Are end-of-life decisions the doctor’s or the patient’s?

asco-logoI remember meeting this patient the first time. I had just started in a new position, and she was one of my first consults. Tracey* had an aggressive sex-cord tumor of the ovary that had relapsed soon after surgery, grown through primary chemotherapy and grew once more after secondary surgery and “adjuvant” pelvic radiation. I knew the prognosis wasn’t good. But Tracey was only 23, and as I listened, her story broke my heart. She had been in college when she developed abdominal pain and swelling. After her diagnosis, she had to withdraw. She had wanted to return, but with each month that passed, college faded. She’d had a boyfriend too, but that relationship had ended. She had played soccer, but now was physically unable. So much loss at such a young age.

Although I worried it would be futile, we proceeded with therapy, not for a goal of remission, just for control. But, as before, treatment had no impact. We tried other regimens, but her disease progressed quickly. We decided to try Phase I clinical trials. Her first trial resulted in stable disease for the first time, but it came with such serious side effects she could not continue therapy. By the time she returned to see me for discussions on next lines of therapy, she was cachectic — rail thin and unable to walk. She suffered from unrelenting nausea and extreme fatigue. Her abdomen was distended and her extremities swollen.

My only thought was that she was dying.

“How are you doing?” I asked her, in an attempt to feel out where she was psychologically.

“Well, I’m alive. So that’s a plus. My friends don’t come around anymore — I guess I’m not that fun. But, I have my dog to keep me company, and my mom is there for me. It sucks, but it’s better than the alternative, right? I refuse to feel sorry for myself. And I refuse to stop fighting.”

“I have to be honest with you,” I said, steeling myself for what needed to be done. “I think you’re dying, and I don’t think there’s anything I can do about it.”

I half-expected her to break down in tears, or scream at how unfair life was. But, instead, she looked at me and spoke with clarity. “I don’t accept what you’re saying. You might think my life isn’t good or worth saving, but it’s my life and I’ll take it, no matter what it looks like. Do you understand? So, if you can’t help me, then I will find someone who can.”

I suddenly realized that in my assessment, I assumed she had valued quality of life. After all, it is what we have been trained to think about during treatment decisions. We can no longer be concerned just with response rates and survival advantages because we know patients want more — more life, and fewer trade-offs. They want to survive as people, with as much of themselves intact as possible.

Yet, here was Tracey, young and dying, and what she clearly wanted was time. No matter what kind of time that was. I knew that treatment would be futile and that there was no likelihood that anything I did would prolong her life compared to supportive care alone. However, to her, to do nothing to treat the cancer was unacceptable. We ended the visit with both of us promising to think about what the other had said.

Soon after she was hospitalized with complications of her cancer. Before this, we talked of end-of-life wishes; she had always requested full supportive measures. Her decisions during the initial days of her admission were no different: “Do everything.”

I felt compelled to change her mind. I met with her on her first day in house. I explained the gravity of the situation, the likelihood that putting her on life support would be futile and the fear (on my part) she would die in the intensive care unit. She insisted on full support. Our palliative care team (who had also followed her) talked about it too, as did her primary gynecologic oncologist. Tracey’s answers never changed: “I want everything done.” Although we gently tried to re-approach the issue — individually and together —
she ultimately asked us to stop asking her.

“I don’t want to die,” she told me. “I want you to do everything you can. Now, I refuse to have this discussion again, and I wish you and the rest of my team would stop asking me.”

We did. We kept her listed as a “full code,” and each day we rendered the care she required. Still, we all knew she was dying, even if she did not want to face it, and this took its toll on all of us involved in her care: her nurse, her resident team, my fellow and, quite frankly, on me. How can we do what she wants when we all felt it would only result in harm?

A few days later, her nurse and my fellow stopped me. They feared Tracey was close to death and were scared that one day she would be found without a pulse and a code called. “Never in all my years of nursing have I felt a code would be so wrong and inhumane,” her nurse said.

I knew speaking with Tracey would not change her mind. But, I also agreed with my team. “Let’s ask for an ethics consult,” I told them. “I think, right now, we are all torn between doing what the patient wants — and she has been crystal clear about her wishes — and doing what we think we should do, to avoid inflicting pain and suffering. I admit it —I too feel very uncomfortable, and now’s the time to ask for help.”

Our hospital ethics team came to the floor soon after. They reviewed Tracey’s medical records in their entirety, constructing a timeline from diagnosis to present, and talked with multiple members of our treatment team to get a better sense of the issues. After their review, they told us what we knew, but could not verbalize appropriately.

“The medical care of this critically ill patient must continue to be based in compassion. Still, as professionals, we have an ethical duty to refrain from offering interventions that will result in harm, especially in the absence of medical benefits, and this includes cardiopulmonary resuscitation (CPR) in this terminally ill patient at the end of her young life. As long as there is consensus among her clinicians that CPR is not appropriate, it should not be offered. Our duty to our patients, first and foremost, was to do no harm”.

We had to tell Tracey CPR could not be provided. Each of us read their note, and we each felt a sense of relief. What we wanted for her was not only to avoid futile procedures but to provide the best care we could at the end of her life. We were ethically obligated to do so.

At the end of the day, I met with my patient, alongside her friends and family, her nurse, and my fellow. Together we reviewed the difficulty of the situation and where things stood.

“I know you don’t want to die,” I said, “and I am so sorry things have gotten to this point. I wished for so much better for you, not to see you like this. But, as your oncologist, I think it’s time to stop, because your body is giving up, and you are dying. I speak not only for myself, but for the entire team, and I wanted to be the one to say it.”

“I know you think that way,” she told me. “You might even be right, but I will never stop fighting.”

“Well,” I continued, “none of us want you to die, and certainly, none of us want you to stop living. We have heard your wishes clearly — that you want time, no matter the quality of your life. We get it. But, we have a duty as your doctors and nurses to provide care that is also appropriate and will spare you from harm, especially if, in the end, it won’t save your life.”

She was silent as I talked, occasionally glancing around the room.

“We will continue to care for you here because I am not sure when or if you will make it out of this hospital. But, I need to tell you, we cannot resuscitate you if you were to stop breathing or your heart were to stop. It would not be helpful to you, and the overwhelming odds are that it would seriously harm you. We have made you DNR and will not call a code if you were to have a life-ending event.”

She asked questions of us, and we explained our position, including the reasons why we could not code her. Her anger at the start of our conversation gave way to shock, but at the end of our talk, she seemed resigned to this decision, and her family looked resigned to it as well.

“I will promise you that we will not do anything to hasten your death. We will do what we can to stabilize you, to take away pain, and to make sure you are comfortable. I still hope we can get you home. You are our patient, and we will continue to treat you to the best of our ability.”

“Thank you,” she said. “Now, I’d like all of you to get out.”

I wish I was surprised by that, but I was not. To say it was an easy conversation would be a lie. But, it was necessary. Ultimately she was discharged to a skilled nursing facility — she was too weak to go to rehabilitation or to go home. Four days later I received word that she had died in her sleep and the news filled me with sadness. But if I am to be honest, I also felt relief. Not because we were right, but because her suffering was over.

* Name and details changed for patient privacy.

Don S. Dizon is an oncologist who blogs at ASCO Connection.  

Image credit: Shutterstock.com

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