The Indiana-based palliative care provider Center for Hospice Care (CHC) is looking beyond its immediate community and has developed networks that impact palliative care on a global scale.
The organization’s program, Global Partners in Care, collaborates with more than 100 hospice and palliative care organizations around the world to improve access to those services among underserved communities that often lack resources.
Earlier this year, it was awarded the prestigious 2023 Circle of Life Award from the American Hospital Association, which recognizes programs for their efforts in palliative and end-of-life care.
Historic run
Getting the Global Partners in Care program to this level has been quite the journey for CHC.
Global Partners in Care became an affiliate of CHC in 2017, but the program’s roots were planted in 1999. It began as the Foundation for Hospices in sub-Saharan Africa, a not-for-profit based out of New York, following a professional seminar tour of hospices in Zimbabwe and South Africa by U.S. hospice leaders.
These leaders witnessed the impact the HIV/AIDS pandemic had on African hospices and their patients and decided to do something about it.
“There already were hospices on the continent, since the late seventies, but then suddenly there was this immense need for the growth of the service,” Lacey Ahern, program director at Global Partners, told Palliative Care News. “So, these U.S. hospice leaders went on this trip, saw the need and felt like more could be done to help the situation.”
The Foundation for Hospices in Sub-Saharan Africa (later known as FHSSA) was formed to help support Africa’s hospice and palliative care programs by partnering with U.S. providers
In 2004, FHSSA came under the auspices of the National Hospice and Palliative Care Organization (NHPCO), and it successfully facilitated partnerships across many states and countries in sub-Saharan Africa for 10 years.
Under the NHPCO umbrella, the Center for Hospice Care became a partner in the program in 2008, according to Ahern.
“It had been twinned with the Palliative Care Association of Uganda, and quickly became a very successful and engaged partnership,” Ahern said. “In 2013, CHC won the Global Partnership Award presented for a model partnership that others should look at.”
Title transfer
In 2014, based on input from leaders of U.S.-based hospice organizations, NHPCO decided to build on this partnership model and extend the organization’s reach to other regions of the world. With this new direction came a new name – Global Partners in Care.
In 2016, NHPCO began looking for a new home for Global Partners in Care.
“NHPCO changed gears a little bit and decided to focus more locally,” Ahern said. “The CEO of Center for Hospice Care was part of the NHPCO Board, and whatever conversations happened there, it felt like a natural fit. The Center for Hospice Care had this very successful partnership and could perhaps take on the organization and help other partnerships develop. So, in 2017 Global Partners in Care moved from NHPCO and is now affiliated with the Center for Hospice Care.”
Ahern worked in global health at the University of Notre Dame and had been doing palliative care, research and work in Uganda for a number of years before she came to Global Partners in Care in late 2017.
Now five years since CHC adopted the program, it oversees direct twin partnerships in 10 African countries – South Africa, Malawi, Tanzania, Nigeria, Ghana, Uganda, Kenya, Zimbabwe, Ethiopia and the Kingdom of Eastwatini, also known as Swaziland.
“We also have these other collaborations which we are engaged in and building, in a number of other countries on the continent of Africa and beyond,” Ahern said.
Global challenges
Spearheading and growing a global palliative partnership initiative is no easy task, especially with the evolving nature of the hospice and palliative care industries in America.
“This is a challenge for us, because we have a lot of U.S. organizations who express interest in joining our partnership program, but for a variety of reasons, aren’t willing to make that investment or that time commitment,” Ahern said.
The COVID-19 crisis didn’t help either.
“We had an entire expansion plan worked out right before the pandemic. Of course, that sidelined a lot of things for a lot of people. But I think we’re beginning to come out of that to a point where we can strategize again.” Ahern said.
Along with the difficulties with locking down new partners, there’s also a funding challenge, particularly for partners in very low resource settings where money is already stretched and minimal, Ahern stated.
“The landscape for global palliative care funding has changed enormously just in the last five years,” Ahern said. “PEPFAR money, the President’s Plan for AIDS Relief, which was transformative on the continent of Africa for getting treatment to HIV and AIDS patients, also used to have targeted palliative care funding streams. Unfortunately, PEPFAR shifted to treatment only. Well, those of us in palliative care know that half the palliative care patients in many of these countries are still HIV positive and need that support. But that funding stream has gone.”
Other major international funders like the Open Society Institute have also eliminated palliative care, so many global partners can no longer access the funding streams they once did. This has led some of Global Partner’s participants in South Africa to close their doors, according to Ahern
Commitment to care
Funding the Global Partners in Care program itself is something Ahern said they are always working on, but they are fortunate to have the Center for Hospice Care charitable foundation providing support for the program with grants. They also receive outside grants and individual donations through fundraising.
Any organization working in palliative care with a mission to expand access to those services is eligible to work with Global Partners in Care, according to Ahern. There is a vetting process.
“We involve our other international partners to help us understand the workings of these organizations to make sure that they will make a good partner for us,” Ahern said.
Organizations interested in joining Global Partners in Care aren’t required to make any financial commitments, but Ahern said that component naturally comes with membership because a high-income country partner is typically paired with a low-income country partner.
A significant time commitment is also something Global Partners in Care expects. The organization wants to make sure that there’s an organizational commitment with leadership support and board support, Ahern explained.
Ahern said that the approach Global Partners in Care takes when looking to match partners is to court organizations to learn about their expectations, ensure that they have some organizational support and then make introductions.
“Let them get to know each other and say, ‘Yeah, this is great. Let’s do this. Let’s do a deeper partnership.’ That whole process can take months to sort through and match,” Ahern said. “But we know that building that strong foundation helps these organizations enter into a relationship that means something and they are committed to.”
Ahern said they will also bring together U.S. participants to share with each other what they’ve learned from their international partners, or how they’re addressing problems, according to Ahern.
There is no cookie-cutter model for partnerships, Ahern said. It’s really up to the organizations to decide how they want their relationship and engagements to evolve.
Developing education
A key component to Global Partners in Care outreach is education. Ahern said they are involved in a number of programs to foster learning locally and abroad. “There are so many students interested in global health these days,” Ahern said. “So, you take that interest and you say, ‘Hey, how about palliative care? And here’s how you, as a business student, a theology student, a public health student, can engage in this field.”
For the last seven years, the Center for Hospice Care has co-taught an introduction to hospice and palliative care class at the University of Notre Dame. Many of the students are pre-med majors, but the course is open for anyone to take.
The class can then lead to an opportunity for students to intern at the CHC office or aboard with an international partner to work on palliative care research projects.
“As the Center for Hospice Care, we are interested in education. We have lots of education programs in our community, but we broadened it to the global piece,” Ahern said. “We facilitate that relationship, that educational experience. And there’s a positive output for the partner, whether it’s research or just a program report or funding proposal. And students get this invaluable learning experience that is global in nature.”
Along with the class and internships, a global scholarship program is offered in collaboration with the African Palliative Care Association (APCA). It was launched in 2011 for nurses and social workers in Africa to do formal training and palliative care but has now widened to include applicants such as spiritual care providers, music therapists, clinical officers, doctors and more.
Lasting influence
Ahern said she often hears from U.S. organizations who tell her they’ve learned so much from their global partners.
From providing good care on low budgets, to learning how to value the one-on-one personal relationship with patients, to enhancing the morale of staff, Global Partners in Care has had a tremendous impact on its participants, according to Ahern.
“It gives them something to rally around,” Ahern said. “Sometimes we lose sight of how important the work is. It’s true for me on a day-to-day basis. But when I talk with our global partners, I’m just re-energized by the work that we’re doing and I’m reminded that these partnerships do make a difference.”
From the Center for Hospice Care perspective, its own partnership with the Palliative Care Association of Uganda has deeply enriched the staff. Ahern said that exchange visits have been particularly powerful.
“They actually get the opportunity to meet each other face-to-face and to share ideas with each other. I think it has broadened our global perspective,’ Ahern said. “It has really made the staff, individually and as an organizational whole, approach everything they do in hospice care with a much broader, global and just overall informed perspective. I think that’s something that’s really hard to quantify when we talk about the impact of engaging in a global partnership.”
Looking ahead
Global Partners in Care plans to adapt the ways they offer training and other programs.
The organization has plans to continue expanding the internship program and they are working with the African Palliative Care Association (APCA) on growing their scholarships by building in leadership training, continued support supervision for the scholarship awardees and an alumni association so they can support each other.
“We’re hoping that our scholarship program, which in and of itself is actually quite valuable, becomes a larger strategic investment in a country where APCA is working with the national government,” Ahern said.
In the meantime, the partnership program remains the core piece and focus of Global Partners in Care. Their goal is to forge new partnerships beyond sub-Saharan Africa and are currently working on building fresh relationships, including some in Nepal and Moldova.
To grow additional relationships in palliative care, Ahern said they will also look to be more inclusive to organizations that may not have the bandwidth for full partnerships at first.
“We are definitely a very dynamic organization as Global Partners in Care that’s open to learning and changing as we go along,” Ahern emphasized. “So, we’re hoping that we’ll continue to open up, and folks will too, and as we move forward, we’ll be able to build some more of these partnerships.”