Care of the Seriously Ill in the Community

by Kevin Brazil | Dec 01, 2002

Key Implications for Decision Makers

Many terminally ill people wish to die at home, causing an increased demand for homecare services, both from the patients and from their families and friends who give informal care.

  • Palliative care in the community needs to be organized to allow different professions to work together in multidisciplinary teams, including the use of advanced practice nurses.
  • Health professionals need more education about palliative care. This can start at a basic level by including palliative care in all health professional school curricula.
  • People need more care the closer they are to death, and caregivers need more support as their family member gets weaker. Policies on providing palliative care in the community should be flexible to respond to this need. This will also make it easier for people to die at home.
  • Governments need to address the following factors if they want to make palliative homecare more flexible and improve continuity of care: increasing staff, improving access to specialized care, increasing the availability of family physicians, increasing funding for support services, and re-examining the competitive process cities use to hire homecare agencies.
  • People who die at home should be able to access palliative homecare earlier than they currently do. Most often, families are referred to the community care access centre only immediately prior to death.
  • People who care for the terminally ill often lose income, as they have to reduce their work hours or stop working because of caregiving demands. Informal caregivers need financial support, which will make it easier for them to care for their family members, in turn making it easier for people to die at home.
  • Caregivers of the terminally ill face emotional strain and isolation. They require practical help as well as emotional support.

Executive Summary

This study describes the experience of caring for the terminally ill in the community. It does so by investigating the types of care used, the experiences of those involved in caregiving and bereavement, and their satisfaction with community services.

Researchers found that caregivers feel strained in many ways. Most say the people they care for are limited in the daily activities they can do. The caregivers feel confined, isolated, helpless, and exhausted. They also often have to reduce their professional work hours or stop working because of the time they must spend on care, leading to a loss of income. As a result, caregivers not only require practical help and emotional support, they also need financial help. They are not getting these kinds of help, and policies to address these needs must be developed.

The terminally ill use hospital care and palliative homecare co-ordinated by community care access centres. Most families get homecare services only immediately prior to death, though, whereas for the best care they should have access to palliative services earlier. If families could get support sooner, there would be great potential to ease the strain on caregivers. As well, early access to homecare services may decrease hospital admissions; these increase dramatically in the months just before death. Family physicians and other referring professionals should work with families to increase early access to community palliative care.

Some barriers to adequate service remain even when families are able to get community palliative care. First, services are not flexible in response to changing care needs. As death approaches, people need more care; however, delivery models give each person a set amount of services. Second, patients lack continuity of care. Continuity is defined as patients receiving care from the same person, or at least from the same agency; staff having special training in palliative care; staff using a consistent care plan; a multidisciplinary team delivering care; and staff delivering care based on the status, goals, and expectations of the patients and their families. Some factors that case managers from community care access centres cited as barriers to this continuity are staff shortages, reduced access to specialized care, not having a family physician or having a family physician who does not make house calls, limited funding for support services, and the competitive process cities use to hire homecare agencies. In order to improve community palliative care services, these concerns need to be addressed.

One way to deal with some of these concerns is to make it easier for health providers from various disciplines to work together in teams. This would allow for holistic care and facilitate consultation between healthcare providers. In this way, expertise in palliative care could best benefit the family. To address limited staff availability, access centre case managers recommended using advanced practice nurses who have additional training or certification in palliative care to care for patients who are dying. Overall, there needs to be a mechanism to make sure care is delivered seamlessly, even when taking into account funding, accountability, and communication.

The research team also found that health providers giving palliative services might not have specialized palliative care training. To improve this knowledge among health professionals, palliative care topics should be included in the basic level curriculum of all health professional schools. Also, financial support should be provided to health professionals for ongoing education to ensure that a range of health providers and case managers in the community have some expertise in the delivery of palliative care.

When caregivers knew that death was inevitable, they were able to prepare practically and emotionally by adopting coping strategies. Family and friends were the principal sources of informal practical and emotional support, and formal supports were clergy and family physicians. During bereavement, caregivers needed to interact with others so they could come to an acceptable understanding as to why death occurred. Family and friends played an important role in the recovery process. However, formal care providers should also be prepared to assess and treat complicated grief and bereavement-related depression.

Information for this study was gathered by telephone and home interviews with caregivers and care recipients, and through six focus groups with community care access centre case managers in Southern Ontario.