Recent growth in palliative care and hospice programs reflects the greater number of patients with chronic, debilitating, life-threatening illness and the increasing interest of health care professionals in finding appropriate care for these patients. The National Consensus Project for Quality Palliative Care, representing five major U.S. palliative care organizations, has established guidelines to promote consistent and high-quality palliative care and to guide the structure and development of existing services. These guidelines were developed by a group of experts but did not include a systematic evaluation of study quality or rating of the strength of recommendations. The guidelines apply to primary care and subspecialist delivery and should be considered goals to strive for, not the lowest acceptable practices. The complete document is available online athttp://www.nationalconsensusproject.org.

Definition

Palliative care serves patients of all ages who have a chronic illness, condition, or injury that adversely affects daily functioning or reduces life expectancy. This care is given by an interdisciplinary team that encompasses several fields and may include volunteer coordinators, bereavement coordinators, chaplains, psychologists, pharmacists, nursing assistants, home attendants, dietitians, therapists (e.g., physical, occupational, art, play, child life, music), case managers, and trained volunteers. In addition to the physical aspects of illness, palliative care addresses psychological, spiritual, and practical matters. The unit of care comprises the patient and his or her family as defined by the patient or a surrogate; family members are not necessarily related to the patient but have a significant relationship and provide support.

Palliative care is a growing practice specialty, but it also is a general approach to patient care that should be integrated into daily clinical practice; it can be the main focus of care or can be given together with life-prolonging treatment. Ideally, palliative care begins when the condition is diagnosed and continues through cure or until death and family bereavement. Palliative care generally is given in multiple settings, including physicians’ offices, hospitals, school clinics, nursing homes, emergency facilities, and the home (Table 1). This necessitates fundamental palliative care training for physicians across many treatment settings, access to formal palliative care teams and qualified specialists, and the establishment of referral patterns. Primary care physicians are expected to provide basic palliative care, such as pain assessment and management, as part of their routine services. In more complex situations, the patient or family may need the services of palliative care specialists.

Goals of Care

The main goals of palliative care are to prevent and relieve suffering and to enable the best quality of life possible for patients and their families, no matter what the stage of disease or the need for other treatments. Physical symptoms and side effects, psychological and psychiatric issues, and spiritual and existential dimensions should be assessed and responded to based on the best available evidence. Continuity of care and communication among the varied settings involved should be promoted and facilitated to help achieve these goals and to prevent feelings of abandonment. Core outcomes of palliative care are listed in Table 2.

Care Team: Skills and Support

Members of the care team should be skilled in the care of the patient population to be served. Team members must have effective communication skills in order to determine the goals and preferences of the patient and family and to provide help with medical decision making. Palliative care is integral to all health care settings, and the care team must collaborate with professionals in each setting to ensure coordination and continuity of care and prevent crises and unnecessary transfers. The team also should ensure equal access for all patient populations, diagnostic categories, and health care settings, regardless of the patient’s race, sexuality, or ability to pay for care. Team members should have knowledge of prognostication, the signs and symptoms of imminent death, and the needs of the patient and family before and after death.

SPECIALIST-LEVEL SKILLS

Collectively, the team should have specialist-level skills in physical, social, psychological, spiritual, and legal aspects of medical care. These include symptom control; assessment and management of social and practical needs; understanding of psychological consequences and psychiatric comorbidities of serious illness (e.g., depression, anxiety, delirium, cognitive impairment); assessment of and response to spiritual and existential issues; and the ethical, legal, and regulatory facets of medical decision making (e.g., advance care planning and directives, roles and responsibilities of surrogate decision-makers, legal requirements for use of controlled substances, pronouncing death, and request for autopsy and organ transplant).

SUPPORT FOR THE TEAM

Support for team education and training, as well as for the emotional impact of providing care, should be available. Volunteers should receive the education necessary, and policies should guide recruitment, screening, training, work practices, support, supervision, and performance evaluations. Staff and volunteers who provide bereavement services should receive ongoing education, supervision, and support. Regular meetings should be held for review and discussion of the effects and processes of providing palliative care.

SUPPORT FOR THE FAMILY

The patient and family should have access to palliative care expertise and staff 24 hours per day, seven days per week; respite services also should be available. The family should be educated about and assisted in providing the patient with safe, appropriate comfort measures and psychological support, and the family should be provided with backup resources for response to urgent needs. Routine meetings should be conducted with the patient and family to provide information, assess understanding, address questions, determine wishes, help with decision making, discuss goals of care and advance care planning, provide emotional and social support, and enhance communication.

REFERRALS

Patients and families should be informed about and offered referral to hospice and other community-based health care resources. Referrals to health care professionals with specialized skills must be made when clinically indicated (e.g., psychiatric comorbidities in family or caregivers). Referrals should be made to appropriate services that meet identified social needs and promote access to care; help in the home, school, or work; transportation; rehabilitation; medications; counseling; community resources; and equipment. Referrals to ethics consultants or a committee may be appropriate.

Care Plan: Assessment and Communication

The plan of care is determined by the goals of the patient and family with guidance from the health care team. It is based on regularly reviewed, comprehensive, coordinated, interdisciplinary assessment carried out with validated instruments where possible. Assessment tools may include interviews with the patient and family, reviews of medical records, discussion with other health care professionals, physical examination and assessment, and laboratory or diagnostic tests or procedures.

The care plan changes according to the evolving needs and preferences of the patient and family, and may involve additional input from other specialists and caregivers such as school professionals, clergy, or friends. Disease status, comorbid disorders, physical and psychological symptoms, functional capacity, age and neurocognitive development (in children), and cultural and spiritual preferences must be considered (Table 3), with attention given to the changing benefit and burden assessment at critical points throughout the illness and the need for higher intensity of care at impending death. The care team should help patients and families understand any changes that occur in the condition and how they affect ongoing care and goals of treatment.

The evolving care plan should be documented clearly throughout, including alternative options for settings and treatment, and should be conveyed to all involved. Members of the care team should communicate regularly (at least weekly) to plan, review, and evaluate the care plan, with input from patient and family. Adult patients with decisional capacity should determine the level of involvement of the family in decision making and communication about the care plan. The views and preferences of minors with decision-making capacity, including assent for treatment, should be documented and given appropriate weight in decision making; a child whose wishes differ from those of the adult decision maker should receive assistance from appropriate professional staff members. Routine collaboration should occur between palliative and hospice care programs and other major community providers to ensure continuity of care. Policies should be established for formal written and verbal communication among those involved in the patients’ care to enable timely and effective sharing of information among teams while safeguarding privacy.

Treatment

Treatment decisions should be made according to goals of care, assessment of risk and benefit, best evidence, and the preferences of the patient and family. The goal of pain and symptom management is the safe and timely reduction of pain and symptoms to a level that is acceptable to the patient. Treatment should incorporate pharmacologic, nonpharmacologic, and complementary therapies. Barriers to effective pain management (e.g., fears of side effects, addiction, respiratory depression) should be recognized and addressed. If controlled substances are prescribed for long-term symptom management, a risk-management plan should be implemented. Palliative care professionals should work with policy makers, law enforcement representatives and regulators to ensure that efforts to address drug abuse do not interfere with the care of patients who are in pain. In addition to physical aspects, treatment should address psychological needs, psychiatric disorders, and healthy adjustment, and should support emotional growth and completion of unfinished business.

Care Setting

The care setting should meet the preferences of the patient and family whenever possible. When care is provided away from the patient’s home, the setting should address safety; flexible visiting hours; space for families to visit, rest, eat or prepare meals, and meet with the palliative care team; privacy; child-specific needs; and other needs identified by the family. Any inability to meet patient and family wishes regarding care setting for the death should be reviewed and addressed by the palliative care team.

End of Life and Bereavement

As the patient’s health declines, the hospice referral option should be introduced (or reintroduced) for those who have not accessed hospice services. When possible, the transition to the actively dying phase should be recognized and communicated to the patient, family, and staff. End-of-life concerns, hopes, fears, and expectations should be addressed openly and honestly, with support offered for issues of life completion according to the patient’s and family’s cultural and religious values. Education regarding the signs and symptoms of approaching death should be given to the family in a developmentally, culturally, and age-appropriate manner. Pastoral care and other palliative care professionals can facilitate religious or spiritual rituals and contacts with spiritual communities, groups, or individuals, as desired by the patient or family. Bereavement services and follow-up are a core component of the palliative care program and should be made available to the family for at least 12 months after the death of the patient.

Ethical and Legal Aspects

The palliative care program must be aware of and address the complex ethical issues arising in the care of persons with life-threatening debilitating illness, recognizing cultural variations. The care team should ensure that patients and families are aware of the need to seek professional advice about creating or updating property wills and guardianship agreements. Surrogate decision makers should be assisted with the legal and ethical bases for surrogate decision making, such as honoring the patient’s known preferences, substituted judgment, and best-interest criteria. Promotion of advance care planning helps communicate the patient’s or surrogate’s preferences across the health care continuum. When patients are unable to communicate, the palliative care program should identify advance care directives, evidence of previously expressed wishes, and the appropriate surrogate decision makers. The team must advocate for the observance of the patient’s or surrogate’s previously expressed wishes, when necessary.

Care should be consistent with existing professional codes of ethics for all relevant disciplines. Ethical concerns that are commonly encountered in palliative care (e.g., beneficence, self-determination, capacity assessment, informed consent) must be recognized and addressed. The care team should be aware of dilemmas related to specific interventions—such as withholding or withdrawing treatments (including nutrition and hydration), instituting “do not resuscitate” orders, and the use of sedation—and should use ethical principles to prevent or resolve them.

Quality Improvement

Quality care must be attentive to safety, error reduction, timeliness, patient preferences, benefit and effectiveness, equity of access, and efficiency. Regular and systematic evaluation should be used to monitor program quality, and findings should influence clinical practice. The care team should meet regularly to discuss provision of quality care, including staffing, policies, and clinical practices. Quality improvement activities should be collaborative, with input from patients, families, health professionals, and the community, and should focus on meeting the needs of those receiving care.