Ep 09: Is Our Culture Dealing Properly with Dying?
Death and dying are difficult subjects for most of us. Yet how our country deals with these issues might inadvertently hurt how health professionals approach end-of-life care and serious illness, all of which incur a significant cost.
In the ninth episode of A Question of Care™, Robert Espinoza speaks with Dr. Joseph Shega, Chief Medical Officer at VITAS Healthcare and Co-Managing Editor of Essential Practices in Hospice and Palliative Medicine. They touch on our country’s relationship with death and dying and how a different approach to these topics would improve the end of life for millions of Americans.
Robert Espinoza: How did the wealthiest country in the world get to a point where it can't support the health and long-term care needs of more than 54 million older adults? Welcome to A Question of Care™, a podcast that explores the many answers to this question through different viewpoints and topics. I'm your host, Robert Espinoza, a national expert and frequent speaker on aging, long-term care, and the workforce.
in this episode, we'll delve into the culture, perspectives, and practices related to death and dying in the U.S. Joining us is Dr. Joseph Shega, a professional with more than two decades of experience in this field who will be our trusted expert as we navigate this topic.
Dr. Joseph Shega: I am Joseph Shega. I am the Chief Medical Officer for VITAS Healthcare.
Robert Espinoza: People in this country view death and dying from a range of perspectives, often reflecting their cultural, spiritual, or scientific viewpoints. While attitudes toward death vary widely, there are some overarching trends that we should explore.
Dr. Joseph Shega: So, over the 25 years, I would say the one thing that's remained consistent is death and dying still seems to be a taboo topic. People still don't feel comfortable talking about something that's gonna happen to all of us. So we continue to work hard every day to engage in conversations and normalize the conversations, recognizing that for better or worse, we're all going to face serious illness and end of life, whether it's our parents or ourselves or other family members or friends.
And so being open and having honest conversations and normalizing those conversations is our hope to try to continue to get people more comfortable talking about it, with the whole goal of honoring people's wishes and values and making sure their care is consistent with what they want.
Robert Espinoza: One of my favorite books on this topic is Being Mortal by Dr. Atul Gawande, and in it, he writes, “Scientific advances have turned the processes of aging and dying into medical experiences, matters to be managed by healthcare professionals.” He adds, “Our reluctance to honestly examine the experience of aging and dying has increased the harm we inflict on people and deny them the basic comforts they most need.” How do you think modern medicine is helping people, and how do you think it's hurting them when it comes to death and dying?
Dr. Joseph Shega: So, modern medicine has come up with some amazing approaches to treatment that have transformed care for certain populations. Obviously, cancer is one that readily comes to mind where, when I trained at University of Pittsburgh, survival rates for many cancers like lung and colon were six to 12 months. And those survival rates have doubled, tripled, quadrupled with some of the innovations that have happened in tumor-directed therapy. So there's been some great advances.
But despite those advances, cancer is still the second most common cause of death in the United States. So even with those great innovations and prolongation of life and hopefully prolongation and quality of life, people still die from the same chronic illnesses they did 30 years ago: heart disease, cancer, lung disease, dementia. And so, despite those great advances and improvements in quality of life, people are still dying from those conditions.
And we need to continue to remind our partners that we appreciate all the advances that they're making, but at the same time, you have to have conversations about expectations and what the future will look like.
And I often like to use my dad as an example. He was diagnosed with metastatic colon cancer. I had very realistic conversations with him, my mom, and my siblings about what to expect. And at that time, the average life expectancy was two years. Having those conversations, he responded to first-line anti-tumor treatment, and he was on first-line anti-tumor treatment for 11 years. And now he's too sick to tolerate first-line treatment. And so now we talk about end of life more, and he himself made his decision to not be resuscitated the last time he was in the hospital, which surprised everybody but me. But everybody understood and accepted because we've had those conversations and, with each setback, what those setbacks meant.
So, it's just important to remember with those advances, we need to continue to recognize people who are dying from those conditions and continue to have those conversations when the natural history of the disease progresses, despite those treatments, what it means, and what the future will look like. And for everyone, hopefully, that future will be hospice care because it improves quality.
Robert Espinoza: One of the leading causes of death that has emerged in recent years is COVID-19. In fact, the data shows that as of June 2023, the COVID-19 pandemic has claimed more than 1.1 million lives in the U.S. and almost 7.7 million globally. Though some experts say that those figures are actually closer to 15 to 20 million.
What has this pandemic taught us about serious illness, death, and older people in particular?
Dr. Joseph Shega: I think it was a wake-up call for many that, at any time, we could transition from healthy to serious illness. And that at any time, we can become seriously ill and could impact and take our life. With that, what we've noticed is that more Americans seem to be open to talking about wishes and values in advanced care planning.
We did a survey that showed one in five respondents to the survey actually had loved ones who died from COVID, and they did not know their loved one’s wishes and values. And that was a wake-up call for them and an opportunity to start having those advanced care planning conversations.
Robert Espinoza: Joe, you graciously shared your story about your father. Are there any personal stories from your career that illustrate the complexity of dealing properly with death and dying?
Dr. Joseph Shega: So, that's a great question. I would say, in aggregate, what they have taught me is that what people want at the end of life is so individualized.
The most important thing to remember when we talk about end-of-life care is to create individualized plans of care and make sure that it's not a yes/no when people think about hospice but how can we meet them where they are, to help them transition and understand that they're suffering from life-limiting illness? And how can we focus on optimizing life and making life as good as it can be for however much time they may have left?
A perfect example was when we had a gentleman come to our inpatient unit. At VITAS, we're often the second, third, or fourth hospice people choose because people often have preferences, but the care they want isn't consistent with what that hospice was willing to provide.
So this was somebody who had had metastatic rectal cancer. He was in his 50s. He was married. He had kids that were teenagers. He had progressed through four lines of antitumor treatment. He had a large rectal abscess. He was bed-bound. He had just had a bilateral pulmonary embolism. He was very short of breath on oxygen, on three or four IV antibiotics, and completely deconditioned. And his goal was to try to get stronger and tolerate more antitumor therapy.
Everybody knew that was not possible. He had been turned down by an LTAC. He had been turned down by multiple skilled facilities. No home health provider would sign up for him. Two other hospices had said no because his goals weren't consistent with the care that they wanted to provide.
Clearly, there was a lot that needed to happen because when I saw him, his life expectancy was days to a week at most. But we were able to get him to the inpatient unit, continue the IV antibiotics, control his mixed nociceptive neuropathic pain from the infection invading and the tumor invading some of his nerves. And get him and his family to recognize that he was dying. And that we could honor his wishes in that he didn't die in the hospital. What that looked like may not be what he initially envisioned, but in the end, he had closure, his family had closure, and no doubt completely changed the bereavement for his wife and kids.
And so, how I started about creating those individualized care plans, right? End-of-life care isn't always perfect, but we do the best with what we have to help people understand what's happening to them and make sure that their wishes are honored.
Robert Espinoza: Joe, you mentioned the concept of hospice care earlier, and I find that people often confuse hospice care and palliative care. Can you help us understand—what are the key principles and goals of hospice care and palliative care and how are they different?
Dr. Joseph Shega: Yeah, that's a great question, and often, people confuse palliative care with hospice care. So, I like to think of it simply. Hospice care is palliative care in the last six months of life and is a defined benefit by Medicare. It covers medications, equipment, an interdisciplinary team, a physician, a nurse, a social worker, a chaplain, a volunteer, and a health hospice aid—all there to try to create a care plan to meet one's wishes, values, and goals. Decades of research show it helps improve quality of life while decreasing costs for the patient, the family, and the health care system.
Palliative care has been around more recently in the last 10 or 20 years. I think of palliative care as for people who have serious illnesses, but the prognosis is greater than six months. The challenge in the United States is it's not a defined benefit. So, if you've seen one palliative care program, you've seen one palliative care program, and the services that they offer are quite varied. Some may be a physician, some may be a social worker, and some may be a nurse. But what they provide is very different.
Most insurers don't have a defined palliative care benefit, or if they do, it's very limited. That just leads to a lot of confusion among families as well as healthcare clinicians because they don't understand the difference. Unfortunately, what's happened is so often now, healthcare professionals will refer to palliative care instead of hospice when people need hospice, and they're not matching the services with what they need. And so that's one gap that has widened, and my hope is that if CMS can come up with a palliative care benefit, it will help people with serious illnesses, pre-hospice, and then that transition to hospice to provide the best and end of life outcomes.
Robert Espinoza: You've hinted at some of this, but what are some specific barriers that patients and their families face when they access hospice care or palliative care services in this country?
Dr. Joseph Shega: Yeah, for hospice services in particular, one of the challenges is not all the services that they provide are the same. So, by law, all hospices must be 24/7, 365-coverage, meaning available any time, day or night, to support the patient and their family. They must include the core disciplines—physician, the nurse, social worker, chaplain, bereavement services, and volunteers. They have to pay for medications and equipment, but then, after that, hospices are very different in their philosophy and approach to care. Neither one is necessarily right or wrong, right? It's just how they envision the Medicare hospice benefit.
And so at VITAS, we're very open to things like antibiotics, IV fluids, tube feeding, high-flow oxygen—some of the more complex things that patients may need to support their end-of-life journey.
Whereas other hospices may not be as open to some of those treatments. It doesn't make it good or bad, but there's such variability in the type and approach to care. At the same time, CMS doesn't adjust for acuity and complexity when it looks at hospices, which leads to further confusion about what hospices can and can't do in the marketplace.
Robert Espinoza: In November 2022, ProPublica, an investigative media outlet, published an article that caused quite a stir within the hospice industry and the long-term care sector. This article shed light on the hospice care landscape, revealing how what was once a noble mission to offer dignified, end-of-life care had been tainted by lax regulations and profit-driven motives resulting in rampant fraud and exploitation.
Following this exposé, the four major hospice trade associations directed a memorandum to the Centers for Medicare and Medicaid Services, outlining 34 recommendations. These proposals advocated for more stringent regulations in areas such as ethical marketing practices, ownership transparency, comprehensive disclosure, and heightened scrutiny during the intake of initial patients, among other essential measures.
In light of these developments, I was interested to hear Joe's thoughts on where the hospice industry requires reform to restore its core values and ensure ethical, high-quality care.
Dr. Joseph Shega: So, while many people struggled with some of the things that the ProPublica article focused on, it did create this great synergy among the four organizations that you mentioned to step forward and lean into this is what we need as an industry to help ensure patients and families get consistent, high-quality end-of-life care. And so, to me, that's one of the big wins for an article that was very hard for some people to read when your whole life is focused on providing the best end-of-life care.
I think the common sense solutions focused more on newer hospices, making sure that they, in particular, meet the standards and policies set forth by CMS and ensuring that they're not able to be sold. People understand ownership is extremely important as a first step. Decades of research show hospices that have been around for over 10 years have superior quality and probably don't need as much focus as the newer hospices, ensuring that what the benefit was set out to do—improved quality—happens. I think that that approach makes sense, and the 34 measures put forth by the four organizations are a great first step.
Of course, there's a word of caution in that you don't want to overstep what should be done, which could lead to people being too cautious and not wanting to accept certain patients because of their acuity, complexity, or struggles with end-of-life care. And those patients and families may end up suffering an over-medicalized death, which would be a really bad outcome if there was too much over-regulation in how that looked.
But that's why the four groups set forth and leaned into what they think could improve hospices and make sure end-of-life care and the robustness of the benefits remain.
Robert Espinoza: You and I were on a planning committee focused on the serious illness workforce that was part of the National Academies of Sciences, Engineering, and Medicine.
How do we adequately prepare the entire workforce to meet the needs of people with serious illnesses?
Dr. Joseph Shega: So, the things that I focused on to help VITAS meet the workforce needs, not only of our organization but healthcare overall, are two main perspectives.
One is to be actively involved in the educational process of healthcare professionals. And so working with colleges, universities, and postgraduate education to be part of training the next generation of learners and leaders in health care is paramount. We have that opportunity to teach them, number one, what does interdisciplinary care mean? How does it change outcomes? Then, see the value of end-of-life care by better appreciating what an end-of-life care experience will look like.
The second is that so many high schools, colleges, universities, and even professional training require volunteer hours, and hospice is unique in that to be a Medicare-certified hospice, you must provide a certain amount of volunteer hours directed towards patient care. And so it creates this win-win opportunity where you can work with colleges, universities, and professional training schools to be the source where they can get their volunteer hours within hospice doing end-of-life care.
And so we've tried to create innovative programs for VITAS to support that—whether it's our VITAS individualized pampering program for patients to help define that individualized plan of care. Helping our volunteers work with patients and families to create life biographies. Most recently, we've been engaging with virtual reality and trying to leverage it to be a therapy that volunteers can provide for patients and families.
Getting volunteers involved from colleges, universities, and professional schools to understand end-of-life care but also to participate in that care to recognize the impact they can have.
Robert Espinoza: Joe, I want to get your thoughts about solutions to many of these problems and questions that you brought up. How can public policies and health care regulations be improved to enhance hospice care and palliative care services?
Dr. Joseph Shega: So, I think one of the main things when we look at policy and healthcare regulations is to recognize the research that's gone into establishing the Medicare Hospice Benefit. The Medicare Hospice Benefit was the first at-risk payment model for Medicare. Established in the 1980s, [this benefit] was passed into law under Ronald Reagan because it improved quality and saved money. It was the first value-based care model CMS had ever entered.
Despite that, patients continue to benefit from hospice services but for a very short period of time. The median length of stay in hospice remains around 18 days. That hasn't changed for decades. At the same time, only about 50 percent of Medicare beneficiaries ever benefit from hospice services. So that means half of patients who die that are older adults never receive hospice care.
So the real question is, how do we further integrate hospice into our healthcare system to encourage earlier access and greater access? Palliative care is part of that solution, as is continuing to double down on advanced care planning and the role of advanced care planning in understanding wishes, values, and goals.
And so I think those two things—investing in a palliative care benefit that's aligned to incentivize hospice utilization and, at the same time, increased advanced care planning and training the primary workforce in doing advanced care planning and having goals of care conversations.
And policies and regulations that encourage those things will provide a great solution to expanding the hospice benefit and improving end-of-life outcomes.
Robert Espinoza: It seems that our ability to pass these types of policies relies in many ways on our ability to discuss death and dying in ways that are productive and constructive for our families and our lives. How can we promote open and honest discussions about death and dying within our families, within communities, and within healthcare settings to foster a more compassionate and understanding approach?
Dr. Joseph Shega: So, it's a really interesting point you make in that there's so much fear and anxiety that comes with engaging in goals-of-care conversations and end-of-life discussions.
I mentioned earlier that one of the keys is to normalize it. When I had my geriatrics practice, I spent a lot of time in the memory disorders clinic—and so diagnosing many patients with neurodegenerative diseases that were progressive, not curable, and ultimately fatal.
As part of that process, the initial piece focused on diagnosis and treatment. And it just wasn't about disease-modifying therapy, which is very limited. But it was also about understanding what was important to people and taking the time when people had mild dementia to complete an advanced care plan. And then, along the journey, talk to families about the goalposts of decisions that will be coming up, what end of life will look like, and when hospice will be needed.
And so if we normalize that process as part of the care continuum, then there's less shock when it comes up when people are near the end of life. So, to me, the most powerful way is to encourage healthcare professionals to incorporate it as part of the disease management trajectory. Now, we're focusing on this. This is how we know disease will progress. Ultimately, it may become end of life. And when that happens, this is what we're going to do.
Robert Espinoza: Joe, let me ask you one final question. If you had all the power in the world, what would you change about our end-of-life care system?
Dr. Joseph Shega: If I had one wish about our end-of-life care system and how to make it better, it would be to get people to understand that end-of-life care is still about life.
We don't focus on death. Death is going to happen whether or not somebody enrolls in hospice. And studies show hospice care doesn't change life expectancy. One study showed you might live a little longer. Others show no difference. But in the end, end-of-life care is about life.
It's about embracing life. It's about making the best of whatever time we have left. And how do you want to spend that time? And then let's put a care plan together to try to make that happen.
If I could change one thing about our system, it would be to change the outlook about what hospice and end-of-life care is. To not make it about dying but to make it about living until death occurs.
Robert Espinoza: In early 2016, at age 39, I experienced a severe heart attack that nearly ended my life. One minute, I was walking near Prospect Park in Brooklyn, New York, and a week later, I was waking up in a hospital nearby from a weeklong coma. I was being told I had gone into cardiac arrest, and I was lucky to be alive.
My heart had stopped for a whopping 45 minutes, and an EMT had kept my brain functioning through CPR. Three weeks later, my heart surgeon told me I had a 6 percent chance of surviving at the time of the attack. I would spend much of that year coming in and out of hospitals and medical appointments, my brain fogged with uncertainty.
An expert in near-death experiences once told me that the two biggest questions facing people who go through these moments are: Why me and why did I survive? And what did I see when I went under, into that space near the beyond? In truth, I don't remember what I saw in those 45 minutes. And if I did, I erased it from my memory.
But what I've seen in the years after this near-death experience is a care field that struggles with its relationship to death and dying. Like many others, I routinely question where healthcare professionals, thanks to advances in medical technology, are crossing the line in keeping people alive beyond their preferences or even quality of life, which can vary from person to person.
Suppose we genuinely embrace our life as finite and our experience on this planet as microscopic, relative to the age of the universe. Would we embrace the here and now and take death and dying as a natural given? Would we transform our billion-dollar healthcare system and shift our national funding priorities from unnecessarily prolonging lives to creating an affordable, person-centered social safety net that embraces a natural life and death?
As for the question, why me? I'll never fully know the answer, but that might be the point. Because why not me? And regardless, isn't it a better use of energy to imagine a better life and death for all of us, irrespective of our circumstances?
Thank you to my guest, Dr. Joseph Shega, and to you, our listeners. If you enjoyed this episode of A Question of Care, please share it on your social channels and stay tuned for future episodes. This podcast was produced by me, Robert Espinoza, in partnership with Modry Media. Please make sure to rate and review the podcast wherever you're listening.
This transcript has been slightly edited from the original episodes to improve readability and accessibility—while preserving the guest's authentic voice and conversational style.