Contributions by IAHPC Board Members
A new approach to community-based palliative care in Germany
In April 2007, the German government approved a law that gives every citizen in Germany the right to receive “specialized palliative care in the community” (German: “Spezialisierte Ambulante PalliativVersorgung”, SAPV). In order to deliver this service, so called “Palliative Care Teams” (PCTs) are going to be established throughout the country. According to the law, these PCTs should be composed solely of palliative care physicians and nurses. An 8-person-PCT is supposed to cover a population of approx. 250,000, and to take care of those estimated 10% of the dying who require specialized palliative care in order to achieve adequate symptom control and avoid unnecessary hospitalization at the end of life. Psychosocial support is not covered, and is expected to come from non-profit hospice charities, which are eligible for federal subsidies.
The idea in itself sounds plausible, but, as they say in Germany, the devil is in the detail. In this case, there are scores of details awaiting clarification:
- PCTs need to stipulate service contracts with the state-approved health insurances which cover health care costs for 90% of the German population (10% are privately insured). Although the law is now almost two years old, the insurance companies have for the most part not even started negotiations with potential PCTs, despite the fact that several model projects have demonstrated the feasibility of the approach. Since the law was approved, almost 1.5 million Germans have died, 10% of whom did not receive the care that they were entitled to.
- The exact relationship of the new PCTs to the established structures of the complex German medical system is unclear. Practising physicians and general practitioners on the one hand fear intrusions into their territory, and on the other hand would very much like to participate in the distribution of the new funding available for the SAPV, which is estimated at over 100 million Euros per year.
- The health insurances’ conspicuous lack of velocity in implementing the new law is not just a particularly dramatic example of the famed German red tape. Public announcements of the German Federal Health Ministry have created the impression that new funds had been made available to improve the home care of the dying. Health insurance officials privately complain that they have actually been forced to shift resources within the system in order to make funds available for the PCTs, which has proven to be a difficult and time-consuming process.
- The new law requests that the special needs of dying children and adolescents be taken into account in the implementation process. However, no indication is given as to how this recommendation should be put into practice. Psychosocial support, which is not covered by the new law, is of particular importance in pediatric palliative care, and pediatric PCTs face arduous logistic challenges, especially in scarcely populated areas of the country.
Despite these areas of uncertainty, however, the nationwide implementation of PCTs for both adults and children offers the hope for a significant and sustained improvement of home palliative care provision in Germany. The experiences with the new system could help other countries which are in the process of developing their own home palliative care policies. Patience and persistence are undoubtedly required, but cautious optimism appears justified.
Gian Domenico Borasio, MD, DipPallMed
Chair in Palliative Medicine
University of Munich, Germany
The Saga of Euthanasia and Physician Assisted Suicide (PAS) Continues There are times in the UK when you feel you cannot open a newspaper, listen to or view a news bulletin or read the draft programme for a forthcoming palliative care conference without seeing something about euthanasia and / or PAS. The media see the subject as a “human interest story” – of interest and relevance to many of their readers or TV viewers. This has been happening for years and at one time it looked as though palliative care workers would be expected to lecture on it, debate it, write on it and occasionally be verbally attacked on it, for the rest of their professional lives. However, certainly in the UK the scene is changing – admittedly slowly, at times almost imperceptibly, but nevertheless changing.
A few years ago a member of the House of Lords (the upper house of the British Parliament) attempted to introduce a Bill legalising euthanasia and / or PAS. It was well researched, well drafted and at the time was thought to have very considerable support in the Parliament and with the public. It was defeated, largely as a result of outstanding, well-informed debate led by a lady member of the House of Lords, herself a professor of Palliative Medicine. It surprised many in palliative care that, contrary to what we had been led to believe, there was not enthusiasm for euthanasia or PAS within the medical profession. On the contrary many were well informed about the experience of the Netherlands, Oregon and the Zurich clinic.
In England (but not in Scotland which has its own Health Service and different laws) assisting someone to commit suicide is a criminal offence. It came as no surprise therefore when a relative was charged with this crime having assisted a loved one to travel to Zurich. The papers reported on this but with commendable understanding and charity and, with few exceptions, without strident capitalising on someone else’s grief and pain. Knowing that more than 100 people from the UK have now ended their lives in Zurich, with others likely to follow them, it was asked of the UK Prime Minister, Gordon Brown, if he planned to change this law or introduce legislation on PAS. His answer was an unequivocal ‘no’.
In Scotland, partially devolved from England, a Member of the Scottish Parliament (MSP) tried to introduce a Bill which would permit PAS and, in the view of many, be a fore-runner of euthanasia. He had experience in his own family of the suffering that can be the lot of the dying, and has a reputation as a caring, very conscientious young politician. He toured the country collecting evidence and public opinion and presented his case in a dignified, non-trident manner. He went out of his way to learn about palliative care and in particular its provision in Scotland. His proposals fell at the first hurdle.
Much more recently, in the closing months of 2008 and early 2009, one of Scotland’s most popular, effective and dignified lady MSPs has gone public on her rapidly declining health, telling fellow politicians, the media, the public and those she represents that she is dying with Parkinson’s Disease and very strongly wants the right to chose the time and the place of her death. Her accounts of what she feels and what she wants not only for herself but for others in the same boat have moved many but even her attempts to introduce legislation have failed.
It is tempting to suggest that the case for euthanasia or PAS is being defeated, or shall we say made less persuasive, because of the steady advance and development of palliative care services, equitably spread across the whole country. Not true, for there are many places where they are less well developed than others, where there are doctors less knowledgeable about its principles than others, and yet other places where palliative care is not widely available for those with non-malignant conditions.
What is certainly true in the UK is that the public and politicians are at last recognising that if good palliative care is provided the suffering of the dying and the anguish of their loved ones can be relieved so that no case need be made for euthanasia or PAS.
Is the reason for a temporary respite from demands for euthanasia or PAS
nothing to do with palliative care but all to do with the current financial crisis, loss of confidence in the banks, reduced income and such nationwide anxiety and depression that even euthanasia is off the front page?! Are we enjoying a temporary cease-fire because some politicians (not those we have described above) thought to make political capital out of “right to die” issues and Mr and Mrs Public are going through yet another “ you can’t trust politicians” phase !
This saga promises to run and run.
Derek Doyle, OBE, MD, FRCSE, FRCPE, FRCGP
(Scotland)
Getting Started: Guidelines and suggestions for those considering starting a Hospice / Palliative Care Service
(2nd Edition)
(An IAHPC Publication available free on-line)
Dr Derek Doyle, OBE, MD Founding Member and Adviser of the IAHPC (UK)
How often one meets someone who says, " We are determined to start a new hospice or palliative care service but don't know where to start. We all wish there was somewhere where we could learn what to do and what not to do, written by people who have been through all this. We must get it right."
Well, the IAHPC has just that book. It was first published a few years ago and has since been read by hundreds if not thousands of people many of whom have told us how helpful it was. It has now been brought up to date - relevant for readers worldwide. It answers all the most commonly asked questions. It stresses what not to do as much as what to do. It is free of jargon and is honest about the challenge that faces those "Getting Started". Its name - Getting Started: Guidelines and suggestions for those considering starting a Hospice / Palliative Care Service
http://www.hospicecare.com/gs/
Acknowledgments
The author is grateful for the review, valuable comments and contributions received from the following IAHPC Board Members:
Kan-sang Chan, MD (Hong Kong)
Liliana De Lima, MHA (USA)
Roberto Wenk, MD (Argentina)
Roger Woodruff, MD (Australia)
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