A Framework for Palliative Care

Religious People Have Access to Morally Acceptable Care (according to their religion) and their Spiritual Communities

Protect the right to palliative care

In an overburdened health care system the prospect of the cost saving of lives ended through euthanasia can easily become a juggernaut causing a commensurate loss of palliative care services. I never want the day to come when I feel that I must end my life to avoid unconscionable suffering, but I fear that day is well on its way already.

Deep concern that MAiD has been introduced to palliative care centres, adding a dimension of stress to already stressed patients.

MAiD SERVICE IN PALLIATIVE CARE

Empower Hospices as hubs for Compassionate Communities in PC.

Patients, families, and HCPs could reach out to hospice if they want to connect with (or offer) a particular resource.

Create networks, forums or communities of practice to support healthcare providers

Empower HCPs so that they can in turn better support individuals with life-limiting disease. Encourage conversations between professionals to get them talking more about palliative care and create networks within the different professions so that HCPs know where to turn to best support their patients/clients.

Health 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)

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).

Palliative Care and Medical Assistance in Dying

With the new Medical Assistance in Dying legislation that has been enacted, it is important that people know about their options. With the legislation allowing health care providers to opt out of providing this assistance, there is a requirement for them to complete a successful referral to a practitioner that will respectfully assist the individual with this. I believe that Medical Assistance in Dying should be desensitized and incorporated into Palliative Care information for individuals.

A 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.

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.

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.

train service providers in cultural competency for LGBTQ2 individuals

military members and their family members

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.

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.

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.

Other 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.

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.

Expand and increase funding to in-home community care

Community Care Needs Better Funding

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

Create hospice hubs nationwide

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?

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.

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.

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".

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