Improving End-Of-Life Care For Those With Intellectual Disabilities

Claire Lavin is a professor of psychology at the College of New Rochelle in Westchester County, New York.  A licensed clinical and school psychologist, she works with children and adults with disabilities in facilities and school districts in the greater New York City region. She has written articles and presented papers on older adults with disabilities.

What are some common misconceptions about persons with developmental disabilities?

A. We come to understand people by our experiences with them.  Without experience, stereotypes tend to lead us. But anyone who has spent time with persons with developmental disabilities comes to realize that the commonalities between people are greater than the differences. They have needs, hopes, and fears— just like the rest of us.

Ironically, I am finding that as “healthy” people age, we actually become more like those with developmental disabilities. Older people may face cognitive impairment, such as Alzheimer’s disease, or sensory impairment that affects communication and emotional responses; there may be cardiac problems and other health issues that are similar to those experienced by persons with developmental disabilities.  People with disabilities have typically been somewhat “devalued” in our society, and unfortunately that may often be the case with our senior population as well.

What stereotypes exist in connection with the areas of  dealing with loss and grief?

A. A common stereotype is that persons with developmental disabilities do not experience loss or react to grief. In reality, the reactions to pain and loss are very similar. However, persons with developmental disabilities may not communicate or express these reactions in the same ways, and that difference can lead to misunderstanding and even a lack of emotional support.  For instance, irritable, non-compliant behavior after a loss may be the way a person with communication impairments expresses their grief and need for emotional support.  I think all too often caregivers do not interpret these signals correctly and the griever is not supported.

What are some of the issues of grief and loss that may pose particular challenges for those with developmental disabilities?

A. A hallmark of developmental disability is a lack of understanding of abstract concepts.  So understandably, “big” concepts, like dying or loss, which can be difficult for anyone to grasp, can be additionally challenging.  One critical role that both families and disability caregivers  can play is to begin to prepare the person with the disability before illness or death is imminent. Use the changing of the seasons as a way to talk concretely about the cycles of nature and of life. The birth of a baby is a concrete example of the beginning of life, which helps express the concept of beginning and endings. A scene of death or a funeral in a movie or a television show can be used to start the conversation.

Do these suggestions apply primarily to adults with developmental disabilities, or do you suggest using them with children as well?

A. I believe that, like vaccinations, repeated exposure to these concepts is the “best medicine.” There is a strong tendency to overprotect those with developmental disabilities, and that is especially true with children. But the worst thing that can happen is for someone’s  first experience with death to be that of a parent. Giving children some experiences with death, whether through being included in a funeral ritual, discussions like the ones mentioned above, or participating in some form of memorialization, teaches them that yes, sad things happen and people die, but people cope and support is there.

What may be some specific areas of concern for  families and caregivers who are not comfortable exposing these children to discussions of grief and loss?

A. Again, one stereotype has been that persons with developmental disabilities do not actually experience loss, which we know is not the case, or that they just can’t understand the concept.  Many people with developmental disabilities will react very strongly to these situations, but those reactions can be unsettling, as they are often very blunt. One example was a young man who came to  a family member’s funeral and asked, in a loud voice, “Why is he in that box?” This is another example where preparation can be so critical—to talk through what the experience might be like, what they will see, etc.

Are there any additional concerns in helping adults with developmental disabilities deal with grief and loss?

A. The most common complaint that I hear from adults with developmental disabilities around this issue is that people have not taken the time to really listen to their expressions of grief.  Just like in any situation when a death occurs, there is an initial flurry of activity and attention—there are funerals, cards, family gatherings, but then “life goes on.” But of course, as is normal for anyone experiencing loss, the grief is still there. Unfortunately, persons with developmental disabilities may not have easy ways to express these emotions, so caregivers may not understand that behaviors  may in fact be expressions of loss.  If the person is not able to express him or herself verbally, it may be even more difficult to understand. It is critical that persons with developmental disabilities have support systems in place to help them cope with normal grief reactions, and that caregivers are aware of the loss and understand how to help. Hospices can be great resources for bereavement support and information.

As people with developmental disabilities live longer, what advice do you have for healthcare professionals who may have had limited experience in working with adults with developmental disabilities, especially when facing end-of-life situations?

A. One critical piece of advice is that healthcare professionals need to work hard to connect with the people  who have been providing care for the individual with a developmental disability. This may mean the family caregiver, or it may mean a professional caregiver–generally, persons with developmental disabilities have not lived independently, but have been in the care of someone else.  These caregivers have likely developed  ways to communicate and understand responses to emotional and physical pain.  Perhaps as importantly, they have developed methods of soothing the person they are caring for, which may often involve a tactile response.

Challenges certainly exist for the healthcare provider when caring for this population.  Professional caregivers who have been working with the individual may feel “territorial”, because their experiences and understanding of their clients has developed over time. Family caregivers may have developed a mistrust of the healthcare system over many years.

At the same time, misconceptions and barriers exist on the part of these caregivers as well. People with disability training have traditionally not been taught about death and dying, so while their experiences are a critical component of care, they may not be prepared to help their client face illness and loss. This is why strong partnerships between those who work in the developmental disability field and those who work in end-of-life care are so critical. Hospice personnel have been more open to these partnerships than other healthcare professionals, but there is still work to be done.

At the end of life, those commonalities we discussed come in to play. Most persons facing death want to be sure their wishes are respected, and that comfort and quality of life are the priority. What are some ways to ensure that these issues can be addressed for  adults with developmental disabilities?  

Again, the focus on concrete concepts and responses can be useful. So often, it is a matter of asking simple questions—who do you want to be with you? Do you want the lights on all the way or turned down some? Is there music that you like to hear? Are you more comfortable on your right side or your left? These questions, and honoring the responses, gives that person some power over what they can control within the situation. Healthcare professionals must be willing to listen to these answers and respond accordingly.  This is where open communication and partnership between long-time caregivers and end-of-life professionals will be critical. Measurements of “quality of life” can be difficult to make, but allowing the person with the disability to express what he or she wants can give a great deal of insight and bring a great level of comfort and quality.