Captain Ron’s VIEW FROM THE BRIDGE

February 2009

A number of people gathered ‘on the bridge’ of this vessel called Lower Valley Hospice, where I serve as ‘Captain.’  Through that marvel called the internet we were able to watch live as Chief Justice Roberts swore in Barak Obama as the 44th President of the United States.  Most of the speeches connected with the event, and even the prayer by Saddleback’s Pastor Rick Warren, spoke of how this event signaled a new era of ACCESS.  Kids born in poverty now had access to the highest office in the land, regardless of race, creed or color.  The new ‘leader of the free world’ promised that ordinary citizens would again have access to a government that had become captive to lobbyists and those with money.  Everybody would now gain access to quality medical care.

The reality is that access and money have always gone together.  When access has been given to those without the resources to buy their way in it is only as a result of a grand effort by many over years of struggling.  Those of us who do not have physical disabilities sometimes forget how essential handicap access is for those with disabilities.  Before the Americans with Disability Act (ADA) was passed by Congress in July, 1992.  Business were not in favor of it; modifying facilities or building new ones cost money.  Some said it would break small businesses when the ADA was extended in 1994 to apply to businesses employing as few as 15 employees.  There was testimony on both sides of the issue.  What finally came through was the sense that those whose daily lives include physical challenges just to get from one place to another should not be hindered from participating as fully as possible in life.

Through our Pediatric Palliative Care program we serve kids who will never know what it is to do ordinary kid things, like ride a bike, go swimming with a friend, ride a school bus, go to the Prom, walk on Graduation Night to receive a diploma.   All of these kids have a life-limiting condition or disease.  The Federal powers that be have determined that they should have access to either curative medical care or palliative (i.e. comfort) medical care, just as it is for adults who choose Hospice.  When an adult chooses Hospice service, he or she recognizes that curative treatments, such as surgeries or transfusions or chemotherapy, are no longer changing the outcome.  The disease is at its ‘end-stage.’  The hope shifts to being comfortable, surrounded by family and the familiar atmosphere of one’s own home.

As a parent I cannot imagine how hard it is for other parents to reach the point where they accept that death is inevitable.  Most cannot make the mental, emotional, spiritual shift from the hope of a cure to accepting comfort care alone.  Fortunately, some states such as Washington recognize the need for children from birth to age 20 to have both ongoing access to curative treatment and palliative care.  Though the funding does not cover the actual cost, it is enough to make it so that generous donors can provide the difference to keep this essential service going.

We are the only rural licensed service in the State offering kids and their families the comfort measures while they still pursue whatever new possibilities Children’s Hospital can offer.  We work hand-in-hand with Children’s Hospital to ensure that kids and their families can spend as much time as possible in their own homes, rather than living out of suitcases.  Trips over Snoqualmie Pass are minimized as parents learn to be partners in taking care of their children with life-limiting conditions.  For all of you who help us to keep this vital part of Lower Valley Hospice going, thank you very much.  For all of us who take life, health and access to facilities and services for granted it is easy to forget how hard it is whose burdens are unduly heavy.  Sharing a small portion of the burden may help make it a little more bearable for them.

Rev. Ron Jetter, Executive Director
Lower Valley Hospice and Palliative Care

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