Tuesday, January 26, 2010

hospice


(mijo: i think he missed me and wants to go with me next time)

The society which scorns excellence in plumbing because plumbing is a humble activity, and tolerates shoddiness in philosophy because philosophy is an exalted activity, will have neither good plumbing nor good philosophy. Neither its pipes nor its theories will hold water.

~ John W. Gardner ~
Secretary of Health, Education, and Welfare
under President Lyndon Johnson
(1912-2002)

In the last few months of Dad's life, he was on hospice care. I really believe in hospice. When it is done well, the patient and the family feel companioned and witnessed through the process of end of life.

When it is not done well, the family gets left out in the cold and feels like they have to protect the patient from hospice. Ours was the latter experience with my dad.

Fortunately (and unfortunately), I have had other experience with hospice--when my very dear friend died 20 years ago. The care givers were wonderful. Their communication and understanding kept us in the loop.

Today, while the memory of it all is still fresh in my mind, I wrote hospice a feedback letter. They will either accept it graciously or they won't. However, I can tell you that I wrote it graciously. If I don't tell them what it was like from my perspective, they will never know. And if I do tell them...it is up to them what they do with it.

Based on my first experience, I cannot recommend hospice highly enough. Based on this experience, I must say that if you are not satisfied not only with patient care but also with the communication with the family, fire their asses and hire a different hospice group.

In this situation, life truly is too short to put up with more grief from the care team on top of what you are already going through.

5 comments:

Carrie Wilson Link said...

I'm glad you wrote the letter. My dad died 13 years ago and Hospice was a godsend for us.

Joan said...

I am so glad that you wrote the letter, too. We have to defend ourselves sometimes in order to try to protect someone else from dealing with what we did. Thank you for letting me read the letter. You did write it most graciously. It was a letter in which you chewed butt and they will probably thank you for it!

Thank you for being our family's defender!!

Susan O'Neil said...

You did the right thing. You're responsible for your actions; they're responsible for theirs. We all have to speak our truths.

Deb Shucka said...

I'm so sorry you had that experience, and glad you let them know. My experience with hospice and my mom was one of the mostly profoundly amazing ones of my life.

Kathryn Grace said...

In spending your precious energy and time writing that letter, you did a kind and possibly experience-changing service for the many families that hospice continues to serve.

My family, too, had a difficult experience with hospice a few years ago, and when I attempted to discuss it with them, my mother chastised me. I stood my ground for this very reason, that other families should not have to experience what we had. Later Mom told me she was proud of me for speaking out.

Thank you, Wanda, for writing that letter. Though it may have felt good to get it off your chest, it was truly a selfless act.