Many of us have dealt with issues of advanced illness care for a loved one. When I think back to my mother's last months, I remember a time of love and togetherness, and of regret.
As I wrote about a few years ago, I realized too late that I should have asked her more questions about how she wanted to be cared for in her final days. Those answers would've helped guide her final treatments; maybe we'd have skipped the chemotherapy and blood transfusions that sapped the quality of life from her dying days.
The lessons learned from that experience prompted my involvement in the Coalition to Transform Advanced Care (C-TAC). I am proud to have been involved with C-TAC from its inception and proud to serve on the board of directors for this amazing organization. I look forward to speaking this week at the third annual National Summit on Advanced Illness Care in Washington, D.C. This year's theme: Building Bridges to Success.
While talking about end-of-life issues may not be pleasant, doing so is a must -- when you still can. For further insight on this subject, it's my pleasure to turn this conversation over to Bill Novelli, the co-chair of C-TAC and co-author of "A Roadmap for Success: Transforming Advanced Illness Care in America." Novelli was CEO of AARP from 2001-09, and is now a professor in the McDonough School of Business at Georgetown University.
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Nearly everyone has a story about struggling through the stressful maze of hospital and medical decisions when a loved one is seriously ill.
U.S. Sen. Johnny Isakson (R-Georgia) talks about being the "son of a mother and father who suffered from two ... terrible diseases ... cancer and Alzheimer's. Having not discussed the 'what-ifs' when my mom was of sound mind and body, we were guessing in trying to figure out the right thing to do."
And a friend told me about the long list of medical specialists she and her partner dealt with as he faced cancer. She thought maybe the internal medicine MDs would coordinate all the players, "but even they were focused on their individual contributions."
This is a challenge nearly every family confronts. Over the next two decades, the number of people over 65 will nearly double, to more than 72 million, or one in five Americans. Most people with advanced illness are in this age group. If we don't make things better, they will be at higher risk for unnecessary hospitalizations, unwanted treatment, adverse drug reactions and conflicting medical advice, with resulting higher cost-of-care to families and the nation.
Physicians and other clinicians are part of the problem, and they know it. Dr. Atul Gawande, in his best-selling book, "Being Mortal," wrote: "Give us a disease and we can do something about it ... but give us an elderly woman at risk of losing the life she enjoys ... and we hardly know what to do, and often only make matters worse."
The other half of the problem is us. As patients, relatives and caregivers, we present huge difficulties in getting advanced illness care right.
We often don't plan ahead, don't prepare for the issues of serious illness, don't understand our choices and, as with Sen. Isakson's story, don't ask our elders about their preferences until it's too late.
Fortunately, there is growing momentum for improvement in this critical area, on both sides of the issue -- the public and health professionals. As the Baby Boomer generation ages (the oldest Boomers turned 70 this year) they are a force for change, as they have been throughout their lives. They've experienced their parents' difficulties with serious illness, and I doubt they will tolerate the same broken system for themselves.
In addition, there is more and better media attention to these issues. A number of important books, including Dr. Gawande's and "When Breath Becomes Air," by Dr. Paul Kalanithi, are making a difference. Recently Medicare announced that it will pay for physicians to hold advance planning discussions with their patients. Palliative care (sometimes called "comfort care") is expanding, and other good things are afoot.
The Coalition to Transform Advanced Care (C-TAC), a national nonprofit organization which I co-chair, is focused on "shared and informed decision-making." This means helping patients and families to better understand their prognosis and treatment options and their ability to influence care choices. And on the clinician side, it means improving communication skills and better aligning treatment with patient preferences and values.
Recently we began a long-term partnership with Respecting Choices, part of Gundersen Health System in Wisconsin, the gold standard for person- and family-centered shared decision making. C-TAC's role is to help expand Respecting Choices so that virtually every family in America can participate, and it becomes part of routine care.
But you don't need to wait for us to come to your community. Start the discussions now with your elderly family members and their doctors. Don't wait for a crisis. This can become part of your family's routine care. The conversations should be repeated over time, because preferences may change as people age. The result will be better care for your loved ones and peace of mind for all of us.
