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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 goals of care that are 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 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.
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 (algorithm 1). However, many illness situations and personal goals do not lend themselves well to such dichotomous service models . For example, heart failure is characterized by stable disease punctuated by acute exacerbations often requiring hospitalization (figure 1). During these exacerbations, life-prolonging treatments 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 (algorithm 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, and New Zealand. Many European countries are also in the process of developing certification for palliative care . 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 . However, in order for the large number of patients with advanced and serious illness to benefit from palliative care it is important that palliative care be provided not only by specialists but also incorporated into the practices of all clinicians caring for persons with serious and complex illness.
Programs are being developed to integrate palliative medicine education, evidence based assessments, and treatment algorithms into the care of patients in the emergency room, intensive care unit, as well as oncology services  and other specialties that care for seriously ill patients . Efforts to strengthen the palliative care knowledge and skills of all clinicians caring for the seriously ill (so-called “generalist” or “primary” palliative care) through training  and use of checklists and other workflow supports  are needed. These system-based interventions can help those caring for patients to identify unmet palliative care needs and assist in determining when a consult to a palliative medicine specialist may be beneficial.
This topic will review the definition and benefits of 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, the philosophy and nature of hospice care, and pediatric palliative care are discussed elsewhere.
●(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. Until recently, palliative care was seen as care provided for people who were not receiving active treatment for cancer, and were in fact dying of their disease. It is now recognized that the principles of palliative care are applicable earlier in the course of any serious illness and that palliative care can and should be provided alongside disease modifying 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” .
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” .
●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” .
●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” .
Hospice, as defined by the Medicare hospice benefit, 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 . 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, even concurrent with restorative, life-prolonging therapies . Hospice is a model of palliative care that is offered to patients at the end of life when curative or life-prolonging therapy is no longer indicated. While all care that is delivered by hospices can be considered palliative care, not all palliative care is delivered in hospices.
RATIONALE FOR PALLIATIVE CARE — 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 . 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 US tertiary care centers [15,16].
Palliative care strives to assist patients in achieving the following goals, important to the seriously ill patient [17,18]:
●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
●Understand the pros and cons of available treatment alternatives weighed in context of the patient’s goals and values
●Name decision makers in case of loss of decisional capacity
●Have financial affairs in order
Multiple studies have shown that, across a range of serious illnesses (cancer, dementia, end-stage renal disease, cardiopulmonary failure), palliative care services improve patients’ symptoms and the quality of end of life care, allow patients to avoid hospitalization and to remain safely and adequately cared for at home, lead to better patient and family satisfaction, and significantly reduce prolonged grief and posttraumatic stress disorder among bereaved family members [19-25]. Palliative care also lowers costs and reduces rates of unnecessary hospitalizations, diagnostic and treatment interventions, and nonbeneficial intensive and emergency department care [26-32]. Among patients hospitalized in intensive care units (ICUs), benefits of early proactive palliative care involvement include more and earlier ICU family meetings and shorter length of stay . (See "Palliative care: Issues in the intensive care unit in adults", section on 'Palliative care services in the ICU'.)
However, perhaps more importantly, when initiated early in the disease course, palliative care also improves clinical and quality of care outcomes, and possibly prolongs survival [27,34-39]. In a 2012 systematic review of the evidence regarding the impact of palliative care interventions on outcomes for patients with advanced and serious illness, evidence of benefit was strongest for interventions that targeted pain, and for decision making related to appropriate health care utilization .
The following randomized trials are illustrative:
●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), less depressive symptoms, and longer median survival than did those who were assigned to oncologic care alone . The ambulatory palliative care assessment in this trial focused on symptom management, patient and family coping, and illness understanding and education (table 1) . In a later analysis, patients receiving 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 and more likely to enroll in hospice for a longer duration . (See "Overview of the treatment of advanced non-small cell lung cancer", section on 'Palliative care'.)
A survival benefit for early initiation of palliative care was also shown in the ENABLE III trial which randomized patients with a variety of advanced cancers to early versus delayed (three months later) initiation of concurrent palliative care . Although patient-reported outcomes were not significantly different, early palliative care intervention was also associated with lower depression scores and less depression and stress burden in the caregivers .
●The ENABLE II trial demonstrated higher scores for QOL and mood in patients with any life-limiting cancer (prognosis of approximately one year) who received psychoeducational palliative intervention in addition to standard care .
●A randomized trial demonstrated that comprehensive outpatient palliative care in patients who continue to pursue disease modifying treatment, compared to usual care, improves symptom management and patient satisfaction [35,36].
●Patients with late-stage chronic obstructive pulmonary disease and heart failure who were randomly assigned to in-home palliative care, as compared to usual care, reported greater satisfaction with care and were more likely to die at home .
Given these benefits, there is a need to change the paradigm for management of patients with advanced life threatening diseases, including but not limited to patients with advanced cancer . Care should include an earlier and more thorough assessment of patients’ options, goals, and preferences, and be tailored throughout the continuum of their illness to include symptom management and attention to quality of life issues in addition to disease-modifying therapies . A provisional clinical opinion from the American Society of Clinical Oncology (ASCO) advised combining standard oncologic care and palliative care early in the course of illness for all patients with metastatic cancer and/or high symptom burden .
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 .
Patients with advanced diseases such as dementia may be 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 to cognitively intact patients both pre- and postoperatively . 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 [22,23]. 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 .
Principles of pain management for adults with cancer, end-stage renal 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 "Pain assessment and management in the last weeks of life" and "Palliative care: End-stage renal disease" and "Palliative care for patients with advanced heart failure" and "Overview of managing common non-pain symptoms in palliative care".)
Establishing goals of care — Goals of care that are clear to clinicians, patients, and families are essential to the provision of appropriate and beneficial medical care. 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 [17,49] and a concern of family members of persons who died in the hospital is not enough time talking with their doctors . 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 . (See "Palliative care: Medically futile and potentially inappropriate/inadvisable therapies", section on 'The SUPPORT study'.)
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 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 "Grief and bereavement in adults: Management".)
Psychological distress, and depression in particular, is prevalent in patients with advanced illnesses. Depression is associated with higher utilization of healthcare services as well as significantly increased mortality rates. Depression, with a prevalence rate of 15 to 60 percent in patients with a terminal illness , 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  and supporting 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 [27,34]. (See "Assessment and management of depression in palliative care".)
Another key element of palliative care is attending to the needs of family members and caregivers. Studies have shown that most caregivers of hospitalized patients sustain mild to moderate stress . Caregivers who report emotional strain are at substantially higher risk for death . Successful palliative care interventions require attention to the needs of both the patient and the constellation of family members and caregivers surrounding them .
Complicated grief in survivors has been identified as a distinct disorder that results in severe debilitation and negative health consequences. (See "Grief and bereavement in adults: Management".)
Spiritual care is a core domain of palliative care . 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 . (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 . 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 . (See "Overview of spirituality in palliative care".)
Coordination of care — Seriously ill patients and their families 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 advance directives resulting in care matched to patient-determined goals for care [60-62].
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 homeless persons".)
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 palliative care programs include ambulatory, 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 . The number of hospital-based palliative care programs has increased rapidly  and, as of 2011, programs were in place at more than 63 percent of US hospitals with more than 50 beds .
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, 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 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; 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 to usual care patients .
●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. (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 room staff on symptom management, advance care planning and psychosocial support and when and how best to access palliative medicine specialists for consultation .
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 a palliative care consultation . 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 . Self-rated satisfaction 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 , and coexistence of both models within an institution is ideal, when the institution is large enough to support the required resources . 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. 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.
Non-hospital palliative care services — Ambulatory palliative care programs 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, ambulatory palliative care providers can act as consultants for patients who are not hospitalized but who have complex or advanced illnesses, symptom distress, and difficulty managing complex treatment regimens. Ambulatory palliative care teams provide pain and symptom management, psychosocial support, and coordination of home care needs. Often, patients receive ambulatory palliative care in conjunction with life prolonging therapy. (See "Palliative care delivery in the home".)
When initiated early in the disease course, ambulatory palliative care improves clinical and quality of care outcomes, including better survival [34-36]. Because of the known benefits of early palliative care interventions, palliative care services and models of co-management are being developed within outpatient practices such as oncology care. Similar to the hospital based integrated models of palliative care discussed above, models are being developed 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 . 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).
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 hospice model requires interdisciplinary team care. Hospice care can be provided in homes, hospitals, 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 to other hospice populations .
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) . 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 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 psychosocial, spiritual, and social issues.
While criteria for palliative care assessments are not available for patients in the outpatient setting, consultation to a palliative care specialist team could be considered for patients who have poorly controlled symptoms, frequent visits to the emergency room, one or more hospital admissions in 30 days, a prolonged hospitalization, and/or a prolonged ICU stay, or issues related to goals of care or end of life planning. An affirmative answer by the primary care 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.
The National Comprehensive Cancer Network released guidelines on Palliative Care for patients with cancer in 2014, in which they provided criteria for appropriate patients for palliative care screening . These include patients with:
●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 life-threatening or potentially terminal condition.
PERCEPTIONS OF PALLIATIVE CARE — 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 . 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 . 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. In contrast, only 5 to 7 percent of health care providers felt similarly. A 2010 review of guidelines and policies from the US, UK, Canada, and Australia confirmed the paucity of uniform understandings of patient expectations and clinical standards for palliative care . 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 . 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” . Among the major results were that:
●Over-arching, rather than specifically identified 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 . 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 treatment.
Barriers to referral — Barriers to referral for palliative care are present in both patients (and their families) as well as providers [77,78]. These are illustrated in the following studies:
●One public opinion poll conducted in 2011 by the Center to Advance Palliative Care (CAPC) and the American Cancer Society (ACS) reported that while 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, two main barriers were identified :
•The awareness of palliative care services among patients and their families
•The tendency of clinicians to equate palliative care with end of life care
●A separate poll, completed by US physicians, acknowledged concerns about incorporating palliative care, including :
•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 reimbursement (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 based on 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.
●One 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 . 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. However, the presence of these needs was not associated with the likelihood that patients would initiate a request for 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 have an impact on these issues:
●In the CAPC/ACS poll discussed above, two definitions of palliative care appeared to have a positive impact on how it was perceived :
•“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 (gaged using a 0 to 10 Likert scale) of palliative care and reported that, compared to 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) . In contrast, there was no difference in perception when services were described as “patient-centered” or “traditional” 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 organization Get 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.)
●Palliative care is an interdisciplinary specialty that is focused on preventing and relieving suffering, and supporting the best possible quality of life for patients and their families facing serious illness. Clinicians who are specialty trained in palliative care provide in depth pain and symptom management, 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 can be provided at the same time as curative or life-prolonging treatments (algorithm 1). When initiated early in the disease course, palliative care has been shown to improve clinical, quality of care, and survival outcomes. 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 curing an illness . 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. Other key services are establishing goals of care, psychosocial, spiritual, and bereavement support, and coordination of care. (See 'Rationale for palliative care' above.)
●Palliative care services can be provided in the hospital, 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 ambulatory setting, referral for palliative care evaluation is appropriate for patients with poorly controlled symptoms, frequent visits to the emergency room, one or more hospital admissions in 30 days, a prolonged hospitalization, a prolonged ICU stay, or with a prognosis of one year or less. The surprise question: “Would you not be surprised if the patient died within 12 months, or did not live to adulthood?” can serve as a guide. (See 'Identifying patients appropriate for a palliative care assessment' above.)
ACKNOWLEDGMENT — We are saddened by the death of J Andrew Billings, MD, who passed away in September 2015. UpToDate wishes to acknowledge Dr. Billings' many contributions to palliative care, in particular, his work as our Editor-in-Chief and Section Editor for Non Pain Symptoms: Assessment and Management.
- Lynn J. Living long in fragile health: the new demographics shape end of life care. Hastings Cent Rep 2005; Spec No:S14.
- Centeno C, Noguera A, Lynch T, Clark D. Official certification of doctors working in palliative medicine in Europe: data from an EAPC study in 52 European countries. Palliat Med 2007; 21:683.
- Morrison RS, Meier DE. Clinical practice. Palliative care. N Engl J Med 2004; 350:2582.
- Partridge AH, Seah DS, King T, et al. Developing a service model that integrates palliative care throughout cancer care: the time is now. J Clin Oncol 2014; 32:3330.
- Weissman DE, Meier DE. Identifying patients in need of a palliative care assessment in the hospital setting: a consensus report from the Center to Advance Palliative Care. J Palliat Med 2011; 14:17.
- Quill TE, Abernethy AP. Generalist plus specialist palliative care--creating a more sustainable model. N Engl J Med 2013; 368:1173.
- Bernacki RE, Block SD, American College of Physicians High Value Care Task Force. Communication about serious illness care goals: a review and synthesis of best practices. JAMA Intern Med 2014; 174:1994.
- Sepúlveda C, Marlin A, Yoshida T, Ullrich A. Palliative Care: the World Health Organization's global perspective. J Pain Symptom Manage 2002; 24:91.
- World Health Organization (WHO) definition of palliative care, available online at http://www.who.int/cancer/palliative/definition/en (Accessed on January 07, 2011).
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