Why It Matters
To improve care at the end of life, we must learn what matters most to our patients. But to understand our own biases, we must also identify what matters most to us as health care professionals.
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End-of-Life Care: When We Don't Want What Our Patients Want

By Lauge Sokol-Hessner | Friday, January 12, 2018
When We Don't Want What Our Patients Want

As I walked in the room, I noticed it immediately: Norman was worse. The recurrent invasive cancer in his neck was impairing the drainage of fluid from his face, making it difficult for him to turn his head, and it had progressed overnight. Yet despite his alarming appearance, he seemed calm.

There were no more cancer-specific treatment options: the surgeons had declined to operate again; he had received maximum dose radiation; and the risks of chemotherapy outweighed any potential benefits. His pain required doses of opioids high enough that he often fell asleep in the middle of conversations. Because of his tracheostomy, Norman communicated by writing. Sandra, his wife of 63 years, spent two hours each day traveling to and from the hospital to keep him company.

As he worsened, I wondered why Norman had not chosen hospice or to forgo attempts at resuscitation. He was going to die from his cancer, but unless he changed his mind, I feared that one day he would develop pneumonia, transfer to the ICU, or suffer the trauma of invasive catheters or CPR. I worried about the judgment of my colleagues who might feel I had neglected my duties and failed to “get a DNAR” or enroll him in hospice.

When I learned that Norman was hoping for a miracle, I asked him if he had considered what he might do if one didn’t occur. He wrote, “I'll just have to deal with the cards I’m dealt.” In response, I found myself speaking bluntly. When Sandra asked about a second opinion, or about seeing the surgeon again, I said, “I don’t think those will help. And I’m worried that if he gets sicker, he might receive treatments that could cause more harm than good.”

I tried persuading them to reconsider hospice, emphasizing the positives: he could continue to receive care closer to home. But they wanted more time to think about it. I rotated off service and exhorted my oncoming colleague to readdress the issue.

Instead, a few days later, Norman was transferred to the intensive care unit for atrial fibrillation and acute respiratory distress. He stabilized, declined hospice again, and was discharged to a rehab, in accordance with his wishes.

Then one day, he was found unresponsive. CPR was begun, and he was rushed to a local hospital, where he was pronounced dead.

When I heard, the slap of failure stung. Could I have done better? Should I have pushed them to agree to a DNAR order? What could I have done to help them see the benefits of hospice? Would his family or others judge me and our healthcare system for providing suboptimal end-of-life care?

As it turned out, we had been judged, just not in the way I had feared. A palliative care physician who had followed Norman called Sandra to offer his condolences, and she reflected on her husband’s care:

“He’s at peace now, and we should be happy for that, because he was suffering for a very long time, and there was nothing anybody could do to stop the cancer from progressing. He didn’t have his miracle, but he sure was determined. Well, I was married to him, and that’s the way he was, always very determined. It was a sad ending for someone who was so very, very loved. And definitely, absolutely, he knew he was very, very loved. I kept reminding him of that and Linda, his daughter, kept reminding him of that…[the hospital spiritual care professional] called earlier, that was so nice, and she gave me the address to use so I can send a card to the hospital staff thanking them for taking such good care of Normy.”

As I read her feedback, it dawned on me: Norman’s choice was not his failure of understanding, or our failure to be convincing. Instead, it was a choice to receive exactly the end-of-life care he wanted: keeping his mind engaged, spending time with Sandra, and basking in the love that surrounded him for as long as possible. For Norman, declining an attempt at resuscitation or enrolling in hospice would have been in direct conflict with his determined nature. Forcing those choices on him would have been disrespectful.

We often hear that good end-of-life care means being at home, on hospice, or declining attempts at resuscitation. Indeed, at a population level, those choices seem to be correlated with better end-of-life experiences, but at an individual patient and family level, it is more complex.

To improve care at the end of life, we must learn what matters most to our patients. What are their goals, values, preferences? What are their hopes and fears? What tradeoffs would they be willing to make for the chance of more time?

But learning what matters most to our patients isn’t enough; we must also learn about what matters most to us as health care professionals. When we assume our patients and their families share our values and that we know what is “right” for them, we impair our ability to be reliably respectful.

It is impossible to rid ourselves of all biases, as that would require relinquishing our own goals, values, and preferences. Instead, we must discover and understand our biases so that we can remain centered on the patient. Why did I feel so strongly about hospice and a DNAR order? What were my goals and values? What harms did I anticipate, and how did they compare to the harms Norman and Sandra anticipated?

Now, when making decisions, I ask different questions: How can I become more aware of the patient’s and family’s perspective? How can I ensure that they have the opportunity to make informed decisions? How can I avoid imposing my values?

Perhaps most importantly, I find myself reframing my definition of success in end-of-life care: Success is when I am confident that the patient’s care was consistently aligned with whatever mattered most to him or her, regardless of whether it fit the stereotype of “good end-of-life care.”

Lauge Sokol-Hessner, MD, is Assistant Professor of Medicine and Associate Director of Inpatient Quality at the Beth Israel Deaconess Medical Center in Boston, MA, as well as faculty for The Conversation Project at the Institute for Healthcare Improvement. He would like to thank the patient’s wife, Sandra, and daughter, Linda, for allowing him to share Norman’s story.

Dr. Sokol-Hessner is co-author of the IHI White Paper, “Conversation Ready”: A Framework for Improving End-of-Life Care.

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