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Dementia and Unwanted Medical Treatment

By Jena Johnson, End-of-Life Consultant

Your mother has been recently diagnosed with one of the forms of dementia: Alzheimer’s, vascular dementia from a stroke, Parkinson’s or another mentally disabling disease that means, in the future, it is unlikely that she will be able to make medical decisions for herself. Knowing her, you suspect that she won’t want any heroic measures taken to prolong her life. How can you help make sure that you and her Healthcare Team know what end-of-life care she would want?

The following forms, conversations and decisions can go a long way toward clearly outlining your mother’s end-of-life wishes and priorities.

Advance Directive (AD)

Your mother should have a current advance directive (AD). This form has two parts: first is the living will declaring the person’s medical wishes should they become incapacitated and unable to speak for themselves. Second is the designation of a trusted person to advocate for those wishes, sometimes called healthcare proxy or power of attorney for healthcare. Your mother should thoroughly review these wishes with her healthcare providers and with her proxy, giving each a copy for their own files. Visit https://www.compassionandchoices.org/eolc-tools/ under “Select Your State” to see what your state has to offer.

Healthcare Proxy

A healthcare proxy is a trusted person designated to oversee your mother’s medical care and make healthcare decisions if she is not able to do so. This person may also be called a healthcare representative, healthcare agent or medical durable power of attorney depending on which state she resides in. Neither the attending physician nor a skilled nursing home can dictate these choices, such as whether to call the paramedics and whether to transport your mother to a hospital. When she is unable to do so, a well-informed healthcare proxy will be better prepared to make decisions about medical care in accordance with your mother’s values and her wishes. She can also declare who she does not want involved in making medical decisions on her behalf.

Compassion & Choices Dementia Provision

The Compassion & Choices Dementia Provision can be added to an existing advance directive. If your mother becomes incapacitated, the dementia provision of her advance directive or living will can help direct her healthcare proxy to stop hydration and feeding or prevent other unwanted medical treatment. The Compassion & Choices Dementia Provision can be found by clicking here.

Physician Orders for Life-Sustaining Treatment (POLST)

A POLST document gives very clear instructions about what life-sustaining treatments a person does and does not want in the case of an emergency. If your mother lives in a state that recognizes POLST, she can complete this document with the help of her physician and then prominently display it in her home, on the refrigerator or somewhere else in plain view. The paramedics are trained to look for it and will not attempt CPR if “Do Not Resuscitate/DNR” is checked. If there is no POLST, they will perform CPR and any other lifesaving procedures the situation calls for. To learn more, visit: http://www.polst.org/ and talk with your doctor.

Withholding Unwanted Medical Treatment (UMT)

With dementia, your mother’s advance directive can instruct her healthcare proxy or loved ones to withhold unwanted treatment or refuse artificial life-sustaining therapies that would prolong her dying process. Instead, she could be kept comfortable and allowed to die naturally. Careful consideration and discussion between your family, your mother and her healthcare team will help to identify what’s important to her. Then, when your family faces the decision of whether to agree to life-sustaining treatments, you will know what she would have wanted. To learn more, visit: http://endumt.org/