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.
Patient engagement has been all the rage this week. Health Affairs held a DC briefing for their February issue focused on the topic, highlighting new evidence that patients engaged in their own health care have better health outcomes and can possibly cost the system less.
Our own Amy Berman, a crusader for patient engagement, was on the planning committee for the special issue funded by several of our favorite colleague foundations (she also gave a keynote speech to primary care providers in Massachusetts on this very topic a few days ago).
One of the Health Affairs articles features The Conversation Project, a grassroots national campaign to get more people actively engaged in end-of-life health care choices with their families and loved ones, before a crisis occurs. Health care systems and professionals also have to be “conversation ready.” They must be able and willing to meet the wishes of these activated patients.
When I was diagnosed with an aggressive form of cancer—one that has no cure—I debated whether to share this information publicly. Discussions about “death panels” were all the rage. It infuriated me to think that uninformed folks in the policy world would aim to limit open discussions with patients about their diagnosis, prognosis, and treatment options.
How could care be patient centered if patients and families were excluded?
Because I found an oncologist who was transparent and asked about my values, I was able to opt for care focused on feeling well for as long as possible, not the typical let’s-throw-everything-we-have-at-this approach. The latter would have made me feel terribly unwell without the likelihood of a real benefit later. I told family, colleagues at work, and my closest friends about my illness and decisions about treatment. I debated whether sharing my terminal diagnosis and decisions could help others. I wondered about the benefits and risks. Would I be marginalized professionally? Would I be attacked for my views and choices? Could going public cause pain to my family?
Thankfully, my health status has changed little since my last update. I have occasional pain in my right breast, where my cancer began, and a little pain in my lower back, where the cancer has spread. I go to bed a little earlier. Otherwise, I feel like the same person.
Because—thankfully—I’ve been feeling so good, I have been putting off writing a blog that seems to be all the rage with other writers discussing terminal illness: the (before I kick the) bucket list. I have given this some thought over the past two years. For about five minutes I considered a few options: a trip to Antarctica (way too expensive to justify); volunteering in Africa (not a great choice for an immunosuppressed person like me); climbing the Great Wall (done that three times!). Then I realized that it’s not about taking a trip or doing something thrill-seeking and new. I am already doing the things that matter most to me:; making family dinners, talking with my grown children, visiting with dear friends.
Last week New York Magazine published an agonizing first person cover story by Michael Wolff, “A Life Worth Ending,” about the terrible choices and harsh reality of illness at the end of his mother’s life. The summary slug for the piece says it all: “The era of medical miracles has created a new phase of aging, as far from living as it is from dying. A son’s plea to let his mother go.” Unfortunately, this story is one that all too many baby boomers are living as their parents move into their eighties and beyond. How can it be otherwise when almost 50% of Americans experience three or more years of profound disability before death?