Tag Archives: health crises

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.

Dazed & Confused at the Warehouse

The Costco in our area recently shuttered its long-standing warehouse store and opened a brand-new, bright and shiny and much larger one a few miles away. Eager to see what the new store had to offer (and lured by the prospect of a free roasted chicken), my husband and I made our first visit.

Once inside, it was simply…overwhelming. First, the sheer enormity of the place. It’s hard to visualize what 148,000 square feet of space actually looks like, until you’ve actually sprinted from one end of the store to another (in this case, to pick up an item I’d forgotten, while my husband waited in line with our cart.) There were yet more endless aisles than there had been in the old store, with unreachable goods stacked up to the ceiling. I barely knew where to find anything in the old store, but the new one was even more of a mystery. There was no way to figure out the logic (or lack of it) behind what products were located where. There was no one to guide us; what staff members we saw were absorbed in their own tasks.

So, in short, I felt lost, confused, intimidated, turned off and discouraged.

And it made me think: maybe this is a medical metaphor. Maybe this must be how too many patients and caregivers feel when they’re suddenly thrust into the health care system to deal with serious illness or a medical crisis. The hospital setting alone can be jarring and intimidating. In a crisis, patients (or their caregivers, if patients aren’t in a position to speak for themselves), must make decisions about treatment and care fairly quickly.

Much has been written about how shared health care decision-making (by patient and physician) has come to replace the old paternalistic model in which physicians mostly made decisions for you. But the fact is, particularly in a crisis, there is not an even playing field between you and your medical team. The team has the advantage of having far more knowledge and experience with your condition than you, and unless the team includes gifted communicators, that puts you at a disadvantage.

So what can you do to avoid becoming dazed, confused and fearful about making harmful choices in a medical setting? A little preparation, while you’re in good health, can help. Here are just two of many useful sources:

Recognizing that patients need better information about what care they truly need, Consumer Reports and the American Board of Internal Medicine (ABIM) Foundation have developed the Choosing Wisely® website (http://www.choosingwisely.org/patient-resources/) which aims help consumers choose care that is supported by evidence; doesn’t duplicate tests or procedures already received; and is truly necessary. More useful information is available at http://www.consumerhealthchoices.org, including advice for caregivers and treatments and tests for elders.

One of the best things you can do is to have an advance directive that spells out the kind of care you’d want if you couldn’t speak for yourself. Caring Connections is a program of the National Hospice and Palliative Care Organization (NHPCO). You can find advance directive forms for each state on its web site: http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3289. Caring Connections makes its forms available free of charge.

I haven’t yet found a road map for our local Costco. Fortunately, though, there are many to be found, pre-crisis, in health care.