END-OF-LIFE CARE Chapter 23 Handbook of Health Social Work, 2 nd Edition CHAPTER OBJECTIVES Chapter Objectives: Define end-of-life care and palliative care at end-of-life. Describe the roles that social workers can play in end -of-life care. Describe the importance of effective communication so that patient and family needs are expressed and appropriate end -of-life care is facilitated. Understand the process of end-of-life planning, including advance directives, to promote informed choices, and help patients and families to clarify and communicate their preferences. Demonstrate an understanding of factors that influence the death & dying experience of cultural groups & disadvantaged persons at the end of life. Describe contemporary grief and loss theories. PALLIATIVE CARE Interdisciplinary care model that focuses on the comprehensive management of physical, psychological, and existential distress. Defined as “the active total care of patients whose disease is not responsive to curative treatment.” The goal of palliative care is the achievement of the best possible quality of life for patients and their families. PALLIATIVE CARE MODEL The model applies throughout the course of illness and attempts to address the physical, psychosocial, and spiritual concerns that af fect both the quality of life and the quality of dying for patients with life -limiting illnesses at any phase of the disease. Includes interventions, respects family values and decisions. Social worker can educate the family about expected symptoms and their management, clarify information about medications and medical procedures, facilitate communications with the healthcare team, help them make decisions about practical and financial changes, and teach them ef fective coping skills. HOSPICE Emphasis of hospice care is on comfort at the end of life through control of pain and other symptoms. Rather than relying on curative interventions & technology it focuses on the natural approaches. Hospice care focuses on caring, not curing, and in many cases is provided in the patient’s home. Hospice care is also provided in hospice centers, hospitals, nursing homes, and other long term care facilities. SIGNIFICANT BARRIERS Barriers to effective end-of-life care exist and include: attitudes about death and dying, inconsistent communication between patients and the healthcare team, insufficient training of healthcare providers, physicians’ inexperience with providing care, lack of access to care, and inconsistent reimbursement. RECOMMENDATIONS Reliable & skillful supportive care should be provided to patients & families facing the end of life. Healthcare professionals should know and use ef fective interventions to prevent and relieve pain and other symptoms. Palliative care should be recognized as a defined area of expertise, education, and research. The public should be educated about end -of-life care and advance care planning. Tools should be developed for improving patients’ quality of life, and healthcare organizations should be required to use them. INTERDISCIPLINARY TEAMWORK Individuals at the end of life care often move between various healthcare settings, from home to acute or long term care facilities, outpatient or inpatient, home health care, and hospice settings. The involvement of an interdisciplinary care team is an excellent solution to care coordination problems. These include: Patient, Patient’s family or caregiver, palliative care or hospice physician, patient’s personal physician, nurses, social workers, clergy, pharmacists, home health aides, trained volunteers, and physical, occupational and speech therapists, if needed. COMMUNICATION ABOUT DEATH AND DYING Patients, families, and social workers may be influenced by misconceptions about death and dying. To communicate clearly at the patient’s end of life, social workers must focus on providing clinical care that supports the patient and underlying family values and meanings. Open ended questions are useful in gathering information from the patient and the family. Listening to the patient and family, sharing reflective comments about the dif ficulty of the situation with them, acknowledging their fears and apprehensions, showing concern and looking into their eyes are simple actions which communicate understanding. END-OF-LIFE CARE FOR A CHILD It is important that the individual social worker’s professional and personal challenges are addressed in caring for terminally ill children and their families. The key for the social worker is to recognize the critical role of encouraging and supporting parents in expressing their true feelings, concerns, and goals. Children need to know that they are not responsible for their illnesses. Sharing information in a way that is cognitively and developmentally appropriate is essential. SPIRITUALIT Y Facing death often forces individuals to consider spiritual or existential issues that can be central to end -of-life care. Social workers must be sensitive to these concerns in their patients and be willing to asset with their spiritual explorations. When patients and caregivers express religious and spiritual concerns, the social workers role is to listen so that she can help them find ways to address their needs. DIVERSIT Y AND HEALTH DISPARITIES Death and dying among members of dif ferent racial or ethnic groups and disadvantaged persons pose tremendous challenges to social workers. Cultural and economic factors play a significant part in health care, health care decision making, and end -of-life experiences. Health care is less accessible to disadvantages individuals, including people of color, immigrants, older individuals, children, women, the poor and uninsured, and those who are in institutions. CULTURE Culture influences what is considered a health problem, how symptoms are expressed and discussed, how healthcare information is received, what type of care should be given and how rights and protections are exercised. The need to provide culturally competent care has been emphasized in many arenas, that is to respect and maintain sensitivity to issues related to an individuals culture, race, gender, sexual orientation, and socioeconomic status while providing optimal end -of-life care. CULTURE COMPETENCE Cultural competence is defined by the NASW, as the “process by which individuals and systems respond respectfully and ef fectively to people of all cultures, languages, classes, races, ethnic backgrounds, religions, and other diversity factors in a manner that af firms, and values, the worth of individuals, families, and communities and protects and preserves the dignity of each.” The standards address the following areas: ethics and values, self-awareness, cross-cultural knowledge, cross -cultural skills, service delivery, empower point and advocacy, diverse workforce, professional education, language diversity, and cross-cultural leadership. ADVANCE DIRECTIVES • Advance directives are written documents completed by the individual that specify treatment preferences for healthcare decision making, particularly end -of-life care and whether to use life-sustaining treatment. • The most common advance directives are the health care proxy( durable power of attorney for health care) and living will. • Multiple types of durable power or attorney are available, covering business, financial, or healthcare decisions. LIVING WILL Living will is a directive to a physician and healthcare team that statesperson’s wishes about what life -prolonging treatment should be provided or withheld should they lose the ability to communicate those wishes. Life-prolonging therapies include mechanical ventilation, blood transfusions, dialysis, antibiotics, and artificially provided nutrition and hydration. Social workers may need to be proactive in educating disadvantaged persons about the value of advance directives and help them with end -of-care planning. UNDERSTANDING LOSS Understanding the common, natural responses to loss can facilitate a social worker’s ability to prepare patients and families with anticipatory guidance and help them normalize the possible and often uncomfortable expressions of grief. Loss is often thought of in relation to the death of a significant loved or valued person. This can include one’s self, spouse or partner, siblings, children, and other relatives. For the person who is dying, the end of life also brings the loss of part of the self, which includes physical, psychosocial, and social losses. GRIEF Conceptualized grief falls into three broad categories: avoidance, confrontation, and reestablishment. The tasks of the griever are then to: 1 .)Acknowledge, accept and understand the reality of loss. 2.) Experience the pain of the grief and react to the separation from which was lost. 3.)Adapt to a new way of life. 4.) Reinvest in a new way of life. Grievers may feel overwhelmed by the intensity of their emotions and exhausted by the process. COPE Factors that influence how individuals cope with loss include childhood, adolescence, and adult experiences of loss and how recently those losses occurred; successful or unsuccessful resolution of losses; previous mental health problems; and any physical health problems, life crises, or life changes prior to the current loss. Grief counseling involves normalizing the grieving person’s feelings and behavior and helping the griever identify and express his feelings, actualize the loss, facilitate his ability to live without the deceased person, reengage with life, and provide continuing support throughout the process. ANTICIPATORY MOURNING Anticipatory mourning is, “the phenomenon encompassing seven generic operations grief and mourning, coping, interaction, psychosocial reorganization, planning, balancing conflicting demands, and facilitating an appropriate death that, within a context of adaptational demands caused by the experiences of loss and trauma, is stimulated in response to the awareness of life -threatening or terminal illness in oneself or a significant other and the recognition of associated losses in the past, present, and future.” COMPLICATED GRIEF Four complicated grief reactions: Chronic grief- that is prolonged, is excessive in duration, and never comes to a satisfactory conclusion. Delayed grief- is an emotional that has been “inhibited, suppressed, or postponed”. A subsequent loss may elicit an exaggerated reaction because the bereaved is grieving for two losses. Exaggerated grief- occurs when feelings of fear, hopelessness, depression, or other symptoms become so excessive that they interfere with the daily existence of the bereaved. Masked grief- includes symptoms and behaviors experienced by a person who does not recognize the fact that they are related to loss. DISENFRANCHISED GRIEF • Grief experienced in connection with a loss that is not socially acknowledged, publicly shared, or supported through using rituals. • It is experienced when the relationship between the deceased person and the bereaved survivor is not socially sanctioned the person is suf fering the loss is given little or no opportunity to mourn publicly. • Social workers who become close to patients who die can also be disenfranchised mourners. SOCIAL WORK ROLE Social work involvement in hospice operations is correlated significantly with reduced patient care costs. NASW began an initiative to increase social worker’s awareness of end-of-life issues, to create and advocate for more education and training opportunities in the field, and to promote the value of social work in palliative care, hospice care and other end-of-life practice areas. COMPASSION FATIGUE Social work and other healthcare professionals who work in end-of-life care experience a great deal of trauma of illness and death. Compassion fatigue= also referred to secondary trauma, is the natural, predictable, treatable, and preventable stress resulting from helping a traumatized or suf fering person. Some professionals may be more vulnerable than others to compassion fatigue due to, for example, multiple losses, unresolved personal trauma, or insuf ficient recovery time.