The Canadian Hospice Palliative Care Association is working with the federal policy staff to underline some of the hospice palliative care key issues that were determined by the CHPCA Board representatives from each province as well as some Quality End of Life Care Coalition of Canada (QELCCC) members in light of COVID-19. Please note, some of these issues might not be pertinent to every jurisdiction, but we felt it was important to summarize them in one place.
The following statements are an overview of emerging issues and recommendations for the Government. The highlighted issues in this brief are the following: funding supports, access to care, staffing and support, equipment and safety issues of front line works and access to care for vulnerable populations.
COVID-19 has certainly placed a strain on all healthcare workers including hospice palliative care providers. This strain on the hospice palliative care sector in particular is exponentially increasing due to lack of provincial/federal funding. Now more than ever, the funding challenges are increasing and we hereby suggest the following funding opportunities:
- Funding to cover staffing and safety for residents patients;
- Province-wide equitable access to palliative care; given that there is large disparity of access between rural and urban and between provinces and territories.
Next in urgency is the inclusion of the charitable sector broadly and hospices specifically, in a plan to provide financial assistance (grants not loans) to ensure the survivability of the sector. Hospices are now cancelling their major spring fundraisers. Many are considering cancelling Hike for Hospice and other large fundraisers. Small charities do not have the reserves to withstand losses of this scale. The charitable sector employs 17% of Canada’s workforce and layoffs have been widespread. The future is uncertain post COVID-19.
- Canadians still need to access hospice palliative care resources, care and support during the pandemic. Approximately 265,000 Canadians will die this year without and before COVID-19.
- While MAiD laws have been expanded, there continues to be a need for quality and accessible hospice palliative care for those who seek it. Access across all settings is variable and not always funded. Hospice residences often have to raise 50% of their operating costs from charity and with so many Canadians experiencing financial instability this is extremely worrisome.
- Palliative care resources are sparse as it is and as a result of COVID-19, there would be a further strain on these resources and reduced access with a potential impact on people with cancer and palliative care needs.
- People with cancer receiving palliative care in a hospital would express concerns over potential risk of COVID-19 infection in a hospital. Thus, they want to be discharged which leads to patients asking about access to support and medications.
- The need to discuss Advance Care Planning (ACP) with family and friends prior to end of life care is an emerging issue for all Canadians at this time. Advance Care Planning is about how Canadians want to live their life not necessarily about one’s death.
Staffing and Support Issues
We need to protect all healthcare workers across the country at a time when reassignment of human resources to meet emergent needs of Canadians is expected to occur due to COVID-19. CNA has a petition currently requesting protection for workers. A similar approach uniting with collaborative messaging of healthcare professional groups & QELCCC members to protect health workers could have a great positive impact. We also need to ensure there are supports for agencies that provide grief and bereavement services to support family members and loved ones who may have difficulty grieving the death of someone from COVID-19. Ensure that the psycho-social aspects of hospice palliative care are well supported. This could include the following:
- Family support – individuals who aren’t able to visit their loved ones in hospital or long term care facilities. They are feeling overwhelming grief;
- Support for individuals wanting to fill out advance care directives;
- Rites and rituals around funerals, grief at not being able to attend.
Families are struggling to say goodbye to their loved ones due to hospital policy restrictions, which leads to situations of complex grief. Once someone has been assessed as ‘imminently dying,’ there are exceptions for families to see their loved ones. Although, this definition is not exact and may vary depending on the institution. This highlights some challenges with consistency, availability and interpretation. For example, CCS is seeing an increase in calls to their helpline about anxiety and stress during this trying time.
Ensure the availability of both public and professional education. COVID-19 pandemic emphasized the importance of Advance Care Planning (ACP), and the need to discuss healthcare wishes with family and healthcare professionals. The overall concept of ACP could be promoted to the general population but it is also important to illustrate why this is important in the context of COVID-19. Efforts to promote ACP should be supported as well as the development of education and support around COVID-19. Information regarding hospice palliative care should also be widely distributed and developed. Information for patients and families experiencing a life limiting illness in the context of COVID-19 should also be developed.
Health care providers are urging people with cancer to make a plan and discuss it with their family and loved ones. These conversations are now becoming more important than ever. It is the start of an important on-going conversation for cancer patients. The key difference now is that their families are no longer at their bedside due to restrictions on visitations in hospitals and hospice care facilities. On a more positive note, health care providers are working with families to remotely have these conversations with patients, including using Skype, FaceTime, etc. However these technologies may be challenging to use for seniors who may be unfamiliar.
PPE, Equipment and Safety Issues
Recently, the Minister of Health advised that the Federal Government would control distribution of PPE to the provinces. We hereby emphasize the urgency of including residential hospices on the priority list for personal protective equipment distribution. We need to ensure the availability of PPE e.g. masks, gowns and gloves for staff.
- Need to support adequate staffing levels throughout the process (overtime will be required) is essential.
- Following protocols could ensure the safety of hospice staff; however, there are rising concerns about the safety of the vulnerable frail patients/residents. Many palliative care patients face difficult circumstances as well as COVID-19 patients.
- Non-evasive respirators have been taken away from some patients with chronic diseases at home to supply hospitals. These patients now might end up in hospitals.
Ensuring options are available for Canada’s vulnerable population is crucial. Respecting the dignity of the human person and supporting a choice for them to use hospice palliative care and end of life care is essential to a healthy society.
Article by Sharon Baxter, Executive Director, Canadian Hospice Palliative Care Association (CHPCA) with feedback from the CHPCA Board of Directors and with feedback from Helena Sonea, Canadian Cancer Society, chair of the Quality End of Life Care Coalition of Canada Advocacy Committee; on April 6th, 2020.
*For more information, please contact Sharon Baxter, Executive Director, Canadian Hospice Palliative Care Association (CHPCA) at Sbaxter@chpca.net
About the Canadian Hospice Palliative Care Association
The Canadian Hospice Palliative Care Association – the national voice for hospice palliative care in Canada – is dedicated to the pursuit of excellence in care for persons approaching death so that the burdens of suffering, loneliness and grief are lessened. The CHPCA operates in close partnership with provincial hospice palliative care organizations and other national organizations and continues to work to ensure “that all Canadians have access to quality hospice palliative care.
www.CHPCA.ca | firstname.lastname@example.org