Published on: December 3, 2024

Dr. Sharada Devi V writes:

Palliative care specialists play an important role in giving comfort, dignity, and support at some of life’s toughest situations. This work provides an opportunity to address ableism, a type of discrimination that marginalises people with disabilities, banning them from accessing the care and respect they need.

Ableism is prevalent, frequently subtle, and occasionally inadvertent. However, its influence is significant, especially for people in palliative care settings, where dignity, autonomy, and comfort should always be prioritised. This article attempts to increase awareness regarding ableism in palliative care and provide practical ways for combating it.

What Is Ableism?

Ableism is the belief that people with disabilities are inferior to those who are non-disabled. This mindset manifests in various ways, from societal structures to language, attitudes, and behaviours that devalue disabled individuals. Ableism can be explicit—when derogatory language is used—or implicit, such as when a caregiver assumes that a disabled patient is less deserving of quality care or a good quality of life.

In palliative care, ableism can appear in many forms. It can show up in the way patients are spoken to, how their needs are overlooked, or assumptions made about their capabilities. Whether intentional or not, ableism undermines the dignity of those with disabilities and restricts their ability to live with agency and comfort, even in the final stages of life.

The Impact of Ableism in Palliative Care

Ableism can have profound emotional and physical effects on disabled patients in palliative care. When care is shaped by ableist assumptions, these individuals may feel invisible, neglected, or regarded as a burden. Such experiences can undermine their mental health and restrict their access to adequate pain relief, participation in decision-making, and the overall quality of care they receive.

Patients with disabilities frequently encounter additional obstacles in accessing palliative care tailored to their unique needs, whether these involve physical accessibility, effective communication, or specialised equipment. By failing to address these requirements, palliative care professionals may unintentionally perpetuate the very inequalities they aim to overcome.

Combating Ableism: Practical Steps for Palliative Care Workers

• Acknowledge and Reflect on Personal Biases

Everyone possesses biases, whether consciously or unconsciously. It is crucial to examine personal beliefs and assumptions about disability. Are preconceived notions being formed about a patient’s quality of life or care preferences purely based on their disability? Reflecting on such biases allows care workers to minimise their impact and deliver more equitable and compassionate care.

• Ensure Accessibility in Care

All patients, regardless of ability, have the right to high-quality care. This necessitates ensuring that palliative care services are fully accessible to individuals with diverse disabilities. Measures might include providing wheelchair-accessible spaces, adapted communication tools such as sign language interpreters and Braille materials, and addressing any other physical or communicative barriers that hinder access to care.

• Engage Patients in Their Care Decisions

Disabled individuals are best placed to understand their own needs and preferences. Avoid making assumptions about what they might require or desire. Instead, involve them directly in discussions about their care, ensuring their choices are respected and their perspectives valued.

• Challenge Ableist Language and Attitudes

Language holds significant power. Care workers must be conscious of the words they use when interacting with patients and colleagues, avoiding language that dehumanises or undervalues disabled individuals. Promoting inclusivity and empathy involves actively challenging ableist attitudes and fostering respectful communication both within the care team and with patients.

• Embrace an Intersectional Approach

Disability intersects with factors such as race, gender, age, and socioeconomic status, all of which shape an individual’s experience. Recognising and addressing these intersecting identities is essential to delivering holistic and inclusive care. Tailoring services to accommodate the full spectrum of a patient’s identity ensures their needs and experiences are adequately met.

Why Addressing Ableism Matters

Addressing ableism in palliative care goes beyond promoting fairness—it is fundamentally about safeguarding the inherent dignity of every individual. When disabled patients are treated with respect, their autonomy is honoured, and their specific needs are met, enabling them to enjoy a better quality of life, even in their final days.

Moreover, tackling ableism in palliative care serves as a powerful example for the wider healthcare system and society. By championing the rights of disabled individuals, care workers contribute to fostering a more inclusive and equitable environment where disability is embraced as a natural aspect of the human condition, rather than something to be stigmatised or concealed.

Ableism continues to pose a substantial challenge in palliative care, but it is one that can be effectively addressed. By reflecting on biases, ensuring equitable access to care, empowering patients, and adopting inclusive practices, palliative care professionals can foster an environment where every patient—irrespective of their abilities—receives compassionate and dignified care.

Addressing ableism not only improves individual lives but also drives a wider cultural shift towards a more inclusive and empathetic healthcare system. Together, these efforts ensure that palliative care is accessible to all, upholding comfort and dignity for every patient.

(Dr. Sharada Devi is Assistant Professor of Department of English at University College, Thiruvananthapuram.)