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Suzanne Minor

Yesterday my friend Sophie asked me to accompany her to a Miami hospital intensive-care unit to see her older brother, Guillermo. He'd been admitted the previous night with seizures and cardiac arrhythmia.

Joined by my husband, we made our way to the ICU. When she saw Guillermo lying immobile, swollen and unresponsive, with a breathing tube in his mouth and other tubes snaking into his chest from IV poles, Sophie broke down sobbing.

Seeing her reaction, I felt a little ashamed at my own calm, although I knew it was hard-earned. During my years as a family doctor working in Miami-Dade County's community clinics, I'd witnessed countless scenes like this one. Where Sophie saw a beloved brother utterly vulnerable and present only physically, I saw a fluid-overloaded patient hooked up to a ventilator, with the appropriate drugs being administered and a dialysis machine cooling and filtering his blood to treat his seizures.

Guillermo's wife, Paola, and his father were there as well. As they filled us in on his admission, I began to feel a growing frustration.

It was no freak accident that had landed Guillermo in the ICU. Rather, it was his inherited tendency to develop polycystic kidneys, the disease that ten years earlier had killed his mother.

Several months back, having spent most of his life managing his condition, Guillermo had simply stopped doing so. Now his kidneys had failed.

"His last nephrologist visit was three months ago," said Paola in a trembling voice, her eyes avoiding mine. We all knew that the visits were supposed to take place monthly.

For several months, she and Guillermo been planning a trip to New York with their seven-year-old daughter, but these plans had been derailed by Guillermo's hospital admission. He had cancelled his latest nephrology appointment, telling Paola that he'd done it because she always got "too melodramatic" over these visits. Maybe she was anxious over his risk of becoming ill; maybe about doctor visits in general. For whatever reason, Guillermo evidently hadn't wanted to spend time worrying about his kidneys.

Then, five days ago, his facial muscles had begun twitching--a sign of electrolyte abnormalities, likely from kidney failure.

Now he was here.

As Paola talked, I felt my gut clench tighter and tighter. Each time Guillermo had taken a step back from his disease, he'd taken a step closer to the ICU.

I've worked hard to shift my paradigm of health care from one of fixing patients to one of empowering them to embrace responsibility for their own well-being. Still, when a patient suffers serious adversity due to self-neglect, I struggle.

Outwardly, I remained calm. Internally, I was reeling.

Why the denial, Guillermo? Did your doctor never tell you what would happen without appropriate treatment? Or did you just choose not hear it?

I wanted to lift him up from the bed and yell, "You were twitching last week, you watched your mom die of this--I was at her funeral with you--and you didn't take care of your kidneys? What about your wife? What about your daughter? What were you thinking?"

Today, I awoke unrested, unmotivated. A heavy sadness has descended on me. My whole being seems full of tears.

I contact Sophie and learn that Guillermo's hypothermic treatment hasn't worked. Even after twenty-four hours of general anesthesia, his seizures are continuing, with no end in sight. The situation is bleak.

After reading up on the prognosis for unresponsiveness due to renal failure, I call Sophie back and gently tell her how critical her brother's condition is.

I abhor feeling helpless; but in this situation, helplessness pervades.

Sitting here, struggling to make sense of it all, I try to imagine what having polycystic kidney disease meant to Guillermo. How did he feel about having to deal with it? What kept him from facing his risk of renal failure? Did the thought of seeing the nephrologist make him feel sad, regretful, angry? Or afraid?

Beneath my sadness, I still feel angry at him for inflicting such pain on himself and his loved ones.

We're all only human, I remind myself. It's human to want to avoid looking at harsh realities. Facing them might be too painful, like looking directly into the sun.

I reflect that summoning up the courage to face reality also means taking responsibility for your actions--including your mistakes. We all make mistakes, and sometimes the consequences are more terrible than our worst imaginings.

Finally, unwillingly, I come to the heart of the matter: I must respect Guillermo's right to make decisions that are different from those I would make.

It's his life. They're his kidneys. This was his choice to make.

Like Guillermo's wife, daughter and other loved ones, I need to live with his choice and its implications for us all. Did he not love them enough to look after himself? The answer is that he did love them--enormously. But it seems he didn't have it within him to bear the pain of facing his illness.

I wish so bitterly that he'd chosen differently--but he had reasons for doing what he did, reasons that I must try to understand. Can I find compassion for the choice he made?

(Three days later, Guillermo died.)


About the author:

Suzanne Minor, a family physician, has cared for underserved communities in Miami-Dade County throughout her career. An alumna of the National Health Service Corps Program, she now works full-time at the Florida International University Herbert Wertheim College of Medicine. Her published works include Family Medicine pieces about her evolution as a physician-educator. "I have loved reading and writing from childhood. I love mentoring medical students and helping them to explore narrative medicine, from assignment to publication. I'm grateful for the chance to write about this experience, which led to my reconnecting with Sophie and Paola and enabled us to feel some closure and relief about Guillermo's death."

Story editor:

Diane Guernsey

Comments   

# Vicki Spuhler 2015-08-24 10:40
I enjoyed reading this post. It is one of the most challenging processes that we, as healthcare providers, must experience, that of accepting someone elses choices regarding their own health. Our focus is to "help" either by improving their current condition or assisting with their transition to acceptance of a chronic illness. As we watch their "family" left in the wake of those choices our emotions can easily bring us to anger and disappointment, and yet, it may be the only choice they feel able to make. It is never easy to find compassion for the choices that people make everyday that effect their own health and the lives of those around them. But it is our ability to reach out in compassion that will influence the type of provider we can become.
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# Vanessa Downing 2015-08-24 08:59
Stories like this illustrate how important it is to have behavioral health providers (like health psychologists) embedded in specialty medical care. Intervening with patients in the hospital and during outpatient visits with their specialists can make all the difference in their longer term outcomes.

Accepting life with a chronic illness is one of the most difficult -- and lonely -- things any of us will ever face. Chronic illness highlights our own guaranteed mortality, and all the other thousands of things we have no control over. Working with a psychologist or other medical specialty behavioral health counselor can help patients identify points of control and become empowered to be more intentional and purposeful directors of their own lives, even if that choice is to not engage in further treatment.
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# Phillipa 2015-08-23 17:36
Thank you Suzanne for your deeply moving comments. As someone who is currently watching my father die of the consequences of a renal transplant because of PKD (and who has inherited the condition as well), I see the situation slightly differently. My father's body accepted his donated kidney and has had an extra 12 years of life with it. Yet the drugs he is on to keep the kidney have caused havoc with his quality of life. He has no ears left from cancerous growths being removed. Ditto his left thumb. Every three to four months he has growth's removed - a constant reminder that he is on borrowed time. I see my father and then I see myself further down the disease progression. Will I follow the same path? I can't speak for Guillermo, but perhaps I can sympathise with his decision a little. It's devastating for his family, but maybe his quality of life was so compromised that Guillermo felt he couldn't continue. Perhaps it was the last choice he had in the face of his illness.
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# ellen diamond 2015-08-22 23:04
Having read Sara Ann's last post, I think the point she's making is that if a disorder called passive suicide included unsanctioned discontinuation of a life-saving treatment, this latter would trigger a response on the part of any doctor to call in a mental health provider to speak with the patient and determine the cause of the behavior. Depending on what he or she finds,i.e. a strong wish to die or an impairment in judgement brought on by great fear, medication, faulty kidney functioning or other cause, an immediate appropriate treatment plan should result. What's needed though is the patient's willingness to speak with the mental health provider. Short of forced confinement based on a doctor's belief there's a real danger of suicide, there's little else medical care can do.
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# Sara Ann 2015-08-23 08:36
Hi Ms. Diamond, passive suicidality isn't a disorder. It's one form of suicidal thinking/behavi or. Doctors are equipped to assess risk for suicide; at least they should be. There shouldn't be a need to call in a mental health professional for assessment. For treatment, yes, if that's indicated. But I feel every chronically ill or injured patient who is skipping life-saving or life-enhancing treatment should be screened -- by their existing medical provider -- for suicidal risk, and treated accordingly. When a patient lives with a QOL-diminishing chronic illness or injury for a long time, and suddenly starts skipping treatment, this shouldn't just be a red flag. It should be a siren call. That's my point. Thank you for joining the discussion.
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# Sara Ann 2015-08-22 09:03
This patient was passively suicidal. He missed a vital appointment or three or six. There is a lesson here: ALWAYS ask patients with chronic illness and/or injury whether they want their lives to be over. ALWAYS chase patients such as this one who miss appointments. Without going into a lot of my personal medical detail, I have great empathy for this guy. The temptation to which he succombed is in front of my face every single day, and there but for the grace of God go I. Each of my many doctors does his best to treat the one part of my body that holds their interest, but not one has addressed with me the emotional toll of living every day with disability and what I have to do to survive with that disability. Often what has to be done makes me feel different, isolated and defective. Just saying. And counseling would seem like an obviously good idea but I'm a survivor of abuse by a psychiatrist, so that's loaded. Just please be aware of all the suffering of people like him. Thanks.
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# ellen diamond 2015-08-22 15:57
As a chronic patient for 17 years, I’ve often seen that flash of disappointment and judgement before doctors settle their faces back into a blank. It’s not something that will be helped by tossing a label like passively suicidal at a patient. However well-intentione d, it can only widen the already chasmic gap between doctors and patients.

And look closely! It fits nearly all of us, and especially doctors. Wouldn’t we all be better off in the Himalayas, meditating, taking deep breaths of fresh air and getting plenty of sleep? How many of us are running there to do that! Instead of labeling me because your expectations are higher for me than for yourself, find ways to relate to me. As the wise author writer of this piece observed, we are all [equally] human!
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# Sara Ann 2015-08-22 17:09
I'm not sure what you are reacting to, Ms. Diamond. I'm not promoting the use of labels for the sake of labeling at all; I'm suggesting that someone who does not follow through on care that is absolutely necessarly to sustain their life may well have thoughts or feelings about ending their life. It's not a label, it's a state of mind that can result in life-threatenin g omission of medical treatment.
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# Pris Campbell 2015-08-22 06:54
Excellent article. It's hard to understand why a person would stop a treatment for a disease he knew was life threatening, but he did. I don't think he's alone in this. Many people stop treatments that could save their lives. Of the ones I know, they're not self-destructiv e...they just assume the problem won't catch up with them. It's a gamble, of sorts. My deepest condolences.
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# Sara Ann 2015-08-22 09:13
Quoting Pris Campbell:
Excellent article. It's hard to understand why a person would stop a treatment for a disease he knew was life threatening, but he did. I don't think he's alone in this. Many people stop treatments that could save their lives. Of the ones I know, they're not self-destructive...they just assume the problem won't catch up with them. It's a gamble, of sorts. My deepest condolences.

I beg to differ with you. A patient who stops a curative treatment for a life-threatenin g disease is a passively suicidal patient. And unlike most suicidal patients, you have to ask them to get this information, to find out how they feel about the quality of their life, and continuing to live with a reduced quality of life. They won't, for the most part, volunteer it because they may not even be fully conscious of their wish to have their lives -- their lives as they have been diminished by disability and wracked by pain -- over.
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# Dr Janelle Trees 2015-08-21 23:31
Thank you for writing this powerful and moving piece. You have teased out and articulated feelings I have had so many times. Appreciate your work and send love to you and Guillermo's family.
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