When Cognitive Decline Changes People, Should We Respect Their New Desires? 

Q. I read a fascinating piece in The New York Times Magazine recently about a woman named Diane Norelius, who had dementia. As her cognitive decline began to alter who she was, her adult daughters and her boyfriend wound up in a bitter dispute over which version of her should get to decide what she wanted. This really made me think. Whose decisions matter, the then-us or the now-us, and how do we determine when dementia takes away our ability to make our own decisions, even if they’re bad? Sounds like an ethical and legal dilemma to me. What is your legal take on this situation? Thanks for your help!

A. I read the same article and also found it quite fascinating. In the article you describe, Diane Norelius had a happy family life with her husband of 53 years and three children. After her husband passed away, she was diagnosed with dementia. She was still able to speak clearly and coherently as her disease progressed, which led many to believe that her dementia was not as advanced as it was. She had a boyfriend who appeared to care about her, but who relied on her financially. Her daughters were convinced that her boyfriend was financially abusing her and hired lawyers to gain control of her finances and be granted guardianship over their mother. Diane had her own desires that seemed to differ from what her daughters wanted. But was she competent enough to make decisions for herself? Would what she desires now be the same as what she would have wanted when she was in her right mind? And which desires should take precedence? You can read the entire article here.

Has the Person with Dementia Lost the Right to Autonomy? 

The article about Diane referenced a well-known case that addressed the matter in question: When cognitive decline changes people, should we respect their new desires? 

In The New York Times article they give an often cited example about a woman named Margo with Alzheimer’s disease. Margo is initially discussed in a 1991 article in The Journal of the American Medical Association (JAMA), by a physician named Andrew Firlik. Margo, according to the article, was 55 and had early-onset Alzheimer’s disease and couldn’t recognize anyone around her, but she was very happy. 

Margo spent her days doing the things she enjoyed most. She enjoyed basking in the sun, eating peanut butter and jelly sandwiches, listening to music, and painting. She read the same mystery novels day after day, because the mystery always remained mysterious and enjoyable due to her fading memory. “Despite her illness, or maybe somehow because of it,” Firlik wrote, “Margo is undeniably one of the happiest people I have known.” 

A couple of years after the JAMA article was published, philosopher Ronald Dworkin revisited the happy Margo in his 1993 book, “Life’s Dominion.” In her Advance Medical Directives, which were written in the early stages of her Alzheimer’s when she was still considered competent, Margo indicated that she prohibited the use of any medical procedures, whether invasive or not, aimed at prolonging her life if she is ever in a demented state.  

As her dementia progressed, Margo contracted pneumonia and desperately needed antibiotics in order to survive, but Margo at Stage 1 issued an Advance Medical Directive prohibiting their use. But, in Margo’s case, she is pleasurably demented. What was an ethical doctor to do? Should he kill now-Margo, even though she was happy, because then-Margo would have wanted to be dead? 

With the now-Margo being so content in her current state, doesn’t it harm her to act on an Advance Medical Directive that she issued prior to her advanced Alzheimer’s, and cannot now either affirm or disavow?  In Dworkin’s view, it was then-Margo whose wishes deserved moral weight. Here’s why: In his book, he makes a distinction between two kinds of interests: “experiential” and “critical.” An experiential interest was “reactive and bodily,” with an example being the pleasure of eating ice cream. A critical interest was “much more cerebral”; it reflected the character of a person and how she wanted her life to be lived. In the case of advanced Alzheimer’s disease, Dworkin argued, there is a danger that critical interests will be considered over experiential ones. He stresses that the critical interests are the ones that deserved to be satisfied, as those are the ones that give human life its meaning and its dignity. According to Dworkin, “(a) person was respected if she was helped to live out her chosen course, not if her life trajectory was allowed to be derailed by the amnesiac whims of her diseased self.” 

Some philosophers have devoted themselves to reconsidering Margo. They accuse Dworkin of holding too limited a view. Couldn’t a life of tiny pleasures be meaningful, even if it wasn’t part of the original plan? Critics have asked why we should give precedence to the decisions of a person who “no longer exists” over the choices of the person who is sitting before us, here and now. What authority could the then-self possibly have over the now-self? Another question: when exactly did the now-self cease to become the then-self? Was it a result of the dementia, as people with or without cognitive decline are constantly changing beings?  

When Can Someone Be Declared Legally Incompetent? 

The New York Times Magazine article describes how many adult children are surprised to learn that a diagnosis of dementia, on its own, does not disqualify a parent from making big decisions. The article very accurately points out that “(t)he adult child assumes that the first pronouncement from a doctor — that an older parent is cognitively impaired — immediately flips some kind of decisional switch, rendering the parent incompetent to choose.” But this is simply not the case; only a court of law can declare someone legally incompetent. Someone can of course be incompetent to sign certain documents before they are deemed legally incompetent, and this is something that we elder law attorneys deal with every single day when determining whether the client or potential client in front of us is competent enough to sign a given document. It is also worth noting that different types of legal documents have different level of capacity requirements.  

As you can imagine, determining whether someone is competent to make their own decisions at a given point in time is a complicated process.  In most situations, if a loved one is unable to make decisions for him or herself, the court may appoint a substitute decision maker, often called a guardian. A guardian is only appointed as a last resort if less restrictive alternatives, such as a power of attorney, are not in place or are not working. 

The standard under which a person is deemed to require a guardian differs from state to state. Generally, the court looks at a number of factors in determining the need for a guardian or conservator (when money is involved), including the ability to: 

  • Understand important medical or financial information; 
  • Grasp the importance of medical and financial decisions and the effect of those decisions;  
  • Make reasonable decisions using the information available; 
  • Exercise his or her capacity to communicate decisions in a consistent manner; and 
  • Maintain a safe environment. 

A person cannot be declared incompetent simply because he or she makes irresponsible or foolish decisions, but only if the person is shown to lack the capacity to make sound decisions. For example, a person may not be declared incompetent simply because he or she spends money in ways that seem odd or impulsive or wasteful to someone else. Also, a developmental disability or mental illness is not, by itself, enough to declare a person incompetent. 

Keep in mind that the standard for whether someone is legally incompetent to care for themselves is not always the same as whether they have the capacity to make legal decisions. Proper execution of legal documents generally requires that the person signing have sufficient mental capacity to understand the implications of the document. 

Wouldn’t a Test for Dementia Be Enough to Declare Someone Incompetent? 

As accurately explained by the New York Times article, “(s)tandard cognitive tests can be useful pieces of evidence — a very low score would suggest, but not prove, that a person may be incapable of medical decision-making — but these tests are meant as screening tools and do not specifically measure decision-making ability. As such, they offer little guidance to caregivers who are struggling to safeguard a loved one’s autonomy while protecting her from her compromised self: Where do we draw the line for a woman with dementia? How do we know when she has crossed it?” 

There has Been Lots of Change in Legal Capacity 

According to my colleague Charlie Sabatino, former director of the American Bar Association’s Commission on Law and Aging, within the legal world, “there has been, in the last several years, a real sea change in thinking about capacity. The real die-hard view is that you never lose capacity.”  The New York Times Magazine article describes how, “(i)n this newer view, a person can occupy an infinite number of spaces on a gradient from legally capable to incapable, with the far end of the spectrum reserved for people stuck in comas or vegetative states. Short of that extreme, a person will almost certainly retain the ability to choose some things for herself, even if she can’t choose everything. A person might, for instance, be legally incapable of carrying out a complex property transaction but capable of managing a small bank account.” 

The article correctly continues… “(t)oday even a legal decision made in a fleeting moment of lucidity — a few minutes of clarity, pressed between hours or days of cognitive shadow — counts under the law. Even a decision that is later forgotten — like appointing a new power of attorney — counts.” 

Conflicts about legal capacity are common in the context of estate planning. It is not uncommon for a person with early-stage dementia to write a new will or trust, or revise an old one, and then for an adult child to later challenge the change in court. The lawsuit that results will hinge on whether the impaired parent had the appropriate level of decision-making capacity at the moment she signed her name. 

The legal system in this case is the ultimate ruler, but lawyers and courts always struggle with the reality of medical uncertainty. Different doctors regularly come to different conclusions with respect to whether a person who signed a specific document had the requisite capacity at the moment of signing. These legal challenges are often made years after a document is signed, typically after death, so doctors acting as expert witnesses are trying to determine what someone’s capacity was at a prior point in time based on prior medical exams and tests and personal testimony, typically by witnesses who have something to gain in the process.  

Plan Ahead for Dementia 

Our 4 Needs Advance Medical Directive® contains a dementia directive that addresses the changes in cognition that occur as dementia progresses, as well as the changes in goals of care that patients might want along the continuum of the disease. For instance, to address changes in the disease, the dementia directive lists: 

  • cognitive milestones of dementia grouped into 4 stages;
  • developments that typically occur at each stage;
  • determining whether the person with dementia would want full efforts to prolong his or her life, treatments to prolong life, care where he or she is living, or comfort-oriented (non-life prolonging) care only;
  • deciding whether to use feeding tubes in late-stage dementia.

An increasing number of people have views about the care they would want if dementia were to occur, and every effort should generally be made to honor those wishes, but the excellent New York Times article discussed above brings to the forefront the question of whether a Dementia Directive will be honored if and when the time comes, if your future self changes your mind about the care you want or don’t want. Still, it is important to complete a Dementia Directive such as the one that is part of our 4 Needs Advance Medical Directive® before you develop signs of dementia. This is because even with early cognitive impairment, patients may lose the ability to complete complex planning about future medical decisions. 

If you or any of your loved ones have not done Incapacity Planning, Long-Term Care Planning, or Estate Planning (or had your Planning documents reviewed in the past several years), now is a good time to plan and get prepared! Among other services, we offer peace of mind through our four levels of lifetime protection planning:    

Level 1 — Incapacity Planning is about protecting your assets from lifetime probate, also known as guardianship and conservatorship. Everyone over the age of 18 should have this type of planning in place.    

Level 2 — Revocable Living Trust Estate Planning is about protecting your assets from lifetime probate and after-death probate, keeping in mind that using only a Last Will and Testament to transfer your assets at death forces your estate through the nightmare of after-death probate. All individuals and families who have children and/or financial assets should strongly consider Level 2 Planning.    

Level 3 — Living Trust Plus® Asset Protection Planning provides protection from probate, lawsuits, home care, and assisted living expenses by allowing access to Veterans Aid and Attendance benefits, and nursing home expenses by allowing access to Medicaid. This type of planning is done by clients who are typically retired and either still healthy or have recently been diagnosed with (or have a family history of) dementia or some other illness that is likely to result in the future need for long-term care.     

Level 4 – Life Care Planning, Medicaid Asset Protection, and Veterans Asset Protection provides comprehensive planning and filing services, often at times of crisis, though this type of planning can be done anytime someone is beyond the first step of the Elder Care Continuum aka Aging Continuum.     

If you have not done the appropriate level of planning, or had your planning documents reviewed in the past several years, please call us today:    

Northern Virginia Elder Law Attorney: 703-691-1888           
Fredericksburg, VA Elder Law Attorney: 540-479-1435           
Rockville, MD Elder Law Attorney: 301-519-8041           
Annapolis, MD Elder Law Attorney: 410-216-0703    

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About Evan H Farr, CELA, CAP

Evan H. Farr is a 4-time Best-Selling author in the field of Elder Law and Estate Planning. In addition to being one of approximately 500 Certified Elder Law Attorneys in the Country, Evan is one of approximately 100 members of the Council of Advanced Practitioners of the National Academy of Elder Law Attorneys and is a Charter Member of the Academy of Special Needs Planners.

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