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

Podcast Transcript

Intro: Neuro Pathways, a Cleveland Clinic podcast, exploring the latest research discoveries and clinical advances in the fields of neurology, neurosurgery, neuro rehab, and psychiatry.

Glen Stevens, DO, PhD: Many patients and families are interested in discussing end of life care with their physician. Most expect their physicians to initiate the conversation. However, providers are trained to maintain health and fight illness, but typically receive little guidance on how to communicate with terminally ill patients and their families. End of life discussions must go beyond the narrow focus of resuscitation and include a dialogue that addresses the broad array of concerns shared by patients and families. In today's episode of Neuro Pathways we're discussing end of life care and what role physicians play in helping patients make hard decisions. I'm your host Glenn Stevens, neurologist, neuro-oncologist in Cleveland Clinic's Neurological Institute. I'm very pleased to have Ed Benzel join me for today's conversation. Dr. Benzel is Chairman Emeritus of the Department of Neurosurgery and a neurosurgeon in the Center for Spine Health in Cleveland Clinic's neurological Institute. Ed, welcome to Neuro Pathways.

Edward Benzel, MD: Thank you for having me. I'm glad to be here.

Glen Stevens, DO, PhD: So let's get started. End of life care means reaching patients in their most personal and vulnerable times, and it requires physicians to become comfortable discussing mortality. Can you give our audience perspective on how to start a conversation regarding end of life care once a patient is diagnosed with a terminal illness?

Edward Benzel, MD: Well, there are probably as many strategies as there are clinical scenarios. In general, if it's reasonable to do such, providing a shot across the bow, as they say is a reasonable way to break the ice. For example, if you don't have all the information yet, but it looks like we're dealing with a malignant tumor, we can present the information in a way that it leaves some hope for long-term survival. Thus allowing the patient and the family to gradually come to terms with the ultimate diagnosis. But I emphasize the most important thing that the physician who is transmitting information to a patient and family is the employment of empathy. Making eye contact, being concerned, listening, really listen, do not break silence. Sometimes emotional patients have just received the diagnosis of a malignant cancer. They may become tearful and not say something for a while. The worst thing we can do in that circumstances to interrupt and break silence and not allow the patient to take the conversation in a trajectory, which would probably have much more meaning, try to be a realist.

So many times I see patients where the doctors have sugarcoated life expectancy or not talked about life expectancy whatsoever. And I think it's just most reasonable to be a realist, not a pessimist nor an optimist. And to always be honest. If the patient asks a question, answer it honestly, because that's what they want to know. They should be assured that they will be in control, there will be decisions that need to be made, that they will make, we need to empower the patient. I like to use the term, allow them to drive the bus. We tend to be paternalistic in medicine and having the patient be in control means a lot to them. Bottom line, establishing a relationship based on trust.

Glen Stevens, DO, PhD: So Dr. Benzel that was very sage advice that you gave and you sort of hit on my next question a little bit, and that is really the timeframe of your evolution as a practitioner. So once a terminal diagnosis is given, I assume most physicians lean on what they learned in training to initiate the dialogue with the patients and the families. Can you discuss your personal journey and how it has evolved over time? I think you sort of foreshadowed that just a little bit with the paternalistic side of things, but what's your personal journey been with this?

Edward Benzel, MD: Well, I finished my training 40 years ago. That was a long time ago by my account. There was no communication training at the time. A physician was either empathetic or they weren't. I feel, at least I think I was always empathetic and listen to patients, but many physicians didn't. You can work on these skills too, which I think I have done over the years, is something that can be learned just like a surgical skill, learning to keep empathy at the top of your consciousness and always be listening and never interrupting. These are things that take a little getting used to, so to speak.

And again, over the years, I've absorbed information early on with the Cleveland Clinic Foundations of Healthcare Communication Program, I was a facilitator and that helped me immensely to understand how to communicate more effectively. This program also touches every physician and trainee in the Cleveland Clinic. And I think it's a great way to establish some sort of a standard of communication care if you will. It's sort of like providing an instructional manual for communication. Whereas before there was none, hence more and more physicians have become skillful in this arena, such as most certainly is the case for me.

Glen Stevens, DO, PhD: So Ed, are there still times that you feel you need to be more paternalistic?

Edward Benzel, MD: Yes, occasionally, and this is rarely, but occasionally I'll have patients that act like a juvenile and they're making completely irrational decisions. Family members may be upset and in those circumstances I will take over the steering wheel and I will drive the bus because what I don't want is for the patient to be harmed.

Glen Stevens, DO, PhD: So Dr. Benzel, would you say this approach works for all patients?

Edward Benzel, MD: Absolutely not. As I mentioned earlier, I think that the number of scenarios are equal to the number of patients that are encountered with this disease. Each patient is unique and requires an approach that is tailored for them. Social variables, family support, or lack thereof, preconceived notions, et cetera, make each case very different from the one before. Part of the physician skillset involves the ability to individualize and tailor communication strategies. Some patients want full control. Others want the doctor to decide. In the extreme, the physician may be required to become paternalistic, but that is an extreme situation. For the most part, the physician should guide the patient to make the best decision for themselves that they can. There is truly no instructional manual here. Although the foundations of health care of course does help us in this arena.

Glen Stevens, DO, PhD: So Dr. Benzel would you say that we've seen progression with how physicians, surgeons are being trained for this type of discussion and if not, what changes should be adapted for current and future physicians?

Edward Benzel, MD: Oh, without question, we've definitely seen improvement over the decades. When I trained, being sensitive was literally frowned upon. That was in the days of the tyrant surgeons who ruled in part by fear. Expectations have changed and behaviors have changed all for the good. Bottom line, we continue to evolve. The physicians and surgeons are becoming more and more empathic and hence, obligatorily have become better communicators.

Glen Stevens, DO, PhD: So Dr. Benzel you've been recognized rightly so as a national leader, when it comes to caring for patients with life ending conditions, as noted in Atul Gawande's bestselling novel, Being Mortal. Can you elaborate on the care you provided to his father and touch on any similar cases that might help others in the field?

Edward Benzel, MD: When I met Dr. Gawande's father, who was a urologist, a surgeon himself in his mid-70s, he was very active and had minor functional impairment and was functioning at a very high level. He had been having problems with coordination and clumsiness and an MRI showed a very impressive and large and extensive lesion in the spinal cord of his cervical spine. It appeared to be non-resectable and it looked like an astrocytoma, which ultimately it turned out to be. He was turned off by one of the other physicians that he had seen back in Boston. And who'd recommended surgery urgently after listening closely to the things he said, that he really valued, time with family, to be in control, work, et cetera. I recommended a more conservative approach. After he chose me as his doctor, I watched him couple of years at which time he began to deteriorate more rapidly and we decided it was finally time to do something.

A laminectomy was performed, removing the bone over the cervical spine, screws were placed to stabilize the spine and the dural sac or the sac around the spinal canal and the spinal cord was opened to give him more room. We did a biopsy and it turned out to be a malignant astrocytoma. The life expectancy from time of first symptoms to death is about two to five years with this tumor. And we counseled him accordingly and he was well informed upfront. You might ask why didn't you do that sooner? Well, it's a big operation, one that can be associated with complications, infections, spinal cord injury, et cetera. And after a big operation like that, for patients with terminal diseases, life is never the same and it wasn't. So my goal in a sense was to give him as much high quality of life before we stepped it down to a lower quality of life with a diagnosis and then ability to treat. My goal essentially was to optimize overall volume, quality of life.

Dr. Gawande, the patient was a remarkable person, in that he made many decisions based on information that he gathered. And I let him drive the bus. He made the decisions. His decisions were for the most part, exactly what I think I would do under similar circumstances. Most importantly, they were his decisions. He was empowered to control his destiny in a sense, based on the realistic data that we presented to him. This type of case is not all that uncommon. And we need to be more cognizant of different clinical scenarios.

I recall in this vein taking care of a 40 year old gentleman with squamous cell carcinoma metastatic to the base of the skull and the upper cervical spine. He had involvement of his brainstem and was dysarthric and was aspirating, had a lot of pain. And I was put under immense pressure by his treating physicians to do a spine operation to stabilize his skull to his spine. And although that may indeed have helped him with regard to the pain he was having upon further scrutiny, it appeared that most of his pain was occurring at nighttime. And because of the diurnal variation of cortisol, it naturally goes down at night. And when pain increases at night in cancer patients, it's often called biologic pain. And we gave him a bump of prednisone every evening. And a significant amount of his pain was eliminated.

Interestingly, he went home, he slept in the same bed with his wife, was with his children, which probably wouldn't have happened if he'd had a big operation. And he died a couple of months later. I think he and we made a good decision in this case. A point to consider here is a phenomenon called the break point. Gawande talks about it a lot in his book, but it's the point at which we as clinicians quit being concerned with and focusing on length of life, but rather start focusing on quality of life.

Interestingly, there are some studies that show that when a physician start looking at the quality, rather than the volume of life, people actually in fact have a higher quality of life and live longer. And I think we need to be cognizant of this and not keep over-treating. We treat too much in my opinion.

Glen Stevens, DO, PhD: So during the past year of COVID, at one point, I think the Cleveland Clinic was doing 80% of the visits via telemedicine. I'm curious how you feel as a surgeon, it affected your ability to give the empathy that you would normally have sitting beside a patient. Did you find that was the same? It was more difficult, it was easier? What do you have to offer us?

Edward Benzel, MD: I think it was a little bit more difficult, but I think also that we've gotten pretty good at virtual visits. I think it's handy in a way, and you can handle things, people don't have to come back for postoperative visits or you can do a screening maneuver before the patient makes a long trip to come to the Cleveland Clinic from a land far away. On the other side of the coin, it is harder to express empathy and having an end of life conversation. I've never had one virtually, but I would really try to avoid that if I could.

Glen Stevens, DO, PhD: So Rabbi Harold Kushner, who wrote When Bad Things Happen to Good People, I read something about you where you were at a conference, I believe. And you can correct me on this, where he was talking about people sort of at the end of life and talked about pain and abandonment. Can you talk about that a little bit in your practice and how it touched home with you and maybe changed how you looked at things?

Edward Benzel, MD: Yeah. This was about 35 to 40 years ago. I was a then at the LSU in Shreveport, Louisiana, and I had sort of an emotional situation. A 26 year old lady with neurofibromatosis and metastatic breast cancer to the spine. She was kind of a loner. No family came up, nobody came to see her. And I operated on her and improved her function. And then I went off to this meeting of the American Association of Neurologic Surgeons. And every year at this meeting, there's a oration given by somebody who's not a neurosurgeon called the Cushing Oration. And this year it was a Rabbi Kushner and he grabbed me like probably no other speaker has.

He talked a lot about death and dying and he did refer to the notion that when people with a terminal illness become adjusted, if you will, to the nature of their problem, they fear two things. One is pain. So please treat these people's pain. And the second is abandonment. That hit me like a ton of bricks. I went back and every night I'd make it a point at the end of rounds to go and just sit and talk with her. We'd talk about her family, talk about her, talk about my family. And I think we both gained and grew a lot from those conversations.

Glen Stevens, DO, PhD: Well, Ed thanks so much for joining us today. I really appreciate your time and insights.

Edward Benzel, MD: Thank you very much.

Outro: This concludes this episode of Neuro Pathways. You can find additional podcast episodes on our website, ClevelandClinic.org/neuropodcast or subscribe to the podcast on iTunes, Google Play, Spotify, or wherever you get your podcasts. And don't forget you can access real-time updates from experts in Cleveland Clinic's Neurological Institute on our consult QD website. That's consultqd.clevelandclinic.org/neuro or follow us on Twitter @CleClinicMD, all one word and thank you for listening.