Health AGEnda

The Essential (Before I Kick the) Bucket List

Posted in category End of Life Care, Health Policy

29 comments

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.

My request

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.

29 thoughts on “The Essential (Before I Kick the) Bucket List

  1. Amy, This is exactly the no holds barred approach we need in healthcare to intensify our efforts. In case management, care coordination, information technology of Care Management Plus (developed and disseminated with the support of the Foundation) we have trained hundreds, but thousands of primary care clinical teams, health plans, and health care providers and leaders need to become adept at new skills to meet the needs of older Americans with complex health and social needs. The John A. Hartford Foundation support of Centers of Geriatric Excellence, Social Work Initiatives, and tools have strengthened the expertise of faculty and helped eliminate the gaps in education for their healthcare trainees. Whether physicians and nurse practitioners providing primary care and care across settings, or nurse care managers and social workers coordinating and partnering with patients and their caregivers or other healthcare workers, many are better prepared to provide the “essentials” because of the broad reaching education efforts, and proactive, innovative models of the Foundation.

  2. Beautifully stated, Amy! Your impatience in infectious.

  3. Amy, I am so glad that you are alive and kicking, writing and speaking…Who knows? You inspire so many people. Thank you!.

  4. I am 85 years old with three major health issues. The cardiologist told me, “I can not make a princess out of you, but you’re not a pumpkin either!”I want to enjoy my family and friends as long as I am able. I am interested in supporting Palitive care.
    I have a severe stricture of my bowel. Ten years ago I had a colon resection due to cancer. I need the team support to deal with a stricture that even a pediatric scope can not pass through.

  5. I admire your courage and your priorities in sharing your story to benefit others. You are right to be impatient. We know what it takes to give more respectful, compassionate, coordinated, and individualized care with the goals of the patient guiding that plan of care. As a practicing primary care physician, I passionately support your message. Those of us who have the opportunity to impact policy and systems change must also work to more effectively (and, yes, I hear you: more RAPIDLY) bring about tranformation in health care. You mention the POLST program as providing a system for better support for persons with advanced illness and their families to talk about their goals, have their wishes recorded as medical orders, and respected across settings of care. In the past five years, the number of states using POLST has doubled, and all of us welcome the opportunity to continue to support the growth of the program with implementation in additional states. Thank you again for inspiring all of us to be a bit more impatient.

  6. i have it too

    I am in California and I cant get a diagnosis in Chico California- no health care…my symptoms are pretty bad.

    i dont have health care but I do have the LORD JesusChrist

    I think I will die, and I am almost OK with that

    • Dear Barbara,
      I don’t know why you can’t get a diagnosis but it’s important that you take care of yourself. Many forms of breast cancer have excellent treatment options and outcomes. In Chico, CA–and in most communities–there are places to get free screening and mammography. They will help you find care if you are diagnosed with the disease (although I hope you don’t have it). Please contact the Butte County Public Health Clinic at 695 Oleander Avenue in Chico, CA. Their phone number is (530) 879-3665. Their website is http://www.buttecounty.net/publichealth/clinic/clinc.html.
      Best wishes to you,
      Amy

  7. I certainly agree with Amy’s list!
    I’d encourage her and others to add a couple of what could be seen as short-term demands that will move us more quickly to that “true North Star” set of goals.
    First, we need care plans – we need them to reflect honest assessment of situation and course, we need them to address the full scope of service needs, we need them documented and available, and we need them to arise from engagement of the identified patient and family. To start, we need a way to measure their quality (CMS/NQF), provide feedback on their appropriateness (Conditions of participation and surveys), and put them into meaningful use stage 3 (ONC).
    Second, we need a layer of local management of the overall “system” for care of “complex” chronic illness – with local metrics on outcomes and supply and accord on shared processes. Services for the very sick, frail, and disabled are quite local and quite broad (housing, nutrition, caregiver support, medical and nursing care, etc). Imagine what we could do with 1000 good care plans in a community – we could actually understand supply and outcomes and plan a production process for effectiveness and efficiency! We cannot even “see” the local system or its performance at present. CMMI and the Administration for Community Living could take the lead in financing and encouraging the development of this essential element.
    And third, we need outrage. We need a political force sufficient to push back against what Amy calls “bodypartology” – and I’d add, “settingspecificpractice.” We need CMS to have a beneficiary advisory group with a staff. We need consumer and caregiver groups to speak out more forcefully. We all need to be less accepting, e.g., of the errors of failing to offer palliative care or mishandling transitions. Otherwise, inertia and established power wins, and we all lose as we face our period of needing a coherent chronic disease support system. We all have organizations that could be more active, more edgy, more risk-taking – if we encouraged them and provided the backing.
    What do you think? What are the strategic steps?!

    • Joanne – as usual cogent remarks that add an additional emotional spark to the conversation. As you know I and NFCA have been fighting this fight for years and trying to move the concepts upstream – palliative care is good chronic illness care, at any age, as far as I am concerned.

      Our big issue at the moment is the identification of family caregivers on medical records. It is time to move family caregivers from the category of undocumented workers to key members of the healthcare team.

      It’s been a while – time to get together – the daily grind for breakfast one day? Suzanne

  8. So what can a body do?

    I am in Alabama, and finally had to swear of doctors altogether after three oncologists, two surgeons, two gps and one pulmonologist said I was a suicidal maniac for declining “curative” surgery for a new Stage I primary after receiving palliative radiation for a Stage IV one. The cynic in me says they just want to wring a little more revenue out of my body while it’s still warm. I am sure their intentions must be good, but I can’t fathom how they can’t understand that leaving a patient be can sometimes be the best medicine.

    I am out of doctors and tying up my affairs so I can move to a town with a doctor who can stick to the palliative program.

    • Dear friend,
      Many people live long lives free of cancer thanks to treatment. And many more manage the cancer with the aid of treatment. Palliative care–which would address your pain and symptoms–can be coupled with other treatment. Stage I is cancer that is local and not spread. Given that you have the good fortune of catching this terrible disease early I suggest you ask your oncologist about different treatments, how they will make you feel now, and the likely benefits and risks of the treatments. You can also ask what is covered and what your costs may be. you need to be armed with enough information to take charge of your body. But please do not give up because of the word cancer. Even I–at Stage IV–will not give up. You are in my prayers, Amy

  9. Amy, you’ve hit another grand slam with this post. Your 5 priorities are beautifully-articulated and really shine a light on what the path for moving ahead should look like. Even more important, I believe, with your attitude you yourself are setting an example that we can all benefit from regardless of our stage of life. Again – thank you!

    • Dear Paulette,
      Thank you for all that you and the Williamsburg Community Health Foundation are doing to support better care in Virginia. I look forward to seeing you soon.
      Warmly,
      Amy

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  12. Amy – You are an inspiration to all of us! If your bucket list was acheived a lot more people with serious illness would have experiences like yours.

    • Judy, you inspire me and many others with the work you do at the Colaition for Compassionate Care in California (http://www.coalitionccc.org). On behalf of those experiencing serious illness, thank you Judy for advocating on behalf of Physician Orders for Life Sustaining Treatment (POLST). California–with support from Kate O’Malley and our wonderful colleagues at the California Health Care Foundation–is a state on the leading edge.

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  14. Dear Amy,

    Thank you for sharing your life’s journey as a cancer survivor and providing advice for those suffering from the disease. Your words and actions inspire us to work harder toward achieving your request for patient-centered quality care for older adults.

    Best

    Best

  15. Amy, you are the brightest star in the crowded universe of people who write about living with life-limiting illness. The difference is that you do it in a way that validates what living is all about. Your writing should be a “must read” by all who are missing out on the every day succor of life’s precious moments every day. You totally rock the survivorship movement. Carpe Diem, dear Amy!

  16. Amy,
    It is good to see you again at the NLN conference. Thanks for your courage and your love of life.

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  19. How can I help with your bucket list here in Wisconsin? I’ve met with the palliative care team at Meriter Hospital in Madison and am impressed with the idea but have not needed their services as yet. Do you have any other local contacts that could put me to work?

    • Dear Louise,
      You are wonderful for asking how you can help. You also said that you don’t need palliative care yet. The truth is (evidence shows) that when people get the extra layer of support provided with palliative care starting at the beginning of a cancer diagnosis that they live better and longer. When you had the discomforts from your medication that a palliative care provider could help. But I also wanted to get back to what you might do. You might consider volunteering with the American Cancer Society. People like you and I can help by talking to those newly diagnosed, we can advocate for the availability of palliative care. Volunteering can fit with your interests and your talents. You have a great spirit!
      Warmly, Amy

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