Tag 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.

Connecting Musically: A Volunteer’s Memoir

There’s no dearth of books, articles and blog posts or films, documentaries and videos about elderhood, serious illness and end-of-life issues, but I’d never come across any from the perspective I know so well: that of another hospice volunteer. So I was eager to read Steve Litwer’s new book, “The Music Between Us: Memoir of a Bedside Musician.”

The fact is, being a hospice volunteer is not a group enterprise; the reason you visit a seriously ill person is to offer friendship and comfort to him or her, and by extension to a person, or people, who care for him or her. But you do it alone, not with a gaggle of other volunteers or hospice staff with you. So I was eager to read this book to do a virtual kind of  “comparing notes,” to learn how the author related to and learned from the people he’d come to know, how volunteering has affected him, as well as to see how another hospice organization in another part of the country does what it does.

The book offers all that. It depicts many special moments between the author and the people he visited that resonated with me, which itself was welcome particularly at a time when the pandemic has made it impossible for volunteers to continue doing what we do, much less talk to one another about it. But you don’t need to be a volunteer or extra-curious about what that entails to read it. The book is a well-written, sometimes harrowing and very personal perspective on pain, loss, healing, forgiveness, wisdom and the search for a higher purpose. Plus, there are great songs built into the story. These are also available for listening on the author’s website.

The book is a memoir of Litwer’s long journey from an extraordinarily difficult childhood to often turbulent times of his own adulthood to a spiritual pilgrimage that eventually led him to fully embrace Christianity. His matter-of-fact style in relating his own shortcomings seems to expect neither excessive sympathy nor absolution from the reader. Each chapter starts with a vivid written sketch of an individual he has played guitar for and like a jazz riff, moves on from there to relate to relevant pieces of his own evolution.

Litwer became a bedside musician after retiring in his early sixties. He writes that when he started, “I slowly learned to become vulnerable with [the dying]…Participating in one of the most tender moments of others’ lives through songs and companionship would often leave me also feeling this way. It was in this state, that I experienced the slow emergence of pieces of my own past, percolating up through lost times of my own life.”

 After I read the book, I was glad for the opportunity to ask Litwer a few questions as a follow-up. Some highlights:

How have things changed for you since the pandemic began?

I have not visited a client since March of 2020. That’s when most activities for hospice volunteers abruptly ended. (I did record some video of my guitar playing which was sent out by one of the two hospice agencies where I volunteer.) As the Covid-19 numbers accelerated, I like so many, contemplated my own experience of isolation. I thought about how much more difficult that was for patients dying alone, without the in-person presence of friends and loved ones. Some of this became reflected in the book before it was published.

How do you deal with the reality that you can connect more with some people than with others?

If I am going to be of any value to the clients I visit, it’s incumbent on me to make the effort to connect in any way possible —  to be in their space — through friendly small talk or just being a calm presence. I try to remember that I am not there to fix them and that I certainly can’t cure them.  I also accept that I am going to connect with some folks more than others, especially if we have something common in our backgrounds or our personalities are simpatico.

Fortunately, this becomes easier with all types of folks, given that the music I bring can serve as a great bridge between us. That is, if  I’m creative enough to quickly discover what songs touch them. Although I am a child of the 1960s steeped in the music of that era, the great American music catalogue is so broad and deep, with so many iconic songs that are familiar to most people, there’s much for everyone to enjoy in just about any music genre. One doesn’t even have to be a musician to create meaningful musical connections. Music helps to open a personal connection with patients, even if they cannot verbally communicate with me.

How do you take care of yourself if or when the sadness or gravity of the work affects you?

At times, I do find myself sad after witnessing someone decline and pass away. Here’s what helps me: prayer – for myself and the client before or after a visit. Also, meditating on the idea of non-attachment to one’s environment and the suffering of others, which can be challenging. Since I was writing my memoir through much of my pre-pandemic volunteering, that became a sort of contemplation of both life’s sadness and joy. The book was an outgrowth of the journaling I did following most client visits. It’s a great tool for self-expression and then ‘letting go.’

 Do you share experiences with other volunteers? Is there any formalized way of providing support to volunteers?

The easiest thing might be organized live streaming video calls using platforms like Zoom, moderated by a hospice Volunteer Coordinator. However, I have not seen that.

While speaking with various leaders at local hospice agencies about my book, one came up with the idea of creating a sort of book club for volunteers, using “The Music Between Us.” The idea was to provide them the book and then host a discussion group on a Zoom call. I would join the call also to take questions about the book.  I think creative ideas like this, using video technology can carry over, even after we move beyond COVID restrictions.

           And on that note…here’s a link to Steve Litwer’s website and book.

Talking About….Life, Ageism, Death and Everything in Between

Had a wide-ranging conversation about how the media portrays (or doesn’t) elders, serious illness; how people misunderstand palliative and hospice care; and lots more on Barry Lynn’s “Culture Shocks” podcast.

You can listen to our half-hour conversation in the second half of the podcast.

Yea or Nay on Medical Aid in Dying?

Hawaii has become the latest state to enable medical aid-in-dying, and  public opinion has been shifting more in favor of it in the past couple of years.  It’s still an enormously controversial subject and too often advocates on both the “pro” and “con” side shed more heat than light on it.  I wrote this blog piece for http://sixtyandme.com in hopes of providing a little light.

Spoiler alert: I am opposed to medical aid-in-dying. Not for religious reasons, or because it violates the medical principle of “do no harm” or even because of fear of the “slippery slope” that would harm the most vulnerable among us.

In short, it seems to me that this evolution is more of a striking and continuing indication of the sorry state of end-of-life care currently, than it is a rational health care solution for those suffering terminal illnesses.

You can read the piece here: http://sixtyandme.com/exploring-both-sides-of-the-physician-aided-dying-conversation/

A Virtual Walk in Others’ Shoes

It’s such a topsy-turvy world right now that if you’re like me, it might take more than a little time spent viewing cat and puppy videos to elevate your mood. So I’m glad to share the story of Embodied Labs.

When I think about the future of health and wellness care for elders, one looming issue is how we can attract a broad and well-trained workforce to understand and help us through a gauntlet of serious illnesses or chronic conditions. So it is enormously heartening to learn about a group of young professionals who have dedicated themselves and their business to this work.

If compassion and kindness are rooted in the ability to “walk a mile in someone’s shoes,” Embodied Labs – which didn’t exist until 2016 — gives that dictum the ultimate technological boost. In short, it sits at the intersection of health care training and virtual reality storytelling.

Embodied Labs is a for-profit corporation, but it is very mission driven, according to Erin Washington, co-founder and head of customer experience. “We’re helping to build the world we’d like to see when we’re older,” she told me, adding that “we don’t consider ourselves a VR [virtual reality] company. We’re using VR because it’s the best solution to achieving the outcomes we’re aiming for.”

Washington’s professional background is in curriculum development. Carrie Shaw, CEO and founder, got her Master’s degree in biomedical visualization (which was once called medical illustration) in 2016. But it was their experience as family caregivers that provided the impetus for creating Embodied Labs.

Shaw tells the story about how she became a caregiver for her mother, diagnosed with early onset Alzheimer’s, and who also struggled with macular degeneration. She created a tool – a simple pair of eyeglasses with patches in two different places – to give her mother’s aides a sense of what it was like to see the world from her mother’s perspective. What if you could use science, storytelling and virtual reality to convey the experience of an aging person? Would that help health care providers, be they professionals, direct care workers or family members, become more effective and better at communicating, in their caregiving efforts?

Embodied Labs uses film combined with interactivity that literally enables a person to walk in the shoes of a person with serious health issues. So far there are three “labs” available to the company’s subscribers: “Alfred,” a 74-year-old African-American man who suffers from macular degeneration and hearing loss; “Beatriz,” a middle-aged Latina woman who has been diagnosed with early Alzheimer’s disease; and “Clay,” a 66-year-old veteran who has been diagnosed with Stage IV lung cancer and faces end-of-life issues and participates in hospice care.

Voice interaction is one element in the Beatriz Alzheimer’s lab. At one point, a person “embodying” Beatriz is asked to read a few sentences; but the words come out garbled and make little sense. It conveys what it might feel like to try to communicate but to be unable to express what you mean.

For the Clay end-of-life lab, Washington’s research included spending two days in a hospice facility, shadowing members of the hospice team. The lab’s credits list 75 people, including actors, those who worked in production, post production and subject matter experts.

Creating a lab is a research and labor-intensive process. Once a topic is decided upon, staff members talk to subject matter experts as well as family members, then decide on learning outcomes they want to achieve. All of that goes into script writing. Then the film is produced.

The Alfred lab, the company’s first, was created by an interdisciplinary team, with content experts from the University of Illinois Chicago, University of Illinois Urbana Champaign, Wake Forest School of Medicine and North Carolina School of the Arts, with representative input from students and experts in the fields ranging from biomedical visualization to geriatrics and health informatics systems. (A white paper detailing the impact of the lab on 200 second-year medical students at the University of Illinois-Chicago in October 2016 is available on the company’s website.)

At first, the company’s subscribers were mostly in academia. But now it has long term care and home health care companies on board. They’re also in talks with nonprofit organizations and with individuals who do corporate training; public libraries and Alzheimer’s groups represent other potential subscribers.

Looking ahead, Washington believes that in 2019 virtual reality will be more available and affordable for consumers, which could be a boon for family caregivers. And while Embodied Labs is focused on aging issues now, the company is looking at experiences of other vulnerable populations too.

“We try to explore difficult subjects, not skills-based training,” Washington said.

So far, the company’s labs have focused on what happens to a person in his or her home setting. The next lab will focus on the transition from living at home to a skilled nursing facility. It will likely include such elements as difficult conversations, the family dynamic, how long-term care can meet a need, what’s different about an institutional setting.

Washington told me that “I would have laughed three years ago if someone had said you’d be starting a company.”

And I’d say, we should all be glad that they did.

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

 

“Meeting the Registrar”

I recently came across this short poem on Twitter; it was written by a 99-year-old woman, a former nurse herself. I thought it was so wonderful that I’ve now used it several times to introduce my talks about late-life care and advance care planning. Since people have been requesting copies, I thought I’d share it here. What do you think?

Meeting the Registrar

As I would like to leave at ease

No intravenous feeding please

No pump imparting partial life

No last ditch using of the knife

When coma comes just let me slide

Unhindered to the other side

I want no plastic tubes to mar

My meeting with the registrar

 

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

extremispic

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.

Saluting an Unlikely Hero

WeatherChannelpic copy

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.