5 things to remember when planning for end of life

In celebration of National Advance Care Planning Day on April 16, Dying With Dignity Canada board member Leigh Naturkach shares her top five things to consider when planning for end of life.

April may be Advance Care Planning month, but it’s not the only time to talk about end-of-life wishes. It is simply a reminder. We plan as best we can for life, and death deserves no less. No matter how hard it might be to think about death, it is an inevitable part of life. It’s also important to remember death is not just a medical event — it is a life event. To me, Advance Care Planning goes beyond the medical directive.

One year for Christmas, I gave my loved ones copies of my Advance Care Plan. Wrapped in cozy pyjamas! It may not have been the most conventional gift, but we can think about Advance Care Plans as a gift — for ourselves and for our loved ones. This gift helps us express what we want, and helps our loved ones understand what we want and their roles in honouring those wishes. This gift can support us and our loved ones in having to make difficult decisions at stressful times. We can’t fully prepare for what life (and death) may bring, but this process can help us place our guide posts for what may come. We may not have all the answers — those may change over time — but the important part is to begin, complete, and revisit, as necessary.

Here are my top five tips to think about in end-of-life planning:

1. What matters most

Approach this process from a place of positivity and contemplating your values. What gives you joy? What aspects of your life make up your sense of self? What activities, things, relationships are most meaningful? Is religion, spirituality, or ritual important? How do you feel about dignity and privacy — what do those look like to you? What role does nature play in your life? What does quality of life look like? What does it not look like? The good news is there are no wrong answers, just YOURS. Reflecting on what matters most will fuel this process and help our loved ones better understand us, even if we think they already do.

2. Remember your rights

We have rights as a patient. Not everyone around us, including experts, care providers, and loved ones, will be comfortable with our end-of-life conversations, options, and choices, which can dictate our pathway forward. It’s important to know our right to information and choice, including the legal right to medical assistance in dying.

3. Who will speak for you?

It is hugely important to identify your preferred legal designate — the person who will make decisions for you in the event you are incapable. (The title of this legal designate varies from province to province, but may be known as a Substitute Decision-Maker, proxy, power of attorney, etc.) The person you choose should best understand and support your wishes. Sometimes it’s not the most obvious person or person you feel closest to, and that’s ok! Identifying and confirming that person now will help ensure the right person is making decisions on your behalf. There are scenarios where your written wishes may not be followed, so you or your legal designate will need to be able to direct.

You might also consider naming a secondary decision-maker as a backup. If things change, or someone is incapable or traveling, a secondary or co-decision-maker is helpful. If you decide to designate co-decision-makers, you will need to establish if they can make decisions separately on your behalf or if they must decide together.

If you decide not to identify a legal designate, or you have yet to do so, it’s worth knowing that there is a legal hierarchy of Substitute Decision-Makers that will make decisions on your behalf.

4. Advance Care Plan

As Connie Jorsvik, former RN, independent healthcare navigator and patient advocate, expresses the whole plan involves:

• Health decisions (DNR orders, Advance Directive, Power of Attorney for Personal and Health);
• Personal care (hospital, private home care, palliative and hospice care);and separately,
• Legal and financial (Will, Power of Attorney for Financial)

Comprehensive Advance Care Planning Kits can be found on DWDC’s website, by province, and at Advance Care Planning in Canada. Some documents do not need to be legalized but need two witnesses (like an Advance Directive). Next to communicating your wishes to your legal designate, it’s important to understand the requirements of each document and complete them accordingly. In order to help ensure your wishes are followed where possible, do the five Ds:

• Discuss with loved ones
• Decide what you want
• Document your wishes
• Disseminate documents to loved ones and care providers
• Display wishes in an easily accessible location (like on a fridge)

5. Spiritual administration

Some end-of-life plans focus on only medical wishes. Your spiritual, emotional, and social needs are just as important — at end of life, and beyond death. If we don’t address these needs, we may still suffer. Some work, like legacy work, can begin now! You may consider documenting wishes for:

• Personal care: What is important to you? Would you like massage? Do you have favourite music, or a song you absolutely can’t stand? Is having a lot or a few people around important? These things can show loved ones how to care for us.
• Legacy work: Would you like to prepare letters, notes, or special gifts to deliver or leave to loved ones? Are there conversations to be had? Are there special in-life or post-death activities that will be important to be carried out?
• Post-death arrangements: If a green burial, traditional religious ceremony, home funeral, or cremation is important to you, make that known. If you want to have an alternative ceremony or celebration, with dancing, humour, a favourite food (like perogies!), make that known. This is your last chance to do exactly what you want — embrace it.

Take the time to go through this process and decide what aspects work best for you, and what else you might want to consider. Treat yourself to something you enjoy when you’ve completed each of your chosen parts, like a favourite tea, chocolate, or music — this is a small gift for yourself, for the invaluable gift you are giving others.

Leigh Naturkach is a Dying With Dignity Canada board member and the Director, Advancement for Women’s College Hospital Foundation. She is a graduate of the Institute of Traditional Medicine’s Contemplative End of Life Care Program (2017), and has completed a certificate in Centennial College’s Thanatology studies program.