We Failed Her

The alarm sounds, a painful reminder that it’s my week to cover the ICU. I take off my favorite sweatshirt, stripping away its warmth and comfort. I quickly jump into and out of the scalding shower, racing to get ready. Making my way toward the kitchen, I roll my eyes at my teenage daughter who is eating ice cream and waffles for breakfast. Her ride waits out front but before she can escape, I get a rare hug, her wet hair cool as it brushes against my cheek. I spy her melting, unfinished breakfast and I shovel what’s left into my mouth. The cold vanilla ice cream and maple syrup drips down my chin. Wiping away the evidence of my indiscretion, I get into my jeep with the top down. The twenty-minute ride is a guilty pleasure, with the spring air cool across my face. The coffee in my hand warms me from the inside out as I make my way to work.

Mrs. Valentine’s family waits for me in the ICU. The overnight nurse has already filled me in on the evening’s events. The family has come to a unified decision and they have called friends and loved ones from near and far. Their mom has been on the ventilator for six days and continues to get worse. Her pneumonia and kidneys are the most urgent problems, leaving her dependent on a ventilator and dialysis. But underneath the surface, her lung cancer is the real culprit. What started as a time-limited trial to see if her lung infection could get better, had now run its course. The family knows we are no longer helping her to live; we are prolonging her death. This is not what she wanted.

With her family at her bedside, IV drips of morphine and ativan are adjusted, until her breathing is relaxed and unlabored. The restraints on her wrists that prevent her from pulling out IV’s and tubes are removed and the monitor is turned off, no beeps or flashing numbers to distract. The guardrails are pulled down and her hands are held by her tearful but resolute family, all at her bedside. The breathing tube is removed and exchanged for gentle humidified oxygen over her nose and mouth. The nurses continue their vigil, focusing now on her breathing, assuring it’s easy and peaceful. They watch her face, monitoring for tension in her brow or any other subtle signs of stress. Family friends drop in to offer support. The chaplain is nearby. And three hours later, as the time between breaths grows long, she takes her last breath.

Gone. Peacefully. Quietly.

In my ICU, this is a “good” death. Without shocks, chest compressions or drama. Her family at her bedside throughout.

Yet we failed her.

We could have done better. We should have done better.

We failed her in medical school. We spend countless hours in anatomy lab but only a few learning communication skills and palliative care.  We read books on diseases and their cures, but only a few handouts on how to comfort. Eager and enthusiastic future doctors are well prepared to treat sickness but ill equipped to face the challenges of managing death.

We failed her when too many residency programs did not actively introduce, teach, and model talking about goals of care. We teach residents how to engage patients with pointed queries on the presence or absence of signs and symptoms. But leave them unprepared to deal with the wide open responses to open ended questions about the dreams, goals and fears of patients facing their own mortality. We fail residents by not acknowledging the shame we feel when we cannot cure, and the distance that can create between us and our patients. But when we cannot cure, we can comfort. And we miss showing residents that when we feel most helpless, we can still impact our patients in powerful and meaningful ways as they move towards death

We failed her by not having mandatory palliative care consults concurrent with her cancer diagnosis. Studies have shown that palliative care does not necessarily hasten death, but often prolongs life with better quality.

We failed her when doctors did not stand up to the medical industrial complex. It is human nature to believe more of something is better than nothing. And big industry is more than happy to encourage more testing, imaging and treating. They distort marginal benefits while minimizing toxicities and side effects, monetizing patients’ optimism and hope, for the benefit of stockholders and CEOs.

We failed her as a society by avoiding difficult conversations. End of life discussions are the exception rather than the norm. Sports and politics, along with our smart phones, dominate dinnertime, making it easy to ignore issues of our mortality. By avoiding talking about death, we fail to discover what it means to live.

We failed her as her doctors. Had she and her family been armed with more information and more choices, she might have chosen a path quite different. Maybe, just maybe, she would have opted for the comfort of her home, instead of a cold sterile ICU. She could have been in her own bed, wearing her own sweatshirt, soft and warm, enjoying waffles and ice cream, with syrup dripping down her chin. Enjoying a hug from her daughter, with her wet hair brushing against her cheek. Feeling a spring breeze from the open window on her face, as she takes her last breath.

36 thoughts on “We Failed Her

  • Beautiful, respectful and inspired. Noted inspiration’s footprint as it came full circle to waffles and ice cream, opening the door, on many levels.

  • Thank you for a thoughtful post on such an important topic. Each time our attitudes and hesitations about death are addressed we come closer to widespread conversations about end-of-life issues. Someday (I hope), we’ll look back and wonder how and why we avoided it for so long.

    • Donna, thanks for taking the time to read. I hope in part by writing and sharing to be part of the process of making end of life discussions more comfortable and common.

  • Jeremy, I’m an old acquaintance/friend of your mom. I’ve been a subscriber to your blog for a while and am happy she showed me the way! While all the other “letters” have been beautifully written and emotionally charged, this one stands out. Perhaps because I’ve had the experience of watching family members go through what you’ve described…both at home and in hospital…and my attitude toward doctors and medicine in general (not a fan)…I’m so glad to know you, and I’m sure others like you, are out there. Thank you.

    • Jan, thanks for sharing a bit of your experiences. Hopefully medicine’s overall comfort and skill in handling end of life issues can improve with discussion and self-reflection. And earn back your trust in the process. -JT

  • Thank you for writing such a beautiful piece. Our son went to his death from metastatic melanoma at age 28. We were never told he was actively dying until he was receiving palliative sedation 2 hours before his death. We spent 6 hours of the last 24 hours of his life watching mindless TV because we were not kept informed of the severity of his illness. His sister boarded a plane for Pakistan that afternoon. His other sister was in Cancun on vacation. He had a right to know. We all had a right to know. I can not express in words how much additional pain and suffering the absence of this important conversation has caused the family in addition to what we were already facing. Holding back information does nothing to soften the blow. It only makes it worse, and it leads to a lifetime of grief and regret for the survivors left behind.

    • Linda,
      Thank you for sharing your story. In my experience patients and family’s want to know the truth as best as it can be known. It sounds as if the severity of your son’s cancer and health was not made clear. Hopefully as caregivers we take the opportunity in situations such as yours to self reflect to continue to improve to communicate as best we can. Hopefully some of the grief and regret you feel will diminish just a bit to allow more room and space for the good memories.

      Sincerely

      Jeremy

    • Dan thanks for sharing. I have thought a lot about what you told me of your families experience. NYT piece is on my reading list. Talk soon my friend…

      Topes

  • Success and failure are so much easier to judge from a distance, no? I feel that we were successful in having mom at home, but I think about little failures when I think too hard. Why did we wait so long for hospice? Why didn’t I ask her more questions and record the answers? Etc. You did “good,” and now you learn & share to do better.

    • Steph,
      Conceptually applying concepts of palliative care and hospice seems easy. Then there is the reality of carrying the plan out in the real world. Not an essay or a movie. It gets messy sometimes and I guess could be looked at as “failures”. I think it’s part of the process. I loved how our family came together during that difficult time to support your mom and each other.

  • Jeremy, this is one of your best posts to date. Thank you for sharing, and for calling on us all to do better. I sincerely hope you are still teaching, and leading the next generation by your wise and thoughtful example!
    The part about the warm coffee reminded me of our post call mornings on service: Coffee first!
    Write on, my friend! 👍🏼👊🏼👏🏼

    • Thanks Cathy. Personally I have come around to feel that “we” can set the bar higher than a “good” death in the ICU. Usually once they are in the ICU, it may be the best outcome that can be managed, but I am realizing how often I fail to take advantage of opportunities to inform/educate/ and spark conversation with patients. Reality is, there is not enough time in the day and emotional energy is not limitless. Not excuses, but needs to be acknoweledged if medical community is going to find real solutions. And yes….always coffee first..lol..

  • I think the other side to training health professionals about end-of-life issues is talking to patients about life and what makes living important to them personally. In thinking more about what brings meaning and enjoyment to our lives- be it ice cream and waffles and an outstanding cup of coffee for breakfast or being able to sit outside and enjoy the spring breeze- we are better able to balance how much medical intervention is “helpful” to an individual. If it won’t get you back to doing the things that make your life meaningful, is it worth it? Great piece. Thanks for sharing.

    • Thanks for taking the time to read. Agreed we need help start and cultivate these discussions for our patients. Young, old, sick, healthy!

  • Another great piece of writing. Each blog continues to put on paper so eloquently what so many of us feel.

    • Thanks LJ! I have to say, we have been lucky to work together in a group that values these discussions as much as we value being current in the care we deliver. Hope your weekend in the ICU is not too bad!

    • Sandy, thank you for reading. I have read and reread your comment and I am not sure what you mean. If you are comfortable explaining more, I’d appreciate.

  • My Dad passed away on February 27th at the age of 69. He was diagnosed with FTD (Frontotemporal dementia) almost 2 years prior. My Mom and I were his advocates. It was an uphill battle when we quickly realized that his diagnosis was one that many in the medical community had not dealt with first hand. Becoming an educator was now part of my job when advocating for my Dad. Our goals were to keep him safe, not fearful and the best quality of life for each stage he was in of this awful condition. No life saving measures. I cannot thank the caregivers enough that supported that approach. The nursing home staff hugged us when we needed it, encouraged us when we felt defeated and most of all gave us all the information needed to make decisions in those final days. This is a beautiful piece you have written and certainly resonates with me given my first hand experiences. Thank you.

    • Dawn Marie, What a wonderful gift to have given your father..To continue to advocate for him when he could not. It sounds like you and your mom truly connected with and were a team with his front line health care providers… all to the benefit of your dad. Thanks you for sharing your story!

  • This was a powerful read – thank you so much, Dr. Topin. Do you have any advice for aspiring doctors who want to learn how to better incorporate this thinking in their practice? I’m a med school applicant (as of this morning!), looking forward to hopefully doing hospice/palliative care someday, and it’s discouraging to see that med schools/residency programs don’t place emphasis on cultivating the discernment to recognize when too many interventions are pushed on the patient and when the focus should shift toward ensuring comfort.

    • Maria, congratulations on starting your path in medicine! Please don’t be so discouraged. I think there is a growing movement from within medicine but the outside community as well that there needs to be “more”. There are increasing voices from doctors and health care providers on end of life issues. Atul Gawande’s “Being Mortal”, Paul Kalinithi’s “When Breath Becomes Air”, Jessica Zitters “Extreme Measures” are all prompting important discussions. Those books are great places to start. Best of luck on your journey!!

      JT

  • As a nurse turned patient two years ago after being diagnosed with a brain tumor, I read your post with interest. Your patient had a peaceful death and her family and friends go to be a part of it. They saw how respecting one’s wishes can lead to a peaceful death. During my chemo treatment, a nurse came in and asked if I had an advanced directive. I told her I did but wanted to re-look at it. At the time, I did not know if the chemo was going to work and if it did not, what I wanted to have done. She did not sit down with me, hold my hand or help me understand my choices. This is where WE as healthcare professionals have to do better. Showing empathy, compassion and help people understand their choices. Stopping chemo and allow natural death is a choice. From a patient’s view, I would tell my healthcare peers not be afraid, we (and out families) want to know all the options.

    • Anne, there is such variable comfort and experience talking about end-of-life, goals of care issues amongst people in healthcare. Hopefully by writing, conversing, sharing our stories we can help with making more people less afraid to talk. Thank you for sharing your story.

      JT

  • This was beautiful to read. So often we try to avoid the conversations that need to be had. Even in nursing we still have a hard time with the “death and dying” conversation.

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