Hospice Social Work

Dona Reese

• Publisher: Columbia University Press
• Year: 2013
• ISBN:
  9780231508735
• Topic: Social Sciences
• Subtopic: Social Work
• Index: Social Sciences

The first text to explore the history, characteristics, and challenges of hospice social work, this volume weaves leading research into an underlying framework for practice and care. A longtime practitioner, Dona J. Reese describes the hospice social work role in assessment and intervention with individuals, families, groups, organizations, and the community, while honestly confronting the personal and professional difficulties of such life-changing work. She introduces a well-tested model of psychosocial and spiritual variables that predict hospice client outcomes, and she advances a social work assessment tool to document their occurrence. Operating at the center of national leaders' coordinated efforts to develop and advance professional organizations and guidelines for end-of-life care, Reese reaches out with support and practice information, helping social workers understand their significance in treating the whole person, contributing to the cultural competence of hospice settings, and claiming a definitive place within the hospice team.

1

END-OF-LIFE CARE IN THE UNITED STATES

This chapter discusses the history of our approach to death and dying in the United States of America. We will discuss the trend toward life-sustaining treatment in the U.S., then the development in the 1970s of the hospice philosophy, which encouraged palliative rather than curative care in terminal illness. We will discuss implications for health care costs, Medicare and Medicaid coverage of hospice, with resulting advantages and disadvantages in policy issues and barriers for utilization, including by some ethnic and racial communities. We will discuss the development of the field of palliative care and ethical issues surrounding passive and active euthanasia or physician-assisted suicide. We will discuss advance directives as a way to clarify patient wishes and uphold patient self-determination. We will conclude with a discussion of policy that covers some recommendations for policy change in the field of hospice and end-of-life care.

FROM DYING AT HOME TO DYING IN THE HOSPITAL

During the first half of the twentieth century in the United States, people typically died at home, cared for by family members. The death of loved ones was a familiar experience, not one to be kept out of sight and awareness. Death was expected as a natural part of life, and religious beliefs about the nature of the afterlife helped many cope with their own deaths or those of loved ones. End-of-life care decisions were made by physicians who had a long-standing and close relationship with their patients (Harper 2011).

Medical advances in the second half of the century, however, made us think life could be prolonged indefinitely. The major infectious diseases could be controlled through medication, and surgical techniques were developed to control other life-threatening illnesses. Patients whose hearts stopped beating could be resuscitated. The well-loved family doctor gave way to doctors unknown to the patient providing aggressive end-of-life care in the hospital (Reith and Payne 2009; Silverman 2004).

The result of these advances was to increase the lifespan from forty-seven years in 1900 to seventy-four years for men and seventy-nine for women in 2004 (Social Security Online 2004). Religious beliefs gave way within the dominant cultural group to the belief that doctors held the key to life and death. At the same time, families felt morally obligated to access all available medical treatments, regardless of the likelihood of effectiveness (Blacker 2004; Buckey and Abell 2010; Forbes, Bern-Klug, and Gessert 2000) and regardless of the cost (Arons 2004).

Thus, today, only 38 percent of deaths occur in hospice (Jennings et al. 2003), with many others occurring in hospitals and nursing homes rather than at home (Quality of Life Matters 2004; Silverman 2004), and with the patient surrounded by technology instead of by loved ones. Regardless of the likelihood that patients will recover from life-threatening conditions, physicians attempt to save and prolong their lives through full use of technology or life-sustaining treatment. Even with a terminal prognosis (a prediction that the patient will not recover from the illness, but will die from it within six months), they often do not provide palliative care (treatment with the goal of comfort and control of symptoms rather than cure) until death is imminent (Blacker 2004; Silverman 2004).

QUALITY OF LIFE IN END-OF-LIFE CARE

This prolonged life has not necessarily been experienced as a good quality of life, however, but has resulted in increased numbers of people living in a serious, debilitated state. Many of these are without adequate pain control, wish for but do not receive physician contact, and do not receive adequate emotional support (Peres 2011; Silverman 2004). In addition, patients may be treated with a lack of respect (Quality of Life Matters 2004). Loss of dignity during the dying process has been linked with psychological and symptom distress, heightened dependency needs, and loss of the will to live (Chochinov et al. 2002).

Patients who are resuscitated may have to live on life support, including ventilators to allow them to breathe and artificial nutrition and hydration to allow them to gain nourishment. The continued life may be spent undergoing surgery and painful treatments that have little chance of improving the patient’s condition. At the same time, patients who do not improve may be regarded as failures and avoided by health care professionals (Silverman 2004). In addition, physicians may fail to inform patients of their prognosis and all options for curative and palliative care (Arons 2004). Without knowledge of one’s prognosis and treatment options, a patient is unable to exercise informed consent. This in turn compromises patient self-determination. For these reasons, a number of authors consider end-of-life care in the U.S. today to be inadequate (Kramer, Hovland-Scafe, and Pacourek 2003).

Health care costs have also been a major social problem in the U.S. for decades. The next section will focus on the implications of end-of-life care for the cost of health care in America.

IMPLICATIONS FOR HEALTH CARE COSTS

Costs of this futile treatment have detrimental affects on individuals, families, and our nation (Baily 2011). During the dying process, many families lose most or all of their savings (Reith and Payne 2009). One-third of all health care dollars in the United States are spent on medical care in the last two years of life (Goldberg and Scharlin 2011). Skyrocketing costs have made it difficult for U.S. companies to compete on the world market, due to translation of employee health insurance expenses into product prices. The impact on our nation has led some authors to argue that patient self-determination, in terms of choosing the option of curative care, is overemphasized to the detriment of the common good (Baily 2011). Managed care health insurance companies have changed the face of medicine when physicians could not, increasingly refusing to cover “futile care.” The next section discusses an alternative perspective, the hospice philosophy.

RISE OF THE HOSPICE MOVEMENT

DEVELOPMENT OF THE HOSPICE PHILOSOPHY

A movement founded in the 1960s in England by Dame Cicely Saunders, and continuing in the 1970s in the United States through the work of Elisabeth Kubler-Ross, began to advance a new set of values. Saunders founded St. Christopher’s Hospice in London in 1967 (www.stchristophers.org.uk). Trained as a social worker, nurse, and physician, she promoted a holistic model of care provided by an interdisciplinary team.

This treatment was focused not on curative treatment, with the goal of curing the patient’s disease, but on palliative care, aimed at promoting quality of life during death and dying: “You matter to the last moment of your life, and we will do all we can, not only to help you die peacefully, but to live until you die” (Dame Cicely Saunders, quoted by AScribe Newswire 2005). The focus was on palliative care, the treatment of symptoms rather than the disease.

Death with dignity and patient self-determination are cornerstones of this new perspective. In the face of terminal illness, the patient chooses comfort rather than cure, palliative care or palliation of symptoms rather than curative care aimed at eradication of the disease. The goal is to focus on enjoying one’s remaining days and to make legal, emotional, and spiritual preparations for death. Death is accepted as a natural part of life. In the U.S., hospice philosophy is oriented toward death in the home, surrounded by loved ones and an environment arranged according to the patient’s wishes. The interdisciplinary hospice team provides holistic care that addresses the physical, psychological, social, and spiritual needs of the patient and significant others (Black 2007). The focus is on advocating for the patient’s individual preferences, despite family or physician opinions to the contrary. The patient has rights to information about her prognosis and to make decisions about end-of-life care based on this information. Until her death at St. Christopher’s Hospice in 2005, Saunders promoted these values, which came to be known as the hospice philosophy, a new perspective that led to significant changes in end-of-life care around the world.

DEFINITIONS The National Association of Social Workers (NASW 2011) has provided some definitions that are helpful in distinguishing between several types of care in terminal illness. End-of-life care is defined by NASW as “multidimensional assessment and interventions provided to assist individuals and their families as they approach end of life” (p. 4). End-of-life care decisions vary greatly and can include curative care or palliative care, with or without advance directives. Decisions may be made by patients or left to family members and are influenced by psychosocial, spiritual, and cultural factors. End-of-life care may include hospice or palliative care.

Palliative care is defined by NASW (2011) 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 and Payne 2009).

DEVELOPMENT OF HOSPICE IN THE UNITED STATES

Shortly after the founding of St. Christopher’s, Elisabeth Kubler-Ross, a physician critical of the inhumane treatment of dying patients, became a leader of the hospice movement in the U.S. Her groundbreaking book, On Death and Dying (1970), became a best seller and influenced public opinion in the U.S. and globally.

The first U.S. hospice was established in 1971, in Branford, Connecticut, by a team from Yale University consisting of a nurse, two pediatricians, and a chaplain. In 1972 Kubler-Ross testified in front of the Senate, the first of a series of efforts to promote the hospice concept.

Also in 1972, the American Hospital Association developed the “Patient Bill of Rights.” This statement provided for the patient’s right to make choices relating to types of treatment received, including the right to refuse treatment, to refuse life-sustaining measures, and to terminate treatment. It also provided for the patient’s right to all comfort measures. Finally, the patient had the right to know the truth of his condition.

Because of this model, hospice proponents were able to show that home care was less expensive than institutional care, leading to Medicare reimbursement for hospice under the Tax Equity and Fiscal Responsibility Act in 1982 (Harper 2011). Medicare coverage has had a major influence on the care of the dying, as 85 percent of people who die in the U.S. each year are covered by Medicare (Werth and Blevins 2002).

The Medicare Hospice Benefit transformed hospice philosophy into federal regulation, requiring an interdisciplinary approach that includes physician, nursing, home health aide, social work, and spiritual care. The benefit covers prescription medication, medical supplies and equipment, short-term care in an inpatient setting (e.g., for pain and symptom control or caregiver respite), and bereavement counseling for significant others after the patient’s death. For each day the patient is enrolled under the Medicare Hospice Benefit, the hospice receives a per diem amount.

In order to receive the benefit, a patient has to be terminally ill, with a physician certifying a prognosis of six months or less. A patient can cancel enrollment in hospice any time and then reenter if she still has a six-month prognosis. A patient can remain in hospice longer than six months if the certifying physician still believes that she has a prognosis of less than six months. Any diagnosis is eligible, although cancer has been the primary diagnosis of patients served, due to the greater ability to predict the course of illness of a cancer diagnosis.

The focus of the Medicare Hospice Benefit was to save money, and thus eligibility limitations are imposed. While enrolled in hospice, the patient must agree to forego curative or life-sustaining treatments and be cared for at home by a significant other.

In 1986 states were given the option to include a hospice benefit within Medicaid programs. Thus hospice care was now available for nursing home residents. This had a major impact, since 35 percent of older adults use nursing home care in the last year of life (Werth and Blevins 2002). Medicaid provides health and long-term care to individuals with low incomes (including those who have been impoverished by health care costs). Not all states cover hospice under Medicaid though. In 1995 the military began to offer hospice benefits to family members.

The hospice movement has continued to grow, with the National Hospice and Palliative Care Organization (NHPCO) reporting a yearly increase in the number of operating hospices nationwide. In 2008 there were more than 4,850 hospices in the U.S. that served 1.45 million people. It is estimated that 38.5 percent of deaths occur within hospice care (NHPCO 2009). The next section will discuss standards for end-of-life care.

PROFESSIONAL STANDARDS FOR END-OF-LIFE MEDICAL CARE

Care that addresses quality of life is now increasingly recognized as an ethical obligation of health care providers, and several expert-developed descriptions of such care exist. In 2001 the Institute of Medicine described quality end-of-life care in terms that reflected the hospice philosophy. These parameters for a good death include a death that is free from avoidable distress and suffering for patients, families, and caregivers, in general accord with patients’ and families’ wishes and reasonably consistent with clinical, cultural, and ethical standards (Roff 2001). Similarly, in 2003 Robert Wood Johnson developed quality indicators for end-of-life care that reflected a hospice perspective, including emotional, spiritual, and practical support and adequate symptom control.

Singer and colleagues (Singer, Martin, and Kelner 1999) have also contributed in this area by developing a framework based on the perspectives of patients and families. They have identified five domains important to “quality end-of-life care”: receiving adequate pain and symptom management, avoiding inappropriate prolongation of dying, achieving a sense of control, relieving burden, and strengthening relationships with loved ones. Farber, Egnew, and Farber (2004) add to this discussion the alternative term respectful death, in which a caregiver’s perception of what constitutes a “good death” is not imposed upon the patient, but rather the patient’s agenda and individual experience is respected. This perspective on care is reflected in the hospice model of care, discussed in the following section.

HOSPICE MODEL OF CARE

Patients are admitted to a hospice program when medical science can offer no cure to them and, in all likelihood, they are expected to die within six months. The patient is aware of the prognosis at admission and agrees to a program of palliative care aimed toward comfort rather than cure. The goal of pa...