A visit with your doctor often involves discussing unpleasant topics like your weight and your blood pressure. Neither compares to a conversation about death. But avoiding that particular subject means not planning the kinds of medical treatment we want at the end of life. Now, a study published in the Journal of Palliative Medicine suggests a different approach that just may do a better job of opening up the conversation between patients and physicians.
Instead of asking patients what kind of care they want, the study's author think it better to ask patients what's on their bucket list. A bucket list contains the things you want to do before you die. For people who have many years of life ahead of them, the list may be about things they fantasize about doing if they win the lottery. As people age, and especially if they have a terminal illness, the list has much more concrete things that are quite achievable with the right planning.
Researchers at the Stanford University School of Medicine surveyed more than 3,000 people across the U.S. They found that a whopping 91 per cent of them had made a bucket list. That is much greater than the 20 per cent or so of Canadians who have advance directives regarding the care they want at the end of life, according to a study.
The things that appeared on individual bucket lists of those surveyed fell into six categories. Nearly four out of every five surveyed said they wanted to travel. Close behind was accomplishing a personal goal. Half the people surveyed said they wanted to achieve a specific milestone such as walking a child down the aisle or attending the birth of grandchild. Just under 17 per cent said they wanted to spend quality time with family and friends. Sixteen per cent said they wanted to achieve financial stability, and 15 per cent said they wanted to do something daring such as parachute jumping. Not surprisingly, younger people were far more likely to put risky things on their bucket list.
The usual approach is for doctors and patients to tiptoe around the subject of death by making the conversation about an unspecified amount of survival time left. There may be some discussion of how much time, though that is often too uncomfortable for patients to discuss. More palatable are questions such as how much time the patient might gain through another round of chemotherapy and whether it's worth it to try an experimental treatment.
No matter how the questions are framed, the goal is time itself. The assumption is that you give patients more time, and they figure out what to do with it.
The new approach gets patients to stop thinking about extra time and think instead about the things they want to do with the time.
Why the change in approach? As an ER physician who has had many conversations with patients at or near the end of life, It's just easier to start one about a bucket list than about death. Talking about attending a significant wedding anniversary is inherently more positive than hashing out whether or not one wants to be put on a ventilator should one stop breathing.
As well, saying what's on the bucket list communicates what's important to the patient. In his posthumous memoir When Breath Becomes Air, Dr. Paul Kalanithi wrote about telling his oncologist he wanted to complete his residency in neurosurgery. As his widow Dr. Lucy Goddard Kalanithi told us on White Coat, Black Art, the oncologist designed a treatment regime that enabled him to do so in relative comfort. Knowing the date of a milestone such as a birthday tells your doctor exactly when you need to be well enough to attend.
When it comes to scheduling chemotherapy, there's a surprising amount of wiggle room. I've known patients who didn't realize that treatment can be postponed by weeks or even a month to enable a trip overseas.
The study I've been talking about is the first that has proposed asking about a bucket list as a way to get people to talk about advance directives. The hope is that talking about a bucket list gains trust by demonstrating that the patient's wishes are the highest priority. Doctors like me can use the bucket list as a starting point to help the patient figure out what he or she wants at the end of life. Knowing what's on the bucket list gives physicians an unprecedented window into the patient's hopes and dreams.
These are just hypothesis that need to be tested on the front lines. But it makes enough sense intuitively that I think we should start incorporating it into my practice now. And, it makes me realize I haven't thought enough about what's on my bucket list.