My grandfather was the patriarch of his family, at the center of a tightknit Lebanese immigrant community in Toronto, Canada. Some of my warmest childhood memories are from Sundays at my grandparents’ home, where there was always family, community, and delicious food. Both in their mid-seventies, they remained exceptionally active and maintained an impressive social calendar. From my perspective as barely a teenager, it somehow seemed that family life would go on forever in this way. So, it is not surprising that I remember vividly when my grandfather first became ill. He had learned from his doctor that his kidneys were failing, and soon after his diagnosis he required dialysis. His warm and full cheeks began to sink as he lost weight over the ensuing months. Visits to the doctor and hospital became more frequent. He struggled to attend family events. One day, he was feeling unwell, and was admitted to the hospital. After a few days, I remember sitting in the hospital lobby with my family. A “Code Blue” was called overhead, and we soon learned what we most feared: his heart had stopped beating and that doctors were trying to resuscitate him. Ultimately, they were unsuccessful.
Now many years later, I have led countless resuscitations as a critical care physician. The patient’s room is filled with a coordinated team working for a solitary goal of restoring life. However, this comes at a cost of broken ribs from cardiopulmonary resuscitation, large and uncomfortable intravenous lines, and generally (but not always) a lack of presence of family members in the room. I sometimes reflect on what my grandfather’s last moments were like. A man who had lived his life surrounded by family died surrounded by strangers.
Just two years later, my grandmother was diagnosed with a glioblastoma, a devastating malignant brain tumor, and one of the worst as far as cancers go: aggressive, uniformly fatal, and a cancer for which there are limited treatment options. She was referred to an oncologist and received radiation. The tumor continued its steady, relentless growth. It was clear there were no more treatment options available. She slowly became bedridden and was unable to eat. Our family together made a decision to focus on her comfort rather than aggressive life-sustaining treatments. We were all able to spend quality and meaningful time together in a home that was the center of family life. She passed away in the bed she had slept in for decades, comfortable and surrounded by her family.
In my practice, I have witnessed individuals go down each of these paths, and in empathizing with each patient and family, I often reflect on my grandparents. Why did two people with similar ideals and life philosophy die in such dramatically different ways?
First, I have no doubt that my family’s experience with my grandfather’s death provided a new perspective on the dying process and the limitations that medical treatments can provide. To my knowledge, prognosis was not discussed with my grandfather, and no physician ever had a goals of care conversation with him about what do if his heart were to stop beating suddenly.
I believe his death empowered my grandmother and her children to be more proactive, to ask about the benefits and alternatives to treatments, and to seek options for care that were more consistent with my grandmother’s preferences when it became clear there were no other treatment options available to her. And this parallels my experience in caring for individuals with a sudden devastating illness in the intensive care unit, where goals of care conversations are a part of everyday life. I have often had to speak with families who are in the difficult position of making health care decisions for their loved one. In many cases these are conversations about whether or not to continue life-sustaining treatments such as mechanical ventilators. It is not infrequent for families and care providers to be in the dark about an individual’s care preferences. In the absence of this information, surrogate decision makers sometimes rely on past experiences when making these difficult decisions. The reflections go something like this: “I saw my uncle go through two weeks on a ventilator; he was uncomfortable and couldn’t talk to his family. I don’t think my father would want that.” This is the power of storytelling.
Nearly two decades ago, when the TV series ER was on air, viewers were surveyed about various medical topics covered during recent episodes — including emergency contraception and human papilloma virus. Pre- and post-episode surveys showed substantial increases in knowledge and awareness of these conditions among the lay public and an increase in the likelihood that individuals would talk with their doctors about the topic — all stemming from the simple act of entertainment storytelling. There is much opportunity to leverage storytelling to communicate complex topics; an elucidating paper on the topic discusses how human beings are predisposed to learn complex subject matter in a narrative format. Therefore, it can be an ideal way to efficiently impart complex topics to a layperson.
The risk of storytelling is that the audience may draw a conclusion from a narrative that is not completely relevant or accurate in the current context, particularly if the story is being told from the perspective of another layperson. In these cases, it is the job of the care team to ensure that the context of the previous experience is understood, and that the lessons are applied to the current context in an objective way.
Disease and Prognosis
The second reason for the disparity in my grandparents’ deaths has to do with the diagnosis. My grandfather had kidney failure; my grandmother had cancer. I believe this was a critical factor in how discussions and decisions around end-of-life care were made. Our societal perceptions of cancer default to those of doom. (In an era of novel cancer therapies, this could not be farther from the truth.) On the other hand, dialysis is perceived as a perpetual, though laborious, substitute for a failed organ. And although it is well established that many conditions have a similar prognosis to that of advanced cancer, health care providers (in my experience) typically think more about discussing treatment preferences and goals of care with patients who have cancer than patients with other diagnoses.
This observation has also been described in the literature. Take for example a study of American veterans suffering from a variety of diseases including cancer, dementia, end-stage renal disease (ESRD), cardiopulmonary failure, and frailty. The investigators reviewed indicators of high-quality care at the end of life — such as palliative care consultation, presence of a do-not-resuscitate order (which suggests a conversation about care preferences and goals occurred), and location of death. While 74 percent of decedents with cancer had a palliative care consultation, this was only true for 60 percent of patients with dementia, 50 percent of patients with ESRD, and 47 percent of patients with cardiopulmonary disease. Death in the intensive care unit—which is associated with worse family-reported end-of-life care—occurred among 9-13 percent of patients with cancer and dementia, but 32-37 percent of patients with all other diagnoses. According to the National Hospice and Palliative Care Organization, in 2013 36 percent of individuals admitted to hospice had a diagnosis of cancer while only 3 percent were admitted with a diagnosis of ESRD.
The dichotomous endings of my grandparents’ lives highlight the complexities of advance care planning and end-of-life care. These conversations are difficult, there are significant educational gaps on the part of patients and providers, and often times providers do not know the care preferences for the patients they are tasked with treating — often in time-sensitive situations. There are opportunities for us all to ensure that we consider an individual’s likely prognosis, regardless of the diagnosis. There are also opportunities to use creative techniques like storytelling to help patients and families understand the complex choices before them. We as individuals, family members, and care providers all must feel ownership in ensuring that care preferences are understood and honored.