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Feb 3, 2020

Alzheimer's: Do you know their wishes?

by Gary Skole

We may occassionally think about what we want regarging end of life health care. Are you prepared to honor the wishes of the individual with dementia that you care for?

With advanced and terminal illnesses, such as later stage dementia, a range of medications, technology, and care are available to provide greater comfort, assistance with symptoms and pain management. As a caregiver, how well do you know the wishes of the individual with dementia that you spend time with? We may think about what we want regarding our health care needs and journey throughout life, however we don’t always talk about it.

Although someone who is memory impaired may no longer be able to make their needs and wishes known, they still matter. Emotions and family dynamics can play a role in the end-of-life care when someone is unable to make their needs known. In the absence of important instructions, such as advances directives, Do Not Resuscitate and Do Not Hospitalize documents, physicians, care-partners, and family members have to guess. This may lead to disagreements, or the absence of what that individual really wanted for themselves.

While this topic is often uncomfortable and challenging to introduce, it's important to engage in this conversation. A report from the Institute of Medicine found widespread dissatisfaction with end-of-life care. Most people with advanced illness shared that they preferred to die at home, however, the majority died in hospitals, receiving more aggressive care than they desired.

Advance directives for health care are documents that communicate the healthcare wishes of a person with Alzheimer's disease. These decisions are then carried out after the person can no longer make decisions. In most cases, these documents must be prepared while the person is legally able to execute them.

living will records a person's wishes for medical treatment near the end of life or if the person is permanently unconscious and cannot make decisions about emergency treatment.

durable power of attorney for health care designates a person, sometimes called an agent or proxy, to make healthcare decisions when the person with Alzheimer's disease no longer can do so.

Do Not Resuscitate Order instructs healthcare professionals not to perform cardiopulmonary resuscitation (CPR) if a person's heart stops or if she or she stops breathing. A DNR order is signed by a doctor and put in a person's medical chart.

You can find more information on advanced directives for healthcare at the National Institute on Aging.

Another important consideration for advanced directives for healthcare is whether they are easily  accessible.  Many times important paperwork is kept in a ‘safe place.’ This place is often not known to others or is not accessible, especially during emergencies. Safe deposit boxes, under the mattress, a lock box in the back of the closet may seem like a secure place, but they are also difficult for other to access when the time is necessary.

Even for those who did prepare a legal document making their wishes known, the information is not always shared. According to the Agency on Aging for Health Care Research and Quality report, between 65% and 76% of physicians whose patients had an advanced directive were not aware that the document existed.

We suggest that along with making time for this conversation, the important documents are kept some where accessible, especially if caregivers are in the home. You might consider the side of the fridge or in a folder on the counter.

We encourage you to ensure the individual you care about and care for is protected and living the way they desire, especially if you are a health care proxy. You’ll be glad you did. After all, isn’t that what you want and what we all deserve?

About the Author

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Gary Skole

Gary is a founder of AlzBetter with decades of experience improving care for patients with challenging healthcare needs at home. He is a published author and frequent speaker on Dementia, Transitional Care Management, and Patient Engagement.