B546 wants to die
eight years after they saved her.
Cervical-cord injuries are cruel.
For Maria it was a gunshot,
but it could have been a car wreck, a fall,
or a drunken misstep off a roof.
The reasons seemed to matter; now they don’t.
Thirty-two, alone, paralyzed, on a vent,
she mouths “no” to the antibiotics, the heart meds.
“I want to die,” she shouts in a whisper.
They want me to decide if she can decide,
if she has decisional capacity,
if she understands the implications,
if she knows what death means.
If she doesn’t, they will force her to live.
None of us knows what death means.
She has paid with eight years for not deciding,
While we were boasting like heroes.
I don’t know what to do.
I want Maria to choose to live.
I am selfish: It would be easier for me.
13 thoughts on “Decision”
This is a strong reminder of the importance to have conversations about and to document end of life preferences. I have been disapproved of by family for wanting to discuss these intentions because they consider it grisly. How difficult it is to begin this dialogue when there is a crisis or when the patient is unable to communicate and especially when hospital protocol is involved. A doctor who knows the individual would be the best to make a competency decision especially one who has had this conversation with him or her. That is a rare relationship these days and the conversation more rare as our federal government won’t honor a billing to Medicare for an office visit to discuss end of life decisions. The government doesn’t belong in this conversation or the hospital’s requirements to honor a patient’s wishes. What madness!
Powerful poem. Thank you for bringing light to such a difficult subject. We need to be more comfortable with death and dying…and letting go.
After 40 yrs in practice as a very general internist (including 600 babies delivered) , I find myself at what is probly close to the end of my life, as a physician, working in an LTAC attending to And facilitating these discussions almost daily. Transition. Trust. Unconditional positive regard. Active accurate empathy. Diverse lives, struggles, families/friends (or none). Presence.
challenging work you have taken on
There are circumstances and situations wherein death is not the enemy. May we learn to respect our differences.
Well said, Sara Ann. Thank you.
I hope the day comes when a patient in such dire straits no longer has to get approval to die but their own wish is enough. Good poem on the subject.
thank you
Many, many disabled people (including myself!) struggle with the question of what is an acceptable quality of life, and what to do once quality of life dips permanently below that bar. This should be discussed more openly. In my experience no physician has opened this discussion; rather, they tend to avoid it like the plague – or, more recently, COVID-19. And those who judge disabled people harshly for wanting to end their lives when quality of life dips below that bar should instead dedicate themselves to the personal care of a severely disabled person for a year, and then come back and participate in that discussion. And, I’m all for determining competency in these situations, as long as that determination isn’t abused to prevent a decision with which a doctor does not agree. This issue is as loaded as any medical discussion any of us will ever have. And we absolutely need to have the discussion.
Very nice, evocative poem about the ethical and personal complexities around decisional capacity in patients who are contemplating terminating medical care . Many clinicians (including me) look to psychiatrists to help us, hoping they have more insight and expertise in judging patients’ motivations and emotions in these vexing medical situations. God bless you for your work and your poetry.
Love this, so timely for our ‘End of Life bill’ currently being debated in New Zealand. Thank you so much! A powerful piece that weaves so much complexity.
This powerful submission brings back my sister’s decision against further intervention after living about 9 years as a vent dependent person with ALS. She was a singe mom and professor who had made it through a painful divorce following her husband’s infidelity with a woman my sister had called a friend. My sister’s son was only 6 yrs old at the time of her diagnosis, and 9n yrs old when she became vent dependent. Though her son could no longer live with her, she suffered for 9yrs years living on a vent, sustaining multiple infections and horrible decubiti in order to keep an eye on her son’s upbringing, and to guarantee that those of us in her family would remain involved with her son’s life. Once she knew where her son would be attending college, my sister told me she was ready to let go; this was about 6 months before her passing. In the last week of her life, when it was clear she could no longer sustain, the care team turned to my nephew, now the age of majority/18yr old, to make the toughest decision of all for his mother. My former brother-in-law counseled my nephew to allow my sister to be weaned from the vent. My nephew turned to his father, and said, “Who are you, Jack Kevorkian?”. I was able to reassure my nephew that his Mom had already made the decision, that she had communicated it to me, and she would be kept comfortable. I miss my sister every day, but admire her courage to live, then her courage to die.
“she shouts in a whisper”–so powerful, evocative, painful