On September 30, 2008, Liz Baxter testified before the Oregon Health Fund Board. The Archimedes Movement’s comments were delivered by David Pollack, representing our Community Leadership Council. That left Liz free to tell this story as a way of emphasizing that we need to include “care” in health care – even excellent medical treatment is not enough.
Here is an abridged text version of Liz’s testimony:
With the change in the weather the summer’s definitely over. It was a long and hard summer for me. My mom passed away in August after a two year fight with colon cancer. It’s actually been two years since she was diagnosed; her fight was probably much longer than that. My mom was a great teacher for me, my five siblings, her 19 grandchildren and 27 great-grandchildren. She asked that we not cry about her diagnosis – she felt she’d had a great life, filled with love and laughter. But there were moments that filled me with frustration, pain and heartache that had nothing to do with her illness and everything to do with our inability to focus on care rather than treatment.
At 86, she wanted to die at home and our whole family was part of making that happen for her. My dad will be 89 in December and the two of them had been part of a large health system in Southern California for close to 30 years, the same primary care provider for close to ten years. The system has electronic health records with online access so that my mom could check appointments, lab work and information from her home computer. About 25 years ago she had a section of her colon removed due to diverticulitis, and even though she saw her physician whenever he recommended (probably around every 90 days) the first time she had a colonoscopy was in the emergency room when she was diagnosed with her cancer two years ago. How was that possible?
My mom received the best treatment – for hypertension, for cataracts, for her cancer. Yet, the system never took notice that she did not have a standard screening for colon cancer. Her oncology clinic – which had a full-time social worker on staff – did not ever refer the clinic’s social worker to assess an 86-year-old patient with an 88 year-old caregiver in their home. The fact that my parents kept every appointment, sometimes going to the clinic or hospital daily, made the system blind to the toll that those visits were taking on . It wasn’t until late July that they were referred for services to support them in their home, and only one week before my mom’s death that she was referred to Hospice.
The first week of September my mom got a letter from her health plan – yes, three weeks after she passed away under their care. The letter shows how my mom is still teaching me after she has gone. Her health plan got a file update from Medicare indicating that my mom was deceased. The health plan then wrote to my mom letting her know it was a mistake and that she was indeed “alive and well!” (the exclamation point is theirs.) I understand that errors happen; but if you think that someone is alive after Medicare data tells you the person is deceased, a form letter is not the appropriate method of contact. It left my father wondering who was more confused – Medicare or his health plan. I want to reiterate that my mom received excellent medical treatment — what was missing was health care.
In order for us to have a health system that ‘takes care’ of us we need two things – the policy and structure that will describe what that system looks like, what it can achieve and how we will transition to that system, At the same time, we need an overwhelming public demand for change. We must have a movement, a groundswell of voices that grow louder and stronger each day. That’s what the Archimedes Movement is about for me.
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