Neurological diseases like Parkinson’s can profoundly transform a person’s spiritual life. These illnesses often alter not just how the body works, but how the mind functions, how much autonomy a person has, how they relate to loved ones. Many patients struggle to find meaning and purpose in the face of such deep existential loss. Modern medicine in the West has very little to say about such spiritual matters. But some doctors would like to change that.
A group of physicians and a patient with Parkinson’s recently jointly published a paper in the journal Neurology Clinical Practice that argues spiritual care should become a routine part of neurological care. The authors of the new paper cite a study of 1,000 adults that found that among patients 18 years old and older, 60 percent would like this kind of spiritual support in medical settings. But many neurologists lack the training to provide it, or feel uncomfortable asking their patients about such intimate and personal matters.
The researchers—from UCLA Health, the University of Colorado, Harvard Medical School, and Brown University—offer guidance to clinicians about how they can make spirituality a part of their care—what to watch for, what questions to ask, how to listen. It’s part of a larger movement that advocates for the provision of spiritual care for patients with all kinds of serious illnesses, which has been shown to improve both physical and mental health outcomes.
I recently spoke with patient co-author and blogger Kirk Hall, who has Parkinson’s, and lead author Indu Subramanian, a movement disorders neurologist at the David Geffen School of Medicine at UCLA. We talked about why spiritual care is so important to medicine, why neurologists are unprepared to discuss spiritual matters, how the doctor-patient relationship has changed over the past 50 years, and what simple things neurologists can do to ensure that their patients feel spiritually supported.
Do you think that patients with neurological conditions are more likely to want to talk to their doctors about their faith?
Kirk Hall: I think they’re looking for answers: “Why am I going through this?” And: “What can come out of it that’s beneficial, not only to me, but to other people as well?” You start thinking outside of yourself, and that’s a way of finding more meaning. When I first started down this road, I remember hearing that motor symptoms were the primary problem. But in the course of the next year or so, it became obvious that the non-motor symptoms were most impactful on quality of life for most people.
Indu Subramanian: Neurological diseases can really change a person’s sense of identity. This is especially true with something like Parkinson’s, which can affect not just the physical body—with motor symptoms like stiffness, tremor, and walking—but also memory, cognition, and mood. Spirituality can help people cope with these changes. It can help them not just make meaning out of it, but realign and reframe the story of who they are and how that changes with the disease—how they can move forward and find purpose.
Read more: “Did Grief Give Him Parkinson’s?”
The range of experiences that might qualify as spiritual is pretty vast, even beyond which religion you practice. Some people have specific relationships with nature or philosophy that could be considered spiritual. How can a neurologist come to terms with that kind of complexity in a way that’s helpful for patients?
Subramanian: Opening our minds to caring about it is a big first step. One of the things that I learned from this work is that in two simple questions, you can make somebody feel like you’re open to caring about this aspect of them—even if we’re from totally different faiths or mindsets. Even if the patient or the person living with the disease or their caregiver has no imminent need for spiritual support, just asking about this allows them to feel like I’m seeing them as a whole person. It helps build trust for other things, so they can bring not just their spiritual stuff, but their sexual dysfunction or their problems with their marriage or their children, or other taboo topics. I’m not here just to test your motor function, make you walk up and down,refill your prescription, and send you out. I really do care about you as a person more holistically. That’s a beautiful thing. Everyone wants to feel seen and heard. That’s part of the medicine, too.
Hall: Often, these diseases can make people feel isolated. Loneliness is a real issue.
Subramanian: We’re also just talking about asking two really simple questions: Is spirituality or faith important to you in thinking about your health or illness? And: Would you like to have someone to talk to you about spirituality or faith?
We also suggest they listen for phrases that may indicate a need for spiritual support, such as “What God would allow this?” Or: “Why is this happening to me?” Or: “I’ve lost touch with my faith since this diagnosis.” Maybe the neurologist doesn’t have the time to address these questions at that visit, but maybe there’s somebody in their office who might be able to explore it or a chaplain, if that’s available.
I was taught in med school that if somebody brings this type of stuff up—or even if I feel in the moment that I myself need something to comfort me in a time of crisis, where somebody died or I really need a moment to take care of my own spiritual health—that’s not acceptable. It’s separate from me and my white coat. It took 25 years of me not being in alignment with who I am outside of that white coat moment to really start talking about this as part of the medicine.
For people from other cultures, spirituality is often deeply embedded in what healthcare means. Their faith leaders are part of their healthcare teams. Why would I not care about that? It’s so bizarre. And then we have this whole field of palliative care and hospice where two minutes before somebody dies, I ask you, “What matters to you?” I was thinking, “This is crazy. Why am I learning all these cool things about my patient like five minutes before they pass away?” Because all of a sudden now it’s okay to talk about end-of-life scenarios. This felt very odd to me.
Hall: When you’re at that point, you ask yourself, “What’s wrong with this picture?”
Read more: “We Are a Part of Infinity”
Is there any risk that doctors could overstep, or any line that should be drawn?
Subramanian: If somebody says, “No,” or they really don’t want to go there, then you have to say, “Okay, no worries. That’s all good.” For some, maybe it’s just the pills. Everyone’s different. But what we’ve done is take a lot of the healing away from the connection that doctors have with their patients. And that’s a lot of why I went to med school. I saw my mother, who was a family doctor in the ’70s, get to know her families. Her happy place was to bring the baby into the family and to go to somebody’s house and do a house call when they couldn’t leave. It was this beautiful way of holistically caring for not just the person, but everybody in their family. As a family doctor, that was at least 50 percent of healthcare. A lot of healthcare took place in the home, where you saw the priest as well. Everyone was by the bedside. This was in a town in Canada: Hamilton, Ontario.
By the time I went into med school, there was certainly not as much care at home. You couldn’t bill for these visits. It became much more of an industry. Certainly in the United States, healthcare is very corporate. I worked at the VA, which is a little bit different, but everywhere you go in medicine is all about: how many visits, how many dollars, who’s reimbursing for this and that. Even these palliative care programs and hospice programs, a lot of it is through philanthropy. This is true even though we know that it does save money to not have patients get aggressive care if they don’t want it.
Now the pendulum has swung back. Many physicians, especially post-pandemic, realized the importance of social connection and social support. We saw how people didn’t feel good when they didn’t have each other, when they couldn’t go to church or meditate together. I’m also at a point in my career where I don’t care what anybody thinks. I know that there are enough people who care about it, that we got this paper published in the American Academy of Neurology. I’ve been leaning into patient voices, understanding the lived experience and including patients in my publications. They are obviously living with the disease, so why wouldn’t we try to include them?
In the paper, you write that engaging with the patient’s spirituality can even have healing effects for the doctors themselves. I was struck by that.
Subramanian: I’ve had the luck of training formally in yoga and mindfulness. I’ve been in a fellowship for a year with people who are like-minded, who are healthcare practitioners with those sorts of backgrounds at the New York Sun Center, which was pre-pandemic. A lot of us had been through what we would call moral injury scenarios, where we didn’t have enough resources to do the right thing. People were giving palliative care and hospice over the phone and on a tablet. Families couldn’t be there. We went from that to a philosophy of productivity, of more and more and more. The chance to really think about living in alignment within oneself, within one’s home, family environment, in our communities, and at the workplace is important.
What role can chaplains play in end-of-life care?
Subramanian: Chaplains are experienced at supporting people in these various critical time frames. They’re trained in deep listening, bearing witness to suffering. The chaplain doesn’t have to have a solution for you. So much of what doctors do is reactionary. You have to tell me that you’re in pain. I write a prescription for pain medicine. You go home and hang out for six months and come back and tell me if that medicine helped you or not. And then I go for the next symptom. What chaplains do is they say, “I don’t have anything to help you, but I’m here and I care about you.” And that’s okay.
Sometimes being present, being open, curious, really thinking about who that person is and providing that safe space and giving them compassion and hope: It’s something that we’ve gotten far away from. We need to get back to that. 
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Lead image: ngupakarti and Sajjad / Adobe Stock
