Newly Posted Article - "Perspectives on Competency and Decision-Making By and For People with Alzheimer's Disease"
[July 7, 2008]
Donald N. Freedman

Effective legal counseling and representation of an individual with Alzheimer’s disease or a related disorder presents the attorney with extraordinary challenges. Perhaps most notable, in the context of the maintenance of the attorney-client relationship, is the likely diminished capacity of the client to make or communicate decisions in connection with representation.


The Ethical Background

"When a client’s ability to make adequately considered decisions in connection with the representation is impaired, whether because of minority, mental disability or for some other reason, the lawyer shall, as far as reasonably possible, maintain a normal client-lawyer relationship with the client." Massachusetts Rules of Professional Conduct, Rule 1.14(a)

"The normal client-lawyer relationship is based on the assumption that the client, when properly advised and assisted, is capable of making decisions about important matters. When the client is a minor or suffers from a mental disorder or disability, however, maintaining the ordinary client-lawyer relationship may not be possible in all respects. In particular, an incapacitated person may have no power to make legally binding decisions. Nevertheless, a client lacking legal competence often has the ability to understand, deliberate upon, and reach conclusions about matters affecting the client's own well-being. Furthermore, to an increasing extent the law recognizes intermediate degrees of competence. For example, children as young as five or six years of age, and certainly those of ten or twelve, are regarded as having opinions that are entitled to weight in legal proceedings concerning their custody. So also, it is recognized that some persons of advanced age can be quite capable of handling routine financial matters while needing special legal protection concerning major transactions.” Rule 1.14(a) Comment 1.

"The fact that a client suffers a disability does not diminish the lawyer's obligation to treat the client with attention and respect. If the person has no guardian or legal representative, the lawyer often must act as de facto guardian. Even if the person does have a legal representative, the lawyer should as far as possible accord the represented person the status of client, particularly in maintaining communication.” Rule 1.14(a), Comment 2.


Perspectives

The ethical mandate to maintain, as far as reasonably possible, a normal client-lawyer relationship with a client with a disability thus obliges the attorney to assess and where practicable enhance the capacity of the individual to make decisions in connection with representation. To meet this obligation, the attorney must begin with a basic understanding of the disease, particularly in relation to decision-making; obtain an appreciation of client competency; and accommodate the attorney-client relationship so as to maximize the client’s participation in decision-making.

The Impact of Alzheimer’s Disease on Capacity to Make Decisions

Alzheimer's disease (AD) is a degenerative and terminal brain disorder. It is characterized by accumulations of proteins in the brain – “plaques” in the spaces between nerve cells, and “tangles” inside of nerve cells. There is no known cure and no consensus on causation. Alzheimer’s is a disease and is not a part of normal aging.

Alzheimer’s is the most common source of dementia, the significant loss of intellectual abilities such as memory, attention, orientation, judgment, language, and also motor and spatial skills, severe enough to interfere with social or occupational functioning. Alzheimer’s most often afflicts individuals over 65, but can also have an earlier onset. In its early stages, short-term memory loss, shown as a difficulty to remember recently learned facts, is the most common symptom. While the presentation varies in each individual, later symptoms often include confusion, anger, mood swings, language breakdown, long-term memory loss, and the general withdrawal of the sufferer as his or her senses decline. Eventually, minor and major bodily functions are lost, leading to death. The duration of the disease is between 5 and 20 years.

To communicate with and counsel people with Alzheimer’s, the attorney must be aware of the array of symptoms that he or she may encounter. Only with this awareness can the attorney assess capacity and make the accommodations necessary to engage the client to the maximum extent possible. Even more basically, what does the law mean by competency in this context? What are the attributes of competency, and decision-making in general?

Let’s start with what to expect from Alzheimer’s, focusing on dementia. Dementia causes many problems for the person who has it and for the person's family. Many of the problems are caused by memory loss. Some common signs of dementia are listed below. Not everyone who has dementia will have all of these signs.

•Recent memory loss. All of us forget things for a while and then remember them later. People with dementia often forget things, but they never remember them. They might ask you the same question over and over, each time forgetting that you've already given them the answer. They won't even remember that they already asked the question.

•Difficulty performing familiar tasks. People who have dementia might cook a meal but forget to serve it. They might even forget that they cooked it.
•Problems with language. People who have dementia may forget simple words or use the wrong words. This makes it hard to understand what they want.

•Time and place disorientation. People who have dementia may get lost on their own street. They may forget how they got to a certain place and how to get back home.

•Poor judgment. Even a person who doesn't have dementia might get distracted. But people who have dementia can forget simple things, like forgetting to put on a coat before going out in cold weather.

•Problems with abstract thinking. Anybody might have trouble balancing a checkbook, but people who have dementia may forget what the numbers are and what has to be done with them.

•Misplacing things. People who have dementia may put things in the wrong places. They might put an iron in the freezer or a wristwatch in the sugar bowl. Then they can't find these things later.

•Changes in mood. Everyone is moody at times, but people with dementia may have fast mood swings, going from calm to tears to anger in a few minutes.

•Personality changes. People who have dementia may have drastic changes in personality. They might become irritable, suspicious or fearful.

•Loss of initiative. People who have dementia may become passive. They might not want to go places or see other people.


Competency and Capacity

What does the law mean by competency? What are the attributes of competency? Of decision-making in general?

Given the complexity of the matter, it is our premise that the concept of “decisional capacity” is more useful than “legal competency” for the professional working with individuals with Alzheimer’s disease (or other conditions affecting judgment). Drawing from the wide legal and non-legal literature on the topic, a number of abilities are suggested as underlying decisional capacity:

•To understand the individual’s role in the decision-making process; that is, that the individual has a choice.

•To recognize the general quality of personal relationships, e.g., in dis¬tinguish¬ing between relatives, friends and strangers.

•To have a general appreciation of the nature and extent of one’s financial resources.

•To distinguish between short-term and long-term needs.

•To formulate short-term and long-term objectives.

•To possess the requisite basic cognitive skills to receive, store, recall and process information, including one’s own past experiences, as necessary to plan to reach objectives to meet needs.

•To apply past experience to new situations.

•To appreciate the relationship between one’s actions and the results sought, that is, between cause and effect in the context of decisions to be made, taking into account side effects and the risk of an altogether adverse outcome.

•To appreciate the implications of alternative courses of action for one’s objective future, as well as one’s subjective goals and values.

•To weigh the advantages and disadvantages of alternative courses of action.

•To keep facts in mind and to maintain stable choices long enough to be effectively implemented.

•To communicate decisions effectively, whether through non-verbal or verbal means.

•To withstand undue influence by others.

Competence and incompetence may be situational as well as global. A given individual may be able to understand and make decisions in some respects, but no others. For example, an individual may be able to manage day-to-day with most requirements for daily living, but not have the ability to make meaningful decisions about his or her medical care. An individual may be incapable of making decisions on financial matters, but understand enough of what is involved in signing a health care proxy, durable power of attorney or Will to render the signing valid. Think of a sliding scale of capacity, taking costs, risks and benefits into account.

It is important to recognize that Alzheimer’s disease does not exist in a vacuum. As global is its potential impact, many other aspects of the individual’s life may also have a bearing on decision-making capacity. For example, competency may have emotional as well as cognitive components. While an individual may have the capacity to evaluate the facts of a given situation, we really cannot consider her to be competent if her decision-making is ultimately the product of delusions. That is the easy case. But what of the more commonly encountered situation of the elder individual who indicates that she will go along with whatever a child, or her doctor, or her attorney, says? Where a real or imagined fear of loss of a relationship motivates a decision, rather than any sense of balanced self- and family interest? Where depression, rather than capacity, inhibits the individual’s participation in decision-making?

There is also the reality that clients will often present themselves in circumstances of panic and fear. Focused on an immediate crisis, they may initially be unwilling or incapable of adopting broader perspectives that may be critical to an optimal outcome. The client may be depressed or overly excited, dreading the personal and financial ramifications of illness for himself or herself, the spouse and family. He or she may be resigned to a bad outcome to the point of near-paralysis. Family pressures are frequent: in whose interest is planning being undertaken? At the expense of whose autonomy? Dynamics between spouses, and among parents and their children are always complex, in the most positive of relationships. Unfortunately, many relationships are built not on mutual¬ity of respect, but on fear, enforced dependency, co-dependency, and even emotional or physical abuse. Intra-family difficulties are often particularly acute in situations involving re-married couples, where the children of one spouse may feel little commitment to the other.

There are also what might be called circumstantial components to capacity. An individual in familiar surroundings may be able to function adequately in decision-making, whereas the same individual, newly admitted to a hospital or nursing home, may be utterly stressed and confused. The time of the day to meet with the client may be important. Late afternoon can be a terrible time of confusion for people with Alzheimer’s – a common phenomenon called sundowning or sunsetting.

No medications can cure or reverse the course of the overall disease, but some have been shown to have a short-term effect on memory, cognition, stress and other psychological symptoms. A person on effective medication may be more “competent” than one off his medications.

Understanding may be affected by fatigue or the occurrence of an unpleasant or disconcerting event immediately before the meeting.

Some factors may directly impinge on the individual’s capacity for deci¬sion-making, but do not relate to competency at all, in a legal sense, for example, lack of experience, knowledge or information; impairments in vision, hearing or language; or impact on cognition from overuse of medications or substance abuse. For example, people with Alzheimer’s tend to be old, and people who are old are more likely to have hearing problems.

Cultural perspectives on autonomy and on the relationship be¬tween the individual and the family may substantially affect decision-making in ways that may not be apparent to attorneys drilled in the rugged individualism of American legalisms.


Enhancing Capacity to Make Decisions: Accommodations

With many individuals with Alzheimer’s, we may move too quickly to abandon hopes of the individual participating in decision-making, at least in some domains and to some degree. As with anyone, participation by the individual with Alzheimer’s depends in part on his or her own functional competencies, interest, and verbal communication skills. The presence of even a severe degree of disability does not in itself put the issue of participation to rest. To the contrary, the more severe the disability, the more responsibility devolves to the attorney to take affirmative steps to facilitate participation -- to make, in the terms of the Americans with Disabilities Act, “reasonable accommodations” to the individual’s areas of incapacity, and thus to enhance his participation.

Sometimes, a client will require only an extra measure of preparation, patience, common sense, a willingness to engage and follow-up, without being patronizing. Beyond that, the nature and extent of possible accommodations are limited only by sensitivity and creativity. A few suggestions:

•Find out what you can about the presentation of the client’s illness in advance of the initial meeting. Ask whether any special accommodations should be made for the meeting due to the client’s special needs. Send materials in advance of meetings when feasible.

•Think about the physical setting for meetings in which the individual is most likely to feel comfortable and focused -- the neutral/professional ground of the office, or the familiar ground of the home. Clients with mobility problems may require shorter meetings, special transportation arrangements, or sessions other than at the office - at home, or in the hospital or nursing home.

•When scheduling a meeting, try to avoid days in which the client is already scheduled for medical appointments or other activities that may leave him fatigued or stressed in anticipation. Ask about the optimal time of the day for the client to function cognitively and emotionally, since this may make an enormous difference in the client’s stamina and ability to participate.

•Think about participants for the meeting. Give the client the option to involve trusted family members or friends in any meeting (although also make it clear at the outset that for ethical reasons you must at some point spend time with the client alone, as well.)

•Work from a written agenda where possible. Number your points. Engage the client by sitting directly across from him, rather than at the head of the table. Maintain eye contact. Emphasize to the client as well as family members present that you are representing her alone in the family, and that she alone is the decision-maker. Do not overestimate the impact of expectations.

•Listen to the client’s narrative. Be attuned to his voice, values and sense of relationship with family members. Communicate in plain and simple language, in short sentences. Break information into meaningful chunks. Speak slowly. Avoid jargon, acronyms and legalese. Stay focused. Avoid information overload. Avoid bringing up tangential matters. (That is, suppress the temptation to show off the breadth and depth of your knowledge.) Encourage questions. Invite discussion. Ask for feedback, illustrations and restatement of information. Repeat information as needed.

•The client with Alzheimer’s may well have great difficulty understanding and remembering factual and technical information. Do not give up on communication in these situations, however. Psychologists say that the capacity of people with Alzheimer’s to communicate non-verbally, by expression, motion, and emotion, can persist effectively even after verbal communication is seriously impaired. Try to understand more than the words, or lack of words, of the client. And try to communicate in a way that gives the client a sense of assurance that you understand his needs and are committed to helping him – in short, that the matter is under control.

•Whenever feasible, reduce evaluations, findings and recommendations to writing, or to audiotape, to permit the client to review them as often as desired to facilitate recollection and understanding. Letting the client know, at the start of the meeting, that you will do this can relieve pressure on the client to remember details or take notes, and thus make client participation in the meeting more effective.

•If the client also has a visual impairment, send the client written materials in larger print fonts. Give the client ample time to read written materials, or read or summarize them aloud if necessary. Be prepared to provide ample follow-up communication to ensure sufficient understanding.

•If the client has a hearing impairment, position yourself for best effect to optimize hearing. Keep your lips visible. Enunciate clearly. Speak up as necessary, and speak slowly.

•Maintain a normal on-going relationship with the client, to the extent possible, particularly in maintaining communication.


Conclusion

A special kind of impediment to full client participation is often pre sent in situations involving older (or disabled) clients. It is not based on any objective characteristic of the client, but rather on the attorney’s attitudes, perceptions and expectations of the client. These expectations, often communicated implicitly, can in themselves have a substantial bearing on the quality of the client’s participation in decision-making. An assumption that the client is less capable of understanding and acting in his or her own best interests may be the greatest single impediment to the client participating fully in counseling. Prejudices and preconceptions regarding age and disability abound. Age and diagnosis do not determine physical, mental or emotional status. Physical status does not determine mental status. Diminished mental capacity does not eliminate the possibility of significant client participation and decision-making. Older persons and persons with disabilities do not always want to surrender responsibility for management of their affairs to others, regardless of whether others might manage them better. They do not always prefer physical security, or comfort, or social involvement, to continued autonomy and independence even at significant cost to these interests. The ethical mandate to “Know Thyself” is at least as significant for the attor¬ney as the physician.

It is essential for the attorney, before undertaking estate and entitlements planning on behalf of a client with Alzheimer’s disease, to make certain commitments. Be sensitive to the client’s special personal circumstances and be prepared to accommodate office practices to maximize opportunities for the fullest possible client participation. Achieve and maintain familiarity with the range of medical, residential, and social services and programs that may be appropriate to the needs of the particular client. Offer the sup¬port and guidance necessary to assist the client in the intelligent formulation and realization of his or own goals. And lastly, utilize the available tools zealously and creatively within accepted principles of ethics and advocacy to assist the client in achieving his or her goals.



Footnote: Information on Alzheimer’s Disease is drawn from multiple sources, including the website of the National Institute on Aging of the National Institutes of Health, the Alzheimer’s Association, the Medlineplus.com service of the US National Library of Medicine and the National Institutes of Health, Wikipedia.com, Medterms.com and the Diagnostic and Statistical Manual for Mental Disorders of the American Psychiatric Association. The material on the symptoms of dementia is from the website familydoctor.org of the American Academy of Family Physicians.

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