Health and Illness

Death and Dying

Life Support and Assisted Death

Advances in medicine that extend life can raise social and cultural questions about death and dying.

Developments in science, technology, and medicine lengthen the average life span and allow doctors to prolong the lives of people who would otherwise die of disease. In 2018 the average life expectancy at birth in the United States was about 79 years old. In 1900 the average life expectancy was 47; in 1950 it was 68 years old. As average life span has increased, the percentage of the population that is elderly has increased. A larger elderly population means more people are dealing with issues of aging and death. Older people receive more treatments and procedures that prolong life than they did in the past, sometimes making it hard for family members and medical providers to know when to stop interventions and allow a person to pass away. This is true for younger adults and children facing serious medical issues as well.

Medical technology, such as life support, allows people to remain living following incidents that in the past would have killed them. An old definition of death—no discernable heart or brain activity—is no longer always applicable, because modern technology allows some patients showing heart and brain activity to be resuscitated. People with no brain activity can be kept on life support for years and still be considered "alive" in a legal sense. The understanding of death continues to evolve. Medical researchers have successfully reanimated pigs' brains, keeping them electrically active for several hours. It is possible that some patients considered dead in one sense may not be incurable from another perspective. However, some patients might prefer not to continue to live if their brains or other organs have failed. Sometimes disagreements among family members, or between family and medical professionals, lead to difficult and painful conflicts over whether or not to end life support. In the United States the case of Terri Schiavo drew widespread attention from 1990–2005. Following a cardiac arrest, Schiavo was resuscitated and stabilized using life support. However, she had suffered massive brain damage and was left in a persistent vegetative state, a condition where a severely damaged brain continues to perform some involuntary action, but there is no consciousness or cognition (mental processes). Schiavo's husband felt that she would not want to remain on life support, but her parents objected and brought legal challenges to keep Schiavo on life support. The case continued for a period of 15 years. Both pro-life and right-to-die activists took up Schiavo's cause. The pro-life movement opposes medical decisions that end life, including abortion, assisted dying and physician-assisted suicide, while the right-to-die movement advocates giving individuals and families power to choose to end treatments and interventions that prolong life artificially.

Increasingly, the world's medical establishment is embracing the idea of the right to die, the right to choose to end one's life because of incurable illness and suffering. Assisted dying refers to actions that help a terminally ill person die without prolonged suffering. Sometimes also called assisted suicide, euthanasia, or death with dignity, the practice of helping or allowing a terminally ill person to die is controversial. The terms themselves are a subject of debate and different groups, societies, and jurisdictions define them differently. One approach is physician-assisted suicide, a process in which a doctor knowingly helps a patient die. It is highly regulated or banned in most countries, sometimes for religious reasons and sometimes for ethical or legal ones. Countries and states that allow physician-assisted suicide put in place strict measures to ensure that it is not misused in circumstances where patients are potentially undecided or in ways that discriminate against disabled individuals or those with serious depression. Forms of medically assisted dying are allowed in only a few countries, including Switzerland, the Netherlands, Belgium, and Canada. In the United States, several states, including Oregon, Colorado, Hawaii, and Vermont, as well as Washington, DC, allow some form of physician-assisted suicide. Still, the concept remains highly controversial. Many people worry that it will lead to doctors or unloving family members choosing to end the lives of patients who are a burden. Others have religious or moral objections to any act that results in death. Supporters of the right to die argue that alleviating suffering and allowing people some measure of control in how they or their loved ones die is a more important moral issue.

In many instances, patients being considered for a physician-assisted death can no longer communicate or may not be fully aware of their situation, leading to potential conflicts between physicians and family members over whether the patient should be kept on life support. Patients can help ensure that their wishes are respected by taking steps while still conscious and lucid. They may delegate to a trusted family member their power of attorney, the legal authority to make important decisions on another person's behalf. They may also complete and notarize a living will, a legal document expressing a person's desires regarding end-of-life decisions. These steps can help prevent conflicts over how to handle end-of-life care.

Social and Cultural Attitudes toward End-of-Life Care

Race, ethnicity, religious affiliation, and other factors shape how different social groups view death and end-of-life care.

Social behavior in relationship to death and dying is shaped by social and cultural norms. Beliefs and attitudes about death and the dead can vary widely among different communities and subcultures. This results in different attitudes among racial and ethnic groups toward end-of-life medical care and decisions. In the United States more white Americans than African Americans and Hispanics say they would have doctors stop treatment and allow them to die if they had an incurable condition and were suffering. In a 2013 survey 65 percent of white Americans said they would choose to stop treatment under these conditions; 40 percent of Hispanic respondents and 33 percent of African American respondents said they would stop treatment. However, some differences emerge when religious affiliation is considered. Among white, mainline Protestants, 72 percent said they would stop treatment, while 62 percent of white evangelical Protestants gave the same answer, as did 61 percent of unaffiliated (nonreligious) white Americans. Sociologists consider the social and cultural reasons that lead to these differences among religious groups. Religious beliefs likely play a part, but the similarity in responses of white evangelicals and white unaffiliated respondents suggests that holding religious beliefs is not the only factor that shapes attitudes toward death, dying, and suffering.

Hospice care, supportive end-of-life care for terminally ill patients with the goal of keeping patients comfortable and free of pain, is another issue where differences are seen among racial groups. African Americans are much less likely than white Americans to use hospice care. Similarly, African Americans are less likely to use living wills (also called advance care directives), legal documents that specify a patient's wishes for care in situations where life support measures could be used or declined. Researchers point to the long history of racial discrimination, including within the health system, as one factor in African Americans' reluctance to use hospice care and advance directives. A lack of trust felt by some African Americans toward institutions such as hospitals is rooted in experiences of discrimination in having access to health care. Until the mid-20th century, many hospitals were racially segregated, and care at facilities open to African Americans was often substandard. Incidents such as the Tuskegee study, an unethical experiment conducted by the federal government between 1932 and 1972, are well known and serve as cautionary tales. In the Tuskegee experiments, black men were studied for the purpose of learning about syphilis, a potentially fatal sexually transmitted disease. The participants were misled about the study, and those with syphilis were not treated but were simply observed for the purpose of collecting data. The consequences of this type of incident remain present in the U.S. health system. One major consequence is that some African Americans do not trust that medical professionals will tell them the truth or care about their best interests. This may impact their feelings and decisions about end-of-life care.

Kübler-Ross Stages of Grief

The Kübler-Ross five stages of grief describe the psychological process individuals go through when they understand that they or a loved one has a terminal illness.

Death and dying have an immense emotional impact on patients and their loved ones. Elisabeth Kübler-Ross (1926–2004), a Swiss American psychiatrist and researcher, developed the Kübler-Ross stages of grief, five stages that individuals go through when they understand that they or a loved one has a terminal illness:

  • denial: belief that the medical diagnosis is incorrect
  • anger: anger at oneself, others, the universe, a higher power, or the medical establishment
  • bargaining: attempting to bargain with a higher power or reform one's lifestyle in the hope that it will change the future
  • depression: a period in which one becomes isolated from others and falls into a low mood
  • acceptance: calmly facing the reality of death

However, not all people experience the five stages. Sociologists use the Kübler-Ross model to frame their understanding of how individuals and social groups approach death and dying. These approaches vary by culture and change over time. Increased understanding of the stages that people may pass through when faced with news of a terminal illness has helped researchers and medical providers shape the kinds of support and advice they give to patients and families dealing with end-of-life decisions and the aftermath of losing a loved one.