Abstract and Keywords
Hospice social workers are essential members of the interdisciplinary team that provide biopsychosocial and spiritual care to terminally ill patients and their significant others during the last 6 months of life. Hospice philosophy emphasizes symptom control, quality of life, patient self-determination, and death with dignity. Hospice social workers must be skilled in providing evidence-based interventions including direct client services; collaboration with the interdisciplinary team; community outreach; developing culturally competent services; and advocating for policy change on the organizational, local, and national levels.
The word hospice is from the Latin “hospitium,” meaning guesthouse. It was originally used to describe places of respite for travelers on religious pilgrimages and later transformed to a concept of holistic care specifically designed for the terminally ill and their families. Britain’s Dame Cicely Saunders, an English social worker, nurse, and physician, is credited worldwide as the founder of the modern-day hospice movement. She considered her social work training key in shaping crucial factors embodied in hospice care such as the need for interdisciplinary care, empowerment of the patient and family or significant others, aggressive symptom management, and a focus on psychosocial and spiritual issues (Corless & Foster, 1999).
By contrast, hospice care in America grew out of a more grassroots community movement and its original emphasis was more on care “in the home.” Saunders was invited to Yale University in 1965 where she lectured on the concept of hospice care. Then dean of the Yale School of Nursing, Florence Wald, took a sabbatical to work at St. Christopher’s. She returned to develop the first American hospice in Branford, Connecticut, in 1974. From this point on, American hospices grew and took various forms according to the community in which they originated. They were initially supported and staffed mainly through volunteer efforts, donations, and grants. Core services included social work, physicians, nursing, home health aides, volunteers, and chaplains. Approximately a decade later, health-care and governmental planners officially recognized hospice care for both financial and quality of life benefits by introducing the hospice benefit in 1983. Programs began to proliferate in a social climate that was challenging the traditional power structure. More and more health-care professionals, teamed with other community members, were disenchanted with a health-care system that focused almost exclusively on technology and cure, while many terminally ill individuals were viewed as “failures” and consequently “abandoned” because there was a belief that nothing more could be done. Hospice, with its focus on aggressive palliative care, focused on treating symptoms rather than curing the disease and emphasized quality of life rather than quantity of life.
Social work values were inherent in hospice from the start. Self-determination, dignity, the patient and family as the unit of care, service, and social justice are core values embraced by both hospice philosophy and the social work profession.
Hospice is a form of palliative care, which was originally defined by the World Health Organization (2002) as “an approach that improves the quality of life of patients and their families facing the problems associated with life threatening illness, through the prevention and relief of suffering by means of early identification and assessment and treatment of pain and other problems, physical, psychosocial and spiritual.” Similarly, the National Association of Social Workers (NASW, 2011) defined palliative care as an approach that focuses on quality of life through prevention and relief of suffering on physical, psychosocial, and spiritual levels. Palliative care offers relief of symptoms when no cure is possible. It may be offered in chronic illness as well as in terminal illness. Hospice is a form of palliative care that is offered specifically in terminal illness (Reith & Payne, 2009).
While all hospice care is palliative care, not all palliative care is hospice. Hospice programs provide state-of-the-art palliative care and support services to individuals at the end of their lives and their family members and significant others, 24 hours a day, 7 days a week, in both home- and facility-based settings. A prognosis of approximately 6 months or less is the usual standard for hospice admission. Physical, social, spiritual, and emotional care is provided by a clinically directed interdisciplinary team consisting of professionals and volunteers during the last stages of an illness, as well as assistance with the bereavement period.
Hospice care neither hastens nor postpones death. It embraces the belief that through appropriate expert care, as well as the provision of a community sensitive to their needs, individuals and their families may be free to attain a degree of satisfaction and comfort in preparation for death. Hospice care also offers palliative care for all individuals and their families without regard to age, gender nationality, race, creed, sexual orientation, disability, diagnosis, availability of a primary caregiver, or ability to pay.
The Standards of Practice for Hospice Programs (National Hospice and Palliative Care Organization [NHPCO], 2010) are organized around the following components:
1. Patient and Family-Centered Care: Providing care and services that are responsive to the needs and exceed the expectations of those we serve.
2. Ethical Behavior and Consumer Rights: Upholding high standards of ethical conduct and advocating for the rights of patients and their family caregivers.
3. Clinical Excellence and Safety: Ensuring clinical excellence and promoting safety through standards of practice.
4. Inclusion and Access: Promoting inclusiveness in our community by ensuring that all people—regardless of race, ethnicity, color, religion, gender, disability, sexual orientation, age, disease, or other characteristics—have access to our programs and services.
5. Organizational Excellence: Building a culture of quality and accountability within our organization that values collaboration and communication and ensures ethical business practices.
6. Workforce Excellence: Fostering a collaborative, interdisciplinary environment that promotes inclusion, individual accountability and workforce excellence, through professional development, training, and support to all staff and volunteers.
7. Standards: Adopting the NHPCO Standards of Practice for Hospice Programs and/or the National Consensus Project’s Clinical Practice Guidelines for Quality Palliative Care as the foundation for our organization.
8. Compliance with Laws and Regulations: Ensuring compliance with applicable laws, regulations, and professional standards of practice, implementing systems and processes that prevent fraud and abuse.
9. Stewardship and Accountability: Developing a qualified and diverse governance structure and senior leadership who share the responsibilities of fiscal and managerial oversight.
10. Performance Management: Collecting, analyzing, and actively using performance measurement data to foster quality assessment and performance improvement in all areas of care and services.
As of 2011, 41.9% of all deaths in the United States occurred under the care of a hospice. Most hospice care was provided in the patient’s home (66.7%). There are over 5,000 hospice programs in America and 1.58 million patients were served nationwide, with 66.8% age 75 years or older and 15.9% falling between ages 65 and 74 years. Of those patients served, 77.3% were Caucasian, 8.9% African American, 11% multiracial, 5.7% Hispanic/Latino, 2.5% Asian/Pacific Islanders, and 0.3% American Indian or Alaskan Native. Financially, 83.8% were covered by the Medicare Hospice Benefit, 4.9% by the Medicaid Hospice Benefit, 7.9% by private insurance, 1.1% were self-pay, and 2.3% were charity or other care. Cancer patients still make up the largest majority of people served with 35.6% of patients. Other diagnoses included end-stage heart disease, dementia, lung disease, stroke or coma, non-ALS motor neuron, liver disease, HIV/AIDS, ALS, and end-stage kidney disease, among others.
The majority (58%) of hospices are for-profit, while 36% are not-for-profit and 6% are government run. Freestanding hospices make up the majority (58%), with 21.3% being hospital based, 19.2% home health based, and 1.4% nursing home based. A concern is that patients are being referred to hospice close to death—35.3% died or were discharged within 7 days, and 49.4% died or were discharged within 14 days. In NHPCO’s Family Evaluation of Hospice Care, 75.6% of individuals rated the hospice services as “excellent.” (NHPCO, 2012).
The Hospice Medicare benefit covers services related to the terminal illness including physician visits and services, nursing care, medical equipment, medical supplies, drugs for symptom control and pain relief, short-term in-patient and respite care, home health aide and homemaker services, physical and other therapies, social work services, and grief support and counseling. Most other insurance benefits are based on the Medicare benefit in terms of coverage.
Social Work Roles
Direct Hospice Practice
The role of the social worker in direct hospice practice is essential and reflects the holistic origins of hospice care. A cross-sectional national survey of 66 hospices found that increased social work involvement in hospice care was significantly associated with lower hospice costs; better team functioning; more patient and family issues being addressed; reduced levels of pain, medication, and other costs; fewer visits by other team members; and enhanced client satisfaction (Reese & Raymer, 2004). Social work intervention on the micro level includes the responsibility to
1. Assess, diagnose, screen, and document
2. Stimulate internal and psychosocial coping skills through the use of models shown to be effective
3. Provide crisis intervention
4. Provide specific symptom relief through nonpharmacological therapies such as cognitive behavioral interventions and expressive therapies
5. Enhance the responsiveness of the environment
6. Engage in evaluating one’s own practice
Families sometimes feel an obligation to provide curative care, and may suffer complicated grief when they honor the patient’s wishes for palliative care (Buckey & Abell, 2010). Hospice social workers focus on the influence of dying on family dynamics, maintenance of intimacy, understanding patients’ transpersonal experiences as death draws near, communication with the extended family, caregiver coping, and children’s grief. Special issues arise with culturally diverse and gay, lesbian, bisexual, and transgendered clients. Social workers must be aware of alternative family structures, working with those whom the patient considers to be family, whether biologically and legally related or not (Schriver, 2010).
Social workers engage in personal preparation to effectively address these issues with clients. This includes developing awareness of one’s own spiritual beliefs and end-of-life care preferences, addressing one’s own death anxiety, and engaging in personal grief work. Once engaged in practice, social workers must practice self-care to prevent compassion fatigue and related difficulties.
Working With an Interdisciplinary Team
Hospice social workers need skills in working across disciplinary boundaries to foster a high-functioning interdisciplinary team. Social workers engage in advocacy with the team, including promoting self-determination, advocating for the management of all symptoms including psychosocial and spiritual suffering, educating colleagues about social work perspectives including the strengths perspective, and raising awareness of cultural competence issues. Other aspects of social work intervention with the interdisciplinary team include providing staff support groups and facilitating communication between staff and clients.
Intervention With the Hospice Organization
Social workers are ideally suited to serve in administrative and leadership positions in hospice because of training in conflict management, communication skills, problem solving, and group facilitation. Trained also in cultural competence, social workers should provide leadership in the development of culturally and linguistically competent services in the hospice. They should also advocate for frequent and continuing social work intervention to prevent crisis, and participate in on-call duties to address crisis when it does arise.
Community Intervention and Advocacy
Most deaths in the United States do not occur in hospice. This may be because of a lack of awareness within the general public and the inaccurate belief on the part of both the public and medical professionals that hospice is only for the last few days of life. Barriers to access and use hospice care are especially marked for culturally diverse groups. Patients must be referred to hospice by a physician, but many patients do not have a physician because of a lack of health insurance coverage. Additionally, a history of oppression for some has created mistrust in the health-care system. Many diverse communities may prefer to “take care of their own” and may find hospice service and delivery culturally irrelevant. A number of models for culturally and linguistically competent hospice care have been developed, and social workers need to advocate for their use (Reese, 2012).
Social work is the discipline on the team that is trained in community intervention; thus social workers should take responsibility for community outreach to the community in general, as well as to culturally diverse community groups. They should provide leadership in developing a diverse staff and volunteer force, and in conducting needs assessments to identify diverse groups in the community that are not being served. They also should take leadership in providing public education about end-of-life care options including hospice. In addition, social workers should work toward hospice policy change at the local, state, and national levels. Essential policy arenas to be addressed include reimbursement and access, as well as quality of life and caregiver issues.
In the public policy arena, social work needs to take leadership positions in advocacy efforts surrounding access, caregiver issues, reimbursement issues, and quality of life issues. As hospice continues to define itself and evolve in America, social workers, by taking more leadership roles, will help lead the charge to improve the quality of care provided to patients and their families. Advocating for the management of all symptoms (physical, psychological, social, and spiritual) will continue to be a key role for social workers to ensure high-quality hospice care.
Evaluation of practice is important to provide the highest-quality social work services at the micro, mezzo, and macro levels. It is also key in the social work profession’s efforts to demonstrate its effectiveness. One quantitative measure that can be used for this purpose, based on social work research about the major psychosocial and spiritual variables that influence hospice outcomes, is the Social Work Assessment Tool (Reese et al., 2006).
Emerging Global Issues in End-of-Life Care
Western countries, including the United States, provide training and assistance to other countries to orient them to the hospice philosophy and to help them establish hospice programs. The need for compassionate care that attends to the biopsychosocial and spiritual needs of clients is great. The AIDS epidemic in Africa, for example, combined with the lack of available medications, creates a great need for care for the dying and their loved ones. A challenge in this international work has been to provide culturally sensitive models of hospice practice that do not violate cultural and religious beliefs of the people being served.
Since the advent of Medicare coverage of hospice care in 1983, hospices have been staffed by paid professionals rather than volunteers, yet Medicare reimbursement has never been adequate. Hospice directors have struggled with questions of which services to reduce to balance the budget. Social work services have been viewed by some directors as less important than physical care, resulting in a lessening of the original holistic model of care.
Increasing Numbers and Competency of Hospice Social Workers
Social work has always been a core service of hospice, but a study of social workers in practice revealed that only 31% of 391 respondents agreed that the end-of-life care learned in their social work program was adequate for practice immediately after graduation. Only 22% agreed that the preparation was adequate for subsequent positions in their social work careers (Csikai & Raymer, 2005).
A number of major efforts have greatly advanced the field of hospice social work. The Social Work Leadership Development Awards within the Project on Death in America (Christ & Sormanti, 1999) and the Hartford Foundation’s Geriatric Social Work Faculty Scholars Program has funded social work scholars and mentored their development into national leaders in aging and end-of-life care. The National Association of Social Workers published its Standards for Social Work Practice in Palliative Care and End of Life (NASW, 2011).
Other efforts in the field include the National Hospice Social Work Survey (Reese & Raymer, 2004), which documented the importance of social work services to hospice outcomes. Berzoff and Silverman (2004) also edited the first textbook on end-of-life care social work. In 2005, the Journal of Social Work in End-of-Life and Palliative Care published its first issue; this first and only journal in end-of-life care social work serves as an important forum for disseminating new knowledge created in the field. In 2011, a national study documented the effects of these efforts on the perspectives of hospice directors; directors recognized much more of the social work role in hospice than in the past (Reese, 2011).
The baby boom phenomenon and the shifting demographics will put a huge strain on health care organizations in America, including hospices. By the year 2030 approximately 70 million people will be over the age of 65. There will be more older people living longer with more chronic illnesses and multiple health conditions and fewer younger people to care for them. Medicare, a key payment stream for hospice, will be affected by fewer people paying in. As costs soar, there may be increased pressure to reduce psychosocial and spiritual services. Hospice will need to define itself by more than the Medicare benefit and will need to work with new partners and position itself to be a valuable resource to these partners and the community at large.
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