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Welcome to No One Gets Out of Here Alive. In this series, Clemson University's Tracy Fasolino explores the role of policy and legislation for palliative and hospice care.
Health Affairs Pathways explores the avenues and alleyways of the health care system through a variety of storytelling – from investigative journalism and health policy explainers to long-form interviews.
Unique series are created by fellows at Health Affairs Podcast Fellowship Program, designed to support early to mid-stage professionals pursue an audio project, tell a unique health care story, and highlight voices that may not be heard otherwise.
Join the Health Affairs Podcast Fellows on their journey to unearth a new health care story on such topics as health care consolidation, independent primary care, behavioral health, climate change, health equity, and more.
Health Affairs, the leading journal of health policy research, offers a nonpartisan forum to promote analysis and discussions on improving health.
00;00;00;19 - 00;00;34;27
Dr. Tracy Fasolino
About 60% of us have at least one chronic or serious illness like diabetes, heart disease, cancer. And some of us have multiple health conditions. So we're talking about 133 million people, including children, diagnosed with some type of incurable condition. And that number isn't shrinking. In fact, it's expected to grow to 157 million. Research suggests that these folks with ongoing illnesses have a lot of unmet needs. The physical, psychological and spiritual.
00;00;35;14 - 00;00;59;22
Dr. Tracy Fasolino
How are we going to meet their needs? And where do people go to get help? Well, the role of palliative care and hospice services are intentionally designed to meet these needs from the onset of the illness through to the end of life. I know firsthand of the struggles these patients and their caregivers face on a daily basis. I'm totally sold out on the benefit of palliative care and hospice services.
00;01;00;21 - 00;01;23;25
Dr. Tracy Fasolino
My name is Dr. Tracy Fasolino. I'm a nurse scientist and a board certified hospice and palliative care nurse practitioner. I've been working at the bedside for over 20 years and I understand the clinical management for palliative care and hospice services. But what I really wanted to understand better is how legislation and policies from the past are impacting present day delivery.
00;01;24;16 - 00;01;56;26
Dr. Tracy Fasolino
Now, this podcast will tell the story of legislation that brought hospice and palliative services into being through the lens of a nurse caring for these patients, kind of a boots on the ground implementation of policy. For Health Affairs, you're listening to “No One Gets Out of Here Alive”, where we take a closer look at how each of us would want care to be provided to ourselves or to our loved ones when we're dealing with an ongoing illness.
00;01;57;11 - 00;02;17;24
Dr. Tracy Fasolino
There is one thing we all have in common, and that's our mortality. So I'd imagine you're already having some emotions stirring with the use of the word hospice and palliative care. Nearly all my patients say the first thoughts that come into their mind is, “Am I dying?” You know, it's a tough subject to bring up, to talk about, or even doing a podcast on.
00;02;18;13 - 00;02;46;27
Dr. Tracy Fasolino
We tend to avoid the topic of our declining health and death and dying. But the data suggests at some point we're going to be faced with an ongoing serious illness which is going to prevent us from living our lives to the fullest. And we might even be diagnosed with some type of life limiting condition. If we don't talk about our pain and suffering or what we might want in our last days, we'll miss out on learning about some of the services that are available to us or our loved one.
00;02;47;17 - 00;03;10;10
Dr. Tracy Fasolino
Now, the two dominant methods for navigating through a chronic or serious illness are palliative care and hospice services. Now, this hasn't always been available. It wasn't until 1982 that the Medicare benefit for hospice was signed into legislation. So what was care like before the hospice benefits?
00;03;16;09 - 00;03;44;12
Dr. Tracy Fasolino
Dying in America during the 1960s and seventies was heartbreaking. Cancer, that dreaded disease that would cause fear and an overwhelming sense of hopelessness. Our society moved dying at home, and kind of surrounded by our loved ones or family or friends, into the hospital, isolated and alone. And attempt to try one more round of chemotherapy or some other experimental treatment.
00;03;45;10 - 00;03;58;24
Dr. Tracy Fasolino
In fact, at the end of the 1950s, over 60% of all deaths actually occurred in the hospital. Now, in the hospital, dying became more technical and the care decisions were placed on the medical teams.
00;03;59;24 - 00;04;14;12
Elisabeth Kübler-Ross
It's a serious disease taking on such extreme forms. You can imagine that the patient himself, who is dying suffers tremendously and this is something we see in the hospital every day.
00;04;15;03 - 00;04;39;24
Dr. Tracy Fasolino
The voice of beloved Elisabeth Kübler-Ross, sharing her insights. She would go on to publish a number of works on death and dying During the 1960s, disease was actually viewed as a problem that needed a solution. Doctors were reluctant to admit when treatments weren't working and then struggled to tell patients and their loved ones that any type of further treatment might actually do more harm than good.
00;04;40;29 - 00;05;09;28
Dr. Tracy Fasolino
Nurses helped highlight the needs of dying patients through work funded by the US Public Health Service Division. We were able to document the stark realities of institutional dying. Basically, that patient dying at the end of the hallway in pain. Nurses helped actually reverse this downward spiral of suffering. You know, our education has always been focused on holistic care, including the ethical and spiritual issues related to death and dying.
00;05;10;13 - 00;05;36;10
Dr. Tracy Fasolino
Those hospital nurses saw firsthand the harm of aggressive cancer treatments. Leading the way, Dr. Florence Walt, an American nurse and then dean of Yale School of Nursing, was passionate about addressing the needs of those cancer patients. She gathered nurses and community representatives, all volunteers, to create the hospice movement. As early as 1966 Walt was firmly committed to hospice.
00;05;36;10 - 00;05;52;12
Dr. Tracy Fasolino
In fact, she stepped down as the dean and worked to reform dying in New Haven, Connecticut. But those hospice advocates were at odds with research oncologists and had to fight to be accepted and obtain funding.
00;05;55;18 - 00;05;58;03
President Nixon
Members of the Senate. Members of the House. Ladies and gentlemen.
00;05;58;18 - 00;06;03;28
President Nixon
We are here today for the purpose of signing the Cancer Act of 1971.
00;06;04;03 - 00;06;35;29
Dr. Tracy Fasolino
President Nixon announcing the allocation of 1.6 million in funding for cancer research. That's an equivalent of about 9 million in today's dollars. So the medical mainstream narrative was actually geared toward cancer treatment with little emphasis on the plight of our terminally ill patients in hospitals. But in 1978, the Secretary of Health, Education and Welfare under the Carter administration, Joseph Califano, was at Yale to speak about this War on Cancer initiative.
00;06;36;19 - 00;07;01;09
Dr. Tracy Fasolino
While he was there, he met with the founders of the Connecticut Hospice and he walked away so impressed with their program and passion that he promised to create a special demonstration project to look at the feasibility, as well as the desirability, of including hospice care as a covered service under Medicare. You know, it pays to have the right people in the right places at the right time.
00;07;05;12 - 00;07;35;21
Dr. Tracy Fasolino
Along with the War on Cancer Initiative, hospice was continually being redefined. The National Hospice Organization and the International Work Group on Death, Dying and Bereavement were navigating their differences on who, what and when hospice services should be provided. Now the National Hospice Organization wanted a medical supervision model. You know, that was an important political move. They wanted to ensure incredibility and waylay community and legislative fears about unsupervised nursing care.
00;07;36;16 - 00;08;09;09
Dr. Tracy Fasolino
In contrast, the International work group was basing their model on hospice as a collaboration of many disciplines working as an integrated clinical team. They imagined the team would be composed of the patient, the family and professionals, all with equal partnerships, preventing one discipline from trumping the other. Ultimately, the National Hospice Organization, now known as the National Hospice and Palliative Care Organization, NHPCO, had the most influence in designing the hospice benefit.
00;08;10;00 - 00;08;36;06
Dr. Tracy Fasolino
This organization had the support of powerful congressional leaders, many of whom believe that hospice was one possible answer to the problem of long term care for the elderly. Despite the fact that hospice was initially created for cancer patients. So as you can see, the political stage was set and the policy window opened for this humane and cost effective way to improve quality for terminal cancer patients.
00;08;37;11 - 00;09;10;29
Dr. Tracy Fasolino
Senator Edward Kennedy was quoted in 1978 as saying, “Hospice is many things. Hospice is home care with inpatient backup facilities. Hospice is pain control. Hospice is skilled nursing. Hospice is a doctor and a clergyman coming to your home. But most of all, hospice is the humanization of our health care system.” So in 1980, the Health Care Financing Administration, now known as the Center for Medicare and Medicaid Services, CMS, launched
00;09;10;29 - 00;09;34;05
Dr. Tracy Fasolino
the demonstration project, ultimately known as the National Hospice Study. Now, the goal of the study was to examine the impact of hospice care on quality of life for the patients and the caregivers, at the same time, collecting data on health care costs. 200 hospice organizations applied to be part of this demonstration project, and 26 were chosen to be in the study.
00;09;35;01 - 00;10;04;11
Dr. Tracy Fasolino
CMS would pay these hospice organizations on a cost basis to provide the additional services to care for those terminally ill cancer patients. The interdisciplinary team was composed of nurses, aides, physicians, social work and spiritual care. And with any type of comparative study, the demonstration project included 14 hospice organizations and 14 conventional care settings with things like high quality oncology teams.
00;10;04;26 - 00;10;29;24
Dr. Tracy Fasolino
Now, these groups would continue providing usual care. When the study was initiated, it was the largest study undertaken to evaluate hospices potential as a health care reform. After three years, the study did indeed find hospice was able to manage patients symptoms and improve their quality of life, both at a lower cost and more importantly, with superior patient and family satisfaction.
00;10;30;08 - 00;10;56;00
Dr. Tracy Fasolino
Now, the estimates of cost were very sensitive to how long patients received hospice care. An important caveat at that time was that hospice save money only if the average length of stay remained under 30 days. Now, to better understand the history of the legislative efforts of this Medicare hospice benefit, I turn to former President and CEO of NHPCO, Mr. Edo Banach. In his role,
00;10;56;10 - 00;11;00;05
Dr. Tracy Fasolino
he had knowledge of the stories of the political climate during that time.
00;11;00;06 - 00;11;18;20
Edo Banach
Let's go back to where we were in the late seventies and early eighties. Medicare had only been around for ten years, right? So it hadn't actually been that long. If you think about ten years ago and think that that was 2012, that's essentially the amount of time that we're talking about. And it quickly became clear that there were some gaps in Medicare.
00;11;19;05 - 00;11;38;13
Edo Banach
And one of those gaps was related to end of life care. And Medicare was spending an awful lot of money, still is spending an awful lot of money for end of life care. And at the same time, you had a lot of folks in the community who were really struggling. You had communities who really sort of demanded some change.
00;11;38;13 - 00;11;58;28
Edo Banach
And we, I had a really interesting conversation with then Representative Leon Panetta, you know, kind of said, look, I was a junior congressman, I was sitting in my office, and a group of folks came to my office and they started talking about this hospice benefit and the need for hospice benefit. Now, they didn't know at the time that I was struggling with that very same thing with my mom.
00;11;59;18 - 00;12;31;07
Dr. Tracy Fasolino
There was opposition to this legislation mainly based on the missing cost benefit data. Despite intense lobbying by hospitals, home health agencies and nursing homes, the House passed H.R. 5180 on July 1982, and the Senate passed the bill by unanimous vote on July 22nd, 1982. This bill amended the Social Security Act to provide coverage for hospice services, and in 1986, hospice became part of the permanent Medicare benefit.
00;12;32;00 - 00;12;52;01
Dr. Tracy Fasolino
So wonder what it looked like for the boots on the ground nurses. To find out, I turn to Dr. Betty Ferrell. She is a national and an international leader in hospice and palliative care. Beloved and respected by so many. She started her nursing career back in the late 1970s, right at the onset of the hospice movement.
00;12;52;27 - 00;13;29;09
Dr. Betty Ferrell
When I started as a nurse in 1977. The word hospice didn't exist, and the first hospice in America had just started about four years before, you know, one hospice program in Connecticut. And so by this time when I started as a nurse, there literally were, you know, less than ten in the country. But I remember very vividly around 1982, when I first started hearing about this thing called hospice.
00;13;29;09 - 00;13;50;06
Dr. Betty Ferrell
So I lived in Oklahoma at the time, and I was a part of starting the first hospice in the state. Sort of a fun reflection, I worked for this homecare agency, and we wanted to start hospice and we put an ad in the newspaper just a “Help Wanted”, you know, kind of ad in the Oklahoma City newspaper, you know, saying staff to work at this new hospice.
00;13;50;15 - 00;14;09;08
Dr. Betty Ferrell
And I remember I was, you know, came back into my office at some great agency and I had a phone call from the newspaper and the newspaper company, you know, the publisher was calling to say, you know, you have this ad, but we keep getting calls from people saying, well, what's a hospice? Don't have at home, I cut it out and I saved it.
00;14;09;09 - 00;14;30;22
Dr. Betty Ferrell
So we had the, we redid the ad and we had to put a definition. And the other fun thing about it was people couldn't even pronounce the word hospice. So we had to put, you know, people would say “hos spice” or, “ho spice”, what is this? And so we had written out how to pronounce the word. That's how unknown it was.
00;14;34;13 - 00;14;58;16
Dr. Tracy Fasolino
Dr. Ferrell would go on to talk about how their teams would be surprised if a patient with heart failure or some type of advanced lung disease would be on their hospice census list. I guess it was rare that these types of patients would enroll with hospice since the benefit was designed for cancer patients. And I can attest projecting life expectancy for someone with heart failure or COPD (Chronic Obstructive Pulmonary Disease) is incredibly difficult.
00;14;59;02 - 00;15;34;01
Dr. Tracy Fasolino
So the hospice teams actually saw the need to care for those nonmalignant diseases. A gap was noted and palliative care stepped in. Well, what do we mean by palliative care? According to the World Health Organization, and I quote, “Palliative care is an approach that improves the quality of life for patients and their families facing the problems associated with life threatening illnesses through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems physical, psychological and spiritual,” unquote.
00;15;34;20 - 00;15;58;05
Dr. Tracy Fasolino
Well, there's a lot packed in that definition. Ideally, palliative care is an extra layer of support that focuses on symptoms. But we've seen an uncoupling of palliative care services from hospice to fill the gaps in the needs of patients and caregivers that don't meet that hospice criteria, that less than six months to live or demonstrating continued decline as defined by the industry.
00;15;59;02 - 00;16;28;19
Dr. Tracy Fasolino
In fact, palliative care has been one of the most rapidly growing fields of U.S. health care today. It's demonstrated all kinds of benefits for the patient, the caregiver, cost savings. Palliative care has been integrated into hospital care, outpatient settings, and even specialty practices. It's based on the needs of the patients and the caregivers, not on their prognosis. And it's appropriate at any age and at any stage in a serious illness, including children.
00;16;29;18 - 00;16;54;27
Dr. Tracy Fasolino
Most importantly, palliative care is available and is offered along with curative care. So, for instance, if you have some type of lung condition, say, COPD and you're struggling with shortness of breath. Palliative care can provide that support for the symptom management while the pulmonologist continue to manage the disease. In other words, you can have both pulmonary management and palliative care.
00;16;55;03 - 00;17;07;00
Dr. Tracy Fasolino
It's not an either, or. Now Dr. Wayne Hollinger, a pioneer in palliative care services for pulmonary patients and my mentor, shared some of his insights from the past about palliative care.
00;17;07;13 - 00;17;28;19
Dr. Wayne Hollinger
Some of it was a problem within the practice, and some of it was I think that it just felt like the right thing to do. Yeah. That we really, really did have an idea of futile care and the fact that, you know, sometimes we were doing things to people and not for them. The thing that was lacking with the futile care concept was basically we're just giving up on people and not taking care of them.
00;17;28;19 - 00;17;49;19
Dr. Wayne Hollinger
It's not that you were, you quit. You quit trying to fix them, but after that you should have then been taken care of. We kind of butted heads with some of the nephrologists and some of the oncologists. We'd say, you know, this patient is not benefiting from being on this ventilator and they're never going to get better. And their idea was, well, we never give up.
00;17;55;17 - 00;18;23;16
Dr. Tracy Fasolino
Dr. Hollinger and his partners wanted to make sure that the pulmonary patients received palliative care, either the curative pathway or hospice. He's retired now, but he still speaks with passion about making sure pulmonary patients receive palliative care at the onset of their diagnosis, not just at the end. He was one of the first pulmonary physicians to advocate and support putting a palliative care nurse practitioner into their practice, which is where I've worked now for the last ten years.
00;18;24;01 - 00;18;55;16
Dr. Tracy Fasolino
This embedded palliative care model has me right there working side by side with the pulmonary team, sharing information and ideas back and forth in real time. It's an amazing person-centered model that the patients and caregivers truly appreciate. Over the past decades, we have seen a transformation of the hospice and palliative care movement. What actually began as a very small, voluntary group of individuals have become a recognized and essential component of our health care system.
00;18;56;07 - 00;19;30;02
Dr. Tracy Fasolino
It's pretty phenomenal. The program was initially designed to save Medicare money, and the benefit is still a work in process. Patients at the end of life do represent a disproportionate share of Medicare costs. Plus, there is quite a variation across quality of hospice organizations. There are some reports that they fail to visit the dying patient in the last days of life, where other organizations might actually create a huge gap in care with live hospice discharges really leaving the patient and family members in complete panic.
00;19;30;29 - 00;19;56;14
Dr. Tracy Fasolino
We've seen an evolution of palliative care uncoupling from hospice and a growing phenomena of what that service is going to look like. In the next episode of this podcast series, we'll actually talk to a patient and his caregiver about their experiences with home based palliative care and telemedicine pulmonary palliative care. What are some of the challenges facing our patients and caregivers,
00;19;56;25 - 00;20;31;07
Dr. Tracy Fasolino
providers and policymakers when dealing with palliative care and hospice services? Music, melody and production by Elias Workman, Dorman High School student. Appreciate you liking, commenting and sharing this podcast with others. Let's get this information out to your families and communities.