Does doctors' own fear of dying hinder palliative care?
Fran Lowry
CMAJ 1997;157:301-2
[ en bref ]
Fran Lowry is a freelance writer living in Toronto.
© 1997 Fran Lowry
In brief
Humans have a deeply rooted, existential fear of death that lurks suppressed in their unconscious most of the time. Dr. Balfour Mount, a palliative care specialist, thinks this is one of the factors preventing the health care system from providing good and compassionate care for the dying.
En bref
L'humanité a une crainte existentielle de la mort qui est ancrée profondément et se tapit, réprimée, dans l'inconscient la plupart du temps. Le Dr Balfour Mount, spécialiste en soins palliatifs, pense qu'il s'agit là d'un facteur qui empêche le système de soins de santé de prodiguer aux mourants des soins marqués par la bonté et la compassion.
Dr. Balfour Mount says people who provide health care are so afraid of death themselves that fear compromises their ability to administer to the needs of terminally ill patients.
Mount, chair of palliative medicine at McGill University and founding director of the Palliative Care Service at Montreal's Royal Victoria Hospital, thinks this is why the potential of palliative care -- to alleviate suffering in the dying -- has not been fully realized in Canada 2 decades after its launch.
"It's been 20 years since the opening of the Palliative Care Unit in the Royal Vic," Mount said during the 7th Annual Meeting on Palliative Care, an annual event presented by Humber College in Toronto. "We've learned a lot from the patients and families: that there is a great burden of suffering for patients who have advanced disease, that this burden is unnecessary and that it goes largely unrecognized by the health care system."
The health care system has only 3 aims when it comes to treatment: to cure, to prolong life and to increase the quality of life. But when these things become impossible because of limits on what can be done for the terminally ill, said Mount, care deteriorates, both quantitatively and qualitatively.
"Patients in this category find themselves receiving inadequate care. They did 22 years ago, when hospice came to North America. They do today. The need is great for the 80% of us or more who die in institutions, hospitals and nursing homes. We die badly."
Mount thinks the orientation of today's medical health care team fosters a half-hearted approach to palliative care. Nurses don't welcome being assigned to dying patients and many are uncomfortable conversing with them. As death approaches, interactions between patients and staff become strained and patient care is affected.
Typically, interns and residents have a lack of concern for patients' psychosocial needs. Terminally ill patients do not receive adequate pain control, despite repeated statements by proponents of palliative care that medical science can deal with almost every kind of pain.
Mount said problems are made worse by hospital routines designed to satisfy operating efficiency and the needs of staff. "A Lancet editorial on 'the blocked bed,' which is what hospitals call a bed that is occupied by a terminally ill patient, pointed out that when patients entered this category and we can no longer expect our treatments to modify the natural history of the disease and either cure or prolong their life, doctors visit less frequently and stay for shorter
periods."
Mount said Canadian physicians and other members of the health care team provide some of the best health care in the world by focusing on 4 areas: investigating, diagnosing, prolonging life and curing. A fifth area, dying, is often ignored, and this tends to hamper doctors' ability to see the real needs of terminally ill patients.
Mount said the process of depersonalization that takes place in hospitals, during which patients become "the fracture in room 201" or "the gallbladder in room 202," is another reason why health care professionals fail the dying. "We don't know who these people who are dying on our wards really are," he noted.
Poor listening skills also prevent care providers from seeing the needs of the terminally ill. "Most of us were trained as professionals and we had little training about how to listen, or active listening. So we may not hear the symbolic language or the nonverbal communications."
Perhaps the most powerful reason why physicians don't meet patients' needs involves their intrinsic anxiety about death -- Mount thinks doctors avoid being around dying patients because of this.
"If we have an unconscious angst provoked by the patient, it is little wonder that we are less well primed to see and assess what their needs are. Death-related anxiety is an important part of our psychic milieu. We are also uniquely unprepared as a society to cope with death. This is why the needs go unmet, and the suffering is unnecessary."
Mount said there is still a shortage of palliative care facilities across the country, even though there is proof that a hospice service can be integrated successfully into a tertiary care teaching hospital. When palliative care was introduced in Canada there were doubts that this integration could succeed, but examples like the Palliative Care Unit at the Royal Victoria have proven that palliative care works well in hospitals.
This leaves Mount wondering why there aren't more active palliative care programs in Canada's teaching hospitals. "We've known that it's possible for more than 2 decades. Why do we still justify having teaching centres that do not have palliative care programs?"
The cost of providing care in a palliative care ward is comparable to costs in other wards, Mount commented. "It is not low-cost care, but whoever said it should be? These are the sickest patients in our institution with the most complex needs. Yet, we can give them world-class care and have them comfortable without heightening costs."
He concluded that well-developed palliative care programs can enrich medical teaching and research. "A blocked bed can be transformed into a bed where the patient is the focus of great teaching and research, but it's research where the focus is on suffering and whole-person care, as opposed to being simply focused on the biology of the disease."
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