How Much Freedom?

posted on 03/01/00 12:30 pm by Fr. Mark Miller, C.Ss.R.  

Prairie Messenger
January, 2000
Mark Miller, C.Ss.R., Ph.D.

A recurring ethical issue at all levels of health care – hospitals, nursing homes, home care – is the question of how much freedom to allow a patient who wishes to engage in “dangerous” activities. Now, this may sound like an esoteric question because most of us can hardly think of dangerous activities that we might engage in during our own day-to-day activities. However, people without any physical or mental impairment seldom consider the “dangers” that await the forgetful senior or the suddenly shaky-on-his-feet frail person.

When a patient/client is in the care of others (family or health care professionals), there is a responsibility for that person which creates an ongoing ethical issue about “allowing” the person under care to do certain activities.

Here’s a simple example. Mr. Doe is home from the hospital after a stroke that has affected his ability to talk and to walk. He can get around with help, but he loves to go outside and have a smoke. Forget whether or not he should smoke. The question that arises for those caring for him is, “What happens if he falls?” The ethical issue is that the caregivers do not have time to accompany him every time he wishes to go outside, so he chooses to go on his own. But if he falls, he could end up in much worse shape.

Versions of this question are found everywhere. “Mom ought to be strapped into her wheelchair in the nursing home because she is liable to fall and break her hip and then where would we be?” Those on renal dialysis because their kidneys no longer work sometimes break down and cat all those things they are just not supposed to eat. The caregivers then have the tough job of getting the misused body back to a reasonable harmony-on-dialysis. How about the man who has had a heart attack but insists on getting his exercise – at a pace that his family thinks is too demanding and therefore too dangerous?

In short, do people who are being cared for by others have the right to take risks?

There are three levels of answers to this question. Most importantly, such patients or clients do not have the right to put others at risk. Thus, the smoker who is on oxygen and tries to sneak a smoke with the oxygen on endangers his or her own fife as well as everyone else in the house. Similarly, a person who has been neurologically debilitated by a stroke or Alzheimer’s or a brain injury has no right to try and drive a car and thereby endanger the lives of others. In many cases, caregivers have a responsibility to the rest of society to ensure that patient behaviour does not threaten the lives or well-being of others.

Second, when the risks that a patient/client undertake are personal risks, ethically one could invoke the notion of proportionality. The risks have to be weighed in proportion to the benefits that the patient seeks. Thus, a smoker derives considerable enjoyment (or fulfilment of an addictive need) from smoking and may well choose to risk pneumonia or a fall for a smoke outside. Often, as seniors become more and more fragile and weak, the things they enjoy doing become a test for the caregivers’ time or ability to assist. Think of the enjoyment of “getting outside” on a nice day when nobody in the nursing home has time to accompany a patient. Or the decisions many families have to make about restricting or restraining their elderly parents who may wander off and get lost.

Such risks always have to be weighed by the caregivers, hopefully giving real, but not absolute respect to the wishes of the patient. Caregivers cannot restrict patients out of fear of a lawsuit should anything happen. Nor can they smother patients because there is no time to accommodate the patients’ choices. Obviously, caregivers cannot be.everywhere and do everything – but they can reason with patients where a bit of negotiation might make a walk outside possible if the right time can be found. Or they might discuss with family members the importance of allowing a forgetful senior to wander on somewhat shaky legs, risking a fall and a broken hip, because the alternative is some kind of restraint that the patient, even in dementia, obviously hates. This is the third level a-round the issue of risk: negotiation.

Briefly, patient wishes ought to be listened to and respected as far as possible. And, I would say, some risk ought to be accepted where the rewards, however small they may seem to an outsider, provide a bit more zest for or enjoyment of life. Think for a moment of letting your teenage son or daughter go skiing. You know they could break a leg, or worse. Yet, you ensure that they have safe equipment, good training, a moral lecture on not being reckless, and a prayer that they will act maturely and be safe. The kids then go out and enjoy life. Why are we so hesitant with our seniors and frail elderly to allow similar risk-taking?

Notice that the important part of the caregivers’ responsibility to seniors lies in the respectful listening to their desires and the willingness to negotiate conditions, timing, various forms of assistance or safety assurance, and boundaries. I am not talking here about bowing to the willfulness of the stubborn patient; nor am I siding with the caregiver who is too busy and must ultimately answer for the safety of the client. Within good or reasonable boundaries, many risks can be minimized or simply accepted so that the patient/client can live a bit more fully.

Notice, too, that institutions are very conscious of these negotiations. A locked Alzheimer’s unit in a seniors’ home is a great compromise on allowing these patients to roam somewhat freely (risking a fall), but following the inner compulsions of their disease.I would hope that families will read this article as well and learn to give their loved ones room to risk. Often I see family members – who leave the daily care to the health care staff – so concerned about ‘safety’ that the patient is unfairly restricted, much to the distaste of the staff. Over-protectiveness by family members may prolong the physical life of an elderly person, but often at the cost of restricting their very will to live. If family members are uncomfortable with what they perceive to be undue risks, then they should sit down with the caregivers (and, certainly, the patient, if possible) and negotiate the risks and the safety.

Too many people are afraid of growing old, not simply because of the frailty of old age, but because they fear being hemmed in by well-meaning relatives and caregivers who forget that though the senior’s choices may be more limited, they are still his or her choices.

And choices, which flow from our unique personalities, are one of the things that keeps us human.

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