Extending specialist palliative care to all?
Introduction
Palliative care has its origin in the modern hospice movement and is concerned with the physical, psychosocial and spiritual care of patients with life-threatening disease and their families, focusing on both the quality of the remaining life of the patient and on the support of the family and those close to the patient (Saunders, 1996). Initially, it focused on the care of dying cancer patients, but has more recently extended its remit to include cancer patients at an earlier stage of the disease trajectory (Ahmedzai, 1996). Nearly one-fifth (17.5%) of cancer patients in the UK now die in a hospice or specialist palliative care unit, and a further 39% die whilst in the care of a palliative home-care team or Macmillan community nurse1 (Eve et al., 1997). The proportion of dying cancer patients who receive some care from specialist palliative care services is likely to be higher than these figures suggest as some receive care from hospital palliative care teams or attend a hospice day unit but die elsewhere. Palliative care for cancer patients has therefore extended rapidly since the inception of modern hospice care 30 years ago with the opening of St. Christopher's Hospice, London, UK.
To date, palliative care has been focused almost entirely on cancer patients: in 1995 in the UK 3.3% of new referrals to inpatient services in hospices and specialist palliative care units had a non-cancer diagnosis, as did 3.7% of new referrals to home care services (Eve et al., 1997). Since their inception, some hospices have provided care for patients with neurological conditions, particularly motor neurone disease and multiple sclerosis and more recently for patients with AIDS/HIV, initially in freestanding hospices and more recently in non-specialised units. Very few patients receiving palliative care fall outside these disease groups. However, it has been recognised since the beginning of modern hospice care that its principles may benefit patients dying from other causes (Saunders, 1978; Saunders and Baines, 1983) and the extension of palliative care beyond cancer has been advocated since at least 1980 (Wilkes, 1980). In 1992 the joint report of the Standing Medical Advisory Committee and Standing Nursing and Midwifery Advisory Committees on the principles and provision of palliative care recommended that “all patients needing them should have access to palliative care services. Although often referred to as equating with terminal cancer care, it is important to recognise that similar services are appropriate and should be developed for patients dying from other diseases” (Standing Medical Advisory Committee and Standing Nursing and Midwifery Advisory Committee, 1992). This message has been reinforced by the 1996 NHS Executive letter on palliative care (NHS Executive, 1996). In contemporary Britain palliative care has been promoted as a right for everyone who is dying.
Before attempting to assess the feasibility of this, it is first necessary to be clear about what is being suggested, as palliative care is not necessarily well understood and definitions of it vary. In the UK, the National Council for Hospices and Specialist Palliative Care Services (NHCPCS) distinguishes between the palliative care approach and specialist palliative care services (NCHSPCS, 1995). The palliative care approach “aims to promote both physical and psychosocial well being. It is a vital and integral part of all clinical practice, whatever the illness or its stage, informed by knowledge and practice of palliative care principles and supported by specialist palliative care”. In contrast specialist palliative care services are those services with “palliative care as their core specialty”. These “are needed by a significant minority of people who deaths are anticipated”. Specialist palliative care services in the UK take a variety and changing range of forms, including in-patient and day hospices, Macmillan community nurses, hospice home care teams, hospital support teams and hospice-at-home services. It is specialist palliative care services, rather than a palliative care approach, which are the focus of this paper.
In this paper the case for extending specialist palliative care to non-cancer patients is presented and critiqued. The paper will first consider the arguments to support the case for extending specialist palliative care services beyond patients with cancer. These mainly revolve around establishing that there is indeed an unmet need for specialist palliative care services among patients with chronic, non-malignant conditions. Five potential barriers to extending specialist palliative care to these patients are then reviewed: the skill base of current specialists in palliative care, difficulties in identifying candidates for specialist palliative care, the views of potential users of these services, resource implications and vested interests in present health service arrangements.
Section snippets
Arguments for extending specialist palliative care services to non-cancer patients
The case of extending specialist palliative care services to chronic conditions other than cancer can be made in terms of equity and in terms of need.
Barriers to extending specialist palliative care service to non-cancer patients
There are at least five potential barriers to achieving such an extension:
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The potential lack of skills amongst specialist palliative care experts in the care of non-cancer patients.
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The difficulties of identifying candidates for specialist palliative care services.
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The lack of information on the acceptability of these services to non-cancer patients.
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The resource implications of extending specialist palliative care services.
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Vested interests in present arrangements.
Concluding comments
There is a growing body of opinion and evidence that specialist palliative care services should be extended to non-cancer patients. Although there have been almost no evaluations of specialist palliative care provision for patients who die from causes other than cancer, there is now convincing evidence that conventional care alone is not meeting the needs of such patients. Thus, what is not in doubt is that the status quo is unacceptable (Addington-Hall, 1998). This must be recognised by the
References (53)
Special not different: General practitioners' accounts of their care of dying people
Soc. Sci. Med.
(1998)- et al.
Impact of witnessing death on hospice patients
Soc. Sci. Med.
(1996) Dying now
Lancet
(1984)- Addington-Hall, J.M., 1996. Heart disease and stroke: lessons from cancer care. In: Ford, G. (Ed.), Interfaces in...
- Addington-Hall, J.M., 1998. Reaching out: Specialist Palliative Care for Adults with Non-malignant Disease. National...
- Addington-Hall, J.M., Fakhoury, W., McCarthy, M., 1998. Specialist palliative care in non-malignant-disease. Palliat....
- et al.
Symptom control, communication with health professionals and hospital care of stroke patients in the last year of life, as reported by surviving family, friends and carers
Stroke
(1995) - et al.
Community care for stroke patients in the last year of life: results of a national retrospective survey of surviving family, friends and officials
Health Soc. Care Commun.
(1997) - et al.
Regional study of care for the dying: methods and sample characteristics
Palliat. Med.
(1995) - Ahmedzai, S., 1993. The medicalisation of dying: A doctor's view. In: Clark, D. (Ed.), The Future for Palliative Care:...
Making a success out of life's failures
Prog. Palliat. Care
Palliative care in motor neurone disease
Int. J. Palliat. Nurs.
The care of the terminally ill: morality and economics
N. Engl. J. Med.
Dialysis discontinuation. A ‘good’ death?
Arch. Intern. Med.
Palliative care nursing education: a review of research findings
J. Adv. Nurs.
Diagnosis and management of heart failure
BMJ
The economics of dying. The illusion of cost savings at the end of life
N. Engl. J. Med.
Hospice and palliative care in the UK 1994–1995, including a summary of trends 1990–1995
Palliat. Med.
Palliative medicine and the medicalisation of death
Eur. J. Cancer Care.
Education for palliative care: formal education about death, dying and bereavement in UK medical schools in 1983 and 1994
Med. Educ.
The costs of unpaid labour: the management and use of voluntary staff in the King's Mill Hospice
Health Soc. Care Commun.
Achievements and intentions: the work of the National Council for Cancer and Specialist Palliative Care Services
Eur. J. Palliat. Care.
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