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ONS: Successful early integration of palliative care requires multidisciplinary approach
Lack of uniform definition, inability to measure cost-effectiveness remain key barriers
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A multidisciplinary approach is necessary to support the integration of palliative care at the time of cancer diagnosis, according to a position statement issued by the Oncology Nursing Society.
Oncology nurses can play a crucial role in this process by serving as mediators between medical oncology and palliative care specialists, as well as communicating with and incorporating the care goal plans of patients and their families.
“Oncology nurses have an opportunity to be patient advocates on many different levels,” Kimberly George, MSN-CNS, APRN, ACNS-BC, OCN, oncology nurse executive at Levine Cancer Institute at Carolinas HealthCare System and a HemOnc Today Editorial Board member, said in an interview. “The traditional role of an oncology nurse in palliative care is to identify symptoms and obtain palliative care services for the patients and their families. But there is also an opportunity to have palliative care ‘champion’ oncology nurses who can develop and facilitate patient and family peer teams and drive innovative initiatives.”
Kimberly George
Oncology nurses also can help break down barriers that may stall or prevent the timely integration of palliative care. These barriers may include limited resources or a lack of expertise in the field, as well as the lack of a clear definition of palliative care, which often is confused with end-of-life or hospice care.
“This confusion has existed for many years, and it’s going to take a paradigm shift in order to move away from this notion,” George said.
HemOnc Today spoke with oncology nurse and physician experts about the evolving definition of palliative care and its role in cancer treatment, how various members of the care team should be involved in this process, and the barriers that must be overcome before early integration of palliative care becomes widely accepted in the oncology community.
Palliative care vs. hospice care
One of the key undertakings of the Oncology Nursing Society (ONS) statement is to provide a definition of palliative care that is distinct from end-of-life care.
ONS describes palliative care as a patient-centered, multidisciplinary approach to symptom management intended to improve patients’ quality of life.
“The goals of both palliative and hospice care are to minimize symptomatology and ensure that patients have the right types of specialty support, such as chaplaincy support or social work support,” Anne M. Ireland, MSN, RN, AOCN, CENP, ONS board director-at-large and clinical director of the solid tumor malignancy program at City of Hope, told HemOnc Today. “Many of the mechanisms and the tools are the same, but palliative care is about people living well, and hospice care is more about people dying well.”
The ultimate goals of palliative care and hospice care are different, according to Anne M. Ireland, MSN, RN, AOCN, CENP, clinical director of the solid tumor malignancy program at City of Hope. “In palliative care, the interventions are often aggressive because the goal for the patient is to live well and to live longer,” Ireland said.
Source: Photo courtesy of Anne M. Ireland, MSN, RN, AOCN, CENP
For this reason, palliative care is sometimes referred to as “supportive care.” However, ONS used “palliative care” for its terminology because it is its own medical specialty in which physicians and nurses can become certified.
“There is some confusion about palliative care vs. supportive oncology. Supportive oncology generally deals with complications from cancer therapy, such as neutropenic fever, nausea and vomiting from chemotherapy, and mucositis,” Mellar P. Davis, MD, an oncologist with the Harry R. Horvitz Center for Palliative Medicine at Cleveland Clinic, told HemOnc Today. “Some of the difficulties with palliative care and its early integration are based in the fact that its definition ranges widely throughout the literature, from care that commences 3 months prior to death, to at the time of diagnosis of metastatic disease, to time of diagnosis of an incurable cancer.”
Although symptom management may be a shared component of palliative and hospice care, the ultimate goals are different.
Mellar P. Davis
“In palliative care, the interventions are often aggressive because the goal for the patient is to live well and to live longer,” Ireland said. “We know that if we support the patient with interventions like ventilator support, we can get them through an acute phase of treatment and extend their life. Whereas in hospice care, we know that if we stop transfusing the patient, their time may be shorter, but this is a decision made by the patient with a clear understanding of the consequences.”
Nurses can help explain this distinction to patients.
“Patients often have a negative preconceived notion that palliative care is synonymous with hospice,” Beth Faiman, PhD, MSN, APN-BC, AOCN, certified nurse practitioner at Cleveland Clinic and a HemOnc Today Editorial Board member, said in an interview. “Palliative care is not. Nurses play an important role to help highlight the fact that palliative care is the focus on aggressive supportive care of symptoms. We can encourage them to understand the difference and open up to the possibility of someone else helping them.”
However, the nuanced definition of palliative care may obscure clear indicators of quality.
“What is the value of palliative care in the value-based reimbursement system?” Davis said. “Cost-effectiveness is gauged by quality-adjusted life-years gained, but how to define that in palliative care — where the outcomes are vastly different than the extension of life — is unclear.”
Physician attitudes of palliative care also may limit its implementation.
Charalambous and colleagues conducted a survey — results of which were published in 2014 in BMC Palliative Care — of lung cancer specialists’ perceptions of palliative care. Overall, 12% to 22% of respondents held negative attitudes toward palliative care, and only 22% said they would refer their patients to early palliative care.
Further, a study conducted by Dalal and colleagues — published in 2011 in The Oncologist — demonstrated that a program name change from “palliative care” to “supportive care” was associated with a 41% increase in referrals, as well as a shorter median duration from hospital registration to palliative care consultations (9.2 months vs. 13.2 months; P < .001).
“For many years, there wasn’t necessarily education in academia or professional development on the difference between palliative care and hospice care,” George said. “The fact that hospice care incorporates palliative care adds to the ambiguity in trying to distinguish between the two.”
Early integration
A key facet of the ONS statement is that palliative care should be instituted at the time of diagnosis and continue throughout bereavement.
A study conducted by Zimmermann and colleagues, published in 2014 in The Lancet, showed early palliative care was associated with improved quality of life in patients with advanced-stage cancers. Patients who had monthly follow-up with a palliative care team demonstrated significant increases in the Quality of Life at the End of Life scale (difference, 2.25 points; 95% CI, 0.01-4.49) and the FAMCARE-P16 satisfaction with care scale (difference, 3.7 points; 95% CI, 1.74-5.85) compared with patients who received standard of care.
Temel and colleagues also demonstrated that early palliative care is associated with improved OS compared with standard oncologic care in patients with metastatic lung cancer. The results — published in 2010 in The New England Journal of Medicine — demonstrated that although fewer patients who received palliative care underwent aggressive end-of-life care (33% vs. 54%; P = .05), this group achieved a longer median OS (11.6 months vs. 8.9 months, P = .02).
“We have documented evidence that patients who receive palliative care at the time of diagnosis of advanced lung disease have a better quality of life and, amazingly, a longer life,” Ireland said. “Often people assume that if a patient is receiving palliative care, he or she is going to die sooner. Even in this patient population where we anticipate the patient is going to die, with the introduction of palliative care, patients lived better and longer.”
Further, Rugno and colleagues demonstrated that palliative care follow-up after the completion of anticancer treatment was associated with improved outcomes among women with advanced breast or gynecologic cancers who had previously received early palliative care. The results, published in 2014 in Gynecologic Oncology, indicated earlier integration of palliative care was associated with the receipt of less chemotherapy in the last 6 weeks of life (5.9% vs. 40%; P = .001) and also was an independent prognostic factor for improved OS (HR = 0.48; P = .04).
Despite these promising data, questions remain.
“Many of the randomized studies of palliative care have negative or inconclusive outcomes and are flawed,” Davis said. “There are many issues, such as: Does ‘early’ involvement make any difference, and what is ‘early’ if there are no uniform definitions? Does the palliative specialist need to be involved initially or can the oncologist deliver primary palliative care?”
The fact that physicians may feel as if they are already offering and providing symptom management to their patients presents another challenge to the early integration of palliative care, George said.
“The oncologist should be able to deliver basic palliative care, and then call in a palliative care specialist when symptoms become refractory or difficult to manage,” Davis said. “The greatest benefits, though, appear to be with the integration of palliative care with oncology care at the time of diagnosis of an incurable cancer rather than at the time of sentinel events, such as progression after second- or third-line chemotherapy, when complications related to cancer occur or when chemotherapy is to be discontinued.”
The ONS position statement states, “All patients with cancer benefit from palliative care.” However, data that demonstrate the benefits of early palliative care — such as those from Zimmermann, Temel and Rugno — have focused on patients with advanced cancers, Ireland said.
“It stands to reason that palliative care might also benefit patients who present with a favorable prognosis; however, there are little data to support this at this point,” Ireland said. “Given the fact that there are limited palliative care resources in many organizations, our focus has been to bring these services to patients with more advanced diseases and those with diagnoses where we anticipate a more limited life expectancy.”
Multidisciplinary approach
Although physicians already may incorporate symptom management into their care approaches, collaboration with palliative care experts can help patients reap the benefits associated with a multidisciplinary approach to care.
A study conducted by Tsai and colleagues, published in February in Oral Oncology, demonstrated that patients with oral cavity cancer who received care from a multidisciplinary team experienced a lower risk for death (HR = 0.94; 95% CI, 0.89-1).
The ONS statement defines palliative care as a team composed of “physicians, nurses, social workers, psychologists, psychiatrists, pharmacists, spiritual care professionals and respiratory, physical and occupational therapists.”
Beth Faiman
“A major tenant of palliative medicine is the multidisciplinary team, so the patient feels they have a support network in place,” Faiman said. “There will be what I call ‘critical periods’ in a patient’s care where they will be more involved with the palliative care team, such as when they experience more pain or a disease relapse. It helps to have already opened the discussion for end-of-life care and goals of care, so the patient already knows they have comfort and trust with the team during these critical periods.”
The ONS statement also states that patients’ families — described as the “unit of care” — should be involved in this team approach.
“This is a bit of a paradigm shift because, in a lot of specialties, we don’t view treating the family as the patient, although in palliative care that truly is an essential component to providing good, quality care,” George said. “When you have patients currently on palliative care service, their family members can meet with other patients and families who may be new to the process, and they can explain from the patient–family perspective what palliative care means and the difference it can make.”
Yet, such team approaches may be more difficult to institute at smaller community practices.
A study conducted by Hui and colleagues, published in 2010 in JAMA, showed NCI cancer centers were more likely than non-NCI centers to have a palliative care program (98% vs. 78%; P = .002), at least one palliative care physician (92% vs. 74%; P = .04) and an inpatient palliative care consultation team (92% vs. 56%; P < .001).
Still, the ONS statement proposes that “palliative care principles, at minimum, are incorporated into all oncology care sites, and access to palliative care experts is available for patients in all settings.”
“You may have some significant challenges implementing palliative care in some smaller rural communities,” George said. “If you have a physician practice where there is a doctor, a nurse and someone upfront who runs the office, how do you provide palliative care expertise in those settings? There is a great opportunity for larger facilities to provide palliative care telemedicine to smaller community practices that wouldn’t otherwise have access to that type of expertise.”
Palliative care can be made available in a variety of forms, Faiman said.
“If you are in the community and you don’t have a specific palliative care group, the same concept of aggressive supportive care, attention to symptoms and a multidisciplinary approach can be implemented in most cancer centers across the country,” Faiman said. “The concepts of palliative care can be integrated wherever you are.” – by Alexandra Todak
References:
Charalambous H, et al. BMC Palliat Care. 2014;doi:10.1186/1472-684X-13-59.
Dalal S, et al. Oncologist. 2011;doi:10.1634/theoncologist.2010-0161.
Hui D, et al. JAMA. 2010;doi:10.1001/jama.2010.258.
Oncology Nursing Society. Oncol Nurs Forum. 2015;42:11-12.
Rugno FC, et al. Gynecol Oncol. 2014;doi:10.1016/j.ygyno.2014.08.030.
Temel JS, et al. N Engl J Med. 2010;doi:10.1056/NEJMoa1000678.
Tsai WC, et al. Oral Oncol. 2015;doi:10.1016/j.oraloncology.2014.11.006.
Zimmermann C, et al. Lancet. 2014;doi:10.1016/S0140-6736(13)62416-2.
For more information:
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.
Beth Faiman, PhD, MSN, APN-BC, AOCN, can be reached at Cleveland Clinic Main Campus, Mail Code R33, 9500 Euclid Ave., Cleveland, OH 44195; email: faimanb@ccf.org.
Kimberly George, MSN-CNS, APRN, ACNS-BC, OCN, can be reached at LCI System Nursing, Levine Cancer Institute, Carolinas HealthCare System,1021 Morehead Medical Drive, Administrative Suite, Charlotte, NC 28204; email: kimberly.george@carolinashealthcare.org.
Anne M. Ireland, MSN, RN, AOCN, CENP, can be reached at City of Hope, 1500 E. Duarte Road, Helford Room 2405D, Duarte, CA 91010; email: aireland@coh.org.
Disclosure: Davis, Faiman, George and Ireland report no relevant financial disclosures.
Should palliative care be reserved for patients diagnosed with advanced cancers?
Yes, because the current infrastructure does not yet support the mass implementation of palliative care services from the time of cancer diagnosis.
Arif H. Kamal
Oncology care is primarily delivered in the outpatient setting, where the major gap in accessibility of palliative care services exists. To quantify this gap, Hui and colleagues surveyed cancer centers and demonstrated more than 50% of community cancer centers reported an inpatient palliative care consultation team, whereas only about 20% reported having access to an outpatient palliative care practice. With most patients with cancer in the United States receiving care outside of highly resourced, NCI-designated academic cancer centers, we may not be ready in 2015 to promise consultative palliative care services to every patient with cancer at the time of diagnosis.
Further, palliative care is still a newer medical specialty, with about 250 fellowship training positions per year and only about 6,600 practicing, board-certified palliative care physicians in the country. Lupu and colleagues reported a shortage of about 10,000 palliative care physicians necessary to meet current needs in the hospital alone. Additionally, a study we presented at the Palliative Care in Oncology Symposium in 2014 indicated 62% of palliative care clinicians report burnout compared with 45% of medical oncologists. The resultant effect is half the workforce will leave through retirement or burnout within the next 10 years. The influx of 250 physicians at most cannot sustain this workforce to avoid a net negative of physicians in the field. Expanding services beyond the current state may be attainable in the short run, but without a plan different than the status quo, it is unsustainable into the future. The system, in its current form, is too stressed to realize an outpatient palliative care consultation for all patients diagnosed with any stage of cancer.
At this point, palliative care for advanced cancers is where the evidence base is. The three largest prospective studies of early palliative care integration all selected patients with advanced cancers. Delivery of palliative care to patients upstream of advanced disease, though recommended by consensus, has yet to demonstrate robust improvement in outcomes through large, prospective studies. If we look at palliative care as a novel intervention, then it is natural for it to follow the typical life cycle of a new drug tested in oncology — test first the later-line setting, then move earlier in the course of cancer progression. Trying to establish a change in the paradigm through the delivery of palliative care to patients with early-stage cancers — a change that our workforce can’t meet on an evidence base that does not yet robustly exist — may be a hard proposition to sell.
I believe wholeheartedly that all patients with cancer, independent of prognosis or stage, should receive high-quality palliative care. What I still wonder is, “by whom?” Training oncologists in the skills and knowledge of a higher level of palliative care practice is imperative because the current delivery systems, evidence base and foreseeable palliative care workforce do not seem to support a reality in which all patients with cancer can receive palliative care from the time of diagnosis from a palliative care-trained expert. Further, it is necessary to explore delivery models that leverage the skills, experience and expertise of other members of the oncology clinical team, such as nurses, social workers, chaplains, nurses’ aides, advance-practice providers and pharmacists. Lastly, building the specialty palliative care workforce by thinking creatively about who can be credentialed to practice will be necessary to fulfill the promises in oncology, and across all serious diseases.
References:
Bakitas M, et al. JAMA. 2009;doi:10.1001/jama.2009.1198.
Hui D, et al. JAMA. 2010;doi:10.1001/jama.2010.258.
Kamal A, et al. Abstract #87. Presented at: Palliative Care in Oncology Symposium; Oct. 24-25, 2014; Boston.
Lupu D, et al. J Pain Symptom Manage. 2010;doi:10.1016/j.jpainsymman.2010.07.004.
Temel JS, et al. N Engl J Med. 2010;doi:10.1056/NEJMoa1000678.
Zimmermann C, et al. Lancet. 2014;doi:10.1016/S0140-6736(13)62416-2.
Arif H. Kamal, MD, an oncologist and palliative medicine physician, is director of quality and outcomes at Duke Cancer Institute. He can be reached at arif.kamal@duke.edu.
Disclosure: Kamal reports no relevant financial disclosures.
Palliative care should be available for all patients with cancer based on need, regardless of disease stage.
Cardinale B. Smith
There are plenty of examples of patients who have advanced-stage illness who may not need palliative care, and examples of early-stage patients who do. I recently saw a patient who was diagnosed with stage IV lung cancer during lung cancer screening. It turned out he had an EGFR mutation and was asymptomatic. Once he started therapy with a targeted agent, his main symptom was a rash, which was easily controllable with topical creams. He did not need any specialty-level palliative care intervention. On the other hand, I have a patient with early-stage lung cancer who is receiving cisplatin — which is highly emetogenic — and who has been refractory to many antiemetics. This patient is someone who would perhaps benefit from more specialty-level palliative care. Palliative care is needs-driven and should be provided from the time of diagnosis and concurrently, as an added layer of support, with disease treatment.
The Center to Advance Palliative Care (CAPC) has guidelines for trigger-based referral for palliative care. We did a pilot project on our inpatient unit in which we evaluated the use of triggers as a basis for palliative care referral. One trigger was advanced cancers, but another was any-stage cancer with uncontrolled symptoms or re-hospitalization within 30 days. Palliative care automatically saw early-stage and advanced-stage patients, and both cohorts demonstrated decreased hospital admissions and improvements in symptoms.
The majority of randomized trials evaluating palliative care focus on patients with advanced cancers; however, I think that is primarily because most oncologists perceive that as an acceptable time to offer palliative care. That does not mean patients with earlier-stage disease can’t benefit. Depending on the disease, there are some cancers — even with an earlier stage — that have a high likelihood of recurrence. Having an early relationship with the palliative medicine physician makes treatment at this point easier. Studies should be conducted in the early-stage setting, as well as in survivorship models.
Unfortunately, there is a palliative care workforce shortage. This, however, should not be a reason to exclude patients who are most likely to benefit from specialty-level palliative care from receiving it. The Patient Centered Quality Care for Life Act (H.R. 1666, introduced April 23, 2013) aims to expand the research base, improve training and focus attention on health professionals, patients, public and private payers, and state and federal health officials to develop solutions and tools and model best practices for providing better palliative care. Additionally, there are great educational tools being developed that you can use on your smartphone to teach more generalist palliative care skills.
One of the biggest barriers that we face in palliative medicine is that it is often equated with hospice care. There is a misperception that patients who receive palliative care will no longer be able to receive curative-intent therapy or life prolonging-intent therapy, and that is not true. The purpose of palliative care is for us to help provide care for patients in conjunction with the primary oncologist, in both curative-intent treatment and life prolonging-intent treatment. Until oncologists are better educated on the tenets of palliative care, this is going to be one of the biggest barriers to its implementation. The only way specialty-level palliative care gets to see patients is referral base. If those doctors are not referring patients, then those patients are not going to be seen.
Reference:
Adelson K, et al. Abstract #37. Presented at: Quality Care Symposium; Nov. 1-2, 2013; San Diego.
Cardinale B. Smith, MD, MSCR, is an oncologist and palliative medicine physician at Icahn School of Medicine at Mount Sinai Hospital. She can be reached at cardinale.smith@mssm.edu. Disclosure: Smith reports no relevant financial disclosures.
Perspective
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Edward A. Copelan, MD, FACP
There is substantial misunderstanding on the part of many regarding the meaning of palliative care. I like the definition provided by the ONS. It clarifies that palliative care is a multidisciplinary approach to manage patient symptoms, coordinate care and help meet the patient’s goals. It is not limited to end-of-life care and does not always necessitate consultation with a specialist in palliative care. Based on this definition, the position statement is reasonable. Patients benefit and there is cost benefit in providing comprehensive care, including proficient symptom management.Again, using the provided definition, early integration of palliative care is important. Establishing good working relationships with the patient and family, managing symptoms early when they are usually easier to treat and establishing reasonable expectations are critical to providing high-quality care. A team-based integrative approach can help alleviate the frustrations of patients and families who often view medical care as fragmented and bewildering.
In most large hospitals, significant barriers to providing palliative care services do not exist, but in many smaller institutions — and in others in the outpatient setting — there may be limited access to multidisciplinary care, including specialists in palliative care. Undoubtedly, many providers focus on treatment of the disease — including cancer — and do not devote as much attention to managing symptoms or addressing the needs and expectations of patients and their families. Physician training and culture contribute. Educating providers as to the meaning, methods and effectiveness of palliative care is an important step in improving patient access.
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