Why is there a need to focus on rural people: Canada Roger Thomas, MD, Ph.D, CCFP, MRCGP, Professor, Department of Family Medicine, University of Calgary

Dramatic changes in percentages dying outside hospitals in Canada Percentage dying in hospital % % 2004 (except Quebec) 61% 2004 (including Quebec) 67% Same trend for: ► all ages ► both genders ► marital status ► born in/outside Canada ► all diagnoses ► rural compared to urban Provinces 25% of individuals in 2004 died at home (20% in 1994)

Where do palliative home care patients in Canada die? 80% are ambulatory until the last few days and die at home 20% experience a severe reduction in health status and are hospitalised or admitted to a nursing home

1. Rural residents have a unique perspective about their preferences for end of life care and ideas of a “good death” Preference to be cared for family and friends and in their own community Respondents commented adversely on the experience of friends who had died in remote hospitals, sometimes after several transfers (“senior shuffle” involved orienting to new physicians and nurses) Transport for elderly family members for e.g. 150 km is expensive and results in fewer visits Clergy, family and friends find it difficult to be a patient advocate in distant hospitals where they are not known because the Privacy Act makes some physicians and nurses reluctant to discuss details Concern over errors in hospitals, impersonal care [Wilson DM, Fillion L, Thomas R, Justice C, Bhardwal PP, Veillette A- M. The “Good” rural death: A report of an ethnographic study in Alberta, Canada. J Palliative Care 2009;25(1):21-29].

2. Rural people care about their community and are motivated to provide end-of-life care at home or in their local hospital “A good or dignified death can only occur at home” Family and church members who visit frequently are essential to maintain the person in their home To maintain dignity and personal integrity individuals need control over their fate Families plan to create “an environment of enjoyment and happiness during the final days” In the home community there is more personal care, compassion and understanding, not “just a number” The physicians and nurses are well known over many years

3. In rural areas a network of volunteers and professionals provides care Individuals are rapidly admitted to the local hospital or nursing home if needed, without the long waits in city hospitals Some local hospitals or nursing homes have palliative care suites and volunteers can easily enter Lawyers, tradespeople, and hairdressers known for years can easily visit

4. Problems unique to rural areas There may be only one physician so there is no choice Local health care staff may have limited skill in end of life care. Rural mental health specialists are rare There may be little coordination of end of life care Travel from remote areas is difficult and expensive

Needs for improved rural end of life care Caregiver training 90% of 122 rural nurses, homemakers, social workers and pastoral care workers in Ontario said they did not specialise in palliative care Rural physicians in Manitoba in 2002 said their knowledge of symptom management was adequate but 41% had received no palliative care education Families say they need: better communication about care, better symptom and pain control, more home care (family exhaustion is common), better transport to hospital when needed First Nations individuals mostly die in large urban hospitals isolated from family although most want to die at home [Wilson DM, Justice C, Sheps S, Thomas R, Reid P, Leibovici K. Planning and providing end-of-life care in rural areas. Aging, Spring 2006;22(2): ].

Conclusions: Requirements to achieve best-practice palliative care 1.Universality: consider all dying persons as having needs for support 2.Coordination of care by a care coordinator for each person 3.Universal access to basic end-of-life care services. Most individuals only require support for basic care such as meals, walking, toileting, transport, bathing. Integration of care with family to avoid carer burnout 4.Universal access to advanced end-of-life care services. Specialised symptom care should be provided by visiting specialists or through skype. Transport to specialised care should be readily available and free. [Wilson DM, Birch S, Sheps S, Thomas R, Justice C. Researching a best-practice end-of-life care model for Canada. Canadian Journal on Aging 2008;27(4): ].