A couple weeks ago, I was on a panel about the intersection of spirituality and serious illness care. (You can watch the recording here.) I was one of the speakers reacting to a landmark meta analysis, published in JAMA, led by Tracy Balboni, a researcher and radiation oncologist at the Dana-Farber Cancer Institute. After some beautiful opening words by Harvard Divinity School Dean David Hempton and our superstar moderator Howard Koh from the Harvard T. H. Chan School of Public Health, Tracy gave an overview of this massive research undertaking. It found high quality evidence that spiritual care was broadly associated with better serious illness outcomes. Probably not a surprise to all of you (the surprise to me was how huge a deal it was to get a paper on spirituality into JAMA; more on that in a minute).
The other reactors included Coalition friend Gloria White-Hammond - former pediatrician, current Harvard Divinity School fellow and co-pastor of the Bethel A.M.E Church in Boston. Gloria shared stories about her friend Margie and how important it was for her spirituality - a core part of her identity - to be seen and accepted by the clinicians treating her metastatic breast cancer.
Then Alison Jablonsky, head of chaplaincy at Tufts Medical Center, talked about a few patients she cared for who very pointedly said they were not religious OR spiritual...but how she was able to help them feel cared for during their inpatient stays. She asked questions like: What makes you feel safe? When do you feel connected to something bigger than you? When are you happy? And then she brought in paper chickens, real cats, and cozy living room furniture.
We also heard from David Rosmarin, a clinical psychologist at McLean, who, as an Orthodox Jewish man, proudly wears his yarmulka. And because of that,was often approached by patients asking him deep spiritual questions: “Why is God doing this to me? Why am I depressed again?” It happened so often he turned it into a program and a research career, integrating spiritual care into mental health care (check out his awesome Scientific American piece).
I, of course, talked about our Coalition’s consumer research. How we’ve heard over and over again that people want to be treated with humanity; that people value most from their clinicians a sense of collaboration, mutual respect, and empathy. Someone who believes them, makes them feel heard, understood and safe enough to share their whole selves - including their spirituality. Our results showed that the public sees these relational skills as the real mark of a great clinician. And, of course, we know that none of this is exclusive to serious illness (my one accidental laugh line: ‘when, exactly, are people sick or old enough to start treating them like human beings?’).
The whole evening left me buzzing (and not just because I drank one glass of wine on a totally empty stomach). I was struck by two things: language and power.
It was pretty clear from the start that we were all talking about the same thing with different words...and that many of our words are loaded. Ali noted that many people reject spiritual care because, while it is not inherently religious, it certainly sounds religious, and not all people identify with that. It’s a bit like how, back in 2019, we figured out that saying we’re going to talk about your ‘values, goals, and preferences’ sounded a lot like ‘you’re dying’ to people.
And then there was the power. As the discussion wore on, it became increasingly clear that there are “have” and “have not” sides of the healthcare system. Chaplains who can’t bill for their services. Palliative care that struggles with referrals, billing, and revenue. A shocking lack of research funding for the intersection of spiritual care and health (from David: on NIH Reporter, of the 90,000 projects funded since 2018, only 20 have the word spirituality in their abstract). And underneath it all, an overall recognition of the marginalization of our spiritual identities alongside race, class, culture, disability, and the many other aspects of us that make up our whole selves.
As I was recounting all of these swirling thoughts to the Coalition team the next day, another thing clicked into frame for me: a recent paper on ‘hope’ as a core element of the therapeutic relationship that should always be provided by clinicians (lead author is Tom Lee, Chief Medical Officer at Press Ganey and a former network President at MGB, back when it was Partners). It was a beautiful paper and it resonated so strongly with me. Again, it’s touching on the same stuff, but with different and also loaded language; I mean, there is a lot of baggage to shake from the word ‘hope’ in health care. It was also interesting how the authors contrasted this reliable sense of hope against mere ‘connection,’ because they defined connection as an intrinsic spark between particular patients and clinicians, rather than a skill that is learned and an experience that is purposefully created.
Which brings me to my last point (Still here?). We’ve got a lot of words circling the same stuff. Connection, hope, spirituality, empathy, dignity, humanity. They’re all imperfect and have different origins, baggage, and cultural connotations. But we’re going to have to align if we want to increase awareness, funding, training, and quality measurement that focuses on this important stuff. Unless we align - we meaning those of us trying to bring holistic humanity to health care – we are dividing our power. And divided we, and the patients and families we care for, will continue to “have not.”
(P.S. Part of this event also sparked long ago memories of the war that raged between science and religion in the early aughts, back when I was a science journalist in the UK. I recalled that homeopathy often showed up in that debate and how placebo controlled trials showed it was ineffective. “Hah HAH!” said the scientists. SEE!?!? But a more nuanced read showed that people often felt better after seeing homeopaths because they were there, for an hour or more, with a person who listened, believed them, made them feel safe, offered them hope, a connection, and some empathy...)
Photo Credit: Ernesto Brotto