I recently flew to Washington, D.C. to give a presentation at a Croatian Embassy event organized by the Croatian Association for Patient’s Rights. Their president, Jasna, invited me to speak about my experience over the past year concerning patients’ rights in the U.S. – through my dad’s and my husband’s battle with cancer (my dad was treated in Croatia and Matthew in the U.S.).
Because Croatia belongs to the European Union, its medical field is required to address patients’ rights and, more importantly, educate doctors and nurses about it.
There were three other female presenters, all three medical specialists, who gave very informative and educational talks on the subject. My job was to give a personal account on different aspects of patients’ rights: ranging from access to information, to decisions to be made about treatment, to the right to receive medical care, and to privacy and the end- of-life decision. (This is exactly what I do – as an artist, I take the scientific and practical and put it into music or experiential form – which engages people on an emotional level and allows them to more deeply absorb the information.)
I had a lot of good experiences to share, but also some horrific ones – almost all of which involved the business side of profit-driven health insurances.
In the end, I said that what made all the difference,
and which could not be written in as a regulation,
was the humanity of how my husband was treated.
This included the kind words of encouragement that his doctors had for him (even when they couldn’t promise success), the touch on the shoulder or squeeze of his arm, the tears in his oncologist’s eyes when she said the trial did not work, or when she told our kids that their dad was truly a hero… they dubbed him “Captain America.”
Systems are always going to be flawed and incomplete. but loving and caring for another human being without judgment or discrimination However, this cannot be written into a legal document. Love, compassion, prayers and support of those who loved him was what brought dignity to my husband and healing to our sons and me, even when medicine failed.
As I said this during my presentation, I looked at the women scientists.
All three nodded their heads in confirmation.
At the end of the event, I sang for them. I asked if they were going to add a right to music to patient’s rights, half-jokingly. They agreed that music played a huge part in patients’ treatments.
Ask yourself, “How can I ‘affect the system’ by extending love, kindness, or emotional or physical support to someone?”
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