CONCEPT OF PALLIATIVE CARE

EVOLVING DEFINITION OF PALLIATIVE CARE

The term "palliative care" was used by Balfour Mount, a Canada-trained physician who served as a visiting professor at the first hospice, St. Christopher's Hospice. Dr. Mount subsequently established a palliative care program at Royal Victoria Hospital in Montreal, the first such program to be integrated in an academic teaching hospital [2]. Since that time, many attempts have been made to craft a definition of palliative care that represents its unique focus and goals. The challenge in defining palliative care has been encompassing all that such care refers to while specifying the timing of it (Table 1) [3,4,5,6,7]. The timing of palliative care remains an important point of discussion. As a result of its roots in hospice care, the term "palliative care" has often been considered to be synonymous with "end-of-life care." However, the current emphasis is to integrate palliative care earlier in the overall continuum of care (Figure 1) [5,8].

EVOLVING DEFINITION OF PALLIATIVE CARE

Year	Source and Definition	Comments
1990	World Health Organization (WHO): "…The active total care of patients whose disease is not responsive to curative treatment."	Does not apply exclusively to palliative care
1993	The Oxford Textbook of Palliative Medicine: "The study and management of patients with active, progressive, far-advanced disease for whom the prognosis is limited and the focus of care is the quality of life."	Lacks essential aspects, such as support provided to families, as well as specificity about timing
2004	National Consensus Project: "The goal of palliative care is to prevent and relieve suffering and to support the best possible quality of life for patients and their families, regardless of the stage of the disease or the need for other therapies…" Palliative care expands traditional disease-model medical treatments to include the goals of enhancing quality of life for patient and family, optimizing function, helping with decision making, and providing opportunities for personal growth. As such, it can be delivered concurrently with life-prolonging care or as the main focus of care.	First definition to reflect integration of palliative care earlier into the disease continuum
2007	WHO (revision): "An approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual."	Improvement over original WHO definition, but expansion of palliative care throughout the continuum of care not explicit
2009	American Society of Clinical Oncology: "Palliative cancer care is the integration into cancer care of therapies to address the multiple issues that cause suffering for patients and their families and have an impact on the quality of their lives. Palliative cancer care aims to give patients and their families the capacity to realize their full potential, when their cancer is curable as well as when the end of life is near."	Defines palliative care for patients with cancer, but definition can be applied to palliative care in all settings

Table 1

Source: [3,4,5,6,7]

EVOLUTION OF THE PALLIATIVE CARE MODEL

Figure 1

Source: [8]

As the definition of palliative care has evolved, end-of-life care has become one aspect of palliative care. The time period assigned to "end of life" has not been defined, with the phrase being used to describe an individual's last months, weeks, days, or hours [9,10]. Designating a specific time period as the "end of life" is further challenged by disease trajectories that differ depending on the underlying life-limiting disease, a problem discussed in the section "Difficulty with Prognostication."

EFFORTS TO ENHANCE PALLIATIVE CARE AT THE END OF LIFE

Since the establishment of the first hospice in the United States in 1974, many initiatives have been undertaken to enhance the quality of care given at the end of life. The lack of progress in relieving end-of-life suffering was highlighted with the publication of findings from the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT) [11,12]. The results of this landmark study indicated that in-hospital deaths were characterized by prolonged suffering, uncontrolled pain, and caregiver hardship. In response, the Institute of Medicine (IOM) commissioned a report on the quality of care at the end of life, and the authors of this report, Approaching Death: Improving Care at the End of Life, noted that too many patients "suffer needlessly" at the end of life and emphasized the need for better training of healthcare professionals and reform of outdated laws that inhibited the use of pain-relieving drugs [13]. A subsequent IOM report pointed out the need for enhanced pediatric palliative care [14]. Several initiatives have been developed to address the deficiencies in the quality of palliative care; to optimize the use of hospice; to help the lay public better understand the meaning of palliative care and hospice and their benefits; and to enhance the knowledge, skills, and attitudes of healthcare professionals. Five organizations—the American Academy of Hospice and Palliative Medicine (AAHPM), the Center to Advance Palliative Care (CAPC), the Hospice and Palliative Nurses Association, the Last Acts Partnership, and the National Hospice and Palliative Care Organization (NHPCO)—joined forces in the National Consensus Project for Quality Palliative Care Consortium and published clinical practice guidelines to help reduce the variation in palliative care programs and enhance continuity of care across healthcare settings [5]. The National Quality Forum (NQF) built on these guidelines when it proposed a national framework for palliative and hospice care [15].
Other efforts included the first core curriculum in hospice and palliative care, created by the AAHPM; the development of the Education in Palliative and End-of-Life Care (EPEC) Project (http://www.epec.net); and the subsequent development of the EPEC-Oncology (EPEC-O) curriculum and the End-of-Life Nursing Education Consortium Project (http://www.aacn.nche.edu/ELNEC).

COMPONENTS OF HIGH-QUALITY PALLIATIVE CARE

Because palliative care focuses on the physical and psychosocial needs of the patient and his or her family, the patient's and family's perspectives are vital considerations in developing high-quality palliative care programs. An early survey of patients with life-limiting diseases identified five priorities for palliative care: receiving adequate treatment for pain and other symptoms, avoiding inappropriate prolongation of life, obtaining a sense of control, relieving burden, and strengthening relationships with loved ones [16]. In another study, a spectrum of individuals involved with end-of-life care (physicians, nurses, social workers, chaplains, hospice volunteers, patients, and recently bereaved family members) echoed these findings, with the following factors being noted as integral to a "good death:" pain and symptom management, clear decision making, preparation for death, completion, contributing to others, and affirmation of the whole person [17].

The priorities set by patients and healthcare professionals were considered carefully in the structuring of clinical practice guidelines for high-quality palliative care developed by the National Consensus Project for Quality Palliative Care. These guidelines are organized according to eight domains [5]:

• Structure and process of care
• Physical aspects
• Psychologic and psychiatric aspects
• Social aspects
• Spiritual, religious, and existential aspects
• Cultural aspects
• Care of the imminently dying patient
• Ethical and legal aspects

In its proposed national framework for palliative and hospice care, the NQF set forth 38 preferred practices based on these eight domains (Table 2) [15].

PREFERRED PRACTICES FOR PALLIATIVE AND HOSPICE CARE

Provide palliative and hospice care by an interdisciplinary team of skilled palliative care professionals, including, for example, physicians, nurses, social workers, pharmacists, spiritual care counselors, and others who collaborate with primary healthcare professional(s). Provide access to palliative and hospice care that is responsive to the patient and family 24 hours a day, 7 days a week. Provide continuing education to all healthcare professionals on the domains of palliative care and hospice care. Provide adequate training and clinical support to assure that professional staff is confident in their ability to provide palliative care for patients. Hospice care and specialized palliative care professionals should be appropriately trained, credentialed, and/or certified in their area of expertise. Formulate, utilize, and regularly review a timely care plan based on a comprehensive interdisciplinary assessment of the values, preferences, goals, and needs of the patient and family and, to the extent that existing privacy laws permit, ensure that the plan is broadly disseminated, both internally and externally, to all professionals involved in the patient's care. Ensure that upon transfer between healthcare settings, there is timely and thorough communication of the patient's goals, preferences, values, and clinical information so that continuity of care and seamless follow-up are assured. Healthcare professionals should present hospice as an option to all patients and families when death within a year would not be surprising and should reintroduce the hospice option as the patient declines. Patients and caregivers should be asked by palliative and hospice care programs to assess physicians'/healthcare professionals' ability to discuss hospice as an option. Enable patients to make informed decisions about their care by educating them on the process of their disease, prognosis, and the benefits and burdens of potential interventions. Provide education and support to families and unlicensed caregivers based on the patient's individualized care plan to assure safe and appropriate care for the patient. Measure and document pain, dyspnea, constipation, and other symptoms using available standardized scales. Assess and manage symptoms and side effects in a timely, safe, and effective manner to a level that is acceptable to the patient and family. Measure and document anxiety, depression, delirium, behavioral disturbances, and other common psychological symptoms using available standardized scales. Manage anxiety, depression, delirium, behavioral disturbances, and other common psychological symptoms in a timely, safe, and effective manner to a level that is acceptable to the patient and family. Assess and manage the psychological reactions of patients and families (including stress, anticipatory grief, and coping) in a regular, ongoing fashion in order to address emotional and functional impairment and loss. Develop and offer a grief and bereavement care plan to provide services to patients and families prior to and for at least 13 months after the death of the patient. Conduct regular patient and family care conferences with physicians and other appropriate members of the interdisciplinary team to provide information, to discuss goals of care, disease prognosis, and advance care planning, and to offer support. Develop and implement a comprehensive social care plan that addresses the social, practical, and legal needs of the patient and caregivers, including but not limited to relationships, communication, existing social and cultural networks, decision making, work and school settings, finances, sexuality/intimacy, caregiver availability/stress, and access to medicines and equipment. Develop and document a plan based on an assessment of religious, spiritual, and existential concerns using a structured instrument, and integrate the information obtained from the assessment into the palliative care plan. Provide information about the availability of spiritual care services, and make spiritual care available either through organizational spiritual care counseling or through the patient's own clergy relationships. Specialized palliative and hospice care teams should include spiritual care professionals appropriately trained and certified in palliative care. Specialized palliative and hospice spiritual care professionals should build partnerships with community clergy and provide education and counseling related to end-of-life care Incorporate cultural assessment as a component of comprehensive palliative and hospice care assessment, including but not limited to locus of decision making, preferences regarding disclosure of information, truth telling and decision making, dietary preferences, language, family communication, desire for support measures such as palliative therapies and complementary and alternative medicine, perspectives on death, suffering, and grieving, and funeral/burial rituals. Provide professional interpreter services and culturally sensitive materials in the patient's and family's preferred language. Recognize and document the transition to the active dying phase, and communicate to the patient, family, and staff the expectation of imminent death. Educate the family on a timely basis regarding the signs and symptoms of imminent death in an age-appropriate, developmentally appropriate, and culturally appropriate manner. As part of the ongoing care planning process, routinely ascertain and document patient and family wishes about the care setting for the site of death, and fulfill patient and family preferences when possible. Provide adequate dosage of analgesics and sedatives as appropriate to achieve patient comfort during the active dying phase, and address concerns and fears about using narcotics and of analgesics hastening death. Treat the body after death with respect according to the cultural and religious practices of the family and in accordance with local law. Facilitate effective grieving by implementing in a timely manner a bereavement care plan after the patient's death, when the family remains the focus of care. Document the designated surrogate/decision maker in accordance with state law for every patient in primary, acute, and long-term care and in palliative and hospice care. Document the patient/surrogate preferences for goals of care, treatment options, and setting of care at first assessment and at frequent intervals as conditions change. Convert the patient treatment goals into medical orders, and ensure that the information is transferable and applicable across care settings, including long-term care, emergency medical services, and hospital care, through a program such as the Physician Orders for Life-Sustaining Treatment (POLST) program. Make advance directives and surrogacy designations available across care settings, while protecting patient privacy and adherence to HIPAA regulations, for example, by using Internet-based registries or electronic personal health records. Develop healthcare and community collaborations to promote advance care planning and the completion of advance directives for all individuals, for example, the Respecting Choices and Community Conversations on Compassionate Care programs. Establish or have access to ethics committees or ethics consultation across care settings to address ethical conflicts at the end of life. For minors with decision-making capacity, document the child's views and preferences for medical care, including assent for treatment, and give them appropriate weight in decision making. Make appropriate professional staff members available to both the child and the adult decision maker for consultation and intervention when the child's wishes differ from those of the adult decision maker.