Throughout the past twenty years of working in palliative care in the USA and internationally, these two formidable leaders have nurtured strong palliative care champions and helped initiate essential palliative care programmes in some of the most challenging contexts across the globe.
Mary and Kathy spoke to ehospice at the recent OSF seminar in Salzburg, reflecting on their work together and looking ahead to the future of global palliative care.
How did you meet and become a team?
MC: I first met Kathy when I accompanied my mother to a doctor’s visit at the Memorial Sloane Kettering Cancer Canter in 1982.
KF: Mary’s mother had a pain problem for which I was evaluating her. She had many more complicated issues and was admitted to Memorial where she eventually died.
Mary, who had become very interested in medical care and hospital administration issues, agreed to come and work at Memorial, directing our pain service.
How did this translate into work for George Soros?
MC: We had been at Memorial Sloane Kettering for about 16 years, when Kathy was invited to participate in a discussion with Mr Soros on end of life care.
Through a series of meetings, the Project on Death in America was formulated and Mr Soros asked her if she would be the director of the project. I also began working there at that time, with the foundation.
KF: Mary came to Open Society Foundations as the associate director of this project that eventually was named: The Project on Death in America’ and brought all of her extraordinary administrative skill sets to running this philanthropic effort.
The project began with a 15 million dollar budget for three years and eventually became a 45 million dollar project over nine years.
Is there a particular moment or a particular theme that stands out for you during your time working at OSF?
KF: Well I think the extraordinary aspect of that project when we began was that here was a philanthropist who came to us and had an interest in improving the care of the dying, without us advocating for that.
So here Mary was the administrator of our pain service, while I had spent my research life in clinical and clinical life in caring for patients with cancer and pain.
Every day we dealt with seriously ill patients who died, so death and pain relief were very much in the forefront of what we did.
We had worked repeatedly to improve palliative care at a more international level, because at Memorial Sloane Kettering Cancer Center, we were a WHO collaborating centre.
So we had a major interest in this, and now we had a funder who might be interested in supporting us.
We had the opportunity to present to this funder so that he would have an idea of what we would want to do, and he was totally open to that idea.
Mary, do you have a particular moment or something that stands out for you during your time at OSF?
MC: Oh there are really very many moments.
We had a very active and participatory advisory board of whom all were very dedicated people and very enthusiastic about improving the care of the dying in the United States. That is certainly very exciting, to deal with people who are so committed to doing something.
As we were developing the programme, we developed a series of initiatives. One that I was particularly close to was the faculty scholars programme and the social work leadership programme.
We focused on concentrating a lot of time and energy and really a small amount of money roughly speaking to develop individual champions in palliative care. That was a particularly exciting adventure for all of us.
Obviously this meeting has been about bringing together leaders in palliative care internationally and there have been meetings in the past that have done that. I was wondering whether you could speak about the value of that approach for growing palliative care in different countries?
KF: One of the things that we learned in the Project on Death in America was that to be able to build a field, and particularly to build a field of medicine, that you needed to have physician leaders.
So we heavily focussed on physician leaders, we focussed on nursing leaders, we focused on social work leaders. We focussed on individuals who create and provide the services that would demonstrate what palliative care was.
Fast forward into the international effort: We took the aspects that were successful in our experience in the US, and moved these into the international arena, so that we took the model that we had helped develop and promote as a WHO collaborating centre at Memorial, and that model was to use a public health approach.
So in moving forward into the international arena, we focussed very much on the WHO public health approach and on supporting individual kinds of programmes.
We took the wonderful aspect of this kind of progression. The realisation of our work was that many of the faculty scholars that we helped develop and support in the US helped us internationally now, to take what they had learned, to be able to twin with programmes, create leadership programmes, be part of the educational programmes at an international level.
MC: And provide technical assistance, so many of the faculty scholars who worked with the Project on Death in America have now become technical advisors to leaders developing around the world. That’s been particularly exciting to watch them all become engaged internationally.
I think one of the things that is exciting about these kinds of meetings where we’ve brought together the foundation representatives, along with organisational representatives, is that it’s really given an opportunity to network these two groups of leaders who carry the work on and further develop it.
The hope was by bringing organisations such as WHPCA, and IAHPC, the International Children’s Palliative Care Network, to bring these groups together with the foundation leaders so that they could support one another.
This would allow the organisations to help the national foundations and the in-country leaders, but at the same time the foundations and the country leaders can go to these organisations for their needs for resources and educational programmes.
So seeing that exchange has been very exciting.
If you could have one wish for the future of hospice and palliative care, what would that be?
KF: That there’s palliative care for all. That palliative care is fully integrated into the heath care systems of individual countries.
You know, we can never lose focus on the fact that this has to happen at a community level. It has to happen at a very local level. So my wish would be: Palliative care for all at the local level, or in the setting at which they are.
MC: I would say the same thing, knowing that there’s a time in the not too distant future where the quality of life of patients and families living with a life limiting illness has been improved so that the patient lives as fully as possible for as long as possible in a supportive environment, wherever that patient is.
Whether they’re at home or in a free standing hospice or in hospital so that the end of life is not traumatic and can be as peaceful as possible. So we would hope that for all people around the world.
Is there anything else that you would like to add?
KF: I think it’s the level of optimism we have. This is such an important time in the field of palliative care, because we now have a resolution that is more than symbolic language about palliative care. This is assuming governments will take on the obligation to respect the resolution they voted for.
MC: I would also hope that with the WHO resolution, that we will be able to encourage many more donors, many more groups to support palliative care.
Certainly national governments have to be engaged and have to provide costing for palliative care services, but while we’re waiting for that to happen, we need to engage many more philanthropic organisations to fill that gap until that happens.
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