Chapter 3 Life, Death, and Care Instructions

• Library: Alzheimer's and the Practice of Law: Counseling Clients with Dementia and Their Families (ABA) (2013 Ed.)

CHAPTER 3 LIFE, DEATH, AND CARE INSTRUCTIONS

Elder law lawyers facilitate discussions about life, death, and disability. This is not an easy task, because nobody really wants to talk about his or her own death.

People know that they are going to die—someday. But in their heart of hearts, most people cannot believe that they are actually going to die. How else can we explain the fact that 85 percent of the adult population does not have a simple will, power of attorney, or health-care directive? The most obvious answer is that they must not truly believe that they are going to die. Even more importantly, most people do not plan for their incapacity because they do not believe that they will reach a point where they will not have the mental ability to be in control of their own finances or of their own decision making about their health care.

Most couples can expect that their health will track alongside of each other pretty much the same way from the ages of 20 to 60. They can expect to be primarily healthy and only experience acute care problems. However, during the period from 60 to 80 years old, there is a good chance that one of the two is going to become incapacitated and one spouse is going to end up taking care of the other.

Practice Pointer: Incapacity Defined

An elder care lawyer commented that he has learned through presenting health-care power of attorney language to several thousand people that when he uses the word "incapacity," they don't know what he's talking about. Whatever the typical layperson believes incapacity is, it is not what the lawyer is talking about. When the lawyer asks a layperson who's doing estate planning, "Do you know what it means to be incapacitated?" the layperson gets a fuzzy look on his or her face, and when trying to describe it, more or less describes being unconscious.

So, when lawyers advise a client that they need to do planning in case the client is incapacitated, there is a good chance the client is not thinking of being in a state where he or she is potentially conscious, but unable to properly respond to making health-care and/or financial decisions. The word "incapacity" does not communicate to the client what the lawyer is thinking. Lawyers are talking about a person who cannot appreciate and understand the consequences of a decision or an act.

The general public, typically, does not understand incapacity in that manner. Therefore, when lawyers try to talk to them about making a power of attorney that would deal with their incapacity, they have a hard time imagining anything but the rarest of occurrences that could possibly happen to them that would cause them to be unconscious.

Therefore, it's very important for the lawyer who's working with clients to take the time and effort to explain that, legally, the idea of mental incapacity means being unable to properly control assets and/or health-care decision making, and that the situation can come up through an accident, an illness, or a long-term degenerative disease, such as any of the many types of dementia, which includes, of course, Alzheimer's disease.

It is really up to the lawyer to educate the client when going through a power of attorney form, because most clients actually think that the possibility of being incapacitated is rare, but the incidents of incapacity are, of course, much higher than they imagine.

Advance Directives

Advance directives are documents such as the living will, power of attorney for health care, power of attorney for property, and the do not resuscitate order (DNR). People primarily sign these forms because they want to avoid unwanted resuscitation and other "heroic measures" when there is no hope of recovery and returning to an enjoyable life.

These are very important documents when dealing with Alzheimer's disease because they are documents that allow people to communicate health-care preferences ahead of time so that when they lose the capacity to make or communicate their own decisions, their wishes can still be communicated.

It is important to remember that an advance directive has to be signed while a person still has the mental capacity to sign legal documents.¹

Simply filling out an advance directive is not enough, though. Later in this chapter, there will be a discussion about the difference between a powerful health-care power of attorney and a powerless health-care power of attorney.

For example, even if a client has a standard health-care power of attorney or a living will and gets to the point where he cannot swallow, the medical professional will tell the client's family that the condition is not terminal, but "he is going to die if you don't feed him." This puts a tremendous amount of guilt on the family if they don't know the client's wishes, and they will probably say, "Well, I guess we should put in the feeding tube." Now, because the client doesn't have a qualifying condition in his advance directive, even if he signed the normal statutory power of attorney or living will, no one is going to take action to stop the doctors from putting in a feeding tube. Even if the client never wanted to have a feeding tube in that situation, he will end up with one because he does not have a qualifying condition.

Practice Pointer: No One Knows It All

Rick Law admitted in the book's introduction that when his clients Luise and Bob came into his office dealing with dementia issues, he was not prepared to help them. He did not yet possess the tools to deal with their issues.

Practice Pointer: Be Familiar with Statutory Definitions

Very few lawyers know it all within the context of health-care powers of attorney. Most people, including the majority of lawyers, take advance directives for granted.

Every phrase and many words used within a health-care power of attorney are legal terms of art for which many paragraphs of defining language can be found within the empowering state legislation. Lawyers should read and be familiar with the statutory definitions of the words and phrases within any form of health-care power of attorney provided to clients.

The goal of this chapter is to teach lawyers how to get the right advance directive in place for clients so that when the Alzheimer's disease advances, clients will get the end-life treatment that they desire.

What Can Happen Without an Advance Directive?

If a client does not have a living will and has not created a power of attorney and the Alzheimer's disease has progressed to the point where the client is no longer competent, lawyers will find themselves in court attempting to convince a judge who the proper people are to represent the client. The client could face a lengthy, expensive, and embarrassing court hearing to determine competency.²

Worse yet, if the client is determined to be incompetent, another hearing will be held and the court will appoint a conservator to handle the client's financial affairs, and/or a guardian will be appointed to tend to the client's personal and health-care needs.³ (Conservator and guardians are discussed in more detail in chapter 6.)

While most states' laws encourage the courts to appoint family members as conservators and guardians, court involvement can be expensive and may impose cumbersome supervision on the client and the conservator and guardian.

In some cases where the incapacitated patient is in the hospital and does not have a living will or a power of attorney, the attending physician may appoint a surrogate decision maker who would then be authorized to make health-care decisions for the patient. These decisions include whether to forgo life-sustaining treatment. The order of priority for being appointed a surrogate decision maker varies from state to state, but is generally similar to the example below from Illinois:

(1) the patient's guardian of the person;
(2) the patient's spouse;
(3) any adult son or daughter of the patient;
(4) either parent of the patient;
(5) any adult brother or sister of the patient;
(6) any adult grandchild of the patient;
(7) a close friend of the patient;
(8) the patient's guardian of the estate.⁴

The Illinois statute states that health-care providers have the right to rely on any of the above surrogates if the provider believes after reasonable inquiry that neither a health-care agent under the Powers of Attorney for Health Care Law nor a surrogate of higher priority is available.⁵

Many older adults have told their lawyers stories of doctors and/or hospital staff that have ignored the refusal of life-prolonging care wishes of a now-deceased loved one. These individuals stated that they had insisted that their loved one did not want life-prolonging treatment, but nonetheless a doctor ordered feeding tubes, ventilators, and other life-prolonging measures. Recent studies confirm this lack of regard for patients' preferences in life-sustaining treatment decisions by doctors and hospital staff.⁶

A 2008 study reviewed life-sustaining-treatment decisions that occurred between hospital medical staff and their patients and/or their health-care agents under advance directives.⁷ The conclusion of the study is frightening. "Despite patients' wishes, the indiscriminate use of technology and the lack of communication between patients and health care providers have been shown to result in unnecessary pain and suffering for patients."⁸ Additionally, according to the study, the medical costs of prolonging a dying patient's life via artificial ventilation and intensive care often range between $11,000 and $36,000.⁹

Fortunately, there are ways to prevent "wrongful resuscitation" from happening. To avoid wrongful resuscitation, lawyers should do the following:

• Create a written advance directive such as a health-care power of attorney, living will, and/or a DNR in appropriate circumstances;
• Insist that the client's advance directives are placed in all of his or her medical records and that the physician is well aware of the existence of such documents;
• Advise the client

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