During 12-16 Jan.09 I had an opportunity to attend the WHO- Ford Foundation Global Consultation on 'Decent Care Values in Palliative Care Services' in Tunis, Tunisia. The experience was very interesting so I would like to share it with you.
I assume many friends in this virtual community are new to palliative care and decent care, just like me :-) So please allow me to start with the following excerpt from the consultation’s concept paper:
“The notions of "decency" and "care" give life to the provision of ethical prevention, effective treatment and care services and collaborative support. Decent care also posits an approach to health services which is holistic (meaning comprehensive), inclusive and responsive to the community and which enrolls the community in the problem-solving and support for care.
Decent care reconciles the particular and the universal; the individual and the community; the haves and have-nots, such as health care professionals and those in their care. Decent care is based on the needs of real people, not on the needs of governments, agencies or systems.
Individuals treated decently experience their own agency, rather than empowerment (being given power by someone else). The concept of agency recognizes personal, moral, spiritual and physical authority and power which is not derived from others but is personal, authentic, informed by culture and tradition, and grounded in community. A person may seek out prevention, treatment and support services but should have a say in how such services are to be offered as well as which services are necessary. This is not only how we should care for those who are sick, but for those who are not; but also those who are at risk for infection or affliction by diseases such as cancer, HIV/AIDS, tuberculosis or hepatitis. …
For those charged with developing health systems and providing health services, decent care implies a re-examination of assumptions – about what care is and how it should be practiced. Of key importance is that the people have to become full partners in designing and implementing their own care – and that professional and informal caregivers accept them in this role. This is the underlying premise of decent care.
Consistent with the WHO Palliative Care Guidelines, decent care facilitates a dialogue between those in care, the community and those organizations and agencies that provide prevention, care and support services. Decent care implies both (a) that the early diagnosis, prevention, care and support services designed, implemented, and provided by public health organizations and health services providers meet specific standards (i.e., “decency”); and (b) that the recipients of these services recognize the high standard (i.e., “decency”) of the services they are provided. In other words, decent care is both provider-oriented and recipient-oriented and respects the dignity of all persons in the health system. The values of agency and dignity are relevant regardless of the cultural context. Interdependence and solidarity focus on the relationship of individuals to their social context and the larger community of care to them. Sustainability and subsidiarity emphasize the need to consider the implications and needed considerations for long-term development of access to health and well-being for the world community.“
The consultation brought together some 70 people –including people living with HIV/AIDS, NGOs, national health programme managers, international organizations, academics, medical/health professionals, care providers, activists-- from all regions of the world, for 5 days of intense listening, deep reflection, active sharing of personal experiences and stories, discussion, and learning.
Most of the participants (me included of course) did find some of the terms used for the 6 core values of decent care difficult to understand: dignity, agency, interdependence, solidarity, subsidiarity, and sustainability. But Olivia from the UK. advised: “Look at the underlying principles, not the words!” so we spent the week trying to go beyond the words and sharing stories and experiences to help each other explore and understand the concepts/principles. This certainly reminded me of the many times people had complained about difficult terms used in the AIDS Competence process and the self-assessment tool in the early days of learning about the approach :-)
What I really like about this learning event and its resonance with our approach is its focus on and appreciation of personal stories and experiences, time for individual reflection, interaction in small regional groups, and sharing/ learning with other groups in the plenary. A nice balance, and an effective cycle. Personally I found the shared stories as much inspiring as they were humbling. While some stories were heart-warming and some told of so much pain that they were heart-breaking, they all were testimonies of human vulnerability and human capacity for response at the same time. And they all confirmed that, regardless of what we are -- a person living with HIV/AIDS, a preacher, or a care provider – deep down inside, we are all human. Nothing more, nothing less.
I’m sorry the stories were too rich for me to share here, and hope that the documentors managed to record them in full so that they can be shared in the future. However, I would like to share some quotes of what I heard during those few days that really struck me:
“You cannot ask for what you do not know” (Winnie, originally from Uganda, now working in the UK)
“When you’re in control, you’re not listening, you’re not hearing..” (Claire, USA.)
“Many of our patients are far better human beings than we are … We have to see not what is wrong or what is bad, but what is good and what is possible ” (Reena, India)
“Being HIV-positive made me a better healthcare worker, because it makes me understand what the patient is going through” (Suzanne, Australia)
“Talking about HIV is my baby. I don’t want my baby to grow up alone… I want it to have aunts, uncles, etc. .. It’s up to you to help the baby grow.” (Rita, Lebanon)
“If you want to walk quickly, walk alone. But if you want to walk far, walk with a friend” (the AMRO group)
“It’s important not only to have the voice, but also the level of voice that will allow you to be heard by the authorities..” (the EMRO group)
“In my country we have 1 doctor for every 10 people. But we still can’t access medicine and treatment as expected, as normal people. We people living with HIV/AIDS in the Middle East, we need to be respected as human beings. We need to have normal life, to have jobs, to have family, to live in peace, to be healthy” (Hassan, Lebanon)
“We people living with HIV/AIDS feel respected and valued in this conference… We appreciate the telling of stories that resonate with us, including stories from service providers that are not about medical procedures, but personal testimonies..” (the PHA Affinity group)
“These 6 core values are not only about decency in healthcare. They are about decency for us as human beings” (Jim, USA.)
The consultation did not end with concrete follow-up action to promote decent care core values, but I think we all came away deeply touched by the powerful stories we had heard. Marie from Cameroon said: “If it is in your heart, you’ll find ways to do it”. I suppose she’s right and that’s why I would like to share this experience with you all in this space. I feel that the decent care core values resonate very well with our AIDS Competence approach. I will also share this blog with participants of the consultation. Hopefully some members of the two groups will cross the borders to connect with each other, as humans.
Please let me know if any of you are interested in reading the full 10-page concept paper. Will be happy to share a copy with you.
Best regards to all,