Dear Barbara, 

What suggestions do you have in overcoming the changes we see in hospice and healthcare today? It doesn't look like it did 20 years ago. How do we maintain balance while keeping patients centered? 

Hospice originated outside of the medical model. It met needs the medical establishment did not. Gradually, ever so slowly, hospice agencies have been absorbed into that medical model and the original concept has morphed into a business. With any business, money becomes an important factor.

With hospice outside of the medical model, in the hands of not-for-profits, it struggled to keep its doors open but had the time to devote to its patients and families. 

Is there a workable medium? I’m not sure. End of life doulas are now working outside of the medical model, providing care that hospice is challenged in providing. However, EOL doulas are struggling with reimbursement issues just like hospices did in the beginning.

I’m wondering if these two groups of end of life workers could come together and meet each other's needs. For hospice, increased time spent with patients and families; for EOL doulas, reimbursement.

In the ideal picture, the goal is the patient’s death. Everything that is done before the death is preparation for the actual moment death occurs. Everything after the death gradually eases the relationship between the family and hospice. 

Yet in today’s hospice, most family members are alone when their special person dies. They then call the hospice to do a pronouncement visit, which tends to be short and without a lot of support and counseling given.

What if hospices used EOL doulas for the actively dying visit? The doula would be with the family and guide them through the moment of death, making the pronouncement call and staying until the body is gone. The family would not be alone, would be supported and guided in having a sacred experience which becomes a sacred memory they will carry with them forever. By the way, being with the patient and family at the moment of death was the original goal of hospice services.

You might ask, “how is this paid for when a visit could, and will likely be hours long?” Have the doulas work in a salaried position rather than hourly as most hospice employees work. Overtime does not become an issue. There are obviously details to be worked out, but I’m giving something to think about. I’m suggesting a more comprehensive way to care for the dying.

I know some hospices have Eleventh Hour volunteers. I applaud the creative use of volunteers BUT REALLY why is the most important moment in end of life work given to volunteers? 

Something More… about Can We Revive the Essence of Hospice?

If you are caring for a person who is facing end of life, I want to suggest you get support from By Your Side; A Guide for Caring for the Dying At Home. Taking care of someone as the end of their life approaches is not the same as taking care of someone who is going to get better. 

This specific knowledge and guidance won’t take away the sadness you carry, but it will give you the confidence to know that you are providing the best care possible for your special person.