Saturday, February 8, 2014

If I ran a hospice


Don't get me wrong. The Richard L. Owens Hospice Home is a lovely place, and only one of four hospice homes in the state of Illinois. Therefore, we are lucky to have this facility not only here in Peoria, but also within less than 10 minutes from most of my family's homes.

Here's a little background, courtesy of a June, 2013 article in Healthy Cells Magazine:

"The impetus of the home’s creation is rooted in the generosity and charitable spirit of Richard L. Owens and his wife, Hootie. Richard was a successful entrepreneur who was also an OSF lung cancer patient. He passed away peacefully with his family and friends in his Peoria residence with the help of OSF hospice care. Following Richard’s passing in 2003 and before her own death in 2010, Hootie continued the family tradition of giving, pledging $2 million to help build the OSF Richard L. Owens Hospice Home."

Fun fact: Back in the 80's, I was high school buddies with Rick and Dennis Owens, Richard and Hootie's sons. There were many a nights when we "partied" at their mom and dad's house when they were away. I find it ironic that years later, I am sitting in Richard's "home" once again, when he's not here. 

But back to hospice. Let's pretend there are no government and state rules and regulations and no Medicare red tape. Let's pretend we're not bound by laws that say what can and can't be done or allowed and that there are always exceptions and not all patients at this stage of their life are created the same. And let's pretend I have limitless amounts of money. That said, here's what I would do if I ran a hospice.

If I ran a hospice, the beds would be pimped out so they wouldn't look like hospital beds. They'd have headboards and canopies and bed skirts. The sheets would be flannel or 1000 thread count fine Egyptian cotton. The blankets would be as soft as a baby's bottom, not starchy and stiff like the ones you get on an airplane. The pillows would never need fluffing, would always be cool and would always smell fresh. The mattress would be one of those fancy, Sleep Number ones that would adjust to her comfort and support needs and wants. Oh, and the beds would be able to magically transform into chairs that could be wheeled out to a sunroom, or a porch, or an outside courtyard. If that's where she wanted to be.

And speaking of fresh, if I ran a hospice, it would smell like springtime. Not that canned smell you get in those air fresheners that give you a headache, but the real springtime. Like rain or lilacs or fresh cut grass. Maybe every room would have a customizable smell, like sawdust for a woodworker or the finest of food aromas for a chef.  

Not like this chair.
If I ran a hospice, the rooms would be bright and airy like they are, yet more comfortable. The chairs would be plush, with upholstered arms instead of hard, wooden ones. The backs would be high so my dad could rest his head back and snooze without doing that head bobbing thing. There would be footrests, or perhaps a coffee table to prop tired feet upon.

Not like this couch. Ouch.
If I ran a hospice, there would be a couch. Not a Styrofoam couch that converts to a table that converts to a recliner that converts to a bed that, according to my dad, is "just a little better than sleeping on the floor of the waiting room at the hospital." No, this would be a comfy couch, in a soft fabric that's soothing when you run your fingers over it. One that my dad or sister or brother could sink into if they wanted and take a nap under a blanket. One that would make us feel like we were visiting our mom in her own living room rather than the last room in which we may ever see her.

If I ran a hospice, there would be a smoothie machine with different flavors, available 24/7. That way, if she said she was hungry for one, we could get it for her right away, and not wait for the nurse to have the kitchen make one and by the time it comes, she's asleep or not hungry anymore.  There would be a multitude of yummy foods available in a softened form, like chocolate or cheesecake or cookie dough, just right for someone who has trouble swallowing or chewing.

If I ran a hospice, there would be a dial on the wall where you could choose a type of music to play in the room - from big band to showtunes to the classics. To me, the power of music is incredibly underutilized and underrated.  

OK, this might be a little much, but it's cool.
If I ran a hospice, the harsh, overhead lighting would be replaced by floor and table lamps and soft light. There would be more plants. And a fish tank in every room, soothing to watch during the day, casting just the perfect glow at night and just the right amount of white noise with its bubbling filter.

If I ran a hospice, I'd make sure she was was assigned a rotation of just a few nurses who would really get to know her and know our family. That way there wouldn't be the constant battery of questions every day that we and she have answered thousands of times before. There may still be the FLACC Scale and the Morley Makin Model, for I know there is an important place for both of these, but it wouldn't necessarily have to be applied to every patient. And certainly I would do my ultimate best to be respectful of the fact that the family - regardless of their depth and breadth of medical knowledge - does know their loved one better than I ever will and may in fact know more about her real "quality of life" wishes that I medically do. I would make sure every word spoken to her and every care given to her was done with the utmost of respect for her own dignity.

If I ran a hospice, there would be volunteers here who have been down this road. They would come in and offer to talk to my dad or me or my sister or brothers and help us through this roller coaster of emotions we go through on a daily basis. They would help us navigate the "what to expect" when we don't know what to expect. They would validate what we are feeling and help us manage those emotions. They would enlighten us as to how to help my mom. How to best take advantage of the time we have left with her. How to tactfully discuss how or what she is feeling and have responses to whatever she might say. They would be able to help the different members of my family who are in different phases of the grieving process. I wouldn't offer these services "after the fact" as bereavement services. To me, they are just as important - if not more important - now. 

If I ran a hospice, the windows would open, so she could feel the rain on her face for just a moment. Catch a snowflake on her tongue one last time. Feel the warm breeze send tingles all over her body. And most of all, so I could watch her close her eyes and raise her face to the shining sun. 

Again, this place is nice, and I'm thankful. It is their job to provide palliative care for those at their end stages of life. But if I could, I'd strive to treat each person as more of an individual and as special as that life itself. I'd make sure that person was given the quality of life they wished for and deserved (given my limitless means.) I would leave no wish ungranted, no want unmet, and no words left unspoken. If I ran a hospice.

1 comment:

  1. Again, beautifully written. The personal stories of your personal and painful journey would be a wonderful, comforting book for others facing that journey. That book could almost stand in stead for the volunteers you speak of in your wonderful place of care and compassion. Peace and strength to you as you continue the journey.

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