Dr. Sherwin Nuland, surgeon, bioethicist and author of the book “How We Die,” died last week. He was 83 years old and died from prostate cancer. He felt it was important to describe in his book how we die, physically and mentally, from cancer, heart disease, Alzheimer’s, and other common illnesses so we could have frank discussions with our doctor to help us deal with those aspects of illness and death that frighten us the most.
His first patient as a med student in a hospital ER died suddenly from a heart attack. He experienced the death of many family members including his mother when he was 11, and was with his father and his brother when they took their last breaths as they died from colon cancer. As a physician, he observed the process toward death of many of his patients in many different ways.
He wrote that death with dignity is a myth and while we would all like to die a good death, it rarely happens that way. Most of the time, patients suffer interminably, often prolonged by aggressive treatments, visits to the ICU, or futile treatments, through pain, humiliation and lack of control. Even under the best of care, the dying process, especially a prolonged dying process, can be agonizing for both the dying person and the family.
As a hospice volunteer for many years, I witnessed a number of deaths and been told about many others by volunteers, nurses and chaplains in support groups. Enough to agree with Dr. Nuland that we don’t always get what we ask for in that regard and when it does happen, it’s just a coincidence.
More likely, we will be completely helpless or barely coherent and things will go on behind our backs without our knowledge or understanding by people who say they have our best interests at heart. We may want to die at home in our own bed surrounded by family but it’s more likely the last thing we’ll see will look more like a scene from a horror movie in a bright, sterile torture chamber.
Doctors will tell patients and families what they think they want to hear, that there is always something that can be done, that there’s always hope that the next treatment will be the one. Families tell their dying loved ones half truths to protect them, make promises they can’t keep, pretend everything is going well when it isn’t, avoid conversations about how they want to die until it is too late. Everyone follows the philosophy, as Dr. Nuland said he did for so long, that anything is better than death.
911 is called, CPR is administered, ribs are broken, tubes are inserted, bodies are bruised, invasive procedures performed. Maybe patients are put on ventilators and paralyzed so they don’t fight the restraints that bind them to keep their bodies alive. They know everything that is going on but they can’t do anything about it. They are trapped in a private hell while decisions about how to prolong life are debated in the hallways. Their death is terribly, terribly difficult and is the usual outcome of all this activity. Statistically, only a small percentage of these patients make it out of the hospital alive after this frightening experience. An even smaller percentage survive for more than a few months.
What gets taken away from the terminally ill or elderly patient is the opportunity to be at home surrounded by their loved ones during the last few weeks or months as the body shuts down naturally and the person adjusts to letting go. They lose the time to make amends and reconcile their lives, to say their goodbyes and fulfill their bucket lists.
This is what Dr. Nuland came to understand through the deaths of his patients and family members and why he wrote his book to help people make informed decisions about their preferences for end of life care, including when to stop aggressive, invasive treatments and accept pain management for the remainder of one’s life.
During his lifetime, hospice and palliative care have evolved to assume a bigger role in the care of terminally ill patients to keep people out of the ICU and allow them to die a good death at home surrounded by their family. It’s not available everywhere yet. Budget cuts are a problem. And it doesn’t work well for everyone. But it is bringing the business of dying back into the family and changing the practice of medicine at the end of life. Healing doesn’t necessarily mean curing the disease.
Dr. Nuland realized it’s not true that anything is better than death and, for many people, what they would have to go though in order to come out the other side alive is simply not worth the pain and effort for the short reprieve. He came to recognize that death is part of the life cycle and to redefine hope as the belief that something meaningful will happen, that we lived a life that meant something to others and will be renewed through others whose lives we touched.
Although Dr. Nuland wasn’t a proponent of physician-assisted dying, he was a strong advocate for end of life planning, including having The Conversation among family members, appointing a healthcare representative with the authority to speak for you if you become unable to communicate, and filling out an Advanced Healthcare Directive to assure your end of life wishes are carried out.
Being proactive doesn’t mean you are giving up or are by any means ready to die. The Conversation ideally should take place long before anyone is even sick or turns 65 because life can change on a dime and suddenly there is no time. Decisions have to be made immediately, no discussion.
If there has been no conversation and there is no Advance Healthcare Directive, the family is put under greater stress by being forced to make healthcare decisions for you without knowing what you might have wanted. As Dr. Nuland wrote doing everything may not always be the best choice. The question is where do you draw the line for your self? Next– tell someone!
Next month, April 16th, is National Healthcare Decisions Day, download Advanced Healthcare Directive forms by state for everyone in your family.
Get some tools and advice about having The Conversation with your family or with your neighbors, groups, organizations.
Prepare your self mentally, emotionally and spiritually for your death whenever, however it happens – How to Die Consciously by Diane Goble