Talking about end of life plans are perhaps the most difficult discussions that families can have. When an older family member becomes ill, it may be even more difficult for a family to discuss end of life issues because they do not want to cause stress to the ailing elderly family member or to talk about death and final decisions. Many older adults may possess the assumption that their family or a particular relative will make critical end of life decisions even though a discussion about specific plans has never taken place. Unfortunately, by the time an elderly family member has reached a point where he or she can no longer make decisions about end of life care, crucial questions about their desires for end of life care are left without answers for family and caretakers. Health care professionals may also find it difficult to speak with grieving family about end of life care decisions, especially if the family is from a different race, ethnicity, culture, or country than themselves. Although it is difficult, it is important that end of life care discussions should take place long before crisis situations occur, and if this is not possible that it is done with awareness and sensitivity for the patient and grieving family.
An advanced directive (AD) is one of the ways that people can ensure they received the end of life care they want to have. An AD is a “legal documents that allow you to convey your decisions about end-of-life care ahead of time. They provide a way for you to communicate your wishes to family, friends and health care professionals, and to avoid confusion later on” (“Advance Directives” n.d.). Statistics demonstrate that close to 75% of nursing home patients have ADs or living wills dictating the care they wish to receive should they lose the capacity to speak for themselves (Lloyd 2011). However, only 28% of long-term care patients who live at home have ADs or living wills; this is an especially difficult issue for the pre-baby boomer generation who value independence above all else or any patient who prefers to remain at home though the end of a terminal illness (Lloyd 2011). Additionally, African Americans are much less likely to have ADs or living wills; according to William McAuley, an expert in long term care, this discrepancy is “because of the discrimination African-Americans have faced from the medical profession in the past. . . They wonder, would a doctor take extra measures to save a white person?” (Lloyd 2011).
The issue of how race, culture, or ethnicity affects end of life care decision making is one that particularly concerns some researchers, physicians, families, and other health care professionals in recent years. As for the mistrust purported by William McAuley, a 2002 study by Krakauer et al. says that research concerning why African Americans or other minorities may mistrust the medical profession “implies that mistrust is a problem that minorities must overcome. It blames the victim of discrimination and racism for a normal response to being victimized . . . the onus should be on physicians and the healthcare system to consistently demonstrate trustworthiness” (Jones 2005, p. 439). It is easy to imagine how, for instance, a refugee from Iran may find the procedures and bedside manner of American physicians to be mysterious, intimidating, or even frightening in comparison to what he or she has experienced in the home country. However, health care professionals must be aware that the same fears may exist for various cultural, racial, and ethnic groups who consider themselves to be American, even if it is not as obvious as the example of the Iranian refugee.
Although much is made of generational differences in preferences for end of life plans, a variety of literature suggests that people’s decisions are more likely to relate to culture and ethnicity than other factors such as education, age, or socio-economic status (Jones 2005, p. 438). However, some researchers warn doctors and others against using a “cookbook approach” to culture and ethnicity when it comes to end of life issues. A “cookbook approach” means that a particular race, culture, religion, or ethnicity is described as comprising of particular “ingredients” or characteristics, followed by directions on what to expect from or how to handle this group of people. Researcher Kip Jones describes a series by the Nursing Times published from 1989 to 1992 about ‘Death and Dignity’, which illustrates the belief systems and approaches to dying and death of 13 different religions (2005, p. 440). Although documents such as these may provide some useful information, according to Jones, they may also promote stereotypes and myths (2005, p. 440). Jones believes that this “cookbook” approach does not consider the many variations that exist within various ethnic groups, religious groups, and also fails to consider generational or group differences (2005, p. 441). In other words, physicians and other health care professionals should place importance on exploring a patients end of life care wishes including racial, cultural, religious, and ethnic traditions, but they must consider that within these groups there can be many varieties of desires and beliefs and not jump to conclusions.
Another reason that some people make lack end of life care plans is that research shows that the assumption made that everyone is literate, all people have good vision, and that people always respond as individuals versus responding in groups (Jones 2005, p. 438). It is easy to imagine how an illiterate or uneducated person and their grieving family may have difficulty in planning end of life care. An individual who wants to make an end of life care plan such as an AD may find that he or she is unable to read the text of the directive because of illiteracy or failing vision or blindness. It is also easy to imagine that an illiterate person can feel shame because they cannot understand the words of a document and that he would shake his head at a doctor or family member saying, “I don’t need that. My wife will know what I want.” The situation could be different if an experienced doctor or social worker told patients that the information about end of life care they want to discuss is often not understood by people, so if there is something the patient does not understand, he or she should stop them and say the information is hard to understand. Rather than framing the conversation as one about death, the health care professional can begin by telling the patient the information is being discussed in order to make sure the patient receives the best care possible while in the hospital, nursing home, outpatient facility, or in his or her own home. Again, as with cultural issues, better end of life care can be facilitated by health care professionals for individuals and their families if assumptions are not made concerning issues such as literacy, the physical ability to comprehend, or other factors relating to their ability to make use of the information about end of life care given to them.
In addition to having generational, religious, ethnic, racial, or cultural barriers to creating end of life care plans, there can also be institutional barriers to quality end of life care. Researchers Knight and von Gunten list four examples of institutional barriers to quality end of life care, including “Policies that prohibit families from freely visiting dying patients, policies that insist that a dead body be moved within 4 hours of death, absence of pain and symptom management services, [and] absence of policies that promote adequate assessment and reporting” (2004). Unfortunately, a health care system that is not providing good end of life care may have cultures that Knight and von Gunten say are “complex and difficult to change” (2004). In other words, hospitals, nursing homes, and other places tending to the ill and the dying may be set in their administrative ways and unwilling to change. Besides the institutional flaws, existing laws and regulations may also lead physicians to fear prosecution if they prescribe medications that are intended to relieve suffering and pain for dying patients (Knight & von Gunten 2004). Additionally, Knight and von Gunten write that financial reasons can prevent quality end of life care; “high-technology care” involving life-prolonging medical devices has the most potential to be lucrative for health care facilities and professionals, while “cognitive and counseling activities” are the least profitable but the most necessary for patients needing end of life care (2004). For patients and families who find themselves unexpectedly dealing with an end of life care situation, institutional defects such as these can be overwhelmingly intimidating, preventing any conversation about patient needs or desires, including ADs.
There are varieties of reasons why a person may not have an AD. One may be a simple rejection of the idea, the person believing that a spouse or other family member will be able to make those decisions for him or her should the need arise. Another reason could be the inability to face the idea of death or dying. In a study done by a hospital, ADs were given to all admitted patients, after which 26% of the patients completed an AD (Salmond and David 2005). However, sometimes the information provided about ADs by hospitals is simply a pamphlet that lets patients know that ADs exist and tells them to consult an attorney in order to complete one. A patient in a hospital may not have the time, financial means, or physical and psychological energy to contact an attorney in order to create of these documents. Researchers found that “elderly people are resistant to planning in advance for a hypothetical future, particularly for a serious illness when death is possible but not certain” and that elderly shut-ins’ worldview comprised of “living life a day at a time,” or in other words, ignoring the future in preference for the present moment (Jones 2005, p. 442). A fear of death, embarrassment at discussing the subject with family members, not wanting to admit the seriousness of a disease, religious or cultural reasons, and many other factors can prevent a person from creating an AD.
The effect of having no end of life care plan can be devastating to the individual suffering a terminal illness and their family, both personally and financially. Without a plan, people can “needlessly suffer when they have no chance of survival” says McAuley (Lloyd 2011). Without an AD or living will, patients may also find themselves at the mercy of doctors who interpret the Hippocratic Oath to mean that a patient’s life must be sustained at all costs or family members in denial of how severe the patient’s condition truly is. However, physician assistance at the time of death is most often considered to be moral when it is “passive, voluntary: the physician lets the patient die by refraining from interventions which would be useless in any case, in accordance with the wishes of the patient” (“Topics” n.d.). This is not assisted suicide, but a patient and doctor deciding together to abstain from further medical care for the patient so the disease or condition follows its inevitable course toward death. However, in order for it to be voluntary, this means that either the patient or a caretaker with a medical power of attorney is allowed to make the decision that life-sustaining intervention should be discontinued. Without an AD, a patient’s life could be sustained at great expense for months or even years in spite of the fact that there is no hope of recovery and that the patient is unable to communicate any change in desire to continue this type of care. If family members and physicians argue over what the end of life care should be, the decision could be left to a judge who comes up with an answer that satisfies no one, least of all patient who is ill (“Put it in Writing” 2012, p. 10). These situations underscore the importance of having an AD and having the difficult conversation with older family members about what their end of life care plans are.
Considering the undesirable effects of having no AD, living will, or other document specifying end of life care for an older family member, many people desire to have a conversation about end of life care with family members, but do not know where to begin. The U.S. Department of Health and Human Service’s National Institute on Aging publishes a useful book, End of Life: Helping With Comfort and Care, that presents a variety of information on dealing with all end of life related issues. Family members who are unsure about how to approach an elderly family member regarding end of life care will find the section on “Planning For End-of-Life Care Decisions” to be especially valuable. The book advises that family members who wish to discuss end of life care plans with elderly family members should focus on what their family member’s values are instead of trying to discuss specific treatments, like feeding tubes or cardiac resuscitation (“End of Life” 2012, p. 58). For instance, the book suggests, “Try saying something like, ‘When Uncle Walt died, I thought you seemed upset that his kids wanted to put him on a respirator’” (“End of Life 2012, p. 58). Family members are likely to be more receptive to a values-oriented conversation than one in which he or she is approached with warnings and criticism about all of the unfortunate things that can happen if no end of life care decisions are made. The information provided by the National Institute on Aging’s book can also serve as a reminder about the concerns of patients for health care professionals who must give bad news to a patient that their condition is most likely terminal. Its emphasis on a values-based approach can help physicians and other health care professionals avoid stereotyping and make sure each patient receives the desired and best possible care.
Some patients who realize their condition is terminal may feel confused about the steps they should take before their condition worsens. Groups such as the National Hospice and Palliative Care Organization provide information for patients, families, and physicians regarding end of life care. In their brochure, “If You or Someone You Love is Very Ill . . . Ask Tough Questions,” they suggest a number of questions for patients or family members to ask doctors, health care agents, lawyers, loved ones, spiritual caregivers, and social workers regarding end of life care. Questions for doctors include “Will you talk openly and candidly with me and my family about my illness?” to “Will you support me in getting hospice care?” (“If You” 2008, p. 1). Questions for lawyers include “What sources of payment are available to cover long term care costs?” and “Will my advance directive be honored if I become ill in another state?” (“If You” 2008, p. 1). Documents such as this are valuable for both the patient and his or her family members because they can serve as a starting point for conversations about end of life care as well as a checklist to make sure all aspects of end of life care are covered to everyone’s satisfaction.
Discussing end of life care is one of the most difficult conversations a patient, the patient’s family, and the patient’s physicians can ever have, especially if there is an imminent terminal condition. There are no pat questions and answers that can be asked or assumed for patients because patients vary widely in age, religion, race, ethnicity, culture, and other factors. However, whatever the background of the patient may be, creating an end of life care plan such as an AD is always an advantage. It can be done with sensitivity toward the patient and family’s values. Having a plan can help patients and families navigate a difficult health care system or particular institution that may not honor the wishes of a patient or their family without such a document. It can help prevent financial problems and arguments as well as pain and suffering for the patient. Discussing and creating and end of life care plan may be difficult, but the fact remains that not discussing it and having no plan will be even more difficult when end of life care becomes necessary.
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