Heart Disease (2021)

Background

The number of people suffering from and dying of advanced heart failure is increasing and is expected to continue to grow in the coming decades. The progress in cardiological management has slowed the disease deterioration and has decreased substantially the risk of death, predominantly the sudden cardiac death. As result, people affected by heart failure live longer and are getting older, experiencing consequences of disease progression and aging including age related concomitant disease. All of these jeopardize the quality of life of affected people and increase the utilization of health service resources. Experiencing disease progression and threatening life limitation causes a number of symptoms and problems of emotional, psychological, social, existential/spiritual dimensions. These can be quite complex and can go fare beyond what the cardio-teams are used to address, but lying in the scope of usual multiprofessional PC services. In the modern medicine awareness of these kind of interdisciplinary needs should promote the cooperation disciplines i.e., cardiology and PC. Existing data suggest that large gaps exist in addressing symptom burden and PC needs of cardiac patients 1-3. Very few people with advanced heart failure and those approaching end of life, as well as their families receive appropriate PC support. This creates an urgent need to stimulate discussion on PC provision for people with heart disease. Involvement of PC into usual cardiac care improves advance care planning, quality of life, symptom control, addressing of psychosocial and spiritual problems and preventing of suffering should on the top of optimal cardiologic management.4 Specific task for cooperation between PC and cardiology should be more frequent reprogramming cardioverter-defibrillators to avoid high voltage interventions in people approaching predictable death.

References

Kavalieratos D, Kamal AH, Abernethy AP, Biddle AK, Carey TS, Dev S, Reeve BB, Weinberger M. Comparing Unmet Needs between Community-Based Palliative Care Patients with Heart Failure and Patients with Cancer. J Palliat Med 2014;17:475-481.
Xu J, Nolan MT, Heinze K, Yenokyan G, Hughes MT, Johnson J, Kub J, Tudor C, Sulmasy DP, Lehmann LS, Gallo JJ, Rockko F, Lee MC. Symptom frequency, severity, and quality of life among persons with three disease trajectories: cancer, ALS, and CHF. Appl Nurs Res 2015;28:311-315.
Evangelista LS, Liao S, Motie M, De Michelis N, Ballard-Hernandez J, Lombardo D. Does the type and frequency of palliative care services received by patients with advanced heart failure impact symptom burden? J Palliat Med 2014;17:75-79.
Rogers JG, Patel CB, Mentz RJ, Granger BB, Steinhauser KE, Fiuzat M, Adams PA, Speck A, Johnson KS, Krishnamoorthy A, Yang H, Anstrom KJ, Dodson GC, Taylor DH, Jr., Kirchner JL, Mark DB, O’Connor CM, Tulsky JA. Palliative Care in Heart Failure: The PAL-HF Randomized, Controlled Clinical Trial. J Am Coll Cardiol 2017;70:331-341.

AIMS

. To improve care for patients with advanced heart disease by establishing palliative care as a usual component of comprehensive care for people with heart disease.

To promote and consolidate therapeutic dialogue and cooperation between palliative care and cardiac teams, providing the best possible care for patients and the best possible support for their relatives.
To create a platform of exchange for experts dealing with palliative care for people with heart disease from different continents / across the world.

Team

PIOTR SOBANSKI

Chair

Switzerland

Click here to contact by email

PHILIP LARKIN

Co-Chair

Switzerland

Click here to contact by email

TASK FORCE MEMBERS

Bernd Alt-Epping (D)
Mary Brice (UK)
Sarah Goodlin (US)
Tomas Grodzicki (PL)
Karen Hogg (UK)
Daisy Janssen (NL)
Miriam Johnson (UK)
Malgorzata Krajnik (PL)
Carlo Leget (NL)
Manuel Martinez-Sellés (E)
Luis Parente Martins (PT)
Mateo Moroni (IT)
Paul Mueller (US)
Lourdes Rexach (E)
Mary Ryder (IR)
Emily Stowe (UK)
Steffen Simon (D)
Sonja McIlfatrick (NI) – EAPC Board link

PUBLICATIONS AND PRESENTATIONS:

Sobanski PZ, Alt-Epping B, Currow DC, Goodlin SJ, Grodzicki T, Hogg K, Janssen DJA, Johnson MJ, Krajnik M, Leget C, Martinez-Selles M, Moroni M, Mueller PS, Ryder M, Simon ST, Stowe E, Larkin PJ. Palliative Care for people living with heart failure – European Association for Palliative Care Task Force expert position statement. Cardiovasc Res 2019.Palliative Care for people living with heart failure – European Association for Palliative Care Task Force expert position statement.
Cardiovasc Res. 2019, cvz200. https://doi.org/10.1093/cvr/cvz200

Piotr Aszyk SJ i wsp (2018) Declaration of the medical community representing cardiology, palliative care and internal medicine indicating the importance of palliative care in the comprehensive care for people with heart disease [language: Polish]. Palliat Med Pract 12(1):64-66. https://journals.viamedica.pl/palliative_medicine_in_practice/article/view/58274

Piotr Aszyk SJ et al (2018) Comment on the Declaration of the medical community representing cardiology, palliative care and internal medicine indicating the importance of palliative care in the comprehensive care for people with heart disease [language: Polish]. https://www.mp.pl/etyka/kres_zycia/179310,opieka-paliatywna-przy-ns

EAPC Blog Feb 22 2018 Winter Summit in Palliative Medicine – Heart and Spirit in Palliative Care view here

15th World Congress of the EAPC, Madrid May 2017: Meet the Expert Session “How to Overcome Barriers to Early PC Provision for People with Heart Failure

*Martínez Sellés Oliveria Soares M, Díez-Villanueva P, Smeding RM, Alt-Epping B, Janssen DJ, Leget CJ, Albert M, Sobański P, Losada A, Oliver DJ. (2017) Reflections on ethical issues in palliative care for patients with heart failure. European Journal of Palliative Care 24(1): 18-22

EAPC Blog March 15 2017 Ethical issues in palliative care in heart failure

EAPC Blog Oct 19 2015 Task Force convened to improve care to millions with heart failure

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

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

Poster:

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

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

Abstracts:

15th World Congress of the EAPC, Madrid May 2017

Conferences:

Winter summit in palliative medicine Bydgoszcz, 12 December 2017: “Heart and Spirit
in Palliative Care”

Web-Interviews:

Where is Palliative care in Europe heading? An interview with Prof Philip Larkin, President of the EAPC. View here

How palliative care can help people with heart failure: An interview with Prof Sarah Goodlin.

Needs Assessment Tool: Progressive Disease – Heart Failure (NAT: PD-HF)

Needs Assessment Tool: Progressive Disease – Heart Failure (NAT: PD-HF)

Needs Assessment Tool: Progressive Disease – Heart Failure (NAT: PD-HF) – German Version

Needs Assessment Tool: Progressive Disease – Heart Failure (NAT: PD-HF) – Dutch Version

English version published with permission from Dr David Currow.

Dutch version published with permission from Dr Daisy J Janssen.