06 Jun 2018 Health Canada wants your input as they develop a palliative care framework
Health Canada is conducting a consultation on palliative care. This is an excellent opportunity for us to provide input which will help them develop a framework on palliative care. We encourage you to participate by sharing the value of palliative care and how it can be promoted. This is a chance to have your voice heard!
There are two ways you can participate:
- Online discussion
Health Canada has set up a discussion page where you can leave a reply for each topic. They are putting up a new topic every couple of weeks. You can leave replies on past topics and check back for later topics.
- Written submissions
You can submit comments either by email (End.of.life.care_Soins.firstname.lastname@example.org) or in the mail (see the address here). You can either share your story of palliative care, share your general thoughts, or structure is on the ten topics they provide:
- Definition of palliative care
- Advance Care Planning
- Person and Family-Centred Care
- Challenges facing people living with life-threatening illness
- Consistent access to palliative care
- Special populations (i.e. Indigenous, infants, children and youth, homeless, rural and remote communities, LGBTQ2, people living with disabilities, immigrants and refugees, and others)
- Health care provider education, training and supports
- Caregiver training and supports
- Community Engagement
As you respond to this consultation, here are a few general thoughts on palliative care and talking points. We encourage you to take these thoughts and expand on them in your own words.
The Supreme Court of Canada when striking down the complete prohibition of assisted suicide in the Carterdecision set up a false choice for the dying: suffering until death or suicide. But there is a third option that is woefully under discussed. That third option is palliative care.
For more information, watch ARPA Canada’s feature length documentary: Ending Suffering: The Palliative Alternative.
Definition of palliative care
The World Health Organization defines palliative care as “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.”
- It is antithetical to assisted suicide
- The goal is to help patients live well until death.
- It is holistic including physical, psychological, and spiritual.
- It neither hastens nor postpones death but focus on enhancing the quality of life.
- A patient can benefit whether they have many years left to live or only an hour.
- It is team based with medical professionals, the patients, and the patient’s loved ones.
- The goal is to help the patient live with dignity.
Advance Care Planning
- Palliative care should commonly be discussed between patients and physicians before a terminal diagnosis.
- Discussions should go beyond medical concerns (such as a do-not-resuscitate order) and include where the patient might live and who would be involved in their care.
Person and Family-Centred Care
- Palliative care will be unique to each patient as it is a holistic approach.
- It needs to be guided by the wishes and needs of the patient.
- It needs to take into consideration the role of the patient’s loved ones.
Challenges facing people living with life-threatening illness
- The stigma of having a life-threatening illness.
- The implication that patients who choose to live out their natural life are not dignified.
- The false assumption that human dignity is tied to autonomy, a lack of a disability, or health.
- The feeling that a patient may be a burden to those around them.
- The fear of pain without understanding how much a palliative care professional can do to alleviate that pain.
- Isolation, depression, or anxiety which a team-based holistic palliative care approach can address.
Consistent access to palliative care
- Those who have benefited from palliative care will bear witness of its benefits for the patient and the family.
- Palliative care should be available to all.
- One of the barriers for palliative care professionals has been the forced participation in medical assistance in dying. We need conscience protection for our medical care professionals.
- Even those who do not have ethical issues with MAID may struggle with the antithetical relationship between MAID and palliative care. Palliative care is about neither hastening nor postponing death. MAID hastens death.
Health care provider education, training and supports
- Health care providers need to be aware of the language around MAID and the false choice given to those with life-threatening illnesses. A patient doesn’t need to choose between a life of pain or a premature death.
- Health care providers need to be aware and able to educate their patients about palliative care an option.
- The community needs to know of the existence and availability of palliative care.
- If Canadians believe these are the only options (suffer or die prematurely), they are not giving informed consent to either. Canadians need to be made aware of the third option, palliative care.
- There are many who view palliative care as just for the final days. The narrative around palliative care needs to be claimed as one that is about living well, with dignity.
- Palliative care is about coming alongside patients, working with their family and ensuring pain management, mental health support, and care.
- Many Canadians are woefully unprepared for the death of a loved one whether it be with the logistics associated with a funeral, the financial implications, and, most importantly, the grieving process. Palliative care can play a role in preparing loved ones for the death of a patient.
- The reality is that an illness, especially a long-term illness, involves a long slow adjustment to the separation of death. Whether it’s the physical relationship, the ability to communicate, or the memory of loved ones, a long illness involves adjustments in the relationship. Palliative care professionals can assist in this journey.
- Palliative care professionals are able to provide support, sensitivity, and compassion for loved ones going through this difficult time. Even as a relationship with a loved one changes, the team involved in palliative care can learn new ways to demonstrate the love they have for each other.