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This is not the end: The hospice revolution
Story by Linda J. Simpson and
Photography by Bill Hughes
As more Southern Nevadans take advantage of hospice and palliative care, the often-misunderstood specialties are becoming crucial pieces of the health care puzzle
Meet Jimmy Bryant. He currently has stage IV emphysema with severe chronic pulmonary obstructive disease. It’s a terminal diagnosis. But trust us — this is a happy story.
The 58-year-old New Jersey native moved to Las Vegas in 2010 to be with his girlfriend. Numerous trips to doctors, lung specialists and hospital emergency rooms finally ended in December of 2011. That’s when his doctors told him to start working on his bucket list and enroll in a hospice program.
He enrolled. And he graduated. In fact, Bryant now has graduated from in-patient hospice four times. Graduate? Yes. Each time, Bryant stabilized in hospice and was deemed well enough to be discharged. Bryant is an object lesson in what happens when hospice does its job especially well: giving certain patients a new lease on life.
In fact, Bryant not only got better, but he found the inspiration to even launch a nonprofit, Lights 4 Love, which donates red porch-light bulbs to anyone who needs first responders to easily find their home in the case of a life-threatening emergency.
“Maybe I can’t do anything to save my own life, but I know I can help other people,” Bryant says.
Bryant is a perfect example of a common misconception that people die sooner in hospice than in curative care — or that hospice is simply synonymous with a death sentence. In fact, research has shown that overall survival rates of seriously ill patients who receive hospice care live an average of 21-81 days longer than those who do not receive hospice care.
A different kind of graduate
“Graduate from hospice”? Most people think the only way you can graduate from hospice is to die. Not so, says Jerry Bolyard, regional executive director of Creekside Hospice, which has been in business in Las Vegas since 2001.
He explains graduating from hospice like this: “Sometimes there is a debilitating event in somebody’s life (like a broken hip, stroke, or heart attack in a patient who has a life-limiting disease). We send in a nurse or a certified nursing assistant. What happens is you go from living alone and not being able to get your medications — not able to care for yourself,” he says. “We’re making sure that (you improve) and now you no longer qualify for hospice.”
Part of Bolyard’s job is educating people on what it means to enter hospice — and what it means to exit hospice. He says jokingly, “I love the idea of a ‘I survived Creekside Hospice’ (T-shirt).”
Most people think hospice is only for the last few days of life and that it’s a place where you go to die. In fact, about 65 percent of hospice services are provided in the home. Hospice includes more than just attempts to control pain. Besides a physician and registered nurse who make house calls, the hospice interdisciplinary team includes a social worker, nursing assistant, spiritual counselor, speech, physical and occupational therapists. Medical equipment, supplies and pharmaceuticals are also provided. And if you are a Medicare recipient, 100 percent of the cost is paid for by Medicare.
“People come off of hospice programs all the time — even more so in palliative care programs, because people don’t have to have a limited prognosis (in palliative care),” says Brian Bertram, vice president of Infinity Hospice Care and executive director of Nevada Palliative Care. “They have their symptoms addressed, they feel better, they go back to doing what they were doing before they faced their serious illness.”
And increasingly, Las Vegans are taking advantage of this evolving conception of hospice. A 2011 report compiled by Health Planning and Development and the Summit Business Group details how many Medicare recipients are using hospice services at the time of their death in Nevada. Clark County has a “hospice penetration rate” of 80 percent. (To put that in context, Washoe County has 57 percent, Elko County has 10 percent, Eureka County has 0 percent and Lincoln County has a 101 percent hospice penetration rate.)
The Nevada Department of Health and Human Services currently has approximately 50 licensed and inspected hospice providers on its Clark County roster. The number of for-profit hospices has increased nationwide from 34 percent in 2001 to 60 percent in 2011. The not-for-profit providers have remained constant at 34 percent in the same time period. Also, consider that The American Academy of Hospice and Palliative Medicine, the professional organization that includes physicians, nurses and other healthcare providers, began with 250 charter members in 1988 and has grown to nearly 5,000 today, a 950 percent increase in membership in 25 years.
“I think that competition has made hospice better. It’s increased the quality of everybody’s game,” says Bolyard of Creekside. Creekside has offices in Pahrump and Las Vegas and in-patient care facility in town.
Meanwhile, family-owned Infinity Hospice Care — with offices in Reno, Phoenix, Pahrump and Las Vegas — has recently opened a new in-patient 12-bed facility in town. It features two buildings totaling 20,000 square feet, and even a dedicated palliative care exam room for non-hospice patients.
House of (controlling) pain
Also growing in profile in the Las Vegas Valley is palliative care — that is, a form of care that seeks primarily to relieve the symptoms of a patient’s disease.
When Dr. Brian Murphy, chief medical officer of Nathan Adelson Hospice, Southern Nevada’s oldest and largest non-profit hospice, graduated from medical school in 1999, he remembers he had a lecture or two on pain medicine.
“That’s it,” he said. “So imagine when I got to my residency program and I had to treat someone’s pain. I didn’t really know what to do. You’re just not taught it.”
The advent of these specialties is part of generating a larger dialogue about a more holistic approach to health.
“Palliative care is an extra layer of support,” says Bertram of Infinity Hospice Care. “Nowhere in medicine except for palliative care medicine are people getting this kind of interdisciplinary care. As a health care team, we start focusing on aligning ourselves with the patient and the family so we can have plenty of plans in place so that we can kind of know what to expect even when our loved ones are declining.”
Recent studies by Dr. Jennifer Temel and associates at Massachusetts General Hospital have demonstrated a lower incidence of depression, higher quality of life and a 2.7 month longer survival rate in patients with incurable metastatic lung cancer who
Better yet, the specialties are making professional strides as well. In June 2006, the Accreditation Council for Graduate Medical Education began the process of accreditation for hospice and palliative medicine fellowship programs. By September of the same year, the American Board of Medical Specialties had approved the creation of hospice and palliative medicine as a subspecialty of eleven established specialty boards.
Starting in 2013, only applicants who have completed an ACGME-accredited hospice and palliative medicine fellowship will be eligible to take the certification exam to become board certified in hospice and palliative medicine.
“The medical community is taking hospice a lot more seriously and (it) understands that it really is a specialty and it hasn’t been recognized in the past,” says Bolyard.
Will Nevada keep up with this growing movement in health care? It looks like it, but challenges lie ahead. Based in Reno, the University of Nevada School of Medicine has a fellowship program in hospice and palliative care medicine, headed by Dr. Kelly Conright. The program has produced nine graduates since the program launched in 2008; six of those graduates will continue to practice in Nevada. Rotations with the VA hospital, St. Mary’s hospice and Infinity hospice in Reno enhance their learning experience.
Conright explains that in Reno doctors are now building what she calls “a palliative bridge.” When a doctor recognizes the need for a “higher approach to care,” the palliative team is called. Then when the time comes that a patient qualifies for hospice, “the relationship has been established and there is an earlier enrollment into hospice care.” Will the program expand into Southern Nevada? Not anytime soon. Conright explains that the interest is out there, but finding faculty and “people who have the skill-set to administratively create these fellowships” in the southern part of the state is the challenge.
We’ll need those newly minted specialists sooner rather than later.
“Since the baby boomers are getting older, we know that there is a workforce shortage in end of life care, and only a handful of specialists,” says Bertram.
To meet workforce needs, Angela Ricker, director of patient services at Creekside Hospice, is always on the hunt for talented people.
[HEAR MORE: Hear a discussion of end-of-life issues on "KNPR’s State of Nevada."]
“There is a challenge in finding quality nurses, and so we have basically been having ongoing interviews because I’m trying to anticipate positions.” When she finds what she calls a “shining star,” they place the candidate with “a nurse who has been here a long time and who has so much to offer. She will be the dedicated preceptor for this person.” Creekside’s patients receive a continuity of care, the nurse develops new skills and Creekside gains a more valuable employee. “If hospice was easy,” says Ricker, “everyone would do it!”
“It’s a special calling,” says Bolyard. “It’s so different than hospital nursing.”
Pay now or pay later
In the book “The Best Care Possible,” author Dr. Ira Byock, Director of Palliative Medicine at Dartmouth-Hitchcock Medical Center, argues that a shift in our approach to how we die will improve the quality of healthcare — and result in a lower cost to families and our country. Instead of spending $6,000-$10,000 per month on chemotherapy drugs with all of their side effects, Byock estimates the cost of palliative care in the hundreds of dollars per month — with an extension in both quality and length of life.
Byock cites research that analyzed Medicare data from 1998-2002 and compared survival rates of comparable groups of seriously ill patients with hospice and those without. Overall, in each group, those that received hospice care lived an average of 29 days longer than those who did not.
“It’s all in the allocation of resources, and the people who are providing care need to be the gatekeepers of those resources,” says Dr. Lisa Lyons, associate medical director of Infinity Hospice and Nevada Palliative Care. “Hospice and palliative care can help lower costs for health care overall, because when we stop all the high-end stuff at the end — and possibly place those patients in palliative care programs or in hospice — that is where better care can be delivered for the patient and definitely for the family.”
Furthermore, researchers at the Mt. Sinai Icahn School of Medicine have found that hospice patients have lower Medicare costs, reduced rates of hospital and intensive care use, hospital readmissions and in-hospital deaths when compared with matched non-hospice patients. In their study published in the March 2013 issue of Health Affairs, the authors found that if beneficiaries enrolled in hospice earlier, Medicare could save millions of dollars. Even better, these patients would reap the benefits of an improved quality of care and a better quality of life.
“We are the only nation on the planet that creates six-month-or-less issues,” says Murphy of Nathan Adelson Hospice. “If you look at the U.K., Australia, Canada, you can go to hospice at any time. They don’t do this six-month thing, and they save money as well.”
But the growing awareness of hospice as a wellness option has a downside with a ironic twist: Patients not dying on time can be costly too.
“We’ve become a $20 billion industry and Medicare notices it now,” Murphy says. “The not-for-profits have historically just bled money. It wasn’t uncommon in the 1990s for hospices to lose over $1 million a year and then they would raise money to make up the difference.”
Medicare hospice reimbursement is paid as a flat rate per day. As of Oct. 1, 2012, Clark County hospice providers are paid $178.52 for routine home care and $786.49 for general care at an in-patient facility. If Medicare finds inconsistencies with the Medicare regulations, such as allowing patients to enroll or stay enrolled when they do not meet Medicare criteria, providers are required to pay back all of the Medicare money that was paid for that particular patient. Appeals can only be made after the fact.
This type of audit caused one of the largest nonprofit hospices in the U.S., San Diego Hospice and the Institute for Palliative Care, to declare bankruptcy and close its doors. Their crime was being “too liberal” in their admissions and, because of their excellent care, the patients did not die on schedule.
“Medicare created all these levels of review,” says Murphy. “There are enough acronyms to cause someone a headache. What’s really sad is that it is making people question, maybe too rigorously, whether this (particular) person is appropriate for hospice. If they have a prognosis for seven months, maybe they’re not getting signed up and they’ll still die in five months because we got our prognosis wrong. Now we are almost in a culture of fear of signing people up because we don’t want to have to pay back Medicare.”
The next wave
Estimates of how many Americans have dementia/Alzheimer’s range from 4.1 million to 5.2 million. The Alzheimer’s Association expects those numbers to rise to 14 million by 2050, with one diagnosis every 33 seconds. We know that people with the disease live on an average four to eight years after diagnosis, but some can live up to 20 years. A new RAND study estimates direct costs such as providing medicine to nursing homes at $109 billion per year in 2010.
With the sheer number of baby boomers approaching the age of 70 when nearly 15 percent of them will be diagnosed with Alzheimer’s, the impact to our health care system and our society at large looms. The best-case scenario is that a cure will be found.
Otherwise? “Dementia will overwhelm our health care system and it will overwhelm our economy as the baby boomers go through it,” predicts Murphy. “We are in for a shock.”
According to the National Hospice and Palliative Care Organization, in 2011, 62.3 percent of hospice admissions were for non-cancer diagnoses. Using Medicare figures, 14.4 percent of Medicare recipients with a dementia diagnosis received three or more days of hospice care in 2001 and by 2007 that number had increased to 33.6 percent. In other words, the market for hospice and palliative are only looks to be growing — fast.
“We need to change the perception that hospice means death,” Bolyard says. “Hospice means a quality of life before you die. We have one time. There are no do-overs. That’s what I think about every day — there are no do-overs!”
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