By Professor Arthur G. Lipman (USA)
Palliative care and pain management professionals have traditionally communicated and collaborated regularly. Indeed, many of us began in one or the other of these types of practices and remain involved in both. But as pain medicine and palliative care have become separate, recognized as specialties for physicians and nurses in a number of countries, important collaborations have been placed at risk.
I just returned from the Annual Meeting of the Israel Pain Association (IPA), a chapter of the International Association for the Study of Pain (IASP). Less than a decade ago the Israeli palliative care and pain management communities were one and the same. Neither was a recognized medical specialty, and the IPA was a home to physicians, nurses and other professionals from both types of practices and research foci. Now both are recognized medical specialties and the Israeli Association for Palliative Care meets separately from the IPA. While several active national pain management societies (IASP chapters) still explicitly include palliative care within their focus, that number is declining. The European Association of IASP Chapters (EFIC) meets separately from EAPC, the European Association for Palliative Care; and in the United States, multiple pain societies meet separately as do multiple palliative care associations. The net result is reduced collaboration and communication.
This is an increasing trend and attempts to reverse it would be futile. Recognizing the potential impact of such specialization on intra- and inter-professional collaboration, pain management and palliative care associations should build relationships to help their respective members understand that by becoming narrowly specialized we might lose the broader perspective from which our patients would benefit.
When I began in palliative care at Yale University and St. Christopher’s Hospice in the 1970s, we served exclusively cancer patients. Today over half of American hospice care patients have diseases other than cancer. As a result, the skill base for hospice providers in the United States is broader, not narrower, than it was in the early years of organized palliative care.
Today, over half of cancer patients in the United States are cured of their disease, but a disturbingly high percentage of those “cured” patients experiences chronic pain from the sequelae of their disease or from surgical, radiological, or pharmacological treatment. Should these patients be seen in palliative care or chronic pain programs? The borders between these two practice types are becoming less distinct.
We must avoid “hyper-specialization”. Good palliative care requires knowledge of contemporary pain management techniques and vice versa. We often describe pain as a bio-psycho-social construct. That description applies equally to palliative care. Our journal reading should not become so focused that we miss important new information from disciplines other than hospice and palliative care. Meetings we attend and persons we seek out as colleagues should complement - not simply duplicate – one’s practice and research.
Thought leaders in every field should be outward - looking. For IAHPC, that might mean more formal liaison with IASP. For EAPC that might call for formal communication and liaison with EFIC. For the American Academy of Hospice and Palliative Medicine and the Hospice and Palliative Nurses Association that might mean establishing more formalized ties with the American Pain Society and other national pain management associations.
Specialization is valuable; it favors progress in focused fields. But overspecialization which produces isolation from related disciplines can be limiting and counterproductive.
Arthur G. Lipman, PharmD, FASHP is University Professor, Department of Pharmacotherapy, College of Pharmacy, Adjunct Professor, Department of Anesthesiology, School of Medicine, Director of Clinical Pharmacology, Pain Management Center, University Health Care, University of Utah Health Sciences Center, Salt Lake City, Utah. He is also editor of the Journal of Pain & Palliative Care Pharmacotherapy
Dr. Lipman is also a Member of the IAHPC Board since January 2012. His bio may be found here.
By Lukas Radbruch, MD (Germany)
An old African saying is: "If you think that you are too small to make a difference, then you have never been in bed with a mosquito!” Taking this to the political level of palliative care development, do we think that we can make a difference in the global provision of palliative care? I think the answer is clear-- Yes we can!
We just have to try. And this is how we want to do it -- The International Association for Hospice and Palliative Care (IAHPC) together with the European Association for Palliative Care (EAPC), Worldwide Palliative Care Alliance (WPCA) and Human Rights Watch (HRW) have launched a new initiative to advocate access to palliative care as a human right. Last month we launched the Prague Charter urging governments to relieve suffering and ensure the human right to palliative care.
In many countries palliative care is not available to everyone or access to it is very limited. This causes millions of severely ill or dying people to suffer from pain and other preventable or treatable symptoms. This is true not only for patients with cancer but also for those with advanced heart, lung or kidney diseases, and progressive neurological diseases or for those suffering from treatment resistant infectious diseases such as HIV /AIDS or tuberculosis. Palliative care also offers improved quality of life even for people in late stage dementia.
Until now, the petition has been signed by 2660 persons. Please support and sign the Prague Charter “Palliative Care: a human right". Your signature will help support the initiative to recognize palliative care as a human right and improve access to palliative care worldwide.
The full text of the declaration can be found on the EAPC Prague Charter website.
Signing a petition is one thing, but we know what this is really about -- the distress and suffering of severely ill and dying patients, who are not able to access good palliative care. If we want to touch people's hearts we have to communicate on the most personal level by telling their true stories. For this we need authors who would be willing to write such a story. We are going to publish these stories on the EAPC Prague Charter homepage.
The aim of the stories is to show why there is a need for a human right for good palliative care, either by describing a worst case scenario that you have experienced or by describing a bad situation that was made better by palliative care.
We will collect stories from all over the world, as we want to demonstrate that the EAPC Prague Charter is not just some theoretical exercise concerning unknown people in far away countries, but that this is about ourselves and our families.
We urgently need these stories, not only the stories of palliative care successes, but also the failures and miseries that were not relieved because palliative care was not available at the time and the place where it was needed.
So if you, one of your colleagues, or one of your patients or a family member wants to share a story, please send it to [email protected] .
We will keep you informed about the progress and the results of the Prague Charter, which will also be a major focus point in the next World Congress of the European Assocation for Palliative Care in Prague in May 2013, which focusses on "Palliative care – the right way forward".
Lukas Radbruch, MD, incoming Chair of the IAHPC and Chair of the Scientific Committee for the 13th World Congress of the EAPC in Prague, 30th May – 2nd June 2013
Dr. Radbruch is the IAHPC Chair-elect and a Member of the IAHPC Board since January 2011. His bio may be found here.
The palliative care community has lost one of its pioneers. He was a person that vigorously promoted the development of palliative care in Latin America. He introduced palliative care in Brazil, he organized courses throughout his life and loved to teach students. He was professor of thanatology and palliative care at Itajubá University, Brazil. He died at the age of 88 on February 20, 2013.
He joined the Board of Directors of the International Association for Hospice and Palliative Care (IAHPC) many years ago and was an active board member and contributor to this newsletter during his time of service.
Dr. Roberto Wenk, Chair of IAHPC stated, “I had the opportunity to share with MarcoTullio feelings and ideas about this new medical field, and to work with him.
Although my memories are from many years ago I am quite sure that he was the first one in the región (sorry if I miss someone) that introduced palliative care in undergraduate medical education. I remember the courses he delivered in Sao Pablo to medical and nurse students ... he was a step ahead of many of us ... but what I remember most from him is how enthusiastic he was about IAHPC ... he never missed an opportunity to raise up the value of our association. Many thanks Tullio.”
Marco Tullio and his wife, Professor Grace Mota Figueiredo, translated into Portuguese the book The Platform Ticket written by Derek Doyle. Dr. Doyle, former Chair and now a Lifetime Member of the Board of IAHPC had this to say, “I too remember him well and especially his enthusiasm for producing a Portuguese translation of The Platform Ticket and then urging all his students to read it. He was a true pioneer, going where few others had ever ventured and never losing sight of the core needs of our patients and the integral features of palliative care. His students, his peers and his colleagues in IAHPC owe him an enormous debt.”
Dr. William Farr, newsletter Editor and Lifetime Member of the IAHPC Board, said, “I shared many emails with Marco Tullio over the years and remember him fondly. He was an active participant in our Board deliberations and was always eager to contribute to our newsletter about the things that were occurring in Brazil, he will be deeply missed by the palliative care community. The picture used in this piece is the one which he sent to me years ago to accompany his writing. It shows a young man and I use it here in sincere remembrance of a dear friend.”
Please also read what his Brazilian colleagues in the National Academy of Palliative Care said about their good friend here.
The Board of Directors and the Administration of IAHPC send their sincere condolences to Marco Tullio’s family.
William Farr, Editor.
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