In this chapter, we discuss the types of palliative care services that are available in the United States and Canada. Palliative care services are most often provided in one of two settings: the hospital and the patient’s home. Hospital-based palliative care programs include palliative care consult teams, palliative care units, and ambulatory palliative care services. Non–hospital-based programs include hospice care, home care, and bridge programs. A major criticism of hospice programs and some bridge programs is that enrollment is restricted to those individuals with a terminal prognosis. Provision of palliative care services should be based on need, not on prognosis. Conflating palliative care with end-of-life care can lead to late referrals to palliative care services.
Although primary palliative care can be provided by all health care professionals and is part of the basic competency of individual practitioners, secondary and tertiary palliative care encompasses a set of specialist services that exceed the skills of primary care providers and are therefore provided by providers with specialty training in palliative care. Palliative care providers should have skills and training in complex medical evaluation, pain and symptom management, professional-to-patient communication, addressing difficult decisions regarding goals of care, sophisticated discharge planning, and providing bereavement support while adhering as closely as possible to clinical practice guidelines such as those put forth by the National Consensus Project for Quality Palliative Care. Certification for hospice and palliative care nursing is granted by the National Board for Certification of Hospice and Palliative Nurses (NBCHPN), and certification of physicians is granted by the American Board of Medical Specialties (ABMS).
Palliative care can be provided to patients with advanced serious illness by a variety of services in numerous settings. This chapter discusses the types of palliative care services that are available. The types and availability of palliative care services are discussed within the context of Medicare, the major payment system for palliative care in the United States. We then end with an overview of training core skills necessary to provide palliative care, as well as training requirements for obtaining certification in hospice and palliative care.
Levels of Palliative Care Delivery
As with general medical care, palliative care can be delivered at three levels: primary, secondary, and tertiary. Primary palliative care can be provided by all health care professionals in any setting where patients receive care and should be part of the basic competency of individual practitioners. Moreover, primary palliative care is an expected part of primary care service models, and primary care physicians can acquire the knowledge, attitudes, and skills needed to provide palliative care to their patients. Local and national policy initiatives can ensure that providers demonstrate palliative care competencies. For example, an initiative of the Joint Commission (formerly the Joint Commission on Accreditation of Healthcare Organizations) on pain aims to ensure that pain control is part of the primary care of all patients in its accredited institutions. Accreditation of health care institutions in Canada by the Canadian Council on Health Services Accreditation now includes a specific section on palliative and end-of-life care.
Secondary palliative care is a set of specialist services that exceeds the skills of primary care providers. These services are provided through specialized consultation teams. Although the recommendations made by palliative care consultation services may overlap with care that every physician should be able to provide, providers with special interest and training in palliative care possess attitudes, knowledge, and skills not yet acquired by most physicians. Palliative care specialists are equipped to handle the very time-consuming and complex interventions required by some patients with serious illness. Examples of secondary palliative care are hospices, palliative care teams and specialists, home palliative care services, and palliative care units. Pain specialists are not considered secondary palliative care providers because their practice patterns and target populations are generally different from those of palliative care specialists. Standards for specialist palliative care training have been developed and are discussed later in this chapter.
Tertiary palliative care exceeds the ability of secondary palliative care and is provided by referral centers with expertise in difficult problems. Providers of tertiary palliative care are responsible for educating and conducting research in palliative care.
Hospital-Based Programs
Hospital-based palliative care teams have evolved from the modern palliative care movement as a result of national initiatives in the United States and Canada that called for improved pain and symptom management and for psychosocial, social, and spiritual support for patients and families living with serious illness. These programs aim to improve hospital care for patients living with serious illness, care that is often characterized by untreated physical symptoms, poor communication between providers and patients, and treatment decisions in conflict with prior stated preferences. Patients with serious illness spend at least some time in a hospital during the course of their illness. These patients need expert symptom management, communication and decision-making support, and care coordination. Consequently, the number of hospital-based palliative care programs has grown rapidly in recent years. Various secondary and tertiary palliative care models have developed in hospital settings, including palliative care consultation teams, palliative care units, and ambulatory palliative care services.
Palliative Care Consultation Team
The palliative care consultation team is the predominant hospital-based, specialist-level palliative care delivery model. The goal of such a service is to assess the physical, psychological, social, spiritual, and cultural needs of patients with advanced, serious illness. The consultation team then advises the consulting provider on how to address these needs, thus providing support and supplementing the care of other physicians for their most complex and seriously ill patients, as well as providing direct care collaboratively with the referring care team. Effective palliative care teams understand that the referring team is also a client and that, although the work of the palliative care consultation team directly benefits the patient, the team should demonstrate a benefit to these clinicians. The team roles include educating clinicians about the components of care and the benefits of palliative care, generating visibility and awareness of the program and the need for better quality end-of-life care, and building clinical partnerships and support for its services. Evidence exists that palliative care consult services improve outcomes.
The design of a successful palliative care program should fully reflect the unique mission, needs, and constraints of the hospital it serves, as well as nationally accepted standards. It also adjusts to accommodate shifts in hospital priorities and patients’ needs. Ideally, palliative care consultation services should consist of an interdisciplinary team that includes a physician, an advanced nurse practitioner, and a social worker. Other team members may include chaplains, volunteers, rehabilitation professionals, psychologists, and psychiatrists. Many programs have adopted a solo practitioner model that consists of a physician or an advanced nurse practitioner. The choice between starting a program with a solo practitioner or a full team often depends on the availability of trained palliative care staff. However, as more trained staff becomes available, the model can transition from a solo practice to a full team model.
Everyone on the team is responsible for assessing and following patients referred by an attending physician and contributing to the care plan. The team then provides advice to the referring team based on the assessment, care plan, and follow-up. On occasion, the team may assume all or part of the care of the patient, including writing the patient’s orders. Other functions of the consultation team are to participate in conferences about patient and family needs, to refer the patient to needed services, to discharge the patient to appropriate care settings, and to communicate the plan of care with all the patient’s providers.
Palliative care consultations are ordered by the most responsible physician. In some institutions, nurses, social workers, and even family members may initiate a consultation request if approved by the responsible physician. Once the consultation is ordered, the first task of the palliative care consultation team is to elicit the specific reasons for consultation from the primary service. Reasons for palliative care consultation include relief of pain and other symptoms, assistance with communication about goals of care and support for complex medical decision-making, provision of psychosocial and bereavement support, and assistance with care coordination and continuity.
The approach to the patient and the family begins with a comprehensive assessment of any physical and psychological symptoms and other social, spiritual, and cultural aspects of care, using validated assessment instruments whenever possible. Any active symptoms should be treated first because a discussion of realistic goals and overall goals of care cannot be held until the patient is comfortable enough to do so. The team can then elicit from the patient and the family their understanding of the disease and its treatment and the patient’s opinion about what constitutes an acceptable quality of life. The consultation team can coordinate a family meeting to discuss goals of care and to address advance care planning. The formulation of an appropriate plan of care and a discharge plan should take into account the family’s support system and financial resources and should be consistent with the established goals of care. Throughout this process, the consultation team maintains a close working relationship with the referring team. The consultation team should encourage participation from the referring service at family meetings; should encourage participation from nursing and support staff in the formulation of the patient’s care plan; and should educate the medical, nursing, and support staff in particular aspects of the patient’s management and care plan. The team should also provide staff with support regarding difficult patient situations and treatment decisions.
This consultation process is time consuming. Because an initial evaluation can take more than 2 hours, the process often requires several visits over several days. Most of this time is spent communicating information and providing counseling.
Palliative Care Unit
Palliative care consultation services advise the primary providers on how best to provide palliative care to patients with serious illness. In contrast, palliative care units become the primary providers for these patients. Palliative care units provide expert clinical management to patients who have severe symptoms that have been difficult to control, to patients who are imminently dying, and to patients with advanced serious illness that cannot be managed in any other setting. When staff members in other settings are untrained, uncertain, uncomfortable, or unable to formulate and implement a suitable palliative care plan for a patient with serious illness, it is appropriate to admit this patient to a dedicated palliative care unit where expert and trained staff and consistent-quality care plans can be ensured. The palliative care unit can also be a place where interdisciplinary training in palliative care practice can take place and a venue for conducting research projects that require careful monitoring of patients with serious illness.
Palliative care units often have a physical environment that is much different from that of other parts of the hospital. The staff is more experienced in providing palliative care and is more attentive to palliative care issues compared with the rest of the hospital staff. Patients and families can find a more cheerful, comfortable, and “homelike” environment that affords privacy, peace, and quiet. Ideally, palliative care units provide a room for family meetings and educational resources, such as computer access and printed literature. Finally, dedicated palliative care units allow for expanded or unrestricted visiting hours so family, children, and even pets can spend quality time with their loved ones.
Palliative care units have been organized in a variety of ways to meet the particular needs of distinct hospitals and surrounding communities. These units have consisted of scattered hospital beds, dedicated palliative care beds on another inpatient unit, and dedicated inpatient palliative care units. Table 45-1 describes various palliative care unit models available.
| Unit Model | Model Characteristics |
|---|---|
| Acute palliative care beds or units | Operated under hospital license |
| Rules that govern the operation of the unit are the same as the rules that apply to other in-hospital units | |
| Available in both academic and community hospitals | |
| Third-party payer covers if patient meets criteria for being in an acute care hospital | |
| Subacute units | Provide postacute care where the focus is on providing treatment for problems identified during acute hospitalization |
| Focus on short-term rehabilitation and discharge | |
| Beds not exclusively used for palliative care; possible conflicts in overall goals of care under the reimbursement rules or the unit’s philosophy | |
| Hospice units | Beds may be scattered in the institution, located in a dedicated unit, or located within a limited area of the hospital, such as an oncology unit |
| May operate under the hospital’s or hospice’s license | |
| If patient has opted for Medicare Hospice Benefit, then hospice is responsible for overall plan of care and is reimbursed under Medicare hospice inpatient fee schedule; in turn, hospice reimburses the hospital under negotiated contract | |
| Usually for short-term care |
Ambulatory Palliative Care
Ambulatory services are an important aspect of the continuum of palliative care. Ambulatory palliative care programs are available on a consultation basis to ambulatory patient with serious, complex, or life-threatening illness. These practices can offer a range of services from ongoing symptom management to follow-up for patients discharged from inpatient services. They can also address the various needs of patients and families through a multilevel, interdisciplinary practice. In general, patients seen in such clinics are seen earlier in the course of their illness, and they may be receiving palliative care in conjunction with active, disease-modifying therapy.
Ambulatory palliative care may be provided as a stand-alone service, or it may be incorporated into another clinic such as oncology, infectious disease, geriatrics, or general internal medicine. Programs are staffed by physicians and nurses with specialized skills in palliative care. Therefore, this model allows for assessment and management of symptom control problems; provision of psychosocial support, information, counseling, and bereavement services; continuity of care and contact with the medical system; triage of patients to other specialty services offered by the institution or community; and 24-hour access to care providers on call via telephone. When appropriate, patients seen by the ambulatory palliative care practice can be admitted directly to an inpatient palliative care unit if hospitalization is required to manage intractable symptoms or complex medical situations.
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