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David Clark
Academic Palliative Medicine Unit, University of Sheffield, Trent Palliative Care Centre, Sykes House, Sheffield S11 9NE
Palliative care has encouraged medicine to be gentler in its acceptance of death, yet medical services in general continue to regard death as something to be resisted, postponed, or avoided. David Hart examines the challenge facing doctors to balance technical intervention with a humanistic approach to their dying patients
We have grown used to speaking of medicalisation as a byword for all things
negative about the influence of modern medicine on life and society.
The term has become synonymous with the sense of a profession
reaching too far: into the body, the mind, and even the soul itself.
Its use is now almost always pejorative, negative, and antagonistic.
When Ivan Illich developed his original critique of medicalisation in
the mid-1970s, he highlighted its particular impact upon the dying
process in modern culture and could claim that modern medicine had
"brought the epoch of natural death to an end" (box 1).1
| Summary points
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The rise of palliative care |
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Yet well before Illich a climate of concern was already developing about contemporary means of dying and medicine's part in them. The emergence of terminal and hospice care, and subsequent endorsement of the specialty of palliative medicine, is a clear expression of this.
Concerns about improving care at the end of life began to surface on both sides of the Atlantic during the 1950s. In Britain attention focused on the medical "neglect" of dying people; whereas in the United States a reaction to futile treatments in the face of suffering and inevitable death began to take root.
Four particular innovations can be identified.2
Firstly, a shift took place in the literature on the care of dying people,
from idiosyncratic anecdote to systematic observation and research.
By the early 1960s leading articles in the Lancet and the
British Medical Journal were drawing on such evidence to suggest
ways in which terminal care could be promoted and indeed arguments
for euthanasia might be countered. Secondly, a view of dying began
to emerge that sought to foster concepts of dignity and of meaning
along with a new openness about the terminal condition of patients.
Thirdly, an active rather than a passive approach to the care
of dying people was promoted in which the fatalistic resignation of
the doctor ("there is nothing more we can do") was supplanted by a
determination to find new and imaginative ways to continue caring up
to the end of life. Fourthly, a growing recognition of the
interdependency of mental and physical distress created the potential
for a more embodied notion of suffering, thus constituting a profound
challenge to the body-mind dualism on which so much medical practice
of the period was predicated
brilliantly
captured in Cicely Saunders' notion of "total pain."3
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When Cicely Saunders, the outstanding innovator in the field, founded St
Christopher's Hospice in Sydenham in 1967, it quickly became a source
of inspiration to others. Within a decade it was accepted that the
principles of hospice care could be practised in many settings: in
freestanding hospices and in home care and day care services.
Likewise, hospital units and support teams were established, designed
to bring the new thinking about dying into the very heartlands of
acute medicine. The term "palliative care," first proposed in 1974 by
the Canadian surgeon, Balfour Mount,4
came to symbolise this broadening orientation.
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Countervailing problems |
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Yet just as palliative care has encouraged medicine to be gentler in its acceptance of death, parallel developments in the medical system have redoubled efforts in the opposite direction. One aspect of this is the problem of futile treatments that either have a low probability of having an effect or produce an effect that is of no benefit to the patient. Further problems derive from the widespread assumption in society that every cause of death can be resisted, postponed, or avoided.5
In the United Kingdom almost a quarter of occupied hospital bed days are
taken up by patients who are in the last year of life6
and some 60% of all deaths occur there. Thirty seven per cent of
patients admitted to UK intensive care units die within six months,7
and the bill for these units in 1999 was estimated at between £675m
($961m; 
1095m) and £725m, increasing by 5% annually.
Commenting on the modern epidemic of multiple organ failure, Bion
and Strunin observe that "it costs twice as much to die in an
intensive care unit as it does to survive."8 One
New York hospital found that among a group of elderly patients with
advanced cancer or dementia, overall 47% received invasive
non-palliative treatments during their final few days; 51% of
patients with dementia and 11% of patients with cancer received
enteral tube feeding, and all still had the feeding tube in place at
death.9
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Commentators on the widely cited SUPPORT study in the United States described
dying patients as "caught up in a medical juggernaut driven by a
logic of its own, one less focused on human suffering and dignity
than on the struggle to maintain vital functions."10
Seymour summarises a literature that has accumulated over the
past 30 years on the social isolation of dying patients in hospital,
of dehumanised dying, and of the failure of medical technology to
coexist appropriately with dignified dying.11
Small wonder that death in the hospital was recently described by one
German physician as something akin to an "industrial accident" (Friedemann
Nauck, personal communication, 2002).
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Broadening the boundaries of palliative care |
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As these increasingly technical approaches to care at the end of life have
gained influence, the newly formed specialty of palliative care has
concentrated on two distinct issues.12 First
is the impetus to move palliative care further upstream in the
disease progression, seeking integration with curative and rehabilitation
therapies and shifting the focus beyond terminal care. Second
is a growing interest in extending the benefits of palliative care to
those with diseases other than cancerto
make "palliative care for all" a reality. The new specialty is
therefore delicately poised. For some, integration with the wider
system is essential for success and the only realistic way to address
unrelieved suffering at the end of life as a public health problem.
For others, it marks the entry into a risky phase of new development
where early ideals might be compromised. Modernisers claim that
specialisation, integration, and the development of an "evidence
based" model of practice and organisation are crucial to long term
viability. Others mourn the loss of early ideals and regret the new
emphasis on physical symptoms at the expense of psychosocial and
spiritual concerns. In short, some have claimed that the dark forces
of medicalisation and "routinisation" are taking hold and even that
the putative "holism" of palliative care philosophy masks a new,
more subtle form of surveillance of dying and bereaved people
in modern society.13
Yet in print, in conferences, and in their daily clinical work, specialists in palliative care seem to lack clarity and confidence when defining precisely what they do and how it differs from other health care. Part of the problem lies in a field that "relates to a stage of a patient's condition, rather than its pathology."14 Palliative medicine thus has some of the hallmarks of a postmodern specialty:15 it lacks a specific disease, bodily organ, or life stage to call its own. For this reason it has been drawn towards a model that overarches the course of the illness and is unified by quality of life goals.
Yet the adoption of "quality of life" as a goal of palliative care conceals many problems, several of which are structural, economic, and social and lie beyond the immediate influence of clinical medicine.16 To attend to suffering rather than quality of life may therefore seem a more realistic aim for palliative care, one that is more compatible with the wider goals of medicine and which might help to address problems about futility and overtreatment. But this has raised fears of selling out to a medical model in which suffering is only a problem to be solved and specialists in palliative care become symptomatologists, in just another specialty.17 As the specialty develops, its medical attention tends to focus on pain and symptom management as a bounded set of problems within the relief of suffering. Here may lie the charge of creeping medicalisation. Yet it is in this biomedical area of palliative care that measurable and striking successes are to be found in the use of pain relieving and symptom controlling technologies. A recent study claims, for example, that in the palliative care unit of one Australian teaching hospital 81% of interventions were based on findings from randomised controlled trials or other trials or on convincing non-experimental evidence; yet of 24 problems listed, all but two (depression and delirium) were physical rather than psychosocial or spiritual in type.18 Not surprisingly, some consider this symptom analysis and management to lie at the heart of the specialty.19
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Who wants the good death? |
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From the outset, achievement of the "good death" has figured as a goal of
palliative care (box 2). But the shift from "terminal"
to "palliative" care has brought about a diminished emphasis on
the good death,20 which now has a reduced
significance in the discourse of pain and symptom management.
"Mainstreaming" palliative care into the central functions of the
healthcare system produces a greater concentration on the problems of
the living than the dying population. A shift "upstream" to earlier
stages in the disease processand
the inclusion of chronic, life limiting conditionspromotes
the rhetoric of quality of life versus a good death. Consider
the following, from an Italian study of quality of life and outcomes
in palliative care: "Dying during the study period is a strong
indicator of patients who entered the palliative care intervention in
very poor health conditions. We expected and observed a worst
[quality of life] outcome for patients like these."21
The authors could be forgiven for implying that the patients had
somehow got things wrong.
Is this evidence of the medicalisation of death? In part only. Paradoxically,
what we are seeing is the medicalisation of palliative care, a
specialty that opens up a space somewhere between the hope of cure
and the acceptance of death. In doing so, it makes a classic appeal
to the desires of "patients" in a modern culture, where we dread not
so much the state of death as the process of dying. In this sense it
is more appropriate to view medicalisation as the expected rather
than unintended outcome of the growth of palliative care, especially
in the British context, where medical pioneers are central to its
history.
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Conclusion |
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What light does this shed on the original critique of the medicalisation of
dying? At the time Illich was writing, the mid-1970s, a much more
unitary and optimistic view of medicine was in evidence than exists
today, and this was a basis for his critique. Now the modern medical
system is pervaded with doubt, scepticism, and a mistrust of expert
claims. In a sense he has won the argument. Medicine has become more
disassembled and further divided into micro-specialisms. In this
context, is palliative medicine contributing to the medicalisation of
death, despite its early intentions? The answer is probably yes; and
for some patients, pain and other physical suffering are better
controlled as a result. It is inappropriate to see this as an example
of either medical imperialism or the world we have lost. The
challenge for palliative physicians is no different to that facing
their counterparts elsewhere in medicine: how to reconcile high
expectations of technical expertise with calls for a humanistic and
ethical orientation for which they are largely unselected and only
partially trained.
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Footnotes |
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Competing interests: None declared.
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References |
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| 1. | Illich I. Limits to medicine: medical nemesis: the expropriation of health. London: Marion Boyars, 1976. |
| 2. | Clark D. Cradled to the grave? Preconditions for the
hospice movement in the UK, 1948-67. Mortality 1999; 4: 225-247 |
| 3. | Clark D. "Total pain" disciplinary power and the body in
the work of Cicely Saunders, 1958-67. Soc Sci Med 1999; 49: 727-736 |
| 4. | Mount B. The Royal Victoria Hospital Palliative Care Service: a Canadian experience. In: Saunders C, Kastenbaum R, eds. Hospice care on the international scene. New York: Springer, 1997. |
| 5. | Bauman Z. Mortality, immortality and other life strategies. Oxford: Polity, 1992. |
| 6. | Seale C, Cartwright A. The year before death. Aldershot: Avebury, 1994. |
| 7. | Audit Commission. Critical to success: the place of efficient and effective critical care services within the acute hospital. London: Audit Commission, 1999. |
| 8. | Bion J, Strunin L. Multiple organ failure: from basic
science to prevention, [editorial]. Br J Anaesthesia 1996; 77(1): 1-2 |
| 9. | Ahronheim JC, Morrison RS, Baskin SA, Morris J, Meier DE.
Treatment of the dying in the acute care hospital: advanced dementia and
metastatic cancer. Arch Intern Med 1996; 156: 2094-2100 |
| 10. | Moskowitz EH, Nelson JL. The best laid plans. Hastings' Center Report (Supplement) 1995;Nov-Dec:53-5. |
| 11. | Seymour JE. Critical momentsdeath
and dying in intensive care. Buckingham: Open University Press, 2001.
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| 12. | SMAC (Standing Medical Advisory Committee)/SNMAC (Standing Nursing and Midwifery Advisory Committee). The principles and provision of palliative care. London: HMSO, 1992. |
| 13. | Clark D, Seymour J. Reflections on palliative care: sociological and policy perspectives. Buckingham: Open University Press, 1999. |
| 14. | Doyle D. Palliative medicinea
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| 15. | Mathers N, Rowland S. General practicea
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| 16. | Clinch JJ, Dudgeon D, Schipper H. Quality of life assessment in palliative care. In: Doyle D, Hanks GWC, MacDonald N, eds. The Oxford textbook of palliative medicine. 2nd ed. Oxford: Oxford University Press, 1998. |
| 17. | Kearney M. Palliative medicinejust
another specialty? Palliative Med 1992; 6: 39-46 |
| 18. | Good P, Stafford B. Inpatient palliative medicine is
evidence based. Palliative Med 2001; 15: 493-498 |
| 19. | Ahmedzai S. Five years, five threads [editorial].
Progress in Palliative Care 1997; 5: 235-237 |
| 20. | Biswas B. The medicalization of dying: a nurse's view. In: Clark D, ed. The future for palliative care. Buckingham: Open University Press, 1993:135. |
| 21. | Paci E, Miccinesi G, Toscani F, Tamburini M, Brunelli C,
Constantini M, et al. Quality of life assessment and outcome of palliative
care. J Pain Symptom Management 2001; 21: 179-188 |
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Collections under
which this article appears:Environmental
Issues Helicobacter
pylori End
of Life Decisions Long
term care |
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