“For those of you who haven’t yet heard, I have recently been diagnosed with Stage IV inflammatory breast cancer. This rare form of breast cancer is known for its rapid spread. True to form, it has metastasized to my spine. This means my time is limited. As a nurse, I knew it from the moment I saw a reddened spot on my breast and recognized it for what it was.”
With this powerful opening, Amy Berman shares a deeply moving blog post at Health AGEnda that strips bare the shortcomings of a health care system focused exclusively on survival. Amy brings a unique perspective to the journey of a cancer patient as she is also a leading advocate in geriatric nursing. She is a senior Program Officer at the John A. Hartford Foundation, and was previously the director of the Hartford Institute for Geriatric Nursing at New York University College of Nursing.
Faced with a terminal illness, Amy met with the top physician in the field. To her dismay, he pushed for the most aggressive treatments and was dismissive of her desire to maximize the quality of what time she had left:
He was focused only on quantity and forgot about quality. The patient’s goals and desires, hopes and fears, were not part of the equation. He was practicing one-size-fits-all medicine that was not going to be right for me, even though scientific studies showed it was statistically more likely to lengthen life. His lack of concern for my focus on quality versus quantity of life reminded me of how so many older Americans are treated at the end of life, shuttled in and out of hospitals and hooked up to countless machines to keep them alive when all they want is to manage pain and symptoms and to spend their final days at home, with their loved ones.
The deeply insightful blog GeriPal accurately sums up Amy’s experience in a health care system “where there is only cursory attention paid to quality of life, and no real attempt to make decisions based on what is important to the patient.” GeriPal also asks us to heed Amy’s final call to action:
What about the millions of older Americans facing a terminal illness or chronic disease? How can they possibly stand up to the juggernaut of our health system and say, “No. I want care that focuses on my goals, care that is centered on me.” We need to make it easier for everyone to obtain care that fits their health care goals. How can we change the system and the measurement of quality to place the patient at the center? I call on everyone involved in health care practice and reform efforts to give serious thought about how we can reorient our health care system toward patient-centered care
Please read the Amy Berman’s full story here.