Case Studies of Legal Issues End of Life

Social workers

Clergy/pastoral counselors

Pharmacists

Home health aides

Trained volunteers

Physical, occupational, and speech therapists, if needed

Interdisciplinary teams are common in both hospice and inpatient palliative care settings. The team meets on a regular basis to discuss the patients in their care and to develop individualized care plans that focus on each patient's well-being and need for pain management and symptom control. To varying degrees, private and public insurance companies pay for end-of-life care services for patients who need them, such as medication and treatments, medical equipment and miscellaneous procedures, and tests necessary to provide comprehensive comfort care. Comprehensive care can include nursing, physician, and social work services along with homemaker (e.g., light housekeeping and meal preparation) and personal care (e.g., bathing and dressing) services.

COMMUNICATION: TALKING ABOUT DEATH AND DYING

Patients, families, and social workers may be influenced by misconceptions about death and dying. They may believe that it is depressing to talk about death or that dying patients and families want to talk only about positive things. They may think that talking about dying will make patients and families upset and angry, that individuals do not always know that they are dying, or that dying children do not know how to communicate their concerns and fears, for example. These myths and misconceptions often impede the ability to communicate effectively with patients and their significant others. 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. Effective communication is critically important to understanding the experiences of others.

Social work traditionally has emphasized therapeutic communication with active listening. For effective communication with patients and caregivers facing the end of life, the first and most important skill that all social workers must develop is listening. Being fully “present” with another person is essential to effective communication. Asking questions or soliciting comments requires truly listening to responses. Listening involves paying attention not just to the words spoken but to all other verbal and nonverbal cues that are communicated simultaneously, no matter how subtle. Much information can be gained by listening to language content and style, choice of words, pauses, silences, body posture, mood, and facial expressions.

Open-ended questions are useful in gathering information from the patient and family. In contrast to closed-ended questions (which only allow yes, no, or another fixed response), asking open-ended questions provides an opening or invitation for patients and families to share information that is important to them. Gaining an understanding of the patient's concerns and style of communication enables social workers to provide the information the patient and family desire in a manner that they can understand (Byock, 1998). Rather than asking closed-ended questions, the social worker can ask questions that will elicit more information, such as “Can you tell me what you understand about the changes in your loved one's condition?” Reflective statements also help to clarify the social worker's and the patient's understanding. An example of a reflective statement is “What I heard you just say is _____________. Is this correct? Is that what you intended?”

The ability to make empathic statements, demonstrating an awareness of and sensitivity to another's feelings, thoughts, and experiences (without having the same feelings, thoughts, and experiences of another), is easy for some and difficult for others, but it is a simple skill that can be learned and practiced. Listening to the patient and family, sharing reflective comments about the difficulty of the situation with them, acknowledging their fears and apprehensions, showing concern and looking into their eyes if appropriate are all simple actions that communicate understanding of the patient's experience. Additional techniques for gathering information can be found in Chapter 10 in this book.

Communicating with a child who is dying is a special challenge for families and health-care professionals. The death of a child is a unique tragedy, and adults, including social workers, may feel a profound need to protect and nurture the child and themselves against the loss, pain, and suffering inherent in the dying process. For these and many other reasons, communicating with dying children is difficult, and the resulting discomfort may prevent a social worker from exploring the important needs and concerns of children and their parents.

END-OF-LIFE CARE CONCERNS RELATED TO A DYING CHILD

Social workers are well equipped to help prepare parents and families to meet the emotional needs of a dying child. Parents and family members are faced with many issues, including concern that they may not be providing care as well as the health-care team in the hospital. They need to know that they are doing all that they can to care for the dying child.

It is important that the personal and professional challenges of the individual social worker are addressed in caring for terminally ill children and their families. When this is done, social workers are better able to offer support to other members of the health-care team. Health-care professionals, especially physicians, often find it extremely difficult to tell parents that there is no longer any effective cure-oriented treatment for their child. However, if parents are supported in discussing treatment focused on the end of cure with providers and the need to move to comfort (palliative) care, most end-of-life care providers may be better able to communicate more directly and effectively. 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 are never too young to be told that they or someone close to them is dying (Silverman, 1999). Dying children often know they are dying. Failing to acknowledge death creates a barrier between the child and the adults who are caring for her. Sick children have a common fantasy that they are responsible for their own illnesses; being sick can be interpreted as punishment. Many children who choose not to discuss painful feelings may be trying to protect their parents and siblings from further emotional pain. In the absence of honest discussion, silence only reinforces this and other misconceptions that the child and his or her siblings create. It isolates the child and limits the sharing needed for coping with overwhelmingly difficult experiences. Dying children experience feelings similar to dying adults: anxiety, fear, loneliness, and depression as well as hope and love. 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.

Dying children of any age, as well as their siblings, have the capacity to communicate their concerns clearly. The ways children communicate depend on their age and developmental stage. Verbal language must be adapted to a conceptual level and vocabulary that the children can understand. Children may express their fears, worries, or concerns directly, indirectly, or symbolically. They can communicate in many ways other than direct conversation. Music, art/drawing, drama/storytelling, and play are some expressive therapies that can be used to foster effective communication with children.

SPIRITUALITY

Facing death often forces individuals to consider spiritual or existential issues that can be central to end-of-life care. Spirituality can be a profound resource for coping with the challenges of all aspects of life and death. Social workers in end-of-life practice must be sensitive to these concerns in their patients and be willing to assist with their spiritual explorations.

As defined by the Merriam-Webster Dictionary (2004), religion is “the service and worship of God or the supernatural,” “a commitment or devotion to religious faith or observance” or a “personal set or institutionalized system of religious attitudes, beliefs, and practices.” In contrast, spirituality is defined as a sensitivity or attachment to religious values, the quality or state of being spiritual. Spirituality is related to the human spirit as opposed to material or physical things. Definitions of religion and spirituality can be found in the literature discussing the integration of spirituality and mental health practices. Mauritzen (1988) defines spirituality as

the human dimension that transcends the biological, psychological and social aspects of living. It is the “agent” for the integration a person's identity and integrity. In very general terms the spiritual dimension is the “agent” for an individual's existence as a person. (pp. 116–117)

Constructing a universal definition of spirituality, however, is difficult. It is important to be aware of the patient's and family's spiritual belief system; awareness and appreciation of a patient's spiritual orientation is essential to end-of-life care. Impending loss and the reality of death may shake people's spiritual beliefs and may leave them feeling angry or hopeless. For believers and nonbelievers, atheists or agnostics, the need to make sense of impending death is central to a person's struggles regarding meaning at the end of life.

Working in end-of-life care also may raise spiritual issues for the social worker. Witnessing the suffering of others or coping with the stress of working with dying individuals and their families may challenge the social worker's basic religious or spiritual beliefs. It may require the professional to deal with countertransference issues related to suffering and death (Katz & Johnson, 2006). Before social workers can help with these existential concerns, they must understand their own spirituality and religious beliefs and the influence of these beliefs on their professional and personal lives. When patients and caregivers express religious and spiritual concerns, the social worker's role is to listen so that she can help them find ways to address their needs.

DIVERSITY AND HEALTH DISPARITIES IN END-OF-LIFE CARE

All individuals’ life experiences contribute greatly to the complexity and uniqueness of the end-of-life issues that we all face. These experiences, as much as anything, shape our desires and beliefs about health, illness, death, and dying. The Diversity Committee of the Last Acts Coalition (2001) advocates recognition, acceptance, and support of its recommendations concerning individuals’ experiences with race; historical oppression; war and its aftermath; cultural, religious, and spiritual practices; affectional orientation; discrimination; and poverty. The true meaning of diversity (especially as it affects the end of life) is as much about these unique, view-shaping experiences as about the narrower yet more common concept that focuses on ethnicity or religion (Last Acts Coalition, 2001, p. 3). Death and dying among members of different racial or ethnic groups and disadvantaged persons can 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 disadvantaged individuals, including people of color, immigrants, older individuals, children, women, the poor and uninsured, and those who are in institutions (i.e., nursing homes and prisons) (Smedley, Stith, & Nelson, 2002).

Because of group differences in health, the U.S. Congress requested a report from the IOM. Disparities consistently were found across disease areas, clinical services, and clinical settings (Smedley et al., 2002). The focus of the IOM report was on conscious and unconscious discrimination or bias and its effect on health-care delivery. The IOM's general recommendation was to increase awareness of disparities among the general public, key stakeholders, and health-care providers. The report provided specific recommendations for critical areas, including patient education and empowerment, cross-cultural education in health professions, legal, regulatory, and policy interventions, and health system interventions.

Communication between health-care provider and patient is vitally important to effective end-of-life care. A patient's understanding of his life-limiting illness will affect the course of his palliative care. Health-care professionals must be aware of subtle cultural variations in language, verbal and nonverbal communication, and expressions of distress (van Ryn & Burke, 2000). They must be able to comprehend the effects of ethnicity and spiritual beliefs on the daily lives of patients and families.

Culture influences what is considered a health problem, how symptoms are expressed and discussed, how health-care information is received, what type of care should be given, and how rights and protections are exercised (see Chapter 10 this book). In addition, health-care decision making is influenced by demographic factors, such as level of education, other socioeconomic status (SES) factors, geographic region (urban, rural), and time spent in the United States.

Kleinman (1988) proposed obtaining a patient's or caregiver's explanatory model of illness at any stage of the disease continuum by asking a series of questions designed to elicit their understanding of the situation (p. 42):

What do you call the problem?

What do you think caused the problem?

Why do you think it started when it did?

What do you think the sickness does? How does it work? How does it affect your body?

How severe is the sickness? Will it have a long or short course?

What care do you desire? What are the most important results you hope to get from your care?

What are the chief problems the sickness has caused?

What do you fear most about the sickness?

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 individual's culture, race, gender, sexual orientation, and SES while providing optimal end-of-life care. In 2001, the National Association of Social Workers (NASW) developed Standards for Cultural Competence in Social Work Practice. NASW defines cultural competence as

the process by which individuals and systems respond respectfully and effectively to people of all cultures, languages, classes, races, ethnic backgrounds, religions, and other diversity factors in a manner that recognizes, affirms, and values the worth of individuals, families, and communities and protects and preserves the dignity of each. (p. 11)

The standards address these areas: ethics and values, self-awareness, cross-cultural knowledge, cross-cultural skills, service delivery, empowerment and advocacy, diverse workforce, professional education, language diversity, and cross-cultural leadership.

ADVANCE DIRECTIVES

Advance directives are written documents completed by an individual that specify treatment preferences for health-care decision making, particularly about end-of-life care and whether to use life-sustaining treatment. They provide an avenue for individuals to make known their wishes about end-of-life treatment. The most common advance directives are the health-care proxy (durable power of attorney for health care) and living will.

The Patient Self-Determination Act has done much to increase the use and awareness of advance directives. It was signed into law in November 1990 and became effective in December 1991 (Federal Register, 1991). The act is applicable in all 50 states. The law requires that all facilities receiving Medicare or Medicaid reimbursements ask newly admitted patients if they have health-care directives in place, provide a written explanation of the state's law on health-care directives, and provide an explanation of the hospital's policies in enforcing them. Health-care facilities also are required to record patients’ health-care directives as part of their medical records. In addition, those facilities must educate staff and the community they serve about advance directives and ensure that patients are not discriminated against, whether they have an advance directive or not. Social workers can initiate direction and leadership in implementing this education.

A durable power of attorney for health care involves the legal appointment of an individual to speak for a person should that person become decisionally incapacitated. Multiple types of durable power of attorney are available, covering business, financial, or health-care decisions. The purpose of legally appointing a person as a health-care proxy is to ensure that an individual's wishes are followed in the event she is not able to make her own decisions. The person appointed as proxy acts to ensure that health-care providers know of those wishes and can advocate for their enforcement. The person named as an individual's health-care proxy should be someone the individual trusts and someone with whom she feels comfortable in discussing her wishes. The person appointed to oversee an individual's health-care wishes could be a spouse or partner, relative, or close friend. An individual serving as a proxy should be aware of state regulations or variations regarding advance directives. In addition, that person must be aware that he or she may have to fight to assert the patient's wishes in the event of a disagreement with the health-care team or with other family members.

A living will is a directive to a physician and health-care team that states a person's wishes about what life-prolonging treatment should be provided or withheld should he or she lose the ability to communicate those wishes. Life-prolonging therapies include mechanical ventilation, blood transfusions, dialysis, antibiotics, and artificially provided nutrition and hydration. A living will should be viewed as a way to guide a physician to provide medically appropriate care in keeping with the patient's wishes.

Any adult with decision-making capacity can complete an advance directive. Directives must be completed by the individual to whom the directive applies (i.e., a relative cannot complete an advance directive for the patient even though he or she may be the health-care proxy). Advance directives can be rescinded at any time for any reason. They should be properly signed and witnessed, but a lawyer is not required to complete or rescind a valid advance directive. The patient should retain copies of the directive and also provide copies to the designated proxy and to appropriate health-care providers. Advance directives are used more frequently by White, middle to upper SES individuals than by individuals from lower SES or ethnic or racial minorities. Social workers may need to be proactive in educating disadvantaged persons about the value of advance directives and help them with end-of-life care planning. Research suggests that many ethnic or racial minority groups in the United States fear being denied beneficial treatment at the end of life more than they fear receiving excessive therapy and therefore are less likely to complete an advance directive (Crawley, Marshall, Lo, & Koenig, 2002).

Social workers should discuss advance directives with each of their patients. They can help educate patients and families on the uses and benefits of advance directives and advocate for their choices. They can help patients complete an appointment of a health-care agent and a living will; ensure that this information is recorded in the patient's medical record; encourage the patient to inform the designated proxy of his wishes; and, if requested, help the patient discuss his wishes for end-of-life care with the designated proxy. A Consumer's Tool Kit for Health Care Advance Planning is available for downloading at the American Bar Association Web site (www.americanbar.org/groups/law_aging/resources/consumer_s_toolkit_for_health_care_advance_planning.html). Advance directives for each state and information about advance care planning also are available from the National Hospice and Palliative Care's Caring Connections Web site (www.caringinfo.org/i4a/pages/index.cfm?pageid=1).

UNDERSTANDING LOSS

Individuals and families facing end-of-life issues experience many kinds of loss besides impending death, including multiple losses (outlined next) as the person becomes more ill and withdrawn from prior life and activities. 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 often is 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 (including through abortion, miscarriage, or stillbirth), and other relatives. However, loss also can occur through:

Separation or divorce

Temporary or permanent placement in a nursing home, hospital, hospice facility, adoptive or foster home, or prison

Geographic moves due to job relocation or assignment in the military

Death of a pet

Death of a close friend, coworker, business associate, colleague, or acquaintance

Deaths of well-known personalities or celebrities (e.g., President John Kennedy, Princess Diana)

For the person who is dying, the end of life also brings the loss of part of the self, which includes physical, psychological, and social losses. Physical loss is the loss of body parts (e.g., amputations) and loss of functioning (e.g., lack of mobility, impaired bladder or bowel control, reduced sexual functioning). Psychological loss is also relevant for patients at the end of life and can include the loss of independence, dignity, self-esteem or self-concept, memory or mental acuity, and opportunity, goals, hopes, and dreams. Social loss includes loss of work or income and loss of social roles (i.e., role of partner/spouse or parent).

Each loss in a person's life is experienced uniquely because it is influenced by multiple factors, that is, characteristics of the individual, the nature of the relationship with the deceased person, how the loss occurred, and influences from the past.

Controversy has surrounded the concept of “stages” of loss, in part because it implies a linear movement through a grief process. More recent thinking discounts the notion that there is a homogeneous course through which everyone moves due to grief. Grief is a natural response to loss. It is not merely sadness or crying in response to a loss.

Different conceptual frameworks exist to explain the experience of grief. Rando (1984) conceptualized grief within three broad categories: avoidance, confrontation, and reestablishment. Avoidance includes “shock, denial, disbelief, emotional anesthesia, confusion, numbness, disorganization, and the intellectualized acceptance of the death.” Confrontation is a “highly emotional state wherein the grief is most intense and the psychological reactions to loss are felt most acutely.” Reestablishment is the “gradual decline of the grief and marks the beginning of an emotional and social reentry back into the everyday world” (pp. 28–29). The tasks of the griever are then to:

Acknowledge, accept, and understand the reality of the loss.

Experience the pain of the grief and react to the separation from that which was lost.

Adapt to a new way of life.

Reinvest in a new way of life.

There may be ambivalence about the appropriateness of expressing so many emotions and resistance to revealing those emotions to others. Grievers may feel overwhelmed by the intensity of their emotions and exhausted by the process. They may avoid or repress thoughts, feelings, or memories associated with the deceased person. They may protest or feel denial about the death or have feelings of unreality or depersonalization.

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 (i.e., depression); and any physical health problems, life crises, or life changes prior to the current loss. The relationship with the deceased person also plays a role in coping with the loss: the relationship (partner/spouse, child, parent), length of the relationship, role the deceased person occupied, strength of the attachment, and degree of dependency.

In addition, it is important to consider how the loss occurred. The circumstances surrounding the loss, preparation for bereavement (anticipatory grief), the griever's perception of preventability, perception of the deceased person's fulfillment in life, and any unfinished business that was present in the relationship with the deceased person all play a role in the grief process. These factors make grief a very personal and individual experience.

Grief counseling involves normalizing the grieving person's feelings and behavior and helping the griever identify and express her feelings, actualize the loss, facilitate her ability to live without the deceased person and to reengage with life, and provide continuing support throughout the process. Social workers should be alert to symptoms of complicated or troubled grief while providing counseling to help patients and families normalize their often-difficult responses to grief. Uncomplicated grief is a grief reaction that, although painful, moves the survivor closer to acceptance of the loss and enhances the ability to carry on with life. In contrast, complicated grief is a grief reaction that includes difficulty acknowledging the death, intrusive thoughts about and yearning for the deceased person, and feelings of futility and purposelessness about the future.

ANTICIPATORY MOURNING

Grieving that begins before a death occurs is known as anticipatory mourning; the physical and emotional reactions involved are often the same as those experienced in normal grieving. Rando (2000) defined anticipatory mourning as

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. (p. 51)

Involving the whole family, as defined by the patient, in his care and treatment can decrease anxiety and allow for a sense of control, participation, and support. Meeting with the entire family as a group and establishing a personal relationship with each family member (if possible) is crucial. Within their ability, social workers can help families to express their anticipatory grief appropriately and develop or maintain open communication. Equally important is advising the family about the practical realities of illness and the death. Dying patients may be very concerned about these practical matters and do not want to burden their loved ones. Social workers can help patients and families plan for future care needs as well as preferences for burial and associated financial arrangements. These advance directives help people who are at the end of life feel some control and ensure that their wishes are honored.

COMPLICATED GRIEF

It is sometimes difficult to differentiate uncomplicated from complicated grief. Worden (2008) outlined four complicated grief reactions:

Chronic grief is grief that is prolonged, is excessive in duration, and never comes to a satisfactory conclusion.

Delayed grief is emotion 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 these are related to a loss.

One social work task is to recognize symptoms or responses that may indicate complicated grief, including an excessive degree of guilt, remorse, self-blame, a delay of up to six months in beginning the grief process, a prolonged grief process, hostility against the deceased person's caregivers, avoidance of the loss through overactivity, avoidance of emotional expression, severe depression or insomnia, or self-destructive behaviors (Worden, 2008).

DISENFRANCHISED GRIEF

Doka (2002) defined disenfranchised grief as the grief experienced in connection with a loss that is not socially acknowledged, publicly shared, or supported through usual rituals. Either the significance of the loss is not recognized or the relationship between the deceased person and the bereaved survivor is not socially sanctioned–the person suffering the loss is given little or no opportunity to mourn publicly. It is experienced when the relationship is not recognized (lovers, ex-spouses, same-sex partners, close friends), when the loss itself is not recognized (stillbirth, miscarriage, abortion, adoption, pet loss), or when the griever is not recognized (very young, very old, with developmental disabilities). The manner of death itself can be disenfranchising (murder, suicide, acquired immunodeficiency syndrome). When such deaths are treated as less than significant losses, the process of grieving becomes more difficult. Social workers who become close to patients who die also can be disenfranchised mourners. Their own grief experiences should be acknowledged and dealt with. Often social workers in the same area form support groups or hold brief ceremonies to recognize all of their patients who have died in a period of time.

SOCIAL WORK IN END-OF-LIFE CARE

Reese and Raymer (2004) provided evidence that social work involvement in hospice operations correlates significantly with reduced patient care costs. Their survey about social work involvement impacting hospice outcomes included social workers and hospice directors in 66 randomly selected hospices across the United States who completed questionnaires and reviewed 330 patient charts. The survey clearly indicated consistent benefits of social work involvement in all aspects of hospice care, to the patients and families as well as to the hospice administration itself. The qualifications of the social work staff and hospice staffing and budget policies were also important variables. Better outcomes were correlated with more experienced social workers, higher social work salaries, and higher social work staffing ratios. The authors recommended that social work participation take place from intake and assessment through continuing care to prevent crises, reduce the severity of anticipated problems, promote effective pain and symptom management, provide expert psychosocial interventions, and maximize the opportunities for patients and families to maintain a good quality of life at the end of life.

The Open Society Institute's Project on Death in America (PDIA) began the Social Work Leadership Development Awards Program to identify and support outstanding social work faculty and clinicians committed to improving the care of dying and bereaved people. The program promoted innovative research and training projects that reflected collaborations between schools of social work and practice sites that would advance the ongoing development of social work practice, education, and training in the care of the dying. These awards promoted the visibility and prestige of social workers committed to end-of-life care and enhanced their effectiveness as academic leaders, role models, and mentors for future generations of social workers. Between 2000 and 2004, 42 social workers were given the award. (For a list of PDIA social workers, please visit www.soros.org/resources/articles_publications/publications/pdia_20040101/pdia_20040101.pdf.)

The first Social Work Summit on End-of-Life and Palliative Care took place in March 2002. Social work and end-of-life care experts met for a three-day summit to design a social work agenda to improve care for the dying and their families. The agenda called for organized professional leadership, standards of practice, and increased preparation at all levels of social work education. Leaders from national social work organizations, social work schools, hospices, hospitals, government agencies, and end-of-life care advocacy groups attended the meeting, representing more than 30 organizations. The summit was cosponsored by Last Acts, the Duke Institute on Care at the End of Life, and the Soros Foundation's Project on Death in America. The second Social Work Summit on End-of-Life and Palliative Care was held in June 2005; participants to this day continue their work through various projects and through many organizations.

As an outgrowth of the Social Work Summits, the National Association of Social Workers (NASW) began an initiative in 2003 to increase social workers’ 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. NASW received a grant from the Project on Death in America to develop practice standards on palliative care, end-of-life care, and grief work to provide social workers with guidance for ethical and effective practice (NASW, 2004) and to develop both a comprehensive policy statement on and a Web-based course on the standards with pre- and posttesting to document knowledge gains. This initiative complements other NASW policy statements on client self-determination in end-of-life decisions, health care, hospice care, long-term care, and managed care.

Recent significant efforts have been initiated to provide more formal transdisciplinary palliative care education to social workers and other professionals. The most notable of these was the Advocating for Clinical Excellence (ACE) project, a five-year National Cancer Institute–funded project held at the City of Hope National Medical Center, Duarte, California, and directed by principal investigator Shirley Otis-Green and coinvestigators Betty Ferrell and Marcia Grant. The objective of the ACE project was to improve the delivery of palliative care through an intensive advocacy and leadership training program for 300 competitively selected psycho-oncology professionals (i.e., social workers, psychologists, spiritual care professionals). The program sought to address the deficits in the delivery of quality palliative care and to provide the participants with strategies to empower them to become more effective role models and advocates for enhanced palliative, end-of-life, and bereavement care in their institutions and disciplines. More information about the program is available at www.cityofhope.org/education/health-professional-education/nursing-education/ace-project/Pages/default.aspx

COMPASSION FATIGUE

Social workers and other health-care professionals who work in end-of-life care experience a great deal of trauma of illness and death. Those who work in end-of-life care can experience short- and long-term effects that can be profoundly disruptive, both professionally and personally. Social workers develop and nurture a therapeutic alliance with patients and families; in that process, they can be seriously affected as a result of listening to stories of suffering and pain. Compassion fatigue, also referred to as secondary trauma, is the natural, predictable, treatable, and preventable stress resulting from helping a traumatized or suffering person (Figley, 1994).

Some professionals may be more vulnerable than others to compassion fatigue due to, for example, multiple losses, unresolved personal trauma, or insufficient recovery time. Social workers also grieve and need support. Each social worker has her own professional style and ways of coping that may mask symptoms and interfere with coping. All social workers need effective self-care strategies and stress management techniques to treat the symptoms of compassion fatigue. Strategies to prevent or cope with compassion fatigue include supervision, personal psychotherapy, grief support for staff, stress management, and maintaining a balance between personal and professional responsibilities (Katz & Johnson, 2006).

CONCLUSION

Many issues in end-of-life care are beyond the scope of this chapter: for example, pain management in palliative care and ethical issues, such as medical futility, withholding or withdrawing medical therapy, assisted suicide, euthanasia, and terminal sedation (for more details, see Chapters 3 and 22). It is difficult for social workers and health-care professionals to use their considerable skills in situations that ultimately will not change the final outcome of a life-limiting illness. Experience tells us that as patients and families approach the end of life, social workers often feel they no longer have a role to play. They may want to withdraw from the patient and family. One of the hardest tasks is to be emotionally present during moments when further curative medical treatment is not possible. Often all patients and families need is to have a social worker be a physical and emotional witness to their suffering. Accepting the limits of what we are able to do and sitting with a patient and family who are trying to cope with the end of life can be an important and meaningful experience, for the patient and family as well as the social worker. Cultivating the ability to be present in the moment with patients and families and be a witness to their personal struggles at the end of life is one of the most difficult but important and rewarding skills a social worker can possess. Providing psychosocial support, teaching coping and communication skills, providing information and advocacy, collaborating with colleagues, and taking a leadership role within the transdisciplinary health-care team can equip a social worker to make a significant difference in the experiences of the end of life for patients and families.