During the first decade of my career, I would spend entire evenings at a patient's bedside, making detailed measurements of their heart function. The measurements were made about 20 times during the course of 8 hours on each of 3-5 consecutive days. Often, the patient would return for a similar series of measurements a short time later.
I devoted the time because I wanted to understand how the heart worked. But most of the time, I learned what the person was really like.
I saw how people responded to their illness, how they interacted with their spouses and children, and how they reacted to good news and bad news. I heard stories about what they had done in the past, what they were proud of, and their disappointments.
Patients with end-stage heart failure know that they are going to die. When I first started my research career, most of the people whom I cared for would die within a year. My goal was not to help them escape the inevitable. Instead, I wanted to reduce suffering and potentially add some valuable time to my patients' lives. Sometimes, I succeeded in doing so. But most of the time, I served a different function, one that I did not recognize until years afterwards.
I was a companion, a guide and a witness to the final days of my patients' existence.
The experience of becoming deathly ill is horrifically frightening. It is both physically difficult and emotionally overwhelming. Even though the end of life is a certainty, when the time of death is near, the most prominent feeling is often -- loneliness.
In my experience, it does not matter how close the person might be to their family or community. Even if the spouse, siblings or children keep a constant vigil at the bedside, they are typically focusing on their own impending loss. They often forget that the person who is dying is engulfed by a sense that they are about to enter a phase of irreversible loneliness. The loneliness will be so extreme that they will not even have their own consciousness to keep them company.
Arguably, no loneliness is worse than the solitude of nonexistence.
Faced with that inevitability, many people hope for a guide. Preferably, someone who has experience being a guide for others who have been in a similar set of circumstances.
What does a guide do? Above all, a guide listens. I probably did far more good listening than I did being a physician.
What did I hear?
I heard hundreds of stories. But the stories were never an autobiography. Instead, they represented a personalized synthesis of what their lives had meant, or perhaps more importantly, what they had intended it to mean.
Sometimes I asked questions. Did you really want to become a famous opera singer? How did it feel not talking to your only brother for 30 years? Do you really think that making all of that money in real estate helped you live a better life? It was hard for me to believe that someone whom I had met only a few days or weeks before would feel comfortable answering these questions or even confiding in me.
My position was totally different than that of the chaplain. I never played a spiritual role. The concept of a divinity or an afterlife never arose during my conversations. I never provided assurances of peace. And I was certainly not there to provide forgiveness or an opportunity for repentance.
Was I playing the role of Charon? In Greek mythology, Charon was the ferryman of Hades who carried souls of newly deceased across the river Styx that divided the world of the living from the world of the dead. As far as I know, Charon never engaged in any conversations and never got to know his passengers very well. So no, I was not Charon. And no one provided an for my troubles.
One conversation years ago summed it up nicely. After spending hours at the bedside making hemodynamic measurements, a patient asked: Well, Doctor, have you discovered what makes me tick?
I smiled. Of course, the answer was yes. But it had nothing to do with the cardiovascular measurements I was making. It had everything to do with my conversations with her. She had given me insight into her being that even some members of her own family had not been privileged to see.
Families were particularly amazed by my role, and seemed to greatly appreciate it. So when death inevitably ensued, I was there to support the transition. In many cases, I was invited to the funeral. And sometimes, I was asked to give a eulogy.
Even after my years of bedside research were over, I was still fascinated by my patients' stories. My office schedule always went overtime, much to the consternation of my staff. My in-hospital service rounds lasted for hours, not only due to teaching but because I loved talking to people. And I still kept getting invited to funerals.
There has been much written about whether physicians should attend funerals. Some claim that their presence is inappropriate or unwarranted. Attending a funeral means breaking the barrier that some physicians feel they need to keep between themselves and their patients to remain effective. .
Others suggest that their presence might betray their shortcomings. After all, if they had been successful in their role as physicians, the patients would still be alive. .
Still others think that their role is , whose presence is best kept brief. This misses the whole point. Going to a funeral is not about the physician. It is about the life of the person who died.
I understand that nurses attend funerals more commonly than physicians, and that among physicians, female physicians are more likely to attend than their male counterparts. If these differences are real, they are revealing. Many of us are emotionally detached from the patients we care for.
I attended funerals because they represented the celebration of a life. I was invited to funerals because the family thought that I could contribute to that celebration in a small way. And I was asked to give eulogies because I had served as a companion and witness during the final days and weeks of exceptional loneliness. So families thought that I had learned things that I might be able to share with everyone else.
I was often surprised when I attended funerals. Friends and relatives would tell stories that often seemed inconsistent with my own experiences with my patient. And I wondered: Why the differences? Did I see aspects of a life that no one else ever knew about or appreciated? Or were my patients telling me stories that they wanted the world to believe?
It really did not matter. The celebration of a life should not dwell only on accomplishments, but it should include feelings, dreams, unfulfilled ambitions, disappointments and impossible solutions, all of which make a life unique. We are the sum of not only what we do, but what we value, believe and imagine. Transmitting those values, beliefs and imaginations to others is the secret to immortality.
Today's rapid pace of medicine often provides little opportunity for the formation of durable and meaningful connections, and perhaps the number of physicians invited to funerals has declined. If that is the case, it is an enormous loss to medicine and to society at large.
Physicians go to medical school to learn about health; those who attend funerals learn about life.
Disclosures
Packer recently consulted for Actavis, Akcea, Amgen, AstraZeneca, Boehringer Ingelheim, Cardiorentis, Daiichi Sankyo, Gilead, J&J, Novo Nordisk, Pfizer, Sanofi, Synthetic Biologics, and Takeda. He chairs the EMPEROR Executive Committee for trials of empagliflozin for the treatment of heart failure. He was previously the co-PI of the PARADIGM-HF trial and serves on the Steering Committee of the PARAGON-HF trial, but has no financial relationship with Novartis.