My Mother's Last Lesson

In January 2017, while completing his residency, Dr. Colt Williams found himself taking on a second life-changing role when his 65-year-old mother was diagnosed with treatable cancer. The problem? She did not want to live. In this episode of Cancer Stories: The Art of Oncology, join Dr. Williams on his journey to navigate the intersection of oncologic, mental health, and end-of-life care from the dual perspective of physician and family member.

TRANSCRIPT

Narrator: My Mother's Last Lesson, by Colt Williams, MD (10.1200/JCO.21.02382)

In January 2017, my 65-year-old mother was diagnosed with treatable cancer. The problem was that she did not want to live.

Her mental health had declined precipitously after losing my father 8 years before, and her grief proved insurmountable. She had been a functional alcoholic for most of my life, and commonly smoothed over the roughness of a long day with half a bottle of whiskey. Growing up, alcohol had been ubiquitous to the point of banality, yet she was nonetheless able to lead a very successful life. But the silence of my father's absence was deafening, and her few moments of relief were only ever found at the bottom of a bottle. Her life came apart at the seams as she had stopped working, lost contact with most of her friends, and rarely left the house. Then, after years of limitless sorrow, when she was told she had advanced, but treatable squamous cell carcinoma of the tongue, she wanted to allow it to end her life.

Despite a high chance of cure, my mother saw her situation as both cause and justification to end her life. Why pursue a painful and disfiguring treatment to save a life already devoid of light, companionship, or love? She argued that she had already lived a full and rewarding life, and without my father at her side, her existence had become a shell of its former self. Her advanced directive had stated "Do Not Resuscitate" as far back as my father's initial entanglement with cancer, nearly 10 years before. Long before any of these immediate issues arose, she had made it clear that, "When it's my time, it's my time."

Her treatment team was clear that if she received the standard treatments, her probability of survival was excellent, but that the journey would be grueling. Removing a third of her tongue would likely leave her with permanent speaking and swallowing difficulties. Radiation to her mouth and throat would cause severe inflammation and pain. A temporary feeding tube would pump tasteless, khaki colored goo directly into her stomach to bypass her swollen mouth and throat. She was assured that she would be supported by an interdisciplinary team and given any, and all, measures to ensure her comfort.

She asked what would happen if she chose not to pursue treatment. Her oncologist shifted on his stool, his arms crossing, and his speech slowing. I projected my own thoughts and discomfort onto his change of posture, "Why are you asking him that? It's treatable! Tell her, make her fight!" Her oncologist warned us that her cancer had the potential to slowly rob her of her ability to speak, eat, swallow, and eventually breathe. Even with treatment, there was still a chance she could end up in the same situation if the cancer did not respond or if it came back later. All I could think was "at least we would have tried."

My mother found the idea of death comforting as she would be released from physical and emotional pain. After our initial visit with her oncologist, however, she became terrified of the symptoms she might experience as she was dying. I too was afraid of what would come. Nightmares of her choking while I watched on powerlessly were frequent over the next few nights. Still, she was not convinced that treatment was what she wanted. I pushed her, begged her to be treated. After a long, emotional, and arduous weighing of her options, I shared with my mother's doctors a collective sigh of relief when she reluctantly agreed to treatment.

Two weeks before her surgery, I went to visit after my medical school classes. We had talked on the phone the night before, and our conversation had left me worried. My father's death was a common topic for us, but her perseveration on the irreparable void in her soul was alarming. I found her stumbling around the house, her shoulder dragging against the wall after she had careened into it. She was a drunk, but never this sloppy—something else was going on. She slid to the floor, eyes half-lidded. "I'm going to go find your dad." I found the empty bottle of morphine shortly after I had called 911; it was my father's from when he came home on hospice nearly a decade ago. She must have held on to it for all those years, her fire escape from a burning reality.

The morphine was too old and there was too little left in the bottle to kill her, but the message her actions sent was loud and clear. Until examined and cleared by a psychiatrist, she was unsafe to be alone. She had a long history of bipolar disorder, acknowledged but untreated. Her mood would cycle between periods of working late every night to days at a time where she would not leave bed or even shower. There had been stints in the past where she had seen a psychiatrist or tried medication, but they never lasted. She enjoyed being colorful, eccentric, and prone to strong feelings. During the week of her hospitalization, there was no argument that she was unfit to make her own decisions and that her mental health needed serious attention.

After she had returned to an acceptable level of risk to herself, she was discharged on several mood stabilizers and with a follow-up visit with a psychiatrist. She went for a few visits; I suspect more to affirm business as usual rather than out of genuine interest. She quickly stopped going, and her passive suicidality and romanticization of death were ever present. She spoke often of the simplicity and relief of simply ceasing to exist. It has been well established that the risk for suicide is twice as high in patients with cancer compared to the general population, and my mother's history of bipolar disorder and alcoholism further compounded that risk.1 I honestly do not know why there was not a psychiatrist on her care team from the very beginning; her unmanaged bipolar disorder was cause enough to justify comanagement. I deeply regret not having advocated strongly for one from the beginning of her treatment.

As her son and having recently become a new physician, I struggled to know how to help my mother. I tried to delicately toe the line between acting as my mother's advocate and protecting her from herself. In a patient as complicated as my mother, one with extensive comorbid psychiatric illness interspersed with episodes of acute delirium, the patient's history of previous preferences may be quite valuable. In my own fear of losing someone I loved, I lost track of what was truly important to her as a human being. The exigency of her attempted suicide blinded me to the otherwise valid intricacies of her longstanding values regarding her end-of-life care.

Even amid the turmoil of her attempted suicide, the specter of her cancer never strayed far. Ultimately, she resigned herself to treatment, undergoing surgery, completing radiation, and receiving two cycles of chemotherapy. She tried to quit three times, each time her radiation oncologist and I encouraged her to continue. Despite her insistence that life was not worth living, she continued onward, driven more so by the fear of a painful death than by the desire for life itself.

I was acutely aware of her existential angst. At the time, it felt like a festering wound that had been covered merely to spare the eyes of those looking on. I was starting my medicine residency at this point, and my burgeoning understanding of patient care only added to my disquiet. I found her plan of care to be hollow. If she truly did not want to be treated and only wanted to avoid suffering, did treatment have to be all or none? Couldn't her physical suffering be minimized while still respecting her autonomy in her right to choose how she should live and die? More disturbingly, if her desire to forego treatment wasn't sound, why wasn't her mental health being treated more aggressively? I could not put these worries to words, and only with the clarity afforded by time can I now explain what exactly troubled me as new physician, let alone as her son.

The hollowness I felt in her care could not be directed toward her care team, as they provided the standard of care. Her surgeon performed excellently in the operating room, her medical oncologist prescribed appropriate chemotherapy, and her radiation oncologist delivered her radiation with precision. Equally, my mother participated in her care as much as her mental health allowed her to. The health system, however, failed her. It felt as though she received her care piecemeal from each specialist, rather than visiting with members of a unified team. Where there should have been collaboration between oncology and psychiatry, there was fragmentation.

Early integration of psychiatric care would likely have had tremendous impact on the last year of her life. Cancer does not afford us the time to treat our patient's diseases sequentially; her mental health had proven to be as great of a threat to her life as her malignancy. Although distress screening and integrated psychosocial treatment are standards of care set by the Commission on Cancer, access to mental health care is still woefully inadequate in many parts of the United States.2 As oncologists, we will inevitably treat patients with mental illness, addiction, or both. Assessment of and intervention on our patient's mental well-being should be given as much priority during our visits as investigating a new anemia or peripheral neuropathy. When there is not a collaborative care model to fall back on, it is imperative that clinicians strive to ensure that patients receive the resources they need.

Despite it all, despite the arguing, the pleading, the crying, the pain, the suffering, despite completing her therapy as prescribed, her cancer continued to grow and surrounded her airway. She entered home hospice and struggled along for a few more weeks. She called me one morning after another sleepless night, gasping for air, and told me, once again, that she was ready to die.

I had learned to ignore those words, alarm fatigue blunting their emotional impact, but this time there was something different in the way she spoke. She was neither groping for consolation nor lost in the trance-like depths of her grief. Her voice was calm and determined, strength drawn from the finality of her decision. She did not need to fight anymore; the imminence of her death was now inevitable. It was the most peaceful she had ever been in my adult life. Six days later, after she stopped putting food or water into her feeding tube, she finally found the relief she had so long desired.

It has taken these 4 years to realize that my desire for what could be obscured my ability to see what was. More than anything, I wanted to spare her from what I saw as avoidable suffering, but I had also seen an opportunity. She would have needed to be sober for chemo, or risk toxicities above and beyond what was already expected. I let my emotional needs drive how I advised her. I wanted her to be treated because I was too afraid to accept her mortality, and too hopeful that this could be the start of sobriety. In the moment, I told myself that she could not truly want to forsake a future that still held so much potential, that she could not truly be willing to abandon her family. At first, I looked back upon my actions with cold acceptance, telling myself that her untreated mental illness was clouding her judgment. I felt justified in pushing her to continue with treatment in what I saw as my duty to care for her. The steadfastness of my conclusions softened into ambivalence the more I reflected. Through my supposedly benevolent interjection in her life, did I inadvertently cause her more suffering in my attempt to avoid it?

Now, I am no longer certain I would have pushed as hard or for as long as I did, or perhaps have even pushed her at all.

Dr. Lidia Schapira: Welcome to JCO's Cancer Stories: The Art of Oncology, brought to you by the ASCO Podcast Network, a collection of nine programs covering a range of educational and scientific content, and offering enriching insight into the world of cancer care. You can find all of the shows, including this one at podcast.asco.org.

I'm your host, Lidia Schapira, Associate Editor for Art of Oncology and a Professor of Medicine at Stanford. My guest today is Dr. Colt Williams, a fellow in medical oncology and ethics at Mayo Clinic. He will be discussing his Art of Oncology article, 'My Mother's Last Lesson.'

Our guest has no disclosures.

Colt, welcome to our podcast.

Dr. Colt Williams: Dr. Shapiro, thank you so much for having me today.

Dr. Lidia Schapira: It is my pleasure. I'd like to start by asking you what you are currently reading, or what you have recently read that you would recommend to our listeners. I suspect that most people who love to write are also avid readers. Am I right?

Dr. Colt Williams: You are very right. I actually love science fiction. And I recently picked up Ender's Game - I had never read it despite the media attention it got a few years ago when the movie came out. And boy, it is just as good as I hoped it would be.

Dr. Lidia Schapira: That's fantastic. I'm glad you enjoy it. Let's talk a little bit about your essay. It is very, very personal and very moving. The strong message I took from your essay was how important it is to support caregivers, and how important it is to recognize and attend to mental health during cancer treatment. Tell us a little bit about what led you to write and share this very personal moving story.

Dr. Colt Williams: My family life growing up was very private. And both when my father initially had cancer in 2009, and then when my mother fell ill in 2017, the culture within my family was very isolating. And I found myself left without much support for myself as a caregiver to my mother. And equally for both my parents, when they were going through cancer treatment had in a way kept them from being able to experience a lot of the help that they needed for both of them.

Reflecting back as I grew through my medical training, and became a resident and then a fellow. As I became my mother's primary caregiver, I saw the damage that that had played both for her and for myself.

And in reflecting on this, I had always felt that there was something that wasn't quite right with how things had played out with my mother's death. And I really wanted to be able to put to words for my own healing more than anything else, a way to find closure from my experiences.

Dr. Lidia Schapira: Let's talk a little bit about the process and the motivation to write as a way to express yourself to achieve some clarity, as you say, to bring closure. How did you get started? And how long did it take you to write this piece?

Dr. Colt Williams: Getting started was the hardest part. I initially wrote a very early version of this in medical school when my mother was first diagnosed with cancer as a case report for how we may approach our patients with comorbid mental illness and physical illness.

And that first case report changed many numbers of times in the ensuing four years that it took, or five years, actually, until its final form. I started working on it in earnest again, after shelving it about a year ago. It took a solid year of coming back to the piece a few times a month, looking at wording, looking at the way I was writing to really make sure that the message I was wanting to convey was clear because I felt there was so much that I want to explore both of myself, and so much I wanted to share about my experience. But I also knew that I needed to distill down my experience into a few key points that would, one, really resonate with myself in terms of what were the issues that kept me from feeling that I had the closure that I so desired, but two, how can I make this a digestible piece for my audience.

And writing has always been something I've enjoyed. I've enjoyed writing poetry. I've enjoyed reading. And for me being able to put pen to paper to help catharsis some of my thoughts has always been very useful for me.

Dr. Lidia Schapira: So, did it work? Did this piece give you what you hoped it would give you?

Dr. Colt Williams: It did in a bittersweet way. It was very hard sometimes to sit down and really think about some of these harder moments that I shared with my mother and to go back and relive them but in taking the time to very thoughtfully relive what were traumatic experiences for me, I was able to examine them now with the benefit of time, in a way that I couldn't because of my emotional clouding at the time for how intense the emotions were. And so, writing did provide me with a lot of closure.

Dr. Lidia Schapira: Sometimes it takes many years to be able to write about something that is emotionally resonant. It's taken me about 20 years to be able to write about a patient that I love dearly who's died, so I totally understand.

But what about the other piece that is sharing these very personal thoughts with a broader audience, especially since you're sort of still in training.

Dr. Colt Williams: I remember coming away after my mother had died, and we had her cremated and we had finished with our small ceremony for her thinking that the experiences I had had with her mental illness, with her alcoholism, with the attempted suicide, all of this during training were all things that seemed that, at first glance, I may not want to share. This complicates things. I don't want my residency program director to know what's going through or my potential fellowship matches to know the troubles that I've been going through. While I was doing well with things, I felt that there was a lot that not only I could learn, but that could be really helpful for others.

Case in point, with how isolating things felt, I felt this need to connect with other people through my experience. And I felt like the conclusions that I had arrived at really coming to terms with the fact that I was and am ambivalent about my actions with how I pushed my mother to receive her care was something that other people could relate to, and that someone else could learn from. And I hoped that I was able to maybe shorten the period from writing, from point A to point B in that process for someone else, through reading about my own experiences.

Dr. Lidia Schapira: How has this experience, Colt, informed your work? I can't help but comment on the fact that you're doing a fellowship, not only in oncology but in ethics.

Dr. Colt Williams: Extraordinarily informative. I think about my mother often when I see my patients, for better or worse. I can't help but project sometimes with some of my patients, but it gives me a reason to pause and to be patient, whereas maybe some other colleagues may be less tolerant of individuals who are non-adherent with their medication regimen or decided to end their radiation treatments early because of side effects despite the clear risk to their health in doing so.

I feel that I can approach patients who can be more complex and may be more nuanced in a way that I can provide them with the grace and with the space that they need to be individuals, even if that does not necessarily line up with what we as their physicians know to be best for their physical health, knowing that not everyone can abide by the restraining needs of cancer treatment.

And by extension, with my interest in ethics, there were a lot of things that I saw both in the way that my mother interacted with her physicians, the ways that she was able to push them, the ways that she was able to make them uncomfortable, made me think a lot about how ought we care for patients like this? And who are we as physicians in the roles of our patients' lives? What role are we playing for them? And how should we exert the very clear power that we have and the important role that we have in a way to make sure that we're always acting in our patient's best interests?

Dr. Lidia Schapira: That sounds amazing, actually. Can you give me and share with our listeners an example of how your own experience as a caregiver and as a witness to your mother's complicated history, as you talk about her romanticizing deaths, and really being prepared to die, almost from the time she was diagnosed, how that has perhaps impacted your clinical care?

Dr. Colt Williams: I can think of a few patients I've seen recently who have come to me after learning that they have metastatic cancer at their time of presentation, very openly discussing forgoing treatment in its entirety, despite there being options proven to not only prolong their overall survival but their quality of life.

And I feel that, even within my group, there are some providers that would really, really push strongly for those patients to consider those treatments without taking the time to consider why: why are you approaching your treatment like this? Why are you approaching your disease like this? What is it that makes you think that this is the right way?

And I say think not to imply that they think it's wrong or to think that they are thinking wrong, but to truly understand where they're coming from as an individual and as human beings.

We all have extraordinarily unique experiences that lead us to become the people that we are. And all those experiences are valid, and simply because my understanding of how I believe I can best take care of you doesn't line up with what your experiences are, does not mean that your goals for your own life are any less valid than what I think you ought to be doing.

So, I think at the end of the day, I'm willing to have a conversation more often with my patients. I'm willing to get myself into places that might be both uncomfortable for me as the provider, and uncomfortable with the patient if they're willing to meet me there on common ground, so we can really find what is going to be for them as human beings the best treatment path moving forward - treatment or not.

Dr. Lidia Schapira: It's wonderful to hear you and one of the themes that I hear in your approach is that you find medicine not only rewarding but really mission-driven. And part of the mission is to get to know the person who has the disease.

I found your essay very powerful because it addressed so many different issues that make caregiving and giving of professional care so complex. One is the idea of a whole person perspective worldview, as you've just explained to us the idea that we want to listen to and help patients tell us what matters to them, and help them live their journey according to their own values and aspirations.

But the other is the issue here of the sadness that emerges from your essay. The fact that your mother was ready to accept the sadness and the finality of death. The fact that it was complicated by her lifelong addiction and history of alcoholism, as you say, the deafening silence of your father's absence in her life. And perhaps what she felt she wanted to do for her children whom I am pretty sure you don't say it, but I'm sure she loved dearly.

How did you manage to put all of this into the essay? It certainly impressed this reader, but how did you make that decision to include all of these different threads into your narrative?

Dr. Colt Williams: It felt dis-genuine to not include them. And how I managed to do it, I think is a mystery to me as well, to be completely honest. The sadness, the pain, so many compromises with her, so many times where I worried about her, so many times where I could think to myself, if only things were a little bit different, if only she could see things and the way that I see things, that was such an integral part of my experience, and through the pain of not being able to have the person that brought you into this world see the value in their own life was really the impetus that led me to the conclusions I'm now able to draw about recognizing her own values and individual.

And while I will always intrinsically see her as my mother, and for all the things that a mother means, before she was my mother, she was still her own person. And those beliefs preceded me. And while any child, I think, would want to think that they are the center of their parent's life, sometimes you're not.

Dr. Lidia Schapira: In your essay, you share with the readers that you feel that she found her peace before she died. Have you made your peace with her death?

Dr. Colt Williams: I think I have now. I struggled with it for a long time. I struggled with whether I did the right thing by encouraging her to seek treatment when she didn't want to. I struggled with whether I should have pushed harder.

I fought with myself on both sides of the coin, which way I should have gone playing out the 'ifs'. What if I would have done this? What if I wouldn't have done this? How things could have been different. But in the end, it's the truth that when I spent my last few days with her, it truly was the most peaceful I had ever seen her in my life. That te restlessness that could be felt within her, even before she was ill, was gone.

She was finally complete in a way. She, in her mind, had completed her mission. I was in medical school. I was successful. My sister's a lawyer. She's doing well. Her children were grown and taken care of. And she could finally be free of what she felt like were fetters holding her down to a horrible existence.

And I think the experience of being able to be present with her and to place myself in her shoes, as best I could, was really enlightening. And I think my last week with her while she was at home dying was the most formative event of my life.

Dr. Lidia Schapira: I've never seen you with patients, but I suspect that you're very sensitive to the plight and situation of caregivers. Can you tell me a little bit about that?

Dr. Colt Williams: Cancer is a disease that affects not only the patient but the entire family. It takes many people to take care of our patients, from the physicians to the nurses to our pharmacists to our CNAs that are in the hospital, but equally, we see them for an hour, if we're lucky every three weeks, and our patients' family members or their caregivers are with them the other 24 hours a day and the other times, they're always there. And if it wasn't for their caregivers, our patients certainly would not be doing as well as they are.

Cancer is not just a disease that affects the organs, but it's also a disease of existential angst. It's a disease that affects our understanding of what it means to be human, of what it means to have a limited time on this earth, to be mortal beings. And those are things that we often as a species avoid encountering until we absolutely have to.

As I saw myself, trying to handle this in isolation does not bode well. We are a social people and we rely on our caregivers and our family extraordinarily heavily. And it's just as important to make sure that our patients' families are set up for success if we want our patients to succeed, as it is to make sure that we've dosed our chemotherapy appropriately or provided the appropriate antiemetics before infusion.

Dr. Lidia Schapira: Listening to you talk convinces me that you have found your path in onc, and in ethics, and perhaps moral philosophy as well. It's wonderful to hear you reflect. I thank you very much for sending us your work and wish you much success in your career both as an oncologist and ethicist.

Dr. Colt Williams: Thank you, Dr. Schapira, for having me. It's been an absolute pleasure to speak with you.

Dr. Lidia Schapira: Until next time, thank you for listening to this JCO's Cancer Stories: The Art of Oncology podcast. If you enjoyed what you heard today, don't forget to give us a rating or review on Apple podcasts or wherever you listen.

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