Reports from IAHPC Board Members
From Africa
Regional Update – Africa
African Palliative Care Association (APCA)
In 2010 APCA is pushing especially hard for everyone suffering from chronic pain in Africa to have access to opioids. This means working at several levels, from reviewing an individual country’s legal framework to helping develop global clinical guidelines, to promoting training and education in pain assessment and drug prescribing, to creating grass-roots demand for pain control. This has meant working with many different partners, such as the WHO, American pharmaceutical giants, African educators and community volunteers. This multi-faceted approach embodies the theme of our September 2010 conference, Creativity in Practice.
This big-picture focus does not mean APCA is not promoting holistic palliative care on many other fronts. We’ve completed some insightful research into attitudes towards death and dying as part of the PRISMA research project with leading European universities, to help inform and develop the best possible end-of-life care. We’re also keeping our focus on special groups within palliative care, with meetings in Kenya and Uganda on care of elderly people who are often (shamefully) among the most neglected in society. Palliative care could transform life for so many more older people, extending their active lives and helping them contribute their experience and wisdom to their communities far longer than they otherwise might. We’ve also started work on a project to deliver an overview of palliative care need and availability in all African countries via an interactive map on our website.
2010 sees the release of several cornerstone publications, many of which will be officially launched at our conference. Among the most significant is APCA’s African Palliative Care Standards – a truly collaborative piece of work involving leading palliative care players from across the continent. The Standards set the benchmark for all areas of palliative care provision in the African context, from clinical guidelines and research, to psycho-social and children’s care.
Also due for release are two specially-developed pocketbooks written in consultation with African palliative care experts and designed to bring essential information to practitioners’ fingertips in the field. One book is on general palliative care and the other on pain management. Both pay specific attention to children’s palliative care in order to ensure their needs aren’t overlooked. We’re also developing a paediatric Palliative Outcome Scale (POS) plus guidelines for use of APCA’s African POS for adults.
To deepen advocacy skills across the continent, we’re in the final stages of producing an advocacy facts and a key messages toolkit which covers everything from developing a factual argument, to working with government ministries and the media. To further inform advocacy efforts, APCA carried out reviews of palliative care policies in ten African countries, including Angola, the DRC and Mozambique. Results were presented at roundtable country meetings with key palliative care stakeholders; the final reports will be used as powerful advocacy tools for promoting palliative care. We also reached out to North Africa through a two-day workshop for stakeholders to boost palliative care development in the region.
All these initiatives will be showcased and developed at our third conference, in Namibia in September ( www.apca-windhooek2010.com ). We hope to see you there.
Dr. Faith Mwangi-Powell
Executive Director
Dr. Faith Mwangi-Powell is a member of the IAHPC Board of Directors and you may learn more about her at : http://www.hospicecare.com/Bio/mwangi-powell.htm
FromEdinburgh Scotland – The First of Two parts of an essay by Dr. Derek Doyle
So - what’s new ? A Personal View
There cannot be many palliative care workers who have not had the experience of talking to a fellow doctor or nurse and trying to explain what we do in palliative care. We explain what high value we place on patient autonomy, patients’ rights, the skill of listening, our respect for spirituality, our focus on quality rather than quantity of life, and, last, but not least, the needs and rights of relatives. When we have finished, the other person looks unimpressed and asks, “ So – what’s new? You are speaking about something as if it is new, something you and your friends have just discovered, it is what we have all being doing since we came into Medicine (or Nursing)!”
More than twenty two years ago when some of us were negotiating for Palliative Medicine to be granted specialty status in the United Kingdom we had that same experience. Whatever key feature of Palliative Care that we expanded upon, one or more members of the panel of distinguished senior physicians with whom we had to negotiate, would sit back and ask that same question “What’s new? One or more would proclaim, “I sincerely believe I have been doing just that all my life! Aren’t you just re-discovering, recycling age-old principles?”
We had that same experience even after becoming a specialty when setting up the National Council for Palliative Care in London. Eventually we decided that after listing salient features of what we do, what we believe and the principles upon which Palliative Care is based, we should add the words “…in fact, the features of all good clinical care whatever the diagnosis, the prognosis, the place of care.”
Some readers may feel that we should have been bolder when challenged as I have described. “Yes, of course they are the features of all good care but, admit it, many of them are being, or indeed have been, lost or ignored and we intend to bring that to the attention of our colleagues.” I still believe we were right not to do so then for we would have lost many who later joined our ranks or became loyal supporters.
Saying that Palliative Care is no more, no less, than the principles of all good clinical care does not deny or minimize the progress of the last 30 years, does not deny the exciting advances in research, nor lessen our indebtedness to brilliant, far-seeing colleagues. It does, however, place a great burden of responsibility on us. We must not shrink from emphasising the integral features of all good clinical care (as re-stated and constantly demonstrated in Palliative Care) even if we are all disappointed and embarrassed that our professional colleagues are fast losing sight of these principles. Deny it as we might want to, there is abundant evidence that much modern health care is less patient-centred and compassionate than we or our patients would like.
Let me tell you of some recent headline news in the UK media. Pro-euthanasia campaigners are admitting that there would be little reason for euthanasia if all care was as compassionate as modern palliative care? Some politicians are proposing a law to ensure that doctors listen to their patients and try to meet their wishes as well as their needs! (An interesting challenge when the patient is asking for assisted suicide or even euthanasia itself). A newly appointed Secretary for Health has said that he might dispense with “targets” and focus on “better care”, (At least he admits that being obsessively target-driven can adversely affect patient care). A leading nurse has urged that more be done to enable nurses to spend more time at the bedside rather than sitting looking at monitors or completing questionnaires from management! One health authority has said that it will no longer limit the time a community nurse may spend with a dying patient at home “if by so doing the nurse can give that person better care”! (That same authority has in the past disciplined nurses for spending as long with terminally ill people as those seriously ill with non-life-threatening illnesses). A famous medical academic was recently reported as saying that more Palliative Medicine specialists were needed to care for the terminally ill in general hospitals so that people like him could be freed to care for the other patients.
In other words the answer to “What’s new?” is “Nothing !”. Palliative care is a re-affirmation of what has been the bedrock of all good care even before the days of the exciting diagnostic and therapeutic advances of the last 30 or so years. Where we have gone wrong is in thinking that compassionate bedside care and scientific advances are mutually incompatible. In fact one cannot survive without the other.
Please read the IAHPC August issue of this Newsletter for part two of Dr. Doyle’s essay.
Dr. Doyle is a Life Member of the Board of Directors and you may learn more about him at our web address: http://www.hospicecare.com/Bio/d_doyle.htm
From the USA
By Dr. Frank D. Ferris
Training Course in Kiev, Ukraine
“ May you dedicate your hearts and hands to comfort all those who suffer”.
At the conclusion of a recent 2-week training course in Kiev, Ukraine, 40 physicians gathered around the table to first draw their own hands in collage and then have lavender-infused water washed over their hands. This moving celebratory ceremony symbolized their joining together and dedicating their efforts to palliative care service and education as a community. From all corners of the Ukraine, these doctors were specially selected to be trainers of advance palliative care skills and knowledge in varied settings across the country.
After 4 days of classroom teaching based on Education for Physicians on End-of Life Care – Oncology (EPEC-O) and End-of-Life Nursing Education (ELNEC) curricula, plus sessions on education, presentation and facilitation skills, the group coalesced to develop a sense of fun and camaraderie. The group then divided in order to begin bedside activities at four different clinical sites.
In the 6 days that followed, the team dynamics blossomed. Participants met and interviewed patients with complex problems related to AIDS, cancer and the elderly. In collaboration with the managing physician, they developed a comprehensive palliative care plan for each patient. These small case-based groups were rich with tears and laughter as the full humanity of the doctors, patients and families were explored at depth.
The US faculty included Dr. Frank D. Ferris, Course Director, Dr. Shannon Moore, Dr. Susan Bodtke, Ms. Mary Wheeler, an advanced practice nurse, and Ms. Rosene Pirrello, a clinical pharmacist. They taught during the first 2 weeks of a 4-week Train-the-Trainer initiative hosted by the Institute of Gerontology and Institute of Palliative Medicine and Hospice at the P. L. Shupik National Medical Academy of Post-Graduate Education (NMAPO). The International Renaissance Foundation (IRF), Open Society Institute, and The Institute for Palliative Medicine at San Diego Hospice were co-sponsors of the program.
How to relieve distressing symptoms with currently available in-country medications was emphasized, but future-based teaching was also provided. In anticipation that a broader range of medications will one day be available, and that revised prescribing practices will be the norm, scientifically-based pharmacology was reinforced to build the foundation of evolving international palliative medical therapeutics.
Some were initially resistant, “no, we can’t do that here.” However, as the participants saw the effect of the evidence-based prescribing practice, they experienced the patient transformations often seen when highly skilled palliative physicians are empowered to act. In addition to the strict focus on the bio-physical aspects of patient care, there was a holistic embrace of the patients and their concerns. Using courageous questions, the doctors experienced a deeper engagement heart to heart, witnessing the depth of humanity and dignity of these very ill and sometimes abandoned ones.
The finale reflected a tender journey taken together. The response to the invitation to join hearts and hands to create a Palliative Care community across Ukraine, and in unity with others globally, was a resounding “Da!”
Note: Photo consents on file for everyone in the photograph
Dr. Ferris is a member of the IAHPC Board and the Director, International Programs, San Diego Hospice & Palliative Care, a teaching affiliate of the University of California, San Diego, School of Medicine. To read more about Dr. Ferris please visit: http://www.hospicecare.com/Bio/f_ferris.htm |
