Best Practices for Providing High-Quality Palliative Care for People with Disabilities
Understanding Disability in the Context of Palliative Care
One in four people in the United States live with a disability, which may include physical, sensory, intellectual, developmental, or psychiatric conditions. The Americans with Disabilities Act (ADA) defines a person with a disability as someone who:
- Has a physical or mental impairment that substantially limits one or more major life activities, or
- Has a history or record of an impairment (such as cancer that is in remission), or
- Is regarded as having such an impairment by others even if the individual does not actually have a disability (such as a person who has scars from a severe burn that does not limit any major life activity).
While legal definitions (such as the ADA) are important for determining access to services and establishing civil rights, people with disabilities may self-identify in diverse and personal ways, as described below.
In palliative care, disability may be present prior to a serious illness diagnosis, arise concurrently with it, or result from the illness or its treatment. The timing, duration, and potential progression of the disability can influence how patients and caregivers understand its meaning. These factors may also shape whether individuals identify as disabled or feel connected to the broader disability community. Not everyone who qualifies as disabled by formal definitions uses the term “disability” to describe themselves.
Ableism in Health Care
Access Living, an advocacy organization based in Chicago, defines ableism as:
- "The discrimination of and social prejudice against people with disabilities based on the belief that typical abilities are superior.
- At its heart, ableism is rooted in the assumption that disabled people require ‘fixing’ and defines people by their disability.
- Like racism and sexism, ableism classifies entire groups of people as ‘less than,’ and includes harmful stereotypes, misconceptions, and generalizations of people with disabilities.”
As of 2023, the National Institutes of Health (NIH) formally designated people with disabilities as a population with health disparities, citing well-documented inequities in access to care, preventive services, and health outcomes. These disparities are compounded by inaccessible clinical environments, lack of representation, and failure to collect disability-specific data in health systems.
Disability is a form of human diversity—yet disabled people routinely face discrimination, stigma, and exclusion in health care. According to a 2021 Harvard research study, over 80% of physicians believed people with significant disabilities had a worse quality of life than nondisabled people, and only 40% felt confident in their ability to provide them with care. These biases are not harmless; they translate into poorer care and avoidable suffering. For palliative care clinicians—who often assess quality of life to guide treatment planning and shared decision-making—this bias can lead to skewed perceptions and even inappropriate care recommendations.
"Disability is a natural part of the human experience—and palliative care providers have a responsibility to make their care accessible, affirming, and person-centered."
The Role of Palliative Care Professionals
Palliative care is designed to meet the needs of all people living with serious illness—many of whom have a disability. Its focus on person-centered, holistic support makes it an ideal model for improving care for people with disabilities. But many physicians and other health professionals are not trained to recognize ableism, respond to access barriers, or tailor communication to patients with a wide range of cognitive, physical, or sensory needs.
To provide equitable, high-quality palliative care for people with disabilities, clinicians and organizations must move beyond good intentions to intentional clinical training and program/operational design.
Principles for Disability-Inclusive Palliative Care
Individual
- Use affirming language and respect individual preferences.
Let patients guide how they talk about disability—some prefer “person with a disability,” others “disabled person.” Public materials should use the term “disability” explicitly to normalize and destigmatize it. Avoid infantilizing or pitying language, particularly for people with intellectual or developmental disabilities. - Promote autonomy and self-expression.
People with disabilities are experts in their own lives. Ask open-ended questions about communication preferences and daily routines. Allow extra time for patients who need support with speech, processing, or mobility. Don’t touch assistive devices (like wheelchairs, canes, or guide dogs) without permission—they are part of the person’s body and identity. - Tailor your care plan to the patient.
Ableism assumes that disability is a flaw that must be fixed. Instead, palliative care teams should adapt their approach to fit the patient. Normalize asking about modifications, including disability in quality improvement initiatives, and train all staff on inclusive practices (during onboarding and annual refresher training). - See disability as a matter of equity, not exception.
Clinicians should approach care for people with disabilities with the same cultural humility, structural awareness, and respect for lived experiences that all equity-focused care requires. Disability should not be treated as a rare circumstance. It is a common life experience that intersects with every demographic group.
What Can Health Care System and Organizations do?
- Integrate disability status into electronic health records (EHRs).
Ensure disability is treated as a core demographic field within patient data systems, like race, ethnicity, and language. This enables providers to track disparities, tailor care plans, and improve accessibility across services. - Embed disability equity in the team’s health equity goals.
Include disability as a key priority in strategic plans and equity benchmarks. Monitor progress using measurable outcomes such as accessibility of services, patient satisfaction, and staff training completion. - Eliminate access barriers in clinical settings.
Consider whether exam tables are adjustable, scales are usable by people in wheelchairs, communication devices and interpreters are readily available, and materials are offered in plain language or alternative formats. Encourage staff to report any concerns to the appropriate office within your organization to ensure that disability modifications are easily accessible and well-advertised in clinical environments.
Palliative Care Teams
- Elevate disabled voices in leadership and advisory roles.
Ensure people with disabilities are meaningfully represented when you elicit patient and family feedback in QI and/or service design processes. - Foster team-based reflection on disability bias.
Normalize interdisciplinary conversations about ableism, both structural and interpersonal. Use real case examples, team huddles, and ethics rounds to surface bias and reflect on more inclusive practices. - Collaborate with disability-led organizations.
Investigate service providers in your area who may be of benefit to your patients with disabilities and make referrals when appropriate. - Work with the appropriate clinical teams to develop a comprehensive plan. To develop and carry out a treatment plan focused on the patient’s functional goals, palliative care clinicians should coordinate care with a wider range of specialists to meet the unique needs of the disabled patients. These may include physical medicine and rehabilitation doctors, physical and occupational therapists, speech-language pathologists, prosthetists, orthotists, mobility specialists for vision impairments, vocational rehab experts, and others.
- Ensure time and space for full assessments.
Standard care practices for palliative care clinicians include conducting a thorough functional assessment of their patients. This involves evaluating how a patient’s disability affects their ability to function both within and outside the home, tracking changes over time, and identifying barriers to participating in both essential and meaningful activities. Assessing the person’s social history may also provide insight into their support system and living environment, including any home modifications or assistive equipment in place.
Moving Forward
Disability-inclusive care is not a checklist—it is a mindset and a shared commitment. By building accessible environments, acknowledging bias, and honoring patient autonomy, palliative care providers can make meaningful improvements to care quality and advance equity.
Content Contributors/Acknowledgements:
Sarah Quinto, MA, CFRE
Senior Program Strategy Officer, Office of Philanthropy - Providence
Melissa Levin, MSW, LICSW
Senior Social Worker, Dana-Farber Cancer Institute
Programmatic Specialist, The Neuro-Inclusive Oncology Care and Empowerment Program
Rayna Ross, CHES
Health Equity Program Manager, CAPC
Brittany Chambers, MPH, CHES
Director of Health Equity, CAPC