WHEREAS not-for-profit community hospice associations are increasingly providing post-curative end of life care in rural areas; and

WHEREAS Alberta Health Services (AHS) has no formal policies in place for the placement of patients in community hospice associations or the use of AHS resources within community hospice associations and facilities;

THEREFORE, BE IT RESOLVED that the Rural Municipalities of Alberta request the Government of Alberta develop standardized procedures and policies to interface community hospice associations with Alberta Health Services.

Currently, there are 88 residential hospices in Canada (as of August 2017). Hospices provide end-of-life services to patients suffering from all illnesses, not just cancer. Hospices have residents of a variety of ages, not just the elderly, and can include children, although there are also pediatric hospices who care only for children and adolescents with life-limiting or terminal illnesses.

In Canada, the terms “palliative care” and “hospice care” are used to refer to the same thing – end of life, comfort care. However, some people use hospice care to describe care that is offered in the community rather than in hospitals or other settings of care. In the U.S., they are viewed differently: both palliative care and hospice care provide comfort, but palliative care can begin at diagnosis, and take place at the same time as treatment. Hospice care begins after treatment of the disease is stopped and when it is clear that the person is not going to survive the illness.

A residential hospice differs from palliative care programs in other settings. Patients come to live at the hospice where their full end-of-life needs are met including pain and symptom management, nutrition, additional therapeutic services, and support for family or loved ones both during the illness and after death.

There is no cost to a person living in a residential hospice.

Support services are provided to the family members of patients in a hospice both during the illness, and after their death.

Recently, several Alberta communities have set up hospice societies. Many of these community-based organizations have struggled to navigate the Alberta Health Services (AHS) world and have encountered significant red tape.

The greatest struggle societies, patients, and families are facing is having AHS make a decision to provide home care support. While many have struggled and been able to get through the sea of red tape, they have been very frustrated with the delays. This delay creates uncertainty within the organizations and their fundraising efforts.

Without clear rules for home care or a blanket AHS policy to follow many prospective groups are hesitant to deal with this issue. This does not mean this issue will go away. However, if AHS had a clear policy to follow this would allow many more communities in Alberta to set up hospice care.

There have been a number of advocacy efforts to AHS as well as to the Government of Alberta. These have been mostly by individuals or groups, and in some cases by municipalities.

In 2014, AHS published a review of palliative and end of life services that identified gaps and barriers to service delivery across the province. Though the report recommended various strategic initiatives, little has changed since the report’s publication. Included in the report is the following summary of the current state, which remains accurate today:

• there is a mixture of service delivery models across Alberta;
• access to services and programs varies between zones, regions and settings of care; it is not always co-ordinated, equitable or available;
• the level of knowledge and skill varies among providers across sectors, and within the same sector, depending on the location and despite role or discipline;
• there is inconsistent use of appropriate assessment tools, standardized techniques, policy and evaluation;
• there is inconsistent data collection and no sharing or merging of data with other sectors;
• there are inconsistent practices/programming around palliative and end of life care (PEOLC) between Primary Care Networks and they are not consistently aware of policy changes and integration efforts with their primary and secondary care partners and community-based supports;
• there is inconsistent communication across the zones between levels of health care and between settings leading to fragmentation/duplication of services;
• the lack of co-ordinated resources, training, workforce, standards of practice, programs in rural regions, as well as service options within Calgary and Edmonton zones further challenges pediatric palliative care;
• the lack of a provincial standardized PEOLC framework allows for incongruence in decision-making around support for both pediatric and adult PEOLC programs and services.

(Alberta Health Services, 2014)

Recently, the community of Stettler came together and formed a hospice society. This grassroots group raised over $200,000 in a less than a year and half. They started a board and secured the support and involvement of all doctors in the community. They have set up a location to provide the service. One missing piece to the puzzle is collaborating with home care providers to offer in-hospice nursing service. Currently, this service would be provided if the patient was to stay at home but not if the patient relocated to a hospice. This practice seems to vary in communities across the province and is dependent on the level of home care in a given community.

Home care costs should be covered by AHS and location of care should not be a factor. The result of the added cost to these groups is an added pressure to solicit donations.

While some studies suggest there can be substantial cost savings to the health care budget through hospice care, this issue is more about quality of care and redistribution of already exiting budget money.

Hospice palliative care services can reduce the costs of dying and improve patient care according to evidence from the US, the UK, and Canada. Hospice care can also reduce hospital admissions, length of hospital stays, re-admissions, visits to intensive care units, and inappropriate diagnostics or interventions. Hospice care also improves patient care; it is associated with improved patient and caregiver satisfaction, better symptom control and greater likelihood of the person dying in the setting he or she prefers.

Most research on the economics of hospice care has focused on hospital-based programs. Despite some methodological limitations, it appears that, compared to usual acute care, hospital-based hospice care may save the health care system approximately $7,000 to $8,000 per patient. According to an Ontario study, shifting 10% of patients who are nearing end of life from acute to hospice care could save the health care system $9 million. There is also evidence of the economic benefits of home-based hospice care. One systematic review and several small studies of home-based hospice care services showed cost savings ranging from 33% to 68% of the cost of usual home care. in Spain, a combination of hospital- and home-based hospice care services has been credited with saving the country’s health care system several million euros each year.

Unfortunately, few studies published to date have measured informal caregiving or out-of-pocket costs; those that do suggest that, compared to usual care, hospice care may have only limited impact on families’ costs. This can be off-set by hospice societies fundraising at a local level, supporting funding models will supply care to the family at no cost. (Canadian Hospice Palliative Care Association, 2012).

References

Alberta Health Services. (2014). Palliative and End of Life Care: Provincial Framework. Retrieved from https://www.albertahealthservices.ca/assets/info/seniors/if-sen-provincial-palliative-end-of-life-care-framework.pdf

Canadian Hospice Palliative Care Association. (2012). Cost-Effectiveness of Palliative Care: A Review of the Literature. Retrieved from The Way Forward Initiative: An Integrated Palliative Approach to Care: http://www.hpcintegration.ca/media/36290/TWF-Economics-report-Eng-final-webmar7.pdf

RMA has no active resolutions directly related to this issue.

Alberta Health

Alberta Health continues to engage with AHS to determine rural and palliative and end-of-life care (PEOlC) needs, and there are plans to obtain insights related to service gaps from local hospice societies. Alberta Health also works with the Alberta Hospice Palliative Care Association, which advocates for the needs of community hospices, to understand current and future initiatives and challenges.

The Government of Alberta has committed to investing $20 million over four ears to improving PEOlC by shifting from hospital to community based care; raising awareness of how and when to access PEOlC; developing effective caregiver supports; and establishing education, training, and standards for health professionals.

Following the release of AHS’s 2014 Palliative Provincial Framework, efforts were made at expanding palliative care across Alberta, including the delivery of a Rural Palliative In-Home Funding Initiative aimed at increasing palliative home care services in rural areas.

Alberta Community and Social Services

Unfortunately, Alberta Community and Social Services does not have anything to provide on policies supporting Community Hospice Associations.

RMA is pleased to learn that the Government of Alberta (GOA) is investing $20 million over four years to improve palliative care in rural communities. Between 2020 and 2021, a total of $8.7M was allocated to five projects and one pharmacy initiative that will enhance public awareness, community palliative care supports and caregiver supports as well as an increased uptake of advance care planning and develop competency-based education for health care providers. In 2020 and 2021, key stakeholders were engaged to determine how the remaining funding should be spent. The engagement report determined four recommendations including earlier access to palliative care, education and training, community supports and services and continue research and innovation. The Government of Alberta has recognized the need to assess existing hospice funding models and to expand community-based palliative and end of life care services to address the increased demand in hospice capacity, and continue to work with AHS and community partners to do so. However, as a policy with clear rules outlining how AHS works with hospice and home care organizations has not yet been developed, this resolution is assigned the status of Accepted in Principle.