A Framework for Palliative Care

Clarify 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.

Increase public/referrer knowledge of the roles of different interprofessional team members in palliative care to promote holistic care.

Increase education to all healthcare providers from the interprofessional team to build capacity for quality palliative care

What if we as Canadians all had health coverage and by age 65, we also all had an Anvanced Care Plan?

Longest retirement party ever!

Require each province's MOH to have a fee code for physicians to bill for annual ACP conversations.

Define 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.

Increase public/referrer knowledge of interprofessional team member roles in palliative care so that patients can access the right care

Remove 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.

Have 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".

All 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

Rationalize 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?

Create networks of groups doing quality improvement work in palliative care to promote spread and share learning

We 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.

Expand and increase funding to in-home community care

Community Care Needs Better Funding

Palliative 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.

Make 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.

Start 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...

Start 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...

Incentivize 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.

train service providers in cultural competency for LGBTQ2 individuals

military members and their family members

Form strategic alliances with special interest groups that already service these populations

Work 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.

Palliative Care Strategy for Canada and then a collaborative effort

There needs to be an overarching Palliative Care Strategy for Canada and then a collaborative effort -- provincial healthcare policymakers, policy influencers, Not for profits, NGO's, researchers, patient's and their family, other stakeholders from across Canada need to work together on developing best practices/ competencies. assessing if best practices/competencies improve patient palliative care navigation, duplication, family/ caregiver support.

Music therapy

A necessary component to transition from life, for bereavement, for memorials, for family support, for staff health

Provide 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.

Systemic 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.

Standardize 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).