Advance care planning is the process of thinking about and sharing wishes for future health and personal care. The Canadian Society of Palliative Care Physicians’ Choosing Wisely list includes the recommendation “Don’t delay advance care planning conversations.” Evidence shows advance care planning improves patient and family satisfaction, reduces the likelihood of patients receiving hospital care at the end of life and the number of days spent in hospital, and increases the likelihood of receiving hospice care.
Despite these benefits, it is estimated that less than one in five Canadians has an advance care plan.
Advance care plans can include important information about preferences for place of death. “We know that 75% of Canadians want to die at home,” says Dr. Amit Arya, a palliative care physician working in the Greater Toronto Area. “However, data shows that Canada has high utilization of acute care at the end of life, which means we may not be providing care that aligns with the values or wishes of Canadians.”
The global COVID-19 pandemic has brought end-of-life conversations to the forefront. Many have seen and heard the devastating and heartbreaking stories of people dying alone in hospital settings due to no visitor policies implemented at the peak of the pandemic. These stories have further emphasized that there is a human cost to spending one’s last days of life in an acute care facility, instead of somewhere that is accessible to loved ones.
Talking about end of life can be difficult and there are many reasons why these conversations are often avoided. For family or loved ones, discussing end-of-life care may feel uncomfortable, awkward, or there is a fear of initiating the conversation. Similarly, many clinicians find it difficult to talk about wishes for death and dying with patients. Some struggle with the perception that “death is failure” or feel ill-equipped to start the conversation.
Despite these fears, end-of-life conversations matter—especially now. The uncertainty and pressures of a global pandemic are a powerful illustration that our health can change rapidly and with little warning. That’s why this is a critical time to emphasize the importance of being prepared through advance care planning.
Leading by example, in April 2020 Dr. Arya publicly shared his own reflections about what might happen to him if the worst occurred.
“A few weeks ago, I had a nightmare that I was in the ICU, choking on a breathing tube, waking up crying and searching desperately for my family,” he posted on Twitter. He went on to say that he had a conversation with his appointed substitute decision-maker (his wife) about what was important to him. In the end, they both felt reassured after knowing the plan.
The COVID-19 pandemic is a pivotal moment for clinicians and the public to reflect on the importance of having honest conversations about wishes for end-of-life care. With the possibility of a second wave of COVID-19, it has never been more important to have an advance care plan in place.
Advance care planning can be an emotional process, and the conversations may be difficult. But a plan can support loved ones in a difficult time and ensures the care we receive is reflective of our end-of-life wishes.
Dr. Amit Arya is a palliative care physician working in the Greater Toronto Area. He holds joint faculty appointments in the Division of Palliative Care at McMaster University and the University of Toronto.
Starting the Conversation: