Decisions, Decisions

Exploring the impact of advance directives on long-term care

By Janet T. Carroll, MSN, RN, CHPN

How are healthcare and long-term planning decisions made with advancing age or progressive illness? How do people approaching their later years, know their options, make plans or make decisions? Who will speak for them if they cannot? How will their wishes be known?

Since passage of the Patient Self-Determination Act in 1991, more healthcare providers are asking patients if they have an advance directive. This inquiry has unfortunately not always been in the most meaningful way or by the most qualified individual — lacking sensitivity or possibly the questioning is too cursory. There also are the presumptions that an advance directive is only a "do not resuscitate" (DNR) order, and that the DNR is valid for all situations, regardless of a person's state of health.

Advance directive legislation in many states allows patients to control their healthcare in a variety of ways. The Advance Directive for Healthcare Act in Pennsylvania, for example, includes withholding life-sustaining treatment. In addition, all Medicare providers are required to make inquiries about a patient's advance directive at the time of initiating services, to request a copy if one exists and to offer educational material about the patient's right to direct his care.

While an advance directive can be a useful document, it has limitations: It is only applicable when a person is deemed terminally ill or in a persistent vegetative state, which may be open to interpretation; secondly, the options offered and selected on the document may not fit the situation that actually presents itself.

Decision-Makers

In addition to or within the advance directives, there can be the designation of a healthcare surrogate decision-maker, or durable power of attorney. This designation of an individual to speak for patients when they cannot speak for themselves is critical. It is also not dependent on their being deemed terminal or in a persistent vegetative state, as is an advance directive, merely that they cannot speak for themselves at the time.

The surrogate decision-maker has more flexibility in the moment to assess options and make choices "outside the boxes" of the designated treatment options on an advance directive. This designee can provide the healthcare team direction that best meets the circumstances of the moment and the patient's goals of care as understood by the patient's personal representative.

For example, "He does not want to be on life support" may mean many things. First is the definition of "life support." Does it mean ventilator, tube feeding, CPR, surgery, transfusions, dialysis, antibiotics? The value of these options may vary according to the time and circumstances. Each may have a time and a place that the interventions are appropriate to meet a patient's goals of care, while at other times they would be far beyond what would be considered reasonable or beneficial.

Assurance

How can patients be assured that someone will represent them accurately?

The key is to be able to discuss values and goals, to explore options and ideas and to anticipate future needs. It is important to have the conversation. It may be difficult, or frightening, to discuss hypothetical situations and needs surrounding progressive disability, withholding or withdrawing of treatments, or preparing for the time of death. The reality of assessing goals of care and making decisions at a time of crisis can be even more difficult.

These discussions do not "hasten death"; they make families more prepared. These discussions and the anticipatory planning can provide families both the peace of mind of having direction in caregiving decisions, but also the satisfaction later of having provided the care as desired by their loved one.

Encouraging Discussions

How can we help families have these important conversations? The important thing is to normalize the discussions as much as possible and encourage discussion within the context of the day's events. What is seen in the news or perhaps a television show?

From other situations or the experiences of others, families can speculate on how they might want to handle the same questions if they were faced with the circumstances. "What would you want me to do if that happened to you?" Family gathering times are opportunities to reminisce as well as talk future needs. These discussions also allow the elderly and their families critical perspective on other aspects associated with advancing age.

While there are many medical issues, the larger ones are in the realm of practical day-to-day as well as psychosocial and spiritual needs. Some of these needs are: how to remain active physically, mentally and emotionally; how long can independence be maintained, and in what setting; what happens when independence is lost; what happens to relationships with family and friends; what tasks or business needs should be completed and which are really important. As these areas are explored and defined, the needs of day-to-day living for the elderly can be better planned for and anticipated before a caregiving crisis.

Resources

www.agingwithdignity.org — Five Wishes

www.lastacts.org — Last Acts, Care and Caring at the End of Life

Janet T. Carroll is vice president, clinical services, at Hospice of Lancaster County, Lancaster, PA.