Opinion | Tough Decisions About End-of-Life Care - The New York Times

Readers offer personal stories in response to a doctor’s guest essay about advance directives.

To the Editor:

Re “A Better Way to Face Death,” by Dr. Daniela J. Lamas (Opinion guest essay, Jan. 6):

Too often, advance directives are construed as immutable guides to how one dies. We have found advance directives to be more helpful if we focus on how one wants to live.

If we ask about ventilators or dialysis or artificial nutrition, we are typically asking people to express opinions about topics that they do not know well, usually based on preconceived and often inaccurate notions about these medical technologies. It is little wonder, then, when actually faced with the technology, patients will change their mind. What was once unacceptable may now be tolerable because life still holds a desired quality. The opposite may occur; treatment that was once strongly desired in the abstract may not deliver the quality of life that was hoped for.

Advance directives should accomplish two goals: identification of a surrogate — one who can “stand in the shoes” of the patient, and the identification of preferences — what is important in how you live.

A focus on evolving ideas rather than document completion will be more likely to bring the patient’s voice to decision-making at crucial times.

Margaret M. Mahon
Ann Berger
Bethesda, Md.
Dr. Berger is chief of the Pain and Palliative Care team at the National Institutes of Health Clinical Center, and Ms. Mahon is a nurse practitioner with the team.

To the Editor:

Dr. Daniela Lamas makes a strong case for careful consideration of advanced directives, but I would also embrace the advanced age of the patient as a critical factor for end-of-life decisions.

I was born during the Hoover administration, so for me death is not an abstract concept. While there is an overabundance of suggestions on how to achieve old age (many involve kale and Pilates), there is less information on what happens when you get there. In one’s 80s bodies begin to lose once reliable mechanisms, and there is no better proof than the aisles of adult diapers in our markets. Foods you once enjoyed penalize you. Mobility issues impose woeful limits. Your address book looks like a cemetery. Each day presents small challenges.

The documented horrors of nursing homes, the toll elder care takes on families and the obscene cost of protracted end-of-life nursing all come into play.

Heartfelt conversations with my aged friends assure me that we would all prefer dying in our sleep to lingering a bit longer in discomfort and humiliation.

The anxiety, indignities and angst of advanced age demand acceptance — and a sense of humor. Like most of my peers, I am not afraid of dying but of being kept alive.

Terry Martin Hekker
Nyack, N.Y.

To the Editor:

My dad was one of those people who changed their mind about end-of-life care. Before getting cancer, he thought that his top priority when suffering would be to get lots of morphine.

When he was actually dying of cancer, he discovered that he hated morphine. It made him extremely constipated, gave him disturbing hallucinations and impaired his ability to be present for the many visitors who came to see him in his final illness.

His health care proxy came by every day and turned up the morphine, and my dad always turned it down. He said he didn’t have that much pain if he lay still, and he found that he got more relief from holding hands than from morphine.

Anne Barschall
Tarrytown, N.Y.

To the Editor:

Most of us can’t exactly predict what will happen when facing death. Dr. Daniela J. Lamas discusses cases common to physicians: Patients change their minds about treatment options, sometimes only to please others.

While some patients are grateful that their wishes were overridden and their lives maintained, others resent unwanted treatments that prolonged their lives and suffering.

Patients should discuss advance directives with their physicians. Physicians should regularly review advance directives with patients to see if patients have changed their minds. New medical conditions and major life events provide reasons to review advance directives, but basically patients have a right to refuse treatments, and physicians should respect patients’ advance directives and not override them.

Joel Potash
Syracuse, N.Y.
The writer is former medical director of Hospice of Central New York and emeritus professor at the Center for Bioethics and Humanities, Upstate Medical University.

To the Editor:

“A Better Way to Face Death” raises the problematic issue of either the patient’s family or the physicians in charge ignoring the wishes expressed in a health care directive because somehow they believe that the patient did not mean the instructions she legally formalized.

Were I the patient described in this guest essay, I would be furious that my wishes were not followed. I am 80, have a health condition that could land me in exactly the same situation described in this piece, and have been unwavering in my insistence that my wishes never to enter an I.C.U. be followed. To leave it to others to decipher at any given moment if I have somehow changed my mind is exactly why a health care directive exists.

My family knows that what I have written is what I expect. I would want neither my proxy nor the physicians at the bedside to second-guess my wishes.

Susan Meister
Pebble Beach, Calif.

To the Editor:

Dr. Daniela Lamas brought me back to a moment 11 years ago when I was required to decide if it was time to end active medical care for a dear friend. He was in his early 80s, and had fallen and suffered a traumatic brain injury. His lungs were filling with liquid. His medical directive was: If I am going to die, do not take extraordinary measures.

My experience affirmed Dr. Lamas’s vision of meaningful conversations at the time of treatment if at all possible and in the presence of the medical team. My friend wasn’t conscious, and I was getting conflicting opinions on whether he would die.

My decision, which I live comfortably with today, was to bring six close friends of his into his room. We had the conversation in his presence, and agreed that it was time to revert to palliative care. He died a few days later. A week later, there was a moment when I felt his presence around me, and I understood him to tell me that “everything was OK.”

These decisions will be the hardest people will ever have to make. There is no easy way to do it and no real training for these moments.

Sam Simon
McLean, Va.

To the Editor:

I am the son and health care proxy of a 92-year-father suffering from dementia and early-stage aspiration. Dr. Daniela Lamas hints at a truth I learn daily on the other side of the equation: While it is heartbreaking for me to see the father I so deeply love diminished, often lost and confused, he experiences love and joy every day.

Is his “quality of life” what I would wish for him or what he imagined when hale? No. Nevertheless the moments when he meets someone new and asks them questions, when he feels secure when walking because I support him, or remembers some odd, obscure detail of some object in his home, evince that his life has quality.

My “job” is to maximize the positive and manage the negative and pray that I will know when the equation has shifted so much that it is his time, should I have to make that decision. It hurts beyond hell, but it’s his life and it, not mine, is my responsibility here.

Joshua Mack
New York

To the Editor:

Years ago when my mother was in hospice care with terminal cancer, she asked my father, “Am I dying?” He replied, “Maybe.” It was a compassionate answer that was honest, yet left a door open for unexpected changes. I am forever grateful to him for that loving, elegant and inspired moment of communication in her last days.

Paul Langland
New York

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