End of Life Issues and Choices
Elderly adults are becoming increasingly interested in learning about end-of-life issues. As a woman in her late 80s observed, ‘‘I am still responsible for my life. I have end of life choices in me. I think I should take some responsibility for my death, too, don’t you?’’
It may be necessary first to overcome the resistance of adult children to discussing end-of-life issues. Often they need to be reassured that their parents or grandparents are neither depressed nor fragile. Rather, it simply makes sense to discuss death-related issues within the family, make the choices, and then go on with life. The alternative is to be overtaken by events and not have the opportunity to have one’s preferences fulfilled. Many families are discovering that by confronting end-of-life decisions they are also becoming more aware of priorities and decisions for making the most of their own lives.
End-of-life decisions include distribution of personal assets, funeral and memorial arrangements, and choice of hospice care or traditional medical care. Many experts believe it is the advance directive for health care that deserves the most attention. The current regulations and options evolved from the living will, which was introduced in 1968 as one of the first expressions of the nascent death awareness movement. The living will was intended as an instructive document for health-care personnel should a situation arise in which there was no reasonable expectation of recovery and the patient was too impaired to communicate his or her preferences. The living will requested that physicians administer medication to alleviate suffering, even if this would shorten the patient’s life. However, physician were also asked to refrain from trying to keep the person alive by medications, artificial means, or ‘heroic measures.’
The living will was received favorably by the American public. However, the document was not legally enforceable: health-care personnel were under no obligation to act in accordance with the instructions. Many physicians who sympathized with the idea behind the living wills hesitated to act upon them, out of concern that they might be accused of malpractice, or even homicide. Additionally, the language was too vague and the instructions too general to serve as guidelines in many situations (e.g., precisely what is ‘artificial’ or ‘heroic’?). These problems were partially remedied as state legislatures passed bills that established some version of the living will as a legal document (often called ‘natural death acts’). This was followed by a new generation of advance directives that encouraged the individual to be more specific. Every health-care institution that receives either Medicare and Medicaid insurance reimbursements is now required to ask all clients about their preferences should a terminal illness arise. Patients must be informed of their rights to accept or refuse treatment and to provide their health-care facility with an advance directive if they so desire. The effectiveness of this regulation, however, depends much on the hospital’s dedication to presenting the information in such a way that the patient understands the options and has a pressure-free opportunity to consider them. There have been numerous complaints about the manner in which the informed consent process has been carried out.
The major advance directive for health care options may at first appear similar, but the differences can be critical when guiding medical decision making during a crisis. An advance directive that is clear on these options is more likely to be honored by health-care personnel than the more ambiguous language of the original living will. Whether or not an individual intends to authorize an advanced directive, it is a useful learning experience to consider these options and become familiar with their implications.
Elderly adults who make the effort to learn about their end-of-life choices are in a position not only to influence future events in their own lives, but also to serve as mentors for younger adults and as an insistent voice demanding that health-care systems give the attention that advance directives for health care deserve.