The words “palliative care” and “hospice” evoke a jolt of realization that one day none of us will be physically present in this world. How we make our final exit is of great concern to us and to our families and friends. Rather than fear, those two words should provide comfort, in that the aim is to give assurance that suffering will be relieved, and the quality of life maintained paramount for those living with a life-limiting illness at an advanced stage. The approach is holistic, helping us to live out our life in dignity.
Through the work of the Canadian Hospice Palliative Association with links to every provincial association, we learn not only of the steps forward being made across the country, but also of the great need for increasing these resources in Canada.
On October 8, 2015, Jennifer Yang, writing in the Toronto Star reported that the Economist Intelligence Unit had published its second Quality of Death report, ranking 80 countries on end-of-life support, including ongoing palliative care. In this survey, Canada dropped from 10th place in 2010 to 11th.
Countries were scored out of 100 on 20 indicators in five categories: palliative and health care environment; human resources; affordability of care; quality of care; and community engagement. Each was weighted differently.
Top of the list is the U.K., largely due to comprehensive national policies, including the integration of palliative care into its National Health Service, as well as a strong hospice movement. In general, the report makes clear that what is required is a comprehensive national strategy with clearly defined targets and mechanisms in place to achieve targets. When it comes to quality of care, it is no surprise that richer countries do better. However, Mongolia, which has lifted itself to 28th place out of 80 countries, has defied the odds. The driving force is Dr. Odontuya Havaasuren, who has lead the building of a national program, which includes changing pharmaceutical regulations, training specialists in palliative care, as well as convincing educators to include it in the curricula for doctors, nurses and social workers.
Although Canada is still among the top providers, we are out-performed by leading countries in two areas: affordability and lack of a strong national strategy. In her 2014 report , Sharon Baxter, Executive Director of the Canadian Hospice Palliative Care Association, points out that only 16% to 30% of Canadians who die have access to or receive hospice palliative and end-of-life care services, and the availability depends on where they live in Canada. She also notes that families have to pay for 25% of the total cost of at home palliative care, usually for extra nursing and personal care services.
In the last issue we reported about programs in Alberta, Manitoba, Quebec and Nova Scotia. In this issue we will continue with services available in British Columbia and Ontario.
Faced with the unwelcome information that one’s time is limited, what is the path for care for a resident of B.C? Lorraine Gerard, Executive Director of the British Columbia Hospice Palliative Care Association advises that the first step is to discuss options with one’s family doctor or health care team. If someone is in a hospital, the social worker who helps with discharge planning can also be part of that team. Once again we are reminded that it is time to ‘put our affairs in order’, which would include an Advanced Care Plan; the health care team can help with that. It is also a good idea to ensure that wills, power of attorney for both property and health care are in place, and that family and/or friends involved are kept up-to-date on your wishes. The ‘gatekeeper’ for access to stand-alone hospices or hospices within another type of health facility is the Home and Community Care assessment, which includes nurses, together with your family doctor or specialists, and acute care discharge planners.
Once in a hospice, there is usually a per diem rate set. However, the Health Authorities have provisions in place to ensure that all will be cared for. As for accessibility, there are various models of hospice palliative care and services across BC including free-standing hospices in larger communities and hospice ‘spaces’ or ‘beds’ in smaller communities housed in long term care homes or hospitals. There are also home care teams to support those who choose to stay at home and receive services there. However, the access to home support services varies across the province.
BC does have the added benefit of a rich hospice volunteer base in most communities where trained volunteers will spend time with those at end-of-life and their loved ones to provide support and emotional care. BCHPCA Organizational Members (Hospice Societies) are located throughout the province. Some have a hospice house, others provide support to people at end of life in hospital, long term care and/or in their own home. Hospice Societies also provide grief and bereavement support to families and other loved ones.
Anyone wishing to know about the specific services provided by BCHPCA Member Organizations, can look them up on their website, or call 604-267-7014, or 1-877-410-6297/
The BC Ministry of Health has a good website regarding End of life Care and Palliative care that covers eligibility, payment, etc.
Helen Reilly, Communications and Information Officer for Hospice Palliative Care Ontario also emphasises the need for Advanced Care Planning. This is in addition to having in place Power of Attorney for Property and also for Personal Care. Family and/or friends have to know what your wishes are if you are unable to speak for yourself or – even if you are able – you feel the need to talk out the situation so as to arrive at the best decision for everyone. This is not necessarily a document, but a conversation. Click here for information and tools to support Advanced Care Planning in Ontario.
While the availability of support in out-patient or day program basis has been improving – slowly – in Ontario, professionals in the field have recognized the need for an integrated approach. In 2011 the Hospice Association of Ontario and the Ontario Palliative Care Association joined to create Hospice Palliative Care Ontario (HPCO) with the aim of unifying that sector’s voice to increase and strengthen palliative care for Ontarians.
Like most service organizations, this sector’s services rely heavily on dedicated staff and volunteers. 30 hours of standardized training is provided to hospice volunteers who give their time and attention to people needing their services, in a facility or at home. Still, the question remains: how do you find what is available in your community? Information on specific palliative care services across the province is available by calling HPCO at 416-979-9779 or 1-800-349-3111 at extension 28. Your local Community Care Access Centre should also be aware of community supports.
The ongoing problem is that not all areas provide the needed services. This has been acknowledged by the Ontario Government, and the HPCO is among stakeholders currently in consultation with the Ministry of Health and Long Term Care, to develop plans to alleviate that situation.
There are examples of excellence in locations throughout the province, which have developed in both stand-alone facilities and where existing institutions have converted part of the building to provide a comfortable, home-like setting. However, many more are needed.
Residential hospices, such as Carpenter House in Burlington have been initiated by individuals or groups such as service clubs which organize and raise money, build, then maintain services with a small paid staff, many volunteers, and never-ending fund-raising.
Two notable examples in Toronto within existing health care facilities are The Baycrest Hospital’s Shirley and Philip Granovsky Palliative Care unit, with 31 beds and the Palliative Care program at Providence Healthcare with 35. Both also provide short term ‘respite’ stays to give caregivers some needed time off.
In Ontario there is no charge for hospices, although in Providence House, for example, private accommodations do have a cost, unless covered by insurance. In most facilities, after 90 days the patient’s status would be transferred to long term care, and they would be charged the normal fee for that service, based on income.
The major problem which affects the entire country is the lack of an integrated national strategy – although some provinces are trying to make up for that – which means the availability of care does not come close to matching the need.
In our next issue we will discuss how Saskatchewan, New Brunswick, Prince Edward Island and Newfoundland and Labrador are trying to cope with the situation.
October 23, 2015