For the past few weeks a guilty feeling has been gnawing at my conscience.
I’ve been thinking how fortunate I am to be several years into retirement from my job as ethicist at a medical center in New York City.
Bioethicists are now deliberating on guidelines to be followed when it becomes necessary to triage the use of ventilators. To me, having to draw up guidelines on who gets preference for lifesaving care is almost unimaginable. The last time we thought we might confront such soul wrenching decision-making was on 9/11. Sadly, there were few patients; there was no need for triage.
I remember a time when family members begged doctors to withhold or withdraw life support when meaningful recovery was not possible. Physicians were afraid to do what they knew was the right thing to do, to withhold or withdraw in the face of medical futility. Hospital lawyers warned them not to. It was against the law. Most often, these lawyers wished they could support doing the right thing, but lawsuits were too expensive for hospitals.
In 1990, Governor Mario Cuomo signed the New York State Health Care Proxy Law. (How proud he would be of his son our Governor Andrew Cuomo whose moral compass is now guiding us with strength, clarity and humanity.) In 2010, the Family Health Care Decision Act was signed into law in New York State. It allows relatives of incapacitated patients to make medical decisions in the absence of a Living Will or Health Care Proxy. Most states have adopted similar laws.
After New York’s Health Care Proxy law was enacted, we encouraged everyone to complete a proxy form, assigning an agent who knew your wishes concerning medical treatment. If you ever became unable to make your treatment wishes known, your agent — a relative or a friend — could speak for you, articulating your beliefs and your choices. Now, although a Health Care Proxy is not necessary, if you have close relatives who will speak for you, we still encourage having in-depth conversations about treatment choices.
I remember once giving a training session on the then new Health Care Proxy Legislation, to an auditorium full of nurses, social workers and medical interns. I emphasized the importance of the conversation that must take place. The conversation must include scenarios describing what or what may not be acceptable to a patient unable to speak for herself. I encouraged everyone present to educate their patients and their families about the value of the Proxy. At the conclusion of the session I handed out Proxy forms. Many came up to me, requesting a form for their mother, their grandfather, or their aging aunt. I had to remind them that they were not exempt from death; they too, needed to execute a Health Care Proxy. From then on, my training sessions always included the widely publicized tragic case of 20 year old Karen Ann Quinlan, in a permanent vegetative state, on a ventilator, whose parents begged the hospital to withdraw life support. They did not. It was against the law. This was 1975. The New Jersey Supreme Court finally ruled in favor of the parents’ request.
Imagine, parents having to beg for the withdrawal of ventilatory support from a child.
Imagine how the grief and burden might be lessened, knowing that you are honoring her wishes.
Why am I thinking about all of this now?
Because I know that medical professionals will not have the time to have these important conversations with patients and their family members. I know that it will be a source of comfort and relief to know that their patient’s wishes have already been clearly articulated.
I know that ethics consultants will try to support all previously articulated advance medical directives. I also know that during the coming weeks, it might not always be possible to honor a patient’s wishes. I know that triage of life saving equipment is inevitable.
Today I was asked to come out of retirement. I will. And I dread convening the ethics consultation that is inevitable. Today a colleague told me that young doctors are drawing up their wills. They are facing their own mortality on an hourly basis.
Let’s help these doctors. Let’s help the entire health care team. Let us all make our medical advance directives known. If you complete a Health Care Proxy form or Advance Directive, sign it in the presence of two witnesses, neither of whom can be your assigned agent or alternate agent. Give copies to your agent and your alternate agent and make sure your doctor has a copy. During these days of extreme emergency, I suggest you have a copy with you at all times. It should always be easily accessible, not locked away in your safe deposit box.
Don’t wait. Have the conversation today. You should be the one to initiate it, others may be reluctant. It will be a source of comfort and relief to you, your family, your partner, or trusted friend.
It will help our health care providers.
May God help us all.