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University Hospital Bonn Malteser Hospital Bonn/Rhein-Sieg Achievements of palliative care and societal responses: An ethical perspective.

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Presentation on theme: "University Hospital Bonn Malteser Hospital Bonn/Rhein-Sieg Achievements of palliative care and societal responses: An ethical perspective."— Presentation transcript:

1 University Hospital Bonn Malteser Hospital Bonn/Rhein-Sieg Achievements of palliative care and societal responses: An ethical perspective

2 University Hospital Bonn Malteser Hospital Bonn/Rhein-Sieg St. Christopher Hospice, London

3 University Hospital Bonn Malteser Hospital Bonn/Rhein-Sieg Palliative Care Development Europe Palliative care as a medical specialty in the UK and Ireland, as a subspecialty in Poland, Romania, Slovakia, Germany, France and Czech Republic Increasing number of academic chairs in palliative medicine, including nursing, psychosocial, spiritual and hospice care National strategies for palliative care, for example: Swiss National Strategy for Palliative Care UK End of Life Care Strategy 2008 More than volunteers in Germany trained

4 University Hospital Bonn Malteser Hospital Bonn/Rhein-Sieg WHO Executive Board January 2014 Resolution on palliative care Initiated by Panama, supported by Australia, Chile, Ghana, Libyia, Malaysia, South Africa, Spain, Switzerland, USA World Health Assembly in June New: Public health approach with 4 elements: National strategies, adequate ressources, training and education, access to essential medicines

5 University Hospital Bonn Malteser Hospital Bonn/Rhein-Sieg Palliative Care Development Germany: Legislation 2004 Palliative care units: fixed daily rates, no DRGs 2004 Volunteer services: reimbursement for coordinators 2007 Hospitals: code for complex palliative care 2007 Home : patients’ right for specialist palliative care 2009 ACP: Amendment to the guardianship law 2009 Medical training: palliative care mandatory 2010 Hospices: drugs of deceased patients can be redispensed

6 University Hospital Bonn Malteser Hospital Bonn/Rhein-Sieg Palliative Care Development Germany: Society Volunteers: volunteers in hospice and palliative care Trained in hospice (and bereavement) care Media: Media week in November 2012 More than 40 films and documentaries Charta for the severely ill and dying: Round table with 50 society or health-policy related institutions

7 University Hospital Bonn Malteser Hospital Bonn/Rhein-Sieg Hospice goes to School Germany Project week in primary schools with hospice volunteers Stories, films, playing, handicrafts, final presentation with parents Children and parents were really enthusiastic, and even the sceptics were not critical any more… (teacher)

8 University Hospital Bonn Malteser Hospital Bonn/Rhein-Sieg Caring communities Community care palliative care delivered by professionals at the home of the patient Caring community care as part of the community life neighbors and volunteers in collaboration with professionals

9 University Hospital Bonn Malteser Hospital Bonn/Rhein-Sieg Community Model Kerala, India Empowerment of the local community to look after the bed-ridden patients in their area Develop a cost-effective method for the provision of palliative care in the low/middle income setting Kumar. JPSM 33 (2007) 623-7

10 University Hospital Bonn Malteser Hospital Bonn/Rhein-Sieg Cultural Differences

11 University Hospital Bonn Malteser Hospital Bonn/Rhein-Sieg What would be considered the extended family in the settled community is the close family for Travellers… Travellers believed that speaking openly about serious illness, such as cancer, would cause the patient to give up hope… Travellers prefer hospital to hospice care, as hospital care represents hope… Travellers do not consider death at home acceptable… Ethnic Groups Ireland McQuillan R, Van Doorslaer O, Pall Med 21 (2007)

12 University Hospital Bonn Malteser Hospital Bonn/Rhein-Sieg Belgium Bernheim et al. BMJ 336 (2008) „A substantial proportion of Belgian care givers seem to consider euthanasia as a medical act that, with due prudence, is in line with their commitment to palliative care.“

13 University Hospital Bonn Malteser Hospital Bonn/Rhein-Sieg EAPC Task Force on Ethics The provision of euthanasia and physician-assisted suicide should not be part of the responsibility of palliative care. `Terminal’ or `palliative’ sedation in those imminently dying must be distinguished from euthanasia. Matersvejd et al., Pall Med 17 (2003)

14 University Hospital Bonn Malteser Hospital Bonn/Rhein-Sieg Request for Euthanasia Lack of information Efficacy of pain and symptom control Confusion on terminology What do patients mean and want? Ambivalence Anticipated suffering Burden to others Illusion of control Slippery slope

15 University Hospital Bonn Malteser Hospital Bonn/Rhein-Sieg Euthanasia in the media Germany: newspapers 2006 / 2007 Hahnen et al. Ethik Med 21 (2009) Dignity Autonomy Unsecurity Anxieties

16 University Hospital Bonn Malteser Hospital Bonn/Rhein-Sieg Request for Euthanasia Patients are involved in an active process of constructing the course of disease. They try to balance life time and anticipated agony  perception of time is distressing. Dying process is anticipated as terrible and scary  conflict with available schemes of a rapid and painless dying. Anticipated pictures (agony and dying process) are highly available  patients experience them as intrusive. Coping strategies are focused on avoidance. Pestinger et al. (submitted)

17 University Hospital Bonn Malteser Hospital Bonn/Rhein-Sieg Sokrates (496 – 399 v.Chr.)

18 University Hospital Bonn Malteser Hospital Bonn/Rhein-Sieg Euthanasia in Belgium 1432 deaths in 2012 (1,35% of all deaths)

19 University Hospital Bonn Malteser Hospital Bonn/Rhein-Sieg Slippery Slope

20 University Hospital Bonn Malteser Hospital Bonn/Rhein-Sieg The provision of euthanasia and physician-assisted suicide should not be part of the responsibility of palliative care Patients wishing for hastened death need respectful communication and acknowledgement of their wish Information on range and efficacy of palliative care options is needed Legislation of euthanasia or physician-assisted suicide has inherent risks Conclusions

21 University Hospital Bonn Malteser Hospital Bonn/Rhein-Sieg Palliative Care: Making a Difference


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