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End of life care for people with developmental disabilities

The concept of end of life care is a topic that warrants significant attention and sensitivity. And when the discussion involves individuals with developmental disabilities, the conversation becomes even more nuanced and complex.

Naturally, one’s own or a loved one’s death is nearly unfathomable. So while 92% of Americans acknowledge that discussing their end-of-life wishes is crucial, only 32% of the adult population has followed through with this task. For various reasons, it is likely that the percentage of adults with developmental disabilities who have engaged in these discussions is even lower than it is for the general population. Below are the essential considerations, challenges and approaches involved in providing dignified and compassionate end-of-life care for people with developmental disabilities in particular.

What are developmental disabilities?

While death is generally a taboo subject, health practitioners often struggle with how to bring it up when engaging people with disability. The general discomfort in trying to include them comes from the concern that the individual with a disability might not fully comprehend the discussion. This is because developmental disabilities cause impairment in cognitive, physical, communication and social skills.

These diverse groups of conditions often manifest early in life and can range from intellectual disabilities to autism spectrum disorders. Individuals with intellectual and developmental disabilities (IDD) often require tailored support throughout their lives to lead fulfilling and meaningful existences.

When it comes to end of life care for people with developmental disabilities, the principle of person-centered care takes center stage. Person-centered care recognizes the individual’s preferences, needs and desires as the foundation for all decisions. Each person’s journey is unique, and this approach helps ensure that their wishes are respected and honored during the final stages of life.

Even though planning for a loved one’s death can feel uncomfortable, it’s important to acknowledge that planning for the future, especially when individuals with disability are concerned, can be the key to greater happiness, stability and a sense that their wishes are truly understood and valued.

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