Dignity Project: Lessons from the field in end-of-life matters
As a 24-year-old new graduate of the New York University occupational therapy program in 1985, I was bursting with enthusiasm and eager to help my patients learn to live their lives as independently as possible, in spite of illness or injury.
I imagined a career filled with a sense of purpose and pride and wasn’t at all prepared for the questions of life and death that would come my way shortly after starting my first job at a large New York City rehabilitation hospital.
The young patients I worked with challenged my thinking about life and death and made me wonder: What is a life worth living? And who decides?
Stanley was 18 when I met him. Shot in the neck at his Jamaica, Queens, high school, he was unable to move any part of his body from the neck down, and he had a tracheostomy tube in his throat to help him breathe. Wondering what could possibly be meaningful to him, given that he had lost most of his ability to do anything for himself, we agreed he’d learn to drive a motorized wheelchair with a chin controlled device and turn pages of a book with a special “stick” placed in his mouth. He would always be dependent on others for all of his care and might never be able to do anything for himself other than drive a wheelchair or turn a page in a book, but Stanley wanted to live as long as possible and was anxious to be the best driver of his high-tech wheelchair. Was his a life worth living?
At 22, Terry was the youngest person diagnosed with Lou Gehrig’s disease and was already fully paralyzed and fed by a tube placed in his stomach when I met him. In college pursuing a degree in architecture when he was diagnosed with the disease, he had come to our hospital because we were known for our high-tech rehab department and we were equipped to deal with a dying young adult.
Terry was also an aspiring poet and wanted a way to type out his poetry.
Back in 1985, all we had to offer him were two tiny push button switches, attached to his wrist splints, and Morse code to tap out what he wanted to say. One of the first pieces Terry composed was a living will in which he made clear he did not want to be resuscitated or have a tube inserted in his neck or throat to keep him alive. This meant that Terry would die of respiratory failure even as his mind remained clear and intact. Was his a life worth living?
In the almost 30 years since I first met Stanley and Terry, I have encountered so many patients, their family members, family members of my own, friends, neighbors, who have struggled with the question “What is a life worth living?”
In my present job as the executive director of the Cooley Dickinson VNA & Hospice, we have taken this on as a community conversation. At senior centers and town hall forums, we are asking, what is a life worth living? We are teaching community members to make their thoughts and wishes known by completing the Medical Orders for Life Sustaining Treatment (MOLST) and ensuring that they have designated a health care proxy. We are helping people understand how to have these difficult conversations with loved ones and friends in spite of the difficult feelings that come up around life, death and loss.
Invariably, at all of these forums and discussions, another question comes up regarding who decides: What about physician-assisted suicide? Or recently, “Is it OK to stop feeding my mother because she would not want to live like this?” Many of these questions have legal, moral and sometimes religious answers, but surely each of us struggles individually to answer these questions. What guidance do we have in answering them?
Thankfully, the state of Massachusetts released findings from its expert panel on end of life, a group convened by Gov. Deval Patrick in 2010. Here is what the panel offered to all of us as a way to answer this question for ourselves and to identify what we all have in common as a community:
To The People of the Commonwealth:
In our richly pluralistic nation and Commonwealth, we have many — and sometimes passionate — differences about important issues, including the most profound moral questions regarding life and death. Nonetheless, we have found that there is deep and widespread agreement in the Commonwealth about the following principles:
1. The life of every person is of incalculable value, through the very end of life.
2. Medical decisions require the informed consent of the patient (or appropriate surrogate), and must always be anchored in the patient’s own values and preferences.
3. While we all share in common the fact of our mortality, our individual values, priorities, and preferences regarding death and dying are highly variable.
4. Care for patients with serious, advancing illness must therefore always be individualized, with patients supported in making well-informed choices from among the full range of options for their care — whether aggressively life-prolonging, or entirely comfort-focused, or some balance of the two.
5. An ethical health care system — one committed to universal patient-centered excellence — would ensure that patients receive the care they want and need near the end of life.
As we wade our way through these deep waters together as community, I often think about Stanley and Terry and how they each chose to answer the question — What is a life worth living? — and what their answers taught me about who decides. We each decide for ourselves.
Jeanne Ryan, executive director of the Cooley Dickinson VNA & Hospice, lives in Amherst with her spouse and daughter, and has a grown son living in New York City working as an EMT.