Cornell Physician Brings Palliative Service to Uganda, Brings Home Lessons Learned

Limited access to palliative care is a global problem. Only about 10% of individuals in need of palliative care actually receive it worldwide, according to the World Health Organization (WHO). The organization expects the need for palliative care to double by 2060.

U.S. Physician Randi Diamond, M.D., travels to St. Francis Naggalama Hospital in Uganda several times annually to help foster better understanding of palliative care while also providing direct clinical services. In Uganda, Diamond and her colleagues strive to provide the highest quality care despite lacking many of the resources and technology that are common in the United States.

Diamond is assistant professor of clinical medicine in geriatrics and palliative care at Weill Cornell Medicine of Cornell University and New York Presbyterian Hospital (NYPH), as well as an active clinician. She is also the director of the Liz Claiborne Center for Humanism in Medicine, a member of the NYPH ethics committee. Diamond is a member of the American Academy of Hospice and Palliative Medicine (AAHPM)

Diamond sat down with Hospice News to discuss her experiences providing palliative care in Uganda and how that informs her perspective on care in the United States.

What brought you to Uganda?

I had been thinking about doing some volunteer work, and at some point I had visited Uganda as a tourist. Later, I was at a conference at Weill Cornell that brought together palliative care leaders in the [New York] metropolitan area, and I met someone who had recently returned from working with the African Palliative Care Association (APCA). He connected me with the executive director of APCA, who told me about a small rural hospital that was looking to start a palliative care program

So I packed up, sight unseen. I jumped at that opportunity, to be honest, not knowing what I was getting into. That was in 2013. I can say now, looking back, it’s changed my life.

How has it changed your life?

It really has opened my eyes to the whole world of global palliative care. Going to Uganda, working with the team there, and doing that kind of work, makes me a better doctor. It makes me a better doctor, and it makes me a better teacher.

What was the current state of hospice and palliative care in Uganda at the time when you first arrived? What were some of the barriers or issues that needed to be addressed?

In a way, Uganda is almost like a model for global health care. There are multiple advocacy organizations, the APCA home office is based in Kampala, in part because there are existing support structures for palliative care in Uganda.

There are other organizations like PCAU, which is the Palliative Care Association of Uganda. There are educational programs for health workers, run by Hospice Africa Uganda and Makerere University that are not only from Uganda, but for the entire continent.

Also, there’s government policy that acknowledges the importance of palliative care, and morphine is available. They were the first country in Africa to actually enact a law that enabled trained nurses to be able to prescribe oral morphine.

That being said, as soon as you get further out from the capital city, it becomes a lot more difficult for people to access palliative care or hospice care. When I first arrived at St. Francis Naggalama Hospital, there was not a single drop of morphine on the property. There was hesitancy to use morphine, with a lot of belief in the same kind of myths that we encounter here [in the United States].

The team there, which at the time that I arrived, it had been five weeks since they started their program. We were seeing something like 14 patients across the age spectrum from children to the elderly. They were mostly very poor people with very limited access to any kind of health care. We went out into the rural villages, and we visited patients at home. There’s some activity within the hospital as well, but a lot of it is home- and village-based.

Can you further describe the work you were doing there?

I went with the idea that I am bringing with me my expertise in palliative care. It didn’t take me long to realize that I had much more to learn than I had to teach in the global setting.

I worked with the outreach team, which is run by a nurse who is trained in palliative care. It’s a team of nurses, one of whom is also trained as a spiritual leader. We provide clinical care, but the other thing that we do is education.

To a degree, we did some formal education with village health workers, with patients and families who were in the hospital. Every patient there needs an attendant to stay with them in the hospital. So the palliative care team often will do just broad educational outreach to attendants that are there in the hospital, which is one way they hear about potential patients, maybe back in that person’s village that needs palliative care.

In palliative care, even in [the United States], we’re not just clinicians; we are educators. It’s a major part of what we do every single day. There’s a lot of misunderstanding about what palliative care is, what hospice care is. So I feel like I educate my patients, family members and my colleagues all the time. Education is a big part of what I do, and certainly when I’m back here [from Uganda], I get to share my experiences with my colleagues at AAHPM. I get to share what I’ve learned from this work with my students, with trainees, all the time.

Can you talk about some of the sensitivities, or potential pitfalls that you encountered while you were pursuing this work?

Anytime you’re working in another culture, there are sensitivities that you need to be aware of. As I said, I had more to learn than to teach. I often talk about the challenges for someone who’s doing this kind of work from the United States going to someplace like Uganda, where it’s an under-resourced setting. There’s a lot greater reliance on good history taking, and physical exam skills, when you don’t have the technology to confirm diagnoses.

Then there’s the issue of needing to understand the difference in language and I don’t only mean literally translating language, but the way we talk about things and different explanatory models for illness and for symptoms. This is something that, when we’re doing global health work, we have so much to learn about how to do that in a sensitive way — and in a humble way.

I think another challenge of doing this kind of work is dealing with uncertainty. Not only in terms of diagnosis, but for patients and the difficult choices that they may be faced with that we’re not used to seeing quite as much in this country.

Navigating cultural norms is another challenge, especially since such a big part of what we do in palliative care is around communication. Decades ago in this country, we didn’t talk about terminal illness either, and we didn’t talk about death. Clearly, we’ve shifted in our national discussion of those sorts of things. It’s not quite as comfortable for people to talk about these things in Uganda. There’s this kind of dance around finding out just what people really do want to know, and this expectation that in our culture we don’t talk about these things.

But just like I tell my students here, we always have to be mindful of the fact that just because there might be a cultural norm, it doesn’t mean that the individual person has those same beliefs. So we work with the team to help them to be open to exploring on an individual level, despite the fact that it might be culturally not the norm.

When people hear that I do global health work, a lot of times what they envision is a mission trip in the midst of an emergency. That is not at all the kind of work that I’m doing. I really have partnered with a team on the ground there for ongoing palliative care work.

What does your experience in Uganda tell you about the way we approach hospice and palliative care in the United States?

I alluded before to the idea that maybe people aren’t yet as open to talking about serious and terminal illness and death and dying. But in some ways, I feel like there’s something of a greater acceptance of the idea of palliative and hospice care as being part of universal health care. I sometimes wonder whether it’s because the growth of palliative care in Uganda came out of the HIV crisis, and that has evolved into a chronic illness. So the perception that people have about palliative care is not just for the process of dying, it’s for patients who are chronically ill, which I think is something that we struggle with here.

Over the years, I’ve also recognized that what palliative care is here, is sometimes different from what it is in Uganda. I think it’s broader there, because there’s no social safety net.  A lot of times, we need to look at what people are suffering from in a broader context. Palliative care intervention may include connecting a person with something to nourish them in addition to something to treat their symptoms. 

My work in Uganda is very much a representation of the mission and vision of the AAHPM, to advance hospice and palliative medicine through education, cultivating interest and knowledge, and to try to expand the reach of  those services. One of the things that I and the team I work with highly respect is to connect with other palliative care and hospice providers and organizations. 

On a recent trip to Uganda, someone pulled out a list of palliative care providers in different regions of the country. So if a patient was traveling far, they were now aware of where they could refer someone. That sort of connection and dissemination of education and knowledge is what the AAHPM does.