Why we all need to have end of life conversations
The last time I was in Israel, I went on some home visits with a palliative care physician in the town of Sfat near the Sea of Galilee. My colleague, a devout Jewish doctor, took me to several homes to offer advice on managing his most serious, terminally ill patients. One older Chassidic Rabbi was dealing with an advanced lung cancer, and having a difficult time accepting any kind of help from his young adult children. Next was a young Sephardic woman with advanced ovarian cancer, living in a small apartment with her mother and feeling abandoned by her other siblings. Then there was an elderly widow with far advanced breast cancer, struggling to get through her days because of poorly controlled pain.
In each encounter, the room would eventually fall silent, anticipating my response. To the ailing rabbi I said, “Children usually want to be with their parents when they are ill; it’s a way of expressing that they care;” to the Sephardic young woman, I asked, “Do you think your brothers and sisters are keeping their distance because they are indifferent or because they find it painful to see you so sick,” and to the elderly woman I said, “You’ll be feeling much better once your pain is under better control.”
In each instance, nothing I said struck me as particularly profound, until, that is, I witnessed their responses. The rabbi shed a tear, thanked me and shook my hand. The Sephardic woman smiled as she let go some of her anger towards her brothers and sisters; and the elderly woman quickly retrieved a plastic bag, which she proceeded to fill with the various dried fruits and homemade pastries that bedecked her table and handed them over to me.
Teaching palliative care around the world, I am always struck by how similar people are, wherever they happen to live. In our humanity, we share very common concerns and struggles regarding how to cope with vulnerability and the inevitability of death.
Whenever my plane takes off, I always think about how air travel is the perfect metaphor for life and death. The moment we are born, our lives take flight. Some people remain airborne longer than others; some run into more turbulence than others. Yet, most people are so engaged in the journey, they ignore the fact that landings are inevitable. Working in palliative care, I can assure you, there is a world of difference between a good and gentle landing, as opposed to just ‘crash and burn.’
In our aversion to death, we are like the airline passenger who only wants to think about the free food and complementary drinks; check out what movies are available, and periodically, look out the window and enjoy the view. Focusing on the flight lets us shut out the reality that the ground we see off in the far distance, is ground each and every one of us, without exception, must inevitably return to.
Not acknowledging death does not make it go away, anymore so than talking about it will somehow hasten its arrival.
Discussing death allows you to make plans and to make your wishes known to loved ones. It allows you to state your preferences, affirm your values and clarify your choices. Study after study indicates that it increases the likelihood that you will get the care you want, when you want it and where you want it; and that it could spare your family the anguish of having to make a decision on your behalf, should you no longer be able to communicate, without knowing what you might have wanted under the circumstances.
These conversations do not have to wait until someone is dying. They simply acknowledge that death is woven into our DNA; that it is inescapable.
If all this sounds too daunting, here is some language you might want to consider. Imagine turning to the person you have in mind and begin by saying something like, “I love you.” If that feels like a stretch, you can always start with: “Look, I care about you, most of the time” or “What matters to you matters to me.” “When one of us gets sick or is facing the end, is there anything we should know about each others wishes, to make sure we each get what we want?” You can also speak with your doctor and ask him or her about an advance directive and naming a healthcare proxy — that is, someone who will speak on your behalf when you are no longer able to do so for yourself.
Does that really sound so difficult? Do you really think that you are likely to hurt someone you love or care about by saying “I want to be able to make good choices for you, so tell me whatever you think I need to know to get it right.”
After all, who doesn’t want a gentle landing, as life itself comes to a complete and final stop.
Harvey Chochinov is a Distinguished Professor of Psychiatry at the University of Manitoba, Canada Research Chair in Palliative Care and Director of the Manitoba Palliative Care Research.
This blog is republished on Healthy Debate with the kind permission of our friends at EvidenceNetwork.ca