Acknowledging Mortality and Death in Cancer Care

The arc of cancer care, from diagnosis through treatment and survivorship, is fundamentally shaped by the reality of mortality. While the core mission of oncology is to extend and improve quality of life, a complete and compassionate approach demands that clinicians proactively address the possibility, and eventual certainty, of death. This is often the most challenging conversation a clinician faces, yet it is also one of the most critical to ensuring patient-centered care.

Daniel C. McFarland, DO, and William S. Breitbart, MD, delve into the complex psychological, ethical, and clinical landscape surrounding mortality and death for patients with cancer during a recent Oncology-on-the-Go episode in collaboration with the American Psychosocial Oncology Society.

Breitbart and McFarland emphasize that acknowledging mortality is not a defeat but an essential step toward empowering patients to live well. This is achieved by creating an environment where the patient feels welcome to talk about their fears. Additionally, Breitbart addresses the common clinical fear of giving “false hope”, while true hope is “the courage to create an uncertain future”, in which life can still have meaning.

McFarland is the director of the Psycho-Oncology Program at Wilmot Cancer Center and a medical oncologist who specializes in head, neck, and lung cancer, in addition to being the psycho-oncology editorial advisory board member for the journal ONCOLOGY^®; Breitbart is an attending physician and the Jimmie C. Holland Chair in Psycho-Oncology at Memorial Sloan Kettering Cancer Center.

McFarland: How would you counsel a patient with cancer who has been referred for depression?

Breitbart: I would probably go in and see the patient with you, and I would try to engage the patient in a discussion with you. It boils down to a couple of very basic, simple things. One of the things that is critical for both oncologists and psycho-oncologists is that what we try to do in every encounter is have a human conversation, a basic human conversation. What do I mean by that? Through either the way we convey ourselves, what we might ask about, or how we might start engaging [with the patient], we want to convey the way we sit, the way we stand, and the way the nonverbal and verbal cues are given. We want to convey the message that you and I, a patient and a physician, are both human beings. We’re both in the same existential boat. We are both mortals. We have the hope. We both have the same existential concerns, and the only difference between you and me is time and knowledge.

It is your time to be sitting in bed or the hospital or sitting across from the oncologist. My time will probably come at some point. [Regarding] knowledge, what it is that is threatening your mortality in a more immediate sense, you can see what might get you right, what might result in mortality? I may not have that knowledge yet, but I have some knowledge about cancer and treatment, either medical oncology, psychiatric, or psycho-oncology. I have some knowledge that may have helped. The first thing is to start to establish and engage in a human conversation.

McFarland: You are saying as an oncologist, you are helping by being 2 human beings sitting together and having a conversation regarding mortality?

Breitbart: There is not much difference between us in terms of the fact that we are both mortals. We have this in common, and so for us to talk about existential concerns, mortality is not unreasonable. You have them. I have them too. We can talk about them. There are boundaries in terms of how much you want to reveal about yourself. It is perfectly okay to be somewhat revealing in the sense of, “I worry about dying too, or I think about death as well.” As an oncologist, you do not necessarily want to push the conversation of death and dying and how you are feeling about that. How do you feel about the fact that you are dying? You want the door to be open for the patient to feel welcome about talking about their fears.

An oncologist might say something like, “Many [patients] with cancer, when they hear the word cancer, get frightened. They think immediately of death or dying. I am sure that is on your mind, and I am more than glad to talk about that if you want. I know you are here to talk about how we should treat this. How can we keep you healthy? How can we do that?” What I would probably do when you and I walk in the room is I would, after trying to get to know the [patient] as a person a bit, ask them about their family and what they do for a living, and whether they watch Jeopardy, then start to talk to them about real serious stuff. I might ask them directly, “Are you frightened of dying? Do you think about death?” I might go straight forward because it is a territory that I am very natural in.

Patients with cancer are dealing with an uncertain future. We do not know what is going to happen…The uncertain future is the only future in which you have the possibility of participating in creating that future through the choices that you make. I have this written on my board for my patients [who do telehealth], because one of the things I think that gets a bad rep is the idea of hope. Many of my oncology colleagues are [quite] frightened of giving patients false hope. I can understand not wanting to give patients the false hope that they will be cured, for instance, but the ability to be able to maintain hope that a person can create a future in which their life has some meaning, in which they are able to retain some elements of the essence of who they are, so that life is worthwhile––worth living––while you are going through the treatment.

How do you live in the face of this illness with the treatments that you have to go through? Dying will take care of itself. You do not have to do a lot. You may want to prepare. You may want to make sure that you have a meaningful death. The big problem is, how do I live until that moment? Your problem is, how do I live until I die? That is the real challenge for most patients, and that is what oncologists are engaged in. Oncologists are engaged in working with patients while they are alive with cancer and helping them to have the best quality of life, to help put their cancer into remission, to control it, to eliminate it, if possible.

McFarland: That is a wonderful shift in approach, because as oncologists, we feel oftentimes––I do not want to say put upon––it is our responsibility we take up willingly, and we are providing treatments. The Holy Grail is survival, but also quality of life, and we enhance that through our treatments, and we can lose sight of the living that has to go on during the time someone is getting treatment. Sometimes, reminding people of death will take care of itself. Everyone knows that, but to be reminded of that can jar people into remembering to live. People forget that that is what it is about, because they get attached and fixated on the treatment, these things that ultimately, they do not have much control over, and it causes a tremendous amount of distress… hope is the courage to create an uncertain future.

One thing I have been thinking as you were talking was about the way that oncologists make decisions around treatments and whatnot. Some of them are very clear. The data suggest this, or this is first-line treatment, etc. Many times, especially for orphan diseases, the treatments are not clear. That often creates such distress in the patients. That is often what makes some of these end-of-life conversations difficult for oncologists. It’s much less difficult when the treatment is very clear, and now it is also clearer about the path forward. How do oncologists handle those emotions?

Breitbart: The primary emotion that we end up seeing as psychiatrists or as a psychologist or as an oncologist is fear. Fear takes up all the oxygen in the room, and we think that fear is the only emotion related to death and emotions, and the whole idea of death, and the whole idea of the emotions related to death are much more complex than we even think. When we are talking about death, we are talking about not just the period that leads up to death. How will I die? Will I be in pain? Pain is the process leading to dying, and needing some reassurance that that can be controlled. Our jobs as human beings are to try to have some point in our lives where we become aware of our existence, to create a life, and to create a “Who” in the world; to become a person. At some point, you learn who you are, and then your job is in a world in which you are battered by hundreds and thousands of external events and elections and economies and pandemics and internal events like illnesses and cancers and things like that, to try to preserve the essence of who you are, despite being bad in all these directions.

Your job is to try to sustain and preserve the essence of [the patient]. At some point, if you completely lose who you are, then that is when people express to you the sense that it does not feel worthwhile to exist. That is part of what meaning-centered psychotherapy is all about is trying to help patients sustain that sense of meaning, that life is still meaningful and worth living through, utilizing these sources of meaning. People are concerned about the process of dying and that taking away the chunks of who they are. People are afraid of the actual moment of dying. Then, people are concerned about existence. Will I cease to exist? Dying is more complex than just one thing.

McFarland: We may ask, what exactly is it that you are afraid of? Hoping that it is something that can be remedied easily, but it may be this larger thing. It is just being seen, being heard, and sharing in that experience.

Breitbart: Lives give shape to what your hopes are. I am not advocating that oncologists lie to their patients and say, “Don't worry, this is curable”. To be able to say, this is an effective treatment, it has helped many people. We can work on this. This has a good chance of helping you. We are going to set out what we both hope to set out, which is to create a longer, healthier future for you.

McFarland: This is something that oncologists also struggle with: that we need to make sure the patient understands the truth, maybe it is the intent of the treatment, but do we need to make sure they understand the 5-year survival curves? I remember this paper about collusion, that we may be colluding with our patients when they are expressing these hopes, and how uncomfortable that might be, because you are wondering, “Do they think that is going to happen? Is that realistic?” You are basically saying that these so-called “lies”, or these things that populate our view of the world, have a purpose and that you may go along with them to a certain degree and certain point. That is the collusion.

Listen to the full episode here: https://www.cancernetwork.com/view/how-to-discuss-death-a-conversation-of-mortality-in-cancer-care