Guide to Advance Care Planning for Dementia
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We frequently receive questions about advance care planning and Act 39 (Medical Aid in Dying) in the context of dementia or severe cognitive decline.
An advance directive, sometimes called a living will, is a legal document that outlines your health care preferences in the event that, in the future, you become unable to make or communicate those choices. As part of the document, you choose a person, your “health care agent,” who will advocate for you during times when you do not have decision-making capacity. The Question People Ask: Can I put in my advance directive that I want to have medical aid in dying so that in the future if I can't communicate this wish myself, I will still be able to use Act 39? The Answer: No. By definition, Act 39 is not an option in dementia cases because in order to be eligible for medical aid in dying, you must be capable of making and communicating health care decisions for yourself. Common Questions: Concerns about health care options in the case of dementia are common. How can we plan for the possibility of cognitive decline? How can we make our wishes known ahead of time? Some people have very specific ideas about what they would or would not want in terms of treatments and interventions. Others are less certain. |
VIDEOS
Where to Find Advance Directive Forms: The Vermont Health Department provides forms and instructions on their website, where you can create and register your forms. Click Here. Note: These forms do not include a directive about dementia. See below for our recommendation. Read Ruth's Story to see an example of how specific directives related to dementia enabled a peaceful death. (Scroll down past the videos.) |
Considerations:
Some people with dementia may live for a long time after their quality of life has declined to an unacceptable level. For those who fear living with dementia and wish to avoid a prolonged final phase of life, there may be “exit strategies” that arise before the disease process is in its terminal phase. It is prudent to consider how you feel about this, and to outline a possible plan if you are among those who would welcome death in such circumstances. For example, you could direct that if you contracted pneumonia, you should be allowed to die. Other examples include continued management of diabetes, or a hip fracture which may be “fixable” conditions, or may be “terminal conditions” depending on treatment choices. Patients have the right to stop any treatments they are receiving or to decline any new treatments that do not offer meaningful benefits.
Some people with dementia may live for a long time after their quality of life has declined to an unacceptable level. For those who fear living with dementia and wish to avoid a prolonged final phase of life, there may be “exit strategies” that arise before the disease process is in its terminal phase. It is prudent to consider how you feel about this, and to outline a possible plan if you are among those who would welcome death in such circumstances. For example, you could direct that if you contracted pneumonia, you should be allowed to die. Other examples include continued management of diabetes, or a hip fracture which may be “fixable” conditions, or may be “terminal conditions” depending on treatment choices. Patients have the right to stop any treatments they are receiving or to decline any new treatments that do not offer meaningful benefits.
Actions You Can Take:
For those who worry about a prolonged final phase of life, here are some concrete ways to make your wishes known ahead of time and plan for a more natural dying process:
Treatment preferences (advance directives) and medical orders (DNR/COLST) are different. Both are important in the case of a life-limiting diagnosis because they cover complementary information. Advance directives include details about a person’s health care agent and more complete health care preferences. A DNR/COLST form is an actual set of doctors’ orders that helps medical care providers understand your wishes at a glance. It includes instructions about CPR, intubation, antibiotic use, and feeding tubes. One form does not substitute for the other. Combined, they cover the physical, emotional, and spiritual wishes of a person.
Additional Resources:
The Conversation Project provides guidance for writing a letter to Loved Ones. See also their Conversation Starter Kit.
Alzheimer's Assocation: Materials on End-of-Life Decisions
Finish Strong: This book includes a very good chapter on planning for dementia.
For those who worry about a prolonged final phase of life, here are some concrete ways to make your wishes known ahead of time and plan for a more natural dying process:
- Add a Dementia Directive to Your Advance Directives. You can add a section to your advance directives clearly stating your values and your worries about dementia. Be specific about what constitutes a good quality of life to YOU. There is a good example of a dementia advance care directive developed by Compassion and Choices. Click Here. In this directive, for example, you can choose whether to decline medical treatment for various conditions and you can specify the circumstances under which you would not want to be fed. You can add this at any time to your advance directives.
- Important Note About Stopping Eating and Drinking: Care facilities are obligated to take good care of all residents and they may interpret this as requiring that food be offered at all meals, including spoon feeding. There is a natural reflex to open one's mouth when touched with a spoon, and many care-givers interpret this as a communication that the patient wants to eat. That is why the Dementia Directive form that you can link to includes a specific instruction not to spoon feed.
- Health Care Agent: Most people choose a close family member as their health care agent. Your health care agent will have the power to evaluate options and make decisions for you when you are not able to do so yourself. Because it is challenging to predict every situation, your health care agent becomes your best chance at receiving care that matches your values as closely as possible. Therefore, it is best to designate a health care agent who understands well your values and can advocate on your behalf in any situation.
- DNR/COLST: As soon as it becomes clear that you would not want your life prolonged, complete a DNR/COLST (Clinician Orders for Life-Sustaining Treatments) form with your doctor. This is the medical order which allows you to decline certain treatments and accept a natural death. DNR/COLST orders must be requested while you are still able to make your own decisions.
- Specific Limits: If medically appropriate for your situation, clearly indicate limitations of treatment, i.e., no hospitalization, no IV fluids, no antibiotics, no flu shot, no respirator, AND a clear plan for how to respond with comfort measures while avoiding medical interventions that could be life-prolonging. There is a good list of these on the Dementia Directive from Compassion and Choices we recommended above.
- Hospice: Enter hospice as soon as you are eligible. This is the best program available to care for those living with terminal illness. It also helps support your family and loved ones before and after your death.
- Care Facility: Instruct your health care agent that in the event you are to be cared for in a facility, that the facility is to be given your Advance Directives, including your Dementia Directive and that your health care agent should determine as much as possible that the facility is committed to following your directives.
Treatment preferences (advance directives) and medical orders (DNR/COLST) are different. Both are important in the case of a life-limiting diagnosis because they cover complementary information. Advance directives include details about a person’s health care agent and more complete health care preferences. A DNR/COLST form is an actual set of doctors’ orders that helps medical care providers understand your wishes at a glance. It includes instructions about CPR, intubation, antibiotic use, and feeding tubes. One form does not substitute for the other. Combined, they cover the physical, emotional, and spiritual wishes of a person.
Additional Resources:
The Conversation Project provides guidance for writing a letter to Loved Ones. See also their Conversation Starter Kit.
Alzheimer's Assocation: Materials on End-of-Life Decisions
Finish Strong: This book includes a very good chapter on planning for dementia.