Frontline Initiative Aging

Whether you agree with Emily Dickinson or not, one thing is for sure: ideas about death and dying are different for everyone including people with intellectual disabilities. This transition, perhaps more than any other, has a profound impact on their lives. Direct Support Professionals (DSPs) have the opportunity to make a meaningful difference during the final days of people they support.

With the aging of our population we can anticipate that people with intellectual disabilities will experience the death and dying of a loved one approximately 12 times during their life. This includes the death of parents, siblings, relatives, friends, staff, teachers, colleagues on the job, and pets. Death and dying can be a difficult subject to discuss, and is often avoided or underplayed. However, we have come to realize the crucial role DSPs play in providing the people they support the opportunity for self-determination at the end of their lives or the lives of their loved ones.

Before becoming an “end of life” guide, DSPs must first take the time to examine their own feelings, fears, and concerns about death and dying. DSPs must also understand and appreciate the different ways other people process the concept of death based on collective experiences, culture, religion, beliefs, faith, and fears. DSPs should address their own status and comfort level before engaging in “end of life” discussions with the people they support. This can be done in a variety of ways, but it is fundamental in providing effective and responsible supports.

Discussions about death and dying should be a process, not an event, and should be integrated into everyday life. Responding to a depicted death in the movies or on TV, the death of a pet or the news of the death of a celebrity are excellent opportunities to find out a person’s comfort level in discussing death and its meaning, including the person’s belief system, preferences, and fears. Hopefully, these discussions will lead to an agreed-upon set of plans, hopes, and preferences that will honor the realistic wishes of the individual.

When discussing preferences for their own last acts prior to their death, adhere to the following points —

• Always be truthful (i.e. say “No one really knows that, it is a mystery for everyone” when asked “afterlife” questions).
• Never promise anything that you cannot realistically deliver (“You can be buried at sea but you can’t be shot into space.”).
• Be certain that expressed preferences are consistent over time.
• Be prepared to share your own uncertainties, questions, fears, and expectations.
• Be respectful of diverse religious or cultural beliefs, practices, and rituals.

DSPs should also become familiar with the basics of the following concerns —

• Organ donation eligibility.
• Rituals: open vs. closed casket, music, eulogies, flowers, funeral types (burial, cremation, mausoleum), burial clothing and artifacts, headstones and inscriptions, who to invite.
• Hospice care: in hospice vs. hospice care at home.
• Do Not Resuscitate status: advance directives, legal forms.
• Will: gifting personal treasures to friends, family, etc.
• Memorializing the “life lived”: how someone would like to be remembered, favorite photos.

While this is far from an exhaustive guide to death, dying, mourning, and grieving, it should serve as a starting point for DSPs who have the empathy, compassion, and creativity to assist the person they support with this last frontier of support for people with developmental disabilities.