A Framework for Palliative Care

shift 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...

Provide training for communication skills specific to palliative care to improve the ability to have successful ACP conversations.

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!

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.

Start educating health care professionals in their degree programs.

Nursing schools, medical schools, pharmacy, PT, OT .... EVERYONE should have some of these basic concepts built into their degree curriculum.

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.

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

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".

Support 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.

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

Improve the supply and quality of Personal Support Workers (PSW’s)

Provide sustainable family caregiver support, training and respite

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?

Encourage the 'hospice hub' idea - all palliative healthcare providers working under one roof.

Create hospice hubs nationwide

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...

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.

Some 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.

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...

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.

military members and their family members

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

train service providers in cultural competency for LGBTQ2 individuals

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.

Ensure 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.

Offering 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.

Music therapy

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

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).