International Association for Hospice and Palliative Care 

Subject: IAHPC Newsroom
2005; Volume 6, No 2, February

William Farr, MD
Editor

Liliana De Lima, MHA
Coordinator

Alou Design
Layout and Distribution

Dear Members and Colleagues:

The complete IAHPC Online Newsletter has been uploaded to our website at:
http://www.hospicecare.com/newsletter2005/feb05/index.html

PDA version located here:
http://www.hospicecare.com/newsletter2005/feb05/pda.htm

The Table of Contents:

Message from the Chair and Executive Director
Dr. Kathy Foley and Liliana De Lima

Article of the Month
Dr. Ripamonti

Dr. Doyle receives Lifetime Achievement Award
From American Academy of Hospice and Palliative Medicine

IAHPC Travelling Fellowship report ( St. Petersburg , Russia )
by Dr. John C. Ely

Euthanasia yet again
Dr. Derek Doyle

Regional Report: India
Dr. M.R. Rajagopal

IAHPC Short Story Winners announced

Webmaster’s Corner

Editor’s Notes
Dr. Farr

Regards,

Kathleen Foley, MD Chair
William Farr, PhD, MD Vice-Chair and Editor

Message from the Chair and Executive Director

Dr. Kathy Foley and Liliana De Lima

Dear Readers:

Hello to all. This month we have several announcements:

1. Awards to IAHPC Board Members:

  • We are proud to announce that two of our Board members were recently distinguished with prestigious awards: The American Academy of Hospice and Palliative Medicine (AAHPM) gave the 2005 Lifetime Achievement Award to Derek Doyle and the Hospice and Palliative Nurses Association (HPNA) gave the 2005 Distinguished Service Award to Nessa Coyle. Congratulations to both for receiving these well deserved awards. Dr Doyle's acceptance speech has been uploaded in our website and is included in this newsletter. To read it online, click on http://www.hospicecare.com/announce.htm

2. Donations and gifts to IAHPC:

  •  IAHPC has received a grant from the Open Society Institute (OSI) and an unconditional donation from Grunenthal GmbH in Germany . Thanks to this grant and generous gift, IAHPC has now additional funds available to support individuals and programs in developing countries. To learn how IAHPC can help, go to our website at www.hospicecare.com and click on Resources. You will see a listing of options, including the Traveling Fellowship Program, the Clearing House Program, the Traveling Scholarship Program and the Faculty Development Program. Many thanks to both organizations for their support to the global development of hospice and palliative care.
  • Thanks also goes to Lisa Pelzek Braun for several issues of the Journal of Palliative Medicine, to Pam Bennett from Purdue Pharma for her donation of PAIN and Oncology Nursing Journals and to Pamela Kedeziera, RN from the Pain Management in the Fox Chase Cancer Center in Philadelphia for their donations to the IAHPC Clearing House Program.

3. IAHPC Support to Programs and Individuals in Developing Countries:

  • An IAHPC Traveling Fellowship grant was awarded this month to Dr. Vivek Khemka from New York to support his travel and educational activities at the Sundaram Medical Foundation in Chinnai , India . He will be working with Dr Arjun Rajagopalan and Dr Manjula Krishnaswamy conducting workshops and helping develop a palliative care model for their institutions. During their 4 weeks of stay, they hope to educate and train 80-100 physicians (including residents) in the basic principles of palliative care and provide a locally suitable model for practice in the in-patient and out-patient settings. Dr. Khemka has received permission to use the EPEC curriculum and adapt it to fit the needs and characteristics of India . We wish him a successful trip and believe this will start a palliative care trend in the state of Talminadu.
  • Dr. Msemo Diwani has started as a palliative care professor at the Ocean Road Cancer Institute (ORCI) in Dar es Salaam , Tanzania . The ORCI was awarded a grant under the IAHPC Faculty Development Program and IAHPC is now supporting Dr Diwani's salary. Dr. Diwani is a radiation oncologist trained in palliative care and member of the steering committee of the newly formed Tanzania Palliative Care association. We are excited to be part of this new development and look forward to his role in teaching palliative care to residents and students in the country.

4. IAHPC Awards:

  • As we told you in our past Newsletter, we received many applications to the IAHPC Recognition Awards. Due to the high volume of applications, the selecting committees are still reviewing the applications. We are sorry for the delay but we promise to announce the winners in our next Newsletter.
  • Congratulations to Jenika Graze of Kathmandu , Nepal , our IAHPC Palliative Care Short story winner! You can read this wonderful piece in this issue of the Newsletter. Jenika was able to include in a brief piece the essence of palliative care while at the same time highlight some of the difficulties that our colleagues face in developing countries.

5. IAHPC Participation in Meetings:

  • Last week IAHPC participated in the Annual Meeting of the American Academy of Palliative Medicine and the Annual Assembly of the Palliative Nurses Association, with a stand. Thanks to all those who stopped by our booth and expressed interest in international palliative care. Please remember that there are many ways in which you can support international hospice and palliative care. To learn how you can help, visit   http://www.hospicecare.com/donate/ or the How to Help button on our Home Page.
  • Next month we will be in Korea in the Second Global Summit of National Hospice and Palliative Care Associations , organized by Help the Hospices in the UK , as an effort to bring together representatives of national associations from all countries of the world and develop strategies and networks of support. The seminar will take place before the Annual Meeting of the Asia Pacific Hospice Network (APHN). For additional information about this Summit , please contact Louise Gray of Help the Hospices at [email protected] and for the APHN meeting, visit the congress website at http://www.aphc2005.org

6. New Developments:

  • The old Fact Sheets have now been replaced by a new set of Guidelines called Getting Started: Guidelines and suggestions for those starting a Hospice / Palliative Care Service. Edited by Derek Doyle and in with collaboration from Doctors K.S. Chan ( Hong Kong );
    Daniela Mosoiu ( Romania ) and Alan Nixon ( Canada ), these useful guidelines provide recommendations on how to start and run a hospice or palliative care program. The guidelines are free to all our readers and can be copied, printed and distributed. They are available in our website in the Resources Menu in http://www.hospicecare.com/gs/

7. IAHPC Membership

  • Many of you should have received emails or letters in the mail with your membership dues for 2005. Please renew your membership with IAHPC or consider joining as a member. Membership fees provide an important and valuable source of support to IAHPC and helps us help individuals and programs around the world. Our webmaster has simplified the membership applications, so it is now very easy to join IAHPC. To become a member or renew,visit http://www.hospicecare.com/join.htm. The application is on a secured server, so your information will be safe. If you prefer to send your application via regular mail or fax, the forms can be also downloaded from our website in the same link above.


Until next month,

Kathy Foley, MD
Chair, Board of Directors

Liliana De Lima, MHA
Executive Director

Article of the Month

Dr. Ripamonti

Opioid switching from transdermal fentanyl to oral methadone in patients with cancer pain

Author(s): Benitez-Rosario MA, Feria M, Salinas-Martin A, Martinez-Castillo LP, Martin-Ortega JJ

Abstract:  Cancer 2004; 101: 2866-73

According to the data in literature, opioid switching and/or route switching show a reduction in the prevalence and severity of gastrointestinal (GI) symptoms, pain, drowsiness and/or sedation, delirium or agitated confusion, and myoclonus.

Retrospective and prospective studies show the clinical efficacy of switching from oral or intravenous morphine to oral methadone and that from intravenous hydromorphone or fentanyl to intravenous methadone.

The authors evaluated 17 patients with cancer who switched from transdermal fentanyl to oral methadone (administered every 8 hours) because of uncontrolled pain in 41.1% of the patients despite using > 300 mcg/h of fentanyl, or > 3 escalating doses in 10 days, and secondly because of CNS related side effects due to fentanyl in 58.9% - myoclonus, hallucinations and delirium.

Some notes on the protocol:

The following dose ratios have been used:

  • A.
    • 1. a dose ratio of 1:100 between fentanyl patch and oral morphine;
    • 2. a dose ratio of 5:1 from morphine to methadone;
    • 3. a dose ratio of 10:1 when patients were on high-dose fentanyl
      (400 mcg/h) or received a rapid increase in the dose or had delirium.
  • B.
    • the rescue doses of oral morphine were not calculated in the daily methadone dose
  • C.
    • with respect to the fentanyl withdrawal, methadone was administered after 8-12 hours, 12-16 hours, 16-18 or 18-24 hours according to the previous opioid dose exposure: < 100 mcg/h, 100-200 mcg/h, 200-300 mcg/h or >300 mcg/h respectively
  • D.
    • rescue doses of methadone were administered (10% of the daily dose every 2 hours)
  • E.
    • the dose of methadone was titrated every 72 hours
  • F.
    • adjuvant drugs were continued at the same doses

The authors found that the mean dose ratio between transdermal fentanyl dose and final methadone dose was about 1:17 (range 1:8- 1:33 ). Previously fentanyl dose did not correlate with the final methadone dose.

Among the 17 patients who switched to oral methadone, 6 of them did not require a change in the initial methadone dose, seven patients required one or two dose adjustments, 4 patients had a dose decrease due to drowsiness or sedation. It is interesting to note that these patients had renal impairment and were among those who were administered a dose ratio of 5:1 between morphine and methadone. A significant decrease in pain intensity as well as in the number of rescue doses during methadone therapy were reported. Myoclonus disappeared in all patients within 2 days of fentanyl suspension whereas delirium disappeared in most of patients within 1 week.

No patient suspended methadone due to adverse effects.

Why I chose this article

Intra-individual variability in response to different opioids may be due to:

1. genetic make-up,

2. tolerance to different opioid effects,

3. incomplete cross-tolerance among opioids selective for the same receptor subtype affinity

4. differences in profile of active metabolites.

While opioid rotation has the practical advantage of minimizing polypharmacy, outcomes are variable and somewhat unpredictable. Moreover, familiarity with the use of the opioid dose conversion tables is paramount. This study gives us a preliminary report on an effective and safe modality for switching from fentanyl patch to oral methadone

Regards,

Carla Ripamonti, MD
Member of the Board of Directors, IAHPC

Please visit the following link to read past Articles Of The Month:
http://www.hospicecare.com/AOM/aom_main.htm

Dr. Doyle receives Lifetime Achievement Award from American Academy of Hospice and Palliative Medicine

Dr Derek Doyle’s response on receiving in absentia the 2005 Lifetime Achievement Award of the American Academy of Hospice and Palliative Medicine (AAHPM). This was presented on DVD to the Annual Convention of the AAHPM in New Orleans 20 January 2005 where Liliana De Lima received the award on Dr Doyle’s behalf. 

Hello to you all. Good morning.

Please accept my sincere apologies that I cannot be with you in person. Nothing would have pleased me more than joining you all in New Orleans but I would not dare disobey my cardiologist.

Getting this prestigious award surprised and thrilled me more than I can begin to describe. My immediate reaction was that you had mistaken me for someone else, or that you thought I had done more in life than is actually the case! I remain puzzled why you chose me but nevertheless am delighted. Just working in palliative care is itself such an honour and so rewarding that anything extra is a huge bonus.

Jim Cleary tells me that my leading the editorial team of the Oxford Textbook of Palliative Medicine was one reason for honouring me. In that case I am getting an award for having had a lot of fun, for working with some of the best people in the world, and for getting a chance to learn new things every single day. Editing such a book meant surviving countless computer problems and also working with a great team of copy editors, printers and publishers in South India where the book was produced.

Jim also suggested I say a few words, perhaps distilling just a few of my thoughts after 35 years in palliative medicine. I am delighted to do so. If I bore you don’t hesitate to fall asleep – I won’t be able to see you. I have a few anxieties about the direction in which we are going and about some of the things that are happening. Let me share them with you.

The first is that we are fast becoming experts in the clinical pharmacology of pain and symptom management more than in relationships and ‘total caring’. May I remind you that the first “modern” hospices were formed in the late 1960s largely because of published consumer opinions – the expressed disappointments and disillusionments of patients and relatives about what today we call “ end-of-life care” There is no denying that one recurring theme was poor symptom control. The other was the medical profession’s apparent lack of interest in how patients and carers felt, what they feared and needed to know, how lonely, unwanted and neglected they felt and how insensitive we doctors often were. What the patients craved for was companionship, evidence that even in their dying they were still valued, appreciated, wanted and even ‘useful’ in our materialistic and secularised society. Today I wonder if we are in danger of over-emphasising physical comfort at the expense of the “softer” side of palliative care, the one-to-one relationship with the dying. I suggest to you that palliative medicine should be an exercise in befriending and sharing as much as an exercise in therapeutics or clinical pharmacology.

My second anxiety may sound like a contradiction of what I have just said. There is a very real danger that in a few years’ time palliative care and palliative medicine will be the least “evidence-based” subject in medicine unless vastly more research is done. If that happens we will lose the respect of colleagues in other specialties and the quality of our care will inevitably suffer. We simply have to do more research of the highest possible quality. Doing so will not be a denial of our holistic approach. Science and compassion are not mutually antagonistic, as some seem to think. Objectivity and subjectivity can and do co-exist. In fact in our work they can be synergistic.

I remain anxious that, unthinkingly, we make claims that are not always true. For example, is our approach always interdisciplinary or is it sometimes more an exercise in which palliative medicine doctors delegate tasks and responsibilities to others? Every day we hear of nurses and therapists doing things that were traditionally done by doctors but how often do we hear of doctors taking on some of the roles traditionally done by others? Is all this to enable doctors to do their work better and provide better care, or is it to reduce their workload? We claim that palliative care is always holistic but do most of us have as much training and skill in spirituality as we have in pharmacology? Do we see that aspect of our work as intuitive, something that flows naturally from our own faith and philosophy? If we do, I suggest to you we are deceiving ourselves. How many of us have been trained in the humanities? How many of us feel competent and confident in caring for people from different cultures and creeds? If we look at what is happening in the world around us today the answer must be that none of us has a right to feel either competent or confident with regard to cultures and creeds different from our own.

Lastly – some of you can waken up now – I remain concerned that millions, (yes, millions, not thousands) millions of people have no access whatsoever to palliative care services or even to doctors and nurses who have learnt anything about palliative care. Some of these deprived people are in our own countries in the West because we have done so little to get palliative medicine into the curricula of all our medical schools. (Fewer than 10 countries in the west can claim that palliative care is taught in all their medical schools.) Most of the deprived are in the less affluent, less sophisticated countries – those that we patronisingly call “developing countries.” Why are we not doing more for them? Do we want palliative care to be regarded as one of the luxuries we in the West take for granted – something that you get when you have already had the best that modern medicine, surgery and oncology can offer?

Could it be that most of us don’t even know how desperate is their need – not only can they seldom hope to cure - they often have little modern equipment, few modern drugs and little of the means and the knowledge to alleviate appalling suffering? Why are we not twinning our units with some abroad? Why are we not offering to visit them and share what little we know? Are we frightened that they will see our approach to them as further evidence of interference or liberation by the West?

Believe me, if we do it more prepared to learn than to teach, more ready to share than to patronise, and do so without paternalism– our colleagues abroad will welcome our friendship and the spirit in which we share ourselves with them. It is for that reason I see the International Association for Hospice and Palliative Care as so important. Unless we act now we shall go down in history as yet another example of the West’s self-centered indulgence when, as you and I know so well, access to palliative care is a basic human right, not a luxury.

Let me urge you to keep palliative care simple rather than increasingly sophisticated, never to forget why it started, and, in this age of apathy and cynicism, to remain as excited about it in the days to come as you and I were when we first came into this work.

I often feel we live in a world endangered by four things -apathy, cynicism, materialism and fundamentalism; fundamentalism that might be economic, political or religious. Fundamentalism sees everything in black and white and knows no shades of grey, nothing between right and wrong, them and us. Out of fundamentalism , whatever its basis, spring arrogance, insensitivity, self-righteousness, and inhumanity to our fellow men and women Palliative care is one answer, one response to those dangers facing our society. It focuses on the individual and proclaims to each man and woman in our secularised, materialistic world: “You matter - not because you are dying, not because you are a clinical challenge to us, not because you are a shareholder - but because you are you!” We owe it to the world to share all we know and all we love about palliative care. If we in palliative care and palliative medicine fail to look beyond our shores we shall deservedly die.

Again – thank for your kindness and this great honour you have bestowed on me.

Derek Doyle
(Scotland)

IAHPC Travelling Fellowship report
( St. Petersburg , Russia )

by Dr. John C. Ely

Background:

With the generous support of a traveling fellowship grant from the International Association of Hospice and Palliative Care, I spent two weeks in St. Petersburg , Russia in October 2004 as a faculty member presenting an ongoing Palliative Medicine Curriculum course to Russian physicians and nurses.

This ongoing course is a diploma-level program in Palliative Medicine, with certification of graduates through the Pavlov Medical University in St. Petersburg in cooperation with Anglia University in the UK . The course represents the combined collaborative efforts of these institutions and the UK-based charitable organization St. Petersburg Healthcare Trust.

The dedicated, highly skilled physicians and nurses participating in this course have a keen interest not only in developing and maintaining their state-of-the-art clinical skills, but also in elevating the status of palliative medicine in Russia to that of specialty-level care.

Activities:

A strenuous week-long teaching schedule was maintained presenting a didactic and hands-on symposium entitled “Biomedical Aspects of Advanced Cancer Care” to Russian palliative care physicians and nurses in St. Petersburg . This symposium included modules in symptom management, ethical decision making and language in end-of-life care, procedural workshops, and specialist-level palliative care case studies. In addition, our group of presenters, including myself, Dr. Kelvin Bengston, Ms. Terry Magee, Director of Education, and Ms. Beverly Snowball, MacMillan Nurse (all from St. Helena Hospice in Colchester, Essex, England) spent time at several hospices in St. Petersburg with patients, staff and administrative personnel. This on-site time afforded us many opportunities to compare clinical management approaches with our Russian colleagues, to do hands-on teaching at the bedside, and to discuss strategies, problems, and patient care protocols

Our group, along with a large number of local citizens, had the pleasure of attending a performance of Mozart’s “ Symphony Number 25 in G Minor Requiem” at the Grand Philharmonic Hall on October 18 th in St. Petersburg . The beneficiaries of this charitable event were originally intended to be the hospices in the St. Petersburg area, but a change was made and proceeds were subsequently directed to support the victims and families of the Beslan school hostage-taking crisis that had occurred one month earlier. The generous hearts of many Russian people were in evidence at this benefit performance.

Accomplishments:

-Participation in the delivery of ongoing palliative care education to Russian clinicians.

-Participation in this education at a University-recognized diploma level course, which facilitates the elevation of Palliative Medicine to specialty level in Russia , thus validating the professional status of Palliative Medicine clinicians in the eyes of their medical specialist colleagues.

Observations:

Morphine in particular, a mainstay in the treatment of end-of-life symptoms, is not readily available to clinicians for their hospice patients. The parenteral morphine that is available must be given intramuscularly, due to bureaucratic regulations that require a physician to “sign for” each dose of opioid administered, as well as to dated misconceptions about the risk of prescribed opioids for end-of-life patients. The maximum dose of morphine available to each patient daily is often limited to 50 mg. Oral morphine preparations are relatively unavailable and prohibitively expensive, due to bureaucratic issues as well as corruption, crime and concerns about distribution.

The culture of the Russian medical system as a whole is not oriented toward giving patients full disclosure and accurate information about their diagnoses. Our Russian colleagues indicated that patients who are referred to them are often surprised when palliative care team members willingly and openly discuss diagnoses and prognoses in detail. Russian palliative care physicians and team members are challenging an entrenched cultural norm as they lead by example in providing information much wanted by patients and their families.

In some instances, due to poverty and societal instability, the presence of a hospice necessitates the presence of an orphanage or other facility to care for children following the death of a parent, particularly that of a mother. At times, in spite of strong and loving connections that are characteristic of many Russian families, surviving family members are simply not financially capable of meeting the needs of orphaned children, and these children are left without support. I was particularly impressed by the extraordinarily creative efforts of the nuns and nurses at Lakhta Hospice in providing these services to the surviving children of their patients.

Progress is being made, albeit in some instances slowly, in the advancement of palliative medicine within the Russian medical system. On a positive note, a new hospice facility is being completed and scheduled to open in the Kaliinsky district of St. Petersburg; less encouraging is the fact that an experienced palliative care physician was not chosen as the medical director of this facility.

Globalization and its effects are ubiquitous. Although St. Petersburg (or simply “Peter” as it is referred to by locals) can boast of one of the most beautiful city centers in Europe, automobile traffic problems have taken on a huge proportion in this city; this made our efforts to travel to the individual hospices in the evenings for Master Class sessions a daunting task.

The level of engagement and dedication on the part of our Russian colleagues was truly inspirational. The doctors and nurses we were privileged to work with are extraordinarily competent clinicians, providing outstanding care to their patients in spite of material and bureaucratic limitations, and were a pleasure to be involved with during our time in St. Petersburg.

Future Activities:

Our teaching group will return to St. Petersburg in April and October of 2005 to present further modules of this diploma-level course, to establish further connections with the Russian hospice community, and to continue to teach and learn from our Russian colleagues.

My sincere thanks to the IAHPC for their generosity in supporting international palliative care initiatives such as the one I participated in.

John C. Ely M.D.
St. Paul , Minnesota USA

Euthanasia yet again

Dr. Derek Doyle

I had a letter from a New Zealand friend the other day telling me that it looks as though the palliative care movement there is winning in the on-going euthanasia debate. There have been two big skirmishes and the opposition to euthanasia is now so strong and articulate that the third battle, expected in the near future, might prove to be the last. Other friends and colleagues in Hong Kong report that the debate rages on there as fiercely as ever.

In the United Kingdom we hoped that the emergence and dramatic development of palliative care would end any talk of euthanasia. Whilst never suggesting that the main objective for palliative care was to prevent euthanasia or physician-assisted suicide (PAS) many nevertheless saw palliative care as the antidote to euthanasia. “Universal access to high quality care will do away with any need for euthanasia or PAS” was the rallying call. We have been proved wrong.

Access to palliative care, though good, is not as universally available as it should be, and largely depends on the referring physician. Contrary to what some have claimed, and many others expected, it does not always eradicate all pain, all physical and psychosocial suffering, and – no surprise to many of us – restore peace, happiness and quiet contentment. If it did we would not be physicians and nurses but miracle workers on a par with our God. Many in the pro-euthanasia lobby cannot accept our ethics doctrine of ‘intent’ and accuse us of hiding behind it when, in their view, we are shortening lives but not admitting it. Interestingly, when for years they have based their case on the unrelieved suffering of cancer patients they have now shifted their focus to those with chronic neurological conditions such as MND / AML , MD , and the dementias. The latest argument they are using in the UK is that many doctors have “an agreement” with their medical colleagues that when their time comes they will be helped to die, yet they will not do the same for their patients. It is an unsubstantiated claim that puzzles many of us who have not heard of such agreements, but nevertheless one that grabs public attention.

In a country where many claim a Christian faith it was assumed that the strength of the Biblical argument against euthanasia would be an effective weapon against it. Once again we have been proved wrong. Today Biblical scholars are quoting texts in favour of and in opposition to euthanasia, and claim it is their Christian duty to do so. No less a figure than the Archbishop of Canterbury, the head of the worldwide Anglican Communion, a man renowned for his scholarship and balanced, fearless leadership has come out strongly opposed to euthanasia. This has not only failed to calm the storm – it has fomented it as religious evangelicals and liberals, some of whom are doctors and nurses, have taken sides for and against euthanasia, threatening to polarise the Church and further puzzle the public.

As I write there is an unconfirmed report that the Zurich clinic which offers physician-assisted suicide (currently legal in Switzerland ) is about to close. In the past year more than 20 people from the UK have gone there, making their relatives liable to a charge of assisting suicide on return to the UK . There have been no convictions, only further confusing the general public. Predictably we are always being told how “successful” euthanasia and PAS in Holland and Oregon are without any of the pro-euthanasia lobby citing contrary medical reports and papers from either country.

As always opinion polls are being used as ammunition and claimed to prove whatever their proponents want. What is striking is how seldom palliative care workers are questioned about how often they are asked about / for euthanasia. Seeing as we all do a thousand or more terminally ill people each year, our insights into ‘public demand’ could be statistically significant. Would the skeptics believe us? Probably not, because their minds are made up and their eyes and ears closed, in spite of their claim to speak for the suffering masses.

Is there anything we can learn from all this? I believe the clamours for euthanasia and PAS will continue with ever-increasing enthusiasm and occasional vitriol, and could soon be features of all westernised, affluent countries. Why? Because they have become secularised whilst, paradoxically, at the same time many of the citizens are seeking spiritual meaning. They are “Dispose of after Use” societies where anything no longer useful is discarded, where tolerance of suffering, of whatever kind, is unacceptable. They are societies which can see good in health and wealth but are unable to see what can come out of suffering and pain, extremely unpleasant as both are. They are societies which in their espousing of fundamentalism can no longer see grey but only white and black, health or suffering, worthy of life or better enabled to die.

As always a plea for euthanasia should be regarded, not as a plea for an expedited death, but as a plea for better care. Our responsibility in palliative care is to ensure that all who need it can access it, whatever their illness; that all we do is of the highest standard and well documented / evaluated; that we do not waste time that could be better spent with our patients, debating with those whose minds are closed and already made up. Arrogance? No, honest and realistic when we know we still have so much to learn and so little time in which to do it if palliative care is to get better and better worldwide. I suspect that when the day comes that all suffering can be relieved in every corner of this globe there will still be people demanding euthanasia. By then they will have found another reason for it! By then people like me will be long dead (without euthanasia) and forgotten.

Derek Doyle, OBE, MD, FRCSE, FRCPE, FRCGP (Scotland)

Regional Report: India

Dr. M.R. Rajagopal

I write this from the background of the Indian context; but this could well be relevant to much of the developing world.

Look back at the development of palliative care in India: from its birth as a hospice in Mumbai in 1986, to its acceptance as an essential part of National Cancer Control Program in 1991, to its establishment in many of the regional cancer centres, to its spread as a community oriented network in Kerala, and to a reversal of the downward trend in opioid consumption in the country. Some of us palliative care workers tend to pat ourselves on our backs – till we are taken aback by someone like Dr Jan Stjernswärd who points out that all considered, the progress is “disappointing”.

When the blinders fall from our eyes, we see the disappointing bits. The policy exists, but only on paper. Oral morphine reaches less than 1% of the needy, even now. The vast majority of institutions treating cancer patients have no palliative care services. There are many states in India which even now have not even a single palliative care facility. It is easy to blame the red tape and the Government, but the fact remains that the medical and nursing professions at large, have not accepted palliative care as an essential part of health care.

We realize very clearly that education of professionals is essential for development of palliative care in India . Many pioneering institutions conduct education programs. But there is a lot of confusion. Who should be the target audience? What should be the minimum objective of teaching programs? Should we just do sensitization programs and leave the professionals to learn more by themselves? How about “foundation courses” of a week to fortnight duration? What exactly do we achieve in these courses? How can we expose nursing and medical students to palliative care? And how do we attract young doctors to take up palliative care?

Perhaps there are no easy answers to these questions. Perhaps we need all sorts of programs. Sensitization programs, no doubt, attract some people to the “new” concept. But didactic teaching seldom changes practice. Undergraduate curricula are already overloaded to the bursting point, and any attempt by a new discipline to muscle in, is resisted. Well, even if the curricula are amended, who is available to teach palliative care anyway?

I think it is time to develop full-time residential courses in pain and palliative care for professionals. That will develop a corps of teachers for tomorrow. Hopefully they will form a critical mass not only to ensure quality palliative care for people who need it, but also to help in integrating palliative care into routine medical practice. And by offering opportunity for career advancement, such courses should attract young professionals.

In Amrita Institute of Medical Sciences in Kochi , Kerala in India , we have started a two year diploma program for doctors – the Diploma in Pain and Palliative Medicine (DPPM). This is the first and only such university-approved course in the country. It started in January 2004, the course is designed to develop the trainee in terms of knowledge, skills and attitude both in palliative care practice and teaching. One does not need to be a specialist to apply; the course is open to any general practitioner. Three residents are taken in every year; for this we got an average of 20 applicants last year and this. Applicants go through a screening process which includes a written test aimed at assessing knowledge and a viva voce to assess attitude. Once selected, the trainee works as a full time resident and earns while he learns - just as in most other postgraduate programs in the country.

In the first six weeks of the course, the trainee goes through a basic training which introduces him to the whole spectrum of pain and palliative medicine. There is a structured training program for the whole two year period, which includes a mandatory rotation through oncology and geriatrics and some elective rotations including one month at another center. In addition to periodic internal assessment, there is a final examination conducted by the university – designed to assess knowledge, skill and attitude.

The Medical Council of India has not yet approved Pain and Palliative Medicine as a separate discipline; that is one obstacle yet to be surmounted. There are other concerns. Will the development of such “specialists” change the art of palliative care to just another mindless technical specialty with too much medicineand too little care? This is something that we will have to guard against. Will there be enough employment opportunities for those who qualify? We hope so; but efforts at generating government policy and at ensuring opioid availability at the national level must continue concurrently.

IAHPC has supported this program with its faculty development grant in 2004. Many visiting professors from the west spend their own time and money to come and teach at this course on a regular basis. Dr Robert Twycross did a SWOT (Strengths, Weaknesses, Opportunities, Threats) analysis of the course for us recently, and such periodic evaluation, we hope, will help to maintain quality. Mrs and Dr Peter Kirk have provided a bursary to assist the students at our courses.

The first batch of these full-fledged palliative care physicians should qualify at the end of 2005. We look forward to them being major forces at effecting change for the future of palliative care in India . We also look forward to many more institutions developing full-time residential courses and developing a critical mass of palliative care professionals.

Dr Rajagopal is a member of the Board of IAHPC and Professor of Pain and Palliative Medicine
Amrita Institute of Medical Sciences
Kochi , Kerala 682026
India

IAHPC Short Story Winners announced

Several months ago we asked readers of this Newsletter to submit short stories pertaining to palliative care and their experiences working in the field. We thank all of you who submitted stories. So many people provided a stark insight into the needs and many times harsh situations in the developing world.

The Winner:  The Compromise

She wants to die on the banks of the holy river, but there is no morphine available there. She seems unrousable, but what if she wakes during the journey in severe pain. She's only 20 years old. She deserves a pain-free death, but also a spiritually meaningful one. She does get both, but it is a delicate balance.

Jenika Graze
Hospice Nepal
Kathmandu , Nepal
www.hospicenepal.org.np

 

The winner will receive the following:

1. A copy of the book Palliative Medicine, by Dr. Roger Woodruff

2. The IAHPC Publication: Palliative Care in the Developing World: Principles and Practice

3. A free institutional membership for your palliative care program. You will also receive an institutional certificate in the mail acknowledging the efforts that the organization is doing to improve palliative care in Nepal.


The recipient writes on hearing of her selection.

Dear Liliana,

Thank you so much.  I am really thrilled to have won, especially as I wrote about a girl whose journey had quite an impact on me.   Also, I have wanted Dr Woodruff's book for awhile, but being a volunteer means that finances are limited.  The IAHPC Publication sounds like it will be very appropriate for my work here in Nepal. 

Thank you.
Jenika Graze

The First Runner Up is: Home based care?

Flies circle like lazy vultures parting the air saturated with the smell of cervical cancer. Too weak to sit up, she reached out and grasped my hand. 33 degrees outside, it felt like 40 under the low tin roof.

"Hospital?" I suggested.

"No, people die there."

Six pairs of weary eyes watch my every move.

David Cameron
Sungardens Hospice, Pretoria , South Africa

This contestant receives the IAHPC Publication: Palliative Care in the Developing World: Principles and Practice

Webmasters Corner

Welcome to the Webmaster's Corner!

  • Bookmark the following link to always view the current newsletter
    http://www.hospicecare.com/news
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Featured IAHPC Section: Getting Started

Getting Started: Guidelines and suggestions for those considering starting a Hospice / Palliative Care Service.

Many people do not know what hospice / palliative care is, and what it is not; what its essential features are and how it can be provided. Spending time (even years) planning a palliative care service is always time well spent.

This series of short papers has been prepared for those interested in starting palliative care services in developing countries, or in developed countries, where knowledge about and funding for palliative care are minimal.
Visit Getting Started Here

Membership System:

IAHPC is pleased to announce we now have our own 128 bit SSL Digital Certificate from Thawte. This is the highest internet encryption available to protect your sensitive data. Thawte.com is the leader & most trusted digital certificate issuer. With this improved security we have streamlined our membership system to a quick easy form for you to join & renew your valued membership with the IAHPC.

Have you renewed your membership for 2005? Renewals are now past due. Renew your membership now to ensure your benefits continue uninterrupted for 2005.
JOIN/RENEW HERE

EXTENDED!
Special Promotion: If you RENEW OR JOIN IAHPC as a member, you can buy the IAHPC Publication "Palliative Care in the Developing World: Principles and Practice" for only an additional $10.00! Don't Delay Join Today!
After joining or renewing you will have the opportunity to purchase this publication.
http://www.hospicecare.com/join.htm

 Looking for an article or section on our website?
View our Site map: http://www.hospicecare.com/sitemap.htm

Visit our Book & Video Shop for your hospice & Palliative care needs.
3 new titles with reviews added this month!
http://www.hospicecare.com/Bookstore/

Coming Events! Do you have a Hospice & Palliative Care event you wish to promote?
A new year is here please visit our Future Events section to view events and add your event to our website. 4 new listings added this month!
http://www.hospicecare.com/announce.htm

Drop by often & don't miss out!

Until next month!
Anne Laidlaw
IAHPC Webmaster

Comments/Questions about our website?
Contact us here

Editor’s Notes

Dr. Farr

Medical Guidelines for Pain Relief in Common Diseases Are Lacking, According to an article in a recent issue of Journal of Palliative Medicine. To read this interesting article go to the URL below and then click on Integrating Palliative Care into Disease Management: Guidelines
http://www.liebertpub.com/publication.aspx?pub_id=41


Send Us Your Best Ideas! – New Section !

If you have an interesting idea on how to promote hospice/palliative care to physicians, patients and government agencies send them to us for possible publication. Please do so in 70 words or less.

Send your best ideas to: Editor IAHPC [email protected]

The following idea was sent to us recently, “National pc/hospice associations should hold their annual professional meetings in their capital city where their parliament and government bodies are located.   The associations then plan events including gov't officials, as well as, setting up meetings for participants to meet their representatives and speak to them about issues related to pc.”

Let’s hear your best ideas!


News From Latvia : Looking for partners

Partnership programm from Latvia.

Dear colleagues,

Our Society of the Children’s Palliative Care in Latvia has won the EOUAL project competition and has got financing for the next 3 years for the new complex of services in children’s palliative care. It includes social reintegration of the family before and after children’s death.

At the present moment we are looking for international partners in the European Union countries, that have had good results in the EOUAL programms. I would like to ask members of your Association who are involved in an EOUAL project, and would like to cooperate with our society, to please contact me.

With best regards,
Dr Anda Jansone
[email protected]


News from Bulgaria

In 1996 the Interregional Cancer hospital created an outpatient pain consulting unit for patients who have cancer caused pain. In 1998, the next step was to create an inpatient structure to treat difficult to control pain. This became the first hospital based inpatient palliative care department. Inpatients have been treated in the department since October 1998.

The department consists of the inpatient unit and an outpatient consulting unit. It has 12 hospital beds, 6 nurses, 1 doctor, a psychologist, a social worker and a priest, as well as 10 caregivers. The members of the team also work in the outpatient consulting unit. 4231 visits were made to the outpatient unit during 2004 and 325 in patients were treated in the inpatient ward for the same year.

Since 2003, together with the medical college Vratsa , the medical college ­ Den Helden, ­ Holland and with the financial help of the Dutch government and MATRA foundation we developed a postgraduate training course for nurses as a subspecialty - palliative care and care for elderly and handicapped patients. The training program was approved by the Ministry of Health, Ministry of Science and Education and Bulgarian Medical Academy . The main target of this project is to teach the future teachers and to create a textbook in Palliative Care Nursing for Bulgaria and Holland . 

We are now training the future teachers of palliative care from five other medical colleges in Bulgaria . The hospital training of future palliative nurses will be the palliative care department of the Interregional Cancer Hospital ­Vratsa . In 2003 we established the Bulgarian Association of Palliative Care. The National health insurance fund created, and funds, a clinical pathway in palliative care. We were authorized by the Bulgarian Ministry of Health to create the national standards in palliative care. We have the intention and we are trying to create a regional, and why not, a national library and information center in palliative care for professionals, caregivers and patients. We also plan to organize teaching seminars in palliative care in April for GPs.

Although only a brief synopsis, these are our future plans and we hope that with hard work and God’s goodwill we shall succeed.

Dr. Nikolay Yordanov MD


EAPC-East Newsletter

The latest issue of the Newsletter contains information on:

  • Update on plans for development of palliative care – recommendations
  • 2nd Global summit of National Hospice and Palliative Care Organisations
  • Work for changing of laws on opioids in Romania
  • A new hospice service is born in Russia
  • The first World Hospice and Palliative Care Day - Voices for Hospices
  • Future Newsletter comes from Budapest

To read the Newsletter go to URL: www.eapceast.org


Reports from the International Observatory on End of Life Care

http://www.eolc-observatory.net/index.htm

 

Botswana Country Report

A country report for Botswana has recently been posted on the website of the International Observatory on End of Life Care
(http://www.eolc-observatory.net/global_analysis/botswana.htm).
Though not financially resource poor, Botswana has a dearth of specialised human resources, particularly in the field of palliative care. Since the first HIV/AIDS case was diagnosed in 1985, the overall prevalence rate has soared to 37.3% in 2003, resulting in a renewed commitment from government and support from the President’s emergency plan for AIDS relief (PEPFAR, 2003). The report identifies ten palliative care services provided by three NGOs and includes information from the WHO community health approach to palliative care for HIV/AIDS and cancer patients in Africa.

I do hope that you have the opportunity to visit this very informative series of pages!


Malawi Country Report

A country report for Malawi has recently been posted on the website of the International Observatory on End of Life Care
(http://www.eolc-observatory.net/global_analysis/malawi.htm).
One of the poorest and least developed countries in the world, Malawi has been badly affected by HIV/AIDS, with an estimated prevalence rate up to 18% in 2003. The report identifies 12 palliative care services currently provided by five organisations, with a national lead taken by Lighthouse. After an innovative collaboration with government, pain control has improved significantly since the introduction of oral morphine and MST. Among the many international organisations that currently provide assistance, Hospice Africa Uganda has featured prominently with regard to advocacy and training.


Uganda Country Report

A country report for Uganda has recently been posted on the website of the International Observatory on End of Life Care
(http://www.eolc-observatory.net/global_analysis/uganda.htm).
The report details the development of Uganda ’s 155 services, currently provided by eight organisations. Against a backdrop of partnership with government, and falling HIV prevalence, attention is also drawn to the influence of Hospice Africa Uganda and the role of the NGO both within Uganda and throughout the region. An additional feature of this report is the extended section on ethical issues which draws on the transcripts of recorded interviews conducted during the project.

Any comments welcome.

Best regards,
Anthony Greenwood

Information Support Officer International Observatory on End of Life Care
Institute for Health Research
Bowland Tower East
Lancaster University
Lancaster LA1 4YG
United Kingdom


IAHPC Clearing House Program: Feedback

Subject: Thanks for the donation

Dear Ms De Lima,

We have recieved the books/journal and CDs sent by the IAHPC Clearing House Program. We are very thankful for your kind consideration, as Shaukat Khanum Cancer Hospital is the only organization made for the treatment of poor cancer patients free of cost. We are a trust based organization. The palliative care unit of our hospital is very happy to receive such helpful books.

Thanks again
Raza Qadeer
Palliative Care Service
7A, R3, MA Johar Town
GPO Box 2072
Lahore , PAKISTAN


Meetings and Courses

Multi-Professional PLUS

St Christopher’s Hospice, London

2-20 May 2005

MP Plus is an exciting and dynamic new course designed for health or social care professionals who may be leaders in their field, now or in the future, and wish to implement local palliative care services. The course includes the established Multi-Professional week and in addition a week of clinical attachment provides an opportunity to see palliative care in practice. Opportunities will be provided to look at issues such as the Management of Change, Communication, Teaching and Presentation Skills.

St Christopher’s invites applicants from developing countries or those with a financial need to apply for a limited number of bursaries.

For more information and the application details, contact Education Administration

Phone: (+44) (0) 208 768 4656
Fax (+44) (0) 208 776 5838
Email: [email protected]
Website: www.stchristophers.org.uk


Conference on Cancer in the Developing World

21-25 March 2005

Cairo , Egypt

The International Union Against Cancer (UICC), in close partnership with the National Cancer Institute of Cairo (NCI) and the Arab Medical Association Against Cancer (AMAAC), is pleased to invite you to attend the conference on “Cancer in the Developing World” from 21-25 March 2005 in Cairo, Egypt.

Health systems in developing countries are often overburdened. Due to lack of funds, cancer control and prevention efforts in many low and middle-income countries fall way behind other health priorities of their national health authorities. National Cancer Control Programmes encounter significant constraints such as the lack of cancer control centres, the deficiency of cancer registries, the unavailability of detection and screening programmes, and, the increasing cost of new medications, treatment and diagnostic facilities.

This conference is an opportunity to gain new insight, develop new understanding as well as exchange experiences and share best practices on cancer control and prevention strategies in developing country settings.

NCI-UICC-AMAAC are looking forward to welcoming you to the vibrant city of Cairo . Please visit http://www.uicc.org, for more information on the conference, the abstract and registrations forms as well as information on hotel reservations.

Best regards.

The Communications Group
The International Union Against Cancer (UICC)
3, rue du Conseil-Général
1205 Geneva
Switzerland


Scientific Program
The updated preliminary Scientific Program is now on the forum website.
To view the program please visit http://www.kenes.com/ifpm/tt.asp

Abstract Submission
You may submit an abstract for poster presentation via the abstract submission form at:
http://www.kenes.com/ifpm/call.asp

Registration and Accommodation
The online registration form is available at http://www.kenes.com/ifpm/reg.asp
Accommodation at special Forum prices may be reserved at http://www.kenes.com/ifpm/accom.asp

If you require any further information regarding the Forum please contact us at [email protected]
or visit the web site at http://www.kenes.com/ifpm.

Kind regards,
Forum Secretariat

IFPM Secretariat
Kenes International
17 Rue du Cendrier
P.O. Box 1725
CH1211, Geneva 1
Switzerland
Tel: + 41 22 908 0488
Fax: +41 22 732 2850
E-mail: [email protected]
Website: http://www.kenes.com/ifpm


People Living With Cancer Live Chat

ASCO’s patient information website, People Living With Cancer will host a chat on Patient Care at the End of Life.

Tuesday, February 22, 2005
2:00 – 3:00 PM ET
http://www.plwc.org/

*Featured Expert:*
Charles Loprinzi, MD Mayo Clinic

During the chat Dr. Loprinzi will answer questions on topics such as:
- How does a person decide when to stop getting chemotherapy?
- When should hospice be considered?
- What is the goal of hospice care?
- Working with the health-care team to treat symptoms at the end of life
- Understanding "do not resuscitate" or "no-code" issues
- The impact on the family and the role of the caregiver
- Communication and decision making
- Emotional needs

For additional information about ASCO’s Live Chat view brochure here
Contact Jeannine M. Salamone at (703) 299-1014
Website at: http://www.plwc.org/

William Farr, MD
Newsletter Editor
www.hospicecare.com

Join IAHPC

Special Promotion Extended: If you RENEW OR JOIN IAHPC as a member, you can buy the IAHPC Publication "Palliative Care in the Developing World: Principles and Practice" for only an additional $10.00!
http://www.hospicecare.com/join.htm

Please consider joining the IAHPC's effort to improve palliative care in developing countries. We recently developed a new sliding fee schedule.
Join by Clicking on the Membership Application Link below
http://www.hospicecare.com/join.htm
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****Thanks to all contributors to this issue.****

7 Ways To Help The IAHPC
https://www.hospicecare.com/give/donate.html

William Farr, MD IAHPC Newsletter Editor
www.hospicecare.com

© 2005 IAHPC Press