Wednesday, January 1, 2014

El Momento

In my work as a hospice and palliative medicine physician, I've had occasion to teach some younger colleagues -- medical students and residents -- a few things about how to talk with patients and families. To us insiders, the medical world -- beeping alarms, the whooshing of a ventilator, endless tests -- feels perfectly normal. But to our patients and their loved ones, what we take for granted can be terrifying. Add to that the high income of many doctors and our natural tendency as people to be around others of similar social class. This creates a gap, I've always told my students, between physicians and patients. Not that doctors should pretend to be other than they are, but I've found it's always a good idea to look for a way to reduce the social distance. This breaks the ice and, I've found, makes it easier for patients and families to hear the message. I always comment, for example, when someone in the room is wearing the baseball cap of my favorite team or when their accent is from the part of the country I grew up in. With my Spanish-speaking patients, one way I reduce the social distance is by making fun of my own inability to speak their language. "Mi español es muy mal," I tell them -- my Spanish is very bad. They usually laugh -- because my Spanish is very bad -- and we go on with the help of an interpreter.

Recently our team met Nina, her husband Juan, and many members of her extended family -- most of whom only spoke Spanish. Nina was on dialysis and had terrible heart disease. They'd never discussed her preferences in the event she became very sick. Nina was found down in her home, unconscious and without a pulse. The family called 911, the paramedics got her heart going again, and our team met her in the ICU a couple of days after admission. She was on a ventilator, needing pressors -- drugs that maintain a blood pressure -- and not waking up. Nor would she ever wake up, the neurologist said.

Over the course of several days, my team and I talked with Juan and other members of his family. Because mi español es muy mal, an interpreter helped us. Juan and his father, always in attendance at the bedside, kept changing the baseball teams whose caps they wore. So our conversations usually started in a light-hearted way about the playoffs and the World Series, and then moved on to Nina's condition. We used our time to teach Juan about the trade-offs in using pressors, the unique sensitivity of the brain to oxygen deprivation, and other medical facts. We'd judged that the family would need some time to get used to the idea that Nina was not coming back.

There was one more EEG done at the family's request, which showed the same result. So it was time for the final family meeting. Juan and other family members were there, as were my team, a Spanish interpreter, and the ICU folks who'd been caring for Nina. The ICU doctor summarized the situation and answered questions from the family. But there was reluctance, understandably, to withdraw the ventilator and allow Nina to complete the dying process that had begun when she collapsed at home. I thought I'd reduced the social distance enough with Juan to try a more personal approach:

"Ud. sabe que mi español es muy mal. You know that my Spanish is very bad." Juan smiled. "Pero quiero decir algo. But I want to say something." Gesturing to the medical team and then to Juan and his extended family, I said, "Tenemos mucho dolor en nuestros corazones para ustedes. We all have much pain in our hearts for all of you." And then I held up my left hand so he could see my wedding ring. "Yo soy un esposo. Ud. es un esposo. I am a husband," I said. "You are a husband. Ahora es el momento de decir adiós. Now is the time to say good-bye."

There were tears, as there always are, and a short discussion among the family members in Spanish. Juan looked at me and nodded in agreement. The chaplain was called, and -- using a protocol that ensures the absence of air hunger or sense of suffocation -- we withdrew the ventilator. Nina was pronounced dead within the hour.

As I write this post, there is still news about the conflict between the parents of a brain-dead child and a hospital in California. I don't know any details that haven't been reported, but I wonder if some of the disagreement might have arisen because of the social gap between the health care team and the family. Letting go is hard, but it has to be a little easier if you feel the doctors and nurses and others understand you -- in other words, if the social distance has been reduced. Easier is better, it seems to me, because for every one of us there is a time to say good-bye.


  1. You've made me cry yet again.
    Off I go to see patients in our palliative care clinic, and then admit someone to hospice.
    Thanks for sharing your stories.

  2. Wonderfully said. As always.

  3. Thank you so much for this beautiful blog. I'm a psychiatrist considering palliative care training. Your blog is helpful in getting a sense of what such a career could be like. Could you share some stories from your hospice experience. Do you have the time there to have such heartfelt interactions?

    1. I appreciate your kind words. Some of the patients I've written about were enrolled in hospice (best thought of as a subset of palliative care), but since I now work mostly in the hospital setting, my more recent posts generally are not about hospice patients per se. I certainly believe that, regardless of the payment mechanism, working with the seriously ill and the dying provides many opportunities for heartfelt interactions. It's the patient, the family, and the situation that matter -- not whether one has accessed the hospice benefit in Medicare or other insurance.

    2. I have a question. I am an RN pursuing my BSN and people are talking about patients in Hospice not being DNR. I have worked hospice in the past and the patient's did have to be 'no codes", can you clear this up for me? Thank you & also thank you for what you do.

    3. This gets a little complicated. As I understand the law, a hospice may not require the patient to be DNR as a condition of enrollment. If, however, the hospice runs a freestanding inpatient facility -- a hospice house -- the hospice is not required to have a crash cart or train its staff in cardiac life support. Naturally the hospice has to inform the patient of that. Functionally, then, the patient would become DNR when admitted to the inpatient level of care. While an inpatient, the patient theoretically would have the right to call 911 and be transported from the hospice house to a hospital (this actually happened a couple of times when I was in training). Calling 911, either from home or a hospice house, is taken by most hospices to mean that the patient no longer desires hospice care. So hospices usually pursue what's called a revocation -- a statement by the patient that he or she is dropping out of hospice and wants to return to regular Medicare or other insurance.

      I would argue that a patient who otherwise wants hospice but who still wants to be "full code" needs to think more about his or her true goals.

  4. I have also used my very bad Spanish to attempt to break down social barriers. I am an engineering professor at a university and I have taken students to work in rural villages in Central America. Being "gringo", being educated, being an engineer, and being a professor, all put distance between me and the folks with which we are trying to work. It helped me to bring a student who was fluent in both Spanish and English who could translate my "Spanish" into something they could understand sometimes! At any rate, I found that if i could get them to laugh at me (in a good way) that it helped us become friends.

    I also recently wrote a blog post about my wife's experience with her mother in hospice care, in case you are interested: That was really beautiful. Thanks for sharing the perspective from the caregiver's side. It's not something I know much about. My wife was very much blessed by her mother's hospice care, from the patient side, of course. I wrote about it if you're interested. That was really beautiful. Thanks for sharing the perspective from the caregiver's side. It's not something I know much about. My wife was very much blessed by her mother's hospice care, from the patient side, of course. I wrote about it if you're interested.

  5. wow i can only imagine how tough it would be to discuss with someone these topics. It seems though that you are a really good people person and have the ability to ease the tension of those around you. We need more people like this in the health services industry.


  6. Thank you for your post. You couldn't be more correct about the gap between health care professionals and their patients. It's doctors like you who make the difference in reaching out to people. Sometimes they just need to know that you're human too.

  7. You have such a golden heart for your patients. Keep it up.Newton@ Kenyatta University School of Medicine