organization Ellen Goodman and a group of colleagues and concerned media, clergy, and medical professionals started in 2010. They gathered to share stories of “good deaths” and “bad deaths” within their own circle of loved ones.
Their vision emerged as a public campaign spanning both traditional and new media that would change our culture. The goal: to make it easier to initiate conversations about dying. No small feat in a culture which has removed the end of life and the process of death to unseen, unspoken, unheard corners of our consciousness.
I remember seeing Ellen Goodman on television talking about how the benefits for families could often resonant beyond anyone's imagining. There was a family who had gotten together to have "The Conversation" and not wanting to have Grandpa who was in his eighties feel singled out they had all answered the questions. When a young member of the family died tragically in a car accident; knowing what he wishes were and being able to honor them gave the family some solace in their time of grief.
This made sense to me and I thought we should all be having "The Conversation" and revisiting it periodically. As Athul Gawande writes in Being Mortal "This experiment of making mortality a medical experience is just decades old.It is young. And the evidence is it is failing. Our reluctance to honestly examine the experience of aging and dying has increased the harm we inflict on people and denied them the basic comforts they most need."
Ask yourself and your loved ones what is meaningful life to you? And ask the same question again and again, because that answer will probably change.
Now that we are reading, talking and listening to one another more medical professionals are addressing this broken medicalized system of dying.
Ellen Goodman's dementia-related kit also presents choices at different stages and conditions. Ms. Goodman's concern is that Dr. Gaster's new form "represents a patient-doctor agreement".
“We need to have families involved,” Most important is the conversation with the decision-maker. That person has to understand what you value and what’s important to you.”
There are also those who fear that these advance directives will not be where they are needed when they are needed. That is a consideration but should not preclude documenting your desires.
Have the widest ranging conversation with your family and physician and put your wishes in writing, revisiting these questions periodically to make sure they are still YOUR wishes for YOUR life.