Social Work Roles and Opportunities in Advanced Directives and Health Care Decision-Making

INTRODUCTION

A recent study in the Annals of Internal Medicine (Hofmann et al., 1997) shows that most people still fail to communicate in advance to their families and health care providers their wishes about treatment if they are dying or no longer able to make health care decisions. This follows years of publicity about potential advantages of "living wills" and durable powers of attorney and passage of federal legislation requiring health care facilities to furnish information to patients about end-of-life directives.

In the 1997 study, researchers who interviewed 1,600 seriously ill patients at five hospitals across the country found that only 23 percent had discussed cardiopulmonary resuscitation (CPR), a common end-of-life procedure, with their doctors. Of those who had not talked with their doctors, 42 percent said they wanted to discuss the procedure. Failure to discuss and understand medical interventions can result in unwanted CPR, mechanical ventilation, or other procedures. Surveys indicate that only 10 percent to 25 percent of Americans have documented their end-of-life choices or selected a health care agent to make decisions on their behalf (U.S. General Accounting Office [GAO], 1995).

The unmistakable failure of elderly people and others to write advanced directives may mean that methods used in past years to promote them have been failures. Some experts in the field are rethinking how best to ensure that end-of-life preferences are known and acted on (GAO, 1995). The methods with the highest success rates in encouraging people to write advanced directives are those associated with social work practice: sensitive talks over time with the person, based on the person’s values and goals.

The national effort to promote advanced directives occurred in the 1970s and 1980s after the famous cases of two women, Karen Quinlan and Nancy Cruzan, who were kept alive for years in vegetative states against the wishes of their families. In years past, end-of-life decisions were made by physicians who knew the patient and the family. Today, the majority of people who die in hospitals are treated by physicians who do not know them. Once hospitalized, patients are often treated aggressively, regardless of prognosis, or quality of life and often out of fear of litigation (Safford & Krell, 1997). The changing doctor–patient relationship has been accompanied by advances in technology and increased longevity that have increased the numbers of people who are living in a serious, debilitated state. The President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research examined the issue and in 1983 supported the principle of shared decision making between patient and health care provider based on informed consent derived by sensitive professional communication with the patient.

In 1991 Congress passed the Patient Self-Determination Act (PSDA) which required all health facilities that receive federal funds to inform patients of their rights to accept or refuse treatment and to prepare advance directives. The purpose of the act was to educate health care professionals and consumers about consumer rights to:

• decide in advance what life-sustaining measures they wanted in the event of a terminal illness when they are no longer able to speak
• prepare a durable power of attorney for health care (DPAHC), which allows a trusted family member or friend to act as their proxy in making health care decisions.

These advanced directives received broad publicity. Various types of information and help were offered by newspapers, magazines, health organizations, unions, senior citizen centers, lawyers, and civic organizations. The response was minimal. For example, the Department of Veterans Affairs developed a number of materials for veterans and their families and did extensive training for professionals; however, relatively few signed advanced directives.

One reason for the minimal acceptance of advanced directives is that patients generally are given information about their rights when they enter hospitals and nursing homes because of illness or cognitive impairment, and they and their families are overwhelmed. This is a poor time to consider end-of-life decisions or to choose health care surrogates. These are decisions that require reflection and in-depth discussion about patient values and quality of life. Ideally this process should be completed long before a person is near death, medically compromised, or unable to express choices.

Many experts believe that to improve completion rates, patients need to discuss advance directives with their doctors or health care agents (GAO, 1995). Yet a 1991 study indicated that one of the greatest barriers to advance directive completion was that patients waited for their doctors to bring up the subject (Emanual, Barry, & Stoeckle, 1991). Other studies show that some patients may not want to bring up the subject because they do not have personal relationships with their doctors or think it will present the doctor with a conflict of interest (Evans & Clarke, 1992). Many health care providers assume patients will bring up the subject.

Physicians are reluctant to discuss advance directives because they lack the necessary knowledge or training to do so, think they are unnecessary for young people, do not get paid for the time they spend discussing the topic, or do not feel death is an appropriate professional outcome (GAO, 1995). Discussing death and dying is generally difficult for most physicians. The increased ethnic and cultural diversity of the population present additional barriers to physician communication regarding advanced directives. As the GAO (1995) noted: "Lack of communication between patients and physicians and misunderstandings about the appropriateness and purpose of advance directives may explain why completion rates remain low" (p. 2).

Many problems and uncertainties arise when there are no advance directives. Studies have shown that neither family members nor physicians can accurately guess end-of-life preferences (Suhl, Simons, & Reedy, 1994). It is not unusual for family members to get into heated arguments about their wishes or whether they believe the person with the terminal illness would continue or discontinue treatment if he or she could speak (Safford & Krell, 1997). Guilt, confusion, and intended or unintended abuse can result from ineffective communication about health care decisions. The growing numbers of elderly people in our population increase the chances for these problems to occur in the coming years.

With physicians, admissions representatives, and many other health care workers lacking the training, time, or desire to promote advanced directives, social workers, who have the education and training, should become central to this process. Where physicians are taught to look at people from the standpoint of medical problems to be solved, social workers are educated to look at the entire person—biopsychosocial and spiritual. Social workers are accustomed to working with people whose cultural and ethnic backgrounds might make them hesitant to write advanced directives. Also of importance is that social workers have the tools and training to deal with people who have difficulty expressing their emotions, and with families in distress. Social workers with health care experience understand both the medical terminology and how to explain it to clients. In one study patients in a geriatric outpatient clinic were offered information and counseling over several months by an interdisciplinary team of a social worker, physician, and other professionals. This allowed sufficient time for understanding of the forms and for trust to develop. As a result, 71 percent signed advanced directives (Luptak & Boult, 1994). Others have developed questionnaires about people’s deeply held beliefs and values that are then discussed and used as a basis for writing advanced directives (Doukas & McCullough, 1991; Gibson, 1990). Processes like these suggest there should be a large role for social workers in the steps that lead people, especially elderly and seriously ill individuals, to make end-of-life choices in advance. Anticipating all medical contingencies is a daunting, perhaps impossible, task. For that reason, some ethicists focus on the importance of discussing values rather than specific instructions (GAO, 1995).

Social workers in all areas of practice can be proactive with their adult clients and the general population to promote the concept of advance directives. If they do, assistance with advance directives can become strongly associated with social work practice.

The social work role as part of health care teams in hospitals, nursing homes, and primary care should extend to educating both health care professionals and patients about advanced directives. Social work skills in family dynamics should be used to provide information and broach the issue of advanced directives and DPAHCs with people of all ages in a variety of settings, including family practice and work in mental health, developmental disabilities, adult protective services, HIV/AIDS, employee assistance programs, substance abuse, rehabilitation, as well as geriatric case management.

Social workers understand that advanced directives are a psychosocial decision, a right of self-determination as much as a medical choice. Some attorneys who work in estate planning contract with social workers to assist clients in making these choices. Social workers who are in geriatric practice and health care or are consultants need to reach out to the legal and financial communities to offer needed services in these areas. In addition, there are numerous opportunities for social workers to reach out to the public and to enhance the social work role in promoting advanced directives. Among them are the following:

• one-to-one with adult clients—for themselves and their adult parents
• at senior center informational or support programs
• with adult day care center staff and clients and their families
• at assisted living facilities, retirement communities, and group home services
• with consumer groups and social organizations
• at work sites or through employee assistance programs (EAPs)
• by consulting with various health care provider organizations and managed care companies.

REFERENCES

Doukas, D., & McCullough, L. (1991). The values history: The evaluation of the patient’s values and advance directives. Journal of Family Practice, 32, 145–153.

Emanuel, L. L., Barry, M. J., & Stoeckle, J. D. (1991). Advance directives for medical care—A case for greater use. New England Journal of Medicine, 324, 889–895.

Evans, S., & Clarke, P. (1992). Rethinking how we communicate about advance directives: Hidden errors in our assumptions about planning for care. Paper presented at Annenberg Washington Program and the American Association of Critical Care Nurses.

Gibson, J. M. (1990). National Values History Project. Generations, 14(Suppl.), 52–64.

Hofmann, J. C., Wenger, N. S., Davis, R. B., Teno, J., Connors, A. F., Jr., Desbiens, N., Lynn, J., & Phillips, R. S. (1997). Patient preferences for communication with physicians about end-of-life decisions. Annals of Internal Medicine, 127, 1–12.

Luptak, M., & Boult, C. (1994). A method of increasing elders’ use of advance directives. Gerontologist, 34, 409–412.

Safford, F., & Krell, G. I. (Eds.). (1997). Gerontology for health professionals: A practice guide (2nd ed.). Washington, DC: NASW Press.

Suhl, J., Simons, P., & Reedy, T. (1994). Myth of substituted judgment: Surrogate decision making regarding life support is unreliable. Archives of Internal Medicine, 154, 90–96.

U.S. General Accounting Office. (1995). Patient Self-Determination Act: Providers offer information on advance directives but effectiveness uncertain. Washington, DC: U.S. Government Printing Office.