I had one of the best teachers in the world, but as a resident, I felt, I have so much to do right now that I can’t possibly absorb the conversation Dr. Shaw is having with his patient. Looking back, [I see] what a travesty that was. I would love to go back and be less problem-focused during the training. There was so much emphasis on getting the information as fast as you could, dealing with the patients efficiently, [and then] moving on, because there was always somebody else [who] needed you.
Doctors tend to operate at burnout level. Nobody taught us about work–life balance in residency. We were taught to take care of patients but not ourselves. No one asked me about my mental health.
Doctors have to find a safe place to talk about all they deal with at work. Not your poor spouse—you have to find somewhere to put your failures. Hopefully, the culture is changing; maybe these ideas are being introduced in medical schools today.
Stacy has been grappling with some of the same issues with which I have been struggling. That she is providing radiation to patients, rather than surgery, does not lessen the tremendous sense of responsibility she feels toward her patients. She worries about how she counsels them and has come to see that the impacts of treatments extend far beyond office visits. She learned, through her aunt Diane’s illness and death, the limits of her power to intervene and how hope for a better outcome caused her to distort data and interfere, rather than help.
Her stories also helped me see the limited influence that greater understanding provided her aunt in impacting the outcome of her illness. Even with a keen understanding of the facts, Diane was not able to appreciably alter the course of her brain cancer. I had felt, through Victoria’s illness, that greater understanding of the facts surrounding her leukemia would have helped her, but after conversations with Stacy I began to wonder how much of a difference this would have made and realized that my uneasiness was a reflection of my own frustration with my inability to alter the facts or to help my sister.
SEAN FISCHER
About ten months after Victoria’s death, I flew back to California to visit Pat and my nephews. Sean Fischer, my sister’s hematologist-oncologist at Saint John’s Medical Center, graciously agreed to meet with me.
I was eager to talk with Dr. Fischer and learn how it had been for him to care for Victoria. I wondered if he had found communication with her a challenge, what his relationship with her had been like, and how he managed the grief of losing a patient. Many doctors would refuse to meet with a deceased patient’s family members. They would choose to avoid a potentially angry confrontation with grieving family, especially if there was the perception of wrong, in which case they would be afraid to do so (or would have been advised by their attorney not to meet). Often, they might wish to avoid violating the patient’s confidentiality and refuse on that basis. Indeed, I had approached both Drs. Fischer and O’Donnell, but gave up trying to reach Dr. O’Donnell after many unanswered phone calls and emails explaining the nature of my request. I had always had a closer connection with Dr. Fischer than with Dr. O’Donnell, and he immediately understood what I was trying to accomplish with this book.
When I reread the transcript of my conversation with Sean, I discovered that I had spoken far more in this interview than in any of the others. Ostensibly, I had gone to his office to do research for this book but, in reality, the meeting became an experience of comfort and an expression of grief. None of the other interviews were with people who had known my sister. Sean had known her personally; indeed, he had discussed with her exactly the matters that I had hoped to broach, but could not: her perception of her mortality, the reality that her treatment was failing, and the imminence of her death.
Sean had known her from the outset, from before her diagnosis, and knew the day he had received the phone call from the pathologist telling him the bleak cytogenetic test results of her leukemia that she was unlikely to survive this illness. I wanted to understand how he had conveyed those results, how he had managed the tension that I had found so excruciating. I knew that he cared about Victoria—that much had been clear from earlier conversations.
This was the first, and only time, we met, although we had spoken many times before on the telephone and exchanged multiple text messages. I discovered that Sean and I both come from the DC area. He grew up in the Maryland suburbs and attended the University of Maryland, then went to Georgetown University, where he did a hematology-oncology fellowship. He got married, had kids, and moved to Los Angeles in 2005. For the past ten years, he has been in a general hematology-oncology practice with a primary focus on hematologic cancers. He also treats solid tumors, like lung cancer. Sean and his partners help cover each other’s practices. He has been focused on bone marrow disease since he came out of training.
I asked what it had been like to take care of Victoria.
I remember it pretty vividly. She was seeing a naturopath; holistic communities are plentiful out here, as you are probably aware. She was seeing somebody [whom] I know and respect, and somebody who felt this was a little outside of her spectrum. Victoria’s case was presented to me as somebody with anemia. As I reviewed her labs, I noted a couple of subtle abnormalities, to my recollection. She may have had a slightly elevated white blood cell count and some anemia. Based on what I saw, there were a lot of different possibilities, so I recommended that we do a workup to figure out what was going on.
It sounded like she had been on-and-off sick, a subacute illness, almost like viral infections that she had been dealing with on a chronic basis. She had been recovering and then feeling worse again. I remember getting the call from the pathologist [saying] that she exhibited circulating blasts on her peripheral smear and having to call her to say, “This is a bigger problem than we thought.”
Then I brought her into the office and went through the likely scenario of acute leukemia and how we typically manage it. I explained how we had to get more information, which would come from a bone marrow biopsy, and that once we knew what general subtype of acute leukemia we were dealing with, we would know how to initiate therapy.
We spoke about what it’s like to take care of patients who are focused on naturopathic remedies instead of conventional medical treatments.
It can be a problem. There are certainly patients here and in Los Angeles who feel very strongly about nonpharmacologic intervention for their illness. This was not a problem at all with Victoria because she understood. Victoria and Pat both grasped that this was a potentially life-altering diagnosis and it warranted serious treatment. She asked about other things that I could incorporate into the mix, which I am not utterly opposed to as long as they are deemed safe. She wanted to try to keep that aspect of her philosophy aligned with her general treatment, but it was not an obstacle in her case at all.
A patient I saw earlier today decided he was going to deal with his diagnosis of Hodgkin’s lymphoma by changing his diet and taking high doses of antioxidants. Of course, that didn’t work, and fortunately we were able to intervene at a point where there was no major impact on his stage and prognosis. But all too often, we will see that somebody comes in and has something very treatable, but by the time they explore other options, they come back with a different scenario down the road where it is not as treatable.
I recounted my impressions of the conversations I had with Sean surrounding Victoria’s diagnosis with acute leukemia and the specific subtype of monosomy 7, including the dismal prognosis associated with that diagnosis. We discussed how he shares information with patients and whether he thought Victoria accepted her diagnosis or was in denial.
We talked about my sister’s declining platelet count and whether this was an indication of early failure of the transplant. Sean said that Victoria was on an “infinite” number of medications and that drugs, rather than rejection, are typically the first thought for a dropping platelet count. I told him about a conversation with Dr. O’Donnell after Victoria died, in which she said, “Well, we really didn’t have anything else to offer he
r after the transplant failed,” because I wondered if this had been a lost opportunity for Victoria to confront her mortality and to have an honest conversation about death. They were starting chemotherapy, light chemo, because they couldn’t attack the transplant, but then my sister became septic and died as a result of infection. Neither Victoria nor Dr. O’Donnell were interested in having that direct discussion, so I wondered if they pursued treatments that were unlikely to be helpful partly as a way of avoiding the reality of her situation.
From the time of diagnosis to late stage in the game, I think your sister was smart enough to know that once she relapsed following transplant, there wasn’t much anyone could do. She seemed pretty well-informed, so I’m sure she knew how sick she was when she relapsed posttransplant. On the flip side, it may have been that she was holding on to hope. Sometimes doctors will say things like, “We don’t have anything right now, but we are expecting to open up a trial,” little things that doctors may just kind of throw off out of their heads, not knowing exactly when, or what, or if. Patients really take that to heart.
I think it is good to have a discussion of death and dying, but I think for some people that may not be helpful or constructive, and for a young person, especially with children, it is very different than being an older person who has lived a good life. We get into this debate about whether or not somebody would accept chemotherapy when they have no evidence of cancer, when they are young and they find themselves in this adjuvant treatment predicament. It is amazing, the differences of opinion.
Of course this is LA, and you see people [who] are absolutely opposed to chemotherapy, but there are younger people [who] might say, “If I am going to be around for an extra month to see my kids, then I am going to do anything and everything humanly possible.” Then there are older people who say, “If you are telling me that chemotherapy will increase my survival by 10 percent, I wouldn’t even think about it. I’m eighty years old.” I think for Victoria, that discussion may not have been productive. Perhaps for her family, but not necessarily for her. I don’t know.
Victoria was totally blindsided by the events that led to her dying. She had never developed a significant infection after her transplant, so neither she nor Pat had realized what it meant. They were just thinking, This is kind of standard business. If that hadn’t happened, would she have transitioned toward an acceptance that she was dying? Would they have signed up for clinical trials, or would they have had a conversation? I wanted to know what Sean does in similar situations.
Well, to your first point, I would say they probably didn’t recognize the pattern because for whatever reason, we were very lucky when we gave Victoria her induction and her reinduction that we didn’t run into febrile neutropenia and sepsis. This is a very common occurrence in transplant patients. So, we got lucky in that respect. I am sure that they went into the infectious risk, but Victoria had not experienced a lot of infections prior to that. I am sure the transplant team told her that with induction chemotherapy as part of transplant and conditioning, we completely wipe out the immune system. That is why, in the transplant setting, everybody is on countless numbers of antimicrobial prophylactic drugs. Infections do happen, even with those drugs.
At City of Hope, transplant patients are on antifungals, antibiotics, and antivirals. There is a whole protocol of prophylactic medications that she was on. What we would typically expect in that kind of scenario, in the event of a posttransplant relapse, is that they might try to reignite the graft with a donor lymphocyte infusion. It is obviously a very individualized scenario, but for a young, fit person, you would hope to tide her over until something better becomes available, understanding all of the nuances of clinical trial enrollment….
There is a huge barrier for patients with potentially terminal disease to get into clinical trials. The requirements are often very strict…. In Victoria’s situation, my guess is that they were probably trying to keep her transfusion requirements under control, keeping her infection-free until something better came along….
Somebody almost always dies of an infection. That is the most common cause of death in that scenario, for sure.
I asked Sean if he thought that we could do a better job as physicians. What did he think we could improve in terms of dealing with death, in terms of how we talk to and counsel patients?
I think the profession is starting to change, particularly when it comes to terminal illness, metastatic visceral malignancies, those kinds of things. We are starting to embrace the incorporation of the palliative care component from the time of diagnosis, as opposed to waiting for somebody to get very sick, which I think is a really good thing. This is based on the Dana Farber study that showed an improvement in survival with integration of early palliative care in end-stage lung cancer patients. The survival advantage was a couple of months, which is enough time to get a drug FDA-approved.
As oncologists, we feel like we are good at dealing with symptom management, but we clearly do not have enough time to delve into the psychosocial aspects of things, spending hours talking to patients, or going into patients’ homes, which palliative care can do.
I think you have to figure out how to segment your time, and I feel that for me, at least in the way I take care of my patients, getting involved in their lives and understanding them—maybe it’s not the nitty-gritty, but understanding the big-picture issues from a psychosocial standpoint—is very important. It helps with my general philosophy about how to manage that patient, how to discuss information with them, how to treat them. It is part of the process. I am not saying I do a good job with it, but I am saying that I try, because I never want to be one of those doctors who walks into a room and says, “Well, this is what you have. This is how we are going to treat it. Come in next week and we will start your chemo.” I saw this when I was training and throughout my career, and I just never wanted to practice like that. I would not want that approach for a family member of mine. I try to get to know my patients, and I try to empathize. If you don’t do that as an oncologist, you are probably not in the right field.
During Victoria’s treatment, Sean was generous with his time, allowing me to call him from North Carolina and ask questions. Had he ever found himself playing the stressful role of medical interface in his own family?
Not so much with my own family, but with my wife’s family—and I try not to get involved. I try to steer everybody in the right direction, because professionally, it is not who you want to be.
I know your position: “We have a doctor in the family, and he can help us translate some of this stuff.” First of all, you are a neurosurgeon, so it is hard for you to really weigh in on this. You can go and read about it and get a better understanding than your family would, but blood cancer is not something you deal with on a frequent basis. I thought at least I could give you some insights, speaking colleague to colleague but keeping it simple, just saying, “Well, you know, this is good, or this is bad.” Then when your family came to you with questions, you would be prepared to say, “I talked to the doctors, and this is kind of where we are.” Just hearing that from a physician carries more weight than going online.
After I learned how tortuous Victoria’s treatment was, I took a step back and thought, I prescribe all these things! I do all these surgeries on people, opening up their spines and skulls. It was a revelation to see my sister going through being treated. It made me much more aware of the impact of these medications, the drugs, the surgeries.
It does sometimes feel archaic to give very toxic chemicals to patients. I think that chemo certainly gets a bad rap, and there are certain diseases, including AML, where chemotherapy by itself can cure somebody. Take a look at testicular cancer; the therapy has not changed for thirty-plus years because there are really old chemo drugs that work quite well.
I have always felt that transplant is like the holy grail—trying to achieve graft-versus-leukemia without graft-versus-host. It is a really intense, primitive type of therapy, but I
think the breakthroughs are happening rather fast now. I think there will be significant changes in the way we practice now and before I retire. I think there will be some major breakthroughs. You really feel for patients where you see something dramatic happen on the clinical end, and yet they’re gone. You think, This patient would have been perfect for this new therapy.
I mean now with the breakthroughs in immunotherapy, and particularly in lung cancer, you see patients have dramatic responses. You find yourself wishing, If I had just had a crack at this with this drug, that patient could be here. That’s a hard thing.
One of the things that interested me as Victoria’s illness progressed was how she became suffused with gratitude. Despite the difficult situation she was in, she was immensely grateful. Sean also observed this in my sister.
Knowing there is a whole army of providers fighting for you, trying to make you better, does humble patients, and Victoria was certainly such a kind person that I’m not surprised.
I remember hearing Pat say that they were inundated with support…. I remember them saying, “We’re going to take this head-on, and we’re going to focus on what we need to do to get better.” What a fight she put on. It was pretty amazing.
It’s a very sobering profession; you remember the wonderful things about your patients. There was so much to appreciate with your sister.
I appreciated Sean’s thoughtfulness and consideration, his skill, and his availability. Throughout Victoria’s illness, he answered her questions, replying to texts and phone calls. I saw that he had been gentle and supportive with Victoria, tempering his responses to her questions, not forcing information on her she did not wish to hear. Because of their relationship and the many conversations they had, he did not think she was in denial about her mortality, but all along understood the severity of her leukemia.
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