Family Practice Vol. 16, No. 6, 573-579
© Oxford University Press 1999
Is care of the dying improving? The contribution of specialist and non-specialist to palliative care
Department of Primary Care,Whelan Building (2nd floor), Quadrangle, Brownlow Hill, Liverpool L69 3GB, UK.
Fordham S and Dowrick C. Is care of the dying improving? The contribution of specialist and non-specialist to palliative care. Family Practice 1999; 16: 573–579.
Received 17 December 1998; Revised 22 June 1999; Accepted 22 June 1999.
 |
Abstract |
|---|
 Top Abstract IntroductionLarge, population-based surveysCare of the dying...The hospice movement and...Nursing homesGeneral practiceDeath from specific conditionsConclusionsReferences |
|---|
Objectives. To identify and synthesize evidence from studies examining the quality of care of dying patients in both specialist and general practitioner care.
Method. Review of published research identified by online and manual searches.
Results. Three large, population-based surveys were identified, carried out between 1969 and 1990, and five randomized controlled trials of specialist palliative care programmes. There were, in addition, a small number of comparative studies and a large volume of descriptive, qualitative material. Some studies identified major methodological problems and the overall quality was poor. Most research concerned selected patients with neoplasms, particularly in settings where specialist palliative care teams are available. There was minimal information about the care of patients dying from non-neoplastic conditions.
Conclusions. There is limited evidence of improvements in the care of selected cancer patients, and a dearth of evidence concerning patients dying from other, more common causes. The methods of research used to date are of limited current utility and new methods are required.
Keywords. Care of the dying, general practice, palliative care, terminal illness..
|
Introduction |
|---|
|
TopAbstractIntroductionLarge, population-based surveysCare of the dying...The hospice movement and...Nursing homesGeneral practiceDeath from specific conditionsConclusionsReferences |
|---|
Care of the dying takes place in a variety of settings, with contributions by a range of professional and lay carers.1 For some, it has become a specialist field. Attitudes to terminal illness and its management are reported to be changing. Specialist facilities have emerged and expanded outside existing planning mechanisms, with little discussion of how this came about and whether it is an appropriate response to the needs of the dying. Here we examine developments in the care of the dying during the past 30 years for evidence of general improvement.
For this review, the online databases MEDLINE, EMBASE and SOCIOFILE were searched to the end of 1998 using the following keywords: palliative care, dying, chronic disease, hospice, terminal care, nursing homes. A manual search was made of the following journals: British Journal of General Practice (from 1988), British Medical Journal (from 1988), Family Practice, Journal of Palliative Care and Palliative Medicine. Bibliographies of publications cited were also searched. Although including a few randomized controlled trials, most of the studies identified were mainly descriptive and qualitative. These are not readily sorted into hierarchies of evidence, but more suited to the alternative approach of synthesis of the message of each study used.2
|
Large, population-based surveys |
|---|
|
TopAbstractIntroductionLarge, population-based surveysCare of the dying...The hospice movement and...Nursing homesGeneral practiceDeath from specific conditionsConclusionsReferences |
|---|
Three large-scale surveys of needs and care in the period prior to death have been identified. The first, by Cartwright et al., was based on a nationally representative sample of 960 deaths in 1969. Information was from detailed interviews of the closest identifiable lay carer and an 82% response rate was achieved. The findings were published in a single volume in 1973.3 Hospices did not feature. For many years this was the only such study to have been reported, and is still regarded by many as the definitive model to be used in new work. Cartwright and Seale carried out a similar study in 1987, using a sample of 800 deaths and achieving an 80% response, including 5.5% of deaths described taking place in hospices. A third major study, known as the Regional Study of Care for the Dying, used similar methods for a larger sample of 5375 deaths in 1990, 270 from each of 20 self-selected districts, and achieved a response rate of 69%. The most recent study was designed with a bias towards death from cancer. An arbitrary 60% of the sample for each district was selected from those who died of cancers; as this was not available in every district, a larger proportion of deaths from non-neoplastic causes was used for some. The method of selection is not fully described in reports of this study,4 which may have other selection bias. The bias towards cancer was intended to give greater prominence to the hospice movement, thought to have been under-represented in previous work, yet the 1987 study included a larger proportion of deaths in hospices than the national norm.
Reports based on data from the later two studies appeared in a variety of publications during an overlapping period of several years, and generally refer to deaths from specific causes or in specific settings. They are discussed in the appropriate following section.
|
Care of the dying in hospital |
|---|
|
TopAbstractIntroductionLarge, population-based surveysCare of the dying...The hospice movement and...Nursing homesGeneral practiceDeath from specific conditionsConclusionsReferences |
|---|
The proportion of deaths taking place in hospitals rose to over half of the total by the late 1970s, and has remained static since then. Most people dying at home also spend some time in hospital during their final year, and terminal diagnoses, particularly of neoplasms, are usually made and first given in hospital.
Early studies of the experience of dying in hospitals showed many shortcomings. Patients were admitted under the care of a variety of specialists who saw their main functions as diagnosis and attempts at cure. In the 1969 study, admissions were found to be prompted more by crises and breakdowns in home support mechanisms, rather than specifically ‘medical’ events.5 The overall extent to which this remains true is not clear, though these are now more likely to be accepted as valid reasons. Many patients were in pain, with other symptoms such as nausea and vomiting poorly controlled, and patients inhibited from reporting their symptoms. A number of observational studies in the 1960s and 1970s showed that hospital staff were shown to avoid patients known to be dying,6 further inhibiting symptom control and leading to isolation and alienation of patients and their carers. A later non-participant observer study of 50 patients dying in hospital in 1983, not reported until 1994, showed similar failure of symptom control and basic care, and confirmed that doctors and nurses continued to avoid patients as death approached.7 Similar reports continue.8
Barriers to more effective care included inadequate training and support of staff, whose responses were attributed to a need to protect themselves.9 Hospital doctors too were less than happy about their care of dying patients. A 1982 survey of house officers in Glasgow teaching hospitals showed that care of the dying was often left to the most junior doctors, who had had minimal experience or training in care of the dying.10 This unexpected role was a source of much stress, something to be avoided as far as possible.
Some centres have used palliative care support teams to encourage enlightened attitudes to spread, together with the more widespread use of specific methods of symptom control, and the provision of support for doctors by others with specific training. Such teams are considered part of the hospice movement and are discussed in the following sections. They usually limit their scope to patients with cancer, and those that do not have set arbitrary limits to the proportion of patients with other chronic disease.11 Concentrating on cancer patients is probably an effect of the leadership of most of these teams being in the hands of specialists, but may be difficult to justify.
Reports of improvements in terminal care in hospitals are welcome, but largely confined to small numbers of patients with cancer in centres that have a specialist team in place. Hospitals remain the commonest setting in which people die, and evidence of general improvement in care has yet to emerge. Any such evidence will depend upon new research carried out in multiple centres, not selected for the presence or absence of specialist services.
|
The hospice movement and palliative medicine |
|---|
|
TopAbstractIntroductionLarge, population-based surveysCare of the dying...The hospice movement and...Nursing homesGeneral practiceDeath from specific conditionsConclusionsReferences |
|---|
Palliative medicine is a new speciality, recognized as such in the UK only since 1987.12 The field has been led from the UK,13 and is not yet a formally certifiable speciality in many other industrialized countries.14 The formal definition includes ". . . management of patients with active, progressive, far advanced disease for whom the prognosis is limited and the focus of care is the quality of life".15
Palliative medicine is a child of the wider hospice movement, which arose in the 1960s, and expanded enormously in the following decades,16 working largely outside the NHS and funded by voluntary donations. In-patient hospice beds burgeoned to reach 2218 in 1997,17 used in conjunction with out-patient departments, specialist palliative care nurses and palliative care facilitators offering advice and support to other clinicians. Specialist palliative care facilities are generally limited to patients with cancer, and thus to a minority of dying patients.
The use of specialist palliative care services is an aspect of care of the dying that has been subject to randomized controlled trials. A trial of hospice care for cancer patients in the USA showed no improvement in symptom control, hospital stays or health care utilization, though there was increased satisfaction of patients and carers.18 A trial of a hospital-based home care programme in the USA was not restricted to cancer patients; this used a smaller sample and while it reported shorter hospital stays and an overall cost saving, symptom control was not reported.19 A further American trial of a home-care team, although also not limited to cancer patients, was limited to couples with positive motivation to participate, and the improved outcomes shown must be treated with caution.20 A UK study of the use of community-based nurse co-ordinators showed minimal differences between the control and intervention groups.21 The last study is the only one identified that is reported as having achieved its sample size; other trials either included no sample size calculation or failed to reach the required sample. One such, carried out in Canada, led its authors to conclude that randomized controlled trials were unlikely to be practicable in this field, and that while other methods were available, most would have substantial flaws.22
Studies comparing hospice or specialist palliative care to hospital or GP give a less than conclusive picture. Data from interviews of surviving spouses of 227 deaths in 1977–1979 showed little difference in symptom control between hospital and hospice patients, with those dying at home faring less well. A comparison with similar data collected a decade earlier showed that an earlier advantage of hospice care had since disappeared.23 Other more recent studies have, however, appeared to show advantage of hospice care in symptom control compared with hospital care.24 Comparisons with care at home have concentrated on the use of facilitators, usually GPs or nurses attached to a specialist unit. An early example of such a scheme in Edinburgh enabled improved symptom control, associated with increased nurse visiting and use of services, with an increase in those remaining at home until death. A more recent multi-centre scheme was weakened in its evaluation based on reports by the facilitators themselves.
Virtually all hospice patients had neoplastic disease, with many governing bodies formally restricting their use to cancer patients, though the majority of people will die not of neoplasms but of the effects of other chronic degenerative diseases.25 Although most units now admit patients with selected alternative diagnoses,26,27 cancer remains effectively an entry qualification, affecting 96% of hospice patients.17 Optimistic reports were later tempered by warnings of the need for caution in their interpretation. Hospice facilities were seldom comparable to the hospitals they were compared with, with more staff, including large numbers of unpaid volunteers, and newer, purpose-designed accommodation. The populations they served were clearly selected in ways not applied to patients in hospital or GP care. A 1989 review of evaluations concluded that the evidence for advantages of hospice care was weak.28
Hospices have also been accused of providing a high-cost, lavish service for a selected, favoured minority of patients.29 As the proportion of deaths due to tumours decreases with advancing age after 75,30 concentrating on cancer effectively discriminates against older patients.31 Older patients with late-stage chronic disease have been shown to have similar symptoms to patients with cancer, but their disability tends to be greater and their suffering to continue for longer,32 causing arguably greater distress.
Within the narrow field of cancer, it is still difficult to see how specialist palliative care or its equivalent could be made available to all within a service with finite resources. In 1995, 17.5% of patients dying of cancer ended their lives in a hospice bed.33 There is also unequal geographical distribution of hospice facilities, with a four-fold variation between regions,34 and evidence35 that their users are significantly younger, more likely to be married and less often from the ethnic minorities than patients dying in other settings. By concentrating their attentions on younger, married cancer patients, hospices appear to favour those who die after a short period of illness,36 with predictable, relatively easily controlled symptoms, and intact home care mechanisms. With an epicentre in the south of England, palliative medicine has been caricatured as a service for the richer regions of the rich countries only.37
Doubts are emerging too about whether the care provided by hospices and palliative care units is really as distinctive as described by their exponents. Claims that hospice is a process, applicable to all stages of a chronic illness from diagnosis to death,38 rather than a building have not been substantiated by observation of their practitioners. Observational studies have also revealed not only that many of the methods claimed as distinctive features of hospice care are in use on hospital wards,39 but also that problems encountered in hospitals, such as isolation and poor symptom control, with staff avoiding contact with patients in extremis, also happen in hospices.40,41 Some of the expertise claimed, for example breaking the bad news of a terminal prognosis, can perforce only seldom be used by specialists who receive referrals from other clinicians after the diagnosis and prognosis are determined. This was borne out in the 1987 study of deaths.42 A 1989 review of research of hospice activity concluded that differences between hospital and hospice care were minor, and hospices, "preserve a distinctive approach by virtue of excluding patients who do not conform to expectations".43
|
Nursing homes |
|---|
|
TopAbstractIntroductionLarge, population-based surveysCare of the dying...The hospice movement and...Nursing homesGeneral practiceDeath from specific conditionsConclusionsReferences |
|---|
Hospice care touches the dying days of a minority of the minority who die of cancer. A similar proportion of people dying of non-malignant chronic disease end their days in nursing or residential homes.27 Nursing and residential homes have also grown in number and scope over the same period as the hospice movement. Like the hospices, they have burgeoned outside the planning mechanisms of the NHS,44 and have been financed by a mixture of private and indirectly acquired public money. Unlike the hospices, they do not have access to large amounts of public donations, and are likely to be run for profit. Their staff are fewer and less likely to have had appropriate training. Much of the direct care of residents is by untrained care assistants.
Nursing home residents are larger in number than hospice patients, older and more likely to be unmarried or widowed.45 They also spend much longer periods of time in institutional care. Cancer accounts for an ever smaller proportion of deaths as age increases. The disability resulting from chronic illness also increases with age. Pain in chronic disease is as common as in cancer, and though reported as less severe it continues for longer and may be more distressing.31 There is very little information about what happens in nursing homes—there were only six references identified by the SOCIOFILE search —but what exists is not encouraging. If some early, shocking accounts of abuse now seem dated,46 there is no doubt that abuse of residents continues.47,48 Institutional barriers to effective care were the subject of a report by nurses' governing body in 1994.49 Even the best-run homes present an enormous challenge to attempts to monitor standards of care, as shown by two recent reports of pilot schemes.50,51 As no large body of information has yet emerged, it would be unsafe to assume any large-scale improvement in standards of nursing home care.
|
General practice |
|---|
|
TopAbstractIntroductionLarge, population-based surveysCare of the dying...The hospice movement and...Nursing homesGeneral practiceDeath from specific conditionsConclusionsReferences |
|---|
General practice is the one field of medicine of which virtually all of the population will have experience. Those who die in their own homes do so under the care of their GP. GPs also bear the main clinical responsibility for nursing home residents. Regardless of the final place and cause of death, all but a tiny minority will receive most of their final year's medical care from their GP.52 With some GPs having access to in-patient beds, this includes a proportion of those in hospital for the whole of their last year, as well as those ‘sudden’ deaths that are due to a known underlying cause.
Palliative care has always been part of the work of a GP. With the population of the industrial countries continuing to age, and chronic disease forming an ever larger part of GPs' workload, this can only continue. Many of the training requirements for GPs match those for specialists in palliative medicine.53 Observation reveals a large area of overlap in their respective activities that is not seen with other fields.54 Many specialists in palliative medicine are former GPs, some retaining part of that role in their new careers.55 The philosophy of palliative medicine is instantly recognizable to GPs, as is its multi-disciplinary teamwork, the importance of communication skills and the need to understand different facets of the effects of multiple symptoms. A key difference is their long-term contact with patients, and the intimate personal knowledge that brings, considered necessary for vulnerable patients to exercise autonomy in more than the negative sense of refusing treatment.56 GPs' involvement with other members of the family besides the dying patient, and with the wider community, can be an advantage in delivering effective palliative care tailored to individual patients' needs.
Studies of GP care of dying patients have shown wide variations in standards, with comments from surviving carers interviewed in 1969 ranging from extravagant praise to condemnation.57 This was repeated in the 1987 survey,58 though in comparison with the earlier study there was evidence of improvement.59 There have in general been clear deficiencies: pain control is frequently worse at home than in hospital or hospice care,60 as is control of other symptoms.61 Bereavement care has been the subject of criticism.62 Accessibility of the doctor and continuity of care differ widely, as do visiting and the effectiveness of co-ordinating the personnel involved.
Palliative and terminal care are among the most popular subjects for continuing medical education in general practice,63 including a demand for more discussion of palliative care needs for those with non-malignant chronic disease. Surveys of GPs indicate that they remain committed to their own involvement in this activity64 and do not in general share the assumption of specialists that palliative care is principally for cancer patients.65,66 Surveys of doctors' experience have shown that general practice training, not specialist teaching, is the main palliative care teaching resource not only for most family doctors,67 but also for doctors in other fields.68 With increased audit activity in general practice,69 there is hope of improvements in terminal care in general practice, but evidence so far is limited to reports from individual practices.70
|
Death from specific conditions |
|---|
|
TopAbstractIntroductionLarge, population-based surveysCare of the dying...The hospice movement and...Nursing homesGeneral practiceDeath from specific conditionsConclusionsReferences |
|---|
The bulk of available evidence about care of the dying concerns patients with cancers. The survey of deaths in 1969 paid scant attention to the cause of death. The 1991 survey has revealed that the needs of many patients with non-malignant chronic disease are similar to those of patients with cancer. Patients with stroke,71 dementia72 and heart failure73 all endure pain, restriction of physical activity, dyspnoea, incontinence, depression, anxiety and mental confusion. Symptom control is generally poor. Large proportions of those with stroke and dementia end their days in nursing homes. Historical comparisons are not yet available to indicate any trends. Carers find the support they receive inadequate, and caring for depressed, anxious or confused relatives is particularly difficult.
|
Conclusions |
|---|
|
TopAbstractIntroductionLarge, population-based surveysCare of the dying...The hospice movement and...Nursing homesGeneral practiceDeath from specific conditionsConclusionsReferences |
|---|
The question, "is care of the dying improving?" can so far not be answered decisively; the best conclusion is, "probably not on any large scale". There is some evidence of improvements in the care of a minority of dying patients, in which specialists have played a leading role. The specialist contribution may however be exaggerated.74 The concentration of reports from hospitals on the effects of specialist palliative care facilitators fails to reveal information about the majority, and contributes to obfuscation of the macroscopic picture. The specialist model excludes the majority,75 and has resulted in diverting resources away from other fields.76 The effect on care of the dying is uncertain.77
In primary care, there is limited evidence of improvements in care. The comments about reports on the effectiveness of outreach teams and facilitators in hospitals also apply to primary care. Here though the available evidence suggests that GPs' expertise has been developed and disseminated largely independently of specialists. As a large proportion of palliative physicians are either former GPs or have completed training for general practice, it can be argued that palliative medicine has drawn greater benefit from expertise acquired in general practice.78
For there to be a general improvement in the care of the dying, there must be consistent changes in the practices of a variety of clinicians who are not specialists in palliative medicine.79
Research to examine general trends in the care of the dying is limited. It should be free of the biases built into the use of selected hospital or hospice populations.80 Needs assessment and other research by specialists in palliative care has been criticized for seeking to consolidate the position of the specialist.81,82 Research by non-specialists might help to provide a more balanced picture.
A particular problem in such work is the reliance on reports by surviving lay carers. Though researchers have always urged caution in accepting lay carers as proxies for the dead, there is evidence that the popularity of specialist palliative care has led to respondents basing their reports on this model.83 Studies that use dying patients' own experience are required.
|
Acknowledgments |
|---|
The authors are grateful to Carl May, Senior Research Fellow in the Department of General Practice of the University of Manchester, for his contribution to the discussion that gave rise to the ideas in this paper. Simon Fordham is supported by a research fellowship awarded by NHSE(NW).
|
References |
|---|
|
TopAbstractIntroductionLarge, population-based surveysCare of the dying...The hospice movement and...Nursing homesGeneral practiceDeath from specific conditionsConclusionsReferences |
|---|
1 Field D, James N. Where and how people die. In Clark D (ed.). The Future for Palliative care. Issues of policy and practice. Buckingham: Open University Press, 1993: 6–29.
2
Edwards AGK, Russell IT, Stott NCH. Signal versus noise in the evidence base for medicine: an alternative to hierarchies of evidence? Fam Pract 1998; 15: 319–322.
3 Cartwright A, Hockey JL, Anderson JL. Life before Death. London: Routledge & Kegan Paul, 1973.
4
Addington-Hall J, McCarthy M. Regional study of care for the dying: methods and sample characteristics. Palliat Med 1995; 9: 27–35.
5 Cartwright A, Hockey L, Anderson JL. Hospital and institutional care. Life before Death. London: Routledge & Kegan Paul, 1973: 63–81.
6 Lasagna L. Physicians' behaviour toward the dying patient. In Brim OG, Freeman HE, Levine S, Scotch NA (eds). The Dying Patient. New York: Russell Sage, 1970: 83–101.
7
Mills M, Davies HTO, Macrae WA. Care of dying patients in hospital. Br Med J 1994; 309: 583–586.
8 Hoyland, J. Thanks, NHS, for a rotten way to die. Independent, 8 September, 1997.
9 Maguire P. Barriers to psychological care of the dying. Br Med J 1985; 291: 1711–1713.
10 Ahmedzai S. Dying in hospital: the residents' viewpoint. Br Med J 1982; 285: 712–714.
11
Severs MP, Williams PS. A hospital palliative care ward for elderly people. Age Ageing 1991; 20: 361–364.
12 Hillier R. Palliative medicine: A new speciality. Br Med J 1988; 297: 874–875.
13 Doyle D. Palliative medicine: a UK speciality. J Palliat Care 1994; 10: 8–9.
14 Mount BM, Scott JF, Bruera E, Cummings I, Dudgeon D, MacDonald N. Palliative care—a passing fad? Understanding and responding to the signs of the times. J Palliat Care 1994; 10: 5–7.
15 Doyle D, Hanks GWC, MacDonald N. Introduction. In Doyle D, Hanks GWC, MacDonald N (eds). Oxford Textbook of Palliative Medicine. Oxford: Oxford University Press, 1993: 3–8.
16 Marie Curie Memorial Foundation. Forty Years of Caring, an Anniversary Publication. London: Marie Curie Memorial Foundation, 1988.
17 The Statistical Office. Sick and disabled people. Social Trends 1998; 28: 145–146.
18 Kane R, Wales J, Bernstein L, Leibowitz A, Kaplan S. A randomised controlled trial of hospice care. Lancet 1984; 1: 890–894.[Web of Science][Medline]
19 Hughes SL, Cummings J, Weaver F. Randomised trial of the cost-effectiveness of VA hospital based home care for the terminally ill. Health Serv Res 1992; 26: 801–817.[Web of Science][Medline]
20
Zimmer JG, Groth-Junker A, McCusker J. A randomized controlled study of a home health care team. Am J Pub Health 1985; 75: 134–141.
21 Addington-Hall J, MacDonald LD, Anderson HR et al. Randomised controlled trial of effects of coordinating care for terminally ill cancer patients. Br Med J 1992; 305: 1317–1322.
22
McWhinney IR, Bass MJ, Donner A. Evaluation of a palliative care service: problems and pitfalls. Br Med J 1994; 309: 1340–1342.
23 Parkes CM. Terminal care: home, hospital or hospice? Lancet 1985; 1: 155–157.[Web of Science][Medline]
24
Lunt B, Neale C. A comparison of hospice and hospital: care goals set by staff. Palliat Med 1987; 1: 136–148.
25 Lynn J. Caring for those who die in old age. In Spiro HM, Curnen MGM, Wandel LP (eds). Facing Death. New Haven: Yale University Press, 1996: 90–102.
26 Hicks F, Corcoran GD. Should hospices offer respite admissions to patients with motor neurone disease? Palliat Med 1993; 7: 145–150.[Medline]
27 Higginson I. Prevalence and incidence. Health Care Needs Assessment: Palliative and Terminal Care. Oxford: Radcliffe Medical Press, 1997: 9–28.
28 Higginson I, McCarthy M. Evaluation of palliative care; steps to quality assurance? Palliat Med 1989; 3: 267–274.
29
Douglas C. For all the saints. Br Med J 1992; 304: 579.
30 The Statistical Office. Causes of death. Social Trends 1998; 28: 135–136.
31 Cartwright A. Death in England and Wales. Rev Clin Gerontology 1997; 7: 265–272.
32 Seale C. Death from cancer and death from other causes: the relevance of the hospice approach. Palliat Med 1991; 5: 12–19.
33
Eve A, Smith AM, Tebbit P. Hospice and palliative care in UK 1994–5 including a summary of trends 1990–95. Palliat Med 1997; 11: 31–43.
34 Lunt B, Hillier R. Terminal care: present services and future priorities. Br Med J 1981; 282: 595–598.
35
Gray JD, Forster DP. Factors associated with utilization of specialist palliative care services: a population based study. J Pub Health Med 1997; 19: 464–469.
36 World Health Organisation. Cancer Pain Relief and Palliative Care. Geneva: WHO, 1990.
37 Olweny CL. Ethics of palliative care medicine: palliative care for the rich nations only! J Palliat Care 1994; 10: 17–22.[Medline]
38 National Council for Hospice and Specialist Palliative care Services. Dilemmas and Directions, the Future of Palliative Care. London: National Council for Hospice and Specialist Palliative Care Services, 1997.
39
Seale C, Kelly M. A comparison of hospice and hospital care for those who die: views of the surviving spouse. Palliat Med 1997; 11: 93–100.
40
Johnston G, Abraham C. The WHO objectives for palliative care: to what extent are we achieving them? Palliat Med 1995; 9: 123–137.
41
Seale C, Kelly MH. A comparison of hospice and hospital care for spouses of those who die. Palliat Med 1997; 11: 101–106.
42 Seale C. Communication and awareness about death: A study of a random sample of dying people. Soc Sci Med 1991; 32: 943–952.
43 Seale C. What happens in hospices: a review of research evidence. Soc Sci Med 1989; 28: 551–559.
44 House of Commons Health Committee. Long-term Care: Future Provision and Funding. London: HMSO, 1996.
45 Cartwright A, Hockey L, Anderson JL. The experiences of some people with particular needs. Life before Death. London: Routledge & Kegan Paul, 1973: 35–62.
46 Robb B. Sans Everything—a Case to Answer. London: Thomas Nelson, 1967.
47 Alzheimer's Disease Society. Experience of Care in Residential and Nursing Homes. London: Alzheimer's Disease Society, 1997.
48 Castledine G. Elder abuse by nurses is on the increase. Br J Nurs 1994; 3: 675–676.[Medline]
49 United Kingdom Central Council for Nursing MaHV. Professional Conduct—Occasional Report on Standards of Nursing in Nursing Homes. London: United Kingdom Central Council for Nursing, Midwifery and Health Visiting, 1994.
50
Challiner Y. Introducing quality assurance into long term care for elderly people: a difficult and worthwhile process? Quality Health Care 1997; 6: 153–159.
51
Chambers R, Knight F, Campbell I. A pilot study of the introduction of audit into nursing homes. Age Ageing 1996; 25: 465–469.
52
Charlton R. Palliative care in general practice. Palliative care is integral to practice [letter; comment]. Br Med J 1995; 311: 1503.
53 Daley AG, Lennard RF. Training for palliative medicine. 1. A survey of professional opinion. Palliat Med 1991; 5: 295–302.
54 Daley AG, Lennard RF. Training for palliative medicine. 2: How should palliative physicians be trained? An observational study of the clinical skills needed by senior palliative physicians. Palliat Med 1991; 5: 303–306.
55 Chishom J. What is GMSC line on limited lists for palliative care consultants? BMA News Rev 1998; 22.
56 Carson RA. Beyond respect to recognition and due regard. In Toombs SK, Barnard D, Carson RA (eds). Chronic Illness from Experience to Policy. Bloomington: Indiana University Press, 1995: 105–128.
57 Cartwright A, Hockey L, Anderson JL. The general practitioner. In Life before Death. London: Routledge & Kegan Paul, 1973: 82–103.
58 Cartwright A. The Role of the General Practitioner in Caring for People in the Last Year of their Lives. London: King's Fund, 1990.
59
Cartwright A. Changes in life and care in the year before death. J Pub Health Med 1991; 13: 81–87.
60 Parkes CM. Home or hospital? Terminal care as seen by surviving spouses. J R Coll Gen Pract 1978; 28: 19–30.[Medline]
61 Seamark DA, Lawrence C, Gilbert J. Characteristics of referrals to an in patient hospice and a survey of general practitioner perceptions of palliative care. J R Soc Med 1996; 89: 79–84.[Abstract]
62 Cartwright A, Hockey L, Anderson JL. Death and bereavement. In Life before Death. London: Routledge & Kegan Paul, 1973: 186–205.
63 Haines A, Booroff A. Terminal care at home: perspective from general practice. Br Med J 1986; 292: 1051–1053.
64 Boyd KJ. Palliative care in the community: Views of general practitioners and district nurses of East London. J Palliat Care 1993; 9: 33–40.
65
Wilson IM, Bunting JS, Curnow RN, Knock J. The need for inpatient palliative care facilities for noncancer patients in the Thames Valley. Palliat Med 1995; 9: 13–18.
66
Boyd KJ. The role of specialist home care teams: views of general practitioners in south London. Palliat Med 1995; 9: 138–144.
67 Barclay S, Todd C, Grande G, Lipscombe J. How common is medical training in palliative care? A postal survey of general practitioners. Br J Gen Pract 1997; 47: 800–804.[Web of Science][Medline]
68 Doyle D, Parry KM, MacFarlane RG. Education in terminal care. J R Coll Gen Pract 1982; 32: 335–338.[Medline]
69 Rogers MS, Barclay SIG, Todd CJ. Developing the Cambridge Palliative Audit Schedule (CAMPAS): a palliative care audit for primary health care teams. Br J Gen Pract 1998; 48: 1224– 1227.[Web of Science][Medline]
70 Blyth AC. Audit of terminal care in a general practice. Br Med J 1990; 300: 983–986.
71 Addington-Hall J, Lay M, Altmann D, McCarthy M. 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 1999; 6: 112–119.
72 McCarthy M, Addington-Hall J, Altmann D. The experience of dying with dementia: a retrospective study. Int J Geriatric Psychiatry 1997; 12: 404–409.[Web of Science][Medline]
73 McCarthy M, Lay M, Addington-Hall J. Dying from heart disease. J R Coll Physicians Lond 1996; 30: 325–328.[Web of Science][Medline]
74 Rees WD. Role of the hospice in the care of the dying. Br Med J 1982; 285: 1766–1768.[Medline]
75 Rhymes JA. Barriers to effective palliative care of terminal patients. An international perspective. Clin Geriatr Med 1996; 12: 407–416.[Web of Science][Medline]
76 Higginson I. Introduction. In Health Care Needs Assessment: Palliative and Terminal Care. Oxford: Radcliffe Medical Press, 1997: 2–5.
77 Charlton R. Palliative care in non-cancer patients and the neglected care giver. J Clin Epidemiol 1992; 45: 1447–1449.[Web of Science][Medline]
78 Finlay I. Training for hospice care. J R Coll Gen Pract 1989; 39: 2–3.[Web of Science][Medline]
79 Butler RN, Burt R, Foley KM, Morris J, Morrison RS. Palliative medicine: providing care when cure is not possible. A roundtable discussion: Part I. Geriatrics 1996; 51: 33–34.[Web of Science][Medline]
80
Cartwright A. The role of hospitals in the last year of people's lives. Age Ageing 1991; 20: 271–274.
81
Clark D, Malson H, Small N, Daniel T, Mallett K. Needs assessment and palliative care. J Pub Health Med 1997; 19: 437–442.
82 Higginson I. Summary. In Health Care Needs Assessment: Palliative and Terminal Care. Oxford: Radcliffe Medical Press, 1997: 1–2.
83
Seale C. Theories and studying the care of dying people. Br Med J 1998; 317: 1518–1520.
CiteULike 
Connotea 
Del.icio.us What's this?
This article has been cited by other articles:
|
|
 |
|
  J. R. Curtis Palliative and end-of-life care for patients with severe COPD Eur. Respir. J., September 1, 2008; 32(3): 796 - 803. [Abstract] [Full Text] [PDF]
|
|
|
|
 |
|
 B. Hanratty, D. Hibbert, F. Mair, C. May, C. Ward, G. Corcoran, S. Capewell, and A. Litva Doctors' understanding of palliative care Palliative Medicine, July 1, 2006; 20(5): 493 - 497. [Abstract] [PDF]
|
|
|
|
 |
|
 I. Jones, A. Kirby, P. Ormiston, Y. Loomba, K.-K. Chan, J. Rout, J. Nagle, L. Wardman, and S. Hamilton The needs of patients dying of chronic obstructive pulmonary disease in the community Fam. Pract., June 1, 2004; 21(3): 310 - 313. [Abstract] [Full Text] [PDF]
|
|
|
|
 |
|
 K. Ogle, B. Mavis, and T. Wang Hospice and primary care physicians: Attitudes, knowledge, and barriers American Journal of Hospice and Palliative Medicine, January 1, 2003; 20(1): 41 - 51. [Abstract] [PDF]
|
|
| ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||