I asked Sean to take me through Victoria’s transplant from his perspective.
When I first got that piece of information about her diagnosis, I was quite upset. I didn’t verbalize that I was upset, and I didn’t go into a lot of the immediate specifics about it, other than to say gingerly, “This may be something that we have to get you to a transplant center to discuss.”
As time went on, I reinforced that a little bit more, and now instead of the word “may,” the words “when you are scheduled” were what I used. I was communicating with Dr. O’Donnell at City of Hope. When I saw that prognostic feature come back, [I knew] that [Victoria’s] only chance at this point would be a successful transplant, barring any scientific breakthrough.
While I recognized that the possibility of relapse and failure was there, among our discussions it was understood that this was certainly no guarantee for a cure. This would be the only shot of long-term survival. I tried not to get into the weeds with percentages…. because she did not ask me. If she had asked, I would have told her, but I felt—again, that theme of short-term goals—it was my job to try to get her prepared. To use a sports analogy, I was the starting pitcher, and I was trying to get her to the closer. My job was just to keep the game in check until we were able to get her to City of Hope, to the ultimate therapy that would give her the best chance. It was week to week, month to month, the kind of goals that we are talking about.
I wondered how he manages the stress and the grief that come with his job. Did he think that sustained exposure to loss leads to physician burnout, and did he and his medical community take any steps to prevent burnout, which is currently estimated to affect 55 percent of physicians?
It is a major struggle. I think of the good: we cure so many people. We do well by so many patients, and there is so much positive energy that comes out of that aspect of the practice. You deal with people [whom] you get to know intimately. You know their families and their family dynamics. I feel like I go to work and I open myself up, and then when I leave, I have a family and four kids, and I have to turn it off. I have been able to do that.
You find an outlet. Exercise has always been a big outlet for me, and music, and things that take my mind away from the morbid details, but it is a real challenge. That is why there is such a high burnout rate in the oncology profession.
It is well-known in the field that there are lots of issues with physician substance abuse and doctors ending their careers abruptly because they can’t handle the stress. Actually, because of several cases of physician-reported substance abuse, there is a grief counseling program at the hospital. I don’t think many doctors use it. I know that because the grief counselor is a patient of mine. There is clearly a need, but I think people are reluctant to do it.
I think there are people [who] benefit from this kind of grief counseling. I can only speak for myself and say that the initial part of my career was challenging. I would take a patient’s death very personally from a professional standpoint, but also, I would have a hard time losing someone I cared about. I hate to say it, but over time, I think there has been a gradual numbing to this effect, where I now understand that I had nothing to do with the development of illness, that this was going to happen whether these people [had] ever met me or not.
I give them the best opportunity to get on the right path toward cure or palliation, but if my patient succumbs to their illness, I have learned to accept that while I am sad, I also understand that this is the cycle. Until there are major breakthroughs in the field, which hopefully will be coming soon, it is going to be this way.
I spoke with Sean about Matt Manning’s concept of emotional armor and wanted to know what steps he takes to avoid becoming overwhelmed by his job.
There is just not enough time in the day. You will see one more patient and you don’t get off until 10 p.m. There are doctors [who] do that every day, at the expense of themselves. With my own responsibilities to my family, I can’t do that. I feel an obligation to do both, so I try very hard to do everything I can for patients while I am here, and there are certain people, Victoria being one of them, for whom I will respond to an email or provide my cell phone [number], which I don’t do frequently. Just knowing that I am available is a major boost for patients.
In his own way, Sean has managed to come to terms with the emotional burdens of working as an oncologist and to balance his life as an engaged and vital human being. This is an example of emotional agility in action. I think he would probably say that it hasn’t been easy getting to this place, but he has successfully avoided the pitfalls of burnout and walling himself off emotionally. He can only do so much; he has accepted and come to terms with his limitations.
Gus Magrinat has adopted a similar balance. When I spoke with him about denial and how he chooses what information to share with his patient, his stance also reflects his own emotional agility. He begins by asking the patient what questions he or she might have.
If they say, “I want to know everything,” I say, “What other questions do you have?” If they do not ask, “How long am I going to live?” or “Is this curable?” then I know that they do not want to talk about it. My job is still to convey important information, and so what I say in stage IV cases is “You know, I do not like to tell you this, but it is important to me that you understand we do not know how to cure this disease at this point. We may know how to cure it in two years or five years, but today we cannot. So, the goal of treatment cannot be cure.” I leave it there.
Now, if the patient does ask, then I can give them a lot more information, and I always give the information as numerically as possible. “You have a fifty-fifty chance of being alive in six months. That is a very important thing for me to be able to say, because it qualifies you for hospice if you want to participate in hospice. Legally, that is important, but that does not mean you are going to live six months, and it does not mean that you are going to be dead in six months. It’s just a statistical thing.” So, I have those discussions.
I don’t feel it’s my job to hit them over the head with facts. I let them know the situation, and if they deny it, then that’s their choice. It is a problem for the families. They lie to the families. “My doctor said that I’m fine.” “I take my treatments, and everything is going well.” Then the family is in shock to hear she’s got five days. She knows it, but she doesn’t tell them.
I would translate it this way: “I know I’m going to die, but I don’t want to deal with it. I’m not denying, because denial means I’m not sick.” Denial is more like “I don’t need treatment. Why would I get treatment? I’m not sick.’” No. They’re not denying in the sense that they refuse treatment or don’t understand. They understand and do get treated, but they really don’t want to face it. They don’t want to discuss that. There are many ways of doing that. One of these [ways] is to say, “I’m going to be fine. Treatment’s great, and it’s working, and … I’m not worried.” Whatever their statement is, what it really means is “I don’t want to look at it.”
When physicians discard their self-protective stance, the result is richer relationships, greater connections with patients, and less burnout and compassion fatigue. Emotional agility is a far healthier strategy, and physicians need to embrace it through training, support, and community. Paradoxically, the answer to burnout and compassion fatigue is more, rather than less, compassion. In a way, Victoria’s denial of her own mortality was a form of self-protection similar to the emotional armor physicians adopt, although clearly from Sean Fischer’s perspective, it was far more nuanced than I realized. But her unwillingness to accept conflicting narratives and to balance between them did reflect a lack of emotional agility. Emotional agility would have allowed her to move between immediate treatment objectives and a wider picture of her disease. Just as physicians fail when they lack agility, she denied herself and her family the opportunity to say goodbye in the face of her leukemia recurrence and almost certain death.
Patients make
better decisions with more, rather than less information. Doctors and nurses navigate healthcare with greater ease than do patients without medical backgrounds. Partly, this reflects greater comfort with the complex and often nonintuitive systems of hospitals and medical care, but it also comes from familiarity with the science and medical basis for making the best possible decisions. The better informed patients are, the better the decisions they will make for themselves and their family members. It is helpful for patients to understand their situations and options to the best of their abilities rather than to blindly trust their doctors and medical teams. This is why education and preparation are so important. People need to make advance directives and difficult decisions before they are confronted with catastrophic illness, not during the tumult that ensues.
As Victoria’s journal and reactions to her care illustrate, the onset of a major health crisis is not always the best moment to become an educated patient, as she was in the grip of fear. Both Gus Magrinat and Sean Fischer have struggled with how much to tell their patients and how to deliver bad news. They have come to remarkably similar approaches: they follow the patient’s lead by giving as much information as he or she wants. They have learned that “hitting them over the head” doesn’t work. Sean worked within Victoria’s capacity to handle medical information and provided the optimism and support he rightly felt she craved. Emotional agility is an essential element for patients and practitioners alike in achieving a balance between the intense emotions they are suddenly experiencing and the ability to draw on the many resources that are available to them for the asking.
CHAPTER ELEVEN
enhancing palliative care: asking for a most benevolent outcome
To cure sometimes, to relieve often, to comfort always.
—EDWARD LIVINGSTON TRUDEAU
Early involvement of palliative care is essential in facilitating honest conversations and considering transitioning to less intensive treatments. In patients with advanced cancers, earlier consultation with palliative care, rather than waiting until the disease has even further progressed, leads to improved symptom and pain management, clarification of goals of care, and medically appropriate decision-making. This has been shown to lower costs, increase satisfaction in patients and their families, and shift care away from hospitals to home settings. Efforts to invite earlier consultation have proven effective, such as changing the name to “supportive care,” thereby avoiding the stigma often associated with the name “palliative care”; pushing palliative care upstream into the clinic; or the institution of Baylor’s doula program, in which trained volunteers provide support to dying patients.
Physicians are frequently reluctant to involve palliative care services for their patients, typically referring only late in an illness. Seventy percent of doctors state they have no training in palliative care, and many do not understand the distinction between palliative care and hospice care. They are reluctant to involve palliative care because they believe this is only appropriate within six months of anticipated death of the patient; whereas, in fact, palliative care can be invoked at the time of diagnosis. Palliative care is an interdisciplinary effort to improve the quality of life of patients of any age who have been diagnosed with a serious illness, as well as the lives of their families. Amy Kelley, MD, writing in the New England Journal of Medicine in 2015, defines the core components of palliative care as “the assessment and treatment of physical and psychological symptoms, identification of and support for spiritual distress, expert communication to establish goals of care and assist with complex medical decision making, and coordination of care.”
Doctors frequently do a poor job of assessing a patient’s overall circumstances, either because they do not have the time or because they do not consider this valuable information. Demographic factors like age, sex, and marital status are straightforward, but often the parts of a patient’s narrative that may profoundly inform decision-making and treatment outcomes remain unexplored.
The social aspects of patients’ lives are every bit as important as the medical ones. For many years, I have cared for a now-middle-aged man, Jake, who carries the diagnosis of Asperger’s syndrome. Jake is socially withdrawn and has spent much of his life in an institution. He developed seizures, which led to the diagnosis of an intermediate-grade brain tumor (an oligodendroglioma), which we removed and for which he subsequently received radiation therapy. He did well with these treatments and went to live with his elderly mother. Every few months I would see him in our brain tumor clinic along with Matt Manning. Together, we addressed the medical issues of his care and concerns about Jake’s seizures, which occur infrequently and are well controlled with antiepileptic medications.
Early on, we embedded a palliative care nurse practitioner in our multidisciplinary brain tumor clinic. We have found that this service not only improves the quality of care but also, surprisingly, reduces costs as we shift toward less intensive care more in keeping with patient desires. After our last visit, Mary Larach, the nurse practitioner, met with Jake and his mother. After Mary reported her findings, both Dr. Manning and I realized how little we understood Jake’s situation. Neither the tumor nor his seizures were their primary concern. His mother was terrified that she was becoming too old to care for Jake. His tenuous future kept her up at night, and she panicked about having to return her son to an institution he hated. Dr. Manning and I were focused on Jake’s tumor, but this was the least of Emily’s worries. In clinic, we tend to speak more than we listen. Mary, less concerned with a medical agenda, is freer to listen. Both aspects of care are important. The key is teamwork and the synthesis that comes with open communication.
Similarly, we recently cared for Leo, a young man with metastatic lung cancer to his brain, which we had treated with focused radiation (stereotactic radiosurgery). Leo seemed to be doing well after this treatment, regaining some of his energy and strength. He worked high up on storage tanks, cleaning them with toxic solvents. Dr. Manning and I both advised him to quit this job for the time being. Leo’s balance was impaired, and we were afraid that he would fall from one of these tanks and be seriously injured. What neither of us grasped was the impact of Leo’s home situation on his treatment decisions. He understood he had lung cancer and was not afraid to die. It turns out that he has five children, all from different mothers, and owes child support for each of them. He was convinced that he would go to jail if he stopped paying child support. The money he would receive from disability if he stopped working would not begin to cover his financial obligations, let alone his personal expenses. The brain tumor was a sideshow to his more pressing concerns.
Palliative care services have grown 150 percent in the last few years but are still unevenly available in the United States. There are regional disparities (more common in the Northeast than in the South), disparities related to the size of hospitals (more common in larger hospitals with more than 300 beds than in smaller hospitals), and also disparities based on socioeconomic and racial status of patients. Not only is there a lack of training and awareness of the value of palliative care services for patients among all doctors, but also there is a shortage of palliative care physicians across the United States. Palliative care services are often available in hospitals, but there is an unmet need among the 1.8 million patients in long-term-care facilities and among those patients who are treated in outpatient settings in the community.
Awareness of the importance of palliative care has improved in the management of patients with fatal or relentlessly debilitating diseases, such as cancer and dementia. Increased availability of these services has led to decreased in-hospital deaths and better communication with patients and their families, but palliative care is not as widely available in many chronic diseases, such as kidney failure, pulmonary diseases, and heart failure. The rates of in-hospital death and the involvement of palliative care services lags behind in these diagnoses.
How Victoria faced her diagnosis of AML, choosing life over death and optin
g for aggressive treatment despite long odds, is, surprisingly, a typical reaction to this catastrophic diagnosis. A Duke University study discusses the impact of a diagnosis of AML on thirty-two newly diagnosed patients, who were interviewed. “Four main themes emerged: (a) shock and suddenness, (b) difficulty processing information, (c) poor communication, and (d) uncertainty. Patients frequently described their diagnosis as shocking. They also felt that the amount of information was overwhelming and too difficult to process, which negatively impacted their understanding. Patients frequently described a lack of emotional support from clinicians and described uncertainty about their prognosis, the number and nature of available treatments, and what to expect from treatment.”
While AML is potentially curable in favorable groups or in younger patients, “high risk groups have a five year survival of under 10 percent, akin to that of metastatic pancreatic cancer. Despite this, patients with AML are often treated more aggressively than patients with advanced solid tumors, presumably due to the chance of cure. They are, therefore, less likely to use specialist palliative care or hospice services and are more likely to die in the hospital.” The article goes on to describe how patients will often opt for more intensive therapies given in a hospital with higher risk of complication and death for the outside chance of a cure, rather than less intensive therapies as an outpatient. Patients diagnosed with AML face unique stresses, due both to the frequent need to be transferred to academic centers far from their homes and the rapidity of the illness, the latter necessitating “a compressed timeline in which to make decisions.” They are often overwhelmed by the suddenness of the diagnosis and frequently “dichotomize treatment options into either ‘do or die,’ when there [are] actually several available treatment options of varying intensity and risk.”
Grief Connects Us Page 23