To the Editor:
Re “My Patient Was Dying, but Would His Wife Accept It?,” by Daniela J. Lamas (Opinion guest essay, Feb. 1):
Dr. Lamas’s essay felt painfully familiar, because I am both a physician and a “difficult” family member.
I am my elderly father’s advocate. When he is acutely ill and cannot speak for himself, I carry his wishes into hospitals that often feel hostile. My father — himself a physician — has been clear: He wants time. Even disabled time. Even imperfect time. Yet when those wishes collide with clinicians’ judgments about his quality of life, they are dismissed. I am no longer seen as a surrogate conveying a patient’s voice but as a daughter who cannot “let go.”
My father is a 20-year pancreatic cancer survivor. Doctors have repeatedly predicted the end is near — yet he has defied the odds. Each hospitalization brings the same weary, skeptical looks, certain they already know the ending.
Once, after concluding there was “nothing more to be done,” a physician handed me a prescription for oxycodone and said softly, “Use it.” My father was not in pain. I understood the implication, left the room and wept.
Prognosis is not prophecy. Families labeled “difficult” often carry love, history and promises made long before the I.C.U. When doctors pause to hear that, we practice better medicine.
Jennifer Friedman San Diego
To the Editor:
Of course the wife was “difficult” when her husband was dying!
“Difficult” is a word best used for finicky restaurant patrons, or hotel guests who are never satisfied. We loved ones, we are not “difficult.” We want those dear to us to stay on this side of the veil. Of course we’re going to fight like hell.
The doctor may feel annoyed, but she gets to go home to her loved ones. Let her be annoyed.
We’re not checking into the White Lotus. We’re fighting against eternity.
Joanna Galuszka Phoenix
To the Editor:
I appreciated Dr. Daniela J. Lamas’s article demonstrating the difficulty of providing medical care to dying patients and their families. She articulates the charged dynamic well. I have been there myself, as a doctor caring for patients dying of diseases, as a father of a child who succumbed to metastatic cancer and as the chair of an ethics committee in a hospital that saw its share of terminally ill patients.
The most important words in her article are “I paused.” So many of these decisions made by clinicians occur within a short time range. Are you going to transfuse? Yes or no. Nurses and I.C.U. doctors function this way. But families sometimes are incapable of making decisions in the moment as they struggle with many emotional factors complicating their answers. Yet we as physicians expect them to.
But one of the important things I learned while serving on an ethics committee is the value of waiting. The value of giving time. The pause. People change once they’ve had time on their own to think about their decision, to share their thoughts with other family members and friends, and to be alone in their minds with a difficult situation.
Dr. Lamas, I am glad you “paused” and glad you and your staff experienced some relief once the decision for comfort care was made.
Keith Jantz Stilwell, Kan.
To the Editor:
Dr. Daniela J. Lamas’s excellent essay calls for understanding “difficult” family members of I.C.U. patients, described as those who “challenge our advice.” She suggests that in dealing with these family members, doctors try to acknowledge the fear and vulnerability that underlie families’ angry and defiant interactions with their loved ones’ physicians.
What Dr. Lamas does not address, however, is the possibility that difficult family members might sometimes be right in their demands.
I think about my own situation some years ago in an I.C.U. where physicians strongly advised disconnecting my life support system. Had it not been for the strenuous objections of my “difficult” friend and advocate, I would not be living a satisfying life in the city of my dreams at a ripe old age. Sometimes “difficult” family members and friends should be heeded!
Beatriz Chu Clewell Madrid
To the Editor:
As a palliative care nurse practitioner, I appreciated Dr. Daniela J. Lamas’s essay about “difficult” families. My team and I are often called in to such cases in the I.C.U. As Dr. Lamas notes, listening to such families is a key way to uncover issues, potentially defuse tense situations and provide additional support. This is what palliative care does in the I.C.U.
My recommendations are to involve palliative care early on to help get to know family members and hear what’s behind their sometimes unrealistic demands. Another is to have formal family meetings early and then every few days in the I.C.U. The evidence shows that this can help clarify and confirm the goals of care sooner in an I.C.U. stay and help doctors better understand where families are coming from, which Dr. Lamas’s story confirms.
It’s too bad this family meeting didn’t happen sooner with this wife and mother, both to hear her and to provide more support to her and her family.
Marian Grant Reisterstown, Md.
To the Editor:
As a retired hospital chaplain, I was surprised that there was no mention of the role of a chaplain in this story of the woman who refused to accept the fact that her husband was dying. Chaplains are invaluable in situations such as these. They are trained to communicate with the “difficult” family members.
The wife was dealing in part with anticipatory grieving. She was hearing what was being said to her. She just did not want to accept it at that time. Did the hospital offer her chaplain services?
Barbara Sorin Wallingford, Pa.
To the Editor:
Most of us will be “difficult” advocates when someone we love is dying. As Dr. Daniela J. Lamas points out, it is usually more about us and the void in our life that will be created than the suffering of the person dying.
As a volunteer who has been with many families facing these issues, I find that discussing how you want to die before you have to is the best way to get to acceptance. As you discuss how you feel about dying, you come to accept the inevitability of death. And knowing what a person wants makes acceptance easier on everyone.
Brian Ruder Portland, Ore. The writer is a board member and a former president of Final Exit Network.
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