Those of you who have read my previous blogs know that I was diagnosed with Stage IV inflammatory breast cancer in October 2010. You also know that I chose to forego aggressive treatment in favor of palliative care.
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.
Yet, there is one thing—just one—I am impatient to see before I die: better health care. So I’ve kicked the personal bucket list to the curb and come up with a health care bucket list instead, one with a particular focus on issues that affect older adults and those with advanced illness. So without further ado, here are my top five reforms for our health care system:
1) Care centers on the patient
I’ve written about patient-centered care extensively. Care, first and foremost, should be about what the patient wants and needs. Patient-centered care must put patients on the health care team, in a primary care “home” focused on their needs and concerns, and support them to be the team’s quarterback. Our current health care system relies too much on care provided by “bodypartologists,” specialists who focus on only one piece of anatomy or disease rather than the whole person. I know we can’t go back to the Marcus Welby days when providers knew every patient personally. But I believe we can reorient our health care system to treat not just one medical issue at a time, but to simultaneously consider a patient’s medical, social, and psychological needs. This is particularly important for older adults, who may be trying to manage a variety of complex chronic illnesses.
2) Care addresses the needs of the family
Who provides the most care for older adults? It’s not doctors, hospitals, home care, or nursing homes; families do. Not only should medical professionals include key family members in medical decisions, but they must also consider the burden that caring for an older adult can place on family members. Right now, we are working with AARP and the Family Caregiver Alliance to help Aging and Disability Resource Centers (ADRC) better assess and address the needs of families caring for older adults. As part of this effort, we supported the development of new professional standards by the National Association of Social Workers to enhance social work practice with family caregivers of older adults. I hope these standards, as well as other efforts to support the needs of family caregivers, become more widespread.
3) Care is better coordinated
Nothing frustrates me and my colleagues here at the Hartford Foundation more than stories of older adults whose vital medications were discontinued during a hospital stay; who were prescribed medications by different doctors that either duplicated each other or were known to have harmful interactions; or who bounce right back into the hospital only a few weeks after discharge because of a health emergency that could have been prevented by proper follow-up with their primary care provider. These stories aren’t frustrating because there are no solutions—there are! We have funded three care coordination programs—Eric Coleman’s Care Transitions Intervention, Mary Naylor’s Transitional Care Model, and Society for Hospital Medicine’s Project BOOST. Although each program uses a different approach and combination of health care professionals, each accomplishes the same goal: making sure that health care professionals have the information they need about their patients, and making sure patients get the follow-up care they need after a hospital stay. So … why are we still waiting for these great programs to improve the standard of care? I want to see these evidence-based approaches spread throughout the country.
4) Care focuses on quality of life and patient goals
I like to quote Dr. William Osler: “The good physician treats the disease; the great physician treats the patient who has the disease.” People are unique, and have different approaches to disease. Some, when confronted with a terminal illness, opt for aggressive, curative treatment until the end. Others, like me, opt for primarily palliative measures, interested more in supporting quality of life for as long as possible. We have to allow patients to choose the care that’s right for them. That means making sure that all patients have access to the information they need to make appropriate decisions. Plus, patients managing multiple chronic illnesses need to have all of their health challenges considered together, not one at a time by a hodgepodge of specialists. I truly believe that if patients understood the likely outcome of disease, particularly life-limiting ones, more would opt for a focus on quality afforded by palliative care. Palliative care can also go hand-in-hand with curative treatment to offset the side effects of chemotherapy and radiation. We at the Hartford Foundation have been championing palliative care for years, primarily through funding Diane Meier’s Center to Advance Palliative Care. Now that I am a consumer of these services, I am even more driven to see palliative care become a standard component of care anytime patients need to manage pain and debilitating symptoms.
5) End of life care is more compassionate and driven by preferences
Following from the above point, we particularly need to be better at supporting people at the end of their lives. No one should be forced to undergo unnecessary and painful treatment that has little or no hope of improving or extending life. We even have a tool to help with this: POLST, which stands for Physicians’ Orders for Life-Sustaining Treatment. It allows patients to express their wishes about various end-of-life interventions, such as intubation, defibrillation, and even antibiotics. POLST research shows that POLST use significantly reduces unwanted hospitalizations, provides treatment consistent with patients’ wishes more than 90% of the time, and decreases medical errors. Moreover, the process of completing POLST can spark important conversations with family members that can make end-of-life decisions easier. It is currently endorsed in only 15 states, with over 29 states developing programs. I want to see it available in all 50 states. Death is part of life and I believe POLST should be part of health care.
I need your help to implement these changes. I am doing what I can—writing, speaking, blogging, tweeting. I am happy that my writing here has led to additional opportunities to reach new audiences, such as publishing a recent Narrative Matters in Health Affairs, giving a talk for the NIH Seminar Series called “Medicine: Mind the Gap”, and serving as a panelist for TEDMED’s Great Challenges of Health and Medicine, where I will be advocating for the “Role of the Patient.” But I can’t do this alone. I need everyone who is concerned about how we care for older people in this country to advocate for these changes early and often. Help me check these items off my bucket list—not for my sake, but for the sake of our nation.
My terminal diagnosis hasn’t slowed me down. In fact, it makes me work even harder. Leonardo Da Vinci summed it up best when he said, “As a well-spent day brings happy sleep, so a life well spent brings happy death.” I hope my impatience is contagious.