To the editors:
On “A Better Way to Face Death”, by Dr. Daniela J. Lamas (Opinion guest essay, January 6):
Too often advance directives are understood as immutable guidelines for how a person dies. We have found that advance directives are more useful when we focus on how a person wants to live.
When we ask about ventilators or dialysis or artificial nutrition, we usually ask people to give their opinions on topics they don’t know well, usually based on preconceived and often inaccurate views about these medical technologies. It’s no wonder, then, that when actually confronted with the technology, patients will change their mind. What was once unacceptable can now be bearable because life still has a desirable quality. The opposite can occur; treatment that was once highly desired in abstracto may not deliver the quality of life hoped for.
Advance guidelines should accomplish two goals: identification of a surrogate – someone who can “put in the patient’s shoes” – and identification of preferences – which is important in how you live.
A focus on developing ideas rather than completing documents is more likely to bring the patient’s voice to decision-making at critical moments.
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 on the team.
To the editors:
dr. Daniela Lamas strongly advocates careful consideration of advanced guidelines, but I would also like to embrace the advanced age of the patient as a critical factor in end-of-life decisions.
I was born during the Hoover administration, so death is not an abstract concept to me. While there’s a plethora of suggestions on how to reach old age (many involve kale and Pilates), there’s less information about what happens when you get there. Once upon a time in the 1980s, bodies begin to lose reliable mechanisms, and there is no better evidence than the aisles of adult diapers in our markets. Foods you once enjoyed punish you. Mobility problems set pitiful limits. Your address book looks like a cemetery. Every day offers small challenges.
The documented horrors of nursing homes, the toll elder care takes on families, and the obscene costs of long-term end-of-life care all play a role.
Sincere conversations with my elderly friends assure me that we would all rather die in our sleep than linger a little longer in discomfort and humiliation.
The fear, humiliation, and anxieties of advanced age require 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, New York
To the editors:
My father was one of those people who changed their mind about end-of-life care. Before he got cancer, he thought getting plenty of morphine would be the top priority if he was suffering.
When he was actually dying of cancer, he discovered that he hated morphine. It made him extremely constipated, gave him disturbing hallucinations and diminished his ability to be present for the many visitors who came to see him during his last illness.
His healthcare provider came by every day and put on the morphine, and my dad always turned it down. He said he wasn’t in as much pain when he lay still, and he found that holding hands gave him more relief than morphine.
Anne Barschall
Tarrytown, New York
To the editors:
Most of us cannot predict exactly what will happen when we are faced with death. dr. Daniela J. Lamas discusses cases common to doctors: Patients change their mind about treatment options, sometimes just to please others.
While some patients are grateful that their wishes were ignored and their lives preserved, others hate unwanted treatments that prolong their lives and suffering.
Patients should discuss advance directives with their doctor. Doctors should regularly discuss advance directives with patients to see if patients have changed their mind. New medical conditions and major life events provide reasons to revise advance directives, but in principle patients have the right to refuse treatment, and physicians should respect patients’ advance directives and not override them.
Joel Potas
Syracuse, New York
The writer is a former medical director of Hospice of Central New York and a professor emeritus at the Center for Bioethics and Humanities, Upstate Medical University.
To the editors:
“A better way to face death” raises the problematic problem that either the patient’s family or the doctors in charge ignore the wishes expressed in a health guideline because they somehow believe that the patient did not believe the instructions she had laid down in law.
If I were the patient described in this guest essay, I’d be furious that my wishes were not followed up. I’m 80, have a health condition that could put me in the exact same situation as described in this piece, and I’ve been adamant that my desire to never go to an ICU be followed. Leaving it up to others to decipher at some point if I’ve somehow changed my mind is exactly why a health care guideline exists.
My family knows that what I have written is what I expect. I wouldn’t want my agent, nor the doctors at the bedside, to question my wishes.
Susan Meister
Pebble beach, California.
To the editors:
dr. Daniela Lamas took me back to a moment 11 years ago when I had to decide if it was time to end active medical care for a dear friend. He was in his early 80s, had fallen and suffered a traumatic brain injury. His lungs filled with fluid. His medical directive was: if I’m going to die, don’t take extraordinary measures.
My experience confirmed Dr. Lamas’ vision for meaningful conversations during treatment, if possible and in the presence of the medical team. My friend was unconscious and I was given conflicting opinions as to whether he was going to die.
My decision, which I live comfortably with today, was to bring six close friends of his to his room. We had the conversation in his presence and agreed it was time to return 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 that he was telling me that “everything was fine”.
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 editors:
I am the son and caregiver of a 92 year old father who suffers from early stage dementia and aspiration. dr. Daniela Lamas alludes to a truth I learn daily on the other side of the equation: Although it is heartbreaking for me to see the father I love so deeply, 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 he died? New. Nevertheless, the moments when he meets someone new and asks them questions, when he feels safe walking because I support him, or when he remembers a strange, obscure detail of an object in his house, prove that his life has quality.
My “job” is to maximize the positive and control the negative and pray that I will know when the equation has shifted so much that its time should I have to make that decision. It hurts terribly, but it’s his life and it, not mine, is my responsibility here.
Joshua Mack
New York
To the editors:
Years ago, when my mother was in a hospice with terminal cancer, she asked my father, “Am I going to die?” He replied, “Maybe.” It was a compassionate response that was honest, yet left a door open to unexpected changes. I am eternally grateful to him for that loving, elegant and inspired moment of communication in her last days.
Paul Langland
New York