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I saved an old man’s life – he didn’t want it

I saved an old man’s life – he didn’t want it

The dilemma for the critical-care team was not uncommon: An elderly patient with a life-threatening illness and in severe pain, not understanding the nature of his situation. A decision needing to be made about how aggressive to be. A doctor trying to convince the patient to pursue a rational approach, one based on understanding the limits and capabilities of life-supporting interventions.

This situation plays out in emergency rooms and intensive care units hundreds of times a day. But two factors made this incident unique. First, this patient — struggling to breathe, battling low blood pressure and in tremendous pain — was my wife’s grandfather. Second, the doctor recommending aggressive measures, contrary to the patient’s advance directives, was I.

Herb Lee, a healthy, independent 87-year-old, had gone out to dinner. Something must have been wrong with the food because he vomited all night long. In the emergency room the next morning, doctors diagnosed him with severe shock and kidney failure from severe pneumonia. (He had aspirated some material into his lung.) His breathing was labored, his oxygen was low and his pulse was fast and weak. But Herb was unable to process any of this. Sciatica pain down his lower back and leg had become excruciating from lying on a hospital gurney, and the only thing he wanted was pain medicine. And he wanted it now. But none was forthcoming, given his tenuous blood pressure and marginal breathing.

Before this, Herb had been clear about treatment if he ended up in a hospital. After watching his wife battle metastatic cancer years ago, he knew what he did and did not want: No life support. No breathing machines.

This left Herb and his doctors in a bind. The medical team at the ER wanted to treat Herb’s pneumonia and sepsis. But antibiotics take time, often 48 hours, before they have an effect, and patients often get worse before they get better. The pain medication he was desperately calling for was out of the question, as it would further lower his blood pressure and impair his breathing.

The medical team was failing Herb on all fronts. Not only were they not giving him the best chance to survive, but allowing him to continue on in significant pain while struggling to breathe was unacceptable. He was in no condition to make complex life-or-death decisions.

So my wife’s family looked to me, a young internist in the second year of specialized pulmonary and critical care training, and a moonlighter in that same ICU, to help make decisions.

What do you do when you disagree medically with a patient on matters of life and death? When there is no ability to have a thoughtful, patient, nuanced conversation over life support? For Herb, was it a “hard no” to any intubation? Were two days okay if there was a high likelihood of recovery? Or was even one day too much?

When doctors disagree with patients and families, it is usually the family choosing aggressive care in the face of overwhelming illness even though the benefits of life support are negligible or nonexistent. It gives a reprieve of sorts, allowing for further discussion. But what if it’s the reverse? What if the patient’s decision for no intervention leads to a potentially premature or unnecessary death from a treatable illness? What if a patient’s limits were stated without ever considering the current context? And what if this is your own family member writhing in pain, struggling to breathe?

We often talk about decisions of life and death, of aggressive care or comfort, of full “code” — do everything possible — vs. do not resuscitate/do not insert a breathing tube. One or the other. Binary options. But in real life, applying these decisions can get messy. There is nuance and context and uncertainty.

And what happens when, in these shades of gray, in this fog, you disagree with your patient? What if you are a knowledgeable critical-care doctor, and it’s your family member? If you choose to treat, you take away his autonomy and right of determination. If you choose to limit care, you are choosing an irreversible path to death and a future full of what-ifs. What do you choose when you are in the fog?

With Herb, I chose to treat, not to limit. I chose paternalism over autonomy. I chose a time-limited trial of life support over a morphine drip. I chose not to be the grandson-in-law who made the last decision leading to Herb’s death. He had pneumonia. As a doctor, I knew it was treatable. Reversible. Curable.

And so a breathing tube was placed. Once his breathing and blood pressure were stabilized, morphine was administered to treat his pain. We bought some time to allow antibiotics and his immune system to turn the tide on his pneumonia and sepsis. At 48 hours, he made enough progress to push forward another day. The breathing tube was removed 24 hours later, and he was able to leave the ICU shortly thereafter. He avoided most, if not all, of the potential complications and pitfalls that often plague patients in the ICU. A week on the regular medical floor was followed by a transfer to a nursing facility. Within six weeks, Herb was back home.

In my world of critical care, this is a win. It does not get much better than halting the progress of a life-threatening illness, supporting the body while it heals and nursing the patient through a hospitalization to an ultimate return home.

Over the following months, Herb would see another great-grandchild born and celebrate family birthdays. And at one of those dinners, sitting next to Herb, I took the opportunity to finally ask:

“Herb, I made the right choice, right? Overriding your ‘do not resuscitate’ order?”

He looked at me and simply said, “I wouldn’t want to go through that again.”

He told me of the countless sleepless nights, lying in the bed, scared, confused, not knowing when light would finally come to end his darkness. It was hell, and not one he wanted repeated. If he could do it over again, he said, it would be no. No breathing tube. No life support.

I was shaken. What does it mean when an unequivocal win in my world is not a win in the eyes of the person for whom it matters most?

The intersection of critical illness, advance directives and end-of-life decisions is an uncomfortable place. It is hard to talk about these issues when in good health, much less in sickness. But we must run toward — and throw ourselves into — the discomfort. We need to talk to our family and friends and share what it is that makes life worth living — and when it’s not. We need to explore what “quality of life” means for each of us. By doing so, we inject some much-needed light into the darkness and the fog, and help bring clarity when it’s needed most.

A few months later, Herb developed another severe pneumonia. There were no tense conversations, no anxious looks among family. There was light where before it had been dark. And as we focused on Herb’s comfort, that light remained. He died a few days later in the hospital, with the palliative assistance of hospice.

It has been more than 13 years since Herb passed away. Over that time, I have been involved in countless frantic discussions with patients and their families about goals of care in the midst of critical illness. It’s never easy, but because families often ask me what to do, I share with them Herb’s story. And by doing so, he continues to help shed light when it’s needed most and to help determine what a “win” means for each of us.

This post was originally published in the Washington Post by Dr. Jeremy Topin, a board certified pulmonary and critical care physician. He provides care and helps manage the ICU at Advocate Lutheran General Hospital in Park Ridge, Ill. along with others in his practice, Northwest Pulmonary Associates.

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19 Comments

  1. Dr. Topin,

    Illustrating what decision is right to be taken at critical moments similar to above in day to day working atmosphere in a hospital will enable physicians to interact with the family as well as the patient and give them the right choice.

    Thanks
    James K John RRT-ACCS
    Respiratory Therapist, LGH

  2. Margaret Carr PT, MBA August 11, 2017 at 10:42 am · Reply

    I loved this story! It illustrates the difficulty those in restorative medicine often face when they know that what they can offer in the way of treatment or intervention may not be what the patient or family want. We in healthcare must be trained to listen closely to patients, to pick up clues of what their desires, goals, and wishes are, and honor them by developing care plans that are in alignment with what they want .

    • Dr. Jeremy Topin

      Margaret,

      Thanks for reading and commenting. I truly do want to honor all my patients wishes, advance directives. But I also fear assuming their wishes applied in a scenario they had not envisioned.
      Hope to encourage more meaningful conversations amongst friends and loved ones.

  3. Isn’t there a huge ethical issue involved with you being part of his medical care when you are closely related to him? Were there no other doctors available so you could recuse yourself and simply be there as a family member, not as a medical professional?

  4. Dr. Jeremy Topin

    Dienne, Thanks for reading and for your question.

    I actually was not a treating physician. I was a moonlighter at the hospital and knew the staff but I was not part of the care team for my wife’s grandfather. I was asked by the family to help guide them in the decision making process.

  5. I look at the relationship with between you and your wife’s grandfather a little differently. First, asking the question of the decision after the emergency is over gave the grandfather the opportunity to clarify his directives. His life and experience were private to him and drove his decision; and it seems he had a very clear decision. But clarity was needed for those around him, including his family. Second, it gave you, the young internist, insight into why someone might make a decision. It is a very interesting decision process. When faced with these decision we should all be thoughtful. It sounds as if you were thoughtful of both your family and your profession.

  6. Dr. Topin-
    Thanks so much for sharing your story. I wish I had read it and had the chance to share and discuss it with my grandmother before she passed in February. Family also turned to me to guide and help with decision making. Your story would have been helpful to illustrate this point: most times it’s not what you see on TV and context and nuance end up playing a huge role in decisions. I will use this story to open conversations about the topic of end-of-life decisions with other family members. You are right, a “win” is different for all of us.
    Thanks for sharing!-

  7. Dr Tobin spoke of binary choices vs nuanced situations. One he left out was the choice of following the patient’s directives or interjecting his own self-will, regardless of his knowledge, skill, and training. He was a young, and I presume, relatively inexperienced doctor. He probably didn’t have the wisdom of his 87 year old grandfather-in-law. This man might also have been yearning to be reunited with his wife. Was that taken into account? Life or death are not win or lose situations. I am not a medical person, but I am being treated by a variety of doctors for chronic medical situations I have. I would hope that the directives I have established by followed to the letter by any attending doctors I may have, and not be treated by what they think is best for me, but by the decisions I have made that I think right for me.

  8. I have infomed my family that I don’t want resuscitation, no tubes down my throat. I watched my mother go through this. Yes, it “saved ” her life. She was mentally incapacitated and lived several months longer in a skilled nursing. This is not for me.l’d rather die.

  9. Dear Dr Topin,
    Thank you for your article. It has touched my heart and has given me a greater respect for the medical profession and the tough decisions they need to make. I went through difficult end of care decisions with the man I called my father. He had decided to put on a DNR braclet after a very similar situation. While not being a blood family member, I loved him as my own father since I was young. I completely respected his decision while not wanting him to do it. We had had many conversations about death and I understood his reasons for not wanting to continue on the path of life.
    When is “enough is enough” in our life saving medical care? If someone has faith in a better afterlife, they may be ready to say “see you a little later” to those who are living and enjoy a reunion with those who have gone before them. Life may not hold many pleasures for them anymore. They also may be ready to meet their creator, savior and Lord. Just something to keep in mind. I will pass on and share your article with my loved ones. God Bless you, Laurie

  10. I asked my mother the same question. She was grateful for the additional time. It is truly a difficult situation.

  11. carol a. sanders August 12, 2017 at 9:47 pm · Reply

    what I took out of it, was his fear of darkness. I need to have the tv on, even when I sleep, and I have listed that in my will, and told my children. if I wake up, I want to be entertained, not left alone with my (sometimes) dark thoughts. it also makes you feel that you are not alone in the dark. Carol

  12. Jeremy,
    Thank you for sharing your Grandfather’s story. I have a rare Vascular Condition, and a DNR…which I have had since my early 30’s. Hospital personnel routinely try to “talk me round” rarely understanding that at 49, I know EXACTLY what I am trying to avoid. I completely understand your position as a Physician, and yet as a patient I need the security of knowing “My Team” will be on my side…even if that means simply offering pain medication and easing my passing! I know you are a better Doctor for having had this very personal experience and I thank you for sharing it with all of us!!
    This crystallizes why it is so important to have these discussions early and often, and to keep a detailed advanced directive on file, and on hand!! Thank you Dr. Tobin!!
    Best,
    Roxy

  13. This article so clearly hit home as we too struggled with my Fathers last wishes. I completely agree that it gets so grey. It is so hard to make such critical decisions on a moments notice but that is often what it comes down to. The choice between a chance at life and almost certain death. My father was very clear and I believe he knew it would come down to this. I think we all feel very good that we followed his wishes and opted for a peaceful end that came within hours. The hard part was living without him.

  14. Thanks Dr. Topin for the share.
    My father lived with me. I or my wife took him to our family doctor. Our Dr. worked with many older patients. One day he asked me if we have my fathers medical will. After he talked to us, we prepared one with my father decision.
    One time we were at the airport traveling out of country. My father collapsed at the gate. One moment we were excited traveling move and the next moment we were looking for medical help. There were a few medical professionals who were traveling from the same gate, and they came to help. Soon Ambulance rolled. And here instead of flying overseas, we were going in an ambulance to the near by hospital. It just happened so fast. While in ambulance i had a few minutes to recollect and called our doctor. He told me to hand over the phone to the personals in ambulance who was close to me. After a brief chat, he was shouting DNR to his college.
    I forgot all about it. Before we reached the hospital, he was traveling way far away.
    My older brother is a doctor, did not like the decision. He argued with his friend and our medical doctor afterwards. But my fathers will prevailed. At 83 he has done enough, seen enough, i am sure he is resting in his final resting place. I was at peace, knowing what he wanted.

  15. Patricia O'Dea-Evans, MS, BSN, RN August 14, 2017 at 6:08 pm · Reply

    Thanks for sharing your story. It does help to illustrate the complexity of patients having choices in care decisions. As important as it is, it is often not discussed enough to have clarity and agreement among family members. As healthcare team we need to be listening and informing then documenting with them the care plan they choose. Even if it is not what we would have chosen as best for them.

    Acute illness that can be treated is often seen as an exception to the plan and having that follow-up conversation was so important. You did that out of love.

  16. David Deitsch, RN, MCHES August 18, 2017 at 4:19 pm · Reply

    Doctor, thank you for your sensitive and revealing account of this very difficult time in your family’s life. Having worked in ICU, I often saw patients and families who had never thought their end of life choices through, or did so with inadequate understanding of the complexities of these painful decisions. It is easy to say, “I don’t want to die hooked up to one of those breathing machines!” But what about a breathing tube for two days, without a ventilator? What if there is a good chance that you will not die, but get better if ventilated? “Oh, I don’t know.” Or, “I don’t want a bunch IVs in my body!” O.K., but how many are “a bunch”? And, what if you only need intravenous fluids to prevent kidney failure that will make you more miserable? Can we do that for you? “Oh, I don’t know. I never thought about that.”

    I urge individuals and families to educate themselves a little bit, and discuss the details of their choices with an experienced medical professional before a crisis. Nurses working in hospice care can be tremendously helpful. So can your physician (if he or she has the time). These are complicated decisions that are best made before a crisis, and with more information than most patients and families get. And this lack of advanced information makes what will inevitably be a painful decision much more painful.

  17. As I have both MS & COPD (the COPD being the worse of the two right now), I found thiz article of great interest. I. am 62 & have my Advanced Directives in place. I relate closely with the patient in this tale. I just want to go peacefully & painlessly. if my creator grants my wish I will just drop or go in my sleep. I’m tired & know that here’s a limit on life. My life is already greatly curtailed by my illness…you loose a liot of the ” joyeux de vivre” when you have a chronic illness and are unable ti do the things you love & enjoy. It’s hard to understand the other side of the problem when you are not walking in their shoes and that’s why this gentleman said he would not choose to go through it again…

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About the Author

Dr. Jeremy Topin
Dr. Jeremy Topin

Dr. Jeremy Topin is a board certified pulmonary and critical care physician. He provides care and helps manage the ICU at Advocate Lutheran General Hospital in Park Ridge, Ill.

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