15 End-of-Life Decisions

Advance Directives

Advanced care planning refers to all documents that pertain to end-of-life care.  These include advance directives and medical orders.  Advance directives include documents that mention a health care agent and living wills.  These are initiated by the patient.  Living wills are written or video statements that outline the health care initiates the person wishes under certain circumstances.  Durable power of attorney for health care names the person who should make health care decisions in the event that the patient is incapacitated.  In contrast, medical orders are crafted by a medical professional on behalf of a seriously ill patient.  Unlike advanced directives, as these are doctor’s orders, they must be followed by other medical personnel.  Medical orders include Physician Orders for Life-sustaining Treatment (POLST), do-not-resuscitate, do- not-incubate, or do-not-hospitalize.  In some instances, medical orders may be limited to the facility in which they were written.  Several states have endorsed POLST so that they are applicable across heath care settings (IOM, 2015).

Despite the fact that many Americans worry about the financial burden of end-of-life care, “more than one-quarter of all adults, including those aged 75 and older, have given little or no thought to their end-of-life wishes, and even fewer have captured those wishes in writing or through conversation” (IOM, 2015, p. 18).

Cultural Differences in End-of-Life Decisions

According to Searight and Gafford (2005a), cultural factors strongly influence how doctors, other health care providers, and family members communicate bad news to patients, the expectations regarding who makes the health care decisions, and attitudes about end-of-life care. In the United States, doctors take the approach that patients should be told the truth about their health.  Outside the United States and among certain racial and ethnic groups within the United States, doctors and family members may conceal the full nature of a terminal illness as revealing such information is viewed as potentially harmful to the patient, or at the very least, is seen as disrespectful and impolite.  Holland, Geary, Marchini and Tross (1987) found that many doctors in Japan and in numerous African nations used terms such as “mass,” “growth,” and “unclean tissue” rather than referring to cancer when discussing the illness to patients and their families. Family members actively protect terminally ill patients from knowing about their illness in many Hispanic, Chinese, and Pakistani cultures (Kaufert & Putsch, 1997; Herndon & Joyce, 2004).

In the United States, we view the patient as autonomous in health care decisions (Searight & Gafford, 2005a), while in other nations the family or community plays the main role, or decisions are made primarily by medical professionals, or the doctors in concert with the family make the decisions for the patient. For instance, in comparison to European Americans and African Americans, Koreans and Mexican-Americans are more likely to view family members as the decision makers rather than just the patient (Berger, 1998; Searight & Gafford, 2005a). In many Asian cultures, illness is viewed as a “family event”, not just something that impacts the individual patient (Candib, 2002). Thus, there is an expectation that the family has a say in the health care decisions. As many cultures attribute high regard and respect for doctors, patients and families may defer some of the end-of-life decision making to the medical professionals (Searight & Gafford, 2005b).

According to a Pew Research Center Survey (Lipka, 2014), while death may not be a comfortable topic to ponder, 37% of their survey respondents had given a great deal of thought about their end-of-life wishes, with 35% having put these in writing. Yet, over 25% had given no thought to this issue.  Lipka (2014) also found that there were clear racial and ethnic differences in end-of-life wishes (see Figure 10.10). Whites are more likely than Blacks and Hispanics to prefer to have treatment stopped if they have a terminal illness.  While the majority of Blacks (61%) and Hispanics (55%) prefer that everything be done to keep them alive. Searight and Gafford (2005a) suggest that the low rate of completion of advanced directives among non-whites may reflect a distrust of the U.S. health care system as a result of the health care disparities non-whites have experienced.  Among Hispanics, patients may also be reluctant to select a single family member to be responsible for end-of-life decisions out of a concern of isolating the person named and of offending other family members, as this is commonly seen as a “family responsibility” (Morrison, Zayas, Mulvihill, Baskin, & Meier, 1998).

Euthanasia

Euthanasia is defined as intentionally ending one’s life when suffering from a terminal illness or severe disability (Youdin, 2016). Euthanasia is further separated into active euthanasia, which is intentionally causing death, usually through a lethal dose of medication, and passive euthanasia occurs when life-sustaining support is withdrawn. This can occur through the removal of a respirator, feeding tube, or heart-lung machine.

Physician-assisted suicide is a form of active euthanasia whereby a physician prescribes the means by which a person can die.  The United States federal government does not legislate physician- assisted suicide as laws are handled at the state level (ProCon.org, 2016). Six states currently allow physician-assisted suicide. The person seeking physician-assisted suicide must be: (1) at least 18 years of age, (2) have six or less months until expected death, and (3) obtain two oral (or least 15 days apart) and one written request from a physician (ProCon.org, 2016).  Table 10.4 lists the states that allow physician- assisted suicide and the date the act was passed.

Since 1997 when the law was passed in Oregon, 1545 people had lethal prescriptions written and 991 patients had died from the medication by the end of 2015 (Oregon Public Health Division, 2016).  Canada and several European countries, including Switzerland, Belgium, Luxembourg, and the Netherlands, also allow physician-assisted suicide.  As of 2014, Belgium is the only country that allows the right to die to those under the age of 18.  Stricter conditions were put in place for children, including parental consent, the child must be suffering from a serious and incurable disease, the child must understand what euthanasia means, and the child’s death must be expected in the near future (Narayan, 2016).

The practice of physician-assisted euthanasia is certainly controversial with religious, legal, ethical, and medical experts weighing in with opinions.  The main areas where there is disagreement between those who support physician-assisted euthanasia and those who do not include: (1) whether a person has the legal right to die, (2) whether active euthanasia would become a “slippery slope” and start a trend to legalize deaths for individuals who may be disabled or unable to give consent, (3) how to interpret the Hippocratic Oath and what it exactly means for physicians to do no harm, (4) whether the government should be involved in end-of-life decisions, and (5) specific religious restrictions against deliberately ending a life (ProCon.org, 2016).  Not surprisingly, there are strong opinions on both sides of this topic.  According to a 2013 Pew Research Center survey, 47% of Americans approve and 49% disapprove of laws that would allow a physician to prescribe lethal doses of drugs that a terminally ill patient could use to commit suicide (Pew Research Center, 2013). Attitudes on physician-assisted suicide were roughly the same in 2005, when 46% approved and 45% disapproved.

The following table depicts a profile of medically assisted deaths in Canada in 2017 (excluding Quebec, Yukon, Northwest Territories, and Nunavut).