Spirituality, Hospice and Persons with Disabilities

During this Lenten season we think a lot about the issue of life after death.  Thinking of the end of one’s life is oftentimes very difficult and is avoided by many. For those of us who may have the capacities to prepare, it is still difficult.

The Lenten/Easter season before us gives us hope and a reminder that life   spiritual life   goes on and that in the Christian world this extended life is one without pain, without prejudice, and without functional limitation.  Life after death is not to be feared, but rather is to be rejoiced in.

How do we help all of our family members, friends, or the people we serve become prepared for this journey?  How do we better prepare ourselves for the task of supporting others with disabilities to understand the ending stages of their   or our   lives?  If we, who are able to cognitively look at this issue, have difficulty, what about individuals who are less able to process issues of health deterioration, lack of family, or support systems?

I am reminded of these issues during this Lenten season because we have been receiving calls about hospice and how the principles of hospice can be applied to persons living in group homes.  Family members and concerned members of residential care staff have been frustrated by the lack of sensitivity to the spiritual needs of people with disabilities and by the lack of support for education on how hospice practices can better be made available to all, especially individuals living in community-based group homes.

Perhaps it is pretty understandable that these calls would come into our office during this time of the year.  Perhaps the aging of our developmentally-limited individuals living in group-home environments, as well as the aging of our overall population, is becoming more evident.  Whatever the reason, the need for education about the relationship between hospice principles and spirituality has surfaced and needs further exploration.

Some in the hospice field suggest that perhaps part of the lack of education and preparation is due to our own discomfort with our thoughts about our own mortality.  If this is true, we are certainly doing a disservice to our clients, their families and, really, to ourselves.  As difficult as this topic is, we have the responsibility to become better informed and to assist those we work or live with to have the most supportive living environment possible during this final stage of their lives.

Spirituality and a faith community have been parts of the lives of many individuals with disabilities.  As we grow older, or as we see more of our family, friends, or housemates pass on, we cannot help but think more about life’s end.  If we are lucky, we can see this passing as the next step of our spiritual journey.  Support, awareness, and caring will allow us to help those around us to be better prepared to move on in their life’s journey.  This, in turn, will help us move on in our own.