I received phone messages very early on the morning of May 5, 2017. Urgent calls left in the middle of the night from a hospital in California, USA. My brother, classified with an intellectual disability, was in the hospital. Subsequent phone calls with both the doctor and the social worker told me the bad news. My brother, Mike, had metastatic liver cancer. With those few words, our journey into hospice had begun.
Mike was born in 1962. Back in the 1960s there wasn’t much that could be done for him. He was non-verbal and communication was a challenge. My parents tried local programs, but in the end, he was asked to leave the programs due to his behavior. My parents placed him in an institution with the hopes that he could be taught a few things, especially a little bit of sign language. He entered at the age of 8. He stayed at the institution until the state decided he should be in a community home. He was then placed in adult residential facilities for the remainder of his life.
At the time I received the phone call my parents had both passed away. My sister and I were co-conservators and provided oversight of his care. We would visit him every year and sign the administrative papers to ensure he lived a good life in the residential care home. And now…now we had to decide how to care for this last journey. A journey that we knew would be difficult.
The big issue was placement. Where could we place my brother live for the last weeks of his life? Could we find a hospice that could handle his behaviours? Would we have to place him in a skilled nursing facility where the staff could manage hospice care, but would not understand his behaviours? Within a week we found an adult residential home that had received a hospice waiver just a few days prior. The home had experience in caring for the intellectually disabled, which we felt was best for him. However, a hospice waiver means regular hospice training is not required. My brother was the FIRST hospice patient for this newly registered home and the staff had absolutely no experience with a dying resident.
In hospice I learned about pain management, medication management, and physical changes. I learned the staff knew nothing about the body’s preparation for death nor terminal agitation. I listened to the hospice nurse stress the need to get ahead of his pain. I learned the staff mixed up milligrams vs milliliters which resulted in giving my brother the incorrect medication doses. I remember standing there telling the hospice nurse to stop writing PRN (as needed) orders. Why? Because my brother was non-verbal and could not request extra pain medication. In addition, the lack of experience and training of the care home staff failed to recognize the need for supplemental medication. This led me to request a decrease in the medication intervals to ensure my brother had sufficient medication levels at all times. These are just a few examples of the difficulties we faced.
After he died, my sister and I thought that our experience should have gone better. We researched the internet to determine how other people managed the same situation. We couldn’t find anything within the United States. Regular hospice web sites and hospice books all said to follow the wishes of the individual who was dying. That is fine for you and for me, but what about those who have no voice and had never had a voice? More internet searches revealed tools/videos from other countries, specifically the UK and Australia, that had worked years on easing the passing for this vulnerable community. Because these were from overseas, these sites were not well known in the USA.
We wanted to bring awareness of these resources and to share our experience with others. In the end, we developed a web site to describe Mike’s journey. The web site contains:
- Our hospice experience for our intellectually disabled loved one
- Links and resources for
- Having an end of life discussion with an individual who has an intellectual disability
- Pain assessment tool for the non-verbal
- The Disability Distress Assessment Tool that identifies distress in a non-verbal individual
- A chart that links behaviors with medicine
- Reference/reading list to provide additional resources for hospice and grief
- A place for users to share their story and to help others feel less alone.
While the web site is targeted to those families where a member has an intellectual disability, it can be used for any family member who is non-verbal (e.g., end stage dementia).
We learned many things in Mike’s journey through hospice. We thought, as a family with strong medical background, that we would be prepared. But we were not prepared in so many ways. We want this website to help other families prepare for end of life and most importantly, to not feel so alone.
It is estimated that by 2030 the number of adults over 60 with an intellectual or developmental disability will be 1.2 million . I have come to believe that the USA healthcare system is not prepared for the special care that this population will require in hospice.
This website, lovingly called Mike’s Journey, was born out of a desire to help others with an intellectual disability who are facing hospice care. In sharing our experience, we hope to provide support and aid to other families and caregivers at residential facilities or at home as they confront a similar situation. The web site shares not only our journey, but also resources and tools that can be used for the end of life discussion and care.