Pat breathed sporadically and with difficulty. He made noises and sighs that sounded like his voice. Eerily, Pat seemed more awake than he had before. It was the first time in two weeks we had heard his voice, previously silenced by the breathing tube and the whooshing sounds of the ventilator. Julie and Tom hugged their son. Julie told him, “Pat, it’s time to let go.” Shortly afterward, Pat stopped breathing, his heart stopped beating, and he was gone.
So many people have shown our family such amazing support, generosity, kindness. Such profound beauty. Our friends have had the boys three times a week for months now, some people making the journey over and over. The school counselor offered repeatedly to bring us dinner from their parents’ guild, but we always said no, because our friends had us more than covered.
I have felt the swell of our village supporting me, all of us, every step of the way. I am not sure I will ever stop weeping when I think about all the amazing kindness.
Most of all, I find myself crying because my partner in this, the man who has been with me every step of the way, my amazing darling husband, Pat, is heading back to Santa Monica today to be there for the boys as they wind down the school year. I’ve missed them so much. My lost year. So many recitals, sports matters, joys, and lows. I’ve just missed this year. Of course, as Pat pointed out, we’ll be back here first thing tomorrow with the boys—so he won’t be gone long….
… I’ll see Pat and the boys on the weekends, but he will no longer be my constant companion. He has sat with a mask on and plastic gloves—by my side for months now, there anytime I needed him. Helping me change, cleaning up all sorts of nasty things, just there, loving me. Pushing me to read, to take one more loop in our walk together, pushing my IV (Stalker) pole, opening the doors, and going two miles on our last walk! We are a team.
One patient’s wife forever teased us, calling us “the lovebirds” as we walked. They said we’ve inspired them. It’s Pat. He has never doubted—he said he was scared at first when I got the diagnosis but that he’s never worried since.
He’s just believed in me and my ability to win this battle.
I am eternally grateful, and I know we did this, together. I saw other couples get snippy with each other through this process—how could they not? So much can start stress—but we never did, not once. He never, ever lost his patience with me.
He knew my only job has been to save every ounce of energy for healing. While he juggles work, the boys’ schedules, the nonstop communications with my well-wishers, making updates, all the while at my side. So today, my mom comes as the first in my new series of caregivers and Pat heads to Santa Monica—I feel such profound sorrow. Even though I’m making progress, I will miss Pat terribly.
I wonder if I will someday no longer weep when I look back on this time and how moved, impressed, grateful I’ve been by [or for] him? By our friends? Our village? How will I get through that first day I go back to school and see some of our village up close—how will I not weep? I guess I’ll be carrying tissues for a long time.
—MAY 15, 2015
Victoria’s and Pat’s experiences bookend many issues surrounding the end of life. Victoria’s illness was prolonged; Pat’s was brief. Victoria maintained consciousness and self-autonomy until the moment of her death. Pat presented in a coma and never regained consciousness. Victoria underwent treatments, which caused her harm, in an effort to control and cure her leukemia. Pat’s treatments were an effort to save his life, treat a catastrophe, and allow his brain a chance to recover. Both were sudden and shocking diagnoses in otherwise relatively healthy adults. During Victoria’s prolonged illness, there were many opportunities to discuss her condition and prognosis with her family and to prepare (to some extent) for her death. These opportunities did not exist in Pat’s case. In neither instance were Victoria and Pat prepared for the possibility of death. The absence of planning and documents, such as executed living wills, contributed to the stress felt by everyone trying to exercise their wishes. In both cases, heroic efforts by talented, committed, compassionate medical teams ultimately did not prevail, despite concerted and heroic effort.
Subarachnoid hemorrhage and coma are disease processes with which I have great familiarity. I have spent much of my career caring for patients with aneurysm ruptures and hydrocephalus. I have counseled families, seen many patients recover, and discontinued care in others. Until Pat’s illness, however, I had never found myself so closely involved in and directly responsible for decisions. I was the designated healthcare power of attorney. It was up to me, legally, to decide whether to persevere or to withdraw. I felt the weight of those decisions. I also felt powerless to effect changes in Pat’s condition and could only use my knowledge to explain to his family and friends what was happening.
Because of this knowledge, I could see, more clearly than other family members, that all the interventions, from the EVD placement to the aneurysm clipping to the two weeks of waiting for Pat to improve, led to no significant change in his condition. Even though the doctors encouraged us to be hopeful, there never was cause for optimism. Pat never improved at all.
The difference between being a concerned doctor and an invested family member is huge. Conveying the details of Pat’s illness to family and friends took hours each day. It included multiple conversations, conferences, and emails; reviewing anatomic diagrams; explaining tests, scans, machines, and monitors at Pat’s bedside; explaining the details of his neurologic examination; and having discussions with doctors, nurses, and technicians. Our discussion with the palliative care team about the mechanics of withdrawing care took well over two hours. Many of these conversations were painful and emotionally draining, especially those with Nick and Will.
The degree of disruption for the family was also extreme. I took time away from work. Other family members set aside their jobs and commitments, found childcare, traveled across the country. This experience confirmed what I had already come to understand: there is simply not enough time for a busy doctor to address all of these concerns alone. Only with a team approach can we begin to effectively answer the questions and meet the demands of families facing such emotionally draining and disruptive crises.
Despite a mortal illness, Victoria did not discuss the possibility of dying with her family or whether she wanted to be cremated or buried. Pat appeared to have prepared documents outlining his medical wishes, but these were nowhere to be found and we did not have access to his safe deposit box. As a result of this experience, each of my children immediately sent advance directives to our attorney naming healthcare powers of attorney and stating their wishes for a natural death and cremation. My wife and I have done the same. We will make sure these documents are easily accessible.
I had been afraid to tell Nick and Will their father was going to die; but the honest and open discussions we had helped them understand and come to terms with what was happening. They rose to the occasion by being able to help plan the memorial events and the termination of life support. The family came to LA to support them, and both boys struck an inclusive and welcoming stance with all of us, which served to bring closer together the Whelans, the Sterns, and family friends.
In the end, this story is also a love story. The legacy Victoria and Pat left is one of love. They loved each other passionately. They loved life. And they loved their boys, Nick and Will. They brought people together. They taught me about how to love, how to live, and, ultimately, how to die: with preparation, acknowledgment, and, where possible, acceptance.
CHAPTER EIGHT
doctors speak:
conversations with colleagues
I walked alone in the chill of dawn
while my mind leapt, as the teachers
of detachment say, like a drunken
monkey. Then a gray shape, an owl,
passed overhead. An owl is not
like a crow. A crow makes convivial
chuckings as it flies,
but the owl flew well beyond me
&nbs
p; before I heard it coming, and when it
settled, the bough did not sway.
—JANE KENYON, “PROGNOSIS”
Having been changed as a doctor by my sister’s illness and death, I began to wonder how other doctors are affected when they or a loved one fall ill. Does it change their perspective as dramatically as it changed mine? How do doctors integrate personal loss into their professional lives, and how do these experiences influence the way they relate to patients and their families? How do physicians manage their grief without withdrawing or becoming overwhelmed? How do other doctors respond when someone they love does not want to hear the truth as we see it? How do they decide how much information to give their patients? How can we do better?
I decided to interview some of the doctors I know best to try to find answers to some of these questions. In the course of these interviews, I learned that we all share common experiences of loss, but that we rarely find—or make—the opportunity to discuss them with one another. As a profession, we seldom come together to express our feelings, especially when addressing failure. Physicians are expected, by ourselves and by others, to bounce back from these losses and to absorb them without consequences. This can lead to disengagement, substance abuse, early retirement, or burnout.
There is a general perception that doctors are not the same as other people. They are expected to handle difficult situations seemingly without impact. Yet physicians experience both the professional and personal sides of medical care and need to strike a balance between these areas. Just as I had to move between my medical training and practice and being a supportive older brother, the physician colleagues I interviewed have all had to balance their professional lives with their personal relationships, whether the patients are parents, spouses, aunts, or siblings, or—in one instance—when the physician was himself the patient.
I interviewed four friends and colleagues about their experiences on the “other” side of medical care. Matt Manning is a radiation oncologist whose father died of renal cancer. Gus Magrinat is an oncologist who runs our breast cancer program and whose wife, Mary, herself developed breast cancer. Stacy Wentworth is a radiation oncologist who describes the death from brain cancer of her aunt, a chief nursing officer, and the impact this had on her life, as well as her ideas about the training of physicians. Finally, I met with Sean Fischer, my sister’s hematologistoncologist, after she died, to learn his perspectives on Victoria’s illness.
These community-based physicians offer perspectives and insights that are useful to us all. They also provide ideas for improving the way we render care, approach patients, and educate future physicians.
MATT MANNING
Matt is a radiation oncologist, now Chief of Oncology at Cone Health Cancer Center, who trained at the Medical College of Virginia. He moves, bear-like, through the halls of the clinic, his freshly pressed lab coat hanging on his broad shoulders. Matt’s size suggests someone who might fill the room, but when he greets you (pre-coronavirus) it is often with a quiet, unassuming handshake. I have known him for twelve years and we have worked together for much of that time. Together, we convinced our hospital system to purchase a linear accelerator and begin a stereotactic radiosurgery program to treat patients with brain tumors, often instead of surgery, but also in combination with surgery.
Radiosurgery involves precisely calculating and delivering single treatments of radiation to cancerous brain tumors, which have usually spread from other organs, such as lung or breast. Matt and I created a multidisciplinary conference with a navigator, radiation oncologists, radiologists, oncologists, neurosurgeons, pathologists, geneticists, and radiation physicists to review cases on a weekly basis so that we could provide optimal care for patients. To help us address social issues affecting patients and their families, we embedded a palliative care specialist in our clinic, and we recently hired a Duke-trained neuro-oncologist to help us run and further develop the program. Over the last eight years, we have treated almost 1,000 patients.
I asked Matt what he had learned from his father’s illness and death and how the experience has affected his thinking going forward. He is often optimistic about outcomes and he was so with his father, but he saw, through his father’s illness, that this optimism was ill-founded. Yet previous successes with patients have helped him form this outlook and push for a successful outcome with patients, even if it seems unlikely.
As a physician with experience, if you have a number in the numerator representing success stories that you have personally been a part of, that number tends to inform decisions about your next patients. I have a couple of numbers in my numerator that will stick with me forever.
One was a case where I was working at the VA hospital as a resident in the pulmonary ICU. The VA hospital was a way station for certain patients who had critical injuries and who were on ventilators. Most were unlikely to come off the ventilator, and they spent their time in the ICU until a bed opened up in a long-term facility. One day, a guy came in who was, maybe, a thirty-five- or forty-year-old police officer. He had been injured. He was on a ventilator, and for inexplicable reasons they were never able to wean him off the ventilator. He ended up on my service.
I talked to the attending physician about different options, including treating this young guy as if he were an older end-stage smoker by allowing his CO2 levels to rise above where we are normally comfortable. They allowed me to adjust the settings over a few days. I ended up weaning him off the ventilator, and the guy recovered and got better and went home. That is not a common scenario but having been through that experience just that one time sixteen years ago, I now look at patients on ventilators [without] feel[ing] completely hopeless.
A lung cancer patient who is ventilator-dependent often gets resigned to that being the end of their care. So, yes, I have had some experiences that make me believe that unexpected recoveries are possible, and I do not think I harm patients as a result of wanting to be more aggressive. I weigh the pros and cons of the treatments, but if you put me, an aggressive physician, with a family that wants to be optimistic but does not want a bad outcome despite the odds, our combination could be problematic. We may agree to do aggressive things, such as more courses of radiation than people might recommend or more intense chemotherapy than most patients want to endure. What could have transpired sort of peacefully over a few weeks or a month may get stretched out to a six- or eight-month period of time spent in a cancer center or in a hospital.
I get the sense from some patients that they want that time, but I think in some ways, I will mature more as a physician and potentially be less aggressive with age. I guess that may happen as I think about the experience I had with my dad and seeing the devastating consequences of dying in the ICU. As my family members age and as I become personally involved in more of these experiences on the family side, I think that it could change the way I practice.
Here, Matt’s experience echoes my own. I have also become less aggressive with age and am much more motivated to avoid a protracted demise in the ICU than to chase the infinitesimal chance of recovery in a profoundly ill patient with a poor prognosis. Matt learned firsthand, through his experience with his father, the pitfalls of chasing remote possibilities of recovery.
At that age, I probably would not have had surgery done and would have gone forward with systemic treatments. There are some good ones for renal cell cancer now. Immunotherapy. You usually survive longer if you take the kidney out. I might have calculated that it was not worth the risk to go through the procedure. I would not want a feeding or a trach tube placed in me. If things were that bleak, I would not have made those same decisions.
When he [my father] went to see his urologist to talk about the scan result, his urologist recommended surgery to take the kidney out. I set aside what was a realistic, experienced recommendation in my head for what my dad ought to do, and essentially fell into this optimism of Well, if his urologist thinks he is healthy enough to undergo this procedure, then maybe h
e is. Certainly, there are men in his age group who survive that and do well.
He was seventy-six and he had had atrial fibrillation and was on anticoagulation, so there were some risks, but nephrectomy, kidney removal, is not the most challenging surgery. It is not usually a very difficult recovery, and so I went along with that decision. And I thought, This is great if we can be as aggressive as we would be with a fifty-year-old.
Unfortunately, my dad was pretty fearful about surgery and did not really want to do it unless I thought it was a good idea for him. I found myself falling into the same patterns of behavior that I see from my patients and their families, where you let hope drive your thinking more than realism.
The procedure turned out to be a disaster.
Dad had postoperative complications where he was bleeding internally. He had to stay off of his anticoagulation meds for several days, and the bleeding finally stopped. He was transfused probably a dozen units of blood over a few days, and then when he was starting to make a recovery, he developed a thrombus or a blood clot in his heart, and then that broke off and caused a massive stroke of the dominant side of his brain. He lost consciousness. And this is where, in talking with colleagues who were familiar with brain injury, I realized how significant this was.
Initially, I was hopeful that things may turn around, but as days went by and he did not regain consciousness, my family faced some difficult questions. You ask, “Can he recover from this? Can he get better and improve?”
Grief Connects Us Page 13