How To Talk About Death and Dying — Part 1 of 2
By: Shelly Tat
Tags: Stories That Matter, End Of Life Planning, Death And Dying, Covid 19, Advance Planning

Photo by Silvestri Matteo on Unsplash

“At least two kinds of courage are required in aging and sickness. The first is the courage to confront the reality of mortality — the courage to seek out the truth of what is to be feared and what is to be hoped… But even more daunting … the courage to act on the truth we find. The problem is the wise course is so frequently unclear… But the challenge… is …[o]ne has to decide whether one’s fears or one’s hopes are what should matter most.”

- Atul Gawande. Being Mortal: Medicine and What Matters in the End. Metropolitan Books, 2014.

*Patient’s name has been changed.

During my last rotation as a medical student I met Mei*, an elderly Chinese woman who was nearing death after a stroke. Mei was in her late 80s and I was first introduced to her after her stroke. Even though Mei’s heart was beating and she was breathing, she “wasn’t there.” The extent of Mei’s stroke was severe and irreversible. It left Mei unresponsive, non-verbal, unable to eat & drink, and unable to move. Every morning for over a week when I came to round on Mei, Mei’s daughter, son, or grandchild would be at Mei’s bedside eager for an update. Each family member was hopeful that Mei would first and foremost survive her stroke, and secondly would regain some functionality.

Discussing goals of care at daily meetings with Mei’s family was difficult on multiple levels. The first level was the language barrier that existed between Mei’s family who spoke Mandarin, and the team taking care of her speaking English. A conversation about death, dying, and end-of-life goals of care are difficult to have in any situation. However when a language barrier exists, certain aspects of connecting with one another are lost, even with a translator to assist.

The second complicating aspect regarding Mei’s situation was that she did not have an advance directive. An advance directive is a legal document that outlines the person’s medical goals of care if she does not have the capacity or ability to make decisions on her own. The most common questions regarding medical goals of care include whether the person would like to have chest compressions if their heart were to stop, be on a ventilator if the person was not able to breathe on their own, and consent to procedures or medications that may prolong their life but may not necessarily improve quality of life. Without an advance directive, to move forward with medical treatment plan of care, the person next to kin of the patient would have to make medical decisions. Mei was widowed, so her next of kin were her four children. In a situation where children make medical decisions for a patient, the majority must come up with an agreement. In Mei’s case, three out of four of her children had to come to a joint decision for Mei’s care plan.

Photo by Daan Stevens on Unsplash

As one may guess, there is often differing in opinions and beliefs of goals of life care/decisions made amongst multiple children. In Mei’s case, each family member was respectful of one another’s opinion and wishes for their mother. Unfortunately, there are many situations where differing opinions among children leads to arguments, grudges, and turmoil. Problems can also arise when not all family members are geographically at the same location to make decisions together. These issues lead to delay of care for the actual patient and increase unnecessary or unwanted care. Additionally, due to cultural expectations, Mei’s eldest son was to make final decisions despite majority children’s decisions for end-of-life care. After two weeks on inpatient service, I left without knowing what Mei’s family had decided for her.

Mei’s case affected me because she shed light on my aging parents and their desires for end-of-life goals of care. I did not want my sisters and I to fight, argue, or disagree with one another and possibly ruin our relationship due to difficult decisions. A rift between my sisters and I would be the last thing that my parents would want, which is why it is so important to have these decisions be made for us prior to the inevitable.

In order to find a way to communicate to my parents the importance of their desires for goals of care whether it is during a hospitalization or end of life, I reached out to my friend Nori*. Nori’s mother experienced a catastrophe of resentment, guilt, and dissolution of sibling relationships due to disagreements regarding end-of-life care in addition to unfair splitting of assets after Nori’s grandmother had died. In order to avoid a similar fate, Nori used a card game that had difficult goals of care and end-of-life questions on it to help transition into the topic with her parents. Though this may work for some families, it didn’t work for mine.

The real turning point that persuaded my parents to move toward expressing their goals of care and planning for end-of-life was Covid 19. Covid 19 is a viral infectious disease that affects humans of all ages, but its effects are particularly worse in those with co-morbid conditions and in the elderly. Perhaps it is the fact that hundreds of thousands of people have died of Covid 19 in the US, many of whom died alone, that prompted my parents to take finally address what they normally would not.

Family dynamics is different for everyone and ever-changing. How then is it best to go about talking to family about death and dying?

This is part 1 of 2 on the topic of Death and Dying.

Part 2 will talk about how to discuss death and dying with loved ones.