Navigating Family Conversations Around Mortality
Conversations around mortality are rare. Usually, the person aging wants to avoid it, and families are more than willing to oblige, given how difficult they are to have. Because of this, end-of-life care is often not handled in a way that most would prefer. That is one of the reasons I stress the importance of writing out a living will or Medical Directive as part of someone’s comprehensive estate plan. However, many more nuanced conversations need to be had that can’t be covered by an estate plan.
I recently finished a book, Being Mortal, by Atul Gawande – where he shares from his perspective as a doctor how families navigated real-life scenarios, both the good and the bad.
Here are my key takeaways -
We hate to talk about dying and the consequences of that are real. We have medical institutions that try to free up hospital beds and remove the burden of care from family members. But the result is that our family members receiving that care are rarely asked what living a life really means to them given the circumstances.
Duration of life is considered more than quality of life. Modern medicine has focused on prolonging life at all costs. Not only is care in the last few months of life the most expensive, but it also reduces independence and overall rates of happiness.
There will always be a medical solution to try. That doesn't mean every medical solution should be tried. We often imagine that doctors will tell us there is nothing more they can do. However, that is rarely the case. You have to be your own advocate and consider the trade-off between what you have to gain and what you have to lose.
Atul described a young 32-year-old mother diagnosed with cancer. Early on, she did chemotherapy for a few months which they expected would prolong her life by up to 4-5 years. That was a tradeoff worth taking. However, as the cancer progressed and she reached the end of solutions, doctors suggested a last-ditch drug therapy. The drug would keep her in the hospital for a month, potentially extending her life by up to a year, but would also very likely lead to continued hospital visits. She decided that was not how she wanted her life to end, in and out of the hospital. She went home on hospice care and lived comfortably with her family until the very end.
As we age, all we want is time with the people we care about. A study Atul referenced found that how we want to spend our time was linked directly to how much time we perceive ourselves to have left. When you are young and healthy, you focus on gaining skills and creating new relationships. As you age, the emphasis shifts to simple everyday pleasures and spending time with people you already know deeply. Unfortunately, modern medicine makes quality time nearly impossible toward the end of someone’s life.
End-of-life care is often a sacrificial decision. When dying patients were asked why they continued with aggressive, painful treatments, that had a very low likelihood of meaningfully extending life, they most often responded that they thought that’s what their family wanted. In reality, both the family and the patient likely realize the end is nearing, but because of a lack of communication, the time spent near the end is not nearly as meaningful.
Children of aging parents value safety over everything. Most decisions made for the elderly are made through the lens of “What is most safe for them?” This might seem to be caring but the result can be a very unpleasant living environment for them. Consider an aging parent who most values their daily chats with their neighbor but is abruptly moved from their home after their first fall. I’m not suggesting another living situation shouldn’t be considered for their safety, but the cost of that move (the loss of social connection) should be weighed as well.
Society puts pressure on maintaining your independence. For most of human history, people who survived to old age were cared for in a multigenerational home until they died. However, as we have grown wealthier, we have moved further away from helping family members. And it’s not just a problem of children unwilling to help parents – many parents are unwilling to receive help from children. But the reality is that sooner or later, independence becomes impossible.
Hard conversations are necessary. It’s important to seek out the truth, no matter how difficult. Find out what should be feared and what you can hope for.
Atul gives 5 questions that family members should discuss when a medical event occurs -
What is your understanding of the situation and its potential outcomes?
What are your fears?
What are you hoping for?
What tradeoffs are you willing to make and not willing to make?
What course of action best serves our understanding of the situation?
While it was a sobering read, I finished it feeling encouraged and empowered to help navigate these tough situations when they inevitably come into my own life – and I hope the same is true for you.
Happy Planning,
Alex
This blog post is not advice. Please read disclaimers.