INTRODUCTION — Palliative care focuses on improving quality of life for patients with serious illness and their families. This approach may include providing relief from pain and/or other distressing symptoms, integrating psychological and spiritual aspects of care, assisting with difficult decision-making, and supporting patients and families. Palliative care can be provided alongside therapies intended to treat the underlying disease or prolong life (for example, chemotherapy), and it is appropriate at any age or stage of serious illness [1]. A percentage of patients receiving palliative care may transition to hospice care, in which case the focus of their care plan is exclusively on palliation. (See "Benefits, services, and models of subspecialty palliative care" and "Hospice: Philosophy of care and appropriate utilization in the United States".)
DEFINITION OF PRIMARY VERSUS SUBSPECIALTY PALLIATIVE CARE — Palliative care may be delivered by palliative care specialists who work alongside a patient’s primary clinicians. For example, a patient with advanced cancer may see a palliative care specialist in addition to their oncologist. This type of palliative care is called “subspecialty palliative care.” 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. The 2019 European Association for Palliative Care (EAPC) Atlas of Palliative Care in Europe states that 29 nations have a process of specialization in palliative medicine for clinicians [2]. Subspecialty palliative care services are most available in high-income countries, as exemplified by the United States. The availability of subspecialty palliative care services in low-income countries is generally quite limited [3].
Palliative care may also be provided by clinicians who are not palliative care specialists. For example, internists, family medicine doctors, cardiologists, oncologists, and many other clinicians who care for seriously ill patients may provide basic palliative care. Palliative care provided by clinicians who are not palliative care specialists is sometimes called “primary” or “basic” palliative care [4,5].
A limitation of many definitions of palliative care is the failure to distinguish primary from subspecialty palliative care. Some aspects of palliative care (eg, basic symptom management, routine discussions about code status and goals of care, and/or managing the transition to hospice care) should be within the skill set of all clinicians who care for seriously ill patients. However, other aspects of palliative care (eg, complex symptom management and difficult discussions about code status, care goals, or transitions to hospice that involve conflict) may require the involvement of a palliative care subspecialist (table 1). Failure to distinguish primary palliative care from subspecialty palliative care may lead to confusion if, for example, the recommendation that all patients with a limited life expectancy receive palliative care is misinterpreted to mean that all patients with a limited life expectancy should be referred to a palliative care subspecialist.
This topic review will focus on the rationale for and domains of primary palliative care. Benefits, services, and models of subspecialty palliative care, both within and outside of the United States, are covered in detail elsewhere. (See "Benefits, services, and models of subspecialty palliative care" and "Palliative care and hospice outside of the United States".)
RATIONALE FOR PRIMARY PALLIATIVE CARE — Primary palliative care is important for several reasons:
●Primary palliative care promotes stronger primary clinician-patient relationships and reduces fragmentation of care [4]. Alleviating pain and suffering, providing empathic care, and helping patients make informed decisions that reflect their values are integral parts of what it means to be a doctor, as reflected in the professional oaths taken by medical students in a tradition that dates back to Hippocrates [6]. All clinicians who care for seriously ill patients should understand the domains of primary palliative care, receive basic training in palliative care competencies, and be encouraged to use these skills to provide high-quality disease management and symptom palliation to all seriously ill patients. Involving an additional specialty team in the care of every patient with a limited life expectancy is neither efficient nor desirable and may unintentionally undermine existing therapeutic relationships and/or de-skill primary clinicians [4,7].
●Globally, most patients with serious illness lack timely access to palliative care subspecialists [3]. While palliative care services are expanding around the world, access to palliative care subspecialists remains variable. For example, even in the United States, subspecialty palliative care teams are more common in large hospitals than in small hospitals, in public and nonprofit hospitals than in for-profit hospitals, in cities than in rural areas, and in New England compared with other regions of the country. In the national survey from 2019, 48 percent of hospitals in the central southwest United States (including New Mexico, Alabama, Mississippi, Arkansas, Oklahoma, Alaska, and Wyoming) had a palliative care program compared with 92 percent of hospitals in New England [8].
Subspecialty palliative care teams in the United States were initially established as inpatient consult services [9]. Palliative care subspecialists remain more common in hospitals than in outpatient or community settings, though there has been growth in availability of outpatient palliative care over the past decade. In 2009, 59 percent of National Care Institute (NCI)-designated cancer centers and only 22 percent of non-NCI-designated cancer centers had outpatient subspecialty palliative care services [10]. In 2018, 95 percent of NCI-designated cancer centers and 40 percent of non-NCI-designated cancer center had outpatient subspecialty palliative care [11]. In a statewide survey of California hospitals, 8 percent had outpatient subspecialty palliative care services in 2007, and this number was essentially unchanged in 2011 (7 percent) [12]. A 2018 survey estimated capacity and sufficiency of palliative care clinics in the 10 most populous counties in California in 2017. They found that the capacity of these clinics was sufficient to meet only 10 percent of estimated palliative care need in these counties. This survey also noted that in 2017 there were a total of 380 clinic, home-based, and cross-setting community-based palliative care programs in California, caring for approximately 76,700 people per year (an increased capacity of 43 percent compared with 2014) [13].
Patients are frequently referred to subspecialty palliative care late in their disease course. To some degree, this may reflect the relative absence of palliative care consultative services in community-based settings, where many patients are initially treated, and the greater relative presence at academic medical centers, where patients with more-advanced disease may predominate [14]. However, it also may reflect a continuing reluctance to involve palliative care early on in the course of a patient’s illness, where, over time, it may have the greatest benefit [14]. (See "Benefits, services, and models of subspecialty palliative care", section on 'Rationale for palliative care'.)
●Workforce shortages are a major problem for subspecialty palliative care, limiting the expansion of palliative care services [15]. A workforce task force convened by the American Academy of Hospice and Palliative Medicine concluded that the estimated gap between the available supply of trained subspecialty palliative care specialists and the hypothetical current need was between 6000 and 18,000 clinicians to meet palliative care needs in the inpatient setting alone [16]. Two United States models of the need for and supply of palliative care subspecialists estimate that current training capacity is insufficient to keep up with population growth and demand for palliative care services [17,18]. As an example, in the United States, board-certified medical oncologists outnumber board-certified hospice and palliative medicine clinicians by more than three to one, and board-certified internists outnumber board-certified palliative medicine clinicians by more than 40 to 1 [19].
The shortage of palliative care subspecialists is particularly a problem in oncology, given that a 2017 Clinical Practice Guideline from the American Society of Clinical Oncology strongly recommends that all patients with advanced cancer receive palliative care early in the disease course, concurrent with active treatment [20]. They also recommend that palliative care be delivered by interdisciplinary subspecialty palliative care teams, which is founded on an increasingly strong evidence base supporting the benefits of early integration of such services, and the absence of research to indicate whether similar outcomes can be achieved through similar models, such as primary or basic palliative care, delivered in oncology clinics [21,22]. Unfortunately, interdisciplinary palliative care teams are even rarer than subspecialty palliative care clinicians. (See "Benefits, services, and models of subspecialty palliative care", section on 'Rationale for palliative care'.)
●A focus on primary palliative care aligns with the “triple aim” of health care reform, with the potential for improved population health (through increased access to core palliative care services), improved patient experiences, and better alignment of resources with patient goals [23].
●Even when palliative care subspecialists are available, many primary clinicians are reluctant to refer patients. Reasons for infrequent referrals to subspecialty palliative care include the misperception that palliative care is the same as hospice, uncertainty about disease trajectories that make it difficult to know when subspecialist involvement is appropriate, patient preferences to avoid additional clinician visits, and organizational barriers that limit coordination between referring clinicians and the palliative care team [24-26]. In addition, many clinicians who care for seriously ill patients view essential palliative care tasks as part of their clinical role (though some may not recognize what they do not know because they have not been adequately trained) [27,28]. Referring a patient to a palliative care subspecialist may be viewed as shirking this responsibility, abandoning the patient, or failure.
PRIMARY PALLIATIVE CARE DOMAINS AND COMPETENCIES
Overview — Guidelines available from the National Consensus Project for Quality Palliative Care outline key domains and best practices for subspecialty palliative care teams [29]. Efforts have also been made to define primary palliative care skills and elaborate criteria for subspecialty palliative care referral [4,5,30,31]. Primary palliative care skills fall under four major domains; brief descriptions of each are provided in the sections below.
The table shows more extensive examples in each of these domains that might be within the skill sets of non-palliative care clinicians as opposed to palliative care subspecialists (table 1).
Many of the dilemmas faced by subspecialists do not have a simple or straightforward answer, but the expertise of specialty-trained clinicians and interprofessional teams is clearly indicated in such cases.
Curricula are being developed to ensure that primary care clinicians and other non-palliative care specialists are trained to provide basic palliative care. (See 'Utilizing palliative care subspecialists to improve primary palliative care' below.)
Assessing and treating physical symptoms — The prevalence of physical symptoms in serious illness is high. For example, data from representative studies indicate that the prevalence of pain among patients with advanced cancer is over 80 percent and the prevalence of breathlessness among patients with advanced heart failure is nearly 90 percent [32]. Symptom assessment is necessary not only to provide clues to a diagnosis or disease state (eg, breathlessness may indicate a heart failure exacerbation) but also to understand the burden of serious illness for patients (eg, breathlessness may mean that a patient is unable to spend time with their grandchildren). Furthermore, burdensome symptoms may be far more common than expected (eg, heart failure patients may have moderate to severe symptoms other than dyspnea that may go undetected if not specifically inquired about). Identification and treatment of the full range of physical symptoms can help to alleviate the illness burden for patients and families and improve quality of life. Routine assessment and treatment of pain and other physical symptoms must not wait for a subspecialty consult. Rather, assessing and treating physical symptoms should be within the skill set of all clinicians who care for sick patients, and subspecialists should be involved only when symptoms prove to be complex, refractory, or difficult for the primary team to manage. (See "Approach to symptom assessment in palliative care".)
Psychological, social, cultural, and spiritual aspects of care — Attention to the psychological, social, cultural, and spiritual needs of patients and families is an integral part of good medical care. Symptoms of depression and anxiety, social and financial stressors, and caregiver burden are common in serious illness [32,33]. Culture profoundly shapes how patients and families approach serious illness, death, and dying, and spiritual needs are often heightened near the end of life [34,35]. (See "Overview of anxiety in palliative care" and "Assessment and management of depression in palliative care" and "Overview of spirituality in palliative care" and "Cultural aspects of palliative care".)
All clinicians who care for patients with serious illness need basic skills in recognizing and treating uncomplicated depression and anxiety, recommending appropriate social supports, and eliciting and respecting cultural traditions and spiritual preferences. Clinicians should also know when and how to refer to subspecialists when patient or family needs are not adequately met in the primary care setting.
Serious illness communication skills — Basic serious illness communication skills include communicating bad news, eliciting patient preferences, establishing goals of care, identifying a surrogate decision-maker, deciding about future cardiopulmonary resuscitation (CPR) and mechanical ventilation, and providing emotional support. These skills are required routinely in the care of seriously ill patients and should therefore be familiar to all clinicians who provide this care [36]. Palliative care subspecialists may be consulted for more complex cases, for example, when patients or families are experiencing significant emotional distress, when there is disagreement or conflict about the goals of care, or when a patient is requesting palliative sedation or physician-assisted death [4]. (See "Discussing serious news" and "Communication of prognosis in palliative care" and "Discussing goals of care" and "Advance care planning and advance directives" and "Palliative care: Medically futile and potentially inappropriate therapies of questionable benefit" and "Physician-assisted dying".)
Care coordination — Basic care coordination in serious illness means ensuring that transfers between health care settings are timely and reflect patient/family needs and goals. Primary teams must also have basic knowledge about how to refer patients for hospice care. Given that approximately one-half of all deaths in the United States occur within a hospice program [37], requiring the involvement of a palliative care subspecialist to facilitate this transition is not feasible. Furthermore, the primary clinician’s commitment to patients with serious illness from diagnosis through death may improve continuity of care and reassure patients that they are not being abandoned [38]. (See "Hospice: Philosophy of care and appropriate utilization in the United States", section on 'Eligibility'.)
UTILIZING PALLIATIVE CARE SUBSPECIALISTS TO IMPROVE PRIMARY PALLIATIVE CARE — Given the marked shortage of trained subspecialty palliative care professionals in proportion to the potential need for inpatient, outpatient, and home palliative care services, there is a critical need to refine the utilization of subspecialty palliative care services.
Traditional approaches — Current models for subspecialty palliative care utilization generally follow one of the two below:
●Consult and provide an ongoing consultant relationship – This model gained momentum with the study of early palliative care consultation in advanced lung cancer patients alongside usual oncologic care, which showed improved symptom management, less futile end-of life-care, and improved longevity in comparison with usual oncologic care alone [39]. While this approach might be the “gold standard,” it has not been compared with more-limited models of subspecialty palliative care involvement, and it is therefore not clear that patient outcomes would be superior. It is clear that we do not have a sufficient number of palliative care subspecialists to provide this comprehensive model of care to all seriously ill patients.
●Consult and provide ongoing treatment and care – This model is the most resource-intensive, potentially involving the subspecialty palliative care consultant and the interprofessional team on an ongoing basis as part of the patient’s treatment team. This model may be appropriate for the subgroup of patients needing palliative care services for whom ongoing subspecialty palliative care is needed to help manage particularly refractory problems, such as difficult symptoms, major family conflict, or the wish to die (table 1).
Newer approaches — Potential solutions for more limited utilization of subspecialty palliative care require rethinking reimbursement for palliative care services, with more emphasis on improving and disseminating primary palliative care education and training in basic palliative care skills, while at the same time improving access to a formal subspecialty consultation for those who can benefit most. As more non-palliative care clinicians become able to provide basic palliative care for the majority of their patients, it will become more likely that adequate subspecialty palliative care services will be available to the seriously ill patients who need them.
Possible elements of an approach involving more-limited utilization of subspecialty palliative care might include:
●Primary palliative care curricula for non-palliative care specialists and primary care clinicians – Curricula are in development for core palliative care practices and could be provided as part of a standard continuing medical education (CME) course online or as part of grand rounds and other teaching formats [40-42]. Brief primary palliative care coaching sessions for residents can also integrate palliative care education into a busy clinical service [43].
●Palliative care telehealth consultation and education for rural providers – The Project ECHO (Extension for Community Healthcare Outcomes) model has been successful in delivering geriatric care education and consultation to rural providers [44]. This model has been adapted to provide palliative care education and indirect consultation, thus allowing basic palliative care services to be provided to populations that would otherwise have minimal access [45,46].
●Informal consultation by palliative care subspecialists – This would involve subspecialists offering informal input and advice to non-palliative care specialists and primary care clinicians about palliative care issues without providing a formal consult [47]. Primary clinicians could receive basic advice for relatively straightforward palliative care problems, and decisions could be made jointly about which cases would most benefit from a formal subspecialty consultation.
●Limited consultation visits – Limited consultation visits (usually limited to one to two initial visits, with potentially more visits in the future depending on outcomes) might suffice if focus is needed on a specific issue (eg, recommendations about transitioning a patient on high-dose opioids to methadone, the best adjuvant treatments for pain, or medications to treat depression in a terminally ill patient). In this model, the consulting clinician would make specific recommendations that would then be implemented by the primary treating team.
●Video consultations – In rural areas where access to primary care providers and specialists is limited, or for situations where patients are too frail to come to the office and properly trained clinicians are not able to do home visits, video consultations can also be very helpful and efficient in terms of clinician time. Home care professionals can be present to provide technical assistance and to provide additional visual and tactile information to the off-site consultant. Billing for such consultations needs to be negotiated with individual payers [48,49]. During COVID-19, use of video consultations in palliative care has expanded significantly, and many regulatory measures have been relaxed to support provision of these services [50].
How these models may be utilized will depend on local resources, reimbursement incentives, system priorities, and the availability/skill sets of local palliative care providers. Each region should keep these (and other) options in mind as they seek to achieve the goal of improving appropriately tailored palliative care services for all seriously ill patients. Fully actualizing a model of providing primary palliative care will require that palliative care subspecialists provide training to non-palliative care clinicians to upgrade competencies; this approach will necessitate new funding mechanisms for palliative care subspecialists who are responsible for training other clinicians.
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".)
SUMMARY
●Palliative care focuses on improving quality of life for patients with serious illness and their families. This approach may include providing relief from pain and/or other distressing symptoms, integrating psychological and spiritual aspects of care, assisting with difficult decision-making, and supporting patients and families. (See 'Introduction' above.)
●Palliative care may be delivered by palliative care subspecialists who work alongside a patient’s primary treating clinicians, termed “subspecialty palliative care.” Basic palliative care may also be provided by clinicians who are not palliative care subspecialists (eg, internists, family medicine doctors, cardiologists, oncologists) and who care for seriously ill patients. Palliative care provided by clinicians who are not palliative care subspecialists is sometimes called “primary palliative care.” (See 'Definition of primary versus subspecialty palliative care' above.)
●One of the major rationales for expanding the ability of non-palliative care clinicians to deliver basic palliative care is the large gap between the available supply of trained subspecialty palliative care specialists and the current need. In addition, a focus on primary palliative care aligns with the “triple aim” of health care reform, with the potential for improved population health (through increased access to core palliative care services), improved patient experiences, and better alignment of resources with patient goals. (See 'Rationale for primary palliative care' above.)
●Primary palliative care skills fall under four major domains, including (see 'Primary palliative care domains and competencies' above):
•Assessing and treating physical symptoms
•Psychological, social, cultural, and spiritual aspects of care
•Serious illness communication skills
•Care coordination
Efforts have been made to define primary palliative care skills and elaborate criteria for subspecialty palliative care referral based upon these domains (table 1).
●Given the marked shortage of palliative care subspecialists in proportion to the potential need for inpatient, outpatient, and home palliative care services, there is a critical need to refine the utilization of subspecialty palliative care services. Potential solutions for more limited utilization of subspecialty palliative care require rethinking reimbursement for palliative care services, with more emphasis on improving and disseminating primary palliative care education and training in basic palliative care skills, while at the same time improving access to a formal subspecialty consultation for those who can benefit most. (See 'Utilizing palliative care subspecialists to improve primary palliative care' above and 'Newer approaches' above.)
ACKNOWLEDGMENT — The UpToDate editorial staff acknowledges Timothy Quill, MD, who contributed to an earlier version of this topic review.
