A few weeks ago, a long-time patient of mine died. We will call her Barbara. About two weeks before her passing I received an email from her daughters asking for help in navigating care choices on behalf of their mother.

Barbara was 90 years old and hospitalized in a post-seizure coma. She had a history of renal cell carcinoma, dementia and diabetes mellitus that was controlled with metformin and diet. She lived in a long-term care facility but required little daily supportive care. The generalized seizure seemed to be unprompted and was not associated with a fall or injury. With a normal CT scan of the patient's head, the acute care team wanted to do a lumbar puncture, give VTE prophylaxis and monitor blood glucose three times a day.

Barbara's children did not know what to do. Their mother had been very clear when their father died four years earlier that she did not want to be resuscitated or have any life-prolonging interventions beyond pain management. She also wanted to die in her own bed if possible. With their mother now in hospital with little hope of recovery, the children were sure that if Barbara could speak she would not agree to any of the tests. However, they did not know how to ask the doctors to focus only on keeping their mother comfortable, and whether they could take her "home" to the long-term care facility to die in her own bed.

When Barbara's children contacted me, I understood that they knew what their mother wanted, but needed help to carry out her wishes. I was careful to confirm my understanding of their mother's desire for end-of-life care with no interventions, and I encouraged them to advocate for their mother. I also validated their rights as a family to direct her care and supported the decision to ask for Barbara to be discharged home.

Her children were able to achieve all Barbara's wishes, and in the end felt their mother had a "good death." She died a week after arriving home with her family at her side. I firmly believe the children were able to support Barbara because they knew what she wanted, and they asked for help.

As doctors we often continue on autopilot with active care because we can and it is what we do with ease; however, we should all be thinking about a palliative approach to care for our very sick and/or aging patients. What I mean by palliative approach to care is actively identifying and recognizing which patients are likely to die in the coming year from a serious and progressive illness or an age-related incident or illness. A key piece of this work is making sure an advance care plan is in place and that discussions have taken place between the patient and their family.

Our profession often finds it difficult to initiate the discussion about care goals, wishes and values with very sick or aging patients and their families. I have learned a great deal from advance care planning programs, such as Speak Up and Pallium Canada's Learning Essential Approaches to Palliative and End-of-Life Care (LEAP). Both programs provide useful education and guidance on how to engage patients to think about how they want to live until they die, and how physicians can identify and regularly check on their goals of care. There are also tools available to add to the EMR for these conversations, which I now print out for my patients to take to any ER, specialist or hospital visit.

Many family physicians have told me they are not involved in palliative care because of a lack of funding or education and the challenges of providing 24/7 call coverage. Palliative care is an important part of our Patient's Medical Home - in pillars such as patient-centredness and comprehensive and continuous care. Our role as family physicians does not end at 5 p.m. and we need to create opportunities to provide in-home coverage for our patients that will allow interprofessional community care team involvement. This type of care will look different in each of our communities but can include family physician call groups, family physician backup for CCAC palliative care teams with nurse practitioners, and shared call models with Focus Practice Colleagues.

Initiatives such as Expected Death in the Home (EDITH) allow our community palliative care nursing colleagues to pronounce death, allowing us to do death certificates in the morning hours. Standardizing this function across the province, along with allowing easy access to palliative care medications, is required. Much work is happening provincially to support palliative care in primary care.

In 2014 a Clinical Council of the Hospice Palliative Care Provincial Steering Committee was launched, co-chaired by Dr. Denise Marshall and Dr. Jeff Myers. The Council is responsible for establishing, setting and overseeing clinical standards for palliative care in Ontario and for advising on changes needed in the clinical environment so that patients and families can access programs and services. The Council comprises family physicians, nurses, palliative care physicians, social workers and nurse practitioners along with other clinicians. It has developed a suite of Essential Provincial Clinical Standards (PCSs) as a starting point. These include standards for education, health human resources, tools to improve care and building capacity in primary care.

This is an exciting development and the OCFP will explore partnerships to expand education in primary care through programs like Pallium Canada's LEAP, so that palliative care education becomes as routine for family physicians as ACLS certification.

The only guarantee in life is that we will all die, and yet we are a society that avoids talking about death. As family doctors, one of the most difficult issues we face is prognostication and medicalization of death. Waiting until we are sure someone is designated as dying may mean that our patients and their families will not have important conversations about choices for end-of-life care. We need to move to thinking about planning their needs so that individuals and families can talk about wishes, values and choices - and live as well as possible until death. Better choices that lead to better deaths are good for our patients, their families and our society.

Regards,

Dr. Cathy Faulds
OCFP President

Links and Resources

• Speak Up - Ontario Tools for HCPs
• Canadian Hospice Palliative Care Association
• Canadian Society of Palliative Care Physicians
• Pallium Canada/LEAP
• Cancer Care Ontario
• Palliative Care in Ontario - Declaration of Partnership and Commitment to Action
• Auditor General's Report on Palliative Care
• Hospice Palliative Care Ontario
• Patient's Medical Home
• Canadian Geriatrics Society Journal of CME
• Expected Death in the Home
• OMA's End of Life Care Strategy
• OMA on palliative care - physician resources
• OMA on palliative care - patient resources
• Being Mortal