Chapter 1: Autonomy vs. Safety

As a person ages, physical and cognitive changes can occur that challenge their independence and ability to live alone or with a partner who is equally debilitated. The desire for independence is a built in human need that begins to emerge in infancy and continues through life. This independence is necessary for us to successfully emerge from the protection of our parents. It is this same independence that creates a challenge for grown children who seek to help their parents negotiate their emerging limitations. Just as a child stubbornly strikes out for his or her own autonomy, so too does that same person as an aging parent stubbornly fight to maintain it. In both the case of child and aging adult, this sought and fought for autonomy may run in the face of what may be safe and reasonable. Just as a parent needs to let a child take risks and develop this autonomy so they can develop into their own person, so must an adult child let his or her parents take risks to maintain their autonomy so they maintain that personhood.

The challenge in both the case of the child and the aging adult is to allow enough risk for the person to develop and exist, while at the same time providing guidance, boundaries, and if necessary intervention to maintain their safety. This challenge exists along a continuum of risk, from very low to very high. Unfortunately, the lower the risk the less autonomy the individual frequently enjoys. If you, as a grown child of an adult parent do not fully grasp this concept, you will be frustrated and probably be headed for major battles with few desired outcomes. In fact, grasping this concept may require you to redefine the desired outcome. For example, an expectation on your part that mom or dad will never fall at home may require continuous supervision and limited activity. If they don’t move much, there is less chance they will fall. When they do move, if someone is with them, they will be caught before they can fall. How enjoyable an existence will it be for them if their activities are limited? And if activities are limited, don’t they become subject to side effects of immobility such as pneumonia, pressure ulcers, and decreased ability to ambulate due to muscle wasting? Not to mention the invasion of their privacy and autonomy if their every motion has to be monitored and supervised by another person.

If the expected outcome is changed, the frustrations may be lessened. This may increase the risk, but also may increase the chance of success. Consider what happens if we change the expected outcome from “mom or dad will never fall at home” to “mom and dad will have a reduced chance of falling, and if or when they fall, they will be less likely to get hurt and will be able to summon help quickly.” In this later example, we still implement measures to reduce the chance of mom or dad falling. These measures may include things like taking up throw rugs and other tripping hazards, installing night lights around the house or apartment, and providing a walking support such as a walker or cane. The lack of constant supervision, however, increases the risk of a fall. By redefining the goal to expect that they will be less likely to get hurt and can summon aide quickly, we implement other interventions. These may include providing supplemental calcium to strengthen bones (with medical provider’s guidance), removing sharp objects and pointed-end furniture from the environment, dressing mom or dad with hip pads that help to cushion a fall, etc. The ability to summon assistance quickly can be achieved actively through providing mom or dad with a subscription to a personal emergency response system (like the one seen in the famous “I’ve fallen and I can’t get up” commercial), or a passive system like a home monitoring device that picks up motion in the home and calls or texts a neighbor or relative if no activity takes place over a certain amount of time.

For an older person experiencing dementia and wandering, there is a natural inclination to keep them safe by seat belting them into a chair to keep them immobile and safe. Wrong answer! Seat belts, or other restraint devices that keep a person immobilized are extremely dangerous. At the very least, they contribute to muscle wasting from the activity limitations. At worst, they can cause death when an individual struggles to wiggle free of them and may actually slide beneath and become entrapped and strangled. A more appropriate approach is to create an environment where the person can safely wander by removing any trip hazards, or other things in the environment that may be hazardous if run into, touched, or eaten. Put two knobs on the door that must be turned together to open an outside door (not an easy task for even a person not cognitively impaired, and place an alarm on the door in case it is breached either by the person with dementia or a visitor. Be aware of fire safety and never dead bolt doors shut with people inside with no way of escape in case of fire.

The father of a friend of mine recently passed away at his home after returning there from a holiday party. He went inside the house and told his wife he wasn’t feeling well. She went over to him and held his hand, he kissed her, and he died. This wonderful man never suffered the indignity of loosing his independence and leaving his home to live in a nursing home. Death does not happen as suddenly and peacefully for all. Over time, individuals frequently decline to the point that as much as we strive to help them maintain their autonomy, it becomes too unsafe or impractical for them to remain at home. The point at which this occurs differs for each individual. There are several key markers from my experience that tend to help families establish when the time is right. Some of these markers include, but are by no means limited to:

• inability to transfer from a bed to chair
• inability to ambulate with an assistive device to the bathroom or a commode chair
• inability to control significant and frequent bladder incontinence (leaking and occasional accidents can be handled with a brief or diaper)
• aggressive behavior to loved ones or caregivers
• inability to eat without significant assistance

When one or more of these markers becomes present, it is time to have conversations about the reality that home based care may be exceeding what is reasonably safe or practical. In fact, the quality of life experienced when an individual with these limitations may be significantly improved if they move to a setting where appropriate support and care is available. Families often report having improved relationships with mom or dad when they are placed in an appropriate setting because they can focus on enjoying their company rather than battling over care routines. The difficulty of making this decision cannot be minimized. Remember to be respectful of the person’s autonomy if their cognition remains intact enough to understand what is happening to them. Be careful to acknowledge their loss, and provide support and reassurance through this difficult reality.