Category Archives: Advance Care Planning

Telling the Story of Your Life

I recently sat in on a terrific session at the 2016 Hospice Team Conference in NJ. about the importance of narrative in hospice care, presented by Jeremy Lees, LSW , chaplain and bereavement counselor at Holy Name Medical Center’s hospice, where I am a volunteer.

It started me thinking about how important it is that we write or record the story of our life — not only for our loved ones, but also for ourselves. To make sense of the arc of our life, our place in the world, our sense of purpose. And the best time to do this is when we’re healthy and vital!

Here’s my latest blog post from SixtyandMe, with some tips about how to get started.

 

6 Steps To Take for Better End-of-Life Care

I was honored recently to be asked by the Berkeley, California-based Greater Good Science Center to do an essay, based on my experiences as a hospice volunteer and reporting/researching my book. Here are the highlights:

* Educate yourself about the different key treatments for end-of-life care, so that you can make informed decisions.
* Start conversations with loved ones so that they are clear about your wishes for care.
* Understand the benefits of palliative care and hospice care and know when to ask for them.
* Learn how to communicate effectively with doctors and medical staff.
* Research nursing and assisted living facilities in your community, in case you need them.
* Advocate for better end-of-life care for everyone.

You can read the full essay here

A Necessary Look at the End of Life in an ICU

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They say a picture is worth a thousand words. But that phrase was probably invented before the advent of film and video. Recently I watched a remarkable 24-minute short film, “Extremis” (available now on Netflix) and I can tell you unequivocally that it is worth many, many thousands of words.

Set in the intensive care unit at Highland Hospital in Oakland, California, it is an unflinching view of dying. More precisely, it shows how the technology that can prolong our lives when we are desperately ill raises important questions about the difficulties in making decisions at the end of life, not only for the ill but also for those who love them and face the agony of impending loss.

It’s a relatively short film, but very powerful. I would liken its brevity to the short stories of Alice Munro, who can tell you more about the human condition in 25 pages than most novelists can. The film is the result of a fortuitous collaboration between Dr. Jessica Nutik Zitter, an ICU physician and palliative care specialist who’d thought about the potential impact of a film project ever since she had watched the 2012 documentary “The Waiting Room,” filmed at Highland Hospital; the film director Dan Krauss, who was not initially drawn to the subject of end-of-life issues but ultimately found the ICU to be a “truly fascinating world where science and faith intersect,” as he told Modern Healthcare;” and Highland Hospital. Filming took months. It won Best Short Documentary awards this year from the Tribeca and San Francisco International Film Festivals.

“Extremis” mainly follows the wrenching struggles of two families. We meet Donna, in the end stages of a form of muscular dystrophy and on a ventilator, her husband and daughter with her; and Selena, unresponsive after she had stopped breathing in the car on the way to the ER, now on a ventilator too after spending up to 26 minutes without oxygen. We meet her daughter and her brothers, too, each of whom has different beliefs about how to proceed. That these families allowed filmmakers to record them throughout their ordeals is truly remarkable – and a public service.

“We’re all gonna die…and it’s good to have a little bit of a say in how,” Dr. Zitter remarks at one point in the film. (Her upcoming book—Extreme Measures: Finding a Better Path to the End of Life— is due out in February.)

How do we express our own wishes? In the past several years, much has been written about the importance of signing an advance care directive; with it, if you face a medical crisis and cannot speak for yourself, the person you’ve chosen to speak for you would be guided by your wishes and values. And yet, only a small percentage of adults in the U.S. have actually done this.
That shouldn’t be surprising; how many of us really want to think long and hard about our own mortality? And how many of us can really envision what it might be like to live on thanks to the many mechanical inventions available to us?

Watch this film. You’ll have the clearest view I’ve seen of their reality. Moreover, you’ll see that in the absence of a directive, those closest to you will have the enormous and sometimes guilt-laden burden of making decisions for you, adding to the emotional turmoil that attends the end of life even in the best of circumstances. You’ll also see that decision-making can present moral and ethical dilemmas for the physicians treating you.

You can find advance directive forms for each state at Caring Connections, a program of the National Hospice and Palliative Care Organization, here.

Finding Quality Care for Serious Illness — Before a Medical Crisis Hits

IMG_1100 I’m excited and honored to tell you that this fall, I’m teaching a new two-session course called “Let’s Manage Late Life Well” at the Lois E. Marshall Institute for Learning in Retirement (ILR) at Bergen Community College in Paramus, NJ. The course will be offered on October 31 and November 7, from 10:30 a.m. to 12:00 p.m. You can register for this and other courses at the ILR starting on Monday, August 29.

Too often, caregivers and people struggling with serious illness face medical crises that leave them feeling confused, frightened and overwhelmed. The best way to prevent that feeling of being lost and powerless in the health care system is by becoming better educated before a medical crisis hits.

The course is designed to help people become better educated about what good quality care looks like; as well as how to communicate better with health care professionals; how to make better-informed decisions for themselves or their loved ones; and how to find the information we all need about the conditions that we are likely to face in late life.

“Let’s Manage Late-Life Well” is a “bonus” course, offered at no extra charge with ILR membership for the Fall 2016 and Spring 2017. ILR membership entitles you to four courses each semester, plus two additional “bonus” courses. Full membership fee for Fall 2016 and Spring 2017 is $215. Registration begins on August 29th for the Fall 2016 semester.

This course will cover:
• An overview of innovations in late-life care (including those in NJ).
• How to communicate better with our health care specialists.
• How to learn about the quality of care in hospitals and long-term care facilities.
• Better alternatives to conventional skilled nursing homes.
• Strategies and tips for those caring for loved ones with dementia.
• What you need to know about advance care directives vs. POLST (Physician Orders for Life Sustaining Treatment) forms.
• Dispelling the many myths about palliative and hospice care.
• Plus: Where to find help: useful resources and links for caregivers and for people contending with serious illness.

Saluting an Unlikely Hero

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Sometimes you find a hero in the unlikeliest of places. This week I came upon an obituary for Dave Schwartz, 63, a long-time Weather Channel meteorologist. He had twice overcome pancreatic cancer 10 years ago, but began his struggle anew with a stomach cancer diagnosis in 2015.

Mr. Schwartz had joined the Weather Channel in 1985, initially as a newsroom assistant at the same time that he was working for the Fulton County Health Department in Georgia. He became an on-camera meteorologist in 1991.

Cancer, like so many serious illnesses, is often enshrouded in silence and secrecy. It would have been understandable had Schwartz decided to simply take the time off that he needed to undergo treatment and then return to work without talking about his absence. Instead, he chose Feb. 4, of this year, World Cancer Day, to address his viewers.

This is some of what he said: “I want to let you know the reason why I have lost 35 pounds in the last five months is that I am being treated for cancer,” he said on camera. “Stomach cancer, of all things, for a foodie.”

The following month, he went public again, via an interview with Bailey Rogers, a communications specialist at the Weather Channel, for the website Medium. Rogers asked about the side effects of cancer and its treatment, most likely expecting to hear about fatigue, pain, discomfort, etc. Instead, Schwartz responded that “In a sense, having cancer and the impact it has on my life has really enriched my life tremendously through strengthening my relationships with people.”

He also talked about how he and his wife had become philosophical about his condition. He went on to say that “None of us is guaranteed tomorrow — we all know that. As far as I’m concerned, whether you have cancer or not we are all in the same boat. None of us really know that we have more time than what we have right now. So I’m no different than anyone else. I have my struggle, I have my cross to bear — other people have their crosses to bear — and let’s hope that we wake up alive tomorrow.”

I found Schwartz’s comments – not to mention the bravery in sharing his struggle publicly – deeply moving. And it made me think about how powerful storytelling is.

We can learn so much from others not only about the nature of some of the more pernicious illnesses that afflict people, but also about how we can confront illness – mortality itself – with something approximating appreciation for the gift of life in the moment and maybe even a hint of grace.

And it also made me think: Wouldn’t it be helpful if more public figures could follow Dave Schwartz’s lead and talk about the struggles they might be experiencing and, along the way, educate us about what treatment and living with illness is all about?

And while we’re at it, wouldn’t it be helpful if these folks could make some news by talking about and signing advance care directives? Maybe talk about how they thought about the prospect of measures like CPR, feeding tubes and intubation and decided, “Nope. Not for me.” And then maybe figure out a way to have it go viral, much as the “ice bucket challenge” did for ALS. That would be pretty heroic, too.

Keep It Moving: A Key to Well-Being

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You know the old cliché: Age is only a number. Well now there’s a study that suggests that it’s true; and that age alone isn’t the best predictor of health. I wanted to share some of the study’s findings because, at a time when we are assaulted daily with horrendous and dispiriting news on all fronts, this should give many of us a reason to smile.

Here’s what a large-scale study by a multi-disciplinary team of researchers at the University of Chicago found: psychological well-being, sensory function, mobility and health behaviors are essential parts of an overall health profile that predicts mortality better than age alone. (Italics mine.)

Rather than focus on medical issues, such as heart disease, cancer, diabetes, high blood pressure and cholesterol levels, these researchers came up with a different model of health that considers psychological, social and physical factors, such as mobility. It paints a different picture of how vulnerable – or not — we might actually be.

Demographer and study co-author Prof. Linda Waite said that “some people with chronic disease are revealed as having many strengths that lead to their reclassification as quite healthy, with low risks of death and incapacity.” On the other hand, though, some people considered healthy might have significant vulnerabilities that could affect their mortality or incapacity within five years.

What contributes to those vulnerabilities? Social isolation, as if we hadn’t guessed this before, undermines people’s health. So does poor mental health, like the depression that can accompany social isolation. Poor mental health is said to affect one in eight older adults. Poor sleep patterns, heavy drinking, having a poor sense of smell and walking slowly also undermine health. By contrast, being socially engaged helps keep us healthy, as does staying physically active. Mobility, in fact, is one of the “best markers of well-being,” according to the study.

And here is a not-so-fun fact: Breaking a bone after age 45 is a “major marker for future health issues,” the study concluded.

Among the more interesting – and counterintuitive – findings:
• Cancer itself is not related to other conditions that undermine health.
• Obesity seems to pose little risk to older adults with excellent physical and mental health.  
• Older men and women have different patterns of health and well-being during aging (and yes, women tend to live longer).

The study, part of the National Social Life, Health, and Aging Project, supported by the National Institute on Aging of the National Institutes of Health, surveys a representative sample of 3,000 people aged 57 to 85, done by the independent research organization NORC at the University of Chicago. You can read “An Empirical Redefinition of Comprehensive Health and Well-being in the Older Adults of the U.S.,” in the Proceedings of the National Academy of Sciences here.

So let’s get together with our friends and family, take a walk (being careful not to trip and break a bone) and raise a toast (though not too many) to our health. Let’s make sure we can smell the roses. Literally. And on a more serious note, let’s pay attention to what our communities are doing to help ease elders’ loneliness and isolation.

What’s Your Big Idea About End-of-Life Care?

The Aspen Institute Health Strategy Group wants to hear from us, by June 1explosion-1246507_640. Specifically, in advance of its Spotlight Health session in June, it wants to know: what is our big idea about end-of-life care?

Of course I couldn’t resist submitting my own two cents’ worth. Here it is:

From my vantage point as a hospice volunteer, seasoned journalist and author of a just-published book about end-of-life issues, my big idea is that at age 40+, hospice in the U.S. is in the midst of a mid-life crisis and needs a radical transformation. Not in its philosophy or system of care, but in how it is paid for. It’s time to start from scratch and design end-of-life benefits based on people’s needs, not on their prognosis.

Although hospice benefits are continuously being tweaked, their broad outlines have not fundamentally changed since its inception. But the very nature of the end-of-life experience now is far different than it had been in the 1970s, when hospice cared mostly for people with cancer. Hospice was not envisioned to address the needs of the frail elderly living with multiple chronic conditions, or the ravages of dementia, whose disease trajectories are certainly far less predictable – and often more complex — than cancer.

Two of the essential elements of the Medicare hospice benefit have come to haunt us. First, it is based on prognosis, that is, it is available for a limited time – six months if the illness runs its normal course. Second, it requires that a person give up any treatment or care that might be deemed “curative.” The choice is stark: cure or care. Either/or, but not both. Hardly surprising, then, that so many people do not even choose hospice care until it is very late in the course of their illness. Too late, in my view, to benefit fully from what this holistic, interdisciplinary and profoundly compassionate care can offer.

I believe we have come to a “tear down this wall” moment in end-of-life care. Tear down the wall that separates palliative care and hospice care; end the tyranny of the six-month cutoff for eligibility. Tear down the wall that separates people who still want to continue treating their illness from those who can accept a natural death. It’s time to develop a health care policy and payment system that embraces concurrent care without costing taxpayers more than the current system that is fragmented, costly, often dysfunctional and unsustainable.

End-of-life care involves so many intertwined issues that must be addressed. Just a few: better education and training for physicians and nurses; better training and better pay for the home health and personal care aides who are on the front lines of caring for the very ill; coordinated care aimed at helping people live as well as possible and in their homes as long as possible, without hospital readmissions; focusing more on culture change and person-centered care in long-term care settings; and more effective ways of providing dementia care.

But public policy changes would have a huge impact on all these issues. How do we get to a better future? In a June 2015 Health Affairs article about what is ahead for Medicare’s next 50 years, former Senate Majority Leader Tom Daschle defined his prescription for success as: good public policy, superior technology and enlightened leadership. It seems to me that this prescription misses one element, which is public engagement. Transforming hospice care will likely not happen without vocal and insistent advocacy from all of us. So it’s time for my fellow aging baby boomers to tap back into our activist genes and start insisting on the kind of care we are all going to need in the not-so-distant future.

The Aspen Institute Health Strategy Group is part of the Health, Medicine and Society Program at the Aspen Institute. Co-chaired by former US Health and Human Services Secretaries and Governors, Kathleen Sebelius and Tommy Thompson, its 24 members are senior leaders across influential sectors: health, business, media, technology and more.

When Less is More for Elders

curingmedicarecover2 Sometimes Andy Lazris is not popular with the adult children of the very old people he sees in his practice as an internist and geriatrician as well as in his role as medical director at assisted living and skilled nursing facilities. Why? Because his is a “less is more” approach to care for elders who typically live with multiple chronic conditions. He believes in fewer diagnostic tests, less clinging to the orthodoxy of “ideal” numbers gauging, for example, glucose, blood pressure and cholesterol. His focus is on helping his patients live a better life, and he favors better nutrition, more physical activity and social engagement. He also has a deep appreciation of the fact that aging, decline – mortality itself — are inevitable facts of life.

That approach is hard for caregivers to accept sometimes, particularly when we are all bombarded by news or advertisements for near miraculous results offered by new drugs and leading-edge treatments and surgical procedures. So off they may go to medical specialists whose approach may be wholly different, but not necessarily better and often far worse in terms of the elder’s quality of life.

Ironically, Medicare is at the heart of the disconnect between the kind of care elders mostly want and what they get – over-testing, over-treatment and over-medication. In its pursuit of quality and thoroughness in elder care, Dr. Lazris says, Medicare rewards aggressive measures by paying for tests, treatments and procedures.

Dr. Lazris explores the many implications of Medicare policies in a new book, “Curing Medicare,” to be published this May by Cornell University Press. Through stories about patients and his own challenges in dealing with the health care system, he shows how these policies often achieve the precise opposite of what they were intended to do.

My own view is that as baby boomers age over the next decade or two, Medicare policies dealing specifically with palliative and hospice care will need a radical overhaul. So I was glad to have had the opportunity to talk recently with Dr. Lazris about his book. His aim is to educate the patients and family members who are keenly interested in how our health system works.

He is hoping that readers will use the information to foster conversations with their doctors. He doubts that this will help fix the health care system, but, he said, “Do it on a small scale. Advocate for yourself, on an individual level.”

An outstanding discussion in the book addresses the differences between “absolute risk” and “relative risk” in assessing various treatment options, a subject Dr. Lazris told me he talks “incessantly” about in public speaking engagements. In 2007, Erik Rifkin, PhD, and Edward J. Bouwer, PhD, wrote a book called “The Illusion of Certainty: Health Benefits and Risks,” in which they present the elegant “Risk Characterization Theater,” a graphic of a hypothetical 1,000-seat theater, to explain the difference between absolute and relative risk. You can learn about it here. The graphic reprises its role in “Curing Medicare.”

Misunderstanding the difference between the two helps to explain the tremendous overuse, in Dr. Lazris’ view, of the blood-thinning drug Coumadin, for example. And in a recent blog post, Dr. Lazris applied the Risk Characterization Theater” to analyze recent findings about the potential risks of proton pump inhibitors – drugs like Prilosec – related to chronic kidney disease.

Published studies, he said, are all about relative risk; adding that physicians don’t know enough about that. But when he explains it to patients even in their nineties, they are “quite sophisticated in figuring things out.”

What would Medicare reform look like to Dr. Lazris? It would “put power in the hands of well informed patients who can control the course of their care.” In short, it would promote individualized care based on patient preference and provide medical interventions shown to be beneficial to the individuals being treated. It would be cost effective. It would give patients choices to maximize patient satisfaction, as well as enhance the doctor-patient relationship.

The bottom line, he writes, is that “the focus of care is to help patients live a better life.”

If your appetite for not-so-arcane medical information has been whetted, visit http://www.thennt.com/home-nnt. NNT stands for “number needed to treat” patients to result in a benefit to one person. A group of physicians have developed a framework and rating system to evaluate therapies based on their patient-important benefits and harms as well as a system to evaluate diagnostics by patient sign, symptom, lab test or study. A lot of this is technical, of course, but the colors used are not: Green indicates that the benefits outweigh the harms, while Yellow indicates that benefits are unclear. Red indicates no benefits and Black indicates that harms outweigh the benefits.

To learn more about over-treatment, visit the Lown Institute’s website. It also includes five questions to ask your physician about a recommended test, medication or procedure.

An Artful Way to Teach About Hospice

Not everyone understands what hospice care is, or what hospice care teams – physicians, nurses, home health aides, social workers, chaplains and volunteers – actually do. Not only for people who are very ill, but for their caregivers, too.

So, educating the public about it continues to be critically important. One unique and moving way to do that was organized by the Louisiana-Mississippi Hospice and Palliative Care Organization:ArtofHospice a traveling exhibit of artworks created specifically to convey “the compassion and dignity that hospice provides,” LMHPCO executive director Jamey Boudreaux told me.

It took a lot of thought and a fair amount of time to organize the project. A competition was launched in 2013 at the organization’s annual conference, where member hospices were encouraged to find an artist they could work with. But before the artists could apply paint brush to canvas, to get a better sense of the work, they were to go through hospice volunteer training and then spend time shadowing hospice team members. After that, they created a variety of works in different media, including paintings, sculpture, stained glass and photography. In 2014, a group of art critics and artists judged the work of 40 artists, representing 40 member hospice agencies, and selected the 16 finalists that would make up the traveling exhibit.

"A Window Into Hospice," by Tammy Hromadka. Six panels set in an old window frame, each showing the hands of a caregiver.
“A Window Into Hospice,” by Tammy Hromadka. Six panels set in an old window frame, each showing the hands of a caregiver.

Shown here is artist and musician Tammy Hromadka’s “A Window Into Hospice.” Ms.Hromadka volunteers at CHRISTUS Cabrini Hospice’s Grace Home in Alexandria, Louisiana.

As Jamey Boudreaux pointed out, though, “The Art of Hospice” wasn’t just an art exhibit. Over an 18-month period, each of the 10 venues in Mississippi and Louisiana also presented educational courses for physicians, nurses, CNAs, chaplains and volunteers. The public at large also attended sessions devoted to advance care planning. The exhibit stayed in each venue for three or four weeks.

“It raised the level of awareness about hospice in these communities,” Boudreaux said.

Still, LMHPCO found that there was much misinformation or misunderstanding to address about what hospice is all about. Some people were unaware, for example, that hospice is not just “the government coming in to take over for family members,” Boudreaux explained; or that it does not provide 24-hour care; or that there are private agencies – nonprofit and for-profit – that provide this care.

The traveling exhibit involved many logistical challenges and was a one-time event. Boudreaux has talked about the art project with fellow hospice organization executives, but so far none have sought to replicate what LMHPCO did. Most of the artworks have been returned to the artists and the remaining few soon will be returned.

So what does the education committee of LMHPCO do for an encore? The focus will be on providing care for the homeless and for those who are the so-called “un-befriended” — people who do not have caregivers, at the organization’s upcoming conference. I’m eager to see its creative approach to professional and public education after that.