State of Health Blog from KQED News » Advance Care Planning

Engage With Grace This Thanksgiving Weekend

Lisa Aliferis — Fri, 23 Nov 2012 22:31:48 +0000

Editor’s note: State of Health is participating in the Engage with Grace blogrally. Engage with Grace aims to get people talking about their wishes for end of life and advanced care. The Health Care Blog has put up the HTML code, if you want to host this on your own blog.

By Alexandra Drane

One of our favorite things we ever heard Steve Jobs say is: “If you live each day as if it was your last, someday you’ll most certainly be right.” We love it for three reasons: 1) It reminds all of us that living with intention is one of the most important things we can do. 2) It reminds all of us that one day will be our last. 3) It’s a great example of how Steve Jobs just made most things (even things about death – even things he was quoting) sound better.

Most of us do pretty well with the living with intention part – but the dying thing? Not so much. And maybe that doesn’t bother us so much as individuals because heck, we’re not going to die anyway!! That’s one of those things that happens to other people.

Then one day it does happen — to someone else. But it’s someone that we love. And everything about our perspective on end of life changes.

Know what you want at the end of your life; know the preferences of your loved ones. Print out this one slide.

If you haven’t personally had the experience of seeing or helping a loved one navigate the incredible complexities of terminal illness, then just ask someone who has. Chances are nearly three out of four of those stories will be bad ones — involving actions and decisions that were at odds with that person’s values. And the worst part about it? Most of this mess is unintentional — no one is deliberately trying to make anyone else suffer. It’s just that few of us are taking the time to figure out our own preferences for what we’d like when our time is near, making sure those preferences are known, and appointing someone to advocate on our behalf.

Goodness, you might be wondering, just what are we getting at and why are we keeping you from stretching out on the couch preparing your belly for onslaught?

Thanksgiving is a time for gathering, for communing, and for thinking hard together with friends and family about the things that matter. Here’s the crazy thing — in the wake of one of the most intense political seasons in recent history, one of the safest topics to debate around the table this year might just be that one last taboo: end of life planning. And you know what? It’s also one of the most important.

Here’s one debate nobody wants to have – deciding on behalf of a loved one how to handle tough decisions at the end of their life. And there is no greater gift you can give your loved ones than saving them from that agony. So let’s take that off the table right now, this weekend.

Know what you want at the end of your life; know the preferences of your loved ones. Print out this one slide with just these five questions on it.

Then have the conversation with your family. Now.

Not a year from now, not when you or a loved one are diagnosed with something, not at the bedside of a mother or a father or a sibling or a life-long partner, but NOW. Have it this Thanksgiving when you are gathered together as a family, with your loved ones. Why? Because now is when it matters. This is the conversation to have when you don’t need to have it. And, believe it or not, when it’s a hypothetical conversation, you might even find it fascinating. We find sharing almost everything else about ourselves fascinating — why not this, too? And then, one day, when the real stuff happens? You’ll be ready.

Doing end of life better is important for all of us. And the good news is that for all the squeamishness we think people have around this issue, the tide is changing, and more and more people are realizing that as a country dedicated to living with great intention – we need to apply that same sense of purpose and honor to how we die.

One day, Rosa Parks refused to move her seat on a bus in Montgomery County, Alabama. Others had before. Why was this day different? Because her story tapped into a million other stories that together sparked a revolution that changed the course of history.

Each of us has a story. It has a beginning, a middle, and an end. We work so hard to design a beautiful life — spend the time to design a beautiful end, too. Know the answers to just these five questions for yourself and for your loved ones. Commit to advocating for each other. Then pass it on. Let’s start a revolution.

Engage with Grace.

Alexandra Drane is the Founder of Engage with Grace.

Living With (Not Fighting) Terminal Cancer

Amy Berman — Fri, 18 Nov 2011 21:58:32 +0000

Editor’s Note: This post originally appeared in the health AGEnda blog. On the day the FDA revoked its approval of Avastin, Ms. Berman’s perspective is particularly insightful.

Amy Berman

I have been celebrating Breast Cancer Awareness month. This isn’t just because I had the good fortune to celebrate my birthday in October, but because one year after being diagnosed with a terminal illness and choosing to treat it non-aggressively, I feel great. I have less pain than I did one year ago. The shooting pains I often felt last year in my right breast have almost entirely vanished, thanks to my hormone-suppressing drugs. My lower spine—the site of metastasis—aches only occasionally, and only when I overdo it. If I get plenty of rest and fluids, eat right, and avoid standing for long periods or lifting heavy objects, I remain pain free. Although I may take a few more breaks than I used to or find myself more tired at night, I can still fill each day with meaningful activities, just as I always have.

I can honestly say that this has been the best year of my life, both personally and professionally.

I have been able to spend quality time with my family, while taking advantage of numerous opportunities to speak and write about the importance of individuals being involved in decisions about their own health care, in addition to my ongoing work as senior program officer for the John A. Hartford Foundation. I have been more loving, more accepting of love, and I believe more effective personally and professionally than at any other point in my life. And I feel good.

It may sound odd but—honestly—I am living with Stage IV cancer and it’s been a great year.

Yet while celebrating my unexpected and very welcome happiness, I cannot help but think about others living with cancer and other serious illness this month. My experience is atypical, and not just because I chose a palliative, non-aggressive treatment. I am atypical because I am in my fifties. Most cancer patients—63 percent, in fact—are over age 65. This means that most cancer patients aren’t suffering only from cancer, as I am. Most are also simultaneously coping with other chronic diseases, such as diabetes or congestive heart failure, making it more difficult for them to tolerate debilitating treatments. And for some older adults, their health status before the cancer diagnosis may challenge their recovery.

Because cancer is primarily a disease of aging, we shouldn’t be thinking pink for Breast Cancer Awareness month—we should be thinking silver.

I shudder to think of how I would be feeling had I not been an informed patient, able to fully participate in my own treatment decisions with the help of my medical team. Had I been steered into aggressive treatment, I would likely be recovering from painful surgery while incapacitated due to the overwhelming fatigue, pain, and nausea that go hand in hand with radiation and chemotherapy. If patient-centered care can do so much to keep the quality in what remains of my life, how much more important is patient-centered care for older adults facing not only a terminal diagnosis, but also the presence of one or more chronic diseases? Older adults need care tailored to their individual diagnosis, health status, goals, and beliefs long before they grapple with terminal illness such as mine.

Thankfully, I am not the only one concerned about this issue. The Raise the Voice campaign, an initiative of the American Academy of Nursing, recently hosted a Critical Conversation on best practices in advanced care planning and decision making. The organizers gathered nurse and physician experts in advanced care planning to share best practices, and also included a nurse who could serve as a patient voice. That was my role. When I had the opportunity to speak, I noted that even though death is a common occurrence—2.4 million Americans die each year—conversations around end of life care remain uncommon.

This seems strange to me. We are consumers of health care. In most other areas of our economy, our consumer protection laws afford us safeguards. Health care is, ultimately, a product that we all have to buy, either directly or indirectly through our insurance companies. Yet when we are making the most critical decisions about our health, we are not routinely guaranteed as patients to have full information about our condition and all possible treatment approaches. The decisions are left entirely to the discretion of the doctors and hospitals patients use. And while some health care providers integrate the patient and family in the planning process, we are guaranteed a more full disclosure when buying a house than when battling serious illness.

I believe disclosures about treatment for serious and potentially life-limiting illness should be required. Conversations about the end of life are difficult, but not impossible. Doctors, nurses, and all health professionals have more and more tools at their disposal. We can help patients choose a health care proxy and fill out the POLST form, as my oncology center, Maimonides, does so well. Many organizations are now providing training for providers to help them learn how to approach end of life conversations with their patients, such as the End-of-Life Nursing Education Consortium (ELNEC) led by the City of Hope and the American Association of Colleges of Nursing. At the Raise the Voice meeting, Suzanne Prevost, President Elect of Sigma Theta Tau (the Honor Society of Nursing) and Associate Dean of the University of Kentucky, shared an interesting approach to helping patients understand the differences between treatment options. In a small study, researchers showed terminal cancer patients a video that included patients who chose aggressive care and patients who chose palliative care. The images were neither shocking nor graphic. After seeing the video, many patients who had intended to choose aggressive care changed their minds and chose palliative care.

I am not saying, of course, that palliative care alone is always the right choice. I just believe that patients deserve to make informed choices. All I ask, as Breast Cancer Awareness month comes to a close, is for providers and policymakers to understand that every person experiencing cancer or other serious illness deserves an opportunity to choose a treatment approach tailored to his or her beliefs, hopes, and tolerance, based on the diagnosis, the likely course of the disease, and the chances for survival. Think about the older adults in your life. Would you want them to have a say in decisions that affect how they live for their remaining days and how they die? If we can all “think silver,” perhaps we can make health care better for older Americans. Here’s to another good year. Cheers.

Sixth in this series [from the health AGEnda blog]: