A Framework for Palliative Care
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.
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Theme 1: Advance Care Planning / Definition
almost 5 years agoCLOSED: This brainstormer has concluded.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?
drhealthalmost 6 years agoClarify consent and wishes with each hospitalization
It is shocking to see how many of my colleagues do not understand simple things like "allow natural death" can be seen about the process of dying and have nothing to do with CPR preferences once someone has already died. It is shocking to see how may of my colleagues weren't aware that only a capable patient can express 'wishes' (ie an advance care plan) and that despite wishes, consent needs to be obtained with each medical encounter. In having these conversations with my colleagues, we have designed a form that both educates and helps communicate the issues regarding resuscitation and goals of care and whether or not the conversations are about wishes or informed consent and what must be included to ensure that it is informed consent. We hope to use this tool to push ACP forward in our community and to ensure we are doing our utmost to provide care consistent with patients goals.
2RNEducatoralmost 6 years agoEncouraging everyone to have discussions about death/dying, not just close to end-of-life
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.
4alliedhealthworkeralmost 6 years agoIncrease public/referrer knowledge of the roles of different interprofessional team members in palliative care to promote holistic care.
2ppcdocalmost 6 years agoshift language from 'withdrawal' to 'protection'
I think in health care we talk to much from the negative (withholding/withdrawing) and not in the frame we really intend: PROTECTING people from interventions that will not help them, and may only hurt them (and their families) at end of life. So instead of saying why you won't "give" CPR or ICU admission, try saying you would recommend PROTECTING from these things...
3alliedhealthworkeralmost 6 years agoProvide training for communication skills specific to palliative care to improve the ability to have successful ACP conversations.
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Theme 2.1: Consistent Access to Palliative Care
almost 5 years agoCLOSED: This brainstormer has concluded.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.
alliedhealthworkeralmost 6 years agoIncrease public/referrer knowledge of interprofessional team member roles in palliative care so that patients can access the right care
010000almost 6 years agoRemove requirement for a time-based prognosis as criteria for service
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.
3PCnatSTRATalmost 6 years agoDefine minimum interprofessional staffing requirements for palliative care units (acute and subacute) so that PCUs can provide the right care for the right patients.
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.
110000almost 6 years agoHave Palliative expert teams lead other specialties (Cardiology, Nephrology, Respirology) in capacity building.
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".
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Theme 2.2: Open ended
almost 5 years agoCLOSED: This brainstormer has concluded.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?PCnatSTRATalmost 6 years agoSupport PC education for all interprofessional health care providers, so that everyone can provide a basic palliative approach to care.
All health care providers should have basic knowledge on providing a palliative approach to care. Specialists and those with extra training can then provide support and consultation for complex cases and at challenging transition points along the illness trajectory.
1Ramble Downalmost 6 years agoExpand and increase funding to in-home community care
Community Care Needs Better Funding
4spikealmost 6 years agoRationalize how we spend our public health dollars
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?
0alliedhealthworkeralmost 6 years agoCreate networks of groups doing quality improvement work in palliative care to promote spread and share learning
2JDalmost 6 years agoWe need our government to support a national collaborative aimed at improving the quality and impact of palliative research.
Palliative research in canada is not growing and thriving, and lags far behind other fields. Palliative care research faces significant barriers and we would greatly benefit from some federal support to organize and catalyze this work. The secretariat was good but there are new groups forming and higher quality research is imminent.
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Theme 3: Person and Family-Centred Care, and people living with life-threatening illness
almost 5 years agoCLOSED: This brainstormer has concluded.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.
PCnatSTRATalmost 6 years agoMake available a single point of initial phone contact for patients/family to engage their on-call PC team after hours.
Health status changes after hours are especially stressful for patients and families. Ideally, the care plan and medications will be planned in advance to allow a smooth response. Not all needs and changes can be anticipated in advance, and patients and families need it to be clear who they call to get help quickly. i.e. A consistent phone number to access their PC home care nurse. The nurse could then involve the on-call physician as needed.
1alliedhealthworkeralmost 6 years agoStart the conversation early!
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...
2PCnatSTRATalmost 6 years agoSome pharmacies required to provide after-hours access for urgent PC medications.
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.
1alliedhealthworkeralmost 6 years agoStart the conversation early!
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...
1Lorialmost 6 years agoPalliative Care Canada Wide to be close to family
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.
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Theme 4: Special Populations
almost 5 years agoCLOSED: This brainstormer has concluded.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
RNEducatoralmost 6 years agoWork directly with these communities/special populations to let them identify their specific needs
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.
1alliedhealthworkeralmost 6 years agoForm strategic alliances with special interest groups that already service these populations
3GraceOscaralmost 6 years agotrain service providers in cultural competency for LGBTQ2 individuals
1unknownuseralmost 6 years agomilitary members and their family members
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Theme 5: Health care provider training and supports
almost 5 years agoCLOSED: This brainstormer has concluded.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?
I amalmost 6 years agoWe need standardized palliative care orders across the province. Assign a palliative care contact to each person with a terminal diagnosis.
5RNEducatoralmost 6 years agoHealth Care Providers practicing having difficult conversations
I agree with other ideas that would like to see Palliative/End-of-Life care as more standard in education and clinical competencies for HCPs. I would like to see that include a component of practicing having different difficult conversations that could come up while working with people facing the end of their life. Videos showing conversations are great, but I've found that the only way to increase a professionals willingness to have difficult conversations is through situations that help them practice (I'm thinking of ASIST training through LivingWorks and how they include large role playing components for participants to help them have conversations about suicide)
3KatherineAlistairalmost 6 years agoOffering educational courses during basic training at colleges and universities
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.
4Horsealmost 6 years agoA Care Directives Database which could be tied to OHIP number (much like Organ and Tissue Donation).
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.
3Taraalmost 6 years agoSystemic Change in Educational Institutions and Licencing bodies
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.
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Director General
Health Care Programs and Policy Directorate, Strategic Policy Branch, Health Canada