When reading through the Advance Care Planning Workbook on the Speak up website, I wish I could have said this was my first exposure to such a document. However, back in 2017, when my father was terminally ill, I was presented with his—it was a do not resuscitate, better known as a DNR in the healthcare field. It was his wish to donate his remains to the Medical Sciences Department at Queens University for research.

–  Jimmy Stewart

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If this is your first time hearing about an Advance Care Directive, please take the time to read through the experience I shared with my Spouse while discussing this process.

We used the template available from makingmywishesknown.ca

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PART 1

What were my emotions while reading this form for the first time?

While reading through the steps to complete this form, I found myself reflecting on what true values are essential to me and what makes my life meaningful. As a father with four children, my family is high on my list. My emotions varied on a spectrum from sorrow to motivation. Am I thinking about end-of-life care while in the prime of my life?

However, I find it motivating to have a plan–maybe that’s just the type of person I am.

I have grown as an individual over a 10-year military career in Canadian Special Forces with multiple combat deployments. I then made the switch to primary care paramedic as an Air Force Search & Rescue Technician for the last 5-years. I guess dangerous situations and the morbid realities of death have surrounded me this entire time — although, this was not something I actively thought about.

How did my Spouse and I react to the form? What were the discussions like? questions?

Discussing the form with my spouse was a reasonably easy task–she’s an emergency room registered nurse–and advance directives are a daily occurrence for her. Given our backgrounds as healthcare professionals, we discussed interventions in detail,  our current states of health, and what our wishes are–while keeping neutral feelings of emotion towards each other. There were no over-reactions or surprises to our desires as we are both young, healthy adults.

There were no religious concerns or reasons to deny any life-saving interventions, and we were both familiar with the process, so questions were limited in that regard. This document led to some conversation on life goals and who we want as substitute decision-makers (SDM) should arise. How long should we proceed with end-of-life care? What if there’s a chance of recovery but being severely disabled? These questions all went full circle back to how can we still care for our children based upon on health.

How were our responses? Was this a typical end-of-life discussion?

Valuable conversation was gleaned from both my spouse and myself on an intellectual and spiritual level of how we were to act on each other’s behalf; mutual respect was offered as a response as questions were more prompting of additional discussion versus questioning our decisions or beliefs. We both validated that our wills were current and included all of our assets, made sure our life insurance policies covered what it needed to, and a trust-fund was setup on behalf of the children should something happen to us.

I do not feel we had a standard end-of-life discussion that would occur between all individuals. While the goals of the conversation may be the same, I believe the depth of clinical knowledge of procedures allowed us to make informed decisions that might not be offered to those outside of the medical world.

 

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PART 2

What were the benefits and limitations of this template? Was it understandable?

As I read through the website with my spouse, we both agreed that it included terminology that was easy to understand from both a health and legal perspective. The material was presented logically, and the hierarchy of SDMs was evident in the table provided. We both agreed that the informed consent and capacity information was a bit vague and that a link to the Health Care Consent Act would have been valuable. As we learned in the module, informed consent elements are: a person must be capable, informed of benefits/harms, and the decision must be voluntary. This information may have benefited from an expanded explanation.

When it comes to completing the “Share your Wishes” section, I felt this was the most underrepresented section on the form. There are no examples or links to common end-of-life medical procedures. The average person might know what Cardiopulmonary resuscitation (CPR) is, but most do not understand intubation/ventilation, feeding tubes, suctioning, and other therapeutic interventions from my experience. These terms and procedures are discussed in the hospital between patient and physician when appropriate (terminal or palliative care, or older patients with comorbidities); however, the longer you wait, the less likely capacity will exist for these decisions to be made by the individual. This highlights an issue to the element of “a person must be informed” when making such decisions.

Would this form work for everyone in all situations? Does is promote free expression of preferences?

This form provides a great starting point for people that are familiar with advance care directives. It may not be the best resource for those with no exposure or previous knowledge. What it does excellently is providing a starting point for opening a conversation about the topic. It provides insight on how to bring up the conversation, which can promote further discussion.

The framework of the form promotes free expression. However, it is semi-structured, but it provides ample opportunity to gather your thoughts, reflect on your values, concerns, and the meaningfulness of your life. The form culminates in a way to openly express your wishes at the end of the form. Overall, it is a great starting point that will lead to discussion and further research of what your advance care directive should cover.

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“When you work to improve the lives of others, your life improves automatically”

References

1. Health Care Consent Act. (2014). Ontario.Ca. https://www.ontario.ca/laws/view

2. Speak Up. (2021). Advance Care Planning Workbook – Ontario Edition | Speak Up Ontario. https://www.makingmywishesknown.ca/

3. Queens University. (2021). BMED/LISC 373 – Health Ethics, Law, and Policy – Modules 1 & 2.