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We mostly rely on our intuition and instinct telling us we are doing (or about to do) something unethical. Ethical dilemma and brain injury is not always so clear. What makes this so?

Last week as an introduction to ethical dilemma and brain injury, the focus was on ethics and ethical dilemma.

In that article I shared a powerful quote, from Rabbi Dr Milton Pine, that has started my thinking about about ethical dilemma and brain injury.

This coincided with finding an article by Dr Geoffrey Scott entitled “Ethical Dilemmas” (Think, 1991). It was in deeply buried in my archives, and found during a clean out.

(As an aside, that clean out showed me there is much to be learned from the old, and what is new, is not always that new!)

Back to the article; Dr Scott was both a teacher of ethics, and the father of a son with brain injury. Like Dr Pine, he also eloquently described an ethical dilemma faced by many. I am going to include his full quote here. I believe it continues to be relevant:

[box size=”large”]“…is every individual life quite apart from the degree of its functional potential, intrinsically valuable and equally possessed of rights, as far as it is capable, to care, housing education, health, employment and the exercise of autonomy? Or is the claim for respect diminished according to the degree of incapacitation? In short, can we expect that brain-damaged persons will receive a contribution from society in proportion to their needs, in order to enable flourishing of those persons? Unfortunately this questions of value is not resolved either philosophically or practically.” (Scott. Dr Geoffrey, 1991). [/box]

Twenty two years later we seem to be no closer to a philosophical OR practical resolution.

Ethical dilemma and brain injury

The article by Dr Scott identifies a number of ethical dilemma around brain injury including; family roles, autonomy, and access to treatment (or not).

In another book I found in my archives, “The American Academy for the Certification of Brain Injury Specialists” lists three main areas creating ethical challenges, around brain injury: The outcomes of brain injury; Power relationships; and Treatments and strategies.

(A note here: online, I could only find this updated version,which does not seem to have the piece about ethical dilemma in it).

Challenges, ethical dilemma and brain injury:

I have used those 3 headings to describe challenges you may be faced with. Please share others in the Comments below or send me a note.

The outcomes of brain injury

You may find yourself with an ethical dilemma arising from the actual outcome of brain injury. That sounds odd, but think about ethical dilemma and brain injury, here are some possibilities:

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• Believing in autonomy and personal choice. Yet pushing a person who has no motivation to act, when they show no desire to do so. A person might even state they do not wish to do anything yet you need to push them to act.
• Physically restraining a person who is behaving aggressively.
• Believing in being truthful, yet not correcting a person with memory loss who forgets a past event, such as death of a spouse.
• Being asked to carry out an activity you do not believe in, such as assisting a person to visit a sex worker when you do not believe this is OK.
• For the person with brain injury, cognitive outcomes (such as disinhibition, verbosity, impulsivity, sexually inappropriate behavior) may create unethical behavior they do not intend. This could be blurting information publicly and breaching someone’s privacy; touching a person inappropriately without that person’s OK.

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Different Power Relationships Between People Involved

When a person has a brain injury other people, such as family members and supporters, will often make decisions and choices on behalf of that person. Life choices might include deciding what treatment will be tried, where the person will live, who they will meet up with. Even though the person may be able to make choices.

Family members, or professionals might put pressure on a supporter to take an action they do not believe in, or that differs from what the person with brain injury wants. E.g. A therapist schedules a cooking session the supporter must assist with. The supporter has said the person does not like cooking, and that he/she refuses to participate, yet the supporter is instructed to continue.

A person with brain injury may put pressure on a supporter to take an action they do not believe is OK. E.g Allowing the person to have more than one drink of alcohol, even when a limit of one has been agreed with family.

Dilemmas can also arise with differing views between people involved such as funding bodies, family, legal entities, supporters and the person with brain injury.

Treatment and Strategies

Sometimes the treatment or strategy proposed might challenge the ethics of those asked to carry it out.

To highlight this, it can be useful to look back at treatments and strategies carried out in the past that now seem unethical. The title says it all really “What will medicine consider unethical in 100 years?”

As another digression: For anyone interested, I highly recommend the book “The Immortal Life of Henrietta Lacks” by Rebecca Skloot. Henrietta is the person discussed in the opening paragraph of the article on what we might consider unethical 100 years from now. While the book is not about brain injury it provides much to think about in a whole range of ethical dilemma including the family, health care, and the ethical (or not) decisions made by people along the way.

You may be challenged as an individual when considering questions about treatment such as ‘does the end justify the means’. For instance being directed to carry out behaviour management strategies based on punishment, when as supporter you might believe in positive reinforcement, not punishment.

 Resources about Ethical Dilemma and Brain Injury

Here are a range of resources to get you thinking, and hopefully explain more about ethical dilemma and brain injury:

“The Ethical Challenge Posed by Acquired Brain Injury” by Joanna Collicutt McGrath. Describing the complexity that brain injury adds to ethical issues, this article gets you thinking about ethical dilemma and brain injury. It looks at a range of challenges faced by supporters.

“Did Your Brain Make You Do It?”  The New York Times published an article by John Monterosso and Barry Schwartz that challenges us to think about personal responsibility and our brain. Outlining an argument that our thinking changes as we gain more knowledge about the brain. Challenging our thinking about when, and under what circumstances, we hold people responsible for what they do.

Three Farewells, Medicine and the End of Life  This video  is  a fascinating look at some key ethical dilemma and brain injury, particularly end of life decisions.  In a hypothetical type discussion a panel, with a range of expertise and views provokes our thinking. If you don’t have time to watch the full video, the site itself (provided by the Annanberg Foundation) is well worth exploring. It provides a range of learning materials and videos about some of the complex decisions we make in all areas of life.

Braunling-McMorrow, D. (2004). “Training manual for certified Brain Injury Specialists” (M. B. M. Lash & V. A. McLean, Eds., 3rd ed.). USA: Brain Injury Association of America.

 And Finally

There is a lot to think about. Often we are confronted with an ethical dilemma without much preparation, and time to think carefully about it.

As a first step

As you look at some of the examples here, and from your own experience think about these 3 questions:

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• What are the principles and beliefs that guide you.
• What you do now when faced with an ethical challenge?
• What have you discovered is helpful?

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Next week a look at ethical decision-making when faced with an ethical dilemma and brain injury.