Amy Berman, on a recent trip to Hawaii. “I have done so much more than survive. I have thrived.”
The end of October marked five years since I was diagnosed with stage IV inflammatory breast cancer, a life-limiting disease. A small fraction of people (11-20 percent) in my situation survive to five years.
Clearly, I have survived. But I have done so much more than survive. I have thrived. I still work and enjoy a great life. I feel good. And unlike most people with my medical condition, I’ve never been hospitalized—no surgery and none of the combination infusions. I take medication to hold back the cancer but, with my team, I choose treatments with the least burden and side effects. And this has helped me thrive!
This is the third in a series of six Health AGEnda posts on the 2014 Annual Report.
Editor’s Note: The John A. Hartford Foundation’s 2014 Annual Report features five profiles of Hartford Change AGEnts whose work is representative of the kinds of practice and policy change the initiative is making. Read Harnessing the Power of Hartford Change AGEnts for more on the Change AGEnts Initiative. In the coming weeks, the Health AGEnda blog will spotlight the stories and videos of the other Hartford Change AGEnts profiled in the Annual Report. Today, we meet Mercedes Bern-Klug, PhD, MSW, who received a Hartford Change AGEnts Action Award for an interdisciplinary approach to working with two Iowa nursing homes to ensure that older adults’ wishes regarding life-sustaining treatments are followed under the state’s IPOST law.
Making sure that the wishes of nursing home residents are respected regarding health decisions has been a focus of Dr. Mercedes Bern-Klug’s career, especially as it relates to end-of-life decisions.
This week we offer a poignant story of one physician’s struggle to understand what he could do to help his aging and ailing new patient. Written by Dr. Mitch Kaminski, and originally posted on Pulse, a leading narrative medicine website, this true tale makes the point that if we don’t understand a person’s own personal health goal, we are unlikely to achieve it.
We are unlikely to help them.
The John A. Hartford Foundation is deeply committed to aligning care by all health care providers to address the goals of older patients. As people age and become much more medically complex and frail, well-intended treatments may not help with pain or function. The treatment may create new problems and burdens.
Our health care system and policies reflect this short sightedness, as well. That’s why it’s been refreshing to see some provocative writing about these issues over the past few weeks that might help us all think and do more to live our final years in old age the way we would want.
Jessie Gruman, founding president of the Center for Advancing Health, died on July 14 after a fifth bout with cancer. Jessie was a hero to patients, families, and health care providers for her selfless work to help people better understand their role and responsibilities in supporting their own health.
Amy Berman’s daughter, Stephanie, with her greatgrandparents, Herb and Julia.
It tickles me to report that I live with incurable cancer and I am expecting. I am expecting that the cancer will take its toll, that I will need to make choices about my health and care, that I will need the support of my family, and that I will need resources.
Imagine if everyone understood that they are expecting. We should all plan for great beginnings and endings.
Communicating with persons and their families about serious illness and complex health care decisions is a skill that requires training and practice just like any other medical procedure, according to Diane Meier, director of theCenter to Advance Palliative Care. Dr. Meier offers health care professionals ten critical steps to follow when having difficult conversations, such as with someone whose scans have shown progression of an incurable cancer.
While physicians, nurses, and others specializing in palliative care — which adds an extra layer of support to provide relief from symptoms, pain, and stress associated with serious illness — can be expected to have mastery over this kind of communication, most health care providers don’t receive adequate training in this essential skill. Delivering “bad news” is something that all health professionals need to be ready to do, in a way that gives patients ownership and control over the exchange of information, focuses on listening to the patient more than talking, and allows people to be the “captain of their medical ship,” just as Dr. Meier describes.
There’s been a great deal of policy and public attention to hospice and hospice care recently, including the bankruptcy and closure of a large hospice in San Diego over inappropriately long stays and possible overcharging of the Medicare program. But I think this is the wrong story.
The effectiveness of hospice in meeting the needs of dying people and their loved ones is really challenged by stays that are far too short and a health care system that still does not support an orderly transition into the end of our lives.