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?
Year after year nurses rank as the most trusted profession. That is only one of the reasons why the John A. Hartford Foundation has given so much support to nursing over the years. Their role is endlessly complex because they attend to the needs of patients, families, the health care team, and the health care system. They care for patients of all ages, and in all settings—hospitals, primary care, community agencies, and in the home. In addition to providing care they are often patient advocates. They measure impacts on cost and quality, lead research, and change policy. They are leaders, and they save the lives of the young and old alike.
Cancer is a leading cause of death in the U.S. and around the world. Nearly two-thirds of those living with cancer are older adults. As policymakers look for ways to provide better care and greater value as a means to bend the cost curve, the nation’s leading health policy journal, Health Affairs, is featuring a themed issue on cancer.
Many aspects of cancer care relate to breakthroughs in science—earlier detection, new medication regimens, and evidence of comparative effectiveness. Yet one aspect of care for the seriously ill is not routine: inclusion of patients and their goals.
My uncle, an avid jogger, trained for years with the Road Runners in New York City. He preferred to jog in Manhattan’s Central Park. He knew families of squirrels there, feeding them walnuts when he stopped to rest. He said that one squirrel would come up to him and personally request a meal. He would share updates on the red-tailed hawk known as “Pale Male” that lived on the ledge of a high rise bordering the park. Running and Central Park were my uncle’s two great loves.
A man displays a DNR tattoo
Over the past few years my uncle’s cognition worsened. Slow progression at first was followed by bouts of sharp decline. Early on, my uncle shared his wish not to extend life when he no longer enjoyed quality of life. This informed perspective came from watching his own mother’s deterioration from Alzheimer’s disease. My uncle shared his wishes with the family. He designated a health care proxy to ensure that his wishes would be honored.