Fashioning an advance directive for dementia

We have discussed previously (here and here) the topic of an advance directive or special instructions regarding our future selves, in the event that we develop dementia and do not want to live through the disease to the end.  This post lays out a process for making such a directive to be used when or if we become unable to make our own views known because of mental incapacity.  If you are willing to live with dementia through the end of the disease, this post will not be of use to you.

By the time the US Supreme Court acknowledged the importance of making end-of-life wishes known clearly and in sufficient detail, most states had adopted a form for that purpose, but none of those forms make special provisions for detailing a person’s wishes concerning dementia.  That is not a problem, however, because we can make our wishes about future medical care known in writing, even in the case of dementia, for use if we become unable at any time to express those wishes.  That is what advance directives are for, whether written on state forms or entirely in our own words.  The only caveat is that we cannot be sure that courts will uphold such dementia directives because none have been fully litigated.

State-provided advance directives

The state-provided advance directives usually offer two or more scenarios that we might face and allow us to express our wishes for each scenario.  Some health care directives discuss one’s wishes to deal with a terminal medical condition and an irreversible condition.  Some are more detailed than others.  Some state forms provide a place to designate a surrogate to make sure our wishes are honored by medical personnel if we are unable to express those wishes, or to decide what to do about circumstances we did not, or could not, anticipate.  Some states provide a second form on which to designate a surrogate.

The state health care advance directives have various names:  Directive to Physicians, Living Will, Advance Care Plan, Advance Directive for Health Care, Advance Health Care Directive, Healthcare Directive, or something similar.  Virtually every state health care advance directive (or Living Will) has a section where you may add any additional or special instructions.  If you are using a state form, this is where you can include something like “I have attached to this form special instructions that I want followed in the event I have dementia.”  You may want to add an additional statement so that all will know that the dementia statements are binding, something like “These special instructions are incorporated in this directive and made a part hereof as though written directly in the document.”

The American Bar Association has a generally reliable and user-friendly website at which can be found advance directives for nearly all states, both the health care directives and the form for appointing a surrogate.  In addition, many organizations such as hospitals, Funeral Consumers Alliance affiliates, medical associations, state health departments, and hospice programs provide forms for the state where they are located.

Using state-provided advance directive forms

Although, legally, a person does not have to use his or her state’s advance directive forms, there is one good reason to do so:  medical providers may be reluctant to accept an advance directive that is not on the state form.  The fact that we have a constitutional right to make our own advance directive might be of no consequence to medical providers, or they may not understand this right to make our own directive.  If a medical provider takes this position, it may be necessary for your surrogate to ask for assistance from a social worker or patient’s rights representative (in a hospital) or to litigate the issue, which can be both expensive and time-consuming.

If you want to add instructions for medical care to deal with dementia, you might want to use a dementia directive developed by others (as discussed below), or you may want to write your own.  As a precaution, whether you write your own directive or use one developed by someone else, having your signature acknowledged before a notary may prevent future disputes about its authenticity.  Acknowledgements for each state can be found here.

Your options before dementia takes away your decision-making capacity

If you do not want to live to the end stage of dementia, several courses of action are available to you while you still have sufficient cognitive ability to make your own health care decisions.  

1.  You can arrange to hasten your death by any of several methods found in The Peaceful Pill Handbook by Philip Nitschke and Fiona Stewart and in Final Exit, 3rd Edition by Derek Humphrey.

2.  You can seek the education and training resources of the Final Exit Network (FEN) to hasten your death using inert gas, but you must have the decision-making capacity and the physical ability to do so.  FEN’s Exit Guides do not physically assist in the process.

3.  You can hasten your death by voluntarily stopping eating and drinking (VSED), using the references previously discussed here and here.  See also the End of Life Choices New York advance directive about orally-administered food and fluids for dementia patients here.

A primary dilemma encountered by most people with these three methods of dying before reaching a point in dementia where they no longer have sufficient cognitive function to hasten their own death is deciding when they are approaching that point.  If you cause your death too soon, you may die when you still have some time left to enjoy life.  If you do not act quickly enough, you lose the ability to hasten your death.

Your options if dementia advances beyond your ability to act

If you don’t want to end your life when you may still have some enjoyable time left, you have some other options that can be used after you lose sufficient mental capacity or physical ability to act on your own.  You can describe in an advance directive the changes in cognition and behavior that will indicate that you have lived with dementia to the point that is far enough, and the goals of your health care should change.  Some examples are suggested in the next section.  Once you have reached this point, there are several options.

1.  You can direct that, if you have other significant health problems for which you are being treated, this treatment be discontinued and you be allowed to die from that condition, provided that you are given comfort care until your death.  For example, you may have atrial fibrillation or congestive heart failure.  If so, the treatments for those conditions could be stopped, though you should seek medical advice about what auxiliary treatments might be important to continue.  If you take a blood thinner, for example, to prevent stroke, you might want to continue that treatment in an effort to prevent being a stroke victim with dementia.  If you have a pacemaker, you might want it turned off.

2.  You can direct further that you not be treated for any new health problems that have the potential to end your life, such as renal failure, pneumonia, or heart failure.  When the primary medical treatment is stopped or new illnesses go untreated, you may be eligible for hospice services, which, in most cases, can assure that any subsequent pain or troubling symptoms are controlled.  Of course, palliative care should always be available, with or without hospice.

3.  Once you have reached the point of dementia where you want your death hastened, once again VSED may be an option.  This will require clear instructions and an assertive surrogate to assure that your wishes are carried out, though no one can guarantee that your wishes will be honored because no final court decision has been rendered on this issue in any US jurisdiction.  Hospice may be available, also, to assist with any untoward or unwanted distress or anxiety, and to provide needed auxiliary care quickly and efficiently to relieve those conditions.

4.  If medical conditions other than dementia begin to create physical pain or unnecessary suffering, palliative care may lead to sufficient sedation to make you unconscious.  This level of sedation may result in a hastened death, though that will not be its purpose.

What to say in your statement

If it is your decision not to live through the final stage(s) of dementia, you will need to describe in detail what conditions of your functioning will indicate that it is time to implement your additional and changed health care planning.  The following examples should give you ideas about what behaviors or dysfunctions might trigger your dementia directive:

• loss of cognitive ability to read and understand a newspaper
• loss of cognitive ability to make meaningful choices about food
• loss of cognitive ability to recognize and identify immediate family members (you may want to identify these people by their relationship to you)
• loss of cognitive ability to enter into contracts
• loss of cognitive ability to make medical decisions
• loss of cognitive ability to give consent to sexual activity with another
• loss of cognitive ability to write with comprehension
• inability to sleep through the night (a problem for many dementia patients)
• disruptive behavior more than a specified number of times in a 24-hour period (for example, yelling, cursing, unprovoked anger, hitting, spitting, or other assaultive conduct)
• consistent confusion for at least X weeks about where one is or what day it is
• inability to engage in conversations
• need for help choosing proper clothing for the season or the occasion
• increased risk of wandering and becoming lost
• need for round-the-clock assistance with daily activities and personal care
• loss of other abilities: to cook, feed oneself, dress, walk, sit, and swallow

Of course, based on your own research, you may choose other cognitive abilities or behaviors as triggers to change the course of your medical care and treatment.  You may want to specify the number of unwanted behaviors or losses of abilities after which your directive should be implemented so that caregivers know exactly when your directive should take effect.  You could also list only those abilities or behaviors that are most important to you and provide that after the loss of all listed abilities, or the onset of specified behaviors, your dementia directive should take effect.  Such specificity will help eliminate confusion.  

Concomitant with stopping most medical treatment that would keep you alive longer, as described in your directive, you should provide that you receive only comfort-oriented care; that is, care focused on relieving your suffering from pain, anxiety, or difficulty in breathing.  Such palliative care should be a part of all medical treatment you receive, regardless of your decision about ceasing curative or maintenance treatments.

A New York physician, Dr. Barak Gaster, published a Health Directive for Dementia last year and discussed it, with two other physicians, in an article published by the Journal of the American Medical Association.  You may find the directive useful in writing yours, or you may decide to use it exactly the way it is presented.  If you do write your own directive, have others read it and discuss it with you so that you can eliminate any ambiguities or unintentional misstatements.  Many people find it useful to discuss their health care plans with their physicians to receive feedback and to learn if the physicians will cooperate with the plans.

End of Life Washington has developed another approach to a dementia directive, which may be useful to you, also.  It can be found here.

Finally, it is essential to have an assertive, informed, and committed surrogate who understands your wishes.  This is the most important decision that you can make, after writing your own directive for dementia in the clearest terms possible, to assure that your health care decisions and directives are implemented in the way you intend.