National media coverage of the Terri Shiavo case earlier this year has encouraged people to take control of their future medical care, after witnessing the consequences faced when plans are not considered or known by loved ones.
One trend is for people to complete advance directives. Advance directives are documents that address medical treatment desires (living wills) and the appointment of surrogate decision makers in the case of incapacity (durable powers of attorney for health care). Living wills set forth in writing specific treatment decisions that people would either desire or would not want in the future should they become unable to express their desires. However, there are many problems with this directive. It is difficult to anticipate future medical treatment scenarios and living will statements are often vague (i.e. “no heroic efforts”) and difficult to interpret. Thus, it is generally advised to have both a living will and appoint a surrogate decision maker.
Choosing a surrogate decision maker can be difficult. Research suggests that “surrogates'” decisions do not always agree with what the person would have wanted. People typically chose a close relative to serve as surrogate-although that may not be the best choice. Surrogates should be capable of emotionally dealing with decision-making needed at the time of incapacity and changing health conditions. Choosing a surrogate is particularly important for people in non-traditional relationships (such as relationships outside of a legal marriage) and those who are distant from their loved ones as well as those who know few people. In addition, good communication with your surrogate helps ensure that your desires and values are prominently considered in future decision-making.
A large trend is focused on thoughtfully expressing your future desires. Directives such as the Five Wishes and ethical wills (www.agingwithdignity.org/5wishes.html) represent an increasingly popular planning option that encourages people to reflect on what is most important to them. People should consider their goals in treatment and values in living. Quality of life is a subjectively defined experience and people value aspects of their life differently than others. For some, independence is most valued and becoming dependent on others for daily care is a fate worse than death.
Although advance directives meet the legal requirements for advance care plans, there is a growing consensus that the documents are limited. A key trend views advance care planning as a process that is best conducted between people and their relatives or loved ones. Communication between family members regarding advance care plans is fraught with difficulties. Barriers to communication lie with both adult child and parent. Family members may avoid discussing advance care plans for a variety of reasons including fears of death and abandonment, difficulty anticipating loss, and unspoken personal beliefs or expectations regarding the end of life. In addition, communication patterns are unique to each family and influenced by the roles played by members in the family as well as relationships between members, their past histories, and a host of cultural and religious factors.
Communication between individuals and their loved ones is important. In the absence of communication regarding advance care plans, families are obliged to make decisions within time frames that are likely to be constrained by health care provider practices and health care organization policies. In cases where advance care plans were not communicated, families will face life and death decision-making with the added burdens of time involvement, physical tasks, financial costs, emotional burdens, and mental health risks. It is not uncommon that during such stressful periods, family emotions, conflicts, grief, and guilt further complicate the decision-making process.
Families ought to consider discussing advance care plans with each other long before a crisis ensues. A growing trend is to seek professional planning, through geriatric case managers and others, to work through these family issues. Indeed, there is much to be gained from the communication of advance care plans. For the person who has made advance care plans, benefits include:
- Comfort in being prepared for end of life care
- Sense of independence is enhanced
- Personal wishes are more likely to be honored
- Surrogate is clearly identified
- Trust is fostered among family members, and
- Advance care plans can be enacted in a timely manner
- Clarity regarding person’s wishes
- Increased comfort and decreased conflict among family members and between family, and provider upon person’s incapacitation; and
- Preparation for eventual reflection that advances care plans were in agreement with person’s values
The portability of care plans and advance directive documents is also a major concern. Portability refers to care plans and advanced directives being different from state to state. Another growing trend is to store the documents electronically through a variety of nationally based websites. States and localities are likely to soon offer the electronic storage and retrieval of directives. At the time of this writing, Arizona has already enacted such a public service.
As the nations’ population continues to age and medical technology continues to prolong the natural life course, most families are destined to face future medical decision-making in the days ahead. Considering the benefits of advance care planning, it is surprising that so few have discussed their goals and desires with their families. So begin the discussion, look for opportunities to advance the discussion, be flexible and recognize that advance care planning is a process and not a one-time event. Use professionals such as physicians, geriatric social workers, nurses, clergy, case managers, and elder law attorneys to facilitate the dialogue. Your involvement in advance care planning enhances the likelihood that your personal health goals will be honored throughout the end of life.