Fact Sheet on End-of-Life Care

Courtesy of Sharon Valente, RN, PhD, FAAN, and APA | Published 10.17.2017

The US Supreme Court agreed that Americans should expect palliative care,
which combines active and compassionate therapies to comfort and support
individuals and families nearing the end of life. End of life is defined as that
time period when health care providers would not be surprised if death
occurred within about 6 months. Older Americans with chronic illness think
about how they would prefer their lives to end, and want a “good death”
without burdensome pain, symptoms and technology.

Most deaths (70%) occur in those aged 65 and older. Older adults want better discussions,
information, and a chance to influence decisions about their care—whether to be at home or in the hospital and to have CPR (cardiopulmonary resuscitation) (Foley, 1995). Most Americans die in hospitals (63%), and another 17% die in institutional settings such as long-term care facilities (Foley, 1995; Isaacs & Knickman, 1997). In addition, most
people are referred too late to hospice or palliative care, so they are unable to get the most benefit possible from these specialized services.


People fear that their pain, symptoms, anxiety, emotional suffering, and family
concerns will be ignored. Many critically ill people who die in hospitals still receive
unwanted distressing treatments and have prolonged pain. Many fear that their
wishes (advance directives) will be disregarded and that they will face death alone
and in misery. Physicians may use confusing or vague medical terms and talk briefly
about treatment options when the patients are too sick to participate. Most people
want to discuss advance directives when they are healthy and often want their
families involved.

Caregivers reported that a third of 1227 elderly individuals were in unnecessary pain
during the 24 hours before their death. Studies show that two thirds of elderly patients have pain in the last month of life (Foley, 1995). Although palliative/comfort care could relieve most of this pain and suffering, patients typically spend 8 days in ICU (an intensive care unit) comatose or on a ventilator and 30% of patients spend at least 10 days in ICUbefore they die (Isaacs & Knickman, 1997).

When discussing a good end of life with a patient, physicians in one study talked about 5-6 minutes, spoke for 2/3 of this time, and did not consider the patient’s values or preferences (Tulsky, Fischer, Rose & Arnold, 1998). If patients were too sick to make decisions, most wanted their family to be given choices about treatment and only 41% wanted the physician to make treatment decisions without consulting them. In 91% of cases in which physicians discussed end of life treatment options, they did so in scenarios in which most patients would not want to be treated, whereas only 48% asked patients about their preferences in reversible scenarios when there was some chance of recovery.

Culture makes a difference in use of advance directives and in decisions about end of life care. Caucasians and Asians use advance directives more than other ethnic groups. Often people who do not complete advance directives think they are a good idea but are not urgently needed and their family or physician will somehow know their wishes (Caralis, Davis, Wright, Marcial, 1993; Miles, Koeppe & Weber, 1996; Weissman, Bloch, Blank, Cain, Cassem, Danoff, Foley, Meir, Schyve, Theige, & Wheeler, 1999).

Physicians want to preserve hope. They have difficulty saying when a cure is
not possible and many are uncomfortable asking about a patient’s choices
(e.g., hospital or home treatment, breathing machines or feeding tubes, and
comfort care). Many are not experts in symptom management and emotional
support. Others believe that they must do everything to prolong life
regardless of the pain and suffering involved and fear that offering comfort
care may suggest they have given up or failed. Medical education has often
not included palliative or comfort care and compassionate care near the end
of life. Talking about end of life is difficult for many physicians and their
patients and has been a taboo topic in society generally.

The Institute of Medicine (Field & Cassel, 1997) indicated that formal medical
education should include palliative care. Lo, Quill, and Tulsky (1999) suggest that
palliative care is the standard of care for dying patients.

Our knowledge of how culture influences choices about end of life is scant
[Phillips, True, Pomerantz, 2000; Ersek, Kagawa-Singer, Barnes, Blackhall &
Koenig, 1998). Inadequate knowledge of patients’ cultures, preferences for
communication, palliative care, decision-making, and choices at end of life inhibits
care. Unless their preferences are known, patients may undergo unwanted,
distressing, and costly treatments that impair their quality of life, increase suffering,
and distress loved ones. The sociocultural values of many culturally diverse groups
conflict with the values on which the use of advance directives is based.

Clinicians may lack sensitivity to the sociocultural beliefs that influence decisions
affecting end-of-life care and may not have the knowledge to increase flexibility in
practices and standards in the application of advance directives (Ersek, et al, 1998).

An expert such as a clinical or counseling psychologist trained in palliative care can help improve communication, explain end-of life choices, and identify resources (e.g., home care, hospice care, pain management experts, spiritual support). Clinical or
counseling psychologists are skilled in helping the health care team understand the patient’s concerns and values and in helpingfamilies talk to each other. The psychologist can help people understand confusing medical terms and put their choices on paper,
including decisions about feeding tubes or breathing machines and restarting the heart (CPR). Psychologists can also help treat the anxiety, depression, and other mental health distress that may result from your disease or stress near the end of life. Psychologists
work with other professional caregivers such as nurses, social workers, and chaplains who also have important roles to play in helping provide compassionate care near the end of life.

Patients can plan ahead, write down their choices, and share these with loved ones and physicians. Advance planning for health care helps people determine their own futures, often with the support of significant others (Barry & Henderson, 1996). Respect for patient autonomy has been included in the medical codes of ethics and in United States law (Benbassat, Pilpel, & Tidhar, 1998). Since 1990, The Patient Self Determination Act (PSDA) has required health care providers to document advance directives and educate
patients about their rights to accept or refuse treatment.

Researchers and service providers need a better understanding of how to provide compassionate care near the end of life to older adults from diverse cultures and backgrounds and of the role of cultural, religious, and socioeconomic factors influencing end-of-life decision making. Improving healthcare providers’ education, communication skills, and cultural sensitivity, conducting research, and creating policies that improve end of life care are recommended.

Reproduction of this text is encouraged. However, copies may not be sold. Comments and questions about this material should be directed to John Anderson, PhD, Staff Liaison to APA Ad Hoc Committee on End-of-Life Issues (Phone: (202) 336-6051; E-mail: janderson@apa.org).

Prepared by Sharon Valente, RN, PhD, FAAN, in collaboration with the other members of the APA Ad Hoc Committee on End-of-Life Issues

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