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
about 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?
drhealthabout 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.
2alliedhealthworkeralmost 6 years agoIncrease public/referrer knowledge of the roles of different interprofessional team members in palliative care to promote holistic care.
2RNEducatorabout 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 agoProvide training for communication skills specific to palliative care to improve the ability to have successful ACP conversations.
2ppcdocabout 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...
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Theme 2.1: Consistent Access to Palliative Care
about 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.
10000almost 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.
3alliedhealthworkeralmost 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 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".
2PCnatSTRATalmost 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.
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Theme 2.2: Open ended
about 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?applebee1about 6 years agoEncourage the 'hospice hub' idea - all palliative healthcare providers working under one roof.
Create hospice hubs nationwide
1spikeabout 6 years agoImprove the supply and quality of Personal Support Workers (PSW’s)
2spikeabout 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?
0JDalmost 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.
2applebee1about 6 years agoAll residential hospices to help patients who are ill but not dying i.e. when they require stabilization of pain or symptoms or respite.
Expand Hospice Role
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Theme 3: Person and Family-Centred Care, and people living with life-threatening illness
about 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.
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.
2Consilience51almost 6 years agoOther options to be considered other than palliative
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.
0PCnatSTRATalmost 6 years agoIncentivize family and palliative care physicians to maintain 24/7 PC on-call groups.
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.
1PCnatSTRATalmost 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.
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Theme 4: Special Populations
about 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
GraceOscaralmost 6 years agotrain service providers in cultural competency for LGBTQ2 individuals
1RNEducatoralmost 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
3unknownuseralmost 6 years agomilitary members and their family members
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Theme 5: Health care provider training and supports
about 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?
KatherineAlistairalmost 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.
4alliedhealthworkeralmost 6 years agoStandardize palliative care competencies
Standard framework to guide education across professions. This could (and should!) be incorporated into the standard training programs for all health professionals, so that all providers have at least a basic entry-to-practice understanding (so that even if they don't feel comfortable providing direct care themselves, they can recognize when and how to refer to a skilled palliative care team).
9Taraalmost 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.
8PCnatSTRATalmost 6 years agoEnsure that provinces are funding enhanced training in PC for both family physicians and specialists.
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.
0catsofthefuturealmost 6 years agoProvide access to Music, Art, Dance and/or Drama Therapists to BOTH patients AND STAFF to promote ongoing self-care and personal development
The creative arts can boost morale, reduce burnout and facilitate new learning.
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Director General
Health Care Programs and Policy Directorate, Strategic Policy Branch, Health Canada