Steve interviews Ellen Rand – long-time hospice volunteer, author, public speaker, health care journalist, and patients’ rights advocate. 2021 marks the fifth anniversary of her 2016 landmark book, “Last Comforts: Notes from the Forefront of Late Life Care.”
In early 2017, I was just beginning my service as a hospice volunteer and bedside musician. One of the first things I did was to search for books on the subject, figuring that some who had already blazed this path probably wrote about the experience. I found very little. Most of the books I found were very dated or did not have what I was seeking – a comprehensive look at volunteerism in hospice with a particular focus on the personal experience of being with people as they are dying. I was seeking to learn about the particular dynamics of those relationships and what made them important for both patients, their families, and the volunteer.
At about the same I was beginning my own journey, Ellen Rand, a seven-year hospice volunteer and former New York Times columnist, had recently published “Last Comforts.” Today the book is a must-read for volunteers, end-of-life professionals including gerontologists and hospice medical directors, educators in the field of end-of-life care, and families navigating the maze of information about hospice. Perhaps most importantly, it is also for patients seeking to make their own decisions about what the end of their path might look like for themselves. Beyond that, she looks at how all the components of end-of-life care can be improved, from both public policy, medical and humanistic standpoints. It covers such issues as medical and nursing education, dementia care, long-term care alternatives, and challenges faced by minority, gay, and transgender populations. The book is easily comprehensible for both the layperson who is simply trying to figure out how to care for a dying loved one as well as the health care specialist. “Last Comforts” was a Silver Medal Finalist in the 2017 Independent Publisher Book Awards.
Steve: Why did you write Last Comforts?
Ellen: The book grew out of one basic question that kept nagging at me not long after I became a hospice volunteer: Why do people enter into hospice care so late in the course of their illness? So late that they don't have the chance to take full advantage of all that hospice offers. So late that there isn't sufficient time to develop the trust, ease, and, yes, friendship that can provide great comfort for the ill and their families experiencing what is likely the biggest challenge of their lives. Call it curiosity, call it frustration, call it exercising a reporter's muscles, this question drove me to begin researching the current realities of end-of-life care. I wanted to learn: how can we do this better?
Steve: Early in the book, you provide a demographic snapshot of why this is such a timely subject. You stated, “As the baby boomer generation lurches--sometimes kicking and screaming--into old age, ten thousand of us become eligible for Medicare each day. By 2030, one-fifth of the population will be 65 and older, compared to 13 percent in 2015. The fastest-growing population--the "oldest old," 85 and older--will number nine million by 2030, more than double their number in 2015. By 2050, the number of Americans requiring long-term care is expected to more than double from 13 million in 2000 to 27 million.” Why is this so relevant?
Ellen: An optimist by nature, my goal is to look to the pathfinders and innovations in caring for people with advanced and life-limiting illnesses to learn how the future might be dramatically different for the coming wave of aging baby boomers.
Steve: Your section in the book, "Debunking Some Myths About Hospice" is a great primer. I certainly didn’t know most of this when I first started volunteering. Can you through them briefly?
“1. Myth: Hospice is a place. Hospice services and benefits are available wherever people are most comfortable and for most, that means their own homes”
“2. Myth: If you choose hospice care, it means you’re giving up on life and hope. Hospice care aims to enable you to live the fullest and most comfortable life possible, as long as possible. ”
“3. Myth: Hospice is only for cancer patients. Although it had its roots in caring for advanced cancer patients, hospice care is appropriate for people with any type of life-limiting illness, such as heart failure, COPD, kidney failure, or advanced dementia. ”
. “4. Myth: Once you make the decision to enter hospice care, you cannot change your mind. You can opt-out of hospice care at any time. So if you decide to try the curative treatment, for example, you may leave hospice care. And you can decide to be readmitted later on after you’ve opted out.”
“5. Myth: You will be discharged from hospice care if you live longer than six months. As long as hospice can certify that your illness is still fatal and that you continue to decline, you can be re-certified for additional hospice care.”
“6. Myth: Only Medicare-eligible people enroll in hospice. [Medicare paid] Hospice services are available for people of all ages, including, sadly, children with fatal diseases. Medicare pays for hospice benefits, including visits by nurses, health aides, social workers, and chaplains, plus drugs related to the illness and equipment, such as commodes and hospital beds, that people may need. Many health insurance policies for those under age 65 offer similar benefits. Medicare also pays for hospice services in assisted living and nursing home settings, although it does not pay for your rent or room and board.”
Steve: You make it clear in the book that there is plenty of confusion about the difference between hospice and palliative care. Can you tell us?
Ellen: Palliative care focuses on addressing pain (physical, emotional, and even spiritual) and maintaining a patient's quality of life in cases of serious illness. It's about designing care that aligns with your values and provides comfort. You do NOT need a terminal diagnosis (as you do with hospice) and you can receive curative treatment at the same time. As Diane Meier, MD, head of the Coalition to Advance Palliative Care, has said, all hospice care is palliative care; not all palliative care is hospice care.
Steve: One of your biggest criticisms centers on the divide between curative and comfort care.
Ellen: Absolutely. There’s still that demarcation. That is, as long as you're being treated for an illness (aiming to cure it), you are not eligible for hospice care and vice versa. Care should be "and" instead of "or" but that still seems like a long way off. In the meantime, if you or a loved one’s pain or suffering is not being addressed by your medical team, you can ask for a palliative care consult. You don’t have to wait for it to be offered to you.
Steve: I assume end-of-life care has been dramatically impacted by COVID. How has public policy – its strengths and shortcomings - impacted care in today's pandemic environment?
Ellen: Regardless of COVID, public policy around end-of-life care hasn't changed much in five years. Compensation and reimbursement haven’t changed. Clinicians are still 'rewarded' financially for tests, procedures, and treatments, not for having an extended conversation about people's values and what they want for themselves if they become gravely ill. Geriatricians and primary care physicians are not compensated as well as specialists like surgeons or urologists, as an example.
Steve: Many hospices are losing volunteers in the new environment. As an active volunteer yourself, any thoughts on that? Realistically, can volunteers be of service if they can't make live visits?
Ellen: There's been no hospice volunteering [where I volunteer in New Jersey,] or at the [local] hospital either, for that matter, since March of 2020. Its freestanding hospice facility is closed now for renovations, and we can't visit people in their homes or in long-term care facilities. So, it's awfully difficult. And even if we could: a big part of what we do is high-touch -- we're big on hugs, holding people's hands, getting close enough to listen if they can't speak loudly or hear well. So that's all gone, which is awful. I don't know if anyone is making regular phone calls or video visits with patients, but I imagine that would be a possibility.
Steve: “It takes a Village to Care for Our Elders.” Can you provide any new thoughts about that statement which you used in the book?
Ellen: I think the pandemic has shown us how harmful isolation is physically and emotionally. From a practical standpoint, it has prompted solutions around grocery delivery and transportation to doctor's appointments. One of [the] biggest challenges is trying to reach out to isolated elders and making them aware of social services that might be available to them. I think some nonprofits are addressing isolation by doing "phone buddy" programs, where volunteers call folks on a regular basis just to chat. But as far as coordinated care is concerned, I don't see much happening. If you have a serious illness, it's still hard to figure out who's the quarterback (i.e., who's in charge of directing care). So, mostly it's you or your caregiver.
Steve: Any new hospice organizational best practices that you've observed as a result of the pandemic issues?
Ellen: Probably the best thing is more acceptance of telemedicine, though I'm not sure about how well Medicare or Medicaid reimburses doctors for it. And there's a COVID-inspired toolkit from Coalition to Advance Palliative Care. And more use of tablets for enabling communication between family members and patients, as unsatisfying as that is. Generally, as I wrote in a recent blog piece ( Click Here, ) the pandemic has meant more in-your-face awareness of mortality and made it OK to talk about it, which is not a bad thing. I think physicians are becoming more aware of how they have to get way better at communicating with patients and families, especially when the news is not good. I also think that the pandemic has shown us some of the inequities in care with minority populations. I see that a number of minority physicians and nurses are becoming more vocal in advocating for better care and calling out bias when they see it and that's a good thing.
Steve: What about technology advances and adaptation since the book was published? Are you seeing anything new or effective?
Ellen: Telemedicine, which has been especially helpful in rural areas where people may not have easy access to nearby health care. And I think we can look to Apple for even more wearable health monitoring devices. I'd look to more impact of robotics. In nursing homes, I've seen so many people holding dolls, or plush toy animals, for comfort, and I don't think it's a far remove to imagine robot companions that respond to touch and speech. Japan has been at the forefront of this.
Steve: Ellen, Thank you for revisiting the book with me and our readers. Any last piece of wisdom you might like to share with us on any of the book's themes?
Ellen: None of us come into this world knowing how to deal with a loved one's grave illness and death. There can plenty of fear, plenty of second-guessing yourself, plenty of confusion and conflict about care. Fortunately, the professionals in hospice care -- including nurses, social workers, chaplains, and volunteers -- are there to support us through what is probably one of the toughest times in our lives. Do accept their help and guidance when you need to.
Last Comforts: Notes From The Forefront of Late Life Care is available on Amazon
For more by Ellen Rand, go to her blog. http://lastcomforts.com
Special Note: Ellen will also be interviewing me about my book, “The Music Between Us: Memoir of a Bedside Musician” on her blog later in January. http://lastcomforts.com