A Fresh Look at End-of-Life Care

It's imperative that healthcare providers team with patients to determine the ultimate medical mission.

This article appears in the September issue of HealthLeaders magazine.

Muna Salman, MD, a palliative care hospitalist at the 220-bed Rush Copley Medical Center in Aurora, Ill., recalls listening as an elderly, gravely ill patient talked about her dream of being free of pain, even as her family talked of complicated procedures that held no promise of giving her more days. "No more," the patient said, hopeful that she could simply spend her remaining time at home. Salman walked out of the room and teared up, filled with humility over the patient's resolve and a sense of professional satisfaction in knowing, "We helped her on her path."

Mohana Karlekar, MD, medical director of the palliative care program at the 832-bed Vanderbilt University Medical Center in Nashville, recalls a 90-year-old patient who had "terrible heart failure" and was interested in transitioning to a comfort-based approach. The patient was anxious to begin this conversation but afraid to get bad news. He wasn't ready for any in-depth conversations just yet. "Providing too much information when a patient is not ready can result in moral distress. One needs to communicate information in a way that's sensitive to his needs," says Karlekar. "Some may be willing to engage. Some may not."

Timothy G. Ihrig, MD, MA, medical director for palliative medicine at the 132-bed UnityPoint Health-Trinity Medical Center in Fort Dodge, Iowa, recalls treating a 43-year-old woman who had ovarian cancer and was later diagnosed with breast cancer. She was extremely depressed. Ihrig talked with her about a complicated treatment plan. In a sense, "I walked a journey with her, framed it in a real-world perspective." She pursued her treatment plan vigorously. After a series of procedures and treatments, she's now "traveling the world, a new person," he says.

Turmoil, uncertainty, calmness, and serenity are wrapped around the medical mission in end-of-life care. The physicians' experiences reflect those of countless others and are illustrative of the uncertainty in the complicated area of healthcare involving critical conditions and those patients nearing death. Physicians and hospitals struggle over the question of care: Should another test be done? Should there be another surgery? It's never an easy decision, involving a complex mix of medical considerations, the desires of patients and families, and ethical concerns.

"We don't always deal with the issues of death and dying very effectively in our culture," says Kathleen Potempa, PhD, RN, FAAN, dean of the University of Michigan School of Nursing. "When you have a very seriously ill person, a physician is trained to do everything to save a life and the family may be hoping that one more thing will be the magic bullet, but that isn't the reality.

"We don't step back and think of it from a humanistic perspective—we are trained healers, and we forget that dying is a natural part of the human experience," she says. Too often, "we're not letting the person align with the spiritual side of letting go, physically, emotionally, and psychologically, which is important for a peaceful death."

Although hospitals, health systems, and physicians have been struggling with initiating significant conversations with patients and families about chronic illness and end-of-life care, that is changing. At some organizations, clinicians, encouraged by executives, are holding end-of-life conversation more openly and more often. Others say there's a long way to go. As far as healthcare leaders are concerned, the conversations couldn't happen any sooner.

Cost factors

By 2030, the number of people in the United States over the age of 85 is expected to double to 8.5 million. Hospitals are filling rapidly with seriously ill and frail patients. These patients, many with chronic conditions, are bouncing back and forth between nursing homes and acute care hospitals, which shows the need for better coordination and discharge planning.

A 2009 New England Journal of Medicine study found that Medicare payments for unplanned rehospitalizations totaled $17.4 billion in 2004, and that one in five Medicare patients was rehospitalized within 30 days of discharge. A 20% decline in potentially preventable readmissions (from 12.3% to 9.8%) would reduce readmission spending by more than $2.5 billion, according to the Medicare Payment Advisory Commission's March 2013 report to Congress.

As more healthcare facilities seek to know a patient's wishes for end-of-life care, that emotional path also is being made against the cool backdrop of the highest healthcare costs: Care for chronically ill and gravely sick patients is inexorably linked to expensive procedures or expensive stays in the intensive care unit. While hospitals have begun making inroads in controlling spending on end-of-life care, they still fall short in holding back expenses, according to the Dartmouth Atlas Project, which studies variations in health spending.

From 2007 to 2010, the use of hospital services in the last six months of life "fell significantly," with a 9.5% decrease in hospital days per patient and an 11% decrease in deaths. However, Medicare spending per patient in the last two years of life rose from $60,694 to $69,947, a 15.2% increase during a period when the consumer price index rose only 5.3%, the project notes.

"The cost of healthcare in the country is bankrupting the country, and we've got to get our minds around the cost of care," says Chris Van Gorder, FACHE, president and CEO of the 1,323-bed Scripps Health in San Diego. "We need to manage costs much more effectively. The question we always have is, 'Is what we are doing at the end of life the most appropriate thing to do, and the most compassionate thing to do?'

"From an economic and clinical standpoint, the most money spent is in the first five years of life and the last five years of life," Van Gorder adds. Expenses also mount with overtreatment, readmission, and unusually extensive lengths of stay, he says.

End-of-life care also is widely variable in terms of cost. A Dartmouth Atlas study of nearly 3,000 hospitals found significant differences in spending on patients who died between 2001 and 2005 after receiving care. While the Mayo Clinic had the lowest cost at $53,432 per patient, UCLA and New York University had costs of between $90,000 and $100,000. High cost centers also had greater lengths of stay and more procedures, such as doctor visits and consultations.

Although palliative care is seen as cost-effective, the benefit derives not from how much a healthcare institution generates in revenues, but from how it avoids expenses, Van Gorder says. Reimbursements are lagging in palliative care, prompting hospitals to be innovative with their programs, such as taking steps to team up with hospice programs or nursing facilities to curtail costs and reduce 30-day readmissions.

Care alternatives

To alleviate the most heart-wrenching and costly aspects of end-of-life care, healthcare executives are increasingly implementing palliative and hospice care programs for chronically ill patients or those nearing death. Palliative care has been shown to both extend life for patients and reduce healthcare expenses. Palliative care programs focus on the chronically—but not necessarily terminally—ill.

Such efforts are growing in popularity as hospitals form multidisciplinary teams who work to care for patients to relieve the suffering, pain, depression, and stress that often accompany chronic illness. Those teams include physicians, nurses, psychologists, spiritual counselors, and social workers. Unlike palliative care, hospice care is focused on improving quality of life for terminally ill patients with a prognosis of less than six months to live.

As many as 90% of major hospitals with more than 300 beds have palliative care programs, says R. Sean Morrison, MD, director of the Hertzberg Palliative Care Institute at the 1,171-bed Mount Sinai Hospital in New York City and director of the National Palliative Care Research Center.

Morrison is a longtime advocate of palliative care and has been one of the most prolific researchers into its impact on healthcare. He has focused on studies of the economic impact of patients facing serious illnesses that he says account for a disproportionately large share of Medicare spending.

In one of his most significant studies, Morrison examined four New York hospitals between 2004 and 2007 and found that the average patient who received palliative care incurred $6,900 less in hospital costs during a given admission than a matched group of patients who received usual care. The reduced costs included $4,098 less in hospital expenses per admission for patients discharged alive compared to non-palliative care, and $7,563 less for patients in palliative care who died in the hospital.

"Every study has shown people survive long or longer when they receive palliative care. It doesn't shorten life; it extends life," Morrison says. "By matching patient goals to treatment and essentially ensuring patient-centered care, we eliminate misutilization and waste."

The number of palliative care programs in American hospitals has grown substantially over the past decade, according to an analysis by the Center to Advance Palliative Care, which advocates more palliative care programs. Between 2000 and 2008, the number of palliative care programs in hospitals with 50 or more beds increased from 658 to 1,486, for a total increase of 125.8%, the center reports.

For hospitals, palliative care is relatively inexpensive, has a relatively low start-up investment, and has increasing ROI potential because of anticipation that more patients—the elderly and those with chronic conditions—may be suited to such care, the CAPC states. Such programs can have an immediate impact on overall resource usage, including ICU utilization, when patients in palliative care decide to steer away from expensive procedures, according to the center.

Program development

While the trend for such programs clearly is underway, there still is confusion among physicians, hospital leaders, and patients as they struggle to define exactly what palliative care and hospice care is. Some complain bluntly that there are physicians who don't know the difference and have made little attempt to understand the meaning behind the terms. Some healthcare leaders are describing their elevated care for the chronically ill and dying patients as "advance care planning," which is an emphasis on improved coordination including involvement of the patient and his or her family.

Terminology aside, many hospitals are expanding the scope of their palliative care programs. Some, such as the Vanderbilt University Medical Center in Nashville, are expanding programs beyond primary care to other service lines, including oncology and cardiology.

The 325-bed Gundersen Health System in La Crosse, Wis., extends palliative care to outpatient services, while inside the hospitals, its hospitalists are becoming more involved in leadership of palliative care programs. Citing a need to improve patient and family education about palliative care, hospitals are tapping into educational programs and using tools such as videos to increase awareness about end-of-life care.

Less than a decade ago, hospitals were just scratching the surface on developing palliative care programs. Yagnesh Patel, MD, vice president of medical staff at Chandler Regional and Mercy Gilbert Medical Centers in Chandler, Ariz., recalls in 2004 when the hospital's former CEO "asked the group who knows anything about palliative care."

One hospital official "chimes in, I know a little bit." The CEO responded, "You are it," meaning he should direct the program. That set in motion a small palliative care program for Chandler Regional. When Mercy Gilbert Medical Center was built in 2007, it also started a palliative care program. The hospitals have a joint palliative care program that includes inpatient beds and a staff of 11.

Over the past several years, the number of inpatient visits for the hospitals' palliative care programs increased steadily, from 2,800 in 2009 to 3,212 in 2012, and also now averages 52 referrals a month to the outpatient palliative care program, Patel says. By coordinating the palliative care and hospice program, the hospitals also have reduced readmission rates. The palliative care readmissions rate was listed at 1.5%, compared to the overall hospital rate of up to 10%, he adds.

A growing elderly population in Arizona and a lengthy list of congestive heart failure and cancer patients prompted the hospitals to begin their palliative care specialty. Before the palliative care programs were launched, there "was a lack of symptom management and support was lacking," Patel says. "There wasn't enough advocacy for patients' needs, and it wasn't addressed in the acute care setting. As a result, the patients ended up back in the hospital.

"We believed it was necessary to enhance the transition between hospital and home, and we developed an outpatient program two years ago. Once we began our focus on palliative care instead of end-of-life, community hospices came to us and asked how they could support our endeavor to help this special population who were falling through the cracks." Patel says medication reconciliation and illness education are key components of any hospital's plan to reduce readmissions.

Integrated programs

"It's time consuming when you are doing it," Timothy Corbin, MD, medical director for hospice and palliative care services at Scripps Health, says of palliative care. "In a hospital when you are in crisis mode and there's a sudden change in someone's health status, everybody is scrambling, but palliative care needs time. The patient doesn't always hear what's being told and you have to take the time to have these conversations."

That's why it's important to have an integrated program that involves hospitals, medical groups, and home- and community-based services, especially for patients with late-stage chronic illness, says Brad Stuart, MD, CMO at Sutter Care at Home, which is part of the 24 hospitals and more than 5,000 physicians affiliated with the Sutter Health system based in Sacramento, Calif.

Sutter has included care management and palliative services under the umbrella of the Advanced Illness Management program that Stuart and his team created for what he terms a "vulnerable and growing population." While palliative care is often focused on the "relief of symptoms and suffering," Stuart says, "our focus is much more comprehensive and positive."

Multidisciplinary teams that include physicians, nurses, social workers, therapists, and nutritionists are part of Sutter's palliative care program. Various elements focus on the specific needs—and wants—of patients. While physicians often outline the medication needs for patients, the AIM program always considers "what does the patient want?" Stuart says. It's the "little things" that matter that are too often lost in traditional medical care, he adds.

"We are taking more seriously those little things that a patient wants or needs," Stuart says. "It's like the patient walking to the dinner table with their family, or seeing a granddaughter graduate from high school. We make those personal goals the priority and then design care plans to match those. That causes a very interesting shift in priorities, not only for the care team but for people being cared for."

To develop its AIM program, Sutter received $13 million from the Center for Medicare & Medicaid Innovation under a three-year grant. The money came after Sutter's Sacramento region showed positive outcomes from its AIM program, such as reduced hospitalizations and improved care transitions.

The AIM program has had substantial impact, Stuart says. In a two-year review of 185 patients in the program, those who lived at least 30 days had 68% fewer hospitalizations than similar patients who were not in AIM. Those who lived 90 days had 63% fewer hospitalizations, according to Stuart.

There were also significant cost savings, he says: The average savings per patient was more than $2,000 per month. Of all patients who entered the program, about two-thirds went to hospice with longer lengths of stay in hospice than those who had not been enrolled in AIM.

Patients welcome the program, Stuart says. Of all patients offered enrollment in AIM, only 2% have refused.

Early outreach

Gundersen Health System has initiated a pilot program with the Centers for Medicare & Medicaid Services that allows prospective patients with advanced illnesses and their families to consider outpatient palliative care even before they are admitted to the hospital. Gundersen officials say they have succeeded in changing the mind-set of those within the health system and the community by embracing discussions about end-of-life care that are not about dying.

Since establishing the program, Gundersen has rates among the highest in the nation for advance care planning, with unusually low end-of-life hospital costs. It has 95% of its severely or terminally ill patients on an advance care plan, compared to the national average of 50%. In addition, 98% of the time, Gundersen has had consistency between the known care plan and the treatment provided, compared to the national average of 50%.

"Our goal is to try to enroll patients much earlier, identifying them much earlier in their care," says Bernard "Bud" Hammes, PhD, director of Medical Humanities and Respecting Choices for Gundersen. He also chairs the institutional review board and ethics committee at Gundersen. Essentially, the hospital works with patients and their families to integrate patient choices and direction before a time when the patients can't make their own medical decisions.

"We believe people want to stay functional in their homes," Hammes adds. "That's the goal. It's not only better for the patient but also turns out to be cheaper for healthcare. You invest this time, it's relatively low-tech and low-cost care, you prevent three days of hospitalization, and you come out ahead. That's not too difficult to figure out. We realize there are limits to how much a patient wants."

Service line focus

Palliative care programs traditionally have focused on cancer patients. Vanderbilt University's palliative care program, however, sees a diverse patient mix, including oncology, trauma, chronic heart failure, ICU, and dementia patients, says Karlekar, head of the palliative care program.

"Vanderbilt's palliative care program consists of both inpatient and outpatient services. The inpatient services consist of a consultative service and a dedicated inpatient palliative care unit. It includes six physicians, two nurse case managers, a social worker, a chaplain, and three nurse practitioners. A key element of this team is that we provide multidisciplinary care to our patients and families," she says.

The palliative care team strives to help patients develop a plan of care that is consistent with their values, is medically appropriate, and assists with symptom management and the transition of patients to hospice, Karlekar says.

Vanderbilt's palliative program began in 2005 with a small consultation service and expanded over the past several years, she says. The service initially received approximately 35 new consultations per month and now sees on average more than 160 new referrals monthly. While the bulk of referrals are medicine-geriatrics patients and those from the medical ICU, approximately 10%–15% of referrals come from oncology, another 10% from heart failure, 10%–12% from trauma, and 10%–15% from neurosciences.

Outpatient focus

Although much hospital work is moving toward outpatient, palliative care has been slow to adapt. Some hospitals, however, are initiating palliative care programs on an outpatient basis, often with cooperative agreements with private palliative care programs and hospices.

That's what the Gilbert and Chandler hospitals have been doing, says Donna Nolde, RN, MA, MS, CHPN, CEC, of the palliative care unit.

The hospitals' outpatient palliative care program is coordinated with community organizations, agencies, and a hospital foundation, Nolde says. Two years ago, the outpatient program was established. "There was a big realization that chronically ill patients were going home without any resources, sometimes with no one to check on them. They were not truly understanding their medication regime or getting follow-up care with a physician," she says.

The hospital has relationships with hospices, community organizations, and skilled nursing facilities for the so-called "transitional" palliative care plan on an outpatient basis, especially for formerly hospitalized patients, Nolde says. A major element of the program involves follow-up visits and calls from nurses when patients leave the hospital. Within 24 hours of a discharge, there's a visit by a nurse or physician and weekly visits will continue for at least four weeks and then as long as needed. As a result, "patients can leave the hospital a little sooner than they might otherwise," Nolde says.

ACO focus

Collaboration with community providers is of growing importance as hospitals develop accountable care organizations that include palliative care programs. That has been evident at the UnityPoint Health-Trinity Medical Center. The hospital is one of the CMS Pioneer ACO models. The organization covers a region in northern Iowa with a population of about 100,000.

In a three-year review, the UnityPoint Health-Trinity Medical Center palliative care program has resulted in a 67% reduction of overall costs for chronically ill patients: a savings of $800,000 the first year, $1.8 million the second, and $2.1 million the third year. Under the ACO, the 30-day hospital readmission was reduced by 43%, according to Ihrig, the medical director for palliative medicine.

Despite the steady improvement, the process isn't always easy to carry out. "Between 2005 and 2010, UnityPoint Health grew to four different regional palliative care programs," says Lori Bishop, RN, CHPN, clinical innovations adviser. "We took the opportunity at that time to standardize our definitions and unify our programs. Because of limited reimbursement and the system's investments, we began tracking palliative care metrics—which included operational, financial, clinical, and customer satisfaction—across all our regions."

Those problems are inevitable, adds Ihrig, because "even though we are so far ahead of the curve, we are in the preadolescence of palliative care as a subspecialty. We're still working downstream." It's important that the health system leadership works to engage physicians within the ACO. There is still much confusion about palliative care. "Even though our system is still hanging that shingle out for palliative care, there is misunderstanding what it is. It's not a 'death panel' issue."

The big picture

Looking at the big picture of end-of-life care is what Van Gorder says Scripps Health wants to do. That's one of the reasons it outbid another hospital to purchase a hospice facility through the San Diego Hospice bankruptcy process in April. Van Gorder knows people who have been assisted by palliative and hospice care, and it's important to improve coordination between the two, he says.

The 24-bed San Diego Hospice plummeted into bankruptcy this year after it struggled with what Van Gorder calls the "gap in care" issue. That gap, he says, refers to the need of chronically ill patients who may not receive the care needed for their circumstances. That's what occurred at San Diego Hospice, where many of the patients who had extended stays at the hospice were diagnosed with dementia, he says.

The hospice continued to treat patients who had years left to live, not the six-month limit that CMS imposes for covering hospice costs, Van Gorder says. Of the hospice, he says, "Everybody was incredibly well-intentioned and then it went wrong. They got themselves into so much trouble. There's no question that the most important thing for them was patient care and their heart was in the right place."

While it served more patients, the San Diego Hospice failed to address CMS rules. Eventually, an audit showed that the hospice owed the federal government an estimated $60 million or more. In 2011, for instance, 475 out of San Diego Hospice's 3,700 patients—12.8%—stayed for longer than 180 days. "It's so challenging for families to take care of dementia. The hospice called itself palliative care and hospice, but they didn't have home health, they didn't have acute care," Van Gorder says. "That's why an integrated delivery system like Scripps is so well-suited to deal with these things."

By taking over the hospice, Scripps is caring for the hospice patients as part of its overall palliative and hospice care program and is planning ahead, Van Gorder says.

Scripps was among four of California's health systems whose palliative care programs were evaluated by the state's Palliative Care Quality Network. In a 24-hour evaluation of 130 patients, 46% showed reduced anxiety levels, 40% had reduced nausea, and 100% had improved dyspnea.

While the San Diego Hospice existed, the Scripps Hospital became its largest referral. Now, having the hospice brings Scripps to a level of planning a "tighter continuum of care," Van Gorder says.

Informed choices

An important component of advance care programs is patient engagement and education. Researchers have found that showing patients with advanced cancer a video decision-support tool of simulated cardiopulmonary resuscitation improved their understanding of the intervention and caused more patients to prefer to forgo CPR, say Angelo Volandes, MD, and Aretha Delight Davis, MD, cofounders of Advance Care Planning Decisions, a Massachusetts-based nonprofit that develops such videos to "empower patients with serious illnesses" to make informed choices about their end-of-life care.

Allowing patients to make informed choices is a major focus of end-of-life care, says Scripps' Van Gorder.

"We have to get our arms around it," he says. "There is that certainty: You are going to be born and die; it's going to be a sad experience but not necessarily a negative experience for the family. This is a process in which you, the patient, and the family, can go through a little more at ease than otherwise," he says.

Reprint HLR0913-2

This article appears in the September issue of HealthLeaders magazine.