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Should We Abide by a Suicidal Patient’s Wishes?

The views expressed are those of the author and are not necessarily those of Scientific American.


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It was standing room only in the small pink conference room on the first floor. Doctors, nurses, social workers, medical students and a physical therapist crowded in to meet with Sasha*.

Sasha was there to speak for the patient, her sister. By phone. The white coated assemblage leaned in toward the gray phone on the table, passing it back and forth when Sasha could not hear us speak.

Sasha’s sister, Liz*, was hospitalized nearby. At 57, she was haggard in a hospital gown, hair matted, cheeks sunken. She stared numbly at the TV. Years of alcoholism, an all-consuming eating disorder and a recent overdose had left her lost somewhere between dementia, delirium and encephalopathy. Brain imaging showed a severely atrophied brain; I imagined a layer of smoke hung over the hills and valleys of her cortex.

Liz could speak, and sometimes she made sense, but she could not follow the sense of a conversation or understand complicated questions. She needed help 24/7 – help with bathing, dressing, walking, even going to the bathroom.

Liz had been brought to the hospital by friends found her at home, unconscious in her own feces. Beer cans and pill bottles littered the floor. She had a deep pressure sore on her back, down to the bone. A day or two longer and she would have been dead.

Sasha, the patient’s sister, was determining if Liz should have surgery. Not for the pressure sore, although that day might come. We were there to talk about whether Liz should have a feeding tube placed into her stomach against her wishes.

Liz wouldn’t eat. “No carrots,” she might say, swatting the dinner tray to the ground. Or she would turn her head left and right as the nurses tried to coax a spoonful of pudding past tight lips. Despite constant nursing care, Liz was going from scrawny to skeletal right in front of us. Intravenous nutrition had been started – Liz had not protested, perhaps because she did not understand what it was – but it was a temporary fix. The best alternative to oral nutrition is a feeding tube inserted surgically through the wall of the abdomen and into the stomach. It allows the body to absorb nutrients more naturally and effectively.

Liz adamantly refused the feeding tube. “No, never,” she said consistently when the topic came up. She covered her abdomen with her hands. A psychiatrist, however, had confirmed that Liz was not competent to make her own decisions – she could not express understanding of the risks or benefits of the procedure, or of withholding it.

That was where Sasha came in. Months before her overdose and hospitalization, Liz had signed an advanced directive appointing Sasha as her durable power of attorney for healthcare (DPOAHC). Now that Liz could not decide for herself, Sasha was Liz’s voice. This was ventriloquism, by phone.

We updated Sasha on her sister’s condition, emphasizing the general threat of malnutrition and in particular how it was keeping Liz from healing her large pressure sore. We described Liz’s refusal to eat, the nurses’ herculean efforts to help, and also Liz’s inability to make decisions for herself.

Sasha was warm, polite and bright. She asked probing questions. She told stories of Liz’s wild parties, her one-night stands, the decades of struggle over food. “Control has always been a big issue for her,” Sasha said.

The team recommended a feeding tube. At first Sasha demurred, pointing to Liz’s refusal. But the psychiatrist clarified that Liz did not have decision-making capacity to refuse the procedure, so we relied upon Sasha. Sasha seemed to understand, and said she didn’t want Liz to starve. She asked what the procedure would entail, and what future steps in Liz’s care would involve. We discussed eventual transfer to a nursing home, and said we doubted Liz would ever care for herself again.

Then the conversation took an unexpected turn.

A nurse practitioner asked Sasha what Liz would have wanted had she been able to face today’s decision with a clear mind. Sasha said “Well, that gets kind of complicated.” She described Liz in her heyday: happy go lucky, bubbly, charismatic, flitting from party to party, friend to friend, bed to bed. “She was a bundle of light some days, and a total wreck on others.” One major source of strife with the family had been around Liz’s eating disorder – so many family meals had broken up in acrimony over food intake and control. “One thing is for sure,” Sasha said, “My sister would never want to be cooped up in some stinky hospital. She’d rather die.” She paused. “No offense,” she said, chuckling.

The room went quiet. Not because we were offended – we can’t smell the hospital smell anyway. But because we all knew that Liz would never be the life of the party again. Liz might improve a little, but permanent institutionalization with round-the-clock nursing support would be the best we could offer. If Liz would not want this life, then the feeding tube we were discussing might not be right. Sasha had just said Liz would never want the feeding tube. And yet Sasha had warmed to the idea herself.

Sasha recalled Liz’s eating disorder, her perennially thin frame, the family squabbles over food. “It’d be so wonderful to see her healthy and strong again,” Sasha said. It felt like she had just realized the checkmate move in a decades-long chess game about food. It was completely understandable. But not what Liz would want.

This is when I stepped in. I introduced myself as a physician and a clinical ethicist, and said how much we sympathized with both Sasha and Liz. Then I clarified a key concept in bioethics: surrogate decision-makers like Sasha must make decisions based on the preferences of the person they represent and not their own preferences. Sasha needed to choose what Liz would choose, even if we all understood why Sasha was tempted to nourish Liz against her will.

“I hear you,” Sasha said, “And I appreciate the work you are all putting into this.” She sighed, and said, “But I’m not sure I agree.”

Sasha cited Liz’s previous history of suicide attempts. Liz had not been openly suicidal prior to being found unconscious in her apartment. There was no note. But we all wondered if she had tried to kill herself. Sasha said, “If this whole thing is a suicide attempt, is withholding the feeding tube basically us helping her kill herself?”

This was a harder question. Suicidal patients do lose the ethical and legal right to choose death. And yet patients who were suicidal at one time do not lose the right to make life-and-death decisions for themselves in a saner moment. Therefore we had to ask how well we knew Liz’s frame of mind leading up to her hospitalization, and what Liz would have decided about a feeding tube surgery on a good day when life felt worth living.

We revisited a number of related questions. Was Liz competent at the time she appointed Sasha her DPOAHC? Yes. Was it likely Liz would regain decision-making capacity? No. Did Sasha have the legal right to withdraw nutrition even if Liz was not near death? Yes. Did we know if Liz had attempted suicide? We didn’t know for sure.

But all roads led to the same understanding: Liz would not have wanted the feeding tube or other measures that would prolong a life dependent on full-time nursing care in a nursing home.

Sasha needed time. Sometimes we need a decision swiftly, and we press forward to resolve uncertainty and conflict. In this case, we had time to let Sasha get comfortable with the difficult decision ahead. We closed the conversation temporarily, and continued care for Liz unchanged. Two days later, Sasha called and said she had made up her mind: “Liz wouldn’t want that feeding tube. This isn’t how she would want to live.”

Liz’s caregivers are still providing her with antibiotics and other medical treatments, but in time I predict Sasha will choose more and more to provide Liz with measures that enhance comfort without extending life in an institution. In the end, the care we provide should achieve the goals the patient wants, even if the patient can no longer say what they are. This is true – but much harder – even when the patient had a hard time making good decisions when they were healthy, and strong, and the life of the party.

* Not her real name.

Images: José Goulão, Futurilla, and PINNT.

Tim Lahey About the Author: Tim Lahey, MD MMSc, is an HIV doctor, an associate professor at the Geisel School of Medicine at Dartmouth, and chair of the bioethics committee at the Dartmouth-Hitchcock Medical Center. Follow on Twitter @TimLaheyMD.

The views expressed are those of the author and are not necessarily those of Scientific American.






Comments 19 Comments

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  1. 1. rshoff 11:20 am 08/22/2013

    This is stupid. When someone wants to die, they want to die. Let them. But make it painless.

    Link to this
  2. 2. Sisko 11:55 am 08/22/2013

    Yes

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  3. 3. kikitaylor 1:19 pm 08/22/2013

    When I was in the hospital, I was in such pain, if there had been a “death button” I would have pushed it. Now, I am extremely happy to be alive!

    Link to this
  4. 4. Squeedle 1:24 pm 08/22/2013

    Simple-minded answers to the question of whether to allow suicide are (almost by definition) stupid. “When someone wants to die,” they may not be in their right mind. I’ve been in that position before and I’m glad that I didn’t choose death, ultimately. My feelings of hopelessness eventually passed, and I again wanted to live. I never reached that point again. If someone had come to me, saying they’d help me die, and then done so, it would have been wrong. There is a lot of gray area here and you can’t turn it into a one-line pronouncement without risking being a murderer. For this reason alone, society should never unconditionally support suicide, but there are other questions too.

    I’d like to know how the author draws the distinction between being “suicidal” and being in a “saner moment” with the capacity to make life or death decisions for oneself. If you make a decision to die, is that not the definition of “suicidal”?

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  5. 5. jtdwyer 1:25 pm 08/22/2013

    It’s my hope that physician assisted suicide will soon become an option for all who suffer palliative conditions.

    Link to this
  6. 6. Marsha Keeffer 2:11 pm 08/22/2013

    As a California licensed professional fiduciary, my method of decision-making for clients is, whenever possible, substituted judgement taking into account the client’s wishes, value system, religious beliefs, life history, wants, and needs. It is complemented by narrative research with family and friends to arrive at a decision that preserves an individual’s dignity and is in the best interests of the client.

    This situation points out how important it is to legally make our wishes be known regarding a situation in which we don’t have the capacity to tell others. Whether in a POLST, a medical power of attorney, or DPOAHC, we need to communicate whether we want ‘everything’ done, ‘nothing’ (as in a Do Not Resuscitate order or DNR), or some combination of care in between (tube feed for a 2-week trial only, comfort medication that does not make me incoherent, warm blankets and soft music, etc.).

    My goal as a professional is to achieve what the client wants. When people reiterate what they want annually, it makes it easier to determine that.

    flavors.me/mkeeffer

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  7. 7. plswinford 2:32 pm 08/22/2013

    What percent of the time do people feel like suicide and then recover to a decent life, and what percent of the time do they just slide into worse and worse? Sometimes one just has to go with the numbers. And if most of the time it goes from bad to worse, then an exit via some sort of shot is fine with me.

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  8. 8. Sisko 3:48 pm 08/22/2013

    It should be an individual’s right to choose. Sometime people may make poor choices, (in others opinion) but what gives one individual the right to tell another that their choice was poor in regards to when that persons life should end? Is there some rule that a longer life is better?

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  9. 9. ronjt 4:20 pm 08/22/2013

    The title of this article is misleading. There is no evidence that the patient was suicidal. Sasha made the right decision given her understanding of her sisters wishes. The issue was about quality of life not suicide as the title implies.

    Link to this
  10. 10. danialvitori 4:44 pm 08/22/2013

    my classmate’s mom makes $84/hour on the internet. She has been laid off for eight months but last month her pay was $18870 just working on the internet for a few hours. Read more here…..WWW.ℛush64.COℳ

    Link to this
  11. 11. jgrosay 6:16 pm 08/22/2013

    Probably, nobody needs another person’s help to suicide, they cando it alone, if some request it, I imagine two reasons: either the suicide requests from you an approval of his/her intentions or desires, or wants to take you along with him/her to the darkness.

    Link to this
  12. 12. jtdwyer 6:32 pm 08/22/2013

    jgrosay,
    From what I’ve seen in life, the conditions that would most likely cause someone to wish to terminate their life are those that leave them completely unable to do so without (professional) assistance.

    In any case, it’s certainly very difficult to successfully terminate your own life without incurring suffering for yourself and others – especially in a closely supervised environment such as a hospital.

    In any event, how would your family feel if they discover your body after you’ve shot yourself in the head? How would you feel if you survived?

    Link to this
  13. 13. ianbell 7:45 pm 08/22/2013

    just as Roy answered I didn’t know that any one can earn $4724 in four weeks on the computer. did you look at this page……WWW.ℛush64.COℳ

    Link to this
  14. 14. rshoff 8:36 pm 08/22/2013

    @Squeedle, while I accept your criticism of my short comment, please let me explain what I really think. I really think that living is a choice. And I think that that choice can be taken away from us when we are refused medical assistance as well as when medical assistance is forced upon us.

    I agree with you that this is a complicated and sensitive issue. However, this article described a situation where the caregivers were trying to manipulate a situation. Often times, it doesn’t need to be that complicated. Nowhere did it say she was depressed or in temporary pain. Nowhere did it say that there was an absence of anyone with legal authority to direct the health care team.

    I say in this case, it was not one of those complicated cases. Decide who has the authority to determine action, and follow their instructions.

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  15. 15. Hitchiker of the Galaxy 5:32 am 08/23/2013

    Depression, often unrecognized, is common among elderly, acting on top of other physical and mental ailments. Such people need phychological consultation and eventually anti-depressants, not help in suicide! They can recover and live happily for years, like other elderly people.

    Which is real danger in countries, like the Netherlands, which allow assisted suicide, but righteous “right to die” moralism hides the shortage of psychological care of the elderly.

    Your article also highlights the problem of separating patient wishes and caretaker wishes. For example, if Liz was well groomed and taking antidepressants, would Sascha still decide that healthy Liz would want withholding help in such situation?

    Link to this
  16. 16. rshoff 11:52 am 08/23/2013

    I guess we can’t determine our right to die, until we’ve determined our right to live. What are those rights? At what point is society not required to extend that right? Is it a right or a privilege?

    Do we have a right to live, at any cost to society, just because we are born? Does the birth right guarantee a right to life?

    Those are just some of the questions surrounding our right to die. So instead of framing it as our right to die, maybe we should discuss our right to live.

    Don’t read any bias into those questions. I would argue against what they seem to imply. My point being, that our right to live might be where we focus some conversation and come to agreements before we can determine our right to die. Life/Death sounds like two sides of the same coin, but they’re actually not. Life has a beginning a middle an end. Life has a duration. Death is a moment in time. The final transaction of life.

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  17. 17. jtdwyer 5:40 pm 08/23/2013

    While depression is a common condition among the elderly, someone who has suffered a couple of real good strokes may be quite appropriately responding to their actual conditions – counselling is not likely to be effective in such cases, and routinely stuffing the elderly with antidepressants may not be morally responsible…

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  18. 18. rshoff 5:53 pm 08/23/2013

    I really agree with your comment Hitch, but would like to add that in this case the patient had set up an advanced directive appointing Sasha as her durable power of attorney for healthcare. This was a very active and legal decision to give a third party the power and authority to make the choice. So in this case, the decision maker’s wishes ARE the patient’s wishes.

    As for the caretakers in this case, I think they were just overstepping boundaries and providing guidance to the decision maker when they should have simply been providing information. If the decision maker needed guidance, she should have turn toward a fourth party who was uninvolved in the patient’s care. I assume she did, because she made her own decision independent of the care givers (thankfully). And I always agree with JTDwyer.

    Link to this
  19. 19. bucketofsquid 5:32 pm 08/30/2013

    I know a fairly large number of healthcare workers such as x-ray techs, nurse and doctors and every last one of them has told me that they have DNR orders. That tends to give a lot of weight to the right of the individual to control when they stop living and under what conditions.

    Link to this

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