The importance of Advance Care Planning

Caroline Variath is a Registered Nurse and a PhD candidate at the University of Toronto, Ontario. She views death as an inevitable part of life, and is passionate about improving end-of-life care. She believes this can be done by increasing awareness about Advance Care Planning, palliative care, and medical assistance in dying (MAID). At every opportunity, she initiates conversations with nurses and other health care workers about the importance of having end-of-life discussions with patients, and the necessity of documenting end-of-life wishes. As an undergraduate nursing professor, Caroline ensures that students understand the importance of helping patients make informed end-of-life treatment decisions, that sometimes may differ from their own values and beliefs. Her PhD studies in Nursing and Bioethics focuses on the important relationship between ethics and end of life. She aims to contribute to improving end-of-life care for those who have lost their capacity to make decisions. 

Tell us about your education background and what motivated you to become a Registered Nurse?

I’ve been a Registered Nurse for over 15 years. I always knew I wanted to be a nurse – I was drawn to the opportunity to interact with people and to make a positive change in their lives, especially in their most vulnerable state.

The profession has allowed me to practice in three different countries and in various capacities. I completed my undergraduate nursing degree in India, shortly after which I moved to Australia, where I worked for a few years before moving to Canada. I received my Master of Nursing Degree from Charles Sturt University, Australia. My profession has molded me into the person I am today, and I have met some wonderful people along the way.

Can you tell us about your PhD and the research you are doing to support it?

During my nursing career, I encountered many challenges surrounding end-of-life decision-making on behalf of those who are unable to do so themselves. I decided to enroll in the PhD program to learn more about ethical issues that surround end-of-life care, specifically for those who are unable to make their own decisions.

My research focuses on the experiences of health care providers who have cared for patients who had been assessed and approved for MAID, but then lost the capacity to consent. It also explores health care providers’ perspectives on using advanced consents for MAID.

My interest in this topic stems from my own experience with patients who had capacity-limiting conditions, as well as from my role as a nurse on a MAID team. I believe that the experiences of this population of patients are quite unique. Exploring the health care providers’ perspectives and experiences will provide some insight into how to improve the care they receive.

At the end of your PhD, what ultimate question are you hoping to answer about end of life and the health care experience?

I aim to explore and document the experiences of health care providers supporting people at their end of life who became ineligible for MAID due to changes in their decision-making capacity. In particular, the challenges they may have experienced, the strategies that they may have used or those that were in place that helped with changes in the end-of-life trajectory of these patients. The goal is to use the data to inform policies and guidelines, and to improve end-of-life experiences for patients with the loss of decision-making capacity.

Often people, including health care providers, see death as a failure. For decades, we have been on a quest to prolong life, and somehow have neglected the need to ensure a ‘good death’. I believe poor end-of-life planning is a public health issue. My overall goal, beyond the PhD, is to contribute to normalizing the concept of end-of-life planning and to change how our society perceives death. These changes will hopefully result in improved end-of-life experiences for patients, their families, as well as the health care providers.

You mentioned that part of what made you passionate about end-of-life was your personal experiences. Is there any one particular experience that stands out in your mind that influenced your decision to research and work in end-of-life care?

In my career, I’ve witnessed many deaths, and observed that a patient’s death can cause distress to family members and health care providers. While working in a critical care setting, I had an experience with the death of an elderly woman that stays with me to this day.

She was admitted to the ICU following a major emergency surgery. Her husband, who was her Substitute Decision-Maker, told me that she had early stage dementia, and that she agreed to the surgery, only because without it she would die. She agreed under the condition that if she didn’t do well after surgery, that he wouldn’t keep her alive using artificial means, and that he would not prolong her suffering.

Unfortunately, a day following the surgery, she became unstable. It became clear that she would not survive without life-supporting measures and that she wouldn’t return to her normal life with her husband at home. Later that day, during my shift, her husband approached me to request the team remove her life support. I set up a meeting with the team, and it was decided that she would be provided palliative comfort measures in place of life-saving treatments. She passed away peacefully with her husband at her bedside, holding her hand. Her husband was clearly heart broken in losing his companion of over 40 years. He told me that he took comfort in knowing he did what was best for her – what she would have wanted. At that moment, I hoped that one day I would have an end-of-life experience such as hers, where my loved ones would know what my wishes were, and they would honour those wishes.

In critical care settings, such end-of-life experiences are few and far between. Often, the wishes of patients who have lost capacity are not known, especially when patients deteriorate unexpectedly and quite quickly. The lack of such knowledge burdens family members with making end-of-life decisions on behalf of their loved ones. They experience a sense of guilt or fear of not being able to make the right decisions. Inconsistencies between what the patient would have wanted, and what the Substitute Decision-Maker or the loved ones believe would be appropriate do occur. I’ve also seen family members torn apart by disagreements about treatment decisions, and disputes about who the Substitute Decision-Maker should be.

Family members can be unaware of the legal requirements of the substitute decision-making hierarchy. Lack of knowledge about these legal requirements and their disparities with cultural values, norms and expectations of family members and loved ones can worsen the process. In such instances, patients can experience a prolonged, uncomfortable and painful death that results in moral, ethical and emotional distress for family members, as well as the healthcare providers.

Do you think that palliative care and medical assistance in dying are complimentary? Do people have to choose one or the other, or can they choose both?

In my personal experience, palliative approaches are used to minimize pain and other symptoms of patients who are awaiting MAID. I believe that we can offer the best possible end-of-life experience for patients and their loved ones when there is seamless access to palliative care, as well as MAID. It is imperative that we offer those who choose MAID the means to access the best possible quality of life through palliative care until the very end.

What should Canadians consider when they’re making their end–of–life plans?

It’s important to think about what is most valuable and meaningful to you, and what quality of life means to you. I would urge you to think about what treatments would be acceptable to you in different stages of life.

It is equally important to pick an appropriate Substitute Decision-Maker. Choose someone who understands your values and beliefs, and who will honour your wishes.

Write your wishes down by creating an Advance Care Plan and communicate them with your Substitute Decision-Maker and health care providers. One’s values and beliefs and what one considers important in life will change over time so it’s important to revisit these Advance Care Plans regularly to make changes as necessary.

Is there anything else you want to share with the community at Dying With Dignity Canada?

The following quote from Atul Gawande captures a lot of what we have discussed, and is a nice way to conclude.

“A few conclusions become clear when we understand this: our most cruel failure in how we treat the sick and the aged is the failure to recognize that they have priorities beyond merely being safe and living longer; that the chance to shape one’s story is essential to sustaining meaning in life; that we have the opportunity to refashion our institutions, our culture, and our conversations in ways that transform the possibilities for the last chapters of everyone’s lives.” — Atul Gawande, Being Mortal: Medicine and What Matters in the End. (page 243)