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Dementia and The Right to Self Determination

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In the United States, a patient’s right to make their own health care decisions is a federal law.  The Patient Self-Determination Act (PSDA) ensures that a patient’s right to self-determination in health care decisions be communicated and protected.

Clearly there are some people with dementia who are unable to make sound decisions regarding their healthcare and lifestyle options.

But what about someone with or without dementia who can make those decisions? What are a potential patient’s rights? What if a person with dementia demonstrates unsafe behavior that puts them at risk for injury or death?  Do they still have the right to participate in that activity?  And can they set the parameters on their lifestyle choices before cognitive decline occurs?

Over My Dead Body

Lou was 85 years old and lived alone in a 100 year-old row house in central Pennsylvania. Lou’s memory had deteriorated to the point that he could no longer remember to take his medications or to eat regularly, and relied on family to assist him daily with those things.  But Lou had clearly stated to his family that he wanted to die in his own home.  He did not want anyone to live with him nor did he want to go live with anyone else.  His family felt strongly that Lou had the right to determine his fate, but were emotionally torn about allowing an accident to occur if they had the ability to prevent it.

One day Lou’s family discovered a gash on his head and a bruise on his arm.  He had fallen down the steps but could not remember doing so.  He said he must have banged it on the hood of the car while he was changing the oil- something he hadn’t done in years. The family begged Lou to let someone stay with him, but he refused.  His confusion progressed.  He started feeding his dinner to the dog.  He resisted taking his meds. A short time later, Lou was found on the floor, unconscious. He died the next day.

Lou died from dehydration and kidney failure.

Lou also died from a degenerative disease that impacted his cognitive function.

Lou also died from neglect.

Or did he?

The ethical battle of how a person with dementia will live out his days is one of the most painful challenges that caregivers face.  Was this family negligent in allowing Lou to remain at home unsupervised?  Or was Lou’s demise nothing more than a natural progression of an incurable disease?

Newsflash:  Life Is a Terminal Condition.

Internal self-determination is the right of a person to govern him or herself without outside interference.  It is a legal term usually applied to political freedoms.  But in the context of human rights, self-determination is a slippery slope.  A person who makes the decision to ride a motorcycle puts himself at a greater risk for injury or death than a person who decides to drive a car.  That is his right.  A person with cancer can decide whether to treat the disease or not. That is also his right. Sometimes the right to self determination is clear and honorable.  Other times, it is murky and nebulous.

A person with Alzheimer’s disease may decide early on that he wants to live alone without assistance, but once things progress, we rarely allow that to occur. In fact, most caregivers begin to systematically encroach on these “rights” for the sake of safety and peace of mind. As Mike at Together in This discusses in his post on NextAvenue 

We all want our loved one to be the person they once were, and we don’t want to diminish their individualism. If we take away these daily routines that provide pleasure, do we lose a piece of our loved one? And do we cut away at their purpose in life?

The Tip of the Iceberg

Lifestyle choices, including where, how, and with whom a person chooses to live, are especially difficult to honor in cases of dementia.  Related issues that are equally difficult and tricky  include medical care and recurrent hospitalizations for treatable conditions that may also be considered natural causes of death for people with incurable, progressive diseases.  Urinary tract infections, pneumonia, and hip fractures frequently lead to a decreased quality of life for people who do not “bounce back” easily from illnesses, and who also tend to suffer accelerated cognitive decline after each episode. Decreased quality of life, increased medical expenses, and caregiver burden are just a few of the potentially unnecessary challenges inherent in end of life care for people with Alzheimer’s.

Be Careful What We Wish For

Ethical issues such as lifestyle freedoms in dementia are nearly impossible to apply rigorous standards to.  There is no blanket decision that can be applied to every case, as just tugging on a single thread in the fabric of dementia care could unravel the ability to have the freedom of choice.  We don’t need government policy to dictate common sense, but we do need a critical thinking road map that considers fair and honorable decisions.

*Ethical dilemmas are daily conversations in the world of dementia care.  However, I do not claim to be an expert on ethics or a legal advisor on this topic.  But I do believe the discussion is necessary, and I strongly encourage more dialogue on this issue.

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  1. What a tough situation for families who are trying to honor their loved one’s wishes. And of course, when one family member wants to make the tough decision, the other family members aren’t ready. This results in further family divide which hurts the person they are trying to help. But we can’t allow people to die alone in their homes so we have to strike a balance which is obviously not an easy task.

  2. I am in the first stages of vascular dementia. I did not know that I had the right to direct my future care. How can I find out more about this and how to make my wishes legal?

    • Hi Brenda, you can have a lawyer (or an online source) put together your advance directives. You have the right to determine what extent of medical care you want, but there are some limitations. As far as your living arrangements go, you can state your preferences, but I’m not sure that there is any way to guarantee them. An attorney or social worker can help you with this. Good luck!

  3. As an OT in home care and working with the elderly, I see this very frequently. It causes pause to think about our role in the home in the context of people’s lives and their goals. It is very challenging and heartbreaking and I am feel very fortunate to be in a profession that allows me to care this much.

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