The Association for Death Education and Counselling presented its Research Recognition Award to Dr. Stephen Connor, PhD. Dr. Connor, current Executive Director of the Worldwide Hospice Palliative Care Alliance, has authored the definitive textbook Hospice and Palliative Care: The essential guide, and published more than 125 peer-reviewed journal articles, reviews, and book chapters on issues related to palliative care and their families. ‘I’m a peculiar sort of person,’ he says. ‘I’ve avoided academia, and worked instead with global bodies.’
Dr. Stephen Connor with members of the local 'Iddir,' a traditional burial society in Addis Ababa, Ethiopia.
Q: What drew you to palliative care?
A: An epiphany moment came during a lecture that I attended in 1974 by Harvard Professor Richard Alpert (now known as Ram Dass) on death and dying. He was basically asking, ‘Why do we “Westerners” have so much trouble dealing with death in our culture, as part of the normal fabric of life?’ He showed pictures of monks meditating in front of corpses in the fields, and California highway patrol officers standing over the bodies of accident victims.
I was very interested in Eastern religion from a spiritual perspective; I thought that I should spend my time on Earth linking spirituality with what I do every day, and decided that helping cancer patients would be a better than what I was doing then, which was treating heroin addicts. A lot of the people I saw were in treatment to avoid jail time; they didn’t want to stop using. Cancer patients had so much real need; there was so much real suffering. The fact that they were facing death made the change of vocation more urgent, more compelling.
Q: Have your views about end-of-life care changed significantly over the years?
A: Yes. We put a lot of emphasis on end-of-life care in the beginning; in the 1970s, cancer treatments weren’t very effective. As treatments have evolved, palliative care has also evolved to become much more about how people live with serious advanced illness. The numbers have shifted. Hospice admissions in the United States then were 95% cancer-related; it’s now 35%. That’s not happening in most of the world, where cancer is still the most pressing need.
In the 70s, hospice care was a rebellious movement about taking back death from the mainstream health care system. But we’ve learned that you will never be successful at reaching people who need care unless you mainstream palliative care.
Q: You have been closely involved with the development of hospice care in the United States. How does the current situation in resource-limited countries mirror that of, or differ than, the U.S. experience?
We use the triangle as our graphic to describe the needs: policy, education, and availability of medicines. Within each of those is a detailed list, such as, the types of policy needed; a model list of essential medicines; education at three levels [training of caregivers, educating the public, government awareness]. Financing and implementation is the bottom line. There has to have an economic engine to finance palliative care.
One of the arguments we tell to government representatives in low and middle-income countries (LMICs) is this: It’s not about more money, it’s about how you spend the money you have. Rearrange a little bit. The problem in health care is that 80% of the dollars go into acute care treatment, but 80% of the people need chronic care. We’re looking at interesting ways to reverse those numbers. What’s needed to bring palliative care to LMICs? Community involvement and governmental financial support.
Sometimes we can repurpose people. Albania had a 50% utilization rate in its regional hospitals, but they were staffed for 100% occupancy. Getting some staff out to see patients wouldn’t cost more, and it would be much more effective. That is not the case everywhere; some hospitals are three to a bed. But the value that palliative care workers bring to the system is a reduction of unnecessary hospitalizations. People will leave sooner and are less likely to need to return.
We’re lacking evidence about the impact of palliative care in LMICs, but think it has a role to play in poverty alleviation. In India there are cases of people selling their homes to send their mother to Bombay in hopes of curing her cancer, then the mother dies shortly after. In the U.S., 62% of all bankruptcies are due to medical bills.
The model is to have thousands of volunteers trained in palliative care, backed by nurses and physicians, taking care of people in their own neighborhoods.
Q: As a clinical psychologist, what do you see as palliative care patients’ primary needs?
A: We always have said that it’s the family that needs more support; we spend more time with them than the patients. In a study I did of about 350 widows and widowers, I asked if their partner’s death was sudden or unexpected. About 50% said it was, but half of those described circumstances that were anything but unexpected.
We were surprised, as we had spent a lot of time describing to them what to expect; for some people, it’s never enough. But we know that the more you give people control over the situation by letting them know what to expect, and what to do about it, the better people do in coping and in bereavement. My research shows that the more people were involved in hands-on caregiving, the fewer complications they had in bereavement.
Q: What research questions need answering in order to better equip those seeking to enact palliative care in resource-limited countries?
A: At the WHPCA, a large part of what we’re doing is trying to come up with new models based on what local people are doing, then being systematic in measuring what happens — what works and what doesn’t.
We developed a strategy; the goal is to have a project in one country in every WHO region. We’re working now in Bangladesh, Jordan, the Philippines, Zimbabwe, Greece. There’s a concept for a project in Panama to look at embedding palliative care in its very good primary care system. In Ethiopia, our partner is working with Iddirs, centuries-old burial societies funded by all residents, based on their ability to pay. Iddirs paid for funerals for those who could not afford them. Now it’s become more of an organization for people whose relatives are very sick and need emotional support. We asked if they would like us to work with them, providing palliative care training. They said, ‘This is exactly what we need.’
One problem is that a number of organizations that funded palliative care no longer exist or are spending less. But there are some new funders.
Q: What are compelling arguments to convince governments of resource-limited countries to divert money to palliative care?
A: It’s time to changing the singular focus on acute care. Resources are poured into treating HIV, TB, and malaria, while the latest statistics show that 70% of mortality is from non-communicable disease. The real health problems are around aging: dementia, organ failure, cardiovascular disease.
It’s a concern that we have been sharing widely. There is a focus on prevention and control, but not as much attention on palliation and suffering. The amount of global serious health-related suffering [revealed by the 2017 Lancet Commission report on palliative care and pain relief] is a way for people to understand the need for palliative care.
Q: Does the ADEC award have an impact on your work as Executive Director of the WHPCA?
A: The WHPCA is not a research organization; its purpose is advocacy. The 2014 Global Atlas of Palliative Care at the End of Life, our signature piece of work, is both a baseline measuring palliative care worldwide and an advocacy tool. It showed that 42% of countries didn’t have palliative care delivery. We’re currently working on the next edition, looking at big questions: How many people need palliative care? What capacity do countries have to deliver it? We want an estimate of the health workforce needs in each country — the number of physicians, nurses, social workers, volunteers, caregivers — and how many are providing palliative care. What is the gap?
We’re aiming for publication next May.
Q: What do you see in the new generation?
I’m seeing a lot of interest among young people, which is heartening. When anyone coming up in the field asks for help, I do it. I hear from a lot of people interested in global palliative care — physicians and nurses, but not so many mental health professionals, unfortunately.
I’m on the scientific advisory board for the National Palliative Care Research Center. We fund a lot of upcoming researchers; I’m seeing a whole generation of young researchers devoted to pc. But we could always use more!
It’s heartening to see the new generation stepping up. They may not do it the way we did but they have the same vision and passion we did, and God knows I won’t see the finish line of everyone needing palliative care getting it before I die; so we have to pass the torch.
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