Category Archives: hospice care

Hospice care. For those with a life-limiting illness, hospice provides comfort, symptom management and emotional support for patients and their families. Hospice services – nurse visits, home health aides, social workers and chaplain visits – are usually provided in patients’ homes.

An Early Valentine’s Day Gift! A Free Book!

Here’s my early Valentine’s Day gift to you! It’s a chance to win a FREE Kindle version of my book, “Last Comforts: Notes from the Forefront of Late Life Care.”

Enter before Feb. 14 and you could be among the 20 winners of this award-winning book about educating ourselves and our loved ones about the best possible care in our later years, to avoid medical crises down the road. It’s a book with a lot of heart and a lot of practical guidance, too!

The giveaway will only last from Feb. 1 to Feb. 14, so enter now. And if you already have the book, be sure to tell your friends!

Here’s the link: https://www.goodreads.com/giveaway/show/276947-last-comforts-notes-from-the-forefront-of-late-life-care

 

Magical Thinking in End-of-Life Issues

Recently I had a chance to see how the human heart and spirit can overrule the rational mind, even in hypothetical circumstances. At a local educational event  on palliative and hospice care, a woman in her 80s in the audience was attentive and engaged during the presentation. During the discussion that followed the presentation, she talked about how she wanted to look into becoming an organ donor.

But then, she asked the experts if her heart stopped and if she had decided to opt for CPR but it didn’t work, “Can’t there be a miracle?” In other words, before being pronounced dead, couldn’t there be some other way to revive her and enable her to live on? And would she be pronounced dead before her miracle kicked in?

We all want miracles, do we not? We want to have hope when all evidence points to the contrary. That’s why I found her question so poignant, so human. This woman, who had at first seemed to be a realist regarding the question of mortality – accepting it on an intellectual level – was at the same time wandering in the realm of magical thinking.

We’re all susceptible, truth be told. But there are a few things to keep in mind to avoid wandering into this realm ourselves.

I blogged about it for the website sixtyandme.com, and you can read it here:

Wishing you all a wonderful start to summer, this coming weekend!

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.

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.

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.

An RN’s View From the Front Lines of Care

When her children were young, Theresa Brown, RN, made a mid-career change: from English professor at Tufts University to nursing, and chose to specialize in medical oncology. We should all be glad she did, because she has chronicled her experiences – and by extension, illuminated some of the most pressing issues and challenges in our health care system – in two excellent books as well as in personal essays in The New York Times. And she does it with clarity, insight, humor and understated eloquence.TheShiftcover

Her voice is important because nursing truly is the heart of care for the ill. No other health professionals spend as much time providing hands-on care for the sick than nurses. Our health care system is increasingly complex, technology-laden and hyper-specialized. So the need for a humanistic perspective from those who are on the front lines has never been more pressing.

I had the great pleasure of interviewing Theresa recently, following her book tour for The Shift: One Nurse, Twelve Hours, Four Patients’ Lives. The book focuses on a day in her life in the oncology ward of a Pittsburgh teaching hospital; she subsequently left that position and currently works as a hospice nurse, visiting people in their homes.

Just a couple of highlights of our conversation:

Theresa told me that she is comfortable in her current role as a home hospice nurse. In fact, she said, one reason she made this switch was that she always likes to learn new things and wanted particularly to learn about how the kind of care provided for patients at home might ultimately be transferred to the hospital setting. Care that offers more dignity and privacy for patients, such as letting patients sleep when they need to; or even wear their own clothes; and making it easier for family, friends and caregivers to visit any time and stay overnight if need be.

“It would be great to go back to a hospital and say, how can we make things better?” she said. “Creating a balance of comfort and quality care.” Even making the decision not to wake people in the middle of the night would be an enormous change, she pointed out.

We also talked about the ideal of the team approach in palliative and hospice care, where physicians and nurses work closely together in an atmosphere of mutual respect. (I’ve interviewed a number of such teams and, like proverbial married couples, they often do finish each other’s sentences.) In a hospital setting, Theresa noted, “communication between physicians and RNs often is not what it should be.”

She’d like to see more inter-professional training focusing on better communications so that “we could view each other as people and understand each other’s roles and responsibilities, and the pressures on each of us.”

There is no doubt in my mind that Theresa will keep learning – and educating us along the way – and that she’ll continue to make a difference in reaching the goal of improving patient care. In the meantime, you can order books, read her columns or join her mailing list at http://www.theresabrownrn.com.