It’s important to get the medicine and the science right, but we must not lose sight of that human connection between patient and caregiver, emphasized Robert K. Massie, Jr, PhD, MA, of the Society for Progress. Massie will speak during the virtual ASH meeting.
It’s important to get the medicine and the science right, but we must not lose sight of that human connection between patient and caregiver, emphasized Robert K. Massie, Jr, PhD, MA, of the Society for Progress, who has also been an Episcopal minister; a professor at Harvard Divinity School; a nonprofit CEO, specializing on environmental questions; the author of 3 books; and a former Democratic candidate for governor of Massachusetts. Massie was born with severe factor VIII hemophilia in August 1956, later contracting HIV in 1978, as well as hepatitis C. Massie is speaking at this year's meeting of the American Society of Hematology.
How can physicians better focus on their patients’ journeys with these diseases instead of being hyperfocused on clinical outcomes, whether setbacks or leaps forward?
Well, the first thing I would like to say is that we've seen a lot of improvement over the last 40 or 50 years. You know, when I was young, and I don't want to blame any individual person, the procedures and the rules were often pretty brutal. To give you an example, I was often taken away from my parents when I was 2 years old and had things like a lumbar puncture or infusions and then just dropped in a bed, and my mother's down the hall trying to get back to me, and I'm crying and miserable.
And there were rules: you weren't allowed to see your children, were not allowed to spend the night with them. This was an unnecessarily brutal system for an understanding of science—a very limited understanding of science. Now, over time, we have seen medical schools, nursing schools, many other people try to ask that question about what is the patient's perspective.
Now, it's still hard. And I have some sympathy, having watched friends of mine become doctors—I thought about becoming a doctor—and watching their training. And of course, the first thing that a physician in training wants to do is to get the science right and the medicine right. There is a lot of stuff to know. So it's very easy to get caught up in the details of a particular case or situation, and especially if you're sleep deprived, as so many young doctors are. So there can be a very deep, and sometimes excessive, focus on the technical side, although of course, I don't know any patient who wants the doctors to screw up technically.
However, one of the very important pieces that we now know is that healing comes from a lot of different things. And one of them is from a human connection between a patient and a caregiver. Not one that weighs people down and invades people's personal lives and starts to cross boundaries that shouldn't be crossed. But just the understanding that everybody in the room, so to speak, is a human being with uncertainties, with anxieties. Particularly, patients who are looking as best they can, sometimes with very limited training, for whatever signal of hope or clarity they can get.
And doctors can often provide that simply by slowing down and just sitting with a patient for a few minutes—I know they’re under tremendous pressure—and saying things like, “You know, I know this is really difficult. We're going to do everything we can. I want to be sure all your questions are answered.” Just something that personalizes it. The very best doctors I've had gave me their personal phone numbers, and with the knowledge that I respected them so much and respected their time that I almost never use these. It was really only in a very rare case of medical or psychological crisis that I would ever call. But that sense of connection that you have is very powerful.
One of the things I would strongly urge is that doctors and those training—all medical people—take the time to have their students read about or watch things that would allow them to understand. Way back in 1975, when I was only 18 years old, my parents wrote a book called Journey, which was written by the 2 of them in alternating chapters with their different voices—mother's perspective, father's perspective—about what it was like to raise a child with a severe genetic illness in the late 1950s, '60s, early '70s.
This book had a huge impact. And for many, many years, I used to run into people, particularly nurses, but also doctors, who would say, “Oh, I read about you. I read about your parents when I was in training.” And there's no question that just that one book help people realize what it's like to be shuffled between different doctors’ offices who speak different languages, and where there's huge amount of uncertainty with a wide range of personalities, and you name it. Now, fortunately, there are quite a few such books and so forth.
The reality is, there's plenty to learn, and it's not that hard anymore. You just have to have the desire to know and the willingness to ask questions of people, and to understand. And I think [the] older doctors become, they realize that even with the extraordinary powers of science, there's only so much anybody can do. And the final connection that allows us to deal with our fragility and, ultimately, our mortality is the human connection. And that's something I hope no person engaged in medical caregiving ever forgets.