As end-of-life doulas (death doulas), we are constantly amazed that as people approach death, they don’t understand that they have choices. Hearing that you have a terminal diagnosis can be paralyzing, and take a while to sink in. In the meantime, critical questions are often not asked, and subsequently overlooked. Our job as end-of-life doulas is to ask those difficult questions so that you understand your choices at end of life.
When someone receives a terminal diagnosis, the first thought is to fight. Exploring therapies to beat the disease is often discussed, and a course of treatment is often recommended. Which is wonderful. But, the other question that usually goes unsaid, is what if the treatment doesn’t work? What are the options and considerations then? Because everyone wants to remain optimistic, that road is often not explored. And then, if there is a sudden and rapid decline, and their loved one can no longer communicate their wishes, the family is left having to guess about treatments and decisions.
A friend of mine’s father (we’ll call him Tony) was terrified of doctors and refused to go for annual checkups. He also would never talk about death or his wishes. He thought if he talked about it, he may bring it about. At 80 years old, Tony was overweight, but otherwise in seeming good health. One morning, Tony passed out in his home, and 911 was called. The EMTs brought him to the hospital where his heart stopped beating. Not having a DNR, they were required to perform life-saving measures and the doctors brought him back, but he was put on a ventilator. As there was too much damage done, the doctors said there was little hope for him to come out of the coma, but they would try everything they could. What ensued after this with the family was chaos.
The decision was now: do we keep him on the ventilator, keep trying different medications, and for how long? And who makes that decision? He had no living will or health care proxy. Tony’s wife wanted them to try everything to bring her husband back. She refused to believe he was brain dead. His three daughters said he would not want to live that way and they wanted to remove the ventilator. What ensued was internal family fighting, with each family member insisting they knew what Tony had would have wanted. Several weeks later, after much anguish, heartache, and discussion, the ventilator was removed. Tony died shortly thereafter.
Much of the family fighting could have been avoided. If Tony had simply discussed his wishes, no one would have had to guess. But he refused to acknowledge that one day he would die and that he had a say in some of those end-of-life decisions. Simply having those conversations would have made the path clearer for his loved ones.
The earlier end-of-life conversations are had, the easier it becomes. We are all going to die. Normalizing these discussions and putting them down on paper in the form of an advance directive eases the burden on loved ones. Here are a few questions to get the conversation going:
What is important to you at the end of your life?
Are there kinds of treatment you want or don’t want?
Who do you want to be involved in your care?
If you have a diagnosis, have you asked your healthcare professionals what the projection of the illness looks like?
Who should be your healthcare proxy and will they be able to carry out your wishes?
These are just a few questions to start the conversation. Know that you can always revisit your answers as things can change over time. Having these difficult discussions removes the guesswork and burden on your family. It is actually the greatest gift you can give them.
~ Janie Rakow