A. For more than 40 years, the venue for end-of-life care has been the hospice setting. Due to multiple barriers, hospice has been underutilized in the United States. However, since the enactment of the Patient Protection and Affordable Care Act in 2010, attention to end-of-life care issues and use of hospice and palliative care services have been increasing.

B. Studies have consistently demonstrated that when patients are asked about their desires for end-of-life care, they indicate that they wish to die peacefully, with dignity and free of physical symptoms, and they do not want to die alone. They also share their preference to receive care that is person centered and in accordance with personal (especially spiritual) beliefs and in ways that honor the individual’s life, culture, and value system and do not present a burden to the family, friends, and support system.

C. Over the past several years, demand for palliative and hospice care has grown tremendously. Palliative care and hospice care are provided across a variety of health care settings and professional disciplines. These areas of health care will continue to grow as the American population continues to age and seek desired alternatives to having their health care services met.

D. Since the advent of Education on Palliative and End-of-life Care (EPEC) and End-of-life Nursing Education Consortium (ELNEC), there has been an increasing understanding of the importance of symptom control (e.g., pain management and comfort care), advanced care planning, hospice care and patient’s preferences, quality of life, and end-of-life care.

E. One long-standing barrier has been the lack of understanding by patients and health care providers, including physicians, about Medicare benefits for hospice and palliative care and misperception that palliative and end-of-life care are for individuals who are left with a limited number of days or weeks to live.

F. With the explosive growth of palliative care in hospitals and fledgling growth in the community, there has been further confusion with respect to the two levels of palliative care: primary and specialty care levels. Case managers must be aware of these levels and educate other health care team members and patients.

G. The impact of increased cost to consumers and decreased insurance coverage for service delivery including Medicare capitation for end-stage illness has increased the need for palliative and hospice services in the community.

H. The number of palliative care and hospice programs has grown in recent years in response to the growth in the population living with chronic, debilitating, and life-threatening illnesses. For example, in 2013, the number of hospice programs has grown to over 5,800 compared to 5,560 in 2012 (NHPCO, 2014).

I. Timely referrals to palliative care programs and hospice result in beneficial effects on patients’ symptoms, reduced hospital costs, a greater likelihood of death at home rather than at an institutionalized facility, and a higher level of patient and family satisfaction than does conventional care.

A. Advance directive—Legally executed document that explains the patient’s health care-related wishes and decisions. It is drawn up while the patient is still competent and is used if the patient becomes incapacitated or incompetent.

B. Advance care planning—Involves multiple steps designed to help individuals learn about the health care options that are available for end-of-life care, determine which types of care best fit their personal wishes, and share their wishes with family, friends, and their physicians.

C. End-of-life care—Care provided by the health care team during the last few months of a person’s life and when experiencing an end-stage illness that is life threatening or steadily progressing toward death. It is an integrated, patient-centered/family-centered and compassionate approach to care that is guided by a sense of respect for one’s dignity and comfort. It also addresses the unique needs of patients and their families at a time when life-prolonging interventions are no longer considered appropriate or effective.

D. Futile care—The continued provision of medical care, treatments, and interventions to a patient where the prognosis is poor and when there is no reasonable hope of a cure or benefit.

E. Good death—Death that is free from avoidable distress and suffering for patients and their families and in accordance with the patient’s and family’s wishes. It is care that is considered reasonable and consistent with clinical, cultural, and ethical standards of care.

F. Health care proxy—A legal document that directs whom the health care provider/agency should contact for approval/consent of treatment decisions or options when the patient is no longer deemed competent to decide for himself or herself.

G. Hospice care—A model of quality and compassionate care at the end of life. It focuses on caring not curing and the belief that each person has the right to die pain free and with dignity.

H. Palliative care—A health care approach that seeks to provide the best possible quality of life for people with chronically progressive or lifethreatening illnesses and in accordance with their particular values, beliefs, needs, and preferences.

I. Patient self-determination—Making treatment decisions, such as designating a health care proxy, establishing advance directives, deciding to refuse or discontinue care, and choosing to not be resuscitated or to withdraw nutritional support.

J. Primary palliative and hospice care level—Palliative and hospice care provided by the same health care team responsible for routine care of the patient’s life-threatening or life-limiting illness.

K. Specialty palliative and hospice care level—Palliative and hospice care provided by a specialized health care team, with appropriately trained and credentialed professionals, such as physicians, nurses, social workers, chaplains, and others.

A. The Case Management Society of America (CMSA) describes in its standards of practice for case management that case management extends across all health care settings, including payer, provider, government, employer, community, and home environment, and various patient populations (CMSA, 2010). Effective palliative and hospice programs are those available in these various settings, thus, allowing case managers the opportunity to be actively involved in the care of this special population at the various stages of illness.

B. The number of adults who face a life-limiting or progressively worsening chronic disease(s) continues to rise. It is estimated that 90 million people in the United States live with at least one chronic illness, and 7 out of 10 die people from chronic disease (Wennberg, 2008). Some of these patients may benefit from palliative or hospice care, and case managers can assist in ensuring patient’s access to such services.

C. Similar to case management practice and programs described in CMSA’s standards, palliative care and hospice care are provided in a variety of care settings, such as the following:

D. Palliative and hospice care and services are beneficial to patients with any terminal illness or of any age, gender, religion, or race. The population served by palliative and hospice care is naturally a subset of that served by case managers. Therefore, case managers must be knowledgeable in identifying the patients who would benefit from these specialized services and facilitate timely access to them. They can apply the CMSA standards of practice for case management in this area of specialty practice.

E. The goal to maintain the best quality of life is important for every patient diagnosed with a life-limiting illness such as cancer. Research, however, shows that people with a terminal diagnosis often either do not receive palliative care or hospice or, if offered, it is too late in the course of the disease to make an impact on patient care outcomes including experience of care (Temel et al., 2010). Case managers in their roles almost in every health care setting are able to change this and enhance patient’s timely access to palliative and hospice care.

F. Although the CMSA standard of practice pertaining to ethics applies to all aspects of case managers’ practice and case management programs, it has specific and sensitive applicability when caring for patients with end-of-life issues and those with complex, chronic, and terminal illnesses.

A. Palliative care can be integral to end-of-life care in that it generally focuses on managing symptoms and providing comfort to patients and their families. While palliative care is common among people receiving end-of-life care, it is not necessarily restricted to people with terminal illnesses.

B. Palliative care is both a philosophy of care and an organized, highly structured care delivery system. The recent increase in popularity of palliative care has challenged the traditional assumption that more intensive and acute care is better for the management of patients with multiple chronic illnesses and that such means better care and enhances patient/family satisfaction.

C. Today, palliative care has demonstrated that it provides quality and safe care and improves outcomes (Box 8-1).

D. Palliative care can be delivered by an interdisciplinary health care team concurrently with medical life-prolonging measures or as the main focus of care. It may begin at the time a life-threatening, life-limiting, or debilitating illness or injury is diagnosed and continues through care or until after the patient’s death—that is, into the family’s bereavement period.

E. Palliative care is best defined as an interdisciplinary and system of care that aims to relieve suffering and improve quality of life for patients with advanced illness and their families. It is offered simultaneously with all other appropriate medical treatment (Meier, 2006) (Fig. 8-1).

F. Palliative care involves addressing the physical, intellectual, emotional, social, and spiritual needs of patients and their families. It facilitates the patient’s autonomy, self-determination, access to critical information, and right to choice of care and treatment options.

G. Palliative care programs aim to improve or optimize the quality of life for patients with advanced illness in collaboration with their families and caregivers. This is achieved by anticipating, preventing, and treating suffering.

H. The delivery of palliative care may occur in the setting of the administration of life-prolonging therapy (e.g., acute care/hospital stay) or in a setting where the sole aim is amelioration of suffering (e.g., patient’s home or a hospice facility).

I. Palliative care may require end-of-life care and services. The delivery of such services necessitates the involvement of health care professionals who possess specialized skills, knowledge, and competencies in caring for the terminally ill at the end stage of illness or when nearing death.

J. Medicare’s hospice benefit also covers palliative care for beneficiaries with terminal illness.

A. Hospice care is a service delivery system that provides comprehensive and compassionate care for patients suffering from a terminal illness and who have a limited life expectancy—generally 6 months or less if the disease follows its usual course.

B. The hospice benefit is designed to cover the needs of a patient with respect to physician services, medications, durable medical equipment, nursing services, home health aid, social services, and spiritual care. Essentially, costs are related to the services required to care for the terminal diagnosis for which a patient is on hospice care.