Contributions from IAHPC Board Members
The International Primary Palliative Care Research Group - now 5 Years Old
Geoff Mitchell, a GP from Brisbane, Australia and I founded the International Primary Palliative Care Research Group to promote improved recognition of the role of primary care in the delivery and research of palliative care in the community. We advocate for delivering accessible end-of-life care in the community setting. We attempt to accomplish this by networking with our colleagues and offering an annual meeting. We have members from every continent who have contributed to this goal or co-authored publications in the UK, Australia, Germany and Canada that highlight the great potential that primary care has to reach patients when specialist palliative care providers cannot.
One indicator of our success in advocacy is that we have the privilege of giving a plenary session during the European Association of Palliative Care Meeting in Lisbon (May 18 th-20 th 2011). This will be followed by a parallel session where members of the group will focus on the potential of primary palliative care in Africa, Germany and Holland. We feel that membership in this friendly group has really helped to encourage each of us to move this field of primary palliative care forward. If you wish to join the group, whether as a primary care practitioner or just one who is interested in the field, feel free to email me or Geoff Mitchell (see below).
The web address is http://www.uq.edu.au/primarypallcare/ . It contains resources with links to online publications by members, freely available research resources, and educational opportunities. Our next group meeting will be the morning of the 18 th May prior to the conference listed above -- please consider attending this and also the conference. This is an opportunity to network with international colleagues who are active in palliative care research and development in the community.
Back in Scotland, my day job is leading the Primary Palliative Care Research Group at the University of Edinburgh where we are exploring the tremendous potential of primary care in four areas. They are:
- To deliver palliative care beyond just cancer patients but to people with all progressive diseases,
- To start earlier rather than later in the course of the illness,
- To address all needs including the psychological and spiritual, and
- To help more people be cared for in the community.
Please see our website for our vision and recent publications http://homepages.ed.ac.uk/smurray1/index.php
Finally, I wish to highlight a recent “Spotlight” section in the British Medical Journal which our group helped bring together. There are five papers here relevant to palliative care beyond cancer in a package that is freely downloadable from the Internet at http://www.bmj.com/content/341/bmj.c5028
I would like to encourage IAHPC members and colleagues who are interested in developing palliative care research in the community to please make contact and start networking!
With best wishes,
Dr. Murray is a member of the IAHPC board and his biography may be found at the following link:
Palliative care for advanced non-cancer patients
Even though hospice & palliative care was launched in many Asian regions over several decades, there are far more advanced cancer patients than non-cancer patients who have received palliative care. In a retrospective study comparing non-cancer to cancer deaths in Hong Kong 1, only 1.4% of non-cancer patients ever received palliative care prior to their death as compared with 79.2% of cancer patients.
The non-cancer patients were older and had more co-morbid conditions than the cancer patients. Utilization of public health care was more intensive for non-cancer patients and they had more admissions to intensive care units and acute wards, they occupied more bed days and attended more clinics. Within the last two weeks of life, the non-cancer patients had more invasive interventions, fewer symptoms documented, fewer analgesics and sedatives prescribed, less do-not-resuscitate orders, and more cardiopulmonary resuscitation performed. Dyspnoea, edema, pain, and fatigue were among the most commonly documented symptoms in both groups.
A higher proportion of advance care planning (ACP) discussions were first documented within three days prior to death in patients with chronic obstructive pulmonary disease and congestive heart failure than in patients with chronic renal failure or cancer 1.
Recognizing the need for developing palliative care for advanced non-cancer patients, a pilot program of palliative care for chronic renal failure patients was launched in Hong Kong during 2006. Disease management is an important element for non-cancer palliative care. Such a program has several characteristics, among them are: 1. Close collaboration of palliative care specialists with organ specialists through operating joint clinics, so that mutual referrals and consultation can be done without a barrier, and 2. The inclusion of a palliative care physician during the decision making phase regarding renal replacement therapy.
In a review of 45 patients in the palliative care group and 134 patients in a dialysis group 2, the patients in the palliative care group were older, had marginally higher modified Charlson Comorbidity Index, and had more diabetics. There was no difference in the mean number of symptoms in the palliative care and the dialysis groups. Fatigue, cold aversion, pruritus, lower torso weakness and difficulty sleeping were the five most prevalent symptoms in both groups, and were also among the most intense symptoms 2.
Following this pilot study, the Hong Kong Hospital Authority funded palliative programs for non-cancer patients in 2010. This program initially targets patients with chronic renal failure and chronic respiratory diseases. The service delivery model includes an inpatient consultative service, a joint palliative care and organ-specialty clinic and a palliative home care service. As the prognosis of advanced non-cancer patients is less predictable, a discussion on advanced care planning is an important part of the care plan. Advanced directives using a non-legislative approach has recently been promoted in Hong Kong. This approach will enhance the promotion of palliative care among advanced non-cancer patients.
- Comparing non-cancer and cancer deaths in Hong Kong. Journal of Pain & Symptom Management. KS Lau, DMW Tse, WT Chen, PT Lam, WM Lam, KS Chan. 2010 August 19 . (Epub ahead of print)
- Symptom burden and quality of life in end-stage renal disease: a study of 179 patients on dialysis and palliative care. Yong DS, Kwok AO, Wong DM, Suen MH, Chen WT, Tse DM. Palliat Med. 2009 Mar; 23(2):111-9.
Dr. KS Chan is a member of the Board of IAHPC, his biography may be viewed at :
Palliative Care in India - 2010
In the absence of any other reliable indicator of access to palliative care in India, we are forced to rely on opioid consumption data. India has only one oral opioid that belongs to the step III analgesic ladder - it’s morphine. Unfortunately, in the recent past, India has not regularly submitted its annual consumption of morphine to INCB. It is gratifying to note that the Government of India has now put in place a new system to collect this data and report it to the INCB with the Narcotics Commissioner of India in charge of the process. The new system became effective in 2010 and we hope to have more reliable data in the future. We do have another, even more indirect, indictor of morphine consumption which is the quantity of morphine sold from the Government Opium and Alkaloid Works (GOAW).
Consumption chart morphine_from_goaw.xlsx
The GOAW is the only agency that manufactures morphine powder from opium in India. It supplies the powder to all manufacturers of formulations of morphine in the country. As the chart shows, while the consumption has certainly improved, it has not occurred in the leaps and bounds we had hoped to see.
The chart demands some explanations. The peak in 2001 was caused by the Government of India buying up large quantities of morphine using WHO funds to supply, at no cost, the Regional Cancer Centers (RCCs); we do know that much of it was not used and later destroyed on the expiry date. The reduction in the subsequent years could have been due to the use of left over supplies in several RCCs. The decline in 2006 occurred because the GOAW had technical manufacturing problems causing an interruption of the supply. This latter decline could account for some of the increase in supply observed in 2007. The supply levels in 2008 and 2009 seem to be in keeping up with demand.
The slow rise in morphine consumption in India is disappointing and brings our attention to some of the comments that Liliana De Lima wrote in the April 2009 issue of this newsletter http://www.hospicecare.com/news/09/04/reflections_india.html. As she said, the development of palliative care outside Kerala has been particularly poor and needs to be concentrated on. Looking back over the last 17 years since the formation of Indian Association of Palliative Care and the birth of the Pain and Palliative Care Society at Calicut the major lacuna in progress appears to have been in advocacy both at the Government and media level. This has resulted in palliative care remaining largely a non-governmental activity with little integration into mainstream medicine. We need a concerted plan so that medical and nursing education includes palliative care so that practitioners in hospitals in the country can effectively treat pain and provide palliative care.
Unrelieved pain and suffering in India is unnecessary and dehumanizing, as it is in the rest of the developing world. While Indian palliative care professionals keep working towards the goal of access to effective pain treatment and palliative care, could there be a global strategy to identify and remove the barriers to this type of care that is specific to the developing world?
Dr. Rajagopal is a member of the IAHPC Board. Please view his biography at the following link: