Autonomy in Elderly Patients: Caring Without Taking Away Their Decisions

Why does autonomy in elderly patients matter? If you have found yourself deciding everything for your parent, here is how to protect them and their voice too.

You are sitting in the doctor's office. The doctor addresses the questions to your mother or father, but you are the one answering them. You make most of the decisions about which medicine they take and when, who they see, even what they eat. You do it out of love, because you want to protect them. But one day, when you hear your mother say, "I don't have a say in anything any more," your heart sinks. Autonomy in elderly patients, that is, a person's ability to take part in decisions about their own life, often slips away quietly during illness and old age. In this article I look at why adult children do this, what loss of autonomy feels like for an older person, and ways of protecting their right to decide while also keeping them safe. Medical and legal assessments of a person's decision-making capacity are the domain of doctors and the relevant specialists; here I will focus on the psychological side of the relationship.

What Is Autonomy in Elderly Patients, and Why Does It Matter?

Autonomy is a person's ability to direct their life according to their own values and preferences. It covers not only big decisions but also the small choices of everyday life: what to wear, when to sleep, whom to visit, how to spend their money.

In old age, physical strength may decline and help may be needed with some skills. But this does not mean that the person's need to have a say in their own life declines too. On the contrary; as control over the body lessens, the right to decide becomes one of the most valuable things a person still has.

In older people whose autonomy is protected, the following positive effects are observed:

• Dignity and self-worth. The feeling "I'm still someone who matters, people listen to what I say" protects how a person sees themselves.
• Motivation. A person who takes part in their own decisions may engage more willingly with treatment and daily routines.
• Mental health. Loss of control and a sense of helplessness are frequently linked with depressive symptoms in older people. I discuss this separately in the article on depression in later life.
• The quality of the relationship. When decisions are made together, the relationship between parent and child becomes more of a partnership than a "carer and cared-for" relationship.

Why Do Adult Children Start Deciding Everything?

Adult children who make decisions in place of their parent usually do so without realising it. Behind it there are usually good intentions and worry.

• The wish to protect. Worries such as "What if they fall?" or "What if they take the wrong medicine?" can turn into an effort to eliminate every risk.
• Time pressure. For an adult rushing between work, children and home, making the decision themselves can seem easier than waiting for their parent to decide slowly.
• Focusing on the illness. When the illness takes centre stage, the rest of the person's identity can become invisible. The label "patient" starts to mean "unable to decide."
• Cultural patterns. In many families in Turkey, caring for an older person is equated with "protecting them from everything." Saying "Don't you tire yourself, we'll take care of it" is an expression of love; but sometimes it also takes away the person's say over their own life.
• Not noticing the change in roles. When a parent begins to need help, children sometimes start, without realising, to treat them as they would a child.

These attitudes stem not from ill will but from love and worry. Even so, they can leave deep marks on the older person.

Let us imagine a woman in her fifties who takes over all the tasks of her eighty-year-old mother after her mother is diagnosed with heart failure. She prepares her mother's medicines herself, does her shopping, even arranges how visitors are received. One day she notices that her mother no longer attends the neighbours' gatherings she has kept up for years. When she asks, her mother says, "What would I decide? You arrange everything anyway." This fictional example shows that every task taken on with good intentions can also take away a small responsibility from the older person, and with it a small area of meaning. If the daughter suggests that they prepare the pill box together again, and that her mother decides the menu for the neighbours' gathering, it can open a door for her mother to take part in life again.

What Does Loss of Autonomy Feel Like for an Older Person?

An older person whose decisions have been taken away may show the following feelings and reactions:

• A sense of worthlessness. The thought "I'm no use for anything any more" is common.
• Anger and resistance. Some older people react to loss of control with anger: refusing treatment, turning down food, pushing help away. These behaviours are often interpreted as "stubbornness"; in fact, the person is trying to protect the area of control they have left.
• Withdrawal. Other older people become completely passive. They say "You know best" and let everything go. Although this may look like cooperation from the outside, it may be an inner surrender. Rather than greeting a parent who has gone quiet with relief that "they're not causing trouble any more," it is worth wondering what lies behind that silence.
• Shame. Being seen as someone who cannot make their own decisions can cause a person shame.

For example, if a father who was moved into his child's home after being discharged from hospital hears "No, what would you do there on your own?" every time he says he wants to go back to his own home, over time he may stop voicing that wish. But stopping does not mean he no longer wants it.

How Can Autonomy in Elderly Patients Be Protected? Practical Suggestions

Protecting autonomy does not mean leaving a parent completely free in every matter or ignoring risks. The aim is to strike a balance between safety and the right to decide.

Talk with them, not about them

In appointments with doctors, during visits from relatives or at family gatherings, it is very common to talk in front of an older person as if they were not there. Instead of saying "My mother doesn't really understand, let me explain," leave room for your mother to answer the doctor. If necessary, you can support her afterwards by asking, "Would you like to add anything?"

Offer options

Offering options rather than "yes or no" for every decision gives a person a sense of control:

• "Would you rather go to physiotherapy on Tuesday or Thursday?"
• "Shall we have soup for dinner, or shall I heat up yesterday's food?"
• "This week, would you like your daughter to come over, or shall your neighbour drop by?"

Break decisions into parts

Big decisions (for example moving into a care home or selling the house) do not have to be made all at once. Sharing information bit by bit, giving them time to think and talking about it again allows the parent to genuinely take part in the decision.

Balance risk and dignity

Some older people may want to do things their children consider risky: going to the market alone, staying a few days in their house in the village, working in the garden. Rather than forbidding it outright, arrangements that reduce the risk can be discussed: "Go to the market, but take your phone with you and call me when you get back." Where medical risks are involved, it is important to assess them together with the doctor.

Leave small responsibilities at home

Autonomy in elderly patients is nourished not only by big decisions but also by everyday contributions. Tasks such as preparing vegetables, watering the plants, looking over a grandchild's homework or keeping track of when the bills are due make a person feel they still have a role. Leaving these tasks to them, even if they do them slowly or less perfectly than you would, gives them something more valuable than efficiency: the feeling of being useful.

What to say and what not to say

Sentences you might use:

• "This is your life. I want to know what you think."
• "These are the options I can think of. Which would you prefer?"
• "I'm worried, but I also want to respect your decision. Let's find a way together."

Sentences to avoid:

• "You don't understand, I'll deal with it."
• "Whatever the doctor says goes, your opinion doesn't matter."
• "Stop being stubborn like a child."
• "I'm doing it for your own good, don't argue."

The line between protecting an older person and living their life for them becomes clear when we ask whether we have asked them what they want.

Autonomy According to Illness and Circumstances

Older people with a physical illness but a clear mind

In conditions such as limited mobility after a stroke, heart failure or COPD, the body may need help, but the ability to make decisions is often preserved. In this case it is important that help is given in a way that supports the person in carrying out their own decisions. The question "What do you need?" is far more respectful than the sentence "I'm going to do this for you."

Early-stage dementia

In early-stage dementia, a person can still make decisions about many things. This period is also a valuable time to talk about what kind of care they would like in the future, who will help with financial matters and what their health preferences are. Putting off these conversations can mean missing the chance for the person to express their own wishes later on. If legal arrangements are needed, it is a good idea to consult a legal professional.

Advanced dementia

As the illness progresses, decision-making capacity may decline. Even so, a person's preferences do not disappear entirely. Small choices, such as which clothes they want to wear, what music they enjoy and whom they like spending time with, protect their identity and dignity. For big decisions, taking into account the person's past values and wishes is a way of letting their voice be heard indirectly.

Protecting autonomy in areas that require privacy, such as personal care, is a particularly sensitive matter; I discuss it in the article on bathing an elderly parent.

Autonomy Among Siblings and the Wider Family

Care decisions often create tension between siblings too. One sibling may say, "I'll take Mum to live with me," while another says, "She should stay in her own home." The person most often forgotten in these debates is the parent, who is the real owner of the decision.

Since it is the parent who will live with the outcome of the decision, their voice should be at the centre of this discussion. Inviting the older parent to the table at family meetings, asking for their view first, and discussing disagreements between siblings not in front of them but at a separate time can be helpful. When the extended family makes comments such as "Should a woman her age really live alone?", standing up for your parent's preferences is an important form of support you can give them.

When Should You Seek Professional Support?

Caring for an elderly parent is emotionally challenging for both the caregiver and the person being cared for. Seeing a mental health professional may be helpful in the following situations:

• Marked withdrawal, loss of interest, hopelessness or remarks such as "There's no point in living any more" in your parent
• Constant conflict with your parent or your siblings over care decisions
• Feeling that you have to control everything, and being worn out by it
• Feeling stuck between respecting your parent's preferences and protecting them

If you notice thoughts of ending their life in your parent or in yourself, call 112 (emergency services) in an emergency. Discuss your questions about your parent's general health and decision-making capacity with their doctor.

How Is the Relationship Between Caregiver and Older Person Addressed in Therapy?

Psychological support can help an adult child understand the dilemmas they face while caring for a parent and develop a more balanced approach. In individual therapy, thoughts such as "I have to prevent every risk" or "If anything happens to them, it's my fault" are examined, and work is done on the excessive need for control these thoughts create.

Therapy can also address preparation for difficult conversations with a parent, communication with siblings and skills for protecting one's own boundaries. In some cases, sessions may also be held with the older person themselves; especially if there are depressive symptoms or the person is struggling to cope with the changes they are going through, psychological support opens up a space for them too. Where travel is difficult, or if the adult child lives in another city, sessions can also continue online.

Frequently Asked Questions

What should I do if my parent wants to make a dangerous decision?

First, share your worry openly without blame and try to understand why they want to make this decision. Look for middle ground that reduces the risk. If the decision could have serious medical consequences, having a conversation together with the doctor will be guiding for both of you.

My mother says "You know best" to everything; is that respecting her autonomy?

Not always. Some older people say this because they genuinely trust you, others because they feel worthless. Giving her a second chance by saying "I really want to know what you think" can help you find out her real preference.

Are there still things my father with dementia can decide?

Yes, usually there are. Small choices such as clothing, food, music and activities during the day protect a person's identity even in advanced stages. For big decisions, it is important to act together with the doctor and, if necessary, a legal professional.

Is it selfish to take my own decisions into account too?

No. Respecting your parent's autonomy does not mean ignoring your own needs and boundaries. A healthy caring relationship is one in which both sides are heard.

• #elderly care
• #autonomy
• #family caregiver
• #patient psychology

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Eda Erkan Alapala

Klinik Psikolog. İstanbul Kent Üniversitesi Klinik Psikoloji Tezli Yüksek Lisans mezunu; bilişsel davranışçı terapi, çocuk merkezli oyun terapisi ve çocuk-ergen psikoterapisi alanlarında eğitimlerini tamamlamıştır.

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