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Vol. LXIV, No. 19
September 14, 2012
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Elects ‘Niagara Falls’ Trajectory
Berman Shows How To Bridge Gap to Patient-Centered Care

Amy Berman
A lot has changed since Amy Berman saw a strange-looking red bump on her breast 21 months ago.

She has been diagnosed with stage IV inflammatory breast cancer, has opted for palliative care and—knowing that only 11 percent of people with her diagnosis live beyond 5 years—prepared herself and her family.

Here is one thing that has not changed: Berman feels fine. She has remained well enough to climb the Great Wall of China and, although her cancer had already spread to her spine when she was diagnosed, it has not continued to spread.

Berman spoke at NIH recently as part of the Medicine: Mind the Gap series presented by the Office of Disease Prevention, the Office of Research on Women’s Health and NCCAM. She is a nurse and senior program officer at the John A. Hartford Foundation, where she is part of the effort to develop cost-effective models of care that improve health outcomes for older adults. In her talk “Cancer Care: The Patient’s Role, Palliative Care, and Implications for Health Policy,” she described how her experiences can be useful to health care providers, patients and policy makers.

Mind the Gap explores issues at the intersection of research, evidence and clinical practice, especially in areas in which conventional wisdom may be misleading. Berman challenged the conventional wisdom that aggressive treatments are the best for extending life. She chose palliative care for its ability to maintain her quality of life, but palliative care can extend life, as well, she said. Since her diagnosis, Berman’s treatment has consisted of a daily pill and a monthly infusion. It is not the right choice for every situation, but it was right for her, she said.

Berman described her experiences vividly and with good humor. “I want good quality of life for as long as possible and bad quality of life for as short as possible,” she said. “I call it the Niagara Falls trajectory: good, good, good, good—drop off the cliff.”

Health care providers rarely ask patients about their treatment goals, but they should, Berman said. She chose her treatment after reviewing the medical literature and consulting with her oncologist, who asked what she hoped to gain from treatment.

Amy Berman

Berman described her experiences vividly and with good humor. “I want good quality of life for as long as possible and bad quality of life for as short as possible,” she said. “I call it the Niagara Falls trajectory: good, good, good, good—drop off the cliff.”

Photos: Bill Branson

But a visit with a specialist in inflammatory breast cancer reminded her that many providers are not patient-centered. Without asking what Berman wanted, the specialist announced she should have chemotherapy, a mastectomy, radiation and more chemotherapy. Yet the literature suggests that the treatment recommended by the specialist would not help a person with stage IV inflammatory breast cancer, Berman said. And she questioned the wisdom of a mastectomy when her cancer had already spread to her spine.

Her experience with the specialist is closer to the norm, Berman said. Physicians may not feel comfortable with the complex discussions required to help patients who are facing a terminal illness clarify their goals. But well-informed patients make better decisions, leading to better care at lower cost. As an example, Berman said that Massachusetts General Hospital provided a more realistic sense of end-of-life care choices by showing patients a video of the ICU. Most people who saw it chose to spend their final days at home.

It is important for providers to communicate clearly with people who are ill; this does not interfere with hope, Berman said. And providers should ask patients how much information they want. In some cases, patients may prefer not to hear bad news, although they may want it relayed to a family member.

Providers should also encourage end-of-life planning, including appointing a health care proxy and having ongoing conversations with their proxies. These conversations give the proxy a firm understanding of the patient’s wishes at each step of illness and ease the proxy’s burden of making end-of-life choices. Berman also said that patients need to update advance directives as their illness progresses.

Berman believes patients should consider hospice care for the final months, not just the final days. Hospice provides an important range of services, including spiritual counseling for the patient and family.

Dr. Paul Coates, then acting director of the Office of Disease Prevention, ended the 90-minute session by thanking Berman for sharing her personal story and insights into health care.

“You informed, you educated, you challenged and you touched our hearts,” he said.


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