Dementia & Psychiatric Illness

Addressing the issue of dementia in an advance directive is an increasingly important priority for many seniors. With the number of Americans living with Alzheimer’s disease and other forms of dementia increasing every year, many people fear the loss of control over medical decision-making that a dementia diagnosis brings. To address this concern, the end-of-life advocacy organization Compassion & Choices has created a Dementia Values and Priorities Tool that allows you to identify and communicate to loved ones what you would like to happen in the event you are experiencing advanced dementia and can no longer speak for yourself. The answers you provide are digitally transferred to a Dementia Healthcare Directive Addendum that includes specific instructions for your medical providers, healthcare facilities and family. The document begins with the following statement:

I ______ am completing this document because I want my surrogate decision maker(s), physicians and health care team, family, caregivers and loved ones to know my wishes regarding the type of care I want if I am living with dementia.

The Dementia Values and Priorities tool is accessible both as a printable form available for download and an online version. The interactive online version of the tool is the only one of its kind and provides you with a document that can be included with your current advance directive. It is available in multiple languages and also includes key terms with videos to provide more detailed information about important concepts such as “artificial hydration” and “comfort care.”

In addition to the form created by Compassion & Choices, there are a growing number of similar tools available that allow you to outline the kind of care you would like or not like in a variety of circumstances. The Dementia Advance Directive created by End of Life Choices New York, for example, specifically addresses the institution of assisted feeding in a person with advanced dementia. Another option is the Advance Directive for Dementia created by Dr. Barak Gaster of the University of Washington Medical Center, which goes into much more detail about the kind of care you would want if you had mild, moderate or severe dementia. We recommend that you review each of these and make a choice as to which one is best suited to your needs.

Sources

“Dementia Advance Directive”. End of Life Choices New York. https://endoflifechoicesny.org/directives/dementia-directive/ 

“Advance Directive for Dementia”. https://dementia-directive.org/ 

“Dementia Values and Priorities Tool”. Compassion & Choices. https://compassionandchoices.org/dementia-values-tool/ 

“Alzheimer’s Disease Facts and Figures”. Alzheimer’s Association. https://www.alz.org/alzheimers-dementia/facts-figures

Beginning a discussion about end of life with someone who is experiencing cognitive decline can be very challenging. If the person is in the early stages of Alzheimer’s disease or dementia, they may not be aware of the changes or think the discussion is premature. If they are in the middle stages of the disease, they may have limited ability to express their thoughts and ideas and may have lost the ability to make informed decisions. In any event, the longer you wait to address the issue, the more challenging it will become. 

Although there is no “right” or “wrong” way to talk with your loved one, The Conversation Project offers some simple, easy-to-follow guidelines that may help you proceed. You can read them in their entirety in the Conversation Starter Kit for Families and Loved Ones of People with Alzheimer’s Disease or Other Forms of Dementia, but here are a few of the most salient points. 

• Be gentle. If your loved one has recently been told they have Alzheimer’s disease or dementia, they may be frightened of what the future holds. Due to the loss of insight and empathy that often accompanies dementia, they may resist any attempt to talk about what they want. One way to address this is to acknowledge that everyone is afraid to talk about death, including you. Then start the conversation by talking about what you want when you’re approaching the end of your life. “I don’t like to think about it, but when I do, I think I would like…” This may encourage your loved one to share their thoughts as well. 
• Focus on values. Rather than focusing on specific end-of-life measures, try to center your conversation around what is most important in your loved one’s life. What is most important to them? Do they love to eat? If so, you might ask what they would want to happen if they could no longer feed themselves or swallow solid food. Is family interaction paramount? If so, would they want to be kept alive with aggressive measures if they no longer recognized who their family was? These are hard questions, but framing them in the context of values can make them easier to ask.
• Keep it simple. People who are experiencing cognitive decline usually do best when information is presented or discussions occur in small bites. Bring up what’s most important first, which is who they would like to make decisions for them if they can’t speak for themselves. You may wish to make suggestions rather than ask them to come up with a name on their own. “Aunt Gin and you are very close. Do you think she would be a good person to tell the doctor what you want?”
• Break things up. You don’t have to address every aspect of end-of-life decision-making all at once. Let your loved one guide you — when they no longer seem engaged in the conversation, let it go for a while.
• Be prepared to go over things more than once. Even people who have no cognitive deficits tend to forget parts of important conversations. For people with dementia, this is especially true. Start each new conversation with a short review of what was discussed before. “Remember, yesterday we talked about…” You may need to refresh their memory more than once. 
• Use cues from the past. A person with dementia may retain some long-term memory, so it may help to bring up situations from the past. For example, if you are trying to have a discussion about aggressive end-of-life interventions, you might bring up someone in your family who had a prolonged or difficult death. “Remember when Dad was in the ICU and how hard it was on Mom and us?”
• Be persistent. Your loved one’s cognitive and emotional state will vary from day to day. If they are particularly resistant to having a conversation about their end-of-life wishes now, remind yourself that tomorrow is another day and resolve to try again.
  

Sources

“Your Conversation Starter Guide: For Caregivers of People with Alzheimer’s or Other Forms of Dementia”. The Conversation Project. https://theconversationproject.org/wp-content/uploads/2016/05/TCP_StarterKit_Alzheimers.pdf

There is no guarantee that doctors or the legal system will honor any advance directive, especially one that addresses dementia. A Dementia Directive is intended to document your wishes and preferences for life with dementia and to assist the healthcare team and loved ones in making decisions that align with what you want. To be valid, it must be completed while you have decision-making capacity, so that might be in advance of a diagnosis or early in the disease process. People choose to fill out a dementia directive because loss of decision making capacity is something they are concerned about. 

However, because the dementia directive is made well in advance of you actually experiencing severe cognitive decline, issues can arise that make it difficult to implement what the directive says. Nevertheless, there are some strategies that can help ensure that a dementia directive is honored when health care decisions must be made. 

Specificity Is Key

If you are completing an advance directive to prevent certain medical interventions should you develop advanced dementia, start with the assumption that there will be challenges to its validity. Thus far, none of the standardized directives that address these kinds of issues for people with dementia have been reviewed in a court of law, and the organizations that created them (e.g., Compassion & Choices, End of Life Choices of New York) freely admit that there is no way to ensure that those with the power to do so (doctors, administrators or the courts) will comply with your wishes. In fact, the courts have historically been extremely reluctant to allow physicians to stop interventions such as assisted feedings, and some families who have tried to do so have been threatened with charges of elder abuse. 

Although no directive is foolproof, one way to try to preemptively overcome the challenges to your advance directive is to be very specific in your instructions and the conditions under which they should be carried out. A court in the Netherlands refused to honor a woman’s instructions to stop assisted feeding because her directive did not specify “oral” feedings, so a judge made a determination that she only wanted to avoid being fed by a tube. Even some standardized tools are similarly ambiguous.

Similarly, many advance directives fail to specify what conditions must be met for the directive to go into effect. Vague statements such as “I am very ill and unlikely to recover” leave too much room for interpretation and can easily be ignored. It is far better to identify specific scenarios (e.g., “I no longer recognize my loved ones;” or “I am agitated and upset most of the time and my caregivers can’t help me to calm down”). The Dementia Values and Priorities Tool created by Compassion & Choices is a very good example of the kind of specific behaviors and conditions your advance directive should address. 

With that being said, there are currently no laws in any state that fully protect a person’s right to determine their own destiny in advance of developing dementia. And, as experts point out, it is unlikely that such laws will be enacted anytime soon. The ethical and moral question of when a person’s suffering is “bad enough” to warrant withholding certain medical treatments is extremely individual and will likely always be a matter of debate. 

Nonetheless, if you are concerned about dementia and would like to try to make your wishes known in advance, make sure your advance directive is clear and specific and– most importantly — that your healthcare team and surrogate decision makers are aware of what you do and do not want. 

Sources 

“Dementia Values and Priorities Tool”. Compassion & Choices. https://compassionandchoices.org/dementia-values-tool/

A psychiatric advance directive is a legal document that outlines the care you do and do not wish to receive if you experience a severe mental health crisis and are unable to accurately communicate your treatment goals. If you are living with a serious mental illness, the psychiatric advance directive – also known as a mental health directive – allows you to communicate your treatment preferences while you are well and have the capacity to make informed decisions. Instructions may include information about:

• Which hospitals you wish to be treated at and which you want to avoid
• What medications have worked for you in the past
• What medications do not work or cause unmanageable side effects
• The names and contact information of friends, family and/or health care providers you trust
• The names of people you do not want to visit if you are hospitalized
• Consent to or refusal of electroconvulsive therapy (ECT)
• Possible causes of your mental health crisis (e.g. what triggered crises in the past)
• Ways to help you avoid hospitalization

As with any other healthcare directive, you may also include a healthcare power of attorney that designates who your surrogate decision maker or HEALTHCARE PROXY will be. That person will have the legal right to make decisions about your care if the healthcare team treating you determines that you lack the capacity to give informed consent. 

Notably, the instructions in a psychiatric advance directive DO NOT supersede the medical judgment of a treating physician and cannot prevent involuntary hospitalization if a qualified healthcare provider certifies that it is warranted. 

Goals of Psychiatric Advance Directives

The goal of a psychiatric advance directive is to bolster autonomy for people who live with a serious mental illness and facilitate shared decision making between those patients and the healthcare team. Historically, people who are experiencing an acute mental health crisis have been subjected to numerous coercive measures, including involuntary hospitalization, chemical restraint and treatment with various psychoactive drugs. And while these interventions are often necessary in the short term to keep the patient and those around them safe, their routine use has, in many cases, created an adversarial relationship between psychiatric patients and their caregivers. A psychiatric advance directive can help minimize the use of coercive measures and, according to several studies, improve patient outcomes such as symptom severity, feelings of empowerment, therapeutic alliance and rates of recovery. 

Creating a Psychiatric Advance Directive

As of this writing, most states in the U.S. allow for some form of advance directive for mental health care, although many only provide statutory forms for the appointment of a power of attorney for mental health care. Whenever possible, it’s best to use the forms provided by the state to help ensure that your directive will be honored when you are in crisis and cannot advocate for yourself. You will also need to comply with your state’s requirements around formalizing the document. For example, some states require the signatures of one or two witnesses while others mandate that the directive be notarized. To learn what is required in your state, refer to this state-by-state guide provided by the National Resource Center for Psychiatric Advance Directives. 

Regardless of whether your state has enacted a law around psychiatric advance directives, many experts in the field of mental health advocate for their use.  Thus, if your state does not provide a form that allows you to delineate your care preferences, you can design one yourself and attach it to your advance directive for healthcare or living will. This series of five short videos from the National Resource Center for Psychiatric Advance Directives provides step-by- step guidance on how to design a psychiatric advance directive that communicates your past experiences with mental health crises, as well as your personal preferences and treatment goals. 

Limitations of Psychiatric Advance Directives

Like all advance directives, psychiatric advance directives have operational limitations, such as the inability of first responders to locate the directive when a health crisis occurs. To minimize the chances of this occurring, make sure that your surrogate decision makers, your treating physician and your next of kin have a copy of your directive and that you keep those copies up to date. Unlike a general advance directive for healthcare, a psychiatric advance may need to be updated quite frequently as your mental health and treatment preferences evolve. 

Another major limitation of psychiatric advance directives is the inability of many persons with severe, chronic mental illness to understand the concept of a mental health directive or locate resources to assist them in completing one. This is especially true of patients who have had repeated interactions with the mental health care system and been subjected to multiple coercive interventions, such as involuntary hospitalization, restraint and seclusion. Having already lost faith in the system’s desire to preserve their autonomy, these patients may see little purpose in creating a document that will most likely be ignored. 

Still another limitation of psychiatric advance directives is the reluctance of care providers to honor them. When one considers that most interactions between the healthcare team and people experiencing a mental health crisis occur in the emergency room, this is hardly a surprise. Doctors and nurses confronted with a combative, hallucinating, or delusional patient are unlikely to take the time to look for a directive before instituting care. Nonetheless, once the crisis has been managed and the patient’s safety ensured, a psychiatric advance directive can help guide treatment decisions around future care. 

Summary

In summary, a psychiatric advance directive is a legal document that, if properly executed, may help persons living with a serious mental illness avoid involuntary hospitalizations and unwanted, ineffective or possibly harmful care. Although their use is not currently widespread, many policymakers and mental health providers advocate for their use. If you or a loved one suffers from a severe mental illness, it may be worthwhile to learn more about this potentially useful tool. Contact the National Resource Center for Psychiatric Advance Directives for additional information and helpful resources. 

If you or someone you know is in crisis, call or text 988 or chat at with 988lifeline.org. You may also contact SAMHSA’s National Helpline

24/7 to obtain free, confidential help.

• Call: 1-800-662-4357
• TTY: 1-800-487-4889
• Text your ZIP code to: 435748
• Visit SAMHSA’s National Helpline

Sources

“What Is an Example of Chemical Restraint?” MedicineNet. https://www.medicinenet.com/what_is_an_example_of_chemical_restraint/article.htm 

“A Practical Guide to Psychiatric Advance Directives”. SAMHSA. https://library.samhsa.gov/sites/default/files/psychiatric-advance-directives-pep19-pl-guide-4.pdf 

“The Therapeutic Alliance: The Fundamental Element of Psychotherapy”. Psychiatry Online. https://psychiatryonline.org/doi/10.1176/appi.focus.20180022 

“Psychiatric Advance Directives”. Mental Health America. https://mhanational.org/position-statements/psychiatric-advance-directives/ 

“Creating a Psychiatric Directive”. National Resource Center on Psychiatric Advance Directives. https://nrc-pad.org/creating-a-psychiatric-directive/