October 01, 2013
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Advocates call for early integration of palliative care into cancer therapy

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Several randomized studies conducted in the past few years reveal the clinical benefits of palliative care for patients with cancer, particularly if it is utilized at or soon after diagnosis.

Perspective from Augusto Caraceni, MD

Based on study findings, the National Comprehensive Cancer Network released guidelines in 2011 that suggest palliative care be offered throughout the entire course of cancer treatment.

A year later, ASCO published a provisional clinical opinion that recommended palliative care be offered at diagnosis for patients with metastatic disease, as well as for all patients with high symptom burdens regardless of long-term prognosis.

Yet, patient and physician perceptions, a shortage of providers and the belief that symptom and stress relief yields little reward in the pursuit of value-based care have slowed the widespread adoption of this approach.

Consequently, many associations and physician advocates are intensifying their pleas that providers integrate palliative care into the treatment paradigm early rather than limiting it to a component of end-of-life care.

“If we are committed to the best cancer care in this country, then we will be committed to ensuring that palliative care is as much a part of comprehensive care as chemotherapy, radiotherapy or surgery,” said Charles F. von Gunten, MD, PhD, vice president of medical affairs for hospice and palliative care for OhioHealth, a network of hospitals and health care organizations based in Columbus.

HemOnc Today spoke with several clinicians about the benefits of palliative care, the advantages associated with its early integration in the treatment process, and the barriers that must be overcome to make this become standard practice.

A key partnership

About 1.6 million people in the United States will be diagnosed with cancer in 2013, according to data from the SEER database.

Proponents suggest many of those patients would benefit from palliative medicine, designed to help manage symptoms, pain and complications associated with serious illness and maximize patients’ quality of life.

The partnership of oncology specialists with palliative care principles and practices assures patients are in the best possible condition to handle treatment and its side effects, according to Diane E. Meier, MD, FACP, director of the Center to Advance Palliative Care at Icahn School of Medicine at Mount Sinai. 

The partnership of oncology specialists with palliative care principles and practices assures patients are in the best possible condition to handle treatment and its side effects, according to Diane E. Meier, MD, FACP, director of the Center to Advance Palliative Care at Icahn School of Medicine at Mount Sinai.

Source: Photo courtesy of Center to Advance Palliative Care

“The partnership of oncology specialists with palliative care principles and practices assures that patients are in the best possible condition to handle the treatment and its side effects and are able to be strong enough to complete an appropriate course of therapy,” Diane E. Meier, MD, FACP, director of the Center to Advance Palliative Care at Icahn School of Medicine at Mount Sinai, said in an interview. “The data are very clear that patients who are in pain or who are depressed are far less likely to complete their regimens and have a higher risk of mortality. The data are also increasingly clear that patients who get palliative care at the same time as their cancer management from their oncologist not only feel better — as do their families — they also live longer.”

In a study published in 2010 in The New England Journal of Medicine, Temel and colleagues determined early integration of palliative care in patients with metastatic non–small cell lung cancer improved outcomes.

The analysis included 151 newly diagnosed patients who were randomly assigned to standard cancer treatment with or without early palliative care. Researchers assessed quality of life and mood at baseline and at 12 weeks. By the 12-week mark, 27 patients had died, and 107 patients were able to complete the assessments.

Analysis with the Functional Assessment of Cancer Therapy- Lung (FACT-L) scale (score range, 0-136) showed patients in the early integration group had higher mean quality-of-life scores (98 vs. 91.5; P=.003) and reduced incidence of depressive symptoms (16% vs. 38%; P=.01). Fewer patients assigned to early palliative care underwent aggressive end-of-life care (33% vs. 54%; P=.05), yet they still demonstrated longer median survival (11.6 months vs. 8.9 months; P=.02).

Project ENABLE II — a randomized controlled trial conducted by Bakitas and colleagues — showed similar results. The analysis included 322 patients with advanced cancer treated at an NCI-designated comprehensive cancer center and affiliated clinics. The most common diagnoses were cancer of the gastrointestinal tract (41%), lung (36%), genitourinary tract (12%) and breast (10%).

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Researchers assigned 161 patients to a multicomponent, psychoeducational intervention. Advanced practice nurses conducted four weekly educational sessions and monthly follow-up sessions with those patients. The other 161 patients received usual care.

Bakitas and colleagues used the Functional Assessment of Chronic Illness Therapy-Palliative Care (FACIT-Pal) to measure quality of life, the Edmonton Symptom Assessment Scale (ESAS) to measure symptom intensity, and the Center for Epidemiological Studies Depression Scale (CES-D) to measure mood. The investigators conducted these assessments at baseline, 1 month and every 3 months thereafter until death or study completion.

Researchers did not observe a difference in symptom intensity scores (P=.06) or intensity of service, a measure of ED visits and days in the hospital and ICU. However, patients who underwent the nurse-led palliative care program reported higher quality-of-life (P=.02) and higher mood scores (P=.02).

 Thomas J. Smith, MD 

Thomas J. Smith

“The data are accumulating that people live at least as long — if not longer — when hospice and palliative medicine are involved alongside usual cancer care,” Thomas J. Smith, MD, director of palliative care for Johns Hopkins Medicine and the Sidney Kimmel Comprehensive Cancer Center, told HemOnc Today. “Multiple studies document better symptom management, less distress, less anxiety and less depression. A number of studies document less caregiver stress. I think palliative care can be considered the home run of American medicine at this point.”

Financial impact

Studies have shown patients who receive palliative care undergo fewer resuscitation attempts, are less likely to die on a ventilator and are more likely to die at their place of preference — which is almost always at home.

“It improves the quality of care,” Smith said.

Consequently, care also becomes more affordable. Those who undergo palliative care concurrently with cancer treatment often require fewer hospitalizations and undergo less chemotherapy near the end of life, Thomas said.

“All the data to date suggests that people who use palliative care and hospice end up costing the health system less,” Smith said.

Morrison and colleagues conducted two studies that demonstrated use of palliative medicine significantly reduced cost.

In one analysis, published in Archives of Internal Medicine, researchers evaluated administrative data from eight hospitals with established palliative care programs. The investigators matched 4,908 patients who received palliative care with 20,551 who received usual care. They estimated costs per admission and per hospital day, and compared results between groups.

Among patients who were discharged alive, palliative care reduced direct hospital costs by nearly $1,700 per admission (P=.004) and $279 per day (P<.001), results showed. Among patients who died in the hospital, palliative care reduced direct hospital costs by $4,908 per admission (P=.003), the researchers concluded.

In the second study, published in Health Affairs, Morrison and colleagues demonstrated similar hospital cost savings for Medicaid beneficiaries.

An analysis of data from four hospitals in New York during a 3-year period showed hospital costs for Medicaid-enrolled patients were $6,900 less when they underwent consultations with members of a palliative care team.

If every hospital in the state with 150 or more beds had a fully functioning palliative care consultation team, reductions in Medicaid hospital spending could range from $84 million to $252 million per year, Morrison and colleagues concluded.

Amy P. Abernethy, MD, PhD 

Amy P. Abernathy

Amy P. Abernethy, MD, PhD, an oncologist and associate professor of medicine at Duke University School of Medicine, conducted a study to determine whether increased use of palliative care correlated with increased patient functioning. The results, published in March in the Journal of Pain and Symptom Management, showed each additional palliative care visit during the first month of follow-up was associated with increased patient functioning as calculated through an area under the curve approach (0.008 per visit; P=.01).

Although initial status served as the strongest predictor of subsequent patient functioning, the findings still show palliative care can help to “right-size” health care for patients with advanced illness, Abernethy said.

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“Not only do you reduce costs, you allow people to stay at a better level of functioning for longer, which means that you have a reduction in the need for family caregivers in the home,” Abernethy told HemOnc Today.

Perceptions and other barriers

The greatest obstacle to widespread use of palliative care is perception, according to Christine A. Zawistowski, MD, a pediatric palliative care and intensive care doctor at NYU Langone Medical Center and a HemOnc Today columnist.

“Palliative care is associated with death and dying,” Zawistowski said in an interview. “In the United States, [the common expectation is] everybody is supposed to live a long, full life and not die until they’re an adult — an old adult, at that. Unfortunately, people die at all different points in their lives. Our attitude about death and dying in this country makes palliative care such a scary thing.”

Physicians actually are most likely to confuse palliative care and hospice, and they convey this information to their patients, Meier said.

Under Medicare statutes, hospice is restricted to terminal patients with short prognoses who are willing to forgo life-prolonging therapies.

“Palliative care has no such restrictions,” Meier said. “That is something that is tough to get across to doctors. That’s a huge barrier: The physician’s misunderstanding of the applicability of palliative care from the point of diagnosis as opposed to at the point of death.”

Some in the field have suggested changing the term “palliative care” to “supportive care” to combat those misperceptions.

Regardless of what it is called, some physicians simply are resistant to new or different ideas.

“Physicians tend to practice as they were trained,” Meier said. “Most oncologists are baby boomers. Those oncologists were trained in an era when there was no such thing as palliative care. Therefore, because it’s a new idea and the data are new, we don’t find rapid adoption of new practices. Even though doctors are supposed to be evidence-, science- and data-driven, behavior change is very slow and very difficult.”

A workforce shortage also prevents widespread use of palliative care in the United States, according to Mellar P. Davis, MD, an oncologist with the Harry Horvitz Center for Palliative Medicine at Cleveland Clinic.

“The average number of full-time equivalents in a palliative program is only two,” Davis told HemOnc Today. “It’s largely understaffed and under-resourced.”

The workforce shortage is not caused by a lack of interest in the field, however.

“Palliative care is the fastest growing subspecialty of internal medicine and family medicine,” Meier said. “It’s not that people aren’t interested. The problem is finding dollars to pay salaries for people who want to train in palliative medicine.”

Experts also said there are not enough training programs in palliative care. The Balanced Budget Act of 1997 capped the number of residency positions, and the number has not changed in 16 years.

“In order for palliative medicine fellowship training programs to get access to those slots, they have to take them away from another specialty,” Meier said. “Nobody wants to give up their training slots.”

Government intervention could alleviate this problem.

“Hopefully, there will be some movement in Congress to potentially create more fellowship and training opportunities,” Smith said.

ASCO intends to use an NCI grant to establish an online education program for palliative care, von Gunten said. As part of the year-long, interactive education, students receive small amounts of information via email or their smartphones once or twice a week. The program provides feedback based on the students’ responses. ASCO hopes to launch the program in 2014.

A more efficient approach

Even with additional staffing, there could never be a sufficient number of palliative care teams to the meet the needs of all seriously ill patients and their families, experts suggest.

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“A much more efficient approach would be to improve the skill sets and capabilities of everyone else — oncologists, nurses, social workers, general practitioners and internists,” Meier said. “What we really need to do is improve the basic skills in pain management, communication and coordinating care that every doctor, nurse and social worker needs. That way, you can restrict the use of specialty palliative care for those most complex and difficult cases that the generalist cannot handle.”

Reimbursements also are a concern. Palliative care is reimbursed at the same rate as other cognitive specialties, such as pediatrics, geriatrics and neurosurgery.

“It’s the labor of people and, overall — broadly in American health care — the labor of people is less well paid for than devices or procedures,” von Gunten said.

“You can’t even support one physician on the fee-for-service billing, particularly under Medicare,” Meier said. “Because palliative care comprises a team, not only a physician, it’s even more difficult. Most palliative care teams are supported by a combination of fee-for-service billing, health system support, philanthropy and grants.”

Increased use of care

Despite the barriers and practical challenges associated with palliative care, its use is increasing.

The percentage of US hospitals with at least 50 beds that reported having a palliative care program increased from 24.5% in 2000 to 66% in 2011, according to the Analysis of US Hospital Palliative Care Programs, a report released in 2012 by the Center to Advance Palliative Care.

Nearly 90% of US hospitals with more than 300 beds — the larger tertiary care hospitals that typically handle most patients with serious, complex illnesses — have a palliative care team, Meier said.

The number of outpatient palliative care programs is small but growing, Abernethy added. An even smaller number of palliative care programs see patients at home or in nursing homes.

Palliative care teams typically must include a physician trained in and board certified in palliative medicine, as well as someone with prescribing authority, such as nurse practitioner.

“Given the fact that palliative care includes the social existential and psychological elements of care and also includes the patient’s family, social workers also are part of the program,” Abernethy said.

The National Consensus Project for Quality Palliative Care (www.nationalconsensusproject.org) and the Center to Advance Palliative Care (www.capc.org) provide screening tools to identify patients who are most in need of palliative care. Patients who have been hospitalized more than once in the past 6 months, have symptoms that are difficult to control, experience recurring symptom distress, and/or have functional or cognitive impairment are considered ideal candidates.

“These are all factors that are highly correlated with revisits to the emergency room and rehospitalizations because the patients and their families have nowhere else to turn,” Meier said.

Return on investment

The establishment of a palliative care program requires startup costs, but the program could recoup that money quickly.

“It pays for itself four or five times over,” Meier said. “The data on the cost impact of palliative care is convincing and consistent on what we call cost avoidance.”

For example, if a patient in a pain crisis after hours can seek help by talking with someone on the phone, they avoid the costs of an ED visit.

“Obviously, if you’re an ACO or a patient-centered medical home or have 30-day readmission penalties or hospital mortality penalties, the money you save by investing in a service like that far outweighs the cost of the service,” Meier said. “Palliative care has grown so rapidly in hospitals in the United States because the business case is so strong. If you can avoid five readmissions within 30 days, you’ve paid for your team for the year.”

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Success stories

There are several success stories nationwide. Mount Sinai’s palliative care program, which started in 1997, includes three hospital-based consultation teams. Each consists of a physician, nurse practitioner and social worker. One chaplain serves all three hospital teams. A separate team works in the cancer center.

Patients who are discharged from the hospital but still need follow-up care can be seen through the outpatient palliative care program.

A visiting doctor program serves frail or homebound patients.

“Cost per hospitalization and the risk of rehospitalization have decreased significantly” since the launch of Mount Sinai’s palliative care program, Meier said.

Declan Walsh, MD, established the palliative medicine program at Cleveland Clinic in 1987. A 23-bed inpatient unit opened in 1994, and outpatient clinics have been operational for about 2 decades.

“The clinic has not only embraced that but now has also developed an upstream project of seeing early lung cancer patients, pancreatic cancer patients and people getting left ventricular assist devices for heart failure,” Davis said. “We’re also looking at ALS.”

In addition, the clinic offers a mobile outpatient physician who will see patients in crisis. The outpatient clinic operates 5 days a week, and a 24-hour call system is in place. Three consult services serve the ICU, the oncology units and the general service.

Those programs and others similar to them can serve as models for other institutions, but only if their value is clearly communicated.

Unlike other aspects of cancer care, profit will not be a significant driver of decisions, experts said. Instead, national associations such as ASCO and the American Cancer Society must advocate comprehensive cancer care that includes palliative medicine.

It is also clear that scientific data alone are not enough, von Gunten said.

“It is a scientific fact that palliative care improves care of cancer patients and their families,” von Gunten said. “Now we have a dissemination issue.” – by Colleen Owens

References:

Bakitas M. JAMA. 2009;302:741-749.

Center to Advance Palliative Care. Analysis of US Hospital Palliative Care Programs: 2012 Snapshot. 2012. Available at reportcard.capc.org/pdf/capc-growth-analysis-snapshot-2011.pdf. Accessed on Oct. 15, 2013.

Meier D. Milbank Q. 2011;89:343-380.

Morrison RS. Arch Intern Med. 2008;168:1783-1790.

Morrison RS. Health Aff. 2011;30:454-463.

NCCN clinical practice guidelines in oncology: Palliative care. 2011. Available at: www.nccn.org/professionals/physician_gls/f_guidelines.asp.

Smith TJ. J Clin Oncol. 2012;30:880-887.

Taylor DH. J Palliat Med. 2013;16:1227-1231.

Temel J. N Engl J Med. 2010;363:733-42.

Teno JM. JAMA. 2013;309:470-477.

The Dartmouth Institute. Trends in cancer care near the end of life: A Dartmouth Atlas of Health Care brief. 2013. Available at: www.dartmouthatlas.org/downloads/reports/Cancer_brief_090413.pdf. Accessed on Oct. 10, 2013.

For more information:

Amy P. Abernethy, MD, PhD, can be reached at Duke University Medical Center, DUMC 3436, Durham, NC 27710; email: amy.abernethy@duke.edu.

Mellar P. Davis, MD, can be reached at Harry R. Horvitz Center for Palliative Medicine, Cleveland Clinic, 9500 Euclid Ave., Cleveland, OH 44195; email: davism6@ccf.org.

Diane E. Meier, MD, FACP, can be reached at Mount Sinai Hospital, Annenberg Building, Floor 10, Room 10-02, 1468 Madison Ave., New York, NY 10029; email: diane.meier@mssm.edu.

Thomas J. Smith, MD, can be reached at Johns Hopkins Sidney Kimmel Comprehensive Cancer Center, 401 N. Broadway, Baltimore, MD 21231; email: tsmit136@jhmi.edu.

Charles F. von Gunten, MD, PhD, can be reached at OhioHealth, Kobacker House, 800 McConnell Drive, Columbus, OH 43214; email: charles@pallmed.us.

Christine A. Zawistowski, MD, can be reached at NYU Langone Medical Center, 550 First Ave., New York, NY 10016; email: czawist@yahoo.com.

Disclosure: Abernethy, Davis, Meier, Smith, von Gunten and Zawistowski report no relevant financial disclosures.

 POINTCOUNTER

Is the term ‘supportive care’ preferable to ‘palliative care’?

POINT

Yes, supportive care is a more comprehensive term.

David Hui, MD, MSc 

David Hui

Despite the growing evidence demonstrating that specialist palliative care is associated with improved patient outcomes, there remains significant stigma associated with this term. Many patients, families and oncology professionals associate palliative care with death and dying, which presents a barrier to early referral.

A survey conducted by our group showed oncologists and mid-level providers perceived “palliative care” as more distressing than the term “supportive care,” and they stated they were more likely to refer patients to “supportive care” than “palliative care” (Fadul N. Cancer. 2009;115:2013-2021).

Based on these data, we changed our department name from palliative care to supportive care. In a before-and-after name change comparison, we found an increase in both the number and timing of referral to supportive care at our cancer center (Dalal S. Oncologist. 2011;16:105-111).

The terms palliative care, supportive care and hospice care often are used interchangeably in the clinical setting and can be confusing to patients, families and health care professionals. We recently conducted a systematic review to better understand the overlapping yet distinct concepts for these terms (Hui D. Support Care Cancer. 2013;21:659-685).

Hospice care is limited to providing services for patients with less than 6 months of life expectancy, predominantly in the community setting. Palliative care includes both programs in acute care facilities for advanced cancer patients and hospice care. Supportive care is the most encompassing term. It includes survivorship, palliative care and hospice care programs.

Thus, the use of the term supportive care instead of palliative care symbolizes an extension of palliative care principles and services to all cancer patients instead of only those with advanced disease. Interestingly, a growing number of palliative care programs in the United States have adopted the name supportive care.

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Content and packaging are both important. We need to continue to develop more effective palliative/supportive programs to serve the needs of our patients and their families, and at the same time, educate the public and health care professionals about the benefits of early palliative care referral.

David Hui, MD, MSc, is an assistant professor in the department of palliative care and rehabilitation medicine in the division of cancer medicine at The University of Texas MD Anderson Cancer Center in Houston. He can be reached at The University of Texas MD Anderson Cancer Center, 1515 Holcombe Blvd., Houston, TX 77030; email: dhui@mdanderson.org. Disclosure: Hui reports no relevant financial disclosures.

COUNTER

A name change will not help.

Prof. Sanchia Aranda, RN, PhD, FAAN 

Sanchia Aranda

Many health professionals involved in cancer care misunderstand what palliative care services can provide patients and at what point palliative care should be offered. Many patients, families and caregivers also hold these misconceptions. Attempts to encourage appropriate and timely palliative care referrals must address these misunderstandings.

In our qualitative study of patients with advanced, incurable breast or prostate cancer and their caregivers, we found that patients and their families often linked palliative care with dying (Milne D. The perceptions of palliative care instrument [PPCI]: Development and validation in an advanced cancer setting [doctoral thesis]. Parkville, Australia: The University of Melbourne; 2009.).

Our results also demonstrated that patients were not receptive to alternative names such as “symptom management team,” “pain experts” or “supportive care team.” Study participants said a name change was not sufficient to make them want to hear about palliative care.

Further, we found that a small number of the health professionals in our study — which included nurses, surgeons, medical and radiation oncologists, and social workers — held similar negative beliefs, despite having experience using palliative care services.

Rather than risking ambiguity and confusion by changing the name of palliative care, we suggest improving communication, which will help achieve appropriate engagement with palliative care. The key is to understand patients’ and caregivers’ interpretations of what palliative care is, to correct any misunderstandings and to educate the public about the value of palliative care. Some physician education may also be required.

Prof. Sanchia Aranda, RN, PhD, FAAN, is director of cancer services and information at Cancer Institute NSW in Australia. She also is co-chair of the 2014 World Cancer Congress program committee. She can be reached at Cancer Institute NSW, P.O. Box 41, Alexandria NSW 1435, Australia; email: sanchia.aranda@cancerinstitute.org.au. Disclosure: Aranda reports no relevant financial disclosures.