End-of-Life Care: Helping Patients Make the Hard Decisions

“Benzel had a way of looking at people that let them know he was really looking at them,” wrote surgeon-author Atul Gawande, MD, in his internationally celebrated bestseller, Being Mortal.

He was referring to Cleveland Clinic neurosurgeon Edward Benzel, MD, who offered far more than treatment to Dr. Gawande’s father, who had come for a second opinion about a rare spinal cord tumor. Dr. Benzel also offered empathy and a humanistic option for managing the gradually paralyzing condition.

“The tumor was worrisome,” wrote Dr. Gawande, “but [Benzel] now understood something about my father’s concerns. He believed my father had time to wait and see how quickly his symptoms changed. He could hold off surgery until he felt he needed it….Benzel had made the effort to understand what my father cared about most, and to my father that counted for a lot.”

Thanks in part to this depiction, Dr. Benzel has been recognized as a paragon of caring for patients with potentially life-altering or life-ending conditions. The skill has more to do with honoring patient priorities than touting medical capabilities, asserts Dr. Gawande.

Cleveland Clinic’s new Center for End of Life Care explored this concept in its first Grand Rounds, held in April 2017. Dr. Benzel sat down with the Center’s Medical Director, Silvia Perez Protto, MD, and shared more about the case of Dr. Gawande’s father and other insights on end-of-life issues. Edited excerpts from their conversation follow.

Dr. Perez Protto: Tell us a bit more about Dr. Gawande’s father and the case presented in Being Mortal.

Dr. Benzel: When I met him, Dr. Gawande’s father — who was a surgeon himself — was in his mid-70s and functioning at a very high level. He had been having problems with coordination and clumsiness. An MRI showed a very impressive lesion in his cervical spine.

He was turned off by the approach of a different surgeon, who had recommended surgery relatively urgently. After listening closely to the things he said he really valued, I recommended a more conservative approach.

After he chose me as his doctor, I watched him for a couple of years, at which time he began deteriorating more rapidly. We decided it was finally time to do something — a laminectomy, removing the bone to take pressure off the spinal cord. The tumor itself could not be removed.

You might ask, “Why didn’t you do that sooner?” Well, it’s a big operation, one you may choose not to do at all. It was his choice to do it, not mine.

Biopsy showed that the tumor was a malignant astrocytoma, which is what we expected. For that type of tumor, survival is somewhere between two and five years. That was the case with Dr. Gawande’s father.

He was a remarkable person in that he made decisions if you just let him. They were, for the most part, good decisions.

Dr. Perez Protto: I assume the communication model at the time of your training was either paternalistic or informative. How did you come to learn the importance using an interpretive approach — in other words, involving the patient in decision-making?

Dr. Benzel: When I trained, we learned the paternalistic aspect: telling patients what to do. The informative aspect is telling patients why they should do what you’re telling them to do. The interpretive aspect is a dialogue, back and forth. Basically, it’s informed decision-making. Paternalistic and informative styles are a monologue, but what’s important is having a dialogue, engaging patients in the decision process.

Almost 40 years ago, I had a young patient who had neurofibromatosis — bumps all over her body, not an attractive condition. She had minimal family, and she had breast cancer with metastasis to the spine. She was alone in the hospital postoperatively.

I had left for an American Association of Neurological Surgeons meeting, where I heard a presentation by Rabbi Harold Kushner, author of When Bad Things Happen to Good People. He said that to properly manage patients who are dying, we must be aware of the two things these patients are afraid of. The first is pain. Dying patients are fearful of pain and must be helped with their pain. The second one — which was a shocker to me — is abandonment.

That word hit me hard. When I returned from the meeting, every night I made it a point to visit that young patient, sit on her bed and talk to her. I think I made a difference to her, and it made a huge difference to me, cementing in my brain the importance of communication and the concept of abandonment and how to dialogue with dying patients.

Dr. Perez Protto: So dialogue is invaluable, but is there ever an appropriate time to be paternalistic?

Dr. Benzel: Yes, some patients — maybe because of intellect or because they are very passive — can’t make a decision. I think we need to be paternalistic appropriately, but with that comes tremendous responsibility because we’re making a decision for the patient.

Sometimes when patients or their families want unnecessary treatments — groping for the last bit of hope at the end of life — I will tell them, “No, I’m not going to do that. I’m not going to expose you or your loved one to the torture of an operation and the financial burden.”

Dr. Perez Protto: How do you balance hope and realism when counseling a patient with a terminal disease?

Dr. Benzel: I think it’s incumbent upon all caregivers to be realistic with patients so they can make good decisions. Often I see patients who have a terminal cancer and it’s clear that nobody has really talked to them about their mortality. Providers don’t want to have those conversations. Such conversations make them uncomfortable.

But I tell patients and their families, “I’m going to tell you what I think. I’m going to shoot straight because if I’m too optimistic or too pessimistic, I’m not doing you a favor. You cannot make a good decision if you’re not being realistic.” If a patient thinks, unrealistically, that surgery will cure him, he may decide to have the surgery when it may be better not to.

Dr. Perez Protto: No one is comfortable talking about death. How do you talk about possible complications, including death, during your consent process for surgery?

Dr. Benzel: I have a checklist that I pull up on the computer. I go over all the points, with the patient looking at the list with me. After we talk about the potential negative consequences of surgery, the last thing on the list is death. I talk about it with every patient, even those having more minor procedures. Talking about death is uncomfortable, but the more you do it, the easier it becomes.

When a patient admits they’re worried about dying, I say, “Boy, if you weren’t, that would be very abnormal! Let’s talk about it.” Then I try to find out what worries them about dying. Is it pain? Is it abandonment? We need to talk about the good, the bad and the ugly so we can try to improve the quality of life in their last chapters of life.