Grief Connects Us

by Joseph D. Stern

  STACY WENTWORTH

  Stacy Wentworth grew up in a small farming town in Illinois. The daughter of a fourth-generation farmer and a teacher, she completed college and medical school at Wake Forest University and worked as a radiation oncologist in Greensboro, North Carolina, where she was also the medical director of Survivorship and Wellness through the Cone Health Cancer Center. While working at Cone, she married Todd, the love of her life, and they live in the country with a menagerie of animals including three rescue dogs, a white cat, two fainting goats, and a large black horse named Sebastian.

  She and I worked together during the initial phase of building our brain tumor program. At one point, before Victoria became ill, Stacy told me the story of her aunt Diane, a nurse who went on to become the vice president of a small community hospital in Decatur, Illinois, and then developed a malignant brain tumor.

  Aunt Diane was the matriarch of Stacy’s family. The oldest sister, she was in charge of her parents’ healthcare. “In her retirement, she went from being a busy and effective administrator to running a DJ business and planning events, dances, weddings, and bar mitzvahs. She began training West Highland terriers, traveling all over the United States for dog agility competitions. She ended up a grand champion of dog agility at the Westminster level.”

  Diane’s husband, Paul, “was very much the yin to her yang.” In August 2011, on the road in California, she had spells of light-headedness and noticed a strong acidic smell. She was concerned because her Uncle Merle had died of a glioblastoma ten years before and those were the same symptoms he had described.

  On her father’s side, Stacy’s family are all robust farmers, who die either of brain tumors or of old age, at one hundred. Diane was concerned enough that when she returned home, she had a CT scan of her head and an EEG, which came back normal. She then had an MRI, which was not normal; it showed a large enhancing lesion in her left temporal lobe, spreading into the right side of the brain across the corpus callosum with a lot of edema. Diane and Paul knew what it was, and Stacy did, too: primary brain tumor.

  Diane was totally healthy. Paul had some heart issues a year prior, so they had both been losing weight and had radically changed their diet. She sent Stacy an email describing what she felt was a seizure.

  New-onset seizures in an adult are rare, I told her, and suggested that she was probably tired from being on the road so long. Looking back, I realize that was my first denial that something was very wrong.

  She knew exactly what she had, and I knew. I trained at Wake Forest with Ed Shaw, who is one of the world’s experts in brain tumors; 75 percent of the patients I saw as a resident had brain tumors. I was familiar with this story. My training program, also known as “Ed Shaw’s house,” had prepared me well in the realm of brain tumors and how to manage them.

  My aunt was sixty—in her prime. She had become burdened by her responsibilities as an administrator at the hospital, and you could see the weight lift off her shoulders when she retired. After her tests, she consulted her local physicians, one a neurosurgeon and one a medical oncologist. Ironically, Diane had hired them both during her tenure as VP. This was central Illinois, not exactly a brain tumor center of excellence and not anywhere close to an academic and research center.

  Still, Diane had a lot of confidence in these two doctors. I work at a community center as well, and I know that I take excellent care of my brain tumor patients. Yet my first impulse was to get her to a large renowned academic hospital. I’ve got to get her to Wake Forest, to the people I know, was my thinking. But this would also be ripping her away from the nursing staff in Decatur who loved her, and from the doctors, whom she trusted, as well as from friends and family and the dog community. That was really hard for me.

  I spoke with her neurosurgeon and her medical oncologist on the phone. We knew that she was going to have a subtotal resection, scheduled for October. She sent me an email; the subject read, “Day of surgery.” Beneath it, her message was succinct and clear. “Surgery will be at 7:30 on October 1. I am to be at the hospital at 6 a.m., first one on the schedule, which is exactly the way I want it. Love, Diane.”

  Diane recovered well following her surgery and began chemotherapy and radiation therapy. She did well for the first three weeks. Normally, Stacy would see her patients on a weekly basis. But with Diane, “I was in the weeds. I monitored her symptoms every day. What might the nausea mean? What were the implications of her constipation, her diarrhea, her lab values? I was not interpreting these things as a doctor; I could not get enough perspective on her situation. There were too many data points. It suddenly dawned on me that I didn’t know what my patients go through on a daily basis.”

  On her second follow-up scan Diane had progression of disease and she was experiencing more symptoms clinically. Still, Stacy clung to the idea that this represented “pseudoprogression,” an inflammatory reaction, rather than an aggressively growing cancer that was not responding to treatment. Her aunt’s scan had a lot of swelling and a lot of contrast enhancement (which indicates an aggressive tumor).

  At this point, Stacy intervened in Diane’s care and convinced her doctors to continue the temozolamide and to add bevacizumab in order to cut down on blood supply to the tumor, suggesting it was pseudoprogression. She sent them journal articles “to educate them.” At Wake Forest, this had been a well-understood phenomenon: just because a subsequent scan looked worse, it didn’t necessarily mean a recurrence of the disease. But, two months later, a third scan showed that the tumor was growing and that Stacy had been wrong.

  Stacy felt Diane gave up after the second scan. Despite changing chemotherapy, her aunt became an invalid. In January 2012, a year and a half before she died, she went on high doses of dexamethasone (a steroid to reduce swelling in her brain) and never came off of it. Diane’s doctors had started bevacizumab, per Stacy’s recommendations, but it did no good. Stacy saw a big change in Diane’s personality during this period.

  She wouldn’t open up to anyone. I think she and Paul had discussions about dying and what was going on, but she would not talk to the family about it. Sometimes we felt she was not trying, not fighting. She wouldn’t talk, she wouldn’t eat, she wouldn’t walk. She would come to family events, and after maybe ten or fifteen minutes she would have Paul take her home.

  My aunt knew what she was facing from the very beginning. The wind was taken out of her sails after that first post-treatment MRI. She knew what it meant but was willing to play along until the second scan. She was otherwise healthy, but she gave up, and then the disease started to ravage her. I looked through the emails that she started sending me and noticed she was confusing her words and losing her sentence structure. She was misspelling words, which was so unlike her. Clearly, the tumor was impairing her ability to write and communicate.

  Our family struggled because we wanted to push her; we wanted her to step up and be in charge and be “strong” like she always had been. My uncle, however, always supported her wishes. At one point, Diane wondered whether she should come to North Carolina for a second opinion. Her family was urging her to go, but I knew that with irinotecan and bevacizumab, there is only a 10 to 15 percent response rate. I knew there was nothing else out there, really.

  The deck was stacked against her, but there was this “swing for the fences” mentality. Why wasn’t she mad? Why wasn’t she fighting? In retrospect, [I see that] she knew this was a fight she could not win.

  Diane understood that balance between the benefits of a larger state-of-the-art health center and entrusting her care to her local team. The fact that she saw something in her community doctors meant something to her niece.

  At the end of the day, my aunt put her trust in her own physicians, whom she knew. After all, it was she who had hired them in the first place. And she was right. That was hard to swallow, because I think I was wrong about the pseudoprogression. Her tumor really was getting worse, and her poor test results were not just a reaction to the treatment. I told
her to stick with her local health team.

  This was Stacy’s first experience as a medical professional facing a serious family illness. “The competency of a physician takes on a new perspective when they are taking care of a family member,” she says.

  During the last month, they brought in hospice and she died at home, as was her wish. She had always wanted to be at her twin grandsons’ birthdays in California, so that year, she was able to throw a fourth-birthday party for them at her house in Illinois.

  She was able to celebrate her father’s ninetieth birthday at their house. I was just starting a busy practice here in Greensboro and was not able to go back and forth easily. I kept in touch by email and tried to advise her son when the best time to go home might be. She died in June, when everyone in our Greensboro practice happened to be on vacation, so I couldn’t go back for the funeral, which I think killed my father more than anything. The only time I could leave work was two weeks later. That was very difficult, but there was no one else to cover my patients. I couldn’t leave, and I also knew Diane would have understood and given me her blessing, but I underestimated how important it was to go home to support my father and the rest of my family.

  Two months later, Stacy’s grandfather died of a massive stroke. He came in from mowing the yard to have lunch and collapsed—her grandmother found him slumped over in his chair. Stacy got a call while she and her husband were on vacation. In their nineties, her grandparents lived independently on their farm and refused to move into town, but they took care of each other remarkably well.

  Stacy talked to the emergency room physician from their rented beach house. He wanted to transfer her grandfather to Peoria, where they could intervene and operate. The ER physician was pressuring her grandmother because she’d told him, “No. Absolutely not. He would not want that.”

  Her grandfather’s other brother, John, had died two years before of a massive stroke at the age of ninety-five. He had been in nursing facilities, uncommunicative, and her grandparents saw that and discussed their wishes between themselves, deciding they didn’t want heroic interventions.

  That day, Stacy’s grandfather spoke to her cousin Laura in the emergency room, wanting to know how her day at school had been, and then he never spoke or interacted with anyone again. He was transferred to Comfort Care on the same hall where Diane had been, which was hard for the whole family to revisit. Yet they had a good experience because the nurses and staff had known Diane well. Stacy felt her grandfather received excellent care.

  Her grandmother told her that he was unresponsive, so there wasn’t a rush to come home. “He is very comfortable. There are a million people here with him. We will tell you when the funeral is.” From a physician’s standpoint, Stacy knew that her grandfather was not going to wake up.

  My dad called: “No one is doing anything. I feel like he should be transferred; why aren’t we doing anything?” I had been all-hands-on-deck with Diane, but now it felt like it was time to drop the mike and walk off the stage. Letting my grandfather die peacefully was the best you could hope for in a ninety-year-old.

  I, too, was struggling with how differently we approach each critical situation in caregiving. There is an old adage: “Farmers can only die in the summer because the crops are already planted and there is no harvest.” At the funeral, everyone smiled at my grandfather’s timing. Even though he hadn’t been on a tractor in years, all his neighbors and farmer friends came to his funeral.

  These experiences have changed Stacy’s approach to her own patients. She told me she was now more aware of the side effects of what we choose or recommend at home on a day-to-day basis. She talks to patients in more detail than she used to about the pros and cons of the treatment decisions we make.

  A case in point was a patient she had been referred who had a cervical spine metastasis. It was a new diagnosis of metastatic cancer and she had a compression fracture, but it wasn’t causing symptoms, yet. The patient was an older woman who lived alone. Stacy was worried she would develop horrible esophagitis/pharyngitis, become dehydrated, contract a UTI, sepsis, or pneumonia, so she spent a lot of time with her going over the implications of treatment.

  The patient and her daughter elected to go forth with the radiation, but Stacy has become more aware that the majority of care goes on outside of the exam room. She now considers not just solving the problem in front of her, but also how the treatment will affect those who will live with the day-to-day consequences; she talks with patients earlier and more often about hospice and about what we can offer. Stacy also attempts to set realistic goals for patients and their families. She notes that none of her aunt’s doctors spoke with Diane at the beginning and said, “This is most likely a terminal illness. You have at most a year to live if we do X, Y, and Z. If we don’t do X, Y, and Z, you have a couple of months. What can we, as consultants, do to help you in that limited time frame?” She wants to use those consultants’ skills to help patients make informed decisions about their care.

  I think we need to practice both sets of skills, the one that treats the patients and the other that counsels them. Or we need to defer to social workers and palliative consults when we are not comfortable doing the counseling ourselves.

  I think what is important is where the light gets in. I gave my first eulogy for one of my patients, Treva. I didn’t do very well and ended up crying through most of it. She was one of the very few patients; she still gets me. I knew her and her kids very well. They would come to my office, dig through my desk, and get candy out of my drawers. Todd and I went to several of their soccer games; we bought her a T-shirt in Las Vegas. Treva was larger than life. She made us all believe that she could beat the odds. She had an incredible attitude and strong faith. I paid for her burial. I think occasionally some patients have to put a chink in your armor to keep you honest with yourself and with your feelings.

  I think occasionally I have to let patients in to make sure that I am not getting too far away from the reasons I chose this path in the first place. Do I risk burning out earlier? Is it unhealthy for me? Is it harder on my family? Is it harder on my husband? Maybe, but some patients, like Treva, refuse to see my armor.

  Stacy is not sure how useful all the treatments we provide for patients are. People want to go down swinging and are reluctant to opt for no treatment. A lot of women with metastatic breast cancer agree to radiation after mastectomy to prevent local recurrence even though distant organ metastases, such as to the liver, are more likely to kill them than a local recurrence. In young women with breast cancer, patients want to actively treat the cancer, in the hope that it won’t come back. “Their expressions say, You just want me to do nothing right now?”

  The way I have started to approach my patients whom I consider to have low cure rates is to say, “I have to tell you this. Imagine there are a hundred people like you in a room, but only ten of them (or whatever the statistical data shows) are going to be alive at the end of one, two, three years. Whether you are one of those ten or whether you are not, we don’t know. We are treating you as if you will be, but more likely than not, you won’t be. I am not going to beat you over the head with this, but the odds are not in your favor, and I hope that someday you come back five years from now and say, ‘Wentworth didn’t know what she was talking about. She told me I was going to die, and here I am watching the Masters.’”

  We need to have that conversation because there may be things you need to do, people you need to talk to, wrongs you need to make right, in that time frame. Dr. Richard McQuellon, another mentor from Wake Forest, calls it “living in mortal time,” which is the title of his book. It’s his term to describe how cancer patients live with illness, and maybe the same is true for those with other diseases as well. The aim is to have a sense when your life will end, and that is a difficult burden to bear. As a sentient being, to know the time of your impending death makes it almost impossible to live. For oncology patients, they have a hard time wrapping their minds around t
his. The rest of the world is churning along, unaware, and my patients are counting every day, every minute. I have to give them that information because I think it is unfair to hide behind that curtain.

  As Americans, we don’t talk about death. We put death away, in nursing homes and skilled nursing facilities. I certainly feel ill-equipped when it comes to [having] these conversations.

  Stacy is a supporter of living wills but feels they don’t go far enough. Rather than the signed document, “it’s the conversations leading up to [the living will] that are more significant.” She wishes we would offer classes or discussions about death, rather than a six-page booklet that the nurses are now required to have patients at the Cancer Center sign. She says she came home from her first rotation in medical school in the pediatric ICU and made her family sign DNR orders. She told her parents she did not want to have to intubate them, and she did not want to let them end up in a nursing home. This caused her parents to have a discussion and “it added clarity, especially for my brother, who is a very optimistic person. I hope that in twenty or thirty years, or whenever they die, he remembers that.”

  I asked her if she would do things differently as a practitioner and if she had ideas she would like to incorporate into her practice.

  I think medical training should occur in two steps. You should have to go back for training after being in practice for five years, at least, in radiation oncology … in radiation oncology you’re trying to drink from a fire hose just to get the information to treat cancer correctly. The subtleties of interpreting the clinical trials and studies, learning the techniques, the energy, and the physics, and [doing] symptom management—it is overwhelming.