Many people find it difficult to discuss or plan for their end-of-life care, but the majority have strong feelings about how they would like to be treated and cared for in their final months, weeks, and days.
The most reliable way to ensure your end-of-life wishes are honored is to create an advance directive: a legal document that specifies the types of care and interventions you want—and do not want—if you are seriously ill and unable to speak for yourself. Advance care planning will not only legally define your end-of-life wishes, but it will also prevent crises and reduce the decision-making burden on your family, designated caregivers, and healthcare team.
Advance Directives for Alzheimer’s Patients Act Ahead of Time
We hear about the importance of having advance directives (ADs) in place in case we become permanently unconscious or if our illness progresses to the point where we are no longer able to make decisions on our own. We encourage young, healthy people to think about what they might want in those circumstances now, talk about it with loved ones now, and write it down now in a state-approved form.
Because nearly all dementias are progressive, ADs are especially important for people with dementia. As a result, individuals suffering from dementia can be expected to deteriorate to the point where they are unable to communicate their treatment preferences. They are then reliant on caregivers, family, surrogates, and physicians to make healthcare decisions for them.
Anyone diagnosed with Alzheimer’s disease should have completed an AD long ago, or as soon as possible after diagnosis. But the reality is never perfect. Even if healthcare decisions are written down in black and white, what about the other decisions that may need to be made throughout a person’s life with Alzheimer’s? When does the patient become competent? When is he/she not present? A person is generally considered legally incapacitated when two doctors have tested and examined the patient and completed certificates of incompetency.
When No Advance Directive Is In Place
When there is no AD and family and professionals are assessing a person with Alzheimer’s competence, the Alzheimer’s Association recommends using “the least restrictive alternatives”—that is, whenever possible, choose to protect the person’s right to make his or her own decisions.
End of life care planning
The Association also supports the following principles, which it refers to as “respect for authority”:
When possible, and until safety becomes an issue, a person with dementia’s wishes should be considered.
The presence of Alzheimer’s disease alone does not imply incompetence.
Competent individuals have the right to refuse any medical treatment. This is a right that many people with mild or moderate dementia retain, and it should be protected.
A person with Alzheimer’s disease may lose the ability to drive, manage financial affairs, or live independently in the community, but he or she retains the ability to make competent decisions about where to live and medical care at the end of life.
Appointing a legal guardian for specific tasks, such as financial affairs, may allow a person with Alzheimer’s disease to retain some control over other aspects of their life.
Being uninhibited, careless with hygiene, prone to mishaps, or unable to keep things tidy does not imply mental incompetence.
It may be appropriate to appoint a legal guardian to make decisions about property or finances, but leave other decisions to the person with Alzheimer’s disease, such as personal care, food, shelter, and medical care.
The Value of Legal Documents
It is critical to plan for advanced dementia incompetence through legal documents, many of which differ depending on the state in which the person resides. The most common are:
Advance directives: Oral and written instructions regarding one’s future medical care, including the designation of a healthcare agent and acceptable life-sustaining procedures, if one is unable to speak for oneself. It can be used in place of two separate documents: a living will and a durable power of attorney for healthcare (also referred to as healthcare power of attorney, healthcare proxy and appointment of a healthcare agent).
A living will specify one’s preferences for end-of-life care, the use of life-support systems, and the treatments one does and does not want.
A durable power of attorney for healthcare, which delegated decision-making authority on medical matters to a specific person if the original decision-maker was no longer competent.
Estate will, which specifies how one’s property will be handled after death.
Make plans for one’s future health care needs.
Research directives that allow individuals to participate in research studies.
An ADVANCED DESCRIPTION Particularly for Alzheimer’s patients
In recent years, a new advance directive has been developed that allows people living with Alzheimer’s disease and dementia to document their lives when they are no longer competent. The “Alzheimer’s Disease and Dementia Mental Health Advance Directive,” as it is known in some states, is legal.
Its worth comes not from its legality, but from its comprehensive look at life with Alzheimer’s. Where you will live, how you will finance your care, changes in an intimate relationship, when to stop driving, and how pets will be cared for are all issues to consider. Filling it out sends a message: I do not want someone else’s opinion to be substituted for my own. Regardless of whether the document is legal in your state, it provides a clear guideline for loved ones.
A two-page “Values Worksheet” at the end of the six-page AD assists people in considering their options. It can be filled out and shared with family, used as a starting point for discussions, or used as a worksheet.
When you document your desires and care goals when you are well enough to make decisions, you relieve your loved ones of a burden and gain more control over future decisions. Early documentation also eliminates later questions about whether you had the capacity to make the directive at the time you did. (You are unable to make any directives after becoming incapacitated.)
If the person with Alzheimer’s is no longer competent and has not completed a living will, decisions are usually made by the spouse. If that person is unable to perform the task, the decision is made by the oldest child. A better approach than assigning responsibility to a single person is for the entire family to talk about the person with Alzheimer’s, how he lived, and what he believed in. When a difficult decision, such as resuscitation or feeding tubes, must be made, general agreements about what he would want help to avoid family rifts.
Even if we have Alzheimer’s disease, we have the right to make our own healthcare decisions. Making advance directives is a gift not only to loved ones but also to the person with Alzheimer’s.