Working in health care, I am faced with questions about a person’s ability to say no to health care treatment or service. Unfortunately, there is so much uninformed thinking about this issue, we waste energy on something that should be much simpler.
The problem is that self-determination is a concept that does not possess singular qualities, but is multifaceted and complex. Each facet has a subtle difference that requires some degree of mental focus and contemplation to look at. It is this lack of focus and contemplation that dooms us to be caught up in issues that are not ours to own and also ignore issues that we should deal with.
I have spent some time thinking about this and I happy to share how I see these facets existing on the theoretical Slope of Self-Determination:
1) People Have the Right to Make Bad Choices
We start out at the top of the the slope. The assumption here is that everyone is competent until proven otherwise. It is both reasonable and practical to assume that people are competent to make their own choices, whether they are good or bad. People are given the freedom to succeed or fail.
A person may choose to smoke despite its health risks or to gamble despite not having money for their other obligation. Those who make good choices will find life to be challenging but possessing a sense of progress, while those who make bad choices will find themselves victimized by the eventual boomerang of their action’s consequences.
The lesson to learn here is that a free and just society would allow people to make their own choices AND suffer the resulting consequences of those actions.
2) Making Bad Choices Does Not Make One Bad
When a person makes good choices, there is little ethical or social debate. It is only when a person goes against the conventional mores of society that problems follow. Yet, regardless of the choice being made, there tends to be a societal prejudice to confuse the action with the inherent quality of the individual.
For example: a person spends all of their money on gambling and does? not have enough money to pay their rent or to pay for clothing for their children would generally be seen as somebody who is making bad choices. This individual obviously has some serious issues, but the poor choices do not translate into saying the individual is tainted or bad.
The person might have an addiction problem, an impulse problem, or perhaps a mental illness. They might also have wrong ideas about gambling. The problem of gambling is actually a symptom to a more subtle problem. To blame the individual for their poor choices ends up doing more harm than good since it alienates them from being given the opportunity to potentially change for the better.
The lesson to be learned here is to separate the action from the person.
3) Offering Assistance Does Not Impose on Self-Determination
Carrying on with the previous example, our person who is struggling with a gambling problem, may be seen as making conscious choices to gamble. Some argue that they are doing to themselves and there is no point offering to help them.? While it is true that nobody is being coerced to gamble, there is a sad truth that sometimes people do not utilize the proper skills to deal with what life throws at them.
Some people think that since the troubled person has not yet successfully dealt with their gambling problem that they are not interested in offers of assistance. Its a variation of blaming the victim. Its as if that to offer a potential solution would impose on the gambler’s self-determination.
This is a twisted misconception. A person always has a right to refuse assistance, but they must first be given the opportunity to refuse it. This means that the care or treatment needs to be offered first.
I have met some well-intentioned, but mislead people who think that respecting one’s Self-Determination means expecting clients are take the initiative to ask for help. Yet there could be a range of reasons why people do not ask for help. Respecting Self-Determination means respecting the person’s right to refuse and not assuming they do not want help because they have not asked for it.
The lesson here is that to truly respect self-determination is to give the individual the opportunity to say no.
4) Refusing Care Is A Right, But Not A Sentence
This is closely tied to the above point, but possesses a subtle difference, as it focuses on the caregiver’s perspective.
A person refusing assistance is not the same thing as not asking for care in the future. Self-determination means being allowed to say no to a present choice, but not being condemned by that choice for the rest of their life. There are times when people are sometimes too tired, too confused, or too proud to ask for help but a choice can always be reversed.
I had a client who refused a treatment for his diabetes, he thought that he was going to manage this on his own. He never did a good job with managing it, and when he developed complications, it became incumbent on the health care team to ask him if he wanted help. He still did not accept the offer, but the point is that he just made another choice to say no.
And there may possibly come a time when he will accept the offer for assistance since it is completely reasonable to assume that people do change their minds and may actually want the help.
The lesson here is to always keep the door open to the person to change their mind about accepting help.
5) Evidence of Chronic Poor Self-Determination Should Not Be Ignored
It is assumed that people will eventually learn from their mistakes. Their bad choices if allowed to boomerang to them will hopefully show them the error of their ways. But what happens when some people never learn? What happens if they continue to make the same bad choices and are hopelessly in trouble?
I have had clients who could not learn from their mistakes and they tended to have one of the following problems:? a birth defect, dementia, mental illness, uncontrolled addictions, or very rigid world view. Given such conditions, I think that it is wrong to ignore these limitations and allow the person to continue to make the same mistake.
When a person makes the same mistakes and after many years (or months if the decisions are particularly disastrous) the person then requires intervention by family and/or the health professionals. Ultimately, the person may be declared incompetent and will have their affairs taken over by somebody else.
Human beings are biologically built to learn so it is reasonable to expect people to learn from their mistakes so they can function at their optimum. Thus, I would argue that a person who is not able to learn needs to be protected and their range of choices would need to be more limited than somebody who is able to learn.
The lesson here is to be prepared to step in to help a client when the poor decisions have reached a state that is unreasonable.
6) An Incompetent Person still retains their Right to Dignity and Some Self-Determination
Now just because a person is incompetent, does not mean that they are non-persons. They continue to have feelings, opinions, and still retain aspects of their decision making.
A person with advanced dementia will still remember how they have been made to feel. They might not remember the content of the conversation, but they definitely will feel all of the non-verbal communication directed at them. Just because a person cannot make appropriate decisions, does not mean they need to be devalued.
I had a client with advanced dementia who was given the option to choose what kind of clothing he would like to wear from two different choices. He would not be allowed to self-determine to not wear clothing or to wear soiled clothing, since either choice is unreasonable, but he would be asked to become involved with this limited decision making.
The lesson her is that giving people with limited capacity the dignity to make some decisions is the sign of a compassionate society.
7) A Person Who Harms Others or Themselves Needs Protection Must Have Their Actions Curtailed
A person who chronically abuses chemicals to the point they cannot function normally needs protection. Most states have laws that dictates that society needs to both protect the vulnerable and to be protected from those who do not respect human life.
Chemical restraints should be the preferred method to protect the larger community from individuals who have slipped to the very bottom of the slope. A community’s need for safety should? trump the needs of any individual who is so incapable to make proper decisions. There should be no negotiation in regards to this.
The bottom of the slope is the most extreme and difficult aspect of self-determination. It is where people end up at when they are both the most vulnerable and the most difficult to deal with. The difficulty with our society is that it refuses to acknowledge the importance of community in the decisions to release dangerous offenders back to re-offend again or when it comes to protecting the incompetent. Our heads are collectively in the sand.
I had a client who had dementia, was financially abused by members of his family, and could not manage his medical needs. Upon entering the hospital, he was returned home to the same situation despite my expressed concerns. The doctors had assessed that he was choosing to make this decision to return to his home. They ignored all of the signs that he was vulnerable. Yes, he wanted to return home, but this was because he did not understand that he was vulnerable or that he was being stolen from. The system failed him and he inevitably ended up in hospital again after being booted from his home due to the family not paying the rent.
The lesson here is that if there is no protection of society and the vulnerable, then government and its institutions become drags on the happiness of its citizens. It is this weight that drags society down to the base of the self-determination slope. A society that does not protect itself is doomed to dysfunction, corruption, and forever impairing the happiness of its members.