Social Work Roles and Opportunities in Advanced Directives and Health Care Decision-Making
by: Anita Rosen, MSW, PhD, and John O’Neill
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.
EFFICACY OF THE PATIENT SELF-DETERMINATION ACT (PSDA)
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
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
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
THE SOCIAL WORK ROLE AND OPPORTUNITY
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,
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
- 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
- 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
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of the patient’s values and advance directives. Journal of Family Practice,
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,
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.