Palliative care guidelines updated with increased focus on collaboration, communication

The guidelines from the National Consensus Project for Quality Palliative Care focus on two main concepts: that palliative care is inclusive of all people with serious illness and that timely consideration of palliative care is the responsibility of all who care for the seriously ill, including primary care physicians, subspecialists, and hospitalists.

The National Consensus Project for Quality Palliative Care released the fourth edition of its clinical practice guidelines last week.

The guidelines, which were last updated in 2013, focus on two main concepts: that palliative care is inclusive of all people with serious illness, regardless of setting, diagnosis, prognosis, or age, and that timely consideration of palliative care is the responsibility of all who care for the seriously ill, including primary care physicians, subspecialists, and hospitalists. “All clinicians are encouraged to acquire core skills and knowledge regarding palliative care and refer to palliative care specialists as needed,” the guidelines stated.

Recommendations are offered in eight domains, with new key themes added for the fourth edition of the guidelines: elements of a comprehensive assessment; family caregiver assessment, support, and education; care coordination, especially during care transitions; culturally inclusive care; and communication as an essential component of care quality. Selected guidance from each domain is as follows.

Structure and processes of care. The guidelines emphasize the importance of care coordination and promote the use of an interdisciplinary team. An individualized patient and family care plan should be based on an interdisciplinary comprehensive assessment of the patient and family, the guidelines said.

Physical aspects of care. The guidelines highlight the importance of using validated tools for assessment and management of pain and other symptoms and emphasize the impact of functional status on quality of life. “Expert symptom management focuses not only on physical factors but also emotional, spiritual, religious, and cultural factors, which set the foundation of palliative care and promote comfort and quality of life,” the guidelines said.

Psychological and psychiatric aspects. The updated guidelines clarify and strengthen the responsibilities of all palliative care clinicians for mental health assessment and treatment in all care settings, whether directly, in consultation, or through referral. “Education related to assessment and treatment of psychological and psychiatric aspects of care, including substance use disorder, is an essential element of quality palliative care,” the guidelines said. “Grief assessments and services are fundamental components of the ongoing palliative plan of care.”

Social aspects of care. Assessment of social supports, relationships, practical resources, and safety and appropriateness of the care environment are described in the guidelines. The guidelines state that the palliative care team should use these assessments to determine patients' and families' ability to cope with serious illness and maximize quality of life, in additional to addressing social and functional goals that enable patients to remain in the care setting of choice to the extent possible.

Spiritual, religious, and existential aspects of care. The guidelines outline the responsibility of all those caring for the seriously ill to assess and respond to spiritual care needs and emphasize the need for training for spiritual care providers to care for patients and families. The guidelines note that spiritual care services, including screening, history, and assessment, should be provided on admission and regularly thereafter.

Cultural aspects of care. The guidelines discuss the influence of culture within families and note that assessing and respecting values, beliefs, and traditions related to health, illness, family caregiver roles, and decision making are first steps in providing culturally sensitive palliative care. “In order for patients and family members to receive culturally sensitive care, it is incumbent on professionals to continually explore their own biases, work to suspend judgment, and seek frequent training to further enhance and strengthen their cultural assessment, treatment, and communication skills,” the guidelines said.

Care of the patient nearing the end of life. In the fourth edition, “at the end of life” was changed to “nearing the end of life” to reflect the importance of addressing patients' and families' changing needs, the guidelines said. This edition includes an expanded section on bereavement, emphasizing that all clinicians caring for seriously ill patients should ensure that bereavement services are offered, even when patients are not receiving hospice care.

Ethical and legal aspects of care. The guidelines clearly state that surrogates' obligations in all cases are to represent patients' preferences and best interests rather than their own. For clinicians, “Familiarity with local and state laws is needed relating to advance care planning, decisions regarding life-sustaining treatments, and evolving treatments with legal ramifications (eg, medical marijuana), especially when caring for vulnerable populations, such as minors, prisoners, or those with developmental disability or psychiatric illness,” the guidelines said.

The complete guidelines were published online Oct. 31 and were summarized in an article published Sept. 4 by the Journal of Palliative Medicine. A systematic review of the literature that graded the quality of the evidence on which the guidelines were based was published Oct. 30 by the Journal of Pain and Symptom Management.