We recently spoke with Denah Joseph, a clinical chaplain who works with the Palliative Care team to provide spiritual services to patients with serious illness. In addition, Denah leads efforts to address burnout among healthcare providers.
Denah, tell us about yourself.
My first career was actually in clinical psychology, but I’ve been a Palliative Care chaplain for 15 years. I also teach skill-building for providers around burnout and resilience.
What brought you to Palliative Care?
I’ve lost three sisters and a partner to breast cancer, and my dad died when I was quite young, so I’ve had a lot of exposure to loss. The other big thread in my life has been my spiritual practice. My father was an Orthodox Jew, but exceptionally ecumenical for his time. His first wife was Irish Catholic, and my father used to go to church, sit, kneel, and say the rosary, and light candles for his Catholic friends. Three hundred nuns from the local diocese all came to my dad’s funeral. It was really remarkable.
I’ve been a practicing Buddhist since I was 19. When I went back to school to become a chaplain I wanted to bring more of my spiritual interest into counseling work, so chaplaincy seemed like a really interesting way to do that.
Tell us more about what a chaplain actually does.
As a field, healthcare chaplaincy is relatively new. The old model was if a person was religious, somebody would arrange for a rabbi or an imam or a priest to come into the hospital and take care of the pastoral needs of that patient. In the last 10 to 15 years, the consensus guidelines for quality patient care now include addressing the spiritual dimension of patients’ lives. Instead of relying on volunteers from the community with no quality assurance, it’s required that any hospital over 200 beds have spiritual care available. In order to be a board-certified chaplain, you need to be endorsed by a faith community, and have an advanced degree in either Pastoral Counseling or Theology.
Everybody has spiritual needs even if they don’t use that word “spiritual.” We define it in terms of meaning, relationships, impact on one’s life, hope, fears, reconciliation issues, legacy issues, etc. Approximately 80% of patients want their physicians to understand a little bit about their spiritual/existential/emotional world, and only 20% of doctors ask—so there’s a really big gap. This can be a 5-minute conversation about who are you, what’s important to you, what’s the biggest struggle with your illness that is not medically oriented.
Can you share a patient encounter where you learned something?
Recently I cared for a patient whose wish was to survive to see his only son graduate from college. His wife and son both were like, “You’ve got to hang in there, Dad. You’ve got to hang in there.” He had very advanced pancreatic cancer, and the chances of him making it to graduation were exceedingly small, but nobody was dealing with this.
During the hospitalization, I went to the patient and his wife and I said, “We’re all hoping that you’re going to make it until the graduation but in the event you don’t, would you like to write a letter to your son?” In the Jewish tradition, it is called an ethical will. It’s the idea of legacy work. Just like you would make a will for your material possessions, an ethical will expresses what you value, what you hope for and dream for your beloved. He wanted to do it. His wife said, “Absolutely not, that’s like believing you’re not going to make it.” He was a very gentle guy. He would generally completely defer to his wife, but this time he said, “No, I want to do this.”
So I met with the patient and asked questions like, “What are the things you would hope to be remembered for? What are you most proud of that you want your son to know? What would you want your son to know if he became a father?”
I had him just talk, while I took notes. Later on, I wrote it up on official stationery and gave it to the patient.
What was his reaction when you gave the letter to him?
He started to cry. He said it was perfect. I usually read it to them so they can make edits if they want to. It sort of brings the grief forward when you imagine talking to a beloved that you’re leaving behind.
A few days later the patient died in the hospital surrounded by family members.
His wife, who had advocated so strongly against the letter, hugged me. She said, “That letter is the most important thing that happened here in the hospital.” I was shocked she said that, I had no idea he even shared it with her.
If people have the opportunity to share what’s important to them, particularly generationally, it could address a very deep need to be remembered.
Reflecting on it, I actually see myself as a healer and all my work is in healing, whether it’s working with physicians or working with patients or working with students or working with people in my private practice. It’s a theme that runs through everything. It’s not a word we hear often enough in medicine.
The culture of medicine has lost its roots, in that sense. I hear a lot of people say, “There’s nothing we can do medically, so we’re just supporting them through this.” Supporting people through the experience is often seen as less valuable, but I think, particularly for serious, terminal illness, supporting people is not optional.
Switching gears a bit, tell us about the skill-building and resilience work you’ve done.
I think if you don’t proactively care for the rest of your life then your work life takes over. Although it’s pronounced in medicine, it’s in all fields. The pace and stress of our contemporary culture can be contrary to well-being in general.
When I first came to UCSF, I saw a culture of silence around stress, anxiety, and burnout. I started reading about burnout and the numbers of people who qualified to be burnt out at any given time, which may be at least 50% and trending upward. It just seemed to me that in any other profession if half the workforce was impaired, somebody would be doing something. I’ve really become passionate about this in the last couple of years.
So I developed a burnout prevention and resilience skills training class for providers. We work on mindfulness, social connection and support, positive psychology emotions like gratitude, appreciation, self-compassion, and humor, and delve into the sources of meaning in our work.
Based on your work, what would you say are the key stressors in medicine, generally?
Well there’s research on the electronic medical record and the increasing focus on metrics and “value-driven medicine,” which can lead to reduced connection with patients. I hope that what I’m doing makes some difference, but fundamentally, I believe there needs to be a real commitment on the part of the health system, to understand and make the changes that need to happen.
What is the fundamental problem? How do you define that?
Well I don’t think anybody knows. I think that’s what we’re saying. How can it be that so many people aren’t happy in such privileged work? It’s not clinical. It’s the system. It’s yet another flow sheet that you have to fill out; the actual amount of time spent with patients is low. No wonder we get burned out. We’re just doing orders all the time and answering phone calls.
It’s the loss of interconnectedness.
Yes, it’s the loss of connection. That goes back to even why chaplains may not be recognized as adding value. You can’t put a metric on connection. You can’t say, “I made 5 connections.”
Anything else you would like to share?
I don’t know how you feel about it, but I feel so grateful to have the opportunity to be in people’s lives in the intimate way we get to be and I, especially, get to be in a way sometimes even more than doctors. You get to be there, and you may even want to talk about the things that we were mentioning, but they’re asking you about their creatinine and their platelets and their urinary incontinence, so that’s what you’re having to talk about. I don’t have to do that, so I feel like I get the best seat in the house that way.
I think the seriously ill have so much to share and often are wise, particularly the young ones, from having dealt with illness. I’m really interested in that idea of wisdom and how you develop wisdom. Traditionally wisdom is associated with being an elder and having lived a long time and having a lot of experience. I think our work gives us that opportunity. We don’t have to necessarily live through everything to develop that kind of wisdom, but just to be with people who are living through these things.
So here I am, almost 70. I’m working harder than I’ve ever worked in my life. My partner is retired. She’s like, “Come on, let’s play.” She rides bikes, takes the dog out, cooks, reads. But I just can’t stop. I think it’s because I feel like, what else would I want to be doing with my time? I think that’s an amazing thing to be given that gift that I learn from my patients all the time and learn about what’s important. Obviously people are different, but it all boils down to relationships in the end.
That’s the promise of medicine, and I think that’s the great sadness of what’s going on with the epidemic of burnout. People lose connection to that.
There is some element to being present in these hard and difficult times that can bring perspective to life; and to know the sadness, in some ways
…is to know the joy.