Palliative care is a multidimensional approach to care for patients with serious illness that aims to relieve physical, psychosocial, and spiritual suffering. Palliative care can provide support for patients and families starting at the time of diagnosis and can be provided concurrently with curative treatment. Patients with oncologic diagnoses, as well as those with nononcologic diagnoses (e.g. multiple sclerosis, amyotrophic lateral sclerosis, severe trauma, vascular amputation, multiple concurrent chronic illnesses) can be eligible for palliative care services.
As the worldwide burden of chronic illness and disability rises, physicians across specialties, including physical medicine and rehabilitation (PM&R), are increasingly tasked with providing primary, or nonspecialist, palliative care in both inpatient and outpatient settings. Physiatrists provide primary palliative care by addressing physical, psychosocial, and functional needs, coordinating patient-centered care that aligns to the greatest extent possible with a patient’s goals, and incorporating the needs of both patient and caregiver into care planning. Where available, physiatrists can engage specialist palliative care consultation when skills beyond those of the nonpalliative care practitioner are required to optimize comprehensive care.
Palliative care specialists can offer expertise in areas including complex symptom management, advance care planning, communication and conflict resolution, identification and management of symptoms at end of life, and interprofessional support for clinicians bearing the emotional weight of caring for patients with serious illness. Like PM&R, palliative care embraces an interdisciplinary care model, attends to the needs of both patient and caregiver, and focuses on quality of life for patients for whom there is frequently no definitive cure for the primary disabling disease or injury.
The National Consensus Project Clinical Practice Guidelines for Quality Palliative Care, Fourth Edition (“the guidelines”), published in 2018, set forth standards for excellence in palliative care. The standards are pertinent to both the practice of physiatry and to physiatry-palliative care collaboration. The guidelines can be found at http://www.nationalcoalitionhpc.org/ncp/.
Serious illness is defined here and in the guidelines as “a health condition that carries a high risk of mortality and either negatively impacts a person’s daily function or quality of life or excessively strains their caregiver,” a definition originally articulated by Kelley and Bollens-Lund.1
GUIDELINE DEVELOPMENT METHODOLOGY
The guidelines were developed by the National Consensus Project for Quality Palliative Care, a collaboration of 16 leading national professional palliative care organizations. The group outlined ten key questions across eight domains of palliative care (structure/process of care, physical aspects of care, psychological/psychiatric aspects of care, social aspects of care, spiritual/religious/existential aspects, cultural aspects, end of life, and ethical/legal aspects) to guide a systematic review of palliative care interventions published in English between 2013 and 2018. The review was performed by the Evidence-based Practice Center at the RAND Corporation, supported by a technical panel, and included 139 systematic reviews in total across the eight domains. The National Consensus Project then developed consensus-based guidelines informed by both expert practice and the findings of the literature review.
WHAT IS NEW IN THE GUIDELINES
For the first time, the target audience for the guidelines is expanded beyond palliative care specialists to include clinicians across nonpalliative care specialties. The guidelines delineate essential primary palliative care skills and highlight strategies for the coordination of care across providers and locations, including postacute care settings. The guidelines also emphasize strategies for providing excellent palliative care to people of all ages and backgrounds. There is new attention to the impact of functional status on quality of life and reference to the role of disability in the patient experience.
While maintaining the same eight-domain structure as previous editions, the current guidelines add several sections to each domain: key research evidence, clinical and operational implications, essential palliative care skills needed by all clinicians, and practice examples across settings and populations.
RECOMMENDATIONS FOR PHYSIATRIC PRACTICE
The guidelines provide three important types of information relevant to physiatrists. These are (a) key primary palliative care skills for the nonpalliative care clinician, (b) delineation of a skillset specialty palliative care could offer, and (c) an indication of areas in which physiatrists could be valuable contributors to palliative care teams.
PRIMARY PALLIATIVE CARE SKILLS
The guidelines recommend key palliative care skills needed by all physicians. For some of these skills, physiatrists can add a palliative care lens to skills that fall within foundational PM&R knowledge: identifying and managing common physical symptoms (e.g. pain, constipation, agitation); assessing and addressing social factors related to care (e.g. caregiver capability, equipment and transportation needs); eliciting patient/family understanding of illness/disability; and providing effective communication with people with a variety of cultural experiences and backgrounds, including disability.
For other skills, supplemental continuing education could potentially enhance a physiatrist’s patient and family care. These skills include performing a basic palliative care needs assessment, identifying common sources of physical and nonphysical suffering, addressing psychological reactions to serious illness/grief/loss, understanding the role for palliative care and how to talk with families about palliative care, and understanding hospice eligibility criteria. (Hospice is a specialized model of care distinct from palliative care, for individuals whose life expectancy is assessed to be 6 months or less.)
UTILIZATION OF SPECIALTY PALLIATIVE CARE
The guidelines list some principles of excellent palliative care that may require advanced training in certain palliative care skills. In these cases, physiatrists can engage palliative care specialists for guidance. For example, palliative care specialists can provide recommendations for advanced management of severe, refractory symptoms; guidance for addressing moral distress among patients, families, and clinicians; and an additional layer of support for addressing complex family dynamics.
As patients near end of life, anticipated or unanticipated, palliative care input from a provider with training in end of life care could provide a physiatrist with guidance in areas including, but not limited to, identifying when patients are approaching death, educating families about the dying process, managing symptoms such as agitation and secretions, and helping families plan for after death and bereavement.
Another instance in which physiatrists could seek specialist palliative care input is in providing for continuity of coordinated care. For example, the guidelines outline the palliative care team role in performing regular assessments of patient/family goals and directives, including at times of change of health care setting or provider. Physiatrists could seek valuable, time-saving, detailed knowledge of patient goals and directives from a patient’s acute care palliative care provider upon transfer from acute to rehabilitation care.
ROLE FOR PHYSIATRIST AS CONTRIBUTING MEMBER OF AN INTERDISCIPLINARY PALLIATIVE CARE TEAM
New since the third edition of the guidelines, the fourth edition references function, disability, and rehabilitation. Though not explicitly stated in the guidelines, these references broaden the construct of quality palliative care to include areas that overlap with physiatry expertise. As such, whether as a formal palliative care team member, occasional consultant, or lecturer/educator, the physiatrist has meaningful skills and perspective to contribute to the provision of excellent interdisciplinary palliative care.
Several key elements from the guidelines lend themselves to PM&R involvement in interdisciplinary palliative care. For example, to address the guidelines’ attention to assessing and addressing functional needs in order to promote quality of life, physiatrists can facilitate thorough assessments of functional status and make recommendations for appropriate and safe equipment, home modifications, and rehabilitation therapies. As another example, the guidelines set forth coordination of care for patients with limited cognition or communication as a standard of palliative care excellence. Optimizing communication and using surrogates as appropriate is well within the realm of physiatry expertise, and physiatrists could easily take on a guiding or coordinating role here.
The guidelines note that a standard of palliative care includes the premise that, “patients with disabilities are assumed to have decision-making capacity unless determined otherwise, according to applicable laws.” As experienced advocates for people with disabilities, physiatrists can play an important role on palliative care teams in educating patients, families, and clinicians about disability rights laws and resources. Physiatrists can also share with palliative care teams their expertise in disability cultural competence.
The guidelines are a relevant and important tool for physiatrists caring for patients across care settings in our current health care environment. The guidelines also present opportunities for clinical and educational collaboration between PM&R and palliative care.
1. Kelley AS, Bollens-Lund E: Identifying the population with serious illness
: the “denominator” challenge. J Palliat Med