INTRODUCTION — Palliative care is an interdisciplinary medical specialty that focuses on preventing and relieving suffering and on supporting the best possible quality of life for patients and their families facing serious illness.
The primary tenets of palliative care are symptom management; establishing and implementing care plans in keeping with the patient’s values and preferences; consistent and sustained communication between the patient and all those involved in his or her care; psychosocial, spiritual, and practical support both to patients and their family caregivers; and coordination across sites of care.
Palliative care aims to relieve suffering in all stages of disease and is not limited to end of life care. Palliative medicine services, including setting patient-centered achievable goals for medical care and aggressive symptom management, should be routinely offered alongside curative and disease-modifying treatments for patients with serious illnesses [1,2].
The traditional model of medical care has been dichotomous, with curative or disease-modifying treatment offered initially and comfort care provided only when/if these measures are no longer appropriate (figure 1). However, most illnesses and personal goals do not lend themselves well to such dichotomous service models [3]. For example, heart failure is characterized by stable disease punctuated by acute exacerbations often requiring hospitalization (figure 2). During these exacerbations, life-prolonging treatments, such as diuretics, that also improve symptom burden are administered. Within an integrated model of medical care, palliative care is provided at the same time as curative or life-prolonging treatments (figure 1).
Hospice and Palliative Medicine is now recognized as a medical subspecialty by the American Board of Medical Specialties, as well as in Canada, England, Ireland, Australia, New Zealand, and many other European nations [4]. Other countries are in the process of developing certification for palliative care [5]. Clinicians who are specifically trained in palliative care provide in-depth pain and symptom management, communication regarding goals of care, and care coordination across settings and over time [6]. However, in order for the large and rapidly growing number of patients with advanced and serious illness to receive timely and high-quality palliative care, it is important that the core principles and practices of palliative care be incorporated into the practices of all clinicians.
To this end, multiple initiatives are now integrating palliative medicine education, evidence-based assessments, and treatment algorithms into the care of patients in the emergency room and intensive care unit, as well as oncology services [7] and other specialties that care for seriously ill patients [1,2,8,9]. Efforts to strengthen the palliative care knowledge and skills of all clinicians caring for the seriously ill (referred to as “generalist” or “primary” palliative care) through training [10] and use of checklists and other workflow supports [11] are increasing to address unmet palliative care needs [1,2,9,11,12]. (See "Primary palliative care".)
This topic will review the definition and benefits of subspecialist palliative care, outline the types of palliative care services and models of care available for adults, present criteria for a referral to palliative care, and outline the key goals of a palliative care consultation. An overview of evaluation in palliative care, primary palliative care, the philosophy and nature of hospice care, and pediatric palliative care are discussed elsewhere.
●(See "Overview of comprehensive patient assessment in palliative care".)
●(See "Primary palliative care".)
●(See "Hospice: Philosophy of care and appropriate utilization in the United States".)
●(See "Pediatric palliative care".)
DEFINITIONS — The definition of palliative care has evolved over time. From the opening of St. Joseph’s Hospice for the Dying in 1905 and St. Christopher’s Hospice in 1967 until the 1980s, palliative care was largely delivered through hospice programs. Initially, palliative care was seen as care provided for people with cancer who were not receiving active treatment and were in fact dying of their disease. It is now recognized that the principles of palliative care are just as applicable earlier in the course of any serious illness, even if that disease is potentially curable, and that palliative care can and should be provided alongside disease treatment. According to the World Health Organization (WHO) position statement, “this change in thinking emerged from a new understanding that problems at the end of life have their origins at an earlier time in the trajectory of disease” [13].
The following definitions reflect the modern concept of palliative care:
●The WHO defines palliative care as: “An approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual” [14].
●The Centers for Medicare and Medicaid Services (CMS) have endorsed the following definition: “Palliative care means patient and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering. Palliative care throughout the continuum of illness involves addressing physical, intellectual, emotional, social, and spiritual needs and facilitating patient autonomy, access to information, and choice” [15].
●The Center to Advance Palliative Care defines palliative care as: “Specialized medical care for people with serious illnesses…focused on providing patients with relief from the symptoms, pain and stress of a serious illness—whatever the diagnosis. The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness and can be provided along with curative treatment” [16,17].
Hospice, as defined in a statute by the Medicare hospice benefit [18], is a health care delivery system under which support and services are provided to a patient with a terminal illness where the focus is on comfort rather than curing an illness [19]. Patients electing hospice must agree to give up insurance coverage for continued medical treatment of the terminal illness, and two providers must agree that the patient will die within six months if the disease follows its usual course. Thus, hospice can be considered a program that delivers palliative care to patients at the end of life, while palliative care can be appropriately offered to patients at any time along the trajectory of any type of serious illness, concurrent with curative, restorative, and any life-prolonging therapies [20]. While all care that is delivered by hospices can be considered palliative care, not all palliative care is delivered by hospice programs.
RATIONALE FOR PALLIATIVE CARE
Overview — The aging of the population, success of high technology medicine at prolonging the lives of those who remain seriously ill, and the increasingly fragmented medical system make it difficult for clinicians to provide the full range of services required by patients with serious illness and their families [21]. A multicenter study of over 9000 seriously ill patients found that pain, dyspnea, anxiety, and depression were common and distressing symptoms among seriously ill patients hospitalized in United States tertiary care centers [22,23]. When initiated alongside disease-modifying and even potentially curative treatment, palliative care improves clinical and quality of care outcomes [24-38].
Palliative care strives to assist patients with a serious life-threatening illness in achieving the following goals [39,40]:
●Adequate control of pain and other symptoms
●Achieve a sense of control
●Relieve burden on family members and strengthen relationships
●Gain a realistic understanding of the nature of the illness and what to expect in the future
●Understand the pros and cons of available treatment alternatives and weigh them in the context of the patient’s goals and values
●Name decision makers in case of loss of decisional capacity
●Have financial affairs in order
Symptom management — Multiple studies have shown that, across a range of serious illnesses (cancer, dementia, end-stage kidney disease, cardiopulmonary failure), palliative care services improve patients’ symptoms and the quality of their care, improve coping skills, allow patients to avoid hospitalization and to remain safely and adequately cared for at home, increase utilization of hospice, lead to better patient and family satisfaction, and significantly reduce prolonged grief and posttraumatic stress disorder among bereaved family members [24,41-50].
Decreased cost — Palliative care also lowers costs by delivering care matched to patient and family needs, thus enabling avoidance of unnecessary hospitalizations, diagnostic and treatment interventions, and intensive and emergency department care at the end of life [25,51-57]. Among patients hospitalized in intensive care units, benefits of early proactive palliative care involvement include shorter length of stay [58]. (See "Palliative care: Issues in the intensive care unit in adults", section on 'Palliative care services in the ICU'.)
Although the American Society of Clinical Oncology (ASCO) and the Institute of Medicine both advise against intensive treatments at the end of life [1,59], many patients with terminal cancer continue to receive such services. In a study of 48,937 patients with cancer (99 percent male) enrolled in Medicare and the Veterans Health Administration, 59 percent received one or more intensive services (hospital admission, intensive care unit stay, chemotherapy, two or more emergency department visits, or hospice for fewer than three days) in the last month of life [60]. These services were associated with substantial cost to both patients and the health care system.
The economic benefits of palliative care consultation for hospitalized adults with serious illness were shown in a meta-analysis of six studies (a total of 133,118 patients with cancer; heart, liver, or kidney failure; chronic obstructive pulmonary disease; AIDS/HIV; or selected neurodegenerative conditions), in which 93 percent were discharged alive and 3.6 percent received an inpatient palliative care consultation [61]. Regardless of diagnosis, palliative care consultation was associated with a significant reduction in hospital cost (-$3237, 95% CI -$3581 to -$2893), and the savings were even higher for patients with cancer (-$4251, 95% CI -$4664 to -$3837). The reduction in cost was greater for those with four or more comorbidities than for those with two or fewer.
Effect on survival — There is some evidence that palliative care may improve survival.
In a landmark study, patients with newly diagnosed metastatic non-small cell lung cancer who were randomly assigned to early palliative care integrated with standard oncologic care had a better quality of life (QOL), fewer depressive symptoms, and longer median survival (11.6 versus 8.9 months, p = 0.02) than those who were assigned to oncologic care alone [26]. The ambulatory palliative care assessment performed in this trial focused on symptom management, patient and family coping, and illness understanding and education (table 1) [62]. In a later analysis of the same trial, patients who had received early palliative care received the same number of chemotherapy regimens as did those in the control group, but they were less likely to have chemotherapy continued close to death or to be hospitalized near end of life, and more likely to enroll in hospice for a longer duration [63]. (See "Overview of the initial treatment of advanced non-small cell lung cancer", section on 'Palliative care'.)
However, in a retrospective cohort study among 23,154 patients (98 percent men) with lung cancer (stages IIIB and IV) in the Veterans Affairs health care system, a palliative care encounter had differing associations with survival based on timing relative to cancer diagnosis [64]. Palliative care was associated with increased mortality when received between 0 and 30 days after diagnosis (adjusted hazard ratio [HR] 2.13, 95% CI 1.97-2.30) but decreased mortality when received between 31 and 365 days after diagnosis (adjusted HR 0.47, 95% CI 0.45-0.49). This study suggests that palliative care may improve survival among patients who are not imminently dying and are able to survive the initial month after diagnosis, although a causative role cannot be established by this observational study.
Whether there is a survival benefit for early integration of palliative care in other palliative care populations is unclear. A survival benefit for early initiation of palliative care has been suggested by some randomized trials (including those involving patients with cancer, advanced heart failure, and nonmalignant pulmonary disease) [32,36,65] but not by others [25,30,33,37,66,67]. A systematic review of seven randomized trials totaling 2184 patients concluded that there was no association between palliative care and survival (hazard ratio for death 0.90, 95% CI 0.69-1.17) [35]. However, only one of the trials was rated as having a low risk of bias.
Integration with curative treatment — Randomized trials have shown that comprehensive outpatient palliative care can be successfully delivered alongside disease-modifying treatment, including potentially curative treatment [27,28,34]. This has been shown both in the hospital and ambulatory setting. The benefits of delivering palliative care concurrent with potentially curative treatment were shown in a randomized trial of inpatient palliative care consultation (twice-weekly visits mainly focused on management of physical and psychological symptoms) versus usual transplant care in 160 adults with hematologic malignancies undergoing autologous or allogeneic hematopoietic cell transplantation [34]. At two weeks, the intervention group had less of an increase in depression, anxiety, and overall symptom burden, and a smaller decrease in QOL; at three months, the intervention patients maintained a higher QOL and less depression, although there were no significant differences in anxiety, fatigue, or symptom burden.
Given these benefits, there is a need to change the paradigm for management of patients with serious life-threatening diseases, including but not limited to patients with advanced cancer [47]. Care should include an earlier and more thorough assessment of patients’ options, concerns, goals, and preferences, and be tailored throughout the continuum of their illness to include meticulous symptom management, family support, and attention to QOL issues in addition to disease-modifying therapies [68]. A year 2016 updated provisional clinical opinion from the ASCO recommends that dedicated palliative care services should be integrated into the care of inpatients and outpatients with advanced cancer early in the disease course, concurrent with active treatment [1].
PALLIATIVE CARE SERVICES
Treatment of symptoms — A primary role of palliative care is the relief of pain and other physical, psychological, and emotional symptoms. A meta-analysis of 19 studies concluded that palliative care and hospice teams improved patients’ pain and other symptoms [45].
Patients with advanced diseases associated with cognitive impairment, such as dementia, are at substantial risk for undetected or undertreated pain. One study of patients with pain from a hip fracture demonstrated markedly lower analgesic dosing in dementia as compared with cognitively intact patients both pre- and postoperatively [69]. Pain is a potent precipitant of delirium, and adequacy of pain management is associated with significantly reduced risks of this common and serious hospital complication. Palliative care interventions can improve the management of pain and other symptoms in patients such as these [44,45]. This was shown in a study of 592 patients who received a palliative care consultation, in which 87 percent had an improvement in pain or other symptoms [70].
Principles of pain management for adults with cancer, end-stage kidney disease, and terminal heart failure are addressed in detail elsewhere, as is an overview of symptom control in the terminally ill cancer patient. (See "Assessment of cancer pain" and "Overview of cancer pain syndromes" and "Cancer pain management: General principles and risk management for patients receiving opioids" and "Kidney palliative care: Principles, benefits, and core components" and "Palliative care for patients with advanced heart failure: Indications and systems of care" and "Overview of managing common non-pain symptoms in palliative care".)
Establishing goals of care — Working with patients and their families or other loved ones to determine priorities for care that inform all care plans and are clearly understood and honored by all involved clinicians is essential to the provision of appropriate and beneficial medical care. Skilled communication is at the core of establishing goals of care, yet studies have shown that patients are not satisfied with their experiences communicating with clinicians [39,71] and the main concern of family members of persons who died in the hospital is not enough time talking with their doctors [72]. In the SUPPORT trial, only 47 percent of clinicians caring for adults who were hospitalized with one or more of nine life-threatening diagnoses knew their patients’ preferences for resuscitation [22]. Despite decades of pressures to increase advance care planning conversations in the United States, a survey conducted in 2016 found that 71 percent of physicians stated they had never received training on communication with patients about goals of care, roughly half said they felt unprepared to conduct them, and two-thirds had no formal system of reminders or standard documentation templates to support the work [73].
Palliative care providers are trained in the communication skills necessary to negotiate goals of care based upon the patient’s values and wishes, and to ensure that the care subsequently provided is concordant with these goals. A suggested approach to discussing goals of care is provided separately. (See "Discussing goals of care".)
Psychosocial support — Psychosocial, spiritual, and bereavement support are key elements of palliative care. Most programs utilize an interdisciplinary team that may include social workers, chaplains, psychiatrists, psychologists, and/or bereavement counselors. (See "Psychosocial issues in advanced illness" and "Bereavement and grief in adults: Management".)
Psychological distress, depression in particular, is prevalent in patients with serious illnesses. Depression is associated with higher utilization of health care services as well as significantly increased mortality rates. Depression, with a prevalence rate of 15 to 60 percent in patients with a terminal illness [74], is mistakenly but widely felt to be a normal concomitant of illness by health professionals, leading to under-diagnosis and under-treatment. Patients with advanced and chronic disease are as likely to benefit from antidepressant therapy [75] and supportive psychotherapy and counseling as other populations. Depression may be due to physical symptoms, stress of prolonged illness, existential distress, or concern for family members. Untreated depression is associated with decreased functional capacity, poorer quality of life, and a desire for hastened death. Studies have shown that treatment of physical symptoms can improve depression [25,26]. (See "Assessment and management of depression in palliative care".)
Another essential element of palliative care is assessing and attending to the needs and concerns of family members and caregivers. Studies have shown that most family caregivers of hospitalized patients sustain mild to moderate stress [76]. Caregivers who report emotional strain are at substantially higher risk for their own serious illness and death [77]. The leading cause of personal bankruptcy in the United States is providing care for a seriously ill loved one, regardless of insurance status. Families support seriously ill Americans from their own savings at an estimated half a trillion dollars every year. Successful palliative care interventions require attention to the needs of both the patient and the constellation of family members and caregivers surrounding them [78,79].
Complicated grief in survivors has been identified as a distinct disorder that results in severe debilitation and negative health consequences. (See "Bereavement and grief in adults: Management".)
Spiritual care is a core domain of palliative care [80]. Spirituality plays an important role in coping with serious or terminal illnesses; spiritual distress is highly correlated with a desire for a hastened death. The available data suggest both the central importance of spiritual concerns to seriously ill patients and families, and the widespread failure of health care professionals to address this domain, perhaps because of lack of training or spiritual care capacity in many clinical settings [81,82]. (See "Overview of spirituality in palliative care".)
Studies indicate that the majority of patients want their health care professionals to ask about spiritual or religious beliefs if they became gravely ill and that they benefit from discussions of these issues with their physicians and from the provision of spiritual care [83]. Guidelines for interprofessional spiritual care as well as an implementation model for spiritual care have been developed by a consensus conference of experts in the United States [84]. (See "Overview of spirituality in palliative care".)
Coordination of care — Seriously ill patients and their families or other loved ones face major challenges in navigating and understanding their care plan(s) within a complex and fragmented medical system requiring negotiation between multiple settings, specialists, and diagnostic and treatment interventions. Palliative care programs, because of their interdisciplinary approach, assist patients and families in understanding and regaining control over their care plans and in receiving further care in the setting most appropriate to their needs and resources. Appropriate settings may include home care, nursing homes, hospice care, and other inpatient facilities.
Programs that provide coordinated care and transition management, such as the Program of All-Inclusive Care for the Elderly (PACE) or the Care Transitions Intervention (CTI), decrease admissions to nursing homes and hospitals and increase rates of care matched to patient-determined goals for care [85-87].
MODELS OF PALLIATIVE CARE DELIVERY — Palliative care services can be provided in the hospital, ambulatory setting, nursing home, or at home. In addition, palliative care for homeless persons has become an important objective for this population. (See "Palliative care: Issues in the intensive care unit in adults" and "Palliative care: Nursing home" and "Palliative care delivery in the home" and "Palliative care for adults experiencing homelessness".)
Palliative care services provided by physicians and/or advanced practice nurses in the United States are reimbursed by government and commercial insurance vehicles. Services may be delivered under the specifications of hospice, if the patient has a prognosis of six months or less and is willing to focus care on palliative and comfort-oriented services as opposed to life prolonging treatments. The hospice model is covered by most payers including Medicare, Medicaid, and commercial insurers. (See "Hospice: Philosophy of care and appropriate utilization in the United States", section on 'Structure'.)
Hospital palliative care programs include palliative care consultation teams and dedicated inpatient palliative care units. Non-hospital, community-based palliative care programs include nursing home-, office-, and home-based palliative care programs.
Hospital-based palliative care programs — Hospital palliative care programs in the United States developed from national efforts to improve physical, psychosocial, and spiritual suffering of patients and families who are hospitalized with serious illnesses [88]. The number of hospital-based palliative care programs has increased rapidly [89], and as of 2015, programs were in place at more than 82 percent of United States hospitals with more than 50 beds [90]. In 2015, palliative care consultations were provided to an average of 4.8 percent of hospital admissions by the more than 400 palliative care programs participating in the National Palliative Care Registry [91-93].
Models of hospital-based palliative care services include palliative care consult services, dedicated palliative care units, and integrated palliative care models.
●Consultation services — Most palliative care consultation teams are interdisciplinary and consist of physicians (including generalists and specialists, as well as psychiatrists), nurse practitioners, registered nurses, social workers, psychologists, chaplains, pharmacists, and volunteers. The palliative care team provides expert pain and symptom management, education and communication about achievable goals for care, support for decisions matched to patient and family goals, psychosocial and family support, and coordination of care. The goal of the consultation service is to support the referring clinician. Typically, the consultation team provides recommendations to the primary attending physician (table 2).
●Inpatient palliative care units — In inpatient palliative care units, palliative care providers either may assume primary responsibility for patients or continue in a consulting mode, as desired by the primary physician. Transfer to an inpatient palliative care unit is most appropriate for the following indications: patients who have difficult-to-control symptoms; medical needs that cannot be optimally managed in another setting; distressed families in need of a higher level of support; need for transfer out of a critical care setting; and patients who are imminently dying. A high-volume palliative care unit may reduce in-hospital care costs by matching treatments provided to patient and family-determined goals for medical care. In one study, a dedicated palliative care unit reduced daily hospital costs by 74 percent compared with usual care patients [42].
●Comanagement models — A growing number of integrated comanagement models are being developed to enhance palliative care within different practice settings. Successful models for palliative medicine integration into the intensive care unit, and most recently, the surgical and trauma intensive care units exist in many hospitals [94,95]. (See "Palliative care: Issues in the intensive care unit in adults", section on 'Models for palliative care provision'.)
In addition, models of integrating palliative care into emergency departments include palliative care triggers for consultation, education of emergency department staff on symptom management, advance care planning and psychosocial support and when and how best to access palliative medicine specialists for consultation [33,96].
A few studies have compared outcomes with different palliative care models. In a phone survey of US Veterans Administration (VA) medical centers that offered both models of inpatient care, family members of patients in a palliative care unit were significantly more likely to report excellent care in the last month of life when compared with families of patients who received only a palliative care consultation [46]. The palliative care unit group also scored highest in three of four process measures (do not resuscitate order at the time of death, documented chaplain visit, and bereavement contact after the patient’s death). In another study comparing patients admitted to a palliative care unit with those receiving palliative care consultation services, patients in the dedicated unit had significantly worse performance scores, required greater complexity of care, and were more likely to die [97]. Self-rated satisfaction with care for dying patients was higher for patients in the palliative care unit.
The optimal palliative care model for an individual institution is determined by weighing several factors [98], and coexistence of various models within an institution is ideal, when the institution is large enough to support the required resources [97]. A dedicated unit offers direct control over implementation of the palliative care team’s recommendations, the presence of a skilled interdisciplinary staff, and a care setting that is designed to meet the needs of seriously ill patients and their overwhelmed families. A consultative team, on the other hand, is less resource intensive, able to deliver care to many more patients and their families, and may be able to promote the importance of the palliative care approach to a wider audience.
Nursing home mode of palliative care — Nursing home patients typically have multiple advanced illnesses, functional dependence, cognitive impairment, and symptom burden. Programs are being developed to determine how palliative care can address the needs of this population. A study looking at palliative care consults in nursing homes in four states found that 59 percent of the 286 nursing homes studied had introduced palliative care consults by 2010 and that these consults resulted in a significant reduction in hospitalizations in the last 30 days of life [99]. Further research on nursing home palliative care models has found that palliative care consultations led to lower rates of hospitalization and burdensome transitions, as well as reduced symptom burden [100]. These consultations had the most impact when they occurred furthest from death, illustrating the importance of integrating palliative care early [101,102]. (See "Palliative care: Nursing home".)
Community-based palliative care services — Most people in need of palliative care are neither dying nor hospitalized, and they reside in homes and in long-term-care settings where access to palliative care services is variable and unreliable. Community-based palliative care programs are necessary to provide important continuity of care for patients who are discharged from the hospital after being seen by an inpatient palliative care consultation service. In addition, community palliative care providers can act as consultants for patients who are not hospitalized but who have serious chronic illnesses, symptom distress, and difficulty managing complex treatment regimens. Community palliative care teams provide pain and symptom management, psychosocial and family support, skilled communication about patient and family concerns and priorities and how to address them, and coordination of home care needs, including housing, food, transportation, and equipment. Patients receive palliative care in conjunction with life-prolonging disease treatments. These services can be provided within the home, within a nursing home, within a palliative care outpatient practice, or through embedding or integration of a palliative care team within an existing outpatient primary care or specialty practice. (See "Palliative care delivery in the home".)
A 2019 survey of community-based palliative care services in the United States found 890 programs serving over 3000 discrete care sites. Two-thirds of these programs provided palliative care in patient’s own homes, about half in office or clinic settings and 28 percent in long-term care facilities. Among home-based palliative care services, half were sponsored by hospice agencies and the other half by health systems [103].
When initiated early in the disease course, community palliative care improves clinical and quality of care outcomes, reduces crises and the associated need for acute interventions, makes it more likely that the patient will die in their own home, and may improve survival, although the available data are inconsistent, and there is a lack of controlled clinical trials addressing these issues [26,31-33,65,104-110]. A systematic review of home-based palliative care interventions for patients with advanced cancer (six observational and two interventional studies) concluded that 44 to 90 percent of patients died at home, that studies including survival and quality of life endpoints had divergent outcomes, and that the benefits of palliative care consultation were most convincing for symptom control, especially pain and dyspnea [111].
Because of the known benefits of early palliative care interventions, palliative care services and models of comanagement are increasingly present within outpatient practices, such as cancer centers. Similar to the hospital-based integrated models of palliative care discussed above, the goal is to offer concurrent palliative care alongside specialist care for patients with advanced and serious illness. Integration of palliative care in outpatient cancer centers, either through co-located teams or through use of palliative care processes, algorithms, and performance metrics is rapidly becoming a standard of practice, in part as a result of a seminal clinical trial that included over 150 patients with metastatic lung cancer randomly assigned to a palliative care intervention or standard care [26]. The utilization of early palliative care resulted in a better quality of life, significantly less depressive symptoms (16 versus 38 percent), and significantly improved overall survival (12 versus 9 months) [26]. A 2021 trial of integrated palliative care during treatment for acute myelogenous leukemia in adults found sustained improvements in quality of life, depression, anxiety, and posttraumatic stress disorder when compared with usual care [112].
Home-based palliative care programs can provide services to patients when symptom burden and mobility challenges make transport to other settings challenging. Home visits also provide unique insight into a patient’s functional status, support system, medication adherence, and family caregivers. In addition, many people with chronic serious illness prefer to receive care in the home as opposed to a hospital or office setting. Home-based palliative care programs have been shown to decrease hospital utilization, lower costs, and increase hospice utilization [113,114]. One study looking at the impact of a home-based palliative care program in a Medicare Shared Savings Accountable Care Organization found that home-based palliative care delivered by a team of nurses, social workers, volunteers, and palliative care physicians led to a significant decrease in costs (35 percent reduction in Medicare A costs, 37 percent reduction in Medicare B costs) and hospitalizations (34 percent reduction in hospital admission), and an increase in hospice utilization and length of stay (35 percent increase in hospice enrollment, 240 percent increase in hospice length of stay) during the last months of life [113]. In addition, the Independence at Home (IAH) demonstration, a Medicare shared savings demonstration, comprised of 15 home-based primary care practices, has shown that home-based primary care both improves health outcomes and decreases expenditures for Medicare patients with multiple chronic conditions [115]. In addition to fewer hospitalizations, patients participating in the IAH demonstration were more likely to have their treatment preferences documented by providers. (See "Palliative care delivery in the home".)
Hospice model of palliative care — Hospice is a model for delivery of palliative care for patients at the end of life when curative or life-prolonging therapy is no longer beneficial. The modern concept of hospice, as established by Dr. Cicely Saunders of St. Christopher’s Hospice in England in 1967, has now spread throughout the world.
The United States hospice model restricts eligibility to persons with a two-physician-certified prognosis of under six months who are willing to give up coverage for disease treatment. Models providing hospice services to patients continuing to receive treatments with curative intent exist in pediatrics and in the Veterans Administration system and have been tested as part of the CMS Medicare Care Choices Model since 2016. These models provide individuals with serious illness greater flexibility and ideally provide a means for patients and caregivers to benefit from hospice services earlier in the illness trajectory [116]. Some benefits and challenges of these programs are discussed further elsewhere. (See "Hospice: Philosophy of care and appropriate utilization in the United States".)
By Medicare statute, hospices must provide 24/7 coverage, interdisciplinary team care, coverage of medications for symptom management, and durable medical equipment. Hospice care can be provided in any setting, predominantly in homes but also in hospitals, assisted living facilities, nursing homes, and freestanding hospice inpatient facilities. Functionally dependent or cognitively impaired patients who pose high and prolonged burdens of family caregiving are more likely to be referred for inpatient hospice than home care compared with other hospice populations [117].
The philosophy of hospice care, services provided by hospice, and its advantages and disadvantages, are discussed in detail elsewhere. (See "Hospice: Philosophy of care and appropriate utilization in the United States".)
IDENTIFYING PATIENTS APPROPRIATE FOR A PALLIATIVE CARE ASSESSMENT — A 2011 consensus statement from the Center to Advance Palliative Care proposed criteria for identifying patients in need of palliative care assessment in the hospital setting (table 3) [8]. A more recent study using standardized screening criteria (advanced solid tumor, prior hospitalization within 30 days, hospitalization for longer than seven days, and active symptoms) for palliative care consultation among hospitalized cancer patients found significant reductions in 30-day readmissions and earlier utilization of hospice and other home care services [118].
The palliative care needs of patients meeting one or more of these criteria should be addressed by their primary medical team, with consultation by palliative care specialists when necessary to assist with time-intensive complex decision-making regarding goals of care and treatment options, to make recommendations regarding pain and symptom management, and to help address complicated family, psychosocial, spiritual, and social issues.
There is less consensus for criteria in the outpatient setting, although proposed consensus-based guidelines are available from several groups:
●Based on research using the Health and Retirement Study, patients with the combination of functional impairment, one or more hospital or nursing home stays in the prior 12 months, and one or more serious illnesses had a subsequent 12-month risk of hospitalization of 50 percent and a mortality rate of 2 percent [119]. Other important risk factors for hospitalization or death that may indicate the need for a specialty palliative care consultation include cognitive impairment, exhausted and overburdened family caregivers, and poorly controlled symptoms.
●Consultation to a palliative care specialist team should also be considered for patients who have poorly controlled physical or emotional symptoms, frequent visits to the emergency room, admission to hospital or the emergency department from a nursing home, one or more hospital admissions in 30 days, a prolonged hospitalization and/or a prolonged intensive care unit stay, or issues related to unclear or unrealistic goals of care [8].
●Other proposed criteria include spiritual or existential crisis, request for a hastened death, delirium, spinal cord compression or brain or leptomeningeal metastases, or an advanced cancer diagnosis with an estimated median survival of one year or less [120].
●An affirmative answer by the primary treating clinician to the consideration (or “surprise question”): “Would you not be surprised if the patient died within 12 months, or did not live to adulthood” might also guide the identification of patients who would benefit from a palliative care assessment [121-125].
However, the utility of this question is probably greater in cancer patients than in those with a non-cancer diagnosis. A meta-analysis of 16 studies (including patients with cancer, heart failure, end-stage kidney disease, respiratory disease, and critical illness, and those in a primary care practice) concluded that, as a predictor of death at 6 to 18 months, the “surprise question” performed poorly to modestly, with worse performance in non-cancer illness [122]. The pooled prognostic characteristics across all disease categories were sensitivity 67 percent (95% CI 55-77 percent), specificity 80 percent (95% CI 73-86 percent), positive predictive value 37 percent (95% CI 30-45 percent), and negative predictive value 93 percent (95% CI 91-95 percent). There was significantly worse discrimination in patients with non-cancer illness compared with cancer patients (positive predictive value 31 [95% CI 25-38 percent] versus 47 percent [95% CI 36-58 percent]). However, it should be noted that poor short-term prognosis does not equate to unmet palliative care needs [126].
●At least four diagnostic tools have been developed to assist in the early identification of patients likely to have intensive health care service needs who are appropriate for a palliative care consultation in general practice (the Gold Standards Framework Prognostic Indicator Guidance [PIG] [127], the Supportive and Palliative Care Indicators Tool [SPICT] [128], the Palliative Necessities CCOMS-ICO [NECPAL] [129], and the RADbound Indicators for Palliative Care Needs [RADPAC] [130]), but none are sufficiently validated (particularly in American populations) to be useful in clinical care [131].
●The National Comprehensive Cancer Network (NCCN) initially released guidelines on Palliative Care for patients with cancer in 2014, since updated regularly, in which they provided criteria for appropriate patients for subspecialty palliative care screening [132]. These include patients with any:
•Uncontrolled symptoms
•Moderate-to-severe distress related to their diagnosis and treatment
•Serious comorbid physical and psychosocial conditions
•Life expectancy ≤6 months
•Concerns about their course of disease and/or their treatment options (including if these are expressed by their family)
In addition, a referral to palliative care should be initiated for any patient and/or family who requests it. While these guidelines are specific to patients with cancer, we believe that they are reasonable criteria for other patients with a serious, life-threatening or potentially terminal condition.
An important point is that regardless of whether a specialty palliative care consultation is pursued, primary care physicians should use these issues to focus attention on palliative care needs.
PERCEPTIONS OF PALLIATIVE CARE AND INTER-INDIVIDUAL VARIATION IN PREFERENCES — While the need for and benefits of palliative care have been universally recognized, the specific palliative care needs and goals of individual patients are more challenging to identify [133]. For example, while the Medicare hospice benefit was designed to enable patients with a preference for home care and an almost exclusive focus on comfort measures, this goal is not universally shared among patients or providers. As an example, one study reported that as few as 35 percent of patients want to die at home [134]. Furthermore, up to 48 percent of patients in this study considered access to all available treatments as an important aspect of palliative care at the end of life, regardless of the chance of recovery. A systematic review of Physicians Orders for Life Sustaining Treatment (POLST) outcomes found that only one-third of documents opted for the lowest intensity of care [135]. A 2010 review of guidelines and policies from the United States, United Kingdom, Canada, and Australia confirmed the paucity of uniform understandings of patient expectations and clinical standards for palliative care [136]. The authors reported that, “palliative care staff have to continuously adapt their model of caring to the specific needs and values of each patient”, which emphasizes the importance of individual preferences. It can be reasonably concluded, then, that many attributes of quality palliative care can be revealed only through careful individual assessment in specific patients [137]. Some of the issues that may influence how palliative care is perceived are discussed below.
Identification of distressing symptoms — The degree to which symptoms may cause distress, and hence be triggers for a palliative care consultation, may not be entirely clear to providers. This was shown in one study; over 340 patients with inoperable lung cancer were assessed with quality of life and symptom questionnaires and also were asked the question “what do you find most distressing at present” [138]. Among the major results were that:
●Over-arching, rather than specific causes of, distress were reported by 26 percent of patients
●Less than 60 percent of concerns reported as “most distressing” were identified by the questionnaires used
Even when a distressing symptom is identified, however, patients do not necessarily desire the same approach to management. This was shown in another study that evaluated the experience of pain at the end of life in 988 terminally ill patients [139]. While half of these patients reported the presence of moderate or severe pain, of those who saw their primary care physician for the treatment of pain in the prior four weeks (n = 514), only 30 percent wanted more treatment for pain; 9 percent requested to reduce or stop analgesic treatment.
Barriers to referral — Barriers to referral for palliative care are present in both patients (and their families) as well as providers [140,141]. These are illustrated in the following studies:
●One public opinion poll conducted in 2011 and repeated with the same results in 2019 by the Center to Advance Palliative Care (CAPC) found that more than three-quarters of the sample had never heard of palliative care [140]. Once educated about the concurrent nature of palliative care as an added layer of support for quality of life, more than 90 percent of those polled wanted palliative care for themselves or a loved one in the face of a serious illness, felt it was important that patients and their loved ones were educated about palliative care, and felt it was important that all hospitals offered palliative care services. Despite this high level of public endorsement of the value of palliative care, two main barriers were identified:
•Low awareness of palliative care services among patients and their families
•The tendency of clinicians to falsely equate palliative care with end of life and hospice care
●A separate poll of United States physicians identified their concerns about incorporating palliative care, including [141]:
•Concern that introducing palliative care could interfere with therapy directed at extending life as long as possible (42 percent)
•Inadequate patient resources (78 percent)
•Issues related to a perceived lack of reimbursement for palliative care and/or loss of reimbursement from discontinued disease treatments (82 percent)
•Shortage of palliative care physicians and services (78 percent)
In addition, this survey identified gaps in the education of physicians in palliative care during medical school correlated with physician age. The majority (73 percent) of physicians age 39 or younger reported exposure to palliative care during medical school, while only 36 percent of those ages 40 to 49, 23 percent of those ages 50 to 59, and 6 percent of those age 60 or older were exposed to palliative care during training.
●Another study conducted a survey of almost 170 patients with advanced cancer to evaluate both unmet needs and the interest they had in palliative care services [142]. Over 60 percent of patients reported an unmet need, primarily characterized as psychological/emotional or symptom-specific, and both were significantly associated with self-perceived need for palliative care services. The presence of unmet needs was not associated with patient initiation of a request for these services. However, patients were quite willing to proceed with a palliative care consult if it was suggested by their oncologist.
Communicating with patients — Limited data suggest that communication about palliative care may improve openness and access to palliative care:
●In the CAPC/ACS poll discussed above, two definitions of palliative care appeared to have a positive impact on how it was perceived [103,140]:
•“Palliative care is specialized medical care for people with serious illnesses. This type of care is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness — whatever the diagnosis.”
•“The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a team of doctors, nurses, and other specialists who work with a patient’s other doctors to provide an extra layer of support. Palliative care is appropriate at any age and at any stage in a serious illness, and can be provided together with curative treatment.”
●A randomized trial that included almost 170 patients with advanced cancer evaluated the impact of language on patient perceptions (gauged using a 0 to 10 Likert scale) of palliative care and reported that, compared with use of the term “palliative care”, the term “supportive care” was significantly associated with better understanding (7.7 versus 6.8), more favorable impression (8.4 versus 7.3), and higher future perceived need (8.6 versus 7.7) [143]. In contrast, there was no difference in perception when services were described as “patient-centered” or “traditional” care.
SOCIETY GUIDELINE LINKS — Links to society and government-sponsored guidelines from selected countries and regions around the world are provided separately. (See "Society guideline links: Palliative care".)
INFORMATION FOR PATIENTS — A helpful resource for patients, families, and clinicians seeking information about palliative care services, as well as a directory of palliative care specialists in the United States, is available through the website www.getpalliativecare.org, sponsored by the Center to Advance Palliative Care.
UpToDate offers two types of patient education materials, “The Basics” and “Beyond the Basics.” The Basics patient education pieces are written in plain language, at the 5th to 6th grade reading level, and they answer the four or five key questions a patient might have about a given condition. These articles are best for patients who want a general overview and who prefer short, easy-to-read materials. Beyond the Basics patient education pieces are longer, more sophisticated, and more detailed. These articles are written at the 10th to 12th grade reading level and are best for patients who want in-depth information and are comfortable with some medical jargon.
Here are the patient education articles that are relevant to this topic. We encourage you to print or e-mail these topics to your patients. (You can also locate patient education articles on a variety of subjects by searching on “patient info” and the keyword(s) of interest.)
●Basics topics (see "Patient education: Medical care during advanced illness (The Basics)" and "Patient education: Advance directives (The Basics)")
SUMMARY
●Palliative care is an interdisciplinary specialty that is focused on preventing and relieving suffering of all kinds, and supporting the best possible quality of life for patients facing serious illness and their families. Clinicians who are specialty trained in palliative care provide in-depth pain and symptom management, skilled communication regarding goals of care, and coordinated care across settings and over time. (See 'Introduction' above.)
●Palliative care aims to relieve suffering in all stages of disease and should be provided at the same time as all other beneficial, potentially curative, or life-prolonging treatments (figure 1). When initiated early in the disease course, palliative care has been shown to improve patient and family experience and quality of care, and randomized controlled trials in cancer and advanced lung disease also suggest that survival may be prolonged when palliative care is delivered concurrent with disease treatment. (See 'Rationale for palliative care' above.)
In contrast to palliative care, hospice is a health care delivery system under which support and services are provided to a patient with a terminal illness where the focus is on comfort rather than “curative,” life prolonging, or disease-focused treatment [19]. Thus, hospice can be considered a program that delivers palliative care to patients at the end of life, while palliative care can be appropriately offered to patients at any time along the trajectory of any type of serious illness. (See 'Definitions' above.)
●A primary role of palliative care is the relief of pain and other emotional and physical symptoms, support for family caregivers, and attention to the social determinants of health and disease. Other key services are establishing goals of care, matching care plans to those goals, psychosocial, spiritual, and bereavement support, and coordination of care over time and across settings. (See 'Rationale for palliative care' above.)
●Palliative care services can be provided in the hospital, nursing home, ambulatory setting, or at home. Hospital-based palliative care programs may entail a dedicated unit and/or an interdisciplinary consultation service; the palliative care consultation service is the most common model. Hospice care can be provided in homes, hospitals, nursing homes, and freestanding hospice inpatient facilities. (See 'Models of palliative care delivery' above.)
●A 2011 consensus statement proposed criteria for identifying patients in need of palliative care assessment in the hospital setting (table 3). While explicit criteria have not been developed for the community setting, referral for palliative care evaluation is appropriate for patients with one or more serious illnesses, functional or cognitive impairment, and a history of hospitalization or skilled nursing facility utilization in the prior 12 months. Other criteria for palliative care needs include poorly controlled symptoms, family caregiver burden, frequent visits to the emergency room, a prolonged hospitalization, a prolonged intensive care unit stay, or an estimated prognosis of one year or less. (See 'Identifying patients appropriate for a palliative care assessment' above.)
27 : The comprehensive care team: a controlled trial of outpatient palliative medicine consultation.
33 : Emergency Department-Initiated Palliative Care in Advanced Cancer: A Randomized Clinical Trial.
120 : Referral criteria for outpatient specialty palliative cancer care: an international consensus.
