Empowered hospice patient surrounded by symbols of personal values, challenging conventional end-of-life care.

Redefining End-of-Life Care: How to Advocate for Your Quality of Life in Hospice

Avery Sinclair in Health & Wellness November 2025 • 5 min read.

"Challenging the Standard Hospice Narrative to Prioritize Individual Needs and Preferences"

Hospice care, rooted in the philosophy of Dame Cicely Saunders, aims to provide comfort and enhance the quality of life for individuals facing terminal illnesses. The core principle revolves around addressing 'total pain' – encompassing physical, emotional, spiritual, and psychological suffering. Modern hospice organizations strive to offer holistic care that considers the five dimensions of quality of life, delivered through an interdisciplinary team.

The conventional hospice approach emphasizes palliative care over curative treatments, focusing on pain and symptom management to improve overall well-being. This often involves accepting hospice eligibility requirements, such as discontinuing burdensome or ineffective curative treatments and seeking emotional closure. However, this standardized approach may not align with the personal values and definitions of quality of life for all patients.

When patients' personal definitions of quality of life diverge from the prevailing hospice narrative, challenges can arise. This article explores these instances, highlighting how patients and their families navigate hospice care while resisting the institutionalized prescription for enhancing quality of life at the end of life. By examining narratives of resistance, we aim to shed light on the subjective nature of quality of life and the pressures of standardization within the hospice industry.

When Personal Definitions of Quality of Life Clash with Hospice Standards

Empowered hospice patient surrounded by symbols of personal values, challenging conventional end-of-life care.

While hospice emphasizes individualized care, practical limitations and standardized protocols can sometimes undermine patients' personal quality-of-life goals. For instance, certain treatments deemed 'curative' may be restricted due to reimbursement rules, even if they contribute positively to a patient's well-being. The focus on business-hour care also often leaves a huge gap during evenings, nights, and weekends, neglecting the continuous needs of patients and their families. Navigating these challenges requires understanding the prevailing 'hospice narrative' and recognizing instances of resistance.

The standard hospice narrative often promotes a 'good death' as natural and pain-free, discouraging actions that might prolong the dying process. Quality of life is prioritized over quantity, with an emphasis on comfort care rather than curative treatments. While this approach works for many, it doesn't encompass the diverse values and preferences of all patients. Some may resist the idea of forgoing curative treatments or challenge organizational constraints to assert their autonomy.

Here are a few common ways patients resist the standard hospice narrative:

Denying the Imminence of Death: Some patients and families, even after admitting to hospice, may still resist the idea of a limited life expectancy, holding onto hope for recovery or a return to curative treatment.
Requesting Curative Treatments: Others may continue to seek treatments typically defined as curative, challenging the hospice philosophy of palliative care. This can include chemotherapy, physical therapy, or other interventions aimed at improving strength and prolonging life.
Refusing Organizational Constraints: Some patients resist the standardized protocols and procedures of hospice, seeking to maintain control over their care and make choices that align with their personal values.

Recognizing these narratives of resistance is vital for healthcare practitioners. It allows them to move beyond the 'Voice of Medicine,' which focuses on symptoms and treatment options, and listen to the 'Voice of the Lifeworld,' where patients express their concerns about how illness affects their lives and overall well-being. Attending to these narratives enables patients to feel heard and empowers them to have a greater say in their care.

Empowering Patients and Redefining Hospice Care

The experiences of patients who resist the standard hospice narrative offer valuable insights into the complexities of end-of-life care. By acknowledging and addressing these narratives, hospice providers can create a more patient-centered approach that respects individual values and promotes autonomy. This may involve rethinking traditional practices, engaging in open communication, and finding creative solutions that align with patients' unique needs and preferences. Ultimately, empowering patients to define their own quality of life ensures that hospice care truly honors their wishes and supports a meaningful end-of-life journey.

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.

Everything You Need To Know

What is 'total pain' in the context of hospice care, and why is it important?

'Total pain,' as conceptualized by Dame Cicely Saunders, goes beyond just physical discomfort. It encompasses the physical, emotional, spiritual, and psychological suffering that individuals experience when facing a terminal illness. Addressing total pain is crucial in hospice care because it acknowledges the multifaceted nature of suffering and emphasizes a holistic approach to care, aiming to enhance the overall quality of life for patients and their families. Modern hospice organizations strive to address these dimensions through an interdisciplinary team to create a more comfortable and meaningful end-of-life experience.

How does the standard 'hospice narrative' define a 'good death,' and what are its limitations?

The standard 'hospice narrative' often promotes a 'good death' as one that is natural, pain-free, and focused on comfort care rather than curative treatments. It prioritizes quality of life over quantity, discouraging interventions that might prolong the dying process. While this approach works for many, its limitation lies in its inability to encompass the diverse values and preferences of all patients. Some individuals may resist forgoing curative treatments or challenge organizational constraints to maintain control over their care, highlighting the subjective nature of quality of life.

In what ways might a patient's personal values and goals clash with the standard practices and expectations within hospice care?

A patient's personal values and goals can clash with standard hospice practices in several ways. For example, some patients may deny the imminence of death and hold onto hope for recovery, even after admitting to hospice. Others may continue to seek curative treatments like chemotherapy or physical therapy, challenging the hospice philosophy of palliative care. Additionally, some patients may resist the standardized protocols and procedures of hospice, seeking to maintain control over their care and make choices that align with their personal values, even if those choices deviate from the conventional 'hospice narrative'.

What is the difference between the 'Voice of Medicine' and the 'Voice of the Lifeworld,' and why is it important for healthcare practitioners to understand both in hospice care?

The 'Voice of Medicine' focuses primarily on symptoms, diagnoses, and treatment options, representing the clinical perspective. In contrast, the 'Voice of the Lifeworld' reflects the patient's lived experience of illness, encompassing their concerns about how the illness affects their daily life, relationships, and overall well-being. It is crucial for healthcare practitioners to understand both perspectives in hospice care because attending to the 'Voice of the Lifeworld' enables patients to feel heard and empowered. This involves healthcare practitioners moving beyond simply addressing symptoms to understanding and validating the patient's subjective experience.

What are the implications of patients 'resisting' the standard hospice narrative, and how can hospice providers better support individualized end-of-life care?

When patients 'resist' the standard hospice narrative, it highlights the subjective nature of quality of life and the need for a more patient-centered approach to end-of-life care. This resistance underscores that the standardized protocols and expectations of hospice may not align with the unique values and preferences of all individuals. To better support individualized care, hospice providers can rethink traditional practices, engage in open communication with patients and families, and find creative solutions that accommodate diverse needs and preferences. This ensures that hospice care truly honors patients' wishes and supports a meaningful end-of-life journey. Failing to recognize instances of resistance can lead to a feeling of the patient not being heard and can cause emotional distress.