The Washington Manual of Oncology, 3 Ed.

Palliative Care in Oncology

Anna Roshal

“The best care possible does not stop with excellent disease treatments; it includes concern for a person’s physical comfort, emotions and spiritual well-being.” Ira Byock, The Best Care Possible

 I. INTRODUCTION. The focus of palliative care is to achieve the best possible quality of life (QOL) for patients and their caregivers at any stage of serious illness. Its hallmark is a comprehensive, team-based interdisciplinary approach, emphasizing collaboration and coordination of care with other providers and across settings. According to the most recent WHO definition, “palliative care is an approach that improves quality of life of patients and their families facing problems associated with life-threatening illness, through prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual.”

1967. HISTORY OF PALLIATIVE CARE. The wider concept of palliative care began with the establishment of the hospice movement. The term “hospice” (from the same linguistic root as “hospitality”) can be traced back to medieval times when it referred to a place of shelter and rest for weary or ill travelers on a long journey. The name was first applied to specialized care for dying patients by social worker and physician Dame Cicely Saunders, who began her work with the terminally ill in 1948 and eventually went on to create the first modern hospice, the St. Christopher’s Hospice, in London in 1967.

 The first American hospice opened in 1974 in New Haven, Connecticut. In 1979, the National Hospice Organization was formed in the United States, and in 1982, the Health Care Finance Administration established the Medicare Hospice Benefit (MHB). Although at its inception hospice care was most often provided at specialized facilities, today most hospice care in the United States is delivered at home. Hospice care is also available in homelike hospice residences, nursing homes, assisted living facilities, veterans’ facilities, hospitals, and prisons. However, availability of hospice care is generally limited by its payments structure (capitated payments) and eligibility criteria, which generally do not allow patients to receive hospice care alongside with disease-modifying or life-prolonging treatments.

 Palliative care originated within the hospice movement and shares its philosophy as a well-care model based on interdisciplinary teams emphasizing that patient and family wishes and goals are recognized and respected. The first US hospital-based palliative care programs began in the late 1980s at a handful of institutions such as the Cleveland Clinic and Medical College of Wisconsin. Since then, there has been a marked increase in hospital-based palliative care programs—now numbering over 1,500—as well as recent developments in home-based palliative care and establishment of outpatient centers. In 2001, with the support of the Robert Wood Johnson Foundation, palliative care leaders from across the United States met to discuss the standardization of palliative care across settings with the goal of improving quality. In order to facilitate the discussion, the National Consensus Project was formed, which became a task force in 2003, under the organizational structure of the Coalition of Hospice and Palliative Care, which includes the American Academy of Hospice and Palliative Medicine (AAHPM), the Center to Advance Palliative Care (CAPC), the Hospice and Palliative Nurses Association (HPNA), and the National Palliative Care Research Center (NPCRC). Advanced Palliative Care Certification for hospitals was first offered by Joint Commission in 2011, to promote high standards in quality and adherence to published guidelines. To reflect specialized expertise and training required for the practice of palliative care, the American Board of Medical Specialties (ABMS) approved the creation of Hospice and Palliative Medicine (HPM) as a subspecialty of 10 participating boards. As a result of this approval, the first ABMS-recognized examination was administered in 2008. There are currently close to 200 HPM fellowships in the United States, and the specialty is rapidly growing. Despite this growth, many sources project severe shortages of HPM physicians in the coming years, emphasizing the need for wider education of other specialists, including oncologists, as well as primary care physicians, and midlevel providers in basic palliative care skills.

 III. PALLIATIVE CARE CORE PRINCIPLES According to the National Consensus Project, the following features characterize palliative care philosophy and delivery:

1. Care is provided and services are coordinated by an interdisciplinary team consisting of physicians, nurses, social workers, chaplains, and may also include pharmacists, psychologists, physical therapists, nutritionists, as well as other support specialists to meet patient and family physical, psychosocial, and spiritual needs.
2. Patients, families, and palliative and nonpalliative providers communicate and collaborate about care needs.
3. Services are provided concurrent with or independent of curative or life-prolonging care.
4. Patients’ and families’ hopes for peace and dignity are supported through the course of illness, through the dying process, and after death.

 Like hospice, palliative care aims to relieve suffering in its many forms and improve QOL, but it is applicable to a much broader patient population, including patients living with progressive, chronic conditions (i.e., AIDS, cardiovascular diseases, dementia, neurodegenerative conditions, metabolic diseases, renal or kidney dysfunction, and advanced malignancy), and acute, life-threatening illnesses or injuries (i.e., severe trauma, ICU admission, or acute leukemia) where the disease itself or its treatments pose significant challenges to the QOL and well-being of the patient and family.

 IV. RATIONALE FOR ONCOLOGY PALLIATIVE CARE. Despite multiple advances in oncology in recent years and decades, patients and caregivers still shoulder significant physical, psychological, spiritual, and financial burdens while dealing with cancer and its treatments. For example, in a recent large systematic review including over 25,000 patients with incurable cancers, including solid tumors and hematologic malignancies, pain was present in 71%, gastrointestinal symptoms (nausea, vomiting, or constipation) in 20% to 37%, dyspnea in 35%, fatigue in 74%, depressed mood in 39%, and anxiety in 24% (J Pain Symptom Manage 2007;34:94). These symptoms have a significant negative effect on QOL and are associated with worsened ECOG performance status. Unfortunately, symptom management and adequate control remains a challenge, even for patients with early stage malignancies and cancer survivors. A seminal research published in a recent study of 3,123 ambulatory patients with breast, colorectal, lung, or prostate cancer revealed that 33% were still receiving inadequate analgesic treatments (J Clin Oncol 2012;30:1980). Pain rarely occurs in isolation, with most patients experiencing a variety of symptoms that tend to occur at a similar time, a phenomenon recently dubbed symptom cluster (J Pain Symptom Manage 2011;42:1). Family caregivers of patients with advanced cancer also experience significant morbidity as a result of their role. In addition to reducing symptom burden and improving QOL for patients with cancer and their caregivers, palliative care clinicians can help bridge a communication gap surrounding prognostic information and documenting patient’s wishes and advance directives. Although the majority of advanced cancer patients and their family members report they desire realistic and timely information about the incurable or terminal nature of their disease, available data support that a large proportion does not receive this information until very late in the illness trajectory (J Clin Oncol 2010;28:4364). The reasons for this delay include the difficult nature of these discussions, time pressure, lack of training, prognostic uncertainties, and perceived negative effect on patients and families. Unfortunately, this lack of communication leads to an increased resource utilization at the end of life, increase in costs of care, and, most importantly, less good time spent with family and friends (JAMA 2008;299:2667).

1. EVIDENCE BASE FOR PALLIATIVE CANCER CARE MODELS
2. Inpatient consultation service. Investigators from the MD Anderson Cancer Center described clinical characteristics and outcomes of mobile interdisciplinary palliative consultation team in the setting of a comprehensive cancer center. They demonstrated that 28% of patients evaluated by a consult team showed symptom improvement within 24 hours and 38% within 72 hours after initial consultation. The consult team found an average of eight symptoms per patient, most commonly pain, delirium, and opioid side effects, such as excessive sedation, confusion, and constipation (J Palliat Med 2007;10:948). In a randomized multicenter controlled trial of inpatient palliative care team consultation versus usual hospital care for patients admitted with life-limiting illness including 27% of patients had cancer, there were decreased ICU stays, decreased hospital readmissions, and increased number of patients who completed advance directives in the palliative care group, although there were no differences in symptoms or QOL measures (J Palliat Med 2008;11:180).
3. Outpatient education and support interventions. The projects ENABLE and ENABLE II (Education, Nurture, Advise, Before Life Ends) investigated a nurse-led educational and support intervention in patients with advanced cancer in a rural NCI-designated comprehensive cancer center (Palliat Support Care 2009;7:75). Both demonstration project and subsequent randomized control trial, compared with usual oncology care, combined in-person sessions and telephone-based follow-up (Palliat Support Care 2009;7:75). Advance practiced nurses assessed patients utilizing NCCN distress thermometer and provided targeted and problem-solving resources based on identified areas of distress. In addition, with participant permission, nurses contacted their clinical team about issues requiring immediate attention. Patients in the usual care group were allowed to have unrestricted access to all oncology and supportive services available at the institution. Patients receiving intervention had higher scores for QOL (p = 0.02), and fewer incidence of depression (p = 0.02). Symptom intensity did not change significantly, although a trend toward lower intensity was noted (p = 0.06). The intervention did not affect hospitalizations, emergency room visits, or ICU days. Limitations of the study included lack of in-person contact and relatively low baseline symptom intensity reported in both groups of patients. A randomized trial of an innovative educational intervention, COPE (Creativity, Optimism, Planning, and Expert information), administered to patients simultaneously enrolled in phase I, II, and III therapeutic oncology clinical trials, and their caregivers was conducted at the City of Hope (J Palliat Med 2011;14:465). Similar to ENABLE model, this intervention focused on couching and guided problem solving around common sources of distress, including physical, psychological, social, and spiritual. Patients and caregivers in an intervention arm participated together in three educational sessions, led by trained instructors, during their first month of clinical trial enrollment, followed by six month follow-up period. Control arm received usual oncology care. Primary outcome measure was global QOL for patients and caregivers. Results indicated significantly slower rate of QOL decline for caregivers in the intervention arm, but no difference in QOL measures for patients. Limitations of this study included group-based intervention, rather than individual patient and caregiver visits. It was also not specifically mentioned how the information gained from the intervention was communicated to the patient’s primary oncology team.
4. Palliative home care. Investigators from Kaiser Permananente Medical Group (J Am Geriatr Soc 2007;55:993) assigned patients with life-limiting illness and less than one year expected survival, including 47% of patients with cancer, to usual care versus in-home palliative care, provided by interdisciplinary team, with the goals of improving symptom control and overall QOL. Usual care consisted of home health care as deemed appropriate by patient’s physicians and Medicare guidelines, including hospice services for patients who met hospice criteria. Although modeled on hospice care, intervention program did not require patients to forgo disease-modifying or potentially curative treatments, and allowed patients with estimated 12-months survival to participate. Palliative care physicians involved in the program took an active role of coordinating care with patient’s primary care physician and specialists to develop and implement a treatment plan. The study’s primary end points were satisfaction with care, place of death, utilization of acute care services, and overall costs of care. Investigators were able to demonstrate increased satisfaction with care at 30 and 90 days after enrollment (p < 0.05). In addition, patients receiving in-home palliative care utilized emergency rooms and acute care hospitals at a significantly lower rate, resulting in 33% overall decreased cost of care for patients enrolled in the intervention arm, versus usual care.
5. Early integrated outpatient palliative care clinic. Temel and colleagues (N Engl J Med 2010;363:733) conducted a groundbreaking randomized trial (1:1 randomization) of early palliative care integrated into standard oncology care versus standard oncology care alone in patients with metastatic non–small cell lung cancer. Patients were enrolled within 8 weeks from diagnosis, and were evaluated by palliative care team within 3 weeks of enrollment and at least monthly thereafter. Intention to treat analysis included 74 patients in the usual care arm, and 77 patients in the early palliative care arm. Patients in the control team could be referred to the palliative care team at the discretion of the treating oncologist, but did not cross over to the integrated palliative care group. The palliative care team consisted of board-certified physicians and specially trained advance practice nurses. The care was provided according to National Consensus Project for Quality Palliative Care guidelines and included symptom assessment and management, discussions about patient and family coping with the disease, and illness understanding and education. All patients were ambulatory and had ECOG PS 0-2 at the start of the study. Primary outcome was change in the QOL at 12 weeks determined by Functional Assessment of Cancer Therapy-Lung scale. Investigators also collected data on changes in mood, type of end-of-life care received (chemotherapy within 14 days of death, and use and timing of hospice care). Patients receiving early palliative care had significantly better QOL (p = 0.03), lower depression scores (p = 0.01), were less likely to receive aggressive end-of-life care (p = 0.05), and had longer median hospice stay (p = 0.09, 11 vs. 4 days) compared with standard oncology care group. In addition, more patients in the early palliative care arm had their resuscitation preferences documented in the ambulatory medical record (p = 0.05). In a post hoc analysis, median overall survival was significantly longer for those in the concurrent care arm (11.6 months vs. 8.9 months, p = 0.02), despite fewer patients receiving aggressive end-of-life care. Of note, although palliative care consultation was allowed in a control group at the discretion of the oncologist, only a small minority of patients (14%) in that group had any contact with palliative care team. The exact mechanism by which early palliative care leads to apparent improvement in survival remains unclear. Additional analysis of the data revealed that there was no significant difference between the groups with respect to the total number of regimens and time to the administration of second- or third-line chemotherapy. However, patients in the palliative care group were less likely to receive IV chemotherapy in the last 2 months of life, and any chemotherapy in the last 14 days (J Clin Oncol 2012;30:394). On the basis of this study and other randomized clinical trials, the American Society of Clinical Oncology published “Provisional Clinical Opinion: the Integration of Palliative Care into Standard Oncology Care” in February 2012 (J Clin Oncol 2012;30:880). It states: “it is the Panel’s expert consensus that combined standard oncology care and palliative care should be considered early in the course of illness for any patient with metastatic cancer and/or high symptom burden.” Muir and colleagues published their experience with a novel service delivery model, consisting of embedding pilot palliative care clinic into high-volume, fast-paced busy private practice oncology clinic (J Pain Symptom Manage 2010;40:126). As this was not a randomized trial, results were intended as demonstration of feasibility and potential benefit. Over the first two years of the services, 134 patients were referred for palliative care consultations. Diagnosis distribution was representative of general oncology practice, including 22% of patients with gastrointestinal cancer, 17% breast cancer, 13% with lung cancer, and 13% with hematologic malignancies. Palliative care consultations resulted in a reduction of the symptom burden as measured by ESAS (Edmonton Symptom Assessment System) by 21% over multiple visits. The authors were able to estimate that this model of palliative care delivery was able to provide substantial time saving for oncology practice (over 4 weeks during 2 years).

 VI. PRIMARY VERSUS SPECIALTY PALLIATIVE CARE. As the recognition of palliative care needs is increasing, so is the controversy over who should be managing those needs. Multiple models of specialized palliative care have been shown to improve outcomes, but in reality it might be impractical and unnecessary for every patient even with advanced cancer to receive care from a palliative care specialist, in addition to their oncology team. Therefore, certain primary palliative skills, such as basic management of pain, nausea, other symptoms, as well as basic communication and prognostication skills should be able to be delivered by oncologists. Other skills that are more complex and take specialized training to learn and apply, such as negotiating a difficult family meeting, addressing persistent distress, and managing difficult or refractory symptoms, are suited for consultation or comanagement with a palliative care specialist/team (N Engl J Med 2013;368:1173).

 VII. BARRIERS AND POTENTIAL APPROACHES TO PALLIATIVE CARE INTEGRATION INTO ONCOLOGY PRACTICE. Despite significant advances in palliative care research and practice over the last decade, significant barriers remain for integration of palliative care and cancer care across disease trajectory and in different settings where care might be provided. Many answered questions exist in regard to the feasibility of different models, availability of primary and specialized palliative care, standardization of the interventions, patient selection for inpatient and outpatient palliative care consultations, and financial models. Some of these barriers include physician knowledge and attitude toward their ability to provide symptom management and perception that palliative care is the same as hospice and end-of-life care.

VIII. HOSPICE

1. Eligibility criteria. Under Medicare, Medicaid, and most private insurance plans, a patient is eligible for hospice if his/her physician and the hospice medical director certify that he/she is terminal and has 6 months or less to live. The patient and caregivers must agree to the philosophy of hospice. That is, they must agree that the focus is on managing symptoms of the disease without the use of life-prolonging measures. The patient needs to have a 24-hour caregiver or be willing to come up with a plan with the hospice team for 24-hour care. The patient could hire 24-hour private-duty nursing care, enter a long-term care facility, arrange for friends or family to take shifts in the patient’s own home, or live with a family member. The patient does not have to sign a Do Not Resuscitate (DNR) order to be on hospice. It is the patient’s right to choose hospice and still remain full code. The patients may decide after initiating hospice to change their code status. The Medicare eligibility for hospice for patients with diagnosis of cancer is that the disease has distant metastasis at presentation or that the patient has progressed from an earlier stage of metastatic disease, or patient refuses further treatment of the disease. A patient is eligible for hospice with certain cancer diagnosis without evidence of metastasis. This includes small cell lung cancer, brain cancer, and pancreatic cancer. Patients may remain on hospice beyond 180 days (6 months) as long as criteria for hospice care are still met and a face-to-face encounter with a physician or nurse practitioner is performed by hospice team.
2. Funding. Hospice is covered by a specific MHB (Medicare Hospice Benefit). Most private insurance companies and Medicaid offer a similar benefit. When a patient signs for MHB, he or she is electing to have his or her Medicare Part A (hospital benefit) assigned to a Medicare-certified hospice (“Medicare-Certified Agency” or “MCA”). The hospice is then responsible for the patient’s plan of care and cannot bill the patient for services. The MCA receives a per diem rate from Medicare that covers all medications for pain and symptom management, durable medical equipment and supplies, nursing care, social services, chaplain visits, and other needed services. The current per diem rate is about $160 a day.

 The MHB does not cover private-duty nursing or the cost of room and board at a nursing facility. If the patient is dually eligible for Medicare and Medicaid, the hospice is funded by Medicare and the room and board is covered by Medicaid. If the patient is eligible only for Medicare, the family must pay privately for room and board in a nursing facility.

The MHB provides four levels of care for hospice patients:

1. Routine home care. Hospice services provided in the patient’s home or a nursing facility.
2. Inpatient respite care. Short-term inpatient admission (usually limited to five days) to promote caregiver well-being. Owing to the physical and psychological stress and strain experienced by the 24-hour care of the family member, respite care is essential. It may be for a few days or the patient may be transferred to a facility from the hospital setting.
3. Inpatient symptom management. Inpatient admission for more intensive palliative measures. Such admissions would be warranted for severe pain, intractable seizures, uncontrolled bleeding, and intractable nausea/vomiting due to gastrointestinal obstruction. Before admission, the medical director, primary physician, patient, and family discuss the purpose of the hospitalization. The hospice is still responsible for the plan of care and needs to be involved daily and at all levels of decision making in collaboration with the inpatient staff.

 The MHB limits how much active treatment a patient can receive and still be on hospice. The patient’s primary physician must discuss with the hospice program on a case-by-case basis the types of services that may be provided to a given patient without disqualifying him or her from hospice. Some measures, such as intravenous hydration, blood transfusions, tube feedings, paracentesis, and thoracentesis, may be appropriate for palliation, but must be approved by the hospice medical director first.

4. Bereavement care. A very important service for hospice families and caregivers is bereavement care. Bereavement services are provided by hospice programs for at least up to a year after the patient’s death. The services are provided by specially trained staff. Depending on the hospice, this service may be provided by the nurse, social worker, chaplain, or specially trained volunteers. Bereavement services include periodic mailings, phone calls, and home visits. Some hospices offer bereavement support groups, and some host annual memorial services. If the family requires additional counseling services, the hospice may choose to provide extended services or refer them to other resources in the community.

SUGGESTED READINGS

Teunissen SC, Wesker W, Kruitwagen C, et al. Symptom prevalence in patients with incurable cancer: a systematic review. J Pain Symptom Manage 2007;34:94–104.

Fisch MJ, Lee JW, Weiss M, et al. Prospective, observational study of pain and analgesic prescribing in medical oncology outpatients with breast, colorectal, lung, or prostate cancer. J Clin Oncol 2012;30:1980–1988.

Laird BJ, Scott AC, Colvin LA, et al. Pain, depression and fatigue as a symptom cluster in advanced cancer J Pain Symptom Manage 2011;42:1–11.

Keating NL, Beth Landrum M, Arora NK, et al. Cancer patients’ roles in treatment decisions: do characteristics of the decision influence roles? J Clin Oncol 2010;28:4364–4370.

Harrington SE, Smith TJ. The role of chemotherapy at the end of life: “when is enough, enough?” JAMA 2008;299:2667–2678.

Temel JS, Greer JP, Muzikansky A, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med 2010;363:733–742.