End-of-life care: what do you want it to look like?
I imagine that COVID-19 has done more to drive home the importance of end-of-life care planning than 20 years of professionals pleading with Canadians. Nothing can teach us that ‘life can change on a dime’ better than, well, life changing on a dime. Read on for how to turn what we want into an end-of-life care/advance care plan.
We know what we want
There are many decisions that need to be made at the end of life, when we are dying. Many of us already have a picture of how we would like our end of life to be. Even those who are quite healthy can likely say whether they would like to receive end of life care in the home or in hospital or in a hospice; can likely say who they would like to make decisions for them if they are unable; and some can even say whether they want to be resuscitated (CPR) if their heart or breathing stops.
People share their end of life care wishes informally at parties, at family gatherings in a discussion about what happened to Aunt Karina or cousin Aaron’s family, for example. And many people muse about this if they experience a health threat. We even imagine what we want for ourselves while we watch someone dying in a movie or television show (not the best source for what dying is actually like, by the way!)
In my experience, people are often quite quick to come up with their preferences, their wishes, in these informal settings. That tells me that it isn’t the first time they have thought about it. There is quite a gap, however, between these informal expressions and making it formal by writing up an advance care plan. Yet, an advance care plan is the best assurance that your wishes will inform your care when you are dying.
What exactly is advance care planning?
You may have heard of an advance care plan but may not be sure what it is. Advance care planning helps a person decide what their wishes are for end-of-life care. An actual plan communicates those decisions to others. Your wishes can be met if you are unable to speak or communicate for yourself. It also means others (usually family members) don’t have to make these difficult decisions during an already emotional and difficult time. And believe me, family members aren’t always in agreement about end-of-life care.
The intimacy of end-of-life conversations
The conversation/s about your end-of-life care can become intimate moments. The vulnerability and courage required can bring you closer to others.
Imagine (sorry) that your partner/spouse or your mom or dad is palliative/at end of life. Imagine that they are unable to communicate.
Consider the following questions:
- Do you know whether they would like to be cared for at home, in hospice or in hospital?
- Do you know if they would want or not want certain medical procedures? (for example, CPR, feeding tubes?)
- Do you know what they are most afraid of in terms of the physical process of dying (such as being in pain, not being able to breathe?)
- Do you know what would be meaningful for them at end of life (for example, spiritual guidance, role of family and friends, music, etc.?)
If you don’t have answers to these questions, then it is time to muster up the courage to begin this conversation. It is a brave and loving thing to do.
Five steps to create an advance care plan
- Make it personal
When you are trying to convince someone else to create an advance care plan, you can start a conversation by talking about situations that you have experienced with others and ask them how they felt about the decisions made. For example, “Remember when Joe was admitted to the hospital and had a feeding tube put in. What do you think about that?”
Another option is to use the current context of the COVID-19 pandemic. Here is an example from a doctor who opened a conversation about death with her own parents:
“Mama, Daddy, seeing a lot of people getting really sick with the coronavirus made me think of both of you. None of us knows what’s around the corner, and I want to be sure I know what you would want for yourselves when you get really sick,” I told them. “I want to be your voice so that I can make decisions for you, not for myself.”
- Discuss end-of-life palliative care options and medical procedures
There are many different medical procedures and types of equipment that might be used at the end of life such as a ventilator, kidney dialysis, a feeding tube, or CPR. Some people may want these procedures to help extend their life while others may not.
It is important to know that the person who is dying will always be given medicine and treatment to relieve unpleasant symptoms such as pain or nausea.
- Appoint a ‘Substitute Decision Maker’
A Substitute Decision Maker is someone who will make medical decisions if the person is unable to make them on their own. This is something that needs to be part of the advance care plan and who you choose needs to be carefully thought through. The person chosen should be the one who is the most capable to honour and make medical decisions on your behalf. For example, if there are siblings, there may be one who will be better suited given that this will be an emotional and stressful time.
In Canada, this person will be the Substitute Decision Maker or the Medical Proxy, Health Representative or Agent, or Power of Attorney for Personal Care depending on your province or territory. The legal requirements regarding the appointment of a Substitute Decision Maker vary across Canada. Consult the list of provincial/territorial resources.
- Write down or record wishes
Write down or make a recording (or video) talking about what you would want if you are at the end of life.
Also, document any other wishes for care at the end of life such as dying at home, receiving hospice/palliative care, having music playing, performing specific spiritual or religious rituals, and so on. You may want to use a template or workbook to document these wishes. An Advance Care Plan Template or Workbook can help document these wishes.
Consider who else should know about the details of the advance care plan. The primary doctor should have a copy, and perhaps lawyers or other financial and legal professionals. I would also suggest that all family members be aware of the details of the plan. It is a potential minefield, for example, when one or more of the daughters or sons knows and another does not. It also gives family members some time to process emotional reactions.
- Review the advance care plan document regularly
Just as life changes, so may your wishes. Talk about the end-of-life advance care plan from time to time to see if any components need to be updated or if there are any new concerns to consider. Then be sure to share these changes with the health care team or Palliative Care Team.
During each advance care plan review, it is also important to confirm that the substitute decision maker is still willing and able to perform that duty.
When to do an advance care plan?
When is the best time to create an advance care plan? When you are younger and your health is quite good. So, ahem, maybe you want to start by creating your own advance care plan and sharing it with your partner/spouse, your adult kids, your parents. Wouldn’t these be interesting conversations?
If you want to have a discussion about end-of-life wishes that specifically revolves around becoming sick with COVID-19, then you may want to consult this guide.
For more resources, including First Nations Resources, cancer planning toolkits, a glossary, and conversation starters, check out Speak Up Canada and/or The Conversation Project.
We would love to hear about your conversations.
