Symbolic image of patient-centered hospice care.

Redefining End-of-Life: How to Advocate for Personalized Hospice Care

Mira Elwood in Health & Wellness November 2025 • 4 min read.

"Navigating the challenges and asserting individual needs within the hospice system."

Hospice care, envisioned by Dame Cicely Saunders, prioritizes enhancing the quality of life for individuals facing terminal illnesses. While the philosophy emphasizes comfort and holistic support, the standardization within hospice systems can sometimes clash with individual needs and preferences. This article explores how patients and their families can navigate these challenges and advocate for a more personalized approach to end-of-life care.

The core of hospice philosophy involves addressing total pain—encompassing physical, emotional, spiritual, and psychological suffering. Contemporary hospice organizations strive to meet these needs through interdisciplinary teams, focusing on maximizing quality of life over quantity. This often includes palliative care to manage pain and symptoms while discontinuing curative treatments. However, not all patients find this standardized approach perfectly aligned with their personal definitions of quality of life.

When patients' goals and experiences diverge from the conventional hospice narrative, it can lead to resistance. This resistance isn't necessarily opposition to hospice itself, but rather a call for individualized care that respects unique values and desires. Understanding these narratives of resistance is crucial for both patients and providers in achieving a more meaningful and fulfilling end-of-life experience.

Understanding Narratives of Resistance in Hospice Care

Symbolic image of patient-centered hospice care.

Narratives of resistance emerge when individuals challenge or reject aspects of the dominant hospice model. These narratives highlight the subjective nature of quality of life and the potential for standardization to undermine personalized care. Common themes include:

These resistance narratives often stem from a desire to maintain control, assert individuality, and ensure that personal values are honored during the end-of-life journey. Recognizing and addressing these narratives is essential for creating a care plan that truly aligns with the patient's needs and wishes.

Denying the Imminence of Death: Some patients and families struggle to accept a terminal prognosis, even after entering hospice care. They may view hospice as a temporary respite, hoping to eventually resume curative treatments.
Requesting Curative Treatments: Challenging the hospice philosophy, some patients seek treatments typically defined as curative, such as chemotherapy, physical therapy, or even surgery. This stems from a desire to fight the illness and maintain hope for recovery, or improve quality of life with interventions that can be deemed medically necessary.
Refusing Organizational Constraints: Hospice organizations may have rules and procedures that patients find restrictive or impersonal. This could involve limitations on caregiver choice, restrictions on visit schedules, or dissatisfaction with the assigned home health aide.

Understanding why patients resist certain aspects of hospice care is key to providing truly patient-centered support. This involves open communication, active listening, and a willingness to adapt care plans to accommodate individual needs and preferences.

Empowering Patients and Families in Hospice Care

Ultimately, empowering patients and families to voice their needs and preferences is crucial for transforming hospice care into a truly patient-centered experience. By recognizing and respecting narratives of resistance, hospice providers can foster a more collaborative and personalized approach that honors the unique values and goals of each individual.

About this Article -

This article was crafted using a human-AI hybrid and collaborative approach. AI assisted our team with initial drafting, research insights, identifying key questions, and image generation. Our human editors guided topic selection, defined the angle, structured the content, ensured factual accuracy and relevance, refined the tone, and conducted thorough editing to deliver helpful, high-quality information.See our About page for more information.

This article is based on research published under:

DOI-LINK: 10.4081/qrmh.2017.6152, Alternate LINK

Title: Resisting The Hospice Narrative In Pursuit Of Quality Of Life

Subject: Electrical and Electronic Engineering

Journal: Qualitative Research in Medicine and Healthcare

Publisher: PAGEPress Publications

Authors: Jillian A. Tullis, Lori A. Roscoe, Patrick J. Dillon

Published: 2017-07-21

Everything You Need To Know

What is the core philosophy of hospice care, according to Dame Cicely Saunders?

The core philosophy of hospice care, as envisioned by Dame Cicely Saunders, prioritizes enhancing the quality of life for individuals facing terminal illnesses. This approach emphasizes comfort and holistic support, addressing physical, emotional, spiritual, and psychological suffering, ensuring a patient-centered experience.

What are some common "narratives of resistance" that patients and families might express within the hospice system?

Common "narratives of resistance" include denying the imminence of death, requesting curative treatments, and refusing organizational constraints. Patients and families may struggle with accepting a terminal prognosis, seek treatments like chemotherapy despite the hospice philosophy, or find restrictions within hospice organizations to be impersonal. These narratives reflect a desire to maintain control and ensure personal values are honored.

How does the hospice model attempt to address a patient's total pain?

Contemporary hospice organizations strive to meet patient needs through interdisciplinary teams, focusing on maximizing quality of life. This involves addressing total pain—encompassing physical, emotional, spiritual, and psychological suffering. Palliative care is often included to manage pain and symptoms while discontinuing curative treatments. This comprehensive approach is crucial to ensuring that all aspects of suffering are addressed for each individual.

Why is understanding "narratives of resistance" important in hospice care, and how can it improve the patient experience?

Understanding "narratives of resistance" is key to providing truly patient-centered support. These narratives highlight the subjective nature of quality of life and the potential for standardization to undermine personalized care. By recognizing and addressing these narratives, hospice providers can foster a more collaborative and personalized approach that honors the unique values and goals of each individual. This involves open communication, active listening, and a willingness to adapt care plans to accommodate individual needs and preferences, transforming hospice care into a truly patient-centered experience.

In what ways can patients and families actively advocate for a more personalized hospice experience?

Patients and families can advocate for a more personalized hospice experience by understanding and challenging conventional practices. This involves open communication with hospice providers, voicing their needs and preferences, and being prepared to address any "narratives of resistance" that arise. For example, if a patient wishes to pursue curative treatments, they should openly discuss this with the hospice team, and explore how those treatments might align with the overall goals of palliative care. Asserting individuality, maintaining control, and ensuring personal values are honored during the end-of-life journey are crucial for a more fulfilling experience.