It’s a subject none of us wants to talk or even think about: What would your health care preferences be if you could not communicate your wishes?
But, if we do not face the question, we may not receive the treatment we want, in the way we want. Our family and friends may become confused and distraught because we did not discuss the subject.
At the January evening patient education session, participants learned more about the process of advance planning, which can ease the way toward more satisfying family outcomes. Linda Darrell, LCSW-C, helped the group understand the concept and learn how to prepare a plan.
Life Care Planning is the process of communication among patient, family, friends, and the health care team, in which the patient identifies someone to speak for him or her and to make decisions if he or she becomes unable to do so. Planning also includes a statement on the type of future medical care the patient wants to have. The plan should be written, preferably, and updated periodically. The purpose of the plan is to guide care decisions when a patient cannot communicate his or her preferences.
Ms. Darrell told the story of a man who went into a coma as a result of an automobile accident. The family wrestled with decisions concerning his care. “He never told us what he wanted,” they said, which caused them great distress, adding to their fears for him. She pointed out that physicians are beginning to ask patients their preferences, although too few do so. “Medical technology now can put us in the position of ‘playing God’ and we need to decide how we deal with these amazing new techniques,” she pointed out.
In making plans for health care, the patient needs to “figure out what you want—the things that are important to you, your values, the quality of life you desire, then communicate it to others, putting it in writing,” advised Ms. Darrell. She warned, “If we do not communicate these preferences, we do not do our family justice.”
“But, making these decisions requires serious thought,” she added. “Think over your own strongly held beliefs—perhaps they are spiritually guided—and how they would affect the quality of your life. Consider the things that are important to you regarding a chronic illness, and what you would prefer. Consider if you were unable to communicate your wishes if your illness progresses to the point that you or your family feel it is contradictory to the quality of life that you would desire. At that point the decisions that would be made because you had conducted a life planning discussion with your family, would lend guidance to the situation.”
She cautioned that the terms “always” or “never” in the document should be used carefully, so that some treatments are not precluded. One’s choices are not always black and white; choices can be nuanced. And, as one moves through the illness, the plan can be adapted. It is a work in progress that should be reviewed and changed if necessary if there is a major life event or if there is a significant change in physical condition.
As an aside she noted, “We think that because someone else is sick, we will be here longer, but there are no guarantees in life.” In short, all family members ought to think about and construct their own plans for the future.
The second part of making a plan, Ms. Darrell said, is to communicate it to others, and especially to someone you name as your advocate and spokesperson. The person does not have to be a family member, but it ought to be someone in whom you have confidence and would represent your wishes advocating for them. Without a designated spokesperson, the legal system will designate someone, and it might be an individual you would not have chosen for yourself.
She pointed out the three parts to an advance directive—noting that each part serves a specific purpose. The Proxy Directive appoints a spokesperson, also known as a Durable Medical Power of Attorney, which goes into effect when a patient is unable to communicate. An Instructional Directive informs the physician your choices about medical care. A Personal Statement allows you to express what is most important to you; it is personalized and would describe your religious belief, define your quality of life, and related personal preferences.
Discussing one’s preferences helps to refine the plan and allows caregivers to process those requests as well. “Those people who have advance directives are more focused on the process of care giving rather than worrying about the ‘what ifs’ of the situation,” she observed.
The process of making decisions can take a while, but should not be put off indefinitely. Changes to the document can be made at any time. “You can always change your mind,” she said.
