Adam O. Goldstein
North Carolina, USA
Details have been changed to protect patient confidentiality.
Photography by JMS2
Bill, a dentist and a patient of mine, died in his sleep at age 52. I did not know Bill as well as many patients, as we had only seen each other four times over five months, and he had few apparent urgent needs. We did however, spend several hours talking about his views on health and life while living, and since he died, I learned so much more about what makes him incredibly unique, ultimately leading me to pick up a pen and write, much as he might have done if he were still alive. Understanding Bill’s outlook on life, and coming to terms with his death, are lasting legacies for physicians and all those who practice healing arts.
Like many doctors, dentists, or lawyers I know, Bill had strong opinions about the issues of our day. He proudly worked for the State, wrote advisory opinions on dental cases, and conducted interviews for dental magazines. With the keen eye of an aesthetic dentist, he also knew a great deal about health promotion, the practice of medicine, epidemiology, and public health.
At Bill’s initial visit, we had an hour-long encounter, full of complex discussions about his work and views on health care, including patient values, autonomy, and respect. In fact, he started the encounter saying he did not like to come to doctors as he felt they rarely listened to his views. Worried about his poorly treated hypertension, a mutual friend referred him to me, so I felt a little added pressure to try and meet all expectations.
Our first encounter moved on to Bill’s medical history that included high blood pressure, some new arthritis in his hands, untreated elevated lipids, obesity and an elevated Prostate-Specific Antigen (PSA) level. He also had pain in his knee after running, something I found surprising since he was quite overweight. When I showed surprise through my facial expressions, Bill told me that he used to compete in triathlons only ten years previously.
For his hypertension, Bill had previously taken an angiotensin-converting enzyme (ACE) inhibitor and a beta blocker, but he stopped these when told his blood pressure had become “normal”, combined with a negative stress test and Holter monitor. This story is one I had unfortunately heard many times previously, regardless of the patient’s socioeconomic status. Bill did not smoke, and he had no cardiac symptoms. In clinic, his blood pressure was 180/92.
We discussed my recommendations for him to resume the beta blocker and ACE inhibitor, starting at low doses. On a follow-up visit, we increased the dose of his beta blocker, and six weeks later, his blood pressure was 130/80. On telling Bill how happy I was that his blood pressure had decreased, he told me about a physician he had seen in the distant past who told him that he was at increased risk of an early and sudden death. Assuring him that physicians cannot accurately predict patient mortality so easily, and perhaps falsely reassured that his blood pressure had normalized quickly, I felt pretty good when Bill indicated he was now willing to see a few specialists, including a urologist to discuss the elevated PSA, a rheumatologist for the hand arthritis he was experiencing, and an orthopedic surgeon for a suspected torn meniscus. Unfortunately, while he made all these specialty appointments, he failed to see me the next time because he died suddenly in his sleep two months later.
Elisabeth Kubler-Ross in 1969 talked about five stages of grief for how people deal with death and tragedy. Those facing loss undergo denial, anger, bargaining, depression, and ultimately acceptance. In today’s medical research, it is easy to find monographs that talk about how to process the death of a child, spouse, parent, sibling, and even a pet. However, little research guides a physician in the grieving process for a patient who dies. Every clinician eventually faces, often dozens of times in their career, this grieving process. In thinking about Bill’s death, I realized that the difficult feelings of loss I experienced, and the insights I ultimately obtained, are ones that most clinicians may experience in their grieving over patients. While the feelings of loss may have similarities from one patient to another, the insights will clearly differ from every patient.
My first feeling, as expected, involved shock and disbelief over the sudden loss. I saw little that made Bill initially different from hundreds of other patients with similar health histories. In fact, most patients have higher burdens of illness. After a day, the initial shock parted to allow a flood of negative emotions to enter, such as grief, sadness, anger, fear, guilt, and regret. Perhaps the overriding emotion that subsequently infused my conscious mind was confusion. When a family member unexpectedly dies, we all want to naturally know what happened, or if anyone could have done anything differently. Ditto for physicians and their patients who die unexpectedly.
Bill’s sudden death seemed more tragic than those expected from our patients with end stage illness, such as cancer. With our patients who suffer from chronic illness, we slowly see life leaving, have our chances to say goodbye, and usually come to grip with their inevitable decline. In instances where our patients die through the fault of others, such as car accidents, our grief and anger initially channel to others, away from ourselves. While such losses of patients seem unfair, we do not usually blame ourselves. A sudden death of a young patient that occurs while sleeping seems particularly confusing, as it does not allow for goodbyes, for time to process impending death, or for shifting blame to others.
Perhaps the confusion stemmed from my similarity to Bill and the fear of my own mortality. Like him, I was in my 40s and had teenage children. Like Bill’s family, my family also framed my daily experience, one that usually started with “good morning” and ended with evening prayers. When I went to bed, I rarely thought about the frailty of life or the possibility of not awakening. Despite being a physician, I found that Bill’s death forced thoughts of mortality to interrupt my usual nightly routines and even my dreams.
As fear gave way to guilt, I also wondered if I missed something, if avoidable clues existed that Bill might die suddenly, or if I could I have intervened differently. I thought back to our first visit six months previously when Bill mentioned that doctors told him once that he might die suddenly because of left ventricular hypertrophy and hypertension. After taking the prescribed medication then, an echocardiogram apparently showed no damage, so Bill stopped taking the medicine and quit seeing his cardiologist and internist. He said they did not take the time to respect his views, however different from theirs. He also refused at that time to have an elevated PSA level worked up for the same reason, saying, “If I am going to die young anyway, what does it matter if I have prostate cancer?”
As a physician, I regretted how little I knew about Bill’s life outside of the medical narrative. This regret operated not through the usual channels, such as an ability to intervene more aggressively or an inability to say goodbye. I know I am a caring physician who believes passionately in primary care, provides good continuity of care, asks open-ended questions of patients, regularly reads about new medical knowledge, and readily admits my lack of knowledge when appropriate. Rather, I realized that despite almost 20 years of medical practice, I fell prey to asking medical questions a certain way, enacting the encounter from start to finish with little variation: “What brings you to the clinic today,” “Tell me about your concerns,” or “What do you think is going on?”
Attending Bill’s funeral began to offer both consolation and insight. I learned a good deal about his life narrative, much more than I learned in all of our brief medical encounters combined. I learned about Bill’s love of the outdoors, having traveled across the South, with an upcoming book about these travels set for publication. In the introduction to the book, he wrote about his need to seek refuge from his work in nature. Indeed, his relationship with nature is evident throughout his prose; it is easy to understand that while Bill’s profession involved dentistry, his passion involved nature.
Bill’s other passion included his family. Those speaking at his funeral discussed his children and their cultural endeavors, where Bill enthusiastically supported them from the audience, encouraging other parents to applaud vigorously. Bill’s minister summed up much of this passion when he simply said, “Bill was passionate about life, about exercise, good food, and people.” Listening to these tales, I easily brought back on my own encounters with Bill’s quirky smile, resonating laugh, and his ability to ask great questions. These traits were little clues to his love of particulars in life.
After Bill’s funeral, I sought consolation from my rabbi to better understand the mysteries of life and death that clinicians must deal with on a regular basis. We discussed death as part of life that inevitably brings confusion and fear. We discussed that when people die, remembering the good about those who have died honors their memory and creates a living legacy for all those who follow.
Thinking through aspects of Bill’s life and death, I realized that he left two living legacies to me and other clinicians. First, Bill inculcated daily celebrations of life with family, friends, and nature that made him truly happy. Many clinicians like me who traditionally operate through illness narratives would not usually uncover such celebrations while our patients were alive. One way, however, to honor Bill’s legacy is by asking not only about patient illness when entering an exam room, but also about happiness: “What brings joy to you in life?”
To be better clinicians, we also need paradigms to help us better cope with our patients’ deaths. Bill’s second legacy teaches us that by reflecting on more complete patient narratives that include both illness and happiness, we will form more complete, healing relationships. Stronger therapeutic relationships can certainly help us to better support patients like Bill when their views and decisions about health and illness differ from our own, or to decipher subtle changes in their health where earlier interventions can occur. Regardless of such outcomes, a stronger narrative gives us a way to move forward from our own loss, grief, and confusion, to a place where we eventually see meaning, hope, and renewed healing.
ADAM O. GOLDSTEIN, MD, MPH, is a professor of Family Medicine at the University of North Carolina (UNC) School of Medicine in Chapel Hill, North Carolina. He currently mentors medical students, residents, and fellows, and teaches a course on Advanced Leadership Skills in Community Service. In addition, he is the founder and co-host of UNC Health Care’s Your Health, a syndicated, weekly one hour radio show on health, healing, medical care, and ethics.
Highlighted in Frontispiece Fall 2013 – Volume 5, Issue 4
Fall 2013 | Sections | End of Life