Hoping

I’ve been thinking about the concept of hope. What it is, how we get it, why we need it, and what happens when we lose it. I’ve been living a roller coaster of hope, tempered by sadness, loss, and sometimes despair. My meditations on hope began six months ago, when my family and I encountered a maelstrom of events that seemed unstoppable. First, my elderly parents in an assisted living facility in Florida, got COVID. As a physician in New York, deeply involved with the care of ambulatory patients with COVID, I was concerned about the appropriateness and availability of treatment. My parents were terrified of the possible outcomes of the infection, and in characteristic fashion didn’t want to worry their son. Shortly thereafter, my anticoagulated father fell in the bathroom and hit his head. Seeing him bleeding on the floor, my mom, who has many medical issues herself, realized she’d never be able to live without him. Days later she was hospitalized with abdominal pain, diagnosed with an intestinal obstruction, and scheduled for emergency surgery. A COVID test, performed as part of the preoperative routine, was positive. An infectious disease specialist was consulted, who passionately shared his belief that COVID “is a political disease and not a real one.” His political agenda added anger to the stew of emotions I was experiencing. My mother went to the OR and succumbed to septic shock the following day.  

While mourning his wife’s passing, my dad became jaundiced and was diagnosed with cancer. I flew back to Florida to visit him shortly after his diagnosis, only to have to refer my mother-in-law to hospice after she sustained a massive stroke when I got back to New York. Juggling calls from Florida about my dad’s condition and treatment and discussing care for my mother-in-law with her hospice providers, while at the same time trying to support my wife and children, became a daily tightrope walk.  

My mother-in-law died of her stroke less than a week after she was referred to hospice. My father passed away a few short days after I finished the first draft of this essay. The late-night TV commercial huckster blares, “But wait, there’s more!” That was the track we seemed to be on. Except there was no free shipping, no second LED outdoor light just for paying shipping and handling. Only another trauma, another loss added to the litany. With every call and text, hope waxed and waned; it morphed and evolved. 

Hoping at first that whatever the disaster du jour proved to be, it was surmountable. And realizing, with the passage of time, that hope for cures had become false hope. Hope and optimism are things we talk about freely, maybe brazenly. “Hope for the best,” goes the saying, never really taking the time to consider what “best” may mean. Hope and optimism are also celebrated in song and music. “Don’t worry, be happy,” sang Bobby McFerrin. But worry is often a part of human experience, and the separation of worry from the experience of illness is often impossible. And “be happy?” For some, happiness is a baseline state of being, for others a daily struggle to achieve. Fleetwood Mac told us, “Don’t stop thinking about tomorrow. Don’t stop, it will soon be here. It will be here better than before . . . yesterday’s gone.” However, the belief that tomorrow will be better isn’t always clear. In fact, sometimes tomorrow’s likely reality makes us yearn for yesterday’s certainty.  

Hope and optimism are different things. Optimism is a state of mind, a predilection towards believing things will be all right. Hope, though, is built on a framework of reality that acknowledges that there are things that can be done to make things better, that there are actions that can be taken to improve a situation. Hope brings with it a willingness to undertake what’s needed to move forward. And when there’s no action left to take, the perpetuation of hope becomes a false hope.  

As a primary care internist, I’ve often been the one to deliver bad news to patients, their families, their loved ones. I’ve given diagnoses of cancer, heart failure, and many other awful things that will become an imminent threat to their lives. Sometimes the diagnosis isn’t surprising after a protracted diagnostic process. Many times, those diagnoses come out of the blue—a sudden heart attack, a stroke, a car accident. But at first blush, at the time of initial diagnosis, there’s usually hope—real, palpable, reality-based hope. It exists because we can discuss therapeutic choices, options, interventions, referrals. We can explore chemotherapy, surgery, radiation, marvelous new immunotherapies and other remarkable treatments that were the stuff of medical science fiction not long ago. We can say to a patient with honesty, “Yes, you’ve got a bad disease. But now we have treatments for it, and I can think of no reason why you wouldn’t benefit.” Physicians who have been at this for many years can look their patients in the eyes and explain that, while years ago their plight would have been dire, things are now different. They can look forward to happiness and the things that make their lives worth living.  

I’ve come to realize, though, that hope will morph and evolve over time. While initial diagnosis often offers reasonable hope for cure, there may come a time when recurrence of disease or a failed therapy forces us to hope for another chance. There are times when disease progression leaves us hoping for someone who can offer another opinion, a new perspective. And, eventually, when therapeutic options fail, and our bag of treatment tricks is empty, hope becomes something different. At the end of an illness, culminating in the approaching end of a life, hope for cure becomes hollow, optimism becomes futility. It’s fine to still have hope—but now it transforms into hope for peace and freedom from pain and suffering. There is hope for time to reflect and to heal the spirit.

The past six months have forced me to see illness and hope through the eyes of the patient and the patient’s family on an ongoing basis. It’s opened my eyes to the journey of illness, the continuum of care, and the continuum of hope. I’m learning to accept that not everyone is on the same timeline for this journey, that it’s possible to get stuck in a stage of hope that seems inappropriate for the stage of illness. I’m slowly coming to realize that one person cannot force upon another his or her perception of hope.

I’m also realizing how hard it is to witness the perpetuation of hope that’s become false. I’ve seen family members pursuing treatments that I knew would be futile and families who delay  hospice care because the goals of end-of-life care were misunderstood by family members. But I’ve found peace knowing that I did my best to guide people toward the best appropriate care. I’ve tried to reframe goals and show that hope can be kind and loving, even when what’s being hoped for isn’t a cure. We can all keep hoping and keep evolving. 

*This piece originally appeared in “Narrateur, Reflections on Caring.”

This piece expresses the views solely of the author. It does not necessarily represent the views of any organization, including Johns Hopkins Medicine.