Newsletter editor Alison Ramsey recently sat down for a conversation with Dr. Stephen Connor, Executive Director of the World Hospice Palliative Care Alliance, which organizes WHPCD. He was jetlagged from one of his regular trips to establish, expand, and entrench palliative care in the Eastern European region (this time, it was Armenia). The following is an edited transcript of the conversation.
How has World Hospice and Palliative Care Day evolved?
Dr. Stephen Connor: The first World Day, held in 2005, coincided with a series of global summits of national associations. It has grown two steps forward, one step back—the pandemic caused a slowdown—but we have had as many as 70 countries participate in a single year.
We have a map of people who register an event, but I’m certain that there are many, many events that don’t get registered. We’ve had technical problems with the website, and people get frustrated when they try to register, but can’t. We know that huge numbers have downloaded our WHPCD toolkit.
We were steadily growing, then plateaued, then dropped a bit, but I think that we’ll get back up and grow even more. It’s a heck of a lot of work! It literally goes on all year: one person at the WHPCA spends one-quarter of their time to organize it.
While we specify one day as World Hospice and Palliative Care Day (this year, on October 9), we are happy to hear about people organizing events before and after—whenever it’s convenient for them!
Can you reflect on the impact of WHPCD?
Dr. Connor: It’s all about raising awareness and educating: not just in the palliative care community, but among the public. Efforts by all of us, helped by the Lancet Commission on Palliative Care and Pain Relief, has really helped change how we think about palliative care as it involves those who have health-related suffering and are also facing a shortened lifespan. Children, for instance, can live 20 years with palliative care needs: close to 98% of the 2.5 million of children who die with serious health-related suffering are from developing regions.
Anything we can do to promote palliative care is good for everyone in the field.
We have tremendous support from Dr. Tedros (Director General of the World Health Organization), who has an internal working group of people who we work with on palliative care. They are putting out press releases, and Dr. Tedros is writing to all member states about palliative care, so hopefully we will see an uptick here. Ehospice and the EAPC (European Association for Palliative Care) are promoting WHPCD. We can’t gather for events this year, but we’ve all realized that we can do a lot more virtually than we thought we could.
Palliative care is a topic that people avoid thinking about, due to a basic fear of dying. When you start talking about death, they stop listening. Reframing the language and images we use, talking about a better life rather than the end of life—I think that’s working better for us.
It’s my 45th year working in palliative care. We thought that by now, everyone would be practicing more holistic medicine. We failed at that, but there’s a need for it. Not everyone can do the work; with COVID a lot of health care workers are leaving the field because they can’t deal with all the dying. The drive is to have more primary care physicians delivering palliative care. We believe that two-thirds of people with palliative care needs could be treated by their primary care providers.
It’s been challenging to really measure the impact of WHPCD. But we know that there is untapped potential for it to have more impact.
The WHPCD website focuses on the theme of equity in access, asking to be notified of projects involving specific groups: children and neonates, frail older people, low- and middle-income countries, LGBTQ+ people, and people living in humanitarian crisis, as well as those who are incarcerated, experiencing homelessness, living with disabilities, or have HIV, TB, or COVID-19.
Dr. Connor: Our five-year plan has been to focus on helping to provide value: doing more without costing more. We were going to go with the theme of poverty alleviation, then nursing, because 2020 is the year of the nurse, then the pandemic hit. We came up with the equity idea: “Leave No One Behind: Equity in access to palliative care.” We want to focus on successful efforts to increase equity, not focus on inequity, a negative. We picked 10 groups of people who have a historical lack of care.
We’re trying to help the palliative care community be more effective at reaching these populations. It’s not uncommon for long-term disabilities to limit the life expectancy of people in low-income countries, and for the disabilities to be the reason for palliative care. Equity shines a light on populations that don’t always get access.
Equity a big issue, along with social justice.
I don’t think we’ll ever have an official, globally recognized world day for palliative care, and maybe that’s a good thing. It gives us the freedom to go in the direction we choose.
World Hospice and Palliative Care Day organizers identified children as one of the key groups requiring greater equity in access to palliative care.
The 64th issue of the Pediatric E-Journal, published in August, is titled Disparities and Inequities in Pediatric Palliative/Hospice Care. It is a collection of articles intended “to stimulate discussion on the interdependent and yet distinct topics of disparities and inequities in pediatric palliative and hospice care.” Its editors hope the issue “will provoke fruitful reflection about if or when disparities exist in pediatric palliative and hospice care; if or when those disparities become inequities; and what are the uncertainties in this disparity/inequity discussion.”
The Indian Association of Palliative Care has published a special feature on pediatric palliative care, comprising 10 articles, including topics such as: the current state of children’s palliative care (CPC) in India, how to improve access, examples of CPC programs (i.e., projects in Maharashtra and Goa), how to communicate with a terminally ill child, and perspectives from varied individuals who provide pediatric palliative care (i.e., Broken Crayons Colour Just As Well!, written by an arts-based therapist; A Goodbye that Eventually Wipes the Tears, by a clinical psychologist).
To learn more about Worldwide Hospice Palliative Care Alliance, European Palliative Care Association , or Indian Association of Palliative Care, visit the IAHPC Global Directory of Palliative Care Institutions and Organizations.