Palliative Home Care: The Impact on Seniors, Family Caregivers and Community Health Care Providers

Palliative Home Care: The Impact on Seniors, Family Caregivers and Community Health Care

by Georgia Livadiotakis, MA Gerontology Candidate

Caring for a terminally ill person at home can be both challenging as well as rewarding for the many caregivers who make a home death possible. The changing nature of health care delivery in Canada has made community or home care a possible option for terminally ill clients who are wishing to die in the comfort of their home in the presence of their family and friends. Across Canada, home care programs today have integrated palliative care as an essential service within the existing professional and home support services that are presently offered.

The Canadian Palliative Care Association has defined palliative home care as the "active care of patients whose disease is not responsive to curative treatment." This definition affirms that dying is a 'normal' process and as such, health care providers should integrate the various psychological and spiritual aspects of patient care as a means to support terminal patients who need relief from pain. Delivery of palliative care usually begins when the terminal diagnosis is made. Conservatively, palliative care begins at a 3 to 6 month life expectancy; however, service delivery varies according to the patients needs and condition.

Dying at home has been the preferred model for health care delivery among Canadians. In fact, in a recent Angus Reid Report, 84% of all Canadians surveyed indicated a preference to spend their final days at home with the available home support services. The movement of palliative care to the home has been attributed by a number of inter-related concepts, beyond the cost savings critiques which argue that home care is a cheaper form for delivering health care as compared to institutional care. The most vocal advocates of palliative home care are home health care providers and care recipients who argue that the traditional management of terminal illness in the hospital which focuses on curative treatments rather than providing adequate care to the patient continues to dominate health care practices today.

With the most recent federal/provincial and territorial symposium on palliative care in Canada which was held in Ottawa on March 1997, the commitment of governments to improve the quality of care delivered to the terminally ill in Canada was made clear. A number of palliative care professionals met to discuss current and future palliative home care issues in Canada. A number of recommendations were presented at this symposium, one of which is most interesting given the recent initiative by the Chretien Government to examine the possibility of developing a national home care program. These palliative care experts recommended that Health Canada adopt a national approach to palliative home care service as a means to develop collaboration between and among provinces regarding service delivery.

Palliative Home Care and Seniors

Research findings suggest that terminally ill patients, especially those aged over 65, are preferring the care that is being offered through home care programs as compared to the life sustaining techniques received in the hospital. Nevertheless, these studies conclude that disproportionately fewer elderly patients are able to remain in their home and receive the various home support services despite their preferences.

Provincial data reveals that approximately 80 to 90% of the terminally ill in Canada are dying in hospitals or other institutions. These numbers compare to the little over 80% of the terminally ill in the U.S. who die in institutions, and the 75% in the United Kingdom.

Palliative home care offers a number of added psychological benefits to the terminal patient as the physical home environment enhances the patient's independence, and quality of life, as the home is a place of familiarity and comfort

Although a growing number of older adults are preferring to die at home, caring for a terminal client at home may become a great challenge for their caregivers. Research demonstrates that home deaths are largely dependent upon the characteristics of the patient and his/her family. For example, research studies have found that those who are more likely to experience a home death have a higher socioeconomic status as they have greater resources available needed to purchase the home supports and services that may become required if the terminal patient is needing 24 hour care.

Home deaths also become impossible for those who are living alone, do not have a primary family caregiver who is healthy and willing to provide the care needed and in addition, those who have not accepted that their illness is terminal. More interestingly, home care service providers are recognizing that palliative home services are being challenged with the increasing number of persons requesting care be delivered in their single room hotels where no telephone or bathroom is available or those who do not have a home to go to..

Palliative Home Care and Caregivers of Terminally Ill Family Members

Unlike other services offered through home care programs, palliative care services integrate the patient and their family as the unit of care. The family of the terminal patient has been given a proper role in the dying triad of palliative care.

Traditionally, this triad consisted of the physician, the terminal client and the family. I argue that today, with the inclusion of palliative care services delivered at home, this triad includes the client, their family and all home care service providers including the physician. The explicit aim of palliative care is to provide bereavement services for the family of the terminal patient. Bereavement services provide the essential support through counselling to grieving family caregivers. Recognizing and respecting the essential care that is provided by family members is a significant development in long term care services delivery as there is a tendency in community care to undervalue the support that is provided by family caregivers. In fact, there is a tendency among home care providers to view informal carers as mere extensions of the terminal patient rather than as clients in their own right who need to be cared for.

Researchers Field & James (1993) found in their studies that caring for a terminal family member in the home offers caregivers greater control over the care process as they are able to influence the quality of life of the terminal family member. In addition, these researchers argue that caregivers who care for their terminal family members at home are better able to cope through bereavement as the time spent at home with the patient provides the opportunity to resolve their own anxieties about the terminal diagnosis.

In addition palliative care at home affirms that services be in place to support the families throughout and well beyond the care process. Bereavement and other counselling services are offered in various communities throughout Canada to support family caregivers caring for terminal family members in their home. For more information on bereavement services, please contact your local home care program.

Palliative Home Care and Community Health Care Providers

One of the most challenging obstacles in delivering palliative home care as defined throughout the literature is the lack of knowledge on pain management techniques among community nurses and family physicians as compared to oncologist and pain specialists in hospitals. Researchers have acknowledged that this lack of education is one of the leading factors resulting in patient hospitalization.

If community based palliative care is to succeed, governments must provide the essential financial resources needed for better training, research and education. The majority of provinces have begun to increase their funding for such education. For example, the Ontario government has committed approximately $1.58 million annually to the Ongoing Interdisciplinary Education and Physician Education Project which aims to provide adequate training for palliative care service providers (Health Canada, 1997). Similar action has been taken by the Government of Manitoba. A province wide Terminal Care Education Project receives annual funding for training regional home care staff on palliative treatments (Health Canada, 1997). As a means to succeed, continued funding and support from governments is needed as well as the willingness and dedication of regional home care administrators to improve the quality of care practices in the home environment.

Provincial Palliative Home Care Services

Presently, there is no national or provincial social policy governing palliative home care; rather, the overall policy strategy is to integrate palliative care as an essential service of the existing home care programs in the provinces and territories. Palliative care thus becomes a part of the continuum of care offered by provincial home care programs.

Once palliative care begins, the terminal client receives service delivery from an interdisciplinary team consisting of physicians, nurses, health care aides, volunteers, social workers and pastoral care, who all work together towards the goal of providing the physical, psychological and spiritual support needed in order to relieve any pain and suffering that may be experienced by the client at home.

The following provincial descriptions allow caregivers the opportunity to explore how palliative care services are administered and delivered in your province as well as how to obtain service delivery in your community.

ONTARIO

The planning and delivery of palliative home care services are made by local District Health Councils which make recommendations to the Ministry of Health, Long Term Care Division who then provides funding for service delivery to the 43 Community Care Access Centres or CCACs across the province. Any persons who require palliative care services to be delivered in their home may access their local CCAC through a self-referral or through a referral by another person including family members, friends, community service providers and physicians. Upon referral, assessment of the client's needs will follow and the CCAC will purchase services on the client's behalf. There is no charge for these services; payment is made through OHIP. The number of hours allocated for the palliative client largely depends upon the client's condition; however, palliative clients receive more hours of service delivery as compared to regular home care clients.

To obtain palliative care services in your home, please contact your local CCAC. Assessment is based on the client's needs and consideration is given to the availability of family support.

QUEBEC

The provincial government provides the financial support to regional authorities who are responsible for planning and delivering all health services in the region. Palliative care services in the home are delivered through the 157 Centre local de services communautaires or CLSCs at no charge to the client and their family. Palliative care is delivered when the client has been diagnosed as being in the Śend of life stage', or having an approximate 4 month life expectancy. Each regional authority allocates service delivery in response to its regional needs. For example in communities which report higher incidence of AIDs cases, regional authorities will allocate specific palliative care services to meet these clients needs.

To obtain palliative care services in your home, please contact your local CLSC. An open referral system enables any persons to make the referral to the CLSC to begin service delivery on behalf of the client.

MANITOBA

Palliative care is one of the core services provided by the 13 Regional Health Authorities who are responsible for the planning and development of health care services in the province. Manitoba Health provides the funds necessary for the delivery of home services by regional home care programs. Clients may be responsible for covering some of the costs of service delivery in their home; however, a range of service equipment such as home oxygen is covered by the provincial pharmacare program.

To obtain palliative care services in your home, please contact your local home care program for further details. The open referral system will enable anyone to place a referral for service delivery to commence. Service delivery is based on an assessment process, where consideration will be given to the client's condition and the supports that are available through their family.

SASKATCHEWAN

A number of branches within Saskatchewan Health are involved in planning and delivering palliative care services in the province. Saskatchewan Health establishes all health care policy and standards of care as well as redirecting funding to the 32 District Health Boards who are responsible for delivering services to communities across the province. Funding for palliative care services is based upon the terminal client's condition. Recently, Saskatchewan Health has implemented an End Stage Policy which will fully fund all professional and home support services that are delivered in an institution and home environment for only those persons who are Śend stage' or in other words have a 4 to 6 week life expectancy. For palliative care residents who are not end stage, it should be noted that any home support services that are delivered in the home or in the hospital bed, such as meal programs, transportation and homemaking services are not funded by the province and thus the palliative client will be billed for such service utilization. However, professional services including nursing care are fully funded by the province at no expense to all terminally ill persons being care for in both the home and institutional settings.

Residents living in rural communities should be aware of the shortage of staffing resources in particular nurses. To obtain more information on palliative care services in your community, please contact the yellow pages for the telephone number of your local District Health Board. An on-call telephone system is available 24 hours a day, 7 days a week.

ALBERTA

Alberta Health establishes the policies and standards for health care delivery in the province. It also provides the financial resources to the 17 Regional Health Authorities or RHA who are responsible for delivering palliative care to clients in their home. An open referral system allows family members and friends of the terminal client to contact their local RHA, where a case manager will come to the client's home to assess their health condition and needs as a means to deliver the most appropriate services. Since 1991, palliative care clients have become exempt from the monthly service limit of $3000 month and 24 hour care that applies to regular home care clients. This exemption will therefore allow palliative clients the flexibility of receiving greater amounts of care in times of deteriorating health condition and other changes which may affect their caregiving situation.

Residents who are interested in obtaining more service information about palliative care in the province should contact Alberta Health to obtain a copy of Palliative Care: A Policy Framework, which was released in December 1993. This report will guide caregivers through the complex system of service delivery in both the community and institutional settings as well as identifying service eligibility. To obtain palliative care services in your home, please contact your local Regional Health Authority.

BRITISH COLUMBIA

Funding for palliative home care is directed from the Ministry of Health, Continuing Care Program Division to the Regional Health Authorities or RHA. In more populous regions such as Vancouver, the regional health authority is the Regional Health Board. In less populated regions, Community Health Councils or Community Health Service Societies are established. These RHAs are responsible for the planning and coordination of service delivery in their region. As an insured service in the province, residents wishing to obtain palliative care services in their home must be a permanent resident of Canada or a Canadian citizen and must be a resident of B.C. for at least one year.

To obtain palliative care services in your community, please contact your local RHA or to obtain more information on health care service delivery in the province please contact Inquiry B.C. which offers British Colombians a toll- free referral/information line on the various ministerial programs and services available in the province. Palliative services vary from region to region, thus service delivery is allocated depending on the client's health condition and the availability of support services offered in the community.

Inquiry B.C.: Hours: Monday - Friday 8:00 - 5:00 Residents of Victoria, call: 387-6121 Residents of Vancouver, call: 660-2421 Residents elsewhere in B.C., call: 1(800) 663-7867 Telephone device for the Deaf: Vancouver: (tdd) 775-0303 Elsewhere: 1 (800) 661-8773

NOVA SCOTIA

Despite regionalization, the Ministry of Health has not yet transferred responsibility for health service delivery to the 4 regions in the province. Although Home Care Programs have integrated hospital services in the home, palliative care has yet to be developed in the community. Instead, terminally ill residents use chronic care services in replace of palliative treatments. Funding for these services are provided by the provincial government and referral to the home care program is based on the assessed need for service of the terminal client.

To obtain palliative care services in your home, please contact your local home care program for more information.

NEW BRUNSWICK

The financial resources required to allocate palliative home care services is directed from the provincial government, Department of Health and Community Services. A Regional Palliative Care Committee assists in the planning and coordination of service delivery across the province so that services are able to meet the local needs of palliative home care clients. The provincial Extra-Mural Programs are responsible for delivering palliative care services to terminal clients in their home at a co-payment cost to the client for home support services only. Any professional care services such as therapy and nursing are fully subsidized by the province. Assessment of the client is based on need for service and the condition of their health.

To obtain palliative care services in your home, you must first contact your family physician who will then make a referral to the Extra-Mural Program on your behalf.

PRINCE EDWARD ISLAND

Palliative home care is the most recent service development in the provincial Home Care Support Programs. The provincial government provides home support programs with an annual budget to deliver health care services into the community. A single entry system into the home support program allows any persons to request home care service delivery on the terminal client's behalf. Payment for equipment and services may apply; however, residents should note that the cancer society in P.E.I may cover any costs that are incurred by the client and their family.

For more information or to obtain palliative services in your home, please contact your local Home Support Program.

NEWFOUNDLAND

Continuing Care Programs across the province deliver palliative care to terminal clients wishing to remain in their home. Global budgets from the Ministry of Health are passed down to the Continuing Care Programs in order to meet the needs of residents in the region. A Comprehensive Palliative Care Committee assists in the planning and development of palliative care in the province. Although professional care services delivered in your home such as nursing care are fully subsidized by the province, a charge for receiving home support services such as meal programs and homemaking may apply.

For more details about palliative home care services or to obtain service delivery in your home, you may contact the Continuing Care Program on the terminal client's behalf.

YUKON

The Department of Health and Social Services provides the financial resources to the Yukon Home Care Program to deliver professional and home support services to those needing health care in their home. Interestingly, although home support services are provided by the Yukon Government, responsibility for delivering physician and nursing care are delivered by the Federal Government in Ottawa. Although prescription drugs and some home equipment are not paid by the government, assistance for payment may be obtained from the Chronic Disease Program. The Chronic Disease Program will only subsidize equipment and prescriptions drugs on a payer-of-last-resort basis.

To obtain more information about palliative home care services in your community, please contact your local Home Care Program. Referrals are open to anyone who may speak on behalf of the terminal client. However, services will be delivered when the terminal diagnoses has been made.

NORTHWEST TERRITORIES

In 1997, provincial Home Care Programs were allocated responsibility for planning, coordinating and delivering palliative care services in the home. Funding for home care services is established by the NWT Government who allocates funding based on a regional population formula. This funding formula allows the government the opportunity to distribute resources based on regional needs. In addition, this formula delineates greater resources for more populous regions as compared to those less populated.

To obtain palliative home care services, residents must first contact their family physician or call directly to the Home Care Program and speak to a home care coordinator. The province is currently developing a single entry system into community care which will allow any persons close to the terminal patient to make a referral to the Home Care Program to commence service delivery.

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