VOL 49: DECEMBER • DÉCEMBRE 2003 Canadian Family Physician • Le Médecin de famille canadien 1581
Palliative care at home
Dying at home: an increasingly important trend
Lucie Baillargeon, MD, MSC
O
ver the past decade, the number of cancer patients dying at home or in palliative care cen- tres has increased. In Nova Scotia, the percentage of patients who chose to die at home or in palliative care centres rose from 19.8% in 1992 to 30.2% in 1997.1 In the Edmonton, Alta region, the percentage of cancer patients who died in acute care facilities decreased from 86% in 1992-1993 to 49% in 1996-1997. During this period, deaths in palliative care centres increased from 0 to 30% and at home from 10% to 18%.2Organizational, demographic, and social factors explain this trend. The restructuring of the health care system has led to a decrease in the number of hospi- tal beds and in length of hospital stays. In Ontario, the average length of stay of cancer patients during the last 6 months of life decreased from 34 days in 1986 to 23 days in 1998.3 The development of regional pal- liative care programs has drawn clients to specialized palliative care services.1,2,4 Most of the studies on pref- erences about place of death indicate that patients with advanced cancer want to die at home.5 In the next few years, the aging population will result in an unprec- edented increase in deaths from chronic conditions, such as heart disease, lung disease, and cancer, and in the number of patients wanting to die at home.
Family physicians should provide more palliative care
Despite regional initiatives to increase access to specialized palliative care, only a few patients have access to these services. For example, in Quebec, it is estimated that only 5% to 10% of the population has access to palliative care.6 Consequently, family physi- cians must begin providing more care to patients in the terminal phase of their illnesses.
According to a Quebec survey,7 more than 60% of
“regular” family physicians are already providing care to patients in the terminal phase of their illnesses.
The percentage of time devoted to these patients is limited, however; 70% of physicians see two patients or fewer per month, and 55% spend 2 hours or less per week providing palliative care.
Most patients want to maintain their relationships with their family physicians when they leave cancer treatment centres.2 Because their relationships pre- date the diagnosis of cancer, physicians are already familiar with patients and their families. When it comes time for the transition from active care to comfort care, specialists often stop following patients.
This is also when some patients find it more difficult to travel. Family physicians are, therefore, able to provide continuity of care for patients at this stage of life. Having a family physician who makes housecalls is one of the predictors of home death.8
Roles of a family physician
In providing palliative care at home, family physicians draw on all their clinical skills, as well as their abil- ity to work cooperatively with caregivers and other members of a patient’s care team.
The first aspect of palliative care is symptom man- agement. This is a major source of anxiety for patients, and physicians who provide little palliative care often do not feel competent in this area. The main sources of suffering of patients in the terminal phase of illness are pain, dyspnea, nausea, vomiting, and psychological symptoms. Gallagher’s article in this issue (page 1611) presents a clinical approach to dyspnea. As is true of most of the symptoms common at this stage of life, the most effective treatments do not require sophisti- cated technical expertise. Family physicians caring for patients who are experiencing dyspnea or other symp- toms difficult to bring under control can also consult regional palliative care resources. One of the missions of these services is to support colleagues.
Home-care services should assess a patient’s needs early on. We know, however, that things are not always that simple. Many patients and caregivers are reluctant to allow “strangers” to become involved in their personal affairs. They accept help with care or household chores only when faced with a crisis.
One of our roles is to help patients and their caregiv- ers plan for home-care services as a strategy for pre- serving autonomy in the future.
Editorial Editorial
1582 Canadian Family Physician • Le Médecin de famille canadien VOL 49: DECEMBER • DÉCEMBRE 2003
editorial
Physicians must also identify natural caregivers and work in close cooperation with them. In fact, a caregiver’s desire to have a patient die at home and the presence of at least two natural caregivers are two other predictors of home death.8 During the national convention on palliative care held in Quebec city in June 2003, a natural caregiver compared the process of caring for a dying family member to a mar- athon—with one important difference. Caregivers never know how many kilometres they still have to run (personal communication from Hivon C.
Témoignage d’un proche. Congrès national de soins palliatifs, Quebec, Que: 2003 June 15-18). One of our tasks is, therefore, to support these natural caregiv- ers: be on the lookout for symptoms of exhaustion and find solutions with them.
During the final weeks of life, new symptoms often appear, and existing symptoms might suddenly become worse. Physicians and nursing staff must be able to monitor these symptoms closely and respond quickly to calls for help at all hours. In our practice, palliative care patients can be registered in a regional on-call system. A nurse who can be reached outside regular office hours can call the on-call physician if necessary. Twenty-six physicians are involved in the on-call system, which is managed by the local com- munity service centre. Each physician works 2 weeks of on-call duty per year. This system offers palliative care patients the assurance that they will have access to emergency services. It enables family physicians to provide end-of-life care at home without the need to be available constantly.
Physicians must try to anticipate symptoms that will appear as the illness progresses. There are many strategies for preventing a crisis: telling patients and their caregivers about the symptoms that usually occur at the end of life and that are often distressing (eg, anorexia, the sequence of the process of dying);
explaining the benefits and side effects of various therapeutic interventions; correcting any mispercep- tions that patients or their caregivers have about cer- tain interventions (eg, the notion that increasing the dose of narcotics used for symptom control is a form of euthanasia); and preparing prescriptions (eg, mid- azolam available at bedside).
There are many ethical questions at this time of life. Previous studies on this subject have focused mainly on health care professionals and ethicists.
The study by Towers et al in this issue (page 1626), describes how patients, their families, and nonphysi- cian staff perceive the communication problems that family physicians must address, such as patients or families with unrealistic expectations or patients who
want to hand their autonomy over to their physicians, expecting the physician to make all of the decisions.
Although most cancer patients say they want to die at home, this decision must be reviewed regularly, based on the clinical course and the support that fam- ily and friends are able to provide. It is not unusual for a patient or the main caregiver to become increas- ingly uncomfortable with this decision as the illness progresses, even when provision of care and services is optimal. If, in the end, a patient decides to die in a health care institution, being cared for at home by a physician will still have made it possible to reduce the number of admissions to hospital in the months leading up to death.
Conclusion
Family physicians should provide more palliative care at home. Most patients with cancer want to die at home. With our aging population and restructuring of the health care system, the number of patients who want to die at home is likely to increase. Although specialized palliative care resources have been devel- oped, they will not be able to meet all needs. Family physicians have a privileged relationship with their patients—one that enables them to assume overall management of their patients’ needs.
In order for patients to remain at home until they die, several conditions must be met. Physicians must periodically reassess the decision to continue pro- viding care at home with patients, natural caregiv- ers, and the other health care professionals involved.
When dying at home is not feasible, the goal then becomes to help patients live comfortably at home for as long as possible.
Dr Baillargeon is Associate Scientific Editor of Canadian Family Physician.
The opinions expressed in editorials are those of the authors and do not imply endorsement by the College of Family Physicians of Canada.
References
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