Understanding Health Beliefs in End of Life Care.

Exploring patients’ beliefs at the end of life improves shared decision making, ensures patient centred care, and helps GPs navigate complex consultations with sensitivity

Why Health Beliefs Matter

Patients’ beliefs influence how they approach treatment, palliative care, and discussions about death.

Understanding beliefs can:
- Improve shared decision-making
- Respect patient autonomy
- Reduce conflicts with family and care teams

Frameworks for Understanding Health Beliefs

Kleinman’s Explanatory Model
- Key Point: Differentiates “disease” (biomedical) from “illness” (patient experience).
- Visual: Diagram showing Disease vs Illness axis.
  - GPF Tip: “Ask patients how they understand their condition and what it means to them.”
B. Leventhal’s Common-Sense Model

Key Point: Beliefs influence coping, behaviour, and treatment adherence.
Visual: Flowchart: Patient beliefs → Coping → Actions → Outcomes.
- GPF Tip: “Explore beliefs about cause, timeline, consequences, controllability, and cure.”

Categories of Health Beliefs

A. Cultural and Religious Beliefs
- Influence: treatment decisions, communication preferences, rituals, family involvement.
- Examples:
  - Islamic beliefs may prioritize preserving life and family-centred decisions
  - Confucian-influenced patients may prefer family manage disclosure
  - Jewish patients may balance preserving life with avoiding suffering
    - GPF Tip: “Always ask about beliefs and preferred decision-making roles.”

B. Personal / Individual Beliefs

Influence: past experiences, autonomy, fear of suffering, holistic approaches.
Examples:
- Past negative experiences in hospitals may cause avoidance of treatment
- Strong desire for personal autonomy
- Preference for complementary therapies
  - GPF Tip: “Explore individual values and previous experiences in each consultation”

Practical GP Strategies

Approaches for Respectful Consultations

Use open ended questions:
- What matters most to you at this stage of your illness?
- Are there any treatments that you would or wouldn’t want
Involve family if the patient wants, but confirm patient consent
Negotiate care plans balancing beliefs and safety

Reflection & Self Check

Reflection on Your Practice

Prompts for Trainees/Resident Doctors:
- Think of a consultation where a patient’s beliefs influenced care - how did you explore them?
- What strategies worked? What could you improve?
- How could you adapt your communication in the future
- Find the IMP! (always key in these conversations - click here for more info on Find the IMP)

Books:

Medical & Professional Perspectives:

Being Mortal: Medicine and What Matters in the End by Atul Gawande
A compelling exploration of how modern medicine often overlooks the importance of quality of life in end-of-life care. Gawande emphasizes the need for a more humane approach to aging and death.

The Oxford Handbook of Palliative Care (3rd Edition) by Max Watson, Stephen Ward, Nandini Vallath, Jo Wells, Rachel Campbell
A comprehensive guide for healthcare professionals, this handbook covers palliative care principles, clinical practices, and ethical considerations, making it an essential resource for those involved in end-of-life care.

Hard Choices for Loving People: CPR, Feeding Tubes, Palliative Care, Comfort Measures, and the Patient with a Serious Illness (6th Edition) by Hank Dunn
This book provides clear explanations of medical decisions at the end of life, helping patients and families understand their options and make informed choices.

Cultural & Religious Perspectives

Understanding End-of-Life Practices: Perspectives on Culture and Religion
An insightful exploration of how different cultures and religions approach death and dying, highlighting the importance of cultural sensitivity in providing end-of-life care.

The Tibetan Book of Living and Dying by Sogyal Rinpoche
A spiritual guide that blends Tibetan Buddhist teachings with practical advice on dying, death, and living a meaningful life.

Philosophical & Reflective Works

Final Exam: A Surgeon's Reflections on Mortality by Pauline Chen
A surgeon's personal reflections on death and dying, offering a candid look at how medical professionals confront their own mortality.

That Good Night: Life and Medicine in the Eleventh Hour by Sunita Puri
A memoir by a palliative care physician that delves into the complexities of providing end-of-life care and the personal stories that shape this work.

Personal Narratives & Memoirs

A Year of Magical Thinking by Joan Didion
A poignant memoir that explores the author's grief following the sudden death of her husband, offering insights into the personal experience of loss and mourning. Death With Dignity

Intervals by Marianne Brooker
A daughter's profound account of her mother's battle with multiple sclerosis and her decision to end her life, highlighting issues of disability, autonomy, and the ethics of assisted dying. The Guardian

Websites:

Marie Curie – Palliative Care Knowledge Zone

Marie Curie's Palliative Care Knowledge Zone offers expert information and support to help healthcare professionals care for people living with a terminal illness. It includes resources on communication, advance care planning, and caring for underserved communities. Marie Curie

Macmillan Cancer Support – End of Life Care

Macmillan provides practical and emotional support for those nearing the end of life. Their resources cover topics such as symptom management, emotional support, and care at home, along with guidance on sorting out practical and financial affairs. Macmillan Cancer Support

NHS – End of Life Care

The NHS website offers information for people approaching the end of their life and those planning for their end-of-life care. It includes details on what to expect from end-of-life care, where it can take place, and how to plan ahead. nhs.uk

Hospice UK – Resources for End of Life Directory

Hospice UK's directory serves as a one-stop shop for end-of-life services and resources. It helps individuals plan a funeral or access services related to end-of-life care, including funeral directors and advance care planning services. Hospice UK

RCGP – End of Life and Palliative Care Toolkit

The Royal College of General Practitioners provides a toolkit to support healthcare professionals in delivering quality care to patients nearing the end of life. It includes guidance on clinical management, communication, and ethical considerations. elearning.rcgp.org.uk

NHS Knowledge and Library Hub – Palliative and Hospice Care

This hub offers a range of free resources available to healthcare professionals working or studying in England. It provides access to journals, books, clinical decision support tools, and databases like Medline, supporting evidence-based practice in palliative and hospice care. Knowledge and Library Services

Dying Matters – Resources

Dying Matters provides leaflets and resources to help individuals and professionals deal with different aspects of death, dying, and bereavement. These materials are available in various formats, including easy read and print-at-home versions. Hospice UK

Palliative and End of Life Care Profiles – Resources Directory

This directory includes policy and guidance on different care settings for palliative and end-of-life care, such as care homes, communities, hospice, hospital, and social care. It offers resources to support professionals in delivering quality care across various settings. fingertips.phe.org.uk

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