We're not very good at dying.
I suppose it makes sense. Death is taboo. We can't foresee the future and who knows what will happen. It's painful to think or talk about our own death, or the death of someone we love. For these reasons and many more, we tend to leave it to fate.
This avoidance was reflected in results of the continuing Coping with Cancer trial recently published in the Archives of Internal Medicine. A team of investigators, led by researchers at the Dana-Farber Cancer Institute in Boston, interviewed 603 patients with advanced cancer. They asked the patients, who had about "six months left to live," whether their doctors had discussed their wishes for end-of-life care. Keep in mind this is at a famous specialist centre that often cares for people at the end of their lives. The majority - 69 per cent - said those conversations had not taken place.
There are many costs of not having this conversation. The most "expensive" part is that patients end up dying in a way that they would not have wished. For example, they may feel they are ready to die today, but are kept alive in an intensive-care unit for a week instead.
This was seen in the study because the absence of end-of-life conversations led to more physical distress in the final week of life, as reported by nurses and caregivers.
The second cost is more predictable. In the last week of life, those patients who had talked with their doctors wound up with medical bills that were on average 36 per cent lower than those of patients who did not have end-of-life conversations. This signals that they made a conscious effort to plan a good death. If we say nothing, we tend to get everything the hospital can give us.
Usually our prime directive in medicine is to ask for more: more tests, more imaging and more opinions. The son or daughter or doctor or nurse who arrives on the scene feels better when they've added rather than subtracted. Yet at the end of life, less is often more. There are many reasons why patients who have advanced illnesses receive inappropriate care, but most of them are rooted in a medical philosophy that is focused almost exclusively on curing illness and prolonging life, rather than on improving the quality of life and relieving suffering. After a long life, many prefer not to have a high-tech death at the hospital in June, but instead would like to die at home in May surrounded by loved ones.
A friend phoned the other day as she had been called to Ottawa to care for her mother, who has had Alzheimer's disease for some time and was very ill with pneumonia. I asked if they had treated her with antibiotics. She thought for a second, as if absorbing the implications of this, and said she didn't know. When she got back home, she called me and said that her mom had survived but that the family had mixed feelings since they believe she would not have wanted to live in her current state. She also told me of her sister's revelation that the emergency room doctor had called and said, "We've seen your mom here a few times lately ...," but it was only in retrospect that she realized that she had been offered the option that her mother not be treated with antibiotics.
Herein lies the dichotomy, the decision to focus on reducing suffering is made only after life-prolonging treatment has been ineffectual and death is imminent. It's very hard to switch gears - to let go of the rope.
It's a lot easier when you have a clear sense that this is what the person would have wanted.
Acknowledging that it's morbid, that things can change, and you reserve the right to change your mind, perhaps it's time to look across the room at your loved one(s) and have a conversation about what a good death would look like to you. What would you want in certain scenarios? (What if I can't talk or write or signal my thoughts? What if I become too sick to eat except through a tube? What if I am demented? Who is my proxy?) This conversation becomes more imperative if you are facing down a tough diagnosis.
Writing down your philosophy is best because informal discussions about these matters can lead to misinterpretation at the time of crisis. As Willie Molloy, a geriatrician and professor of medicine at McMaster University says in his book, Let Me Decide, "If we have stated our wishes clearly, doctors and family don't have to second-guess what kind of treatment we would want." You will receive the treatment you want. You take your family "off the hook." We call this an advance directive.
Believe me, this is all harder than it sounds. Many doctors have told me that they didn't understand why family members couldn't withdraw aggressive care, yet when it came to their own parents they too were paralyzed.
Not all deaths are good and maybe they shouldn't be. Death can be unfair and premature and some may simply side with Welsh poet Dylan Thomas and "rage against the dying of the light." Contrary to popular mythology, families that are disconnected in life rarely find harmony in death.
As Jonathan Swift, the 18th-century satirist and essayist wrote, "May you live all the days of your life." A good death is one that is pain free, dignified and on your own terms. It's when you truly live all the days of your life.
