Long-Term Care and Advance Care Planning

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Advance care planning is not just for people who are elderly or sick. Three landmark legal cases that involved decisions about end-of-life care concerned previously healthy young women in their 20s or 30s — Karen Ann Quinlan, Nancy Cruzan, and Terry Schiavo — who suffered life-threatening traumatic events. Anyone at any age can be in an accident or develop a serious illness.

As a person ages, of course, the likelihood of an event requiring a treatment decision increases. And a quick conversation about a friend's situation or a news report most likely will not be enough to ensure that your own or your parent's wishes are understood and followed.

What everyone needs to do is have a series of conversations that involve family, doctors, clergy, or other trusted individuals. Make a checklist of the different aspects of care that you should address in advance.

The importance of advance planning

No one can predict exactly how and when the need for someone else to make a medical decision for you will arise, what the medical situation will be, and what specific choices will have to be made. That is why a series of discussions is more likely to convey your thinking in depth than a one-time conversation.

Although you and your family members are probably reluctant to have a serious discussion about it, keep in mind that talking about the possibility of a serious injury or illness does not make it happen. In fact, everyone will probably feel better afterward.

However, wishes may change, so it is important to review any documents you have created at least every few years and more often if warranted to make sure that they still reflect your current thinking. The results of the conversations can then be incorporated in a variety of documents.

If you do not have a documented advance care plan, state law will determine who makes decisions for you. Most states have a priority list of family members who will be chosen to speak for you when you can't make a healthcare decision.

The person you may have chosen to speak for you may be far down on the list, or not on it at all. And if family members cannot agree, a court may be called upon to make the decision.

Make wishes known with advance directives and living wills

An advance directive is a general term for a document that tells healthcare providers the kinds of medical treatment you do or do not want. For example, you may refuse tube feeding or ventilators or antibiotics if, in your view, they will not provide you with sufficient benefit, even if they may prolong your life.

You have a right, which is well established in law and medical ethics, to refuse any treatment for whatever reason. You can also say that you want all treatments that offer any possibility of prolonging your life, even if they will be painful or burdensome.

But you do not have a right to demand any particular treatment, because healthcare providers may not be willing to provide it for reasons of conscience or because they consider it futile, a vague term but one that carries some weight in medical and legal circles. In such cases, they must refer you to another provider.

A living will is another name for the part of an advance directive that sets out your wishes. You can follow the legal form for your state or write a more detailed expression of your personal philosophy.

Advance directives typically name the person who you want to make healthcare decisions on your behalf if you are unable to speak for yourself. The choice of your healthcare proxy (sometimes called a durable power of attorney for healthcare, surrogate, or agent) is especially critical, precisely because the decision may not be clear-cut and may require interpretation of what you have expressed in the advance directive (see later in this chapter for information on choosing a healthcare proxy).

Did you mean, for example, no antibiotics ever or just when they would prolong dying? Would you have agreed to a trial of a therapy to see if it improved your condition? Talking about these questions ahead of time, even in hypothetical ways, gives your healthcare proxy some guidance.

An advance directive comes into play only when the person is unable to make healthcare decisions. If, for example, you and your parent disagree about whether surgery is advisable, and you are the healthcare proxy, you cannot decide in favor of surgery without your parent's consent. Usually the point at which the healthcare proxy takes over is coma, unconsciousness, or a doctor's determination of inability to make healthcare decisions.

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