Physician talking confidentially with a patient. The possibilities of palliative care and the patient's own wishes and fears should be discussed with the appropriately specialized doctors at an early stage., iStockphoto.com | andrei_r © iStockphoto.com | andrei_r

Medicine and Healthcare

Optimal Care at the End of Life?

Study examines palliative care for adults with congenital heart disease

Scientific name of the study

Palliative care in cardiology with a focus on adults with congenital heart defects

Today, most people with a congenital heart defect can live to a good age. But they are not cured. Moderate and severe congenital heart defects, in particular, are often very demanding on the body and can expose people to a variety of critical situations, complications, and risks throughout their adult lives.

This makes it even more important to provide good palliative care and to prepare for emergencies as independently as possible. But does this happen early enough? And what are the potential barriers? We are now investigating these questions in a comprehensive study.

  • Good to know

    Palliative Care: A Cloak for a Better Quality of Life

    Physician talking confidentially with a patient. The possibilities of palliative care and the patient's own wishes and fears should be discussed with the appropriately specialized doctors at an early stage. © iStockphoto.com | andrei_r
    Physician talking confidentially with a patient. The possibilities of palliative care and the patient's own wishes and fears should be discussed with the appropriately specialized doctors at an early stage.

    The holistic approach of palliative care aims to spare patients with incurable diseases unnecessary suffering and to enable them to lead a self-determined life.

    The French physician Guy de Chauliac wrote about "Cura Palliativa" in the 14th century, providing one of the oldest contemporary testimonies to the concept of palliative care. Derived from the Latin word "palliare," which means to wrap, soothe, and protect, the World Health Organization (WHO) now defines palliative care as “an approach that improves the quality of life of patients (adults and children) and their families who are facing problems associated with life-threatening illness. It prevents and relieves suffering through the early identification, correct assessment, and treatment of pain and other problems, whether physical, psychosocial, or spiritual.“

    Focus on Quality of Life

    In its 2002 definition, the WHO listed the following characteristics:

    Palliative care

    • Provides relief from pain and other distressing symptoms
    • Affirms life and regards dying as a normal process
    • Intends neither to hasten or postpone death
    • Integrates the psychological and spiritual aspects of patient care
    • Offers a support system to help patients live as actively as possible until death
    • Offers a support system to help the family cope during the patient’s illness and in their own bereavement
    • Based on a team approach to address the needs of patients and their families, including bereavement counselling, if indicated
    • Will enhance quality of life, and may also positively influence the course of illness
    • Is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing complications

    See also Deutsche Gesellschaft für Palliativmedizin (German Society of Palliative Medicine).

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Shared Decision-Making

Good palliative care is the result of shared decision-making between palliative care physicians, the patient, and the patient's family. In the case of congenital heart disease, close collaboration between ACHD and palliative care is also important. This means that adults with a congenital heart defect must be able to talk to their doctor as early as possible about their fears and wishes for care. This is the only way to decide together on the type of care that will best meet their needs. It can be very helpful to discuss advance directives and health care proxies with your doctor.

Helpful in an Emergency: Advance Directives and Health Care Proxies

Advance directives and health care proxies are two important documents that make it easier for family members and doctors to act in a patient's best interest if he or she is temporarily or permanently unable to make decisions or communicate.

  • Good to know

    Living Will and Health Care Proxy

    In conjunction with the living will, the health care proxy helps family members and treating physicians to carry out the patient's wishes in the best possible way. © iStockphoto.com | Corinna71
    In conjunction with the living will, the health care proxy helps family members and treating physicians to carry out the patient's wishes in the best possible way.

    An advance directive is a precautionary measure that allows a patient to specify which medical procedures he or she wants or does not want in a given situation.

    For example, in the event that the patient is unable to give his or her consent to medical treatment, the living will specifies the circumstances in which the patient agrees to life-prolonging measures and which treatment methods he or she refuses, such as whether he or she wants to be artificially fed or ventilated or whether he or she agrees to organ donation.

    The German Federal Ministry of Health provides important information about advance directives.

    With an advance directive, patients define their personal wishes for medical treatment in an emergency. A health care proxy, on the other hand, designates who will act as their agent and communicate their wishes to doctors and medical staff. In conjunction with the living will, the health care proxy helps family members and treating physicians to carry out the patient's wishes in the best possible way, even if medical situations arise that could not yet be anticipated in the living will.

    The Federal Ministry of Justice provides important information on health care proxies.

    Visit the Deutsche Herzstiftung (German Heart Foundation) website for more information.

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Too Few Patients Receive Palliative Care

Although cardiovascular disease is the leading cause of death in Germany, very few patients receive palliative care. This is a cause for concern. We know that early access to palliative care is associated with a significantly higher quality of life for patients, even at the end of life.

With a survey of participants in the National Registry, we want to find out to what extent adults with congenital heart defects, regardless of the severity of their heart defect, have dealt with this topic and what their opinions and considerations are regarding palliative care.

Our study is supported by the SchoberStiftung für christliche Hospizarbeit.

Survey until December 03, 2023

The National Registry patient survey will run until December 3, 2023 and will be anonymous. This means that it will not be possible to identify the person behind the answers. Approximately 14,000 patients with mild, moderate, and severe congenital heart defects have been invited to take part.

The results will be used to identify potential gaps in palliative care and opportunities for improvement. The goal is to enable all patients with congenital heart defects to receive the best possible individualized care throughout their lives, right up to the end of their lives.

This study is funded by the SchoberStiftung für christliche Hospizarbeit. © SchoberStiftung für christliche Hospizarbeit
This study is funded by the SchoberStiftung für christliche Hospizarbeit.

In charge of the project:

  • Dr. med. Ulrike Bauer, Wolfram Scheible für Nationales Register © Wolfram Scheible für Nationales Register

    Dr. med. Ulrike Bauer

    Ulrike Bauer, born in 1958, is the Scientific Managing Director of the National Register for Congenital Heart Defects and the Competence Network for Congenital Heart Defects. More

    Kompetenznetz Angeborene Herzfehler e. V.
    Network Headquarters

    Augustenburger Platz 1
    13353 Berlin
  • Prof. Dr. med. Helmut Baumgartner, UKM © UKM

    Prof. Dr. med. Helmut Baumgartner

    Helmut Baumgartner is Director of the Klinik für Kardiologie III: Center for Congenital and Acquired Heart Defects (EMAH) at the University Hospital Münster. More

    Universitätsklinikum Münster
    Klinik für Kardiologie III: Angeborene Herzfehler (EMAH) und Klappenerkrankungen

    Albert-Schweitzer-Campus 1
    48149 Münster
  • Prof. Dr. Dr. med. Gerhard-Paul Diller, UKM © UKM

    Prof. Dr. Dr. med. Gerhard-Paul Diller

    Gerhard-Paul Diller is a senior physician and a specialist in internal medicine and cardiology with additional qualification in ACHD (adult congenital heart disease). He practices at the Klinik für Kardiologie III: Center for Congenital and Acquired Heart Defects (EMAH) at the University Hospital Münster. He is a Visiting Professor at the Imperial College London. More

    Universitätsklinikum Münster
    Klinik für Kardiologie III: Angeborene Herzfehler (EMAH) und Klappenerkrankungen

    Albert-Schweitzer-Campus 1
    48149 Münster
  • Dr. rer. medic. Paul Christian Helm, Dipl.-Psych., Wolfram Scheible für Nationales Register © Wolfram Scheible für Nationales Register

    Dr. rer. medic. Paul Christian Helm

    Kompetenznetz Angeborene Herzfehler e. V.
    Network Headquarters

    Augustenburger Platz 1
    13353 Berlin
  • Prof. Dr. med. Philipp Lenz, UKM © UKM

    Prof. Dr. med. Philipp Lenz

    Philipp Lenz is an internist, gastroenterologist and palliative care physician who heads the Center for Palliative Medicine at the University Hospital Münster (UKM).

    Universitätsklinikum Münster
    Zentrale Einrichtung Palliativmedizin - Universitätsklinikum Münster (UKM)

    Albert-Schweitzer-Campus 1
    Gebäude W 30
    48149 Münster
  • Dr. med. Renate Schmidt, UKM © UKM

    Dr. med. Renate Schmidt

    Renate Schmidt is a specialist in internal medicine and cardiology with a focus on ACHD and palliative medicine and works as a senior physician in the team of the Central Palliative Medicine Unit at the University Hospital Münster (UKM).

    Universitätsklinikum Münster
    Zentrale Einrichtung Palliativmedizin - Universitätsklinikum Münster (UKM)

    Albert-Schweitzer-Campus 1
    Gebäude W 30
    48149 Münster

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