‘The Talk’ and Advance Care Planning
Personal Stories | April 14, 2023 | Bonita Thompson
Who hasn’t dreaded “The Talk” in their life – whether you are giving or receiving the sex talk as a parent or adolescent, it is seldom a comfortable experience. But it is necessary and should not be avoided.
And of course, there is another “Talk” which is equally uncomfortable to many – the talk about end-of-life expectations.
This talk among family members has always been important – to explain to family why you want or do not want certain treatments if you are unable to speak for yourself or to prepare your family for your death.
But today in 2023 in Canada, there is another reason to have that end-of-life talk long before that inevitable event is in front of us – access to medical assistance in dying (MAID).
My father, then 89, passed away in 2013. An urgent and confused call from him at his residence led to his admission to emergency with a diagnosis of a broken hip resulting from a heart attack, likely resulting from an undiagnosed case of pneumonia. But this diagnosis I did not know until the next morning.
I left him in safe hands overnight, but returning the next morning I was immediately taken aside by a physician and told that I needed to make a decision within the hour as to whether he should be intubated or not. I was told that his oxygen levels were very low and he needed that intervention to survive and to permit possible hip surgery. I was also told he was unlikely to have a good outcome from surgery – in any event – due to his current circumstances. If I decided not to authorize intubation, my dad would be kept comfortable, and his pneumonia would continue to be treated.
I was in shock. What to do? I was the oldest of five and my siblings were not nearby.
But I remembered a conversation we had a year earlier. My father was reviewing his will and one of the provisions said that he did not want any extraordinary treatment at the end of his life. I asked him if those were still his wishes. He assured me that they were.
Armed with that memory, I was able to contact a couple of my siblings, shared my recollection, and recommended that we not authorize extraordinary measures. Sadly, we all agreed that was best. Our father died early the next morning. The attending nurse said she had checked on him not long before and he was sleeping peacefully.
Losing a parent is very sad and the road of bereavement is full of emotional potholes. But even as I grieved, I was absolutely confident that we had made a decision that he would have made if he had been able.
So, it was fortunate that my dad and I had rather unexpectedly had “The Talk”.
With that in mind, I decided that my children would never have any doubt about what I wanted in similar circumstances. I prepared a very explicit Advance Directive naming my two adult children to be my representatives, specifying different types of treatments and the circumstances when they should or should not be used. And then I had a conversation with both of them – giving them a copy of the document. When the pandemic hit, I told them that if I became very ill with COVID, I did not want to be intubated or given extraordinary measures. It was a very difficult discussion for one of my children in particular as the pandemic was raging around us, but in the end, both agreed that they would do as I asked should those circumstances arise.
Not everyone will have it as easy as I had in having “The Talk.” Some people are estranged from close family members. Some have no family. Some are not ready to hear. Some are unable to share what they want. Some are in a culture where the subject is taboo. So many different situations to be navigated but, in my view, navigate them we must, as best we can. And of course, the availability of MAID since 2016 has perhaps made “The Talk” even more important and complex.
Regardless of the situation, I feel fairly confident in saying that without that discussion taking place with loved ones or without you recording your wishes in writing or naming a person whom you trust to carry out your wishes, there will be pain – some of which could be avoided.
I have thought a lot about this subject over the nearly six years since my husband Don accessed medical assistance in dying in August of 2018. And I have spoken to many people who have been thinking about MAID in their personal context or as a result of discussions with others. I have been struck by media news of the pain suffered by family members who are railing against the medical system for providing MAID to a loved one. Something that happened unexpectedly and without their prior knowledge.
Is there any way we can avoid or at least mitigate this kind of suffering? Here are some practical suggestions for initiating “The Talk” with important people in your life who have the capacity to understand:
- When making or revising a will – use this occasion as an opportunity to discuss with your children elements of your will and use it as an entry into a discussion about your end-of-life wishes. Or use this occasion (as a child) to say you have been thinking about these issues and to ask your parent if there is anything you need to know about what they want at the end of their lives.
- When making an Advance Directive or Representation Agreement – let your medical team and Representatives know exactly what you want and, if you are not choosing a close family member to act in this capacity, consider discussing that with them and telling them why.
- When going on a trip, give your children the itinerary and use that as an opportunity to tell them what you want at end of life should you get seriously ill or are in a serious accident when you are away (oh, and by the way, give them a copy of your travel insurance policy should you need their help to obtain assistance). And if you are the child, again use this trip to have this discussion with your parents.
- When you are thinking about MAID and whether it is something you might want in the future, use a media article to raise the subject with your loved ones.
- If you are aware of a friend or relative who accessed MAID, discuss it with your loved ones. Share your feelings and seek out theirs.
- When you are actively considering requesting medical assistance in dying, perhaps you can start dropping a few crumbs of information to let your loved ones know what you are thinking about. Share articles and news media reports. Refer them to Dying With Dignity Canada’s website for information. The crumbs can also be the developing facts and circumstances in your prognosis or available treatment that are leading you to consider MAID.
In essence, my unsolicited advice is to pave the way long before a decision about end-of-life issues including access to MAID is imminent –drop hints about your thinking; share interesting articles and personal stories; build some rapport and understanding of your thoughts and wishes; address any unspoken concerns – avoid if you can having a loved one find out after the fact that you decided to access MAID without letting them know and without giving them the opportunity to prepare for your death and to say goodbye.