End-of-life care is often inadequate for people with disabilities. These individuals frequently spend excessive amounts of time in the hospital, with death occurring as a routine outcome. For those nearing the end of life, it is essential to differentiate between palliative care and end-of-life care, which are distinct from long-term care needs. While having an Advanced Care Directive (ACD) is necessary, it should not be the primary focus for end-of-life situations; a living care directive is more appropriate in these cases.
Palliative care can be long-term for individuals with life-limiting conditions, but it should not be confused with disability. Rather than solely addressing life-limiting conditions, palliative care focuses on maintenance, comfort, and support. It is crucial to clarify that palliative care serves individuals with disabilities who are at the end of their lives—not merely because they have a disability.
Death is a natural part of life and should be approached with compassion, respecting the individual’s values, beliefs, cultural background, and personal wishes. These wishes should significantly shape the care pathway, emphasising love, grace, and dignity.
When appropriate, families and friends are encouraged to participate in the process and receive the necessary support. Our environment is open and welcoming, where we celebrate the individual’s life and manage a care pathway uniquely tailored to them.
