One of the tragedies of the medical industry during the start of the 21^st century is its inability to make significant progress in the diagnosis and treatment of dementia. Billions of dollars have been spent on research over the last 20 years, but we are only baby steps closer to understanding and conquering the disease. In many ways, the same is true about how dementia is dealt with in our health care documents.

There are many forms of dementia; the most common of which is called Alzheimer’s disease. Although there are different defining characteristics for different types of dementia, there are several characteristics that are universal, including that dementia is progressively debilitating, irreversible, incurable, and fatal.

Illinois, like most states, has developed a document that allows one to name an agent to make medical decisions for them if they are incapacitated and unable to make their own decisions. In Illinois, the statutory document is called a Power of Attorney for Health Care. The statutory form also includes some general options relating to life-sustaining treatments.

While the standard Power of Attorney for Health Care may be sufficient for the typical emergency and health care decisions, it does not attempt to address the complex issues resulting from a diagnosis of dementia and the progressive loss of one’s abilities and mental facilities. Recent amendments meant to simplify the document make this even truer.

The beginnings

The mother of a client of mine had dementia and suffered through the downward spiral of losing her memories, losing her ability to comprehend her situation, and losing her ability to take care of herself. My client was deeply distressed by his mother’s suffering and the suffering of her family and friends, and he did not want his life to end the same way if dementia eventually struck him. Together, we sat down and were able to put his feelings and concerns in writing. It took the form of an advance care directive, which was a supplement to his Power of Attorney for Health Care. In it, he set forth his wishes about the care he wanted to receive if he, like his mother, found himself in the later stages of dementia.

While helping with my client’s advance care directive, I looked at a variety of forms attempting to address the many issues related to dealing with the complex problems and effects of dementia. Most dealt with relatively precise fact patterns, such as forced feeding in the end stages of dementia or the cessation of certain therapies.

Not finding quite what I was looking for, I took on the challenge of trying to create a comprehensive document addressing an individual’s wishes during all the stages of dementia, including a wide range of care options and questions of nutrition and hydration.

The result is called the “Advance Care Directive Regarding Dementia.” And as much as I wanted to keep it simple, I decided that this document should be able to stand alone as guidance regarding one’s choices if they became afflicted with dementia. As a consequence, the Directive includes definitions regarding the stages of dementia and the different levels of care and treatment. The Directive allows one to make different choices based on the stage of dementia and the level of one’s mental acuity and physical capabilities.

A copy of the Advance Care Directive Regarding Dementia can be downloaded here.

DISCLAIMER: The Advance Care Directive Regarding Dementia (the “Directive”) is provided solely for informational and discussion purposes. The Directive is not intended to provide legal advice of any type. No representation, opinion, or warranty is made or implied with respect to the enforceability or legal effect of the Directive under the laws of the state of Illinois or any other jurisdiction. The review or use of the Directive does not create an attorney-client relationship between you and John M. Varde, P.C. or Schofield & Varde, LLP.

When should I complete the Directive Regarding Dementia?

The obvious (and slightly smart-alec) answer is that this Directive, like all health care directives, should be completed before it’s too late—i.e. before you really need it. Dementia results in an ongoing loss of one’s mental awareness and the ability to address one’s future needs. The choices which need to be made when completing the Directive are scary, and the possible fact patterns to be reckoned with are not ones that most wish to address.

No one really wants to consider what sort of medical care they want if they can no longer recognize their children or can no longer feed themselves or swallow. But if you have a family history of dementia or if you are in the early stages of dementia, you owe it to your family to let them know your thoughts and to put those thoughts in writing. Eventually, it is not you but your loved ones who will be burdened with making the choices for your care. Their choices will be easier if they know where you stand on the issues and if you give them permission to make the hard decisions.

From my view, the sooner you address these issues, the better. As long as you are still able to make your own medical decisions, you can amend or update your choices. However, there is a point at which dementia will rob you of the ability to make your own decisions or to tell your family what you want them to do. Sometimes, that point will come much faster than expected. Again, in my view, the best time to consider and discuss these issues is right now.

What do I need to know about the Directive Regarding Dementia?

The Directive is comprised of five sections:

1. Introduction
2. Definitions of the different stages of dementia and the levels of medical care
3. Advance Care Directives, which include your specific wishes regarding the level of medical care and choices regarding nutrition and hydration for each defined stage of dementia
4. Additional Directives, which include wishes regarding institutional care, permanent unconsciousness, and limitations on the revocation of the Directive
5. Signatures and acknowledgment by the witness to your signature

Below, I’ll go over each section to help you better understand the choices presented.

Introduction

In the beginning, the Directive establishes the legal foundation for the document and states how the Directive is meant to dovetail with one’s other health care directives. This includes statements explaining why the Directive was completed. The Directive urges and authorizes those making care decisions for you to make such decisions in accord with the wishes contained in the document.

The last several paragraphs of the introduction set forth a philosophical point of view, which is meant to bolster and explain the choices that are made. These paragraphs were written from a very personal viewpoint. If they don’t reflect your values, please feel free to insert whatever you think will help your future decision-makers understand and effectuate your choices.

Definitions: Stages of Dementia

While one is living, there is no scientific test that can diagnose dementia or determine which stage of dementia one is experiencing. Instead, a diagnosis of dementia is based on one’s conduct and one’s cognitive abilities. However, there is no universally accepted set of standards for the different stages of dementia, though there are at least four medically recognized standard definitions for the stages of dementia.

Although every set of definitions recognizes dementia as a progressive disease, there is no consensus for the different stages. Some have four stages, some have six or more stages. Some are only for Alzheimer’s dementia, some are for non-Alzheimer’s dementias. Some address cognitive abilities, some address physical abilities.

In an attempt to distill these standards, I have broken down the decline of dementia into four stages: mild cognitive impairment, mild dementia, moderate dementia, and severe dementia. Please review these definitions closely. They form the basis for the choices made in the Directive.

Definitions: Levels of Care

I did not find a broadly accepted statement regarding the different goals and levels of medical care and treatment so I created my own. My levels include Aggressive Care, General Care, Limited Care, and Comfort Care.

Please review these definitions carefully. Each definition begins with a general statement of the goal of such level of care and may include specific treatments that are desired or that should be avoided.

Advance Care Directives

There are a separate set of choices for each stage of dementia. The choices include directions regarding the level of care and directions regarding the provision of food and water (nutrition and hydration).

The choices regarding food and water address the fact that, as dementia advances, one progressively loses the ability to physically feed oneself, as well as the knowledge that one needs to eat. Eventually, one also loses the ability to chew or swallow. For each stage, there are several options that address these deficiencies, including being spoon-fed or having a feeding tube surgically implanted.

There is a school of thought that, in certain circumstances, one has the right to voluntarily stop eating and drinking. This approach is sometimes referred to as VSED (Voluntarily Stopping Eating and Drinking). Proponents of VSED believe that if one’s dementia is so far along that it destroys a person’s quality of life then the person has the right to stop all nutrition and hydration, even though it will cause their death in short order. For those people, they want the right to decide when their suffering is too much.

One problem with VSED and dementia is that one’s ability to voluntarily stop eating and drinking may be lost before the appropriate level of demise and suffering is reached. For example, by the time one has reached the stage of Severe Dementia, they have lost the cognitive ability to make a choice regarding VSED. Even though they did not want to live with Severe Dementia, they are no longer able to voice that choice.

The Directive attempts to address this paradox by giving one the option to make the choice to withdraw food and water in certain circumstances prior to the occurrence of such circumstance. If you do not want to be “force-fed” after you have lost the ability to feed oneself, for example, you can pick that option.

Additional Directives

There are a variety of faith-based hospitals and medical institutions that have ethical or religious policies that will not allow them to honor a direction to withdraw medical treatments or to withdraw nutrition and hydration. If someone finds themselves in an institution that will not honor the directives set forth, then the health care agent is authorized and directed to move the person to a more accepting location.

Although not directly related to dementia, there is also a direction to remove all life support systems if the person is in a state of minimal consciousness.

Illinois law allows the principal under a Power of Attorney for Health Care to orally amend and revoke a Power of Attorney for Health Care, even if the principal is not competent to make their own medical decisions. As such, the Additional Directives contain two provisions to stop one’s future self with dementia from overriding the Directive. First, the person must be competent to amend or revoke the Directive, and the changes must be in writing. Second, the person waives his right to amend or revoke their Power of Attorney for Health Care if their doctor determines that the person does not have the ability to make their own health care decisions.

Signatures and Witness

The Directive is designed so that it must be signed on each page that includes a direction about one’s future care. This is done to eliminate an argument that someone might have switched the pages and that the direction doesn’t represent the wishes of the signer.

The statements regarding the witness to the Directive are based on the format of witness statements under a Power of Attorney for Health Care.

What’s next?

If you feel that the Advance Care Directive Regarding Dementia reflects your views about dementia and sets forth appropriate choices for your care, you are welcome to use it or adapt it for your personal situation. You are urged to review it with your attorney, doctors, and other advisors before signing it. Of course, you should also review the Directive with your family and your health care agents and surrogates.

If the Directive doesn’t quite meet your needs, I am available to work with you to modify its language and viewpoint. Please contact me.

In any event, I look forward to hearing your comments and your stories about using the Directive Regarding Dementia or similar documents.

Contact John

Download Directive

Additional Information

There are many websites and organizations that address the issues regarding dementia and the need for a specific advance care directive for those afflicted.

The touchstone for me in this area was a letter written by Jerome Medalie in 2005. Mr. Medalie participated in a seminar on health care trade-offs at the 60th reunion of his Yale University graduating class of 1945, where he gave his views addressing the special dilemmas faced by Alzheimer’s patients and their families. The letter was a follow-up to those who attended the seminar and all others who were interested.

Mr. Medalie’s letter and other introductory material written by him are available here.

Jerome Medalie

Other resources:

Compassion & Choices is an organization that is at the forefront of advocating for medical aid-in-dying laws across the country.  Their website includes many resources and tools for setting your end-of-life priorities and expressing your decisions.

My End-of-Life Decisions: An Advance Planning Guide and Toolkit

Recently, Compassion & Choices introduced two interactive online tools to help one take control when there has been a dementia diagnosis.

Dementia Values and Priorities Tool

Dementia Decoder (questions to ask medical providers)

New York Times Article about dementia and advance directives by Paula Span.

Advanced Dementia – A Guide for Families by the Marcus Institute for Aging Research

End of Life Choices New York has a directive about receiving oral foods and fluids in dementia

Advance Directive for Dementia, by Dr. Barak Gaster, of the University of Washington School of Medicine.

Dr. Stanley Terman has developed a set of documents regarding advance directives for patients with advanced dementia, including a Natural Dying Agreement.  There is a significant charge for these materials.

 

Contact John