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European Association for Palliative Care Task Force on Palliative Care for People with Heart Disease

Summary & Background

The existing data suggest that significant gaps exist between palliative care needs of heart failure patients and the provision of palliative care, with few patients, and their families, receiving the appropriate care as the disease reach advanced stage or they approach the end of life [1-3]. This Task Force will establish the current state of clinical practice of palliative care for this particular patient group in European countries and their unmet needs for palliative care and possible approaches to cover them will be assessed.

This will include consideration of appropriate triggers that would suggest early provision of palliative care (understood as supportive care throughout the course of disease, parallel to and together with cardiological care).  At present access to palliative care may be only for people who are thought to be imminently dying and there is a need to ensure palliative care is seen to be helpful and appropriate more widely [4]. Cardio-teams or General Practitioners will provide most palliative care with support from specialized Palliative Care Teams for complex patients.

The Task Force will aim to identify currently existing gaps in care provision, structures and skills needed, as well as in theoretical basics of palliative care interventions, specifically for people with heart failure will allow the development of a research agenda. The Task Force will aim to summarize current practice, and suggest possible management approaches and models of delivering palliative care for adults with heart disease.

1.Kavalieratos D, Kamal AH, Abernethy AP, et al. Comparing Unmet Needs between Community-Based Palliative Care Patients with Heart Failure and Patients with Cancer. J Palliat Med. 2014;17(4):475-481.

2. Xu J, Nolan MT, Heinze K, et al. Symptom frequency, severity, and quality of life among persons with three disease trajectories: cancer, ALS, and CHF. Appl Nurs Res. 2015;28(4):311-315.

3. Evangelista LS, Liao S, Motie M, et al. Does the type and frequency of palliative care services received by patients with advanced heart failure impact symptom burden? J Palliat Med. 2014;17(1):75-79.

4. Kavalieratos D, Mitchell EM, Carey TS, et al. "Not the 'grim reaper service'": an assessment of provider knowledge, attitudes, and perceptions regarding palliative care referral barriers in heart failure. Journal of the American Heart Association. 2014;3(1):e000544.

Aims & objectives

The aim of the Task Force is to improve the care for patients with advanced heart disease, in the first instance, advanced heart failure.

 

 

Background

The number of people suffering from and dying from advanced heart failure is increasing and it is expected this trend will continue to evolve in the coming decades. Optimizing care constantly improves the survival, the quality of life of affected people and the efficacy of the utilization of health service resources. Existing data suggest that large gaps exist between symptom burden and the needs of cardiac patients and current health care provision. Very few patients approaching end of life and their families receive appropriate support and there is an urgent need to stimulate discussion on advance care planning for people with heart disease. Increasing number of people with implanted electronic cardiologic devices enter palliative care services. This may expose both patients and care provides with many challenging questions and dilemmas regarding the respective benefits and risks of keeping those devices fully active whilst approaching end of life.

 

Milestones

 

Date Action
   
February 2014 Invitational workshop in Basel - Meeting of the Initiative Group.
June 2014 Official launch of the Task Force during the EAPC 8th World Research Congress in Lleida, Spain.
October / December 2014 Agreement of HFA to start Joint European Association for Palliative Care (EAPC) and Heart Failure Association (HFA) of the European Cardiac Society Task Force and final adjustment of the Task Force structure
May 2015 Meetings of EAPC representatives during EAPC Congress, Copenhagen and HFA representatives during HFA Congress, Seville 
October 2015 First Meeting of the Joint EAPC and HFA Task Force, Basel

Financial Plan

Management Board of the Hildegarde Hospice Foundation (Hildegard Hospiz Spitalstiftung Basel, Switzerland) has hosted the first invitational meetings of Initiative Group in Basel in February 2014 and Joint Group in October 2015
The rest of the budget is under development.

 

Congresses' presentations & posters

Presentations:

8th EAPC World Research Congress, Lleida, Spain, June 2014

10th Kongress der Deutschen Gellelschaft fur Palliativmedizin, Dusserldorf, Germany, June 2014

Nationaler Palliative Care Kongress 2014, Biel, Schweiz, November 2014

14th World Congress of the European Association for Palliative Care, Copenhagen, Denmark   8- 10 May 2015

Poster:

8th EAPC World Research Congress, Lleida, Spain, June 2014

Heart Failure Congress 2014,17–20 May 2014, Athens, Greece

Upcoming Sessions - Madrid 2017:

Meet the Expert Session 09: How to Overcome Barriers to Early Palliative Care Provision for People with Heart Failure, 20th May 2017, 08:00-08:45

Parallel Session N103: Palliative Care for People with Heart Failure , 20th May 2017, 09:00 - 10:30

 

 

Publications

Reflections on ethical issues in palliative care for patients with heart failure*

Ethical issues in palliative care in heart failure

Taskforce convened to improve care to millions with heart failure

*This document is held under copyright by Hayward Group Ltd, publisher of the European Journal of Palliative Care. It may be downloaded for single academic use only. Reproduction for any other purpose is not allowed. For further information, please contact the journal by clicking here

 

Chair

Piotr Sobanski
Switzerland

Click here to contact by email

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