“If we have these conversations, the person will die…
If we do not have these conversations, the person will still die.”
~ Ellen Cameron, Lower Cape Fear Hospice
End of Life Planning is a difficult topic for many people. Talking and planning about a time when you will be dying requires deep reflection and can be emotionally challenging. However difficult this may be, planning for the end of your life can help ensure that your wishes are known and honored. There are many options available for expressing your end of life plans. People who wish to accomplish their own end of life planning can do so by creating an advance directive or a living will.
People with an Intellectual Disability (ID) should be given the opportunity to talk about the end of their life and what choices they would make. This can sometimes be challenging because of the inability of others to fully realize what a person with ID may or may not understand or be able to express. The challenge to those who work in the field of ID is starting the process without preconceived thoughts of what can be accomplished. Regardless of roadblocks, attempting the process is a good start and many are surprised at the outcome.
It is of the utmost importance that everyone understands that no one can make an advance directive or living will for another person (not even their guardian, health care agent or health care representative). It is also important that people know that while it may not be possible for a person with ID to make their own advance directive or living will, there are many other ways to plan for the end of life.
The End of Life Work Group of Southeast PennsylvaniaA Work Group was formed in the Spring of 2012 to assist people with End of Life Planning. It consisted of representatives from various professions and venues – hospice coordinators, hospital social workers, nurses, residential provider agency representatives, supports coordinators, public health students, advocates, and administrative entity (county) representatives. Each member of the Work Group has had experience with end of life situations. Their experiences have provided education and information; however each experience was unique with interventions specific to that situation. It is clear that people are being educated about end of life through their involvement in end of life situations. What is lacking in our field of ID is pre-planning. There is a wealth of information and guidance available on this topic, both nationally and internationally. Members of the Work Group agreed that it would be beneficial to guide people to those resources and provide products from their meetings and work. It is hoped that these resources can make a difference in the life or death of someone with ID and those providing supports and services.
Resources and Guidance
Working with the Team
Please note that the use of the term “Mental Retardation” on any part of this website is done so only because of direct titles from the time period that the literature was written. The SE Pennsylvania End of Life Work Group uses and promotes the use of the term “Intellectual Disability” in all our work.