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Health Canada has initiated a public consultation to collect input and ideas for the purpose of developing a framework on palliative care. This consultation will run for three months from May to July, 2018. During this time we will engage Canadians on themes like: advance care planning, person and family-centred care, access issues, special populations, health care provider training and supports, caregiver needs, and community engagement. Please bookmark this page and join us regularly. We hope that you join the discussion here, and then take it to your circle of family and friends. Palliative care will impact all of us at some point in our lives, so let’s start the conversation now.
“Access to palliative care is an important issue for many Canadians and these consultations are an important step in helping to improve Canadians’ access to services. We look forward to hearing views from across the country to help us develop a framework for palliative care in Canada.”
The Honourable Ginette Petitpas Taylor
Minister of Health
Prior to participating in this consultation, please review the Privacy Notice for more information on your privacy rights.
Health Canada has initiated a public consultation to collect input and ideas for the purpose of developing a framework on palliative care. This consultation will run for three months from May to July, 2018. During this time we will engage Canadians on themes like: advance care planning, person and family-centred care, access issues, special populations, health care provider training and supports, caregiver needs, and community engagement. Please bookmark this page and join us regularly. We hope that you join the discussion here, and then take it to your circle of family and friends. Palliative care will impact all of us at some point in our lives, so let’s start the conversation now.
“Access to palliative care is an important issue for many Canadians and these consultations are an important step in helping to improve Canadians’ access to services. We look forward to hearing views from across the country to help us develop a framework for palliative care in Canada.”
The Honourable Ginette Petitpas Taylor
Minister of Health
Prior to participating in this consultation, please review the Privacy Notice for more information on your privacy rights.
Whether you are a person living with a life-threatening illness, a caregiver, or a health care provider, you have ideas to help improve delivery of palliative care. Please share your ideas!
What innovative approaches have been/can be used to communicate the importance of advance care planning to Canadians?
Nursing schools, medical schools, pharmacy, PT, OT .... EVERYONE should have some of these basic concepts built into their degree curriculum.
Death has moved away from being a natural life event to a more medicalized, less approachable topic. Campaigns like CHPCA's "Speak Up" help to spread the message that advance care planning should be started when a person is healthy and not limited to terminal illnesses or short prognoses. Reminders to speak to loved ones about wishes could come from various sources and should come from health care professionals that people have already established rapport with.
Longest retirement party ever!
Whether you are a person living with a life-threatening illness, a caregiver, or a health care provider, you have ideas to help improve delivery of palliative care. Please share your ideas!
The Economist’s Intelligence Unit ranks Canada as eleventh (falling two spots since 2010) in an international ‘Quality of Death’ index released in 2015. Sponsored by Singapore-based The Lien Foundation, the ‘Quality of Death’ index measures current hospice and palliative care environments across 80 countries in terms of the quality and availability of end-of-life care. http://www.economistinsights.com/healthcare/analysis/quality-death-index-2015/multimedia
Countries were scored out of 100 on 20 indicators across five categories:
Palliative and health care environment — the country’s general palliative and healthcare framework,
Human resources — the availability and training of medical professionals and support staff,
Affordability of care — the availability of public funds for palliative care and financial burden on patients,
Quality of care — monitoring guidelines, availability of opioids, the extent of partnership between professionals and patients in care,
Community engagement — availability of volunteers and public awareness of palliative care.
What new approaches are being taken, or should be taken, to address some of these issues in your community? For example, some provinces have successfully expanded paramedic services to provide in-home care to people receiving palliative care.
Other specialty programs need to build capacity to manage their own patients. They need strong, expert leadership guiding, educating, and supporting a new model of care for an extensive period of time to allow for a culture shift and change that is actually sustainable and the "new normal".
It is important to define and fund staffing of PCUs to allow them to provide short-stay symptom management, and potentially longer stay end-of-life care for complex cases. Acute and subacute PCUs can then provide the right care for the right patients. Having the resources to manage patient and family needs with shorter stays would help to increase access. These resources should include, but are not limited to nurses, MDs, PT, OT, SW, spiritual care / counsellor, dietician, and SLP. Once a PCU stay has addressed the acute and/or complex needs, there must be adequate resources in the community to facilitate a safe and quality discharge.
Often people living with end stage diseases that have an unpredictable disease trajectory (ie, NOT CANCER) are neglected by our programs/services. They don't seem to fit in the check box of "this person has less than 6 months to live" and are denied. We preach a philosophy of introducing the palliative approach at diagnosis but actual forms of support/services are not allowed to be accessed until the last 3-6 months of life.
Whether you are a person living with a life-threatening illness, a caregiver, or a health care provider, you have ideas to help improve delivery of palliative care. Please share your ideas!
What are some simple and effective ways to implement a palliative approach to care today?
Families living with a member who has a chronic mental or physical illness are aware that over time, their loved-one's and their own quality of life will face greater stress. As End of Life and death come closer, family needs and tensions naturally build. Acknowledging, equipping and supporting the family as the centre of coping and care, will improve the quality of life, and lessen stress on the family and on the medical system too with less emergency room visits, and greater ease through the transition of End of Life, death and bereavement. (The medical institutions are NOT the ones who will naturally reach out to support families. Medical systems first tend their own garden.) The imperative for family caregiver support has to come from the community at large, of which the medical system is a member, key partner and player. In the larger social and cultural community context- how and by who are family caregivers, and family units of caring, actually recognised and supported?
Community Care Needs Better Funding
Do we spend too much money on fancy buildings, on research, on administrative staff etc., etc., when compared with what we spend on basic health care including palliative care?
Create hospice hubs nationwide
Whether you are a person living with a life-threatening illness, a caregiver, or a health care provider, you have ideas to help improve delivery of palliative care. Please share your ideas!
What are the best ways of providing palliative care outside of regular business hours to avoid crises and help individuals to stay in their place of choice (home, long-term care, hospice)?
Some examples of this include pain and symptom management, counseling and advice, health care provider visits, 24-hour support, telemedicine and technological innovations, etc.
MD coverage after hours is essential, in addition to other resources, to ensure patients can remain in the preferred place of care as long as possible. Providing 24/7 on-call coverage is a large ask of physicians. There must be adequate support in place to incentivize it and bolster team coverage.
The availability of medically assisted dying to those who have chosen this as an option. Dignity in death should be more readily considered. Some prefer palliative, others the former.
While my situation is dealing with an elderly mother with dementia in Nova Scotia, it had me discover a serious flaw in the system regarding continuity of care. When someone is terminally ill and moves provinces to be closer to family they lose their access to palliative care (in my mother's case home care) and must re-qualify all over again (3 month wait for provincial health insurance, and then more waiting to arrange services). This is sinful. When someone is dying and both wants and needs to be close to family they should not lose access to services by simply moving provinces. Are we one country or not? The current policy certainly does not reflect Canadian Values nor a proper use of our tax dollars. There should be an interprovincial billing process to ensure continuity of care. This should not be a difficult fix. The same rules should apply for families who are attempting to provide support for the elderly who are still living in their home and are on an excessively long list for a nursing home. Moving my mother to my province of Ontario to live with me from Nova Scotia would have her lose all her current home care including VON visits and any support that was provided to the family. She would also have to re-apply for services once receiving an OHIP card (3 month wait) and re-qualify her eligibility for a nursing home and end up at the back of the line. With the volume of both ill and elderly people in the hospital system, this country needs family supporting their elderly parents and dying loved ones as best as possible. Please do not make this so difficult for us. Rectifying this issue is beneficial for both the health care system and all involved.
Be proactive to anticipate concerns and manage symptoms. Start early stages of conversations at the time of diagnosis of chronic or life-limiting illnesses, on admission to LTC...
Each region must be able to provide PC medications when urgently needed for patients in distress after hours. This need goes hand in hand with the availability of healthcare providers to assess patients after hours.
Whether you are a person living with a life-threatening illness, a caregiver, or a health care provider, you have ideas to help improve delivery of palliative care. Please share your ideas!
What are some innovative approaches to improving palliative care for special populations? (examples include people in the following groups:)
Perinatal, infants, children, adolescents and youth
Indigenous peoples
Rural and remote populations
Homeless individuals
Inmates
Immigrants and refugees
LGBTQ2SI
Persons with disabilities
Persons in long-term care
Persons with mental health and cognitive disorders
There is no better resource than people from special populations communicating their past experiences, identifying things that they appreciated and things that didn't work for them.
Whether you are a person living with a life-threatening illness, a caregiver, or a health care provider, you have ideas to help improve delivery of palliative care. Please share your ideas!
What are some innovative ways to educate and train a wide range of health care providers to ensure they have the comfort, knowledge and skills to support Canadians at end of life?
Individuals could update as their wishes change. Healthcare workers could access information quickly and bring forth to patients and/or their family to reaffirm patient's wishes at times of medical crisis. No need for families to feel they have to make difficult decisions, but only to support the individual's documented wishes.
Palliative Care needs to be a part of core curriculum in all health care fields. Palliative care, Death, End of Life Care will touch every single area of health care; thus does it not make sense that it is a core curriculum component in both the theoretical underpinnings of palliative care but also the practical application? We need to hold the education system accountable in curriculum development and delivery to educate on palliative care. We need to hold regulatory bodies accountable to ensure that health care providers have competencies in palliative care to ensure when they are licencing people to practice that there is an expectation that they have a knowledge base and skill set that meets good and basic palliative care competencies.
Canada has just gotten its feet wet when it comes to its framework on palliative care. Once it has developed a CLEAR mandate, all peoples training to be in the health field (from paramedics to pharmacists to psychologists) should be required to take a course on Canada's palliative care model during their formation. Current practitioners who disagree with end of life care should still have to take mandatory paid professional development, yet should be able to refer patients to others if they are uncomfortable with the practice. Those new to the field should not have that right.
Physicians focused in palliative care will set and improve standards in PC, and act as resources to support all HCPs involved with PC. Two-year training for palliative medicine through the Royal College is new, and there is a lack of clarity for how residents will be funded across all provinces. Funding an extra year of training for family physicians remains vital. Funding for this training should be open to those graduating from core residency, and to physicians that wish to return from practice.
Director General
Health Care Programs and Policy Directorate, Strategic Policy Branch, Health Canada