THE POTENTIAL POWER OF ADVANCE DIRECTIVES IN GERO-PSYCHIATRIC PRACTICE
Helping People Avoid Heartache and Hurt by Planning for and Managing Future Care for Dementia and Chronic Mental Illness
The Problem: Aunt Helen’s Story
Those who work with older adults struggling with dementia or chronic mental illnesses have seen this happen too many times:
Family members report that Aunt Helen, who has a diagnosed dementia (or a chronic mental illness) has become increasingly agitated, or disoriented or delusional, or combative, or all of the above, and cannot be cared for at home (or in the assisted living facility or nursing home where she resides) and needs hospital level care. Helen clearly meets the criteria for placement in a psychiatric hospital, and could benefit from treatment there, but Helen clearly lacks the capacity to make an informed decision about hospital admission and mental health treatment. The family members are advised – correctly – that the only avenue available for getting Helen hospital level psychiatric care is to seek involuntary hospital commitment for Aunt Helen. The family members agree to file a petition for such commitment. Then, to their horror, they see Aunt Helen taken into custody by law enforcement officers – often in handcuffs, as required by safety protocols - and watch as she, and they, are subjected to procedures and proceedings that are intended to protect Helen’s rights but succeed mainly in stripping her of her dignity and making her family feel guilty, angry and confused as the “system” finally confirms what is obvious to anyone who sees Helen – that she needs to be in a hospital for treatment.
Advance Directives as One Answer
Is there a way to avoid this scenario? Until 2009, the answer was “no”. In that year the Virginia General Assembly changed the answer to “yes” by enacting amendments to the Health Care Decisions Act (Virginia Code Sections 54.1-2981 through 54.1-2996) that expanded the scope of advance directives to cover mental health care, including psychiatric hospitalization.
An advance directive is a document through which you can (1) appoint an agent to make health care decisions for you in the event that you become incapable of making informed decisions about your own care; or (2) give specific instructions about what health care you authorize, and what care you do not authorize, in the event that you become incapable of making your own decisions; or (3) do both – appoint an agent and give specific instructions in the event you later became incapable of making your own decisions about your health care.
Originally, the value of an advance directive that was most emphasized was that you could use it to give instructions about the care you wanted if you were ever in a “terminal” condition – where your death was imminent or you were in a persistent coma or similar condition (“persistent vegetative state”). This was often referred to as a “Living Will”. In subsequent years, increasing emphasis has been given to the fact that, through the advance directive, you can appoint an agent to make health care decisions for you (and also give instructions about your care) to cover not only end-of-life care, but any situation in which you need treatment but are unable to give informed consent to treatment (for example, following an automobile accident in which you are seriously injured and need treatment but are unconscious or otherwise unable to make decisions about that treatment). However, until 2009, the treatment that you could address in your advance directive did not include mental health treatment. In addition, if you, even in your incapacitated state, objected to treatment that was recommended for you, such treatment could not be given over your objection (even if the treatment was consistent with what you had set out in your advance directive).
That changed with the amendments to the Health Care Decisions Act (HCDA) in 2009. Those amendments, among other things, do the following:
(1) They include in the list of powers that you – at your option – can give your agent, the authority to give authorization for your mental health treatment, including psychiatric hospitalization.
(2) They allow you to give to your agent the power to authorize treatment over your objection after you have become incapable of making informed decisions about your treatment. (Often referred to as a “Ulysses Clause”.) They also allow you to specify what types of treatment are or are not included in this grant of power to your agent. (For example, you can specify that your agent does not have the authority to consent to any mental health care for you if you object to such care after becoming incapable of making informed decisions about that care.)
Changing Aunt Helen’s Story
What does this mean for future Aunt Helens, and for the rest of us (since, quite frankly, none of us is immune from the possibility of dementia or other mental illness later in our lives)? It means that, while we still have the capacity (and the HCDA presumes that every adult has this capacity), we can, through advance directives, appoint an agent who can make mental health care decisions for us (including hospitalization) and we can set out any instructions or limitations we wish to place on that agent and/or on our future health care providers regarding our care. In theory, at least, the terrible scenario described above for Aunt Helen could have been avoided entirely if, before becoming incapable of making informed decisions about her care, Aunt Helen had appointed an agent to make mental health care decisions for her (including hospitalization), and had specified that her agent’s treatment decisions could be followed even if she objected to those decisions after she became incapable of making her own decisions. (Note: you can give authority to your agent to make decisions over your objection only if a physician or licensed clinical psychologist certifies in your advance directive that your have the capacity to make that decision, and understand the consequences, at the time that you give that authority in your advance directive.) With such an advance directive in hand, Aunt Helen’s agent could have brought Helen to the psychiatric hospital when her condition deteriorated and could have authorized her admission and treatment there (if she otherwise met the criteria for admission) without any involuntary commitment process. Under current law, the agent can authorize psychiatric hospital care for a maximum of 10 days, after which an involuntary commitment has to be sought to authorize hospital care beyond that time (if the person is still incapable of making an informed decision about such care). This limitation helps to prevent misuse of the agent’s authority.
From Theory to Practice
The advance directive, then, can be a powerful tool in helping people plan for and manage future mental health care needs, and enabling them to avoid the traumas involved in involuntary treatment situations. The problem is that fewer than 15% of adults in Virginia have ever completed an advance directive for any aspect of health care, and it is likely that even fewer have filled out an advance directive that addresses mental health care.
The question for health care and social services professionals is this: How can we effectively help and enable people to use this powerful tool?
Psychologists at Duke University have carried out research on the effectiveness of “facilitating” psychiatric advance directives. (North Carolina law provides for a stand-alone psychiatric advance directive.) The Duke researchers’ facilitation involved making contact with individuals who had a diagnosis of serious mental illness, and explaining to these individuals how an advance directive might help them, and then meeting with them individually and helping them to fill out an advance directive. Approximately 70% of the individuals with whom they met completed an advance directive (compared with 3% of a group that simply received information about advance directives and how to find available resources.) In addition, those who did complete an advance directive showed, in the ensuing months and years, an increased investment in their treatment, a better relationship with their treatment providers, and fewer and less serious mental health crises. The University of Virginia, in collaboration with the Duke researchers, is now carrying out research on facilitated advance directives in community mental health settings in Virginia.
Forms that Fit Your Needs
The advance directive form being used by the University of Virginia in its research (a link to which is provided below) is a much more detailed form than the standard advance directive form, as it includes provisions for very specific instructions about various aspects of mental health care, including medications that the person does or does not authorize for treatment. This information is very valuable for persons who have experienced or are at risk of experiencing mental health crises and want to make sure that they have an effective plan of action in place for any future crisis. However, those of us who do not have a mental health diagnosis may not feel that we need to have this level of detail in our advance directive.
There are a number of advance directive forms in the public domain that are based on the HCDA. The “suggested” form from the HCDA is comprehensive (and 4 pages long), but may not be as helpful as other available forms in addressing “end-of-life” treatment issues. The Virginia Hospital and Healthcare Association (VHHA) has developed a simpler form that is only 2 pages long and does a better job with end-of-life issues, but it does not include a “Ulysses Clause” and provides no guidance or options in regard to choices about body and organ donation in the event of death (which can be very important to some people).
What To Do Now
There has been enough research, and experience in the field, to establish that, when people complete advance directives – for general health care, for mental health care, and for end-of-life care – there are major benefits for everyone involved, and better health care results. The challenge now is to build advance directives into our health care and social services infrastructure, and into general public awareness, to the point that people will complete them, and families and health care providers will rely upon them, on a regular and widespread basis.
Extended advance directive form, with specific instructions regarding mental health treatment issues: click here .
“Standard” advance directive form, based on Va. Code Section 54.1-2984: click here.
“Short” form developed by VHHA: click here. For the attachment click here. (For more explanation and information about the Ulysses Clause, click here.)