative care of people with other conditions such as metastatic disease or degenerative neurological conditions. The quality of palliative care in any acute medical setting can be very variable. This could be improved by refocusing the clinical imperativel". The oft heard remark on a ward round, 'The next patient is for TLC', should immediately precipitate a thorough discussion of the patients' symptoms, rather than the usual hurried passage to the next patient accompanied by a feeling of failure and guilt among the staff.
Mansfield et al. AIDS and palliative care
WHERE TO DIE
In practice, this second question is one which is only relevant when there are genuine choices available. These are determined by individual preferences, individual resources and local services. Many patients express the desire to die at home. The extensive experience of community based general practitioners, family physicians or primary care teams in looking after all patients requiring palliative care, can be utilized and adapted for people with AIDSll. This can be stimulated by using hospital support teams where availablel-. Clearly someone without a stable home environment or who does not want to access local services may find that the option of dying at home is not feasible. The choice of dying in hospital is usually a fait accompli rather than an active decision. None the less, patients may feel safer in hospital surrounded by familiar people who have looked after them over the previous months. There are, however, two important difficulties for hospital carers. The first is that while looking after those with acute medical illness, there can be some difficulty in simultaneously adapting ward practices to the needs of a person who may be dying quite slowly. Secondly, the priorities of a hospital unit at the forefront of research may be in conflict with palliative care and its focus on symptom relief, because research into acute disease has values and aims which are almost in opposition to those of palliative care. The necessary balancing of these priorities can be hard to manage within the confines of the ward and can only be achieved by utilizing all members of the multidisciplinary team and promoting good all round communication to encourage patient-centred care 13 • The third environment in which a person can choose to die, if available, is a residential hospice-s. Currently, hospices are scarce and not always available to the general population. Many hospices remain unwilling to involve themselves in the terminal care of those with HIV disease for a variety of reasons. Perhaps the most important is the difficulty in assessing the acuteness of care required. For example, while a decision may have been made not to treat a person for lymphoma because of a poor prognosis, if the patient subsequently developed sight threatening CMV retinitis it might well be deemed appropriate to treat this serious but not mortal condition as a palliative measure. It is this ambiguity that can make palliative carers uneasy'". Kubler-Ross has said that'a hospice that doesn't accept AIDS patients, should not be called a hospice'. Similarly Dame Cicely Saunders has said that hospices are for any dying person regardless of disease": Despite these unequivocal statements, many hospices in the United Kingdom remain unwilling to care for those dying with HIV disease. The problems that generic hospices have in looking after people with HIV disease has led to the development of residential hospices specific to this
249
disease-". The most obvious advantages of these are that the residential care is geared to meet the particular needs of people with HIV infection and is very sensitive to all of the social and psychological issues associated with the disease. However, there can be disadvantages for a patient resident in one of these specific institutions especially if they have not been open about their diagnosis to friends and relatives. The relative merits of the specialized hospice versus the non specialized one have been discussed18,19 . WHEN TO DIE Patients often want to decide when they die. The simplest form that this may take is deciding to give up treatment. This may be either acute or prophylactic therapy. It is relatively common for a patient to decide that they do not wish to have further acute treatments if they should get further opportunistic infections, but decide to continue with prophylactic measures. Again, this can lead to apparently anomalous situations such as a patient deciding with their physician, not to have a new episode of PCP treated but continuing to have daily IV infusions to prevent blindness from CMV retinitis. At the other end of the spectrum, patients may demand' courageous measures' beyond that which is believed to be appropriate by the physician. This reiterates that the balance between quantity and quality of life is different for each individual and that these decisions are difficult and can only be reached by full discussion between the patient and his or her carers-", Decisions about stopping treatment amount to a passive view about when to die. Some patients want to choose a more active option. The current debates about euthanasia and assisted suicide22- 25 are beyond the brief of this editorial. However, health care workers need to acknowledge the complex ethical issues surrounding these areas. This is a further example of how AIDS care has given greater urgency to a longstanding debate. It is important that we do not measure success, especially in HIV disease, solely in terms of end points. The inevitable end point of human life is death. However, it is important that the journey is evaluated, and that the route chosen by patients under our care is one that we support with empathy and compassion.
Acknowledgements: We wish to thank Help the Hospices and Lindsey Riley for their assistance. References 1 Wilkes E. Cancer outside hospital. Lancet 1964;i:1379-81 2 Dying with dignity. London: Office of Health Economics, February 1991 3 1991 Directory of Hospice Services in UK and Republic of Ireland. Hospice Information Service, 1991
250
International Journal of SID & AIDS Volume 3 July/August 1992
4 Bulkin W, Lutashok H. Treatment for dying: the case for hospices. N Engl J Med 1986;318:376-8 5 The experience of AIDS. Palliative Care. 1988;4(4):8-25 6 Keen LM. A personal experience with AIDS. Am J Hospice Care 1986;March/April:l0-16 7 MacFaddon D. Symptom control in AIDS. J Palliative Care 1988;4(4):42-5 8 Scheitinger H. Hospice care needs of the person with AIDS. Palliative Care 1986;2(1):31-2 9 Schofferman J. Pain: diagnosis and management in the paliative care of AIDS. J Palliative Care 1988;4(4):46-9 10 Cassell EJ.The nature of suffering and the goals of medicine. N Engl J Med 1982;306:639-45 11 Martin JP. The AIDS home care and hospice program. Am ] Hospice Care 1986;March/April: 35-7 12 Smits A, Mansfield S, Singh S. Facilitating care of patients with HIV infection by hospital and primary care teams. 8M] 1990;300:241-3 13 Tsoukas C. AIDS: Future implication for palliative care. ] Palliative Care 1986;2(1):35-8 14 McLeod WA, Smith J, Willoughby B. Hospice care of AIDS patients. ] Palliative Care 1986;2(1):33-4 15 O'Connor JA, Burge FI, King B, Epstein J. Does care exclude cure in palliative care? ] Palliative Care 1986;2(1):9-15 16 DiTullio SA. Where can an AIDS patient turn for care? Am J Hospice Care 1986;March/April:4
17 Caring for persons with AIDS: initiatives. ] Palliative Care 1988;4(4):88-118 18 Gebert B, Sumser J, Macquire B, et al. Dedicated vs mainstreamed care: the views of people with HIV disease. VIth International Conference on AIDS, San Francisco, California, June 20-24 1990 (Poster) 19 Schofferman J. Hospice care of the patient with AIDS. The Hospice Journal 1987;3(4):51-74 20 Singh S. Colin's story: personal view. 8M] 1991;302: 242-3 21 Annas GJ. Nancy Cruzan and the right to die (Sounding Board). N Engl] Med 1990;323:670-73 22 Cassel CK, Meier DE. Editorial: morals and moralism in the debate over euthanasia and assisted suicide. N Engl] Med 1990;323:750-2 23 Kennedy L. Counterblasts No. 13 Euthanasia: TheGood Death. London: Chatto and Windus, 1990 24 Singer PA, Siegler M. Editorial: Euthanasia-a critique. N Engl] Med 1990;322:1881-3 25 Institute of Medical Ethics Working Party on the ethics of prolonging life and assisting death. Viewpoint. Lancet 1990;336:610-13
(Accepted 11 September 1991)
EDITORIAL REVIEW
AIDS and palliative care S Mansfield MB ChBl, G Barter MRCGP1 and S Singh MRCGP2 lAIDS Unit, Westminster Hospital, Horseferry Road, London, SW1P 2AP and 2London Lighthouse, 111-117 Lancaster Road, London, Wll 1QT, UK Keywords: Human immunodeficiency virus, acquired immunodeficiency syndrome, terminal care, palliative care We are such stuff As dreams are made on; and our little life Is rounded with a sleep ... The Tempest IV.i.l56
The specialty of palliative care and with it the hospice movement has undoubtedly made great strides in the last 20 years. There is a long histo7 of care in the community by general practitioners . Subsequently, the pioneering work of Dame Cicely Saunders- and the input of a number of prominent charities and trusts has led to an almost exponential rise in the number of units throughout the country. This has affirmed the place of palliative care in health delivery. Since the opening of St Christopher's hospice in 1967, there are now 430 hospice services in Britain, including 159 residential units, 321 home care teams and 151 day care services". One commonly used definition of palliative care is that which is concerned with the specialized care of patients with severe and progressive disease (mainly advanced cancer); where curative treatment is no longer possible and where death is the likely outcome in the short or medium term. Palliative care organizations aim to provide to the highest possible standards a patient's medical, nursing, social and spiritual care and support for a patient's family both during the illness and into the bereavement", It can be seen therefore that HIV disease is an apposite exemplar of palliative caret. One of the great surprises in NOS care is that there is little new in the analysis of ethical and moral questions; however, AIDS and HIV have certainly highlighted and focused attention on fundamental issues such as patient autonomy and informed consent. There are two reasons for this, the first being that a young, vocal, articulate and assertive group of people have been confronted with a life-threatening disease. The second is that despite extensive research there is still an inevitable dearth of information in important areas like optimal clinical management and drug treatments.
Correspondence to Dr 5 Mansfield, Westminster Hospital, London SW1P 2AP, UK
These features make it a particularly challenging specialty since true informed consent often requires lengthy, time-consuming explanations and discussions before decisions can be made. In the context of palliative care, the decisions made by patients concerning their own care often amounts to answering three questions, how to die, where to die and when to die. HOW TO DIE The first question concerns the exact nature of the palliative treatment that individuals require to gain control over their symptoms. Involving the patient in these decisions is fundamental and crucial in AIDS as in all palliative cares. The range of symptoms experienced by patients may include pain, general debility, shortness of breath, cough, nausea, anorexia, diarrhoea, motor dysfunction and mood disturbance'r". In a series of 100 patients with advanced HIV disease it was found that there were 64 significant pain problems for 53 patients": Peripheral neuropathy Abdominal pain Headache Skin pain Oropharyngeal pain Chest pain Diffuse pain Pain unrelated to AIDS
19 12 10 9 4 3 2 5
Palliative care for those with AIDS can be seen to involve the same principal problems of symptom control and does not differ fundamentally from the palliative care of people with other conditions such as metastatic disease or degenerative neurological conditions. The quality of palliative care in any acute medical setting can be very variable. This could be improved by refocusing the clinical imperativel". The oft heard remark on a ward round, 'The next patient is for TLC', should immediately precipitate a thorough discussion of the patients' symptoms, rather than the usual hurried passage to the next patient accompanied by a feeling of failure and guilt among the staff.
Mansfield et al. AIDS and palliative care
WHERE TO DIE
In practice, this second question is one which is only relevant when there are genuine choices available. These are determined by individual preferences, individual resources and local services. Many patients express the desire to die at home. The extensive experience of community based general practitioners, family physicians or primary care teams in looking after all patients requiring palliative care, can be utilized and adapted for people with AIDSll. This can be stimulated by using hospital support teams where availablel-. Clearly someone without a stable home environment or who does not want to access local services may find that the option of dying at home is not feasible. The choice of dying in hospital is usually a fait accompli rather than an active decision. None the less, patients may feel safer in hospital surrounded by familiar people who have looked after them over the previous months. There are, however, two important difficulties for hospital carers. The first is that while looking after those with acute medical illness, there can be some difficulty in simultaneously adapting ward practices to the needs of a person who may be dying quite slowly. Secondly, the priorities of a hospital unit at the forefront of research may be in conflict with palliative care and its focus on symptom relief, because research into acute disease has values and aims which are almost in opposition to those of palliative care. The necessary balancing of these priorities can be hard to manage within the confines of the ward and can only be achieved by utilizing all members of the multidisciplinary team and promoting good all round communication to encourage patient-centred care 13 • The third environment in which a person can choose to die, if available, is a residential hospice-s. Currently, hospices are scarce and not always available to the general population. Many hospices remain unwilling to involve themselves in the terminal care of those with HIV disease for a variety of reasons. Perhaps the most important is the difficulty in assessing the acuteness of care required. For example, while a decision may have been made not to treat a person for lymphoma because of a poor prognosis, if the patient subsequently developed sight threatening CMV retinitis it might well be deemed appropriate to treat this serious but not mortal condition as a palliative measure. It is this ambiguity that can make palliative carers uneasy'". Kubler-Ross has said that'a hospice that doesn't accept AIDS patients, should not be called a hospice'. Similarly Dame Cicely Saunders has said that hospices are for any dying person regardless of disease": Despite these unequivocal statements, many hospices in the United Kingdom remain unwilling to care for those dying with HIV disease. The problems that generic hospices have in looking after people with HIV disease has led to the development of residential hospices specific to this
249
disease-". The most obvious advantages of these are that the residential care is geared to meet the particular needs of people with HIV infection and is very sensitive to all of the social and psychological issues associated with the disease. However, there can be disadvantages for a patient resident in one of these specific institutions especially if they have not been open about their diagnosis to friends and relatives. The relative merits of the specialized hospice versus the non specialized one have been discussed18,19 . WHEN TO DIE Patients often want to decide when they die. The simplest form that this may take is deciding to give up treatment. This may be either acute or prophylactic therapy. It is relatively common for a patient to decide that they do not wish to have further acute treatments if they should get further opportunistic infections, but decide to continue with prophylactic measures. Again, this can lead to apparently anomalous situations such as a patient deciding with their physician, not to have a new episode of PCP treated but continuing to have daily IV infusions to prevent blindness from CMV retinitis. At the other end of the spectrum, patients may demand' courageous measures' beyond that which is believed to be appropriate by the physician. This reiterates that the balance between quantity and quality of life is different for each individual and that these decisions are difficult and can only be reached by full discussion between the patient and his or her carers-", Decisions about stopping treatment amount to a passive view about when to die. Some patients want to choose a more active option. The current debates about euthanasia and assisted suicide22- 25 are beyond the brief of this editorial. However, health care workers need to acknowledge the complex ethical issues surrounding these areas. This is a further example of how AIDS care has given greater urgency to a longstanding debate. It is important that we do not measure success, especially in HIV disease, solely in terms of end points. The inevitable end point of human life is death. However, it is important that the journey is evaluated, and that the route chosen by patients under our care is one that we support with empathy and compassion.
Acknowledgements: We wish to thank Help the Hospices and Lindsey Riley for their assistance. References 1 Wilkes E. Cancer outside hospital. Lancet 1964;i:1379-81 2 Dying with dignity. London: Office of Health Economics, February 1991 3 1991 Directory of Hospice Services in UK and Republic of Ireland. Hospice Information Service, 1991
250
International Journal of SID & AIDS Volume 3 July/August 1992
4 Bulkin W, Lutashok H. Treatment for dying: the case for hospices. N Engl J Med 1986;318:376-8 5 The experience of AIDS. Palliative Care. 1988;4(4):8-25 6 Keen LM. A personal experience with AIDS. Am J Hospice Care 1986;March/April:l0-16 7 MacFaddon D. Symptom control in AIDS. J Palliative Care 1988;4(4):42-5 8 Scheitinger H. Hospice care needs of the person with AIDS. Palliative Care 1986;2(1):31-2 9 Schofferman J. Pain: diagnosis and management in the paliative care of AIDS. J Palliative Care 1988;4(4):46-9 10 Cassell EJ.The nature of suffering and the goals of medicine. N Engl J Med 1982;306:639-45 11 Martin JP. The AIDS home care and hospice program. Am ] Hospice Care 1986;March/April: 35-7 12 Smits A, Mansfield S, Singh S. Facilitating care of patients with HIV infection by hospital and primary care teams. 8M] 1990;300:241-3 13 Tsoukas C. AIDS: Future implication for palliative care. ] Palliative Care 1986;2(1):35-8 14 McLeod WA, Smith J, Willoughby B. Hospice care of AIDS patients. ] Palliative Care 1986;2(1):33-4 15 O'Connor JA, Burge FI, King B, Epstein J. Does care exclude cure in palliative care? ] Palliative Care 1986;2(1):9-15 16 DiTullio SA. Where can an AIDS patient turn for care? Am J Hospice Care 1986;March/April:4
17 Caring for persons with AIDS: initiatives. ] Palliative Care 1988;4(4):88-118 18 Gebert B, Sumser J, Macquire B, et al. Dedicated vs mainstreamed care: the views of people with HIV disease. VIth International Conference on AIDS, San Francisco, California, June 20-24 1990 (Poster) 19 Schofferman J. Hospice care of the patient with AIDS. The Hospice Journal 1987;3(4):51-74 20 Singh S. Colin's story: personal view. 8M] 1991;302: 242-3 21 Annas GJ. Nancy Cruzan and the right to die (Sounding Board). N Engl] Med 1990;323:670-73 22 Cassel CK, Meier DE. Editorial: morals and moralism in the debate over euthanasia and assisted suicide. N Engl] Med 1990;323:750-2 23 Kennedy L. Counterblasts No. 13 Euthanasia: TheGood Death. London: Chatto and Windus, 1990 24 Singer PA, Siegler M. Editorial: Euthanasia-a critique. N Engl] Med 1990;322:1881-3 25 Institute of Medical Ethics Working Party on the ethics of prolonging life and assisting death. Viewpoint. Lancet 1990;336:610-13
(Accepted 11 September 1991)
