university hospital bonn malteser hospital bonn/rhein-sieg achievements of palliative care and...

University Hospital Bonn

Malteser Hospital Bonn/Rhein-Sieg

Achievements of palliative care and societal responses:An ethical perspective



St. Christopher Hospice, London



Palliative Care DevelopmentEurope

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 2010-12UK End of Life Care Strategy 2008

More than 80.000 volunteers in Germany trained



WHO Executive BoardJanuary 2014

Resolution on palliative care

Initiated by Panama, supported byAustralia, 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



Palliative Care DevelopmentGermany: Legislation



Palliative Care DevelopmentGermany: Society

Volunteers: 80.000 volunteers in hospice and palliative careTrained in hospice (and bereavement) care

Media: Media week in November 2012More than 40 films and documentaries

Charta for the severely ill and dying:Round table with 50 society orhealth-policy related institutions



Hospice goes to SchoolGermany

Project week in primary schoolswith 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)



Caring communities

Community carepalliative care delivered by professionals at the home of the patient

Caring communitycare as part of the community lifeneighbors and volunteers in collaboration with professionals



Community ModelKerala, India

Empowerment of the local communityto look after the bed-ridden patients in their area

Develop a cost-effective methodfor the provision of palliative care in the low/middle income setting

Kumar. JPSM 33 (2007) 623-7



Cultural Differences



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 GroupsIreland

McQuillan R, Van Doorslaer O, Pall Med 21 (2007) 635-41



Belgium

Bernheim et al. BMJ 336 (2008) 864-7

„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.“



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) 97-101



Request for Euthanasia

Lack of informationEfficacy of pain and symptom controlConfusion on terminology

What do patients mean and want?AmbivalenceAnticipated sufferingBurden to others

Illusion of control

Slippery slope



Euthanasia in the mediaGermany: newspapers 2006 / 2007

Hahnen et al. Ethik Med 21 (2009) 289 - 305

3%

10%

21%

29%

37%

0% 25% 50%

(hospice) care

withdrawingtherapy

killing on demand

assisted suicide

unclear

Dignity

Autonomy

Unsecurity

Anxieties



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)



Sokrates(496 – 399 v.Chr.)



Euthanasia in Belgium

1432 deaths in 2012 (1,35% of all deaths)



Slippery Slope



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



Palliative Care: Making a Differencewww.eapcnet.eu

university hospital bonn malteser hospital bonn/rhein-sieg achievements of palliative care and...

Documents

palliative care mandatory

palliative care units

complex palliative care

specialist palliative

provision of palliative

palliative medicine

bereavement care media

patient caring community