It’s not what you look at that matters, it’s what you see. ~ Henry David Thoreau.
As you’ve heard me state many times before, one of the most important roles that a family caregiver plays is that of an advocate. Advocacy came in full force this week when we had to eliminate our choice for Hospice and seek other assistance for our current health care journey.
When we established services with Hospice, I had anticipated a fluid relationship that would be built on clear and consistent communication. That has been far from our experience: I would wager that many of you are shocked by this revelation! From the start of our relationship with Hospice, I have coined Hospice as our ‘friends.’ It saddens me that our ‘friends’ were such a disappointment.
It’s difficult to put my finger on how this ‘friendship’ went sour, yet from the onset of a bumpy admission process, to the latest problem with a medication order, it became quite clear to me that ‘our friends’ do not seem to be able to communicate in a timely manner with their clients, nor work within a team of health care providers. Cancer< is difficult enough, yet when “TLO” indicated that ‘our friends’ had become an “irritant,” I knew it was time to step in and eliminate them as a part of our care team.
I’m confident that any family caregiver and/or advocate would agree that what is most important for any health care team, is to work in unison, with one taking the lead role. In the almost four weeks since we enlisted our ‘friends’ to be part of our team, their failure to communicate with other health care professionals on our team was of great concern to me. Over the past two years since TLO was originally diagnosed with esophageal cancer, we have had tremendous support from his primary care physician, Dr. Milica Starcevic, his oncologist, Dr. Luis Barraras and his cardiologist, Dr. Harold Altschuler. The support we have had from these fine physicians has been based on clear and concise communication. They share in the care plan for TLO and work happily within a team. A major player in his care, our ‘friends’ at Hospice severely dropped the ball!
When we invited our ‘new friends’ into our home, we were thankful because we both knew that we could not do this alone. We both felt that adding them to our team would be of benefit, because when we looked at what our new ‘friends’ could offer us, we were impressed. But what really mattered was what we saw from our ‘friends’ that shaped our impression.
I will continue to be a big supporter of Hospice because I believe in the mission of Hospice. But just like in any business, not all service providers are alike. I do not hold any animosity toward our former ‘friends’, but I do hope that they have learned something from our experience: I know that I have! I think Henry David Thoreau said it correctly: It’s not what you look at that matters, it’s what you see.
You see…We Might Have Cancer, But Cancer Does Not Have Us!
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