On The Outside Looking In On Ethics and End Of Life Decisions

There are plenty of situations that involve the dying in which loved ones and friends are on the outside looking in on a situation.

I have spoken with others who have found themselves looking in and when doing so they see things that make them uncomfortable or that just are not right.

Often, family members and friends who spend 24 hours a day taking care of people they love or care about lose track of why they took on that role to begin with.  Many simply lose faith in the medical system, don’t understand medical instructions, don’t know where to get quality information, or fail to educate themselves in how to properly care for the terminal patient. It is also possible that the caregiver has simply made a poor decision because of burnout and frustration that the patient is more needy or take longer to die than the caregiver and the doctors had anticipated.

As an outsider, one needs to consider what they should do when they see things that just are not adding up. First try talking to the patient or caregiver indirectly about the situation to see if they have noticed the same concerns. Make sure you consider whether or not the patient will be helped by making your concerns known. If the patient would be further harmed as a result of someone’s decisions, then more consideration may be needed and advice from a professional in the field should be sought. This can be done anonymously and without revealing the name of specific people involved in the decision making. Also, consider contacting your local protective services (adult or child); consider seeking advice from a local patient advocacy program, and/or contact your local law enforcement if you do not know how to contact the above listed programs. Remember you can do this anonymously and without naming the people involved except that the name of the patient will need to be given so that the situation can be properly investigated.

Recognize that when you are concerned enough to research possible outsources, the situation really should be looked into by someone that is not personally involved in the decisions being made. Your instincts are probably better than you think they are. Make sure that you are not angry at the caretaker or the patient and retaliating. If you are, make sure you tell this to the official you contact as this can make you less objective. It is good to consider that you are not trying to get the caretaker or the patient in trouble, you are seeking advice on how you should handle your concerns.

This journey will be a test of courage. It is not easy to know what the right thing to do is. Consider Aristotle’s concept that

“Courage is the moderate virtue between the extremes of cowardice and recklessness. Man should not simply live, but live well with conduct governed by moderate virtue. This is regarded as difficult, as virtue denotes doing the right thing, to the right person, at the right time, to the proper extent, in the correct fashion, for the right reason.”

This statement sums the situation up better than any words I can come up with. Part of being courageous is accepting that should you make the decision to officially report your concerns. In making this decision, if the caretaker or patient were to find out that you are the one who made the report, you may not be able to further assist the patient after you make your concerns officially known.

The agency taking the report cannot reveal your identity to those being reported. Request to make the report anonymously, but remember that the process of elimination could reveal who you are. The patient and his or her family and friends may not want you around them out of fear that you could see other things that may lead to further concerns. They will, at the very least, be on guard whenever you are around. Over time, understanding can be found. If you find that you can talk to them about your action, let them know that you made your decision to report your concerns because you care about the patient and/or the caretaker, not to cause him or her harm or heartache.  If you decide not to do anything, make sure can live with your decision to do nothing.

I like Wikipedia’s explanation of the process one faces when considering what they should or should not do.

“People in-general are more comfortable with dichotomies (two choices). However, in ethics the issues are most often multifaceted and the best proposed actions address many different areas concurrently. In ethical decisions, the answer is almost never “yes or no”, “right or wrong.” Many buttons are pushed so that the overall condition is improved….”

And, in the end, you are seeking to improve the conditions for all involved.  And, you have to live with whatever choice you make in how you deal with the situation.