Wednesday, December 11, 2013

Bullying the Dying Person

Life is precious and because we hold it so, we often become staunch advocates for its protection and refuse to permit anything that we believe interferes with its continuing on, even in persons diagnosed with terminal illnesses. Having said that, it may appear to you that I am advocating something you find vile, unacceptable on religious terms or psychologically unsound. After all, shouldn’t life be defended at all costs? Shouldn’t we always err on that side rather than the other?

Two things exist here and each almost demands that we deny one in favor of the other. Yes, they are life and death and it is the latter to which I address this blog.  For once, let’s stop with all the reverence for the theory of death and dying espoused by Dr. Kubler-Ross. To my knowledge, the theory has not been widely studied to provide support for it and it appears to rely more on consensus than scientific validity.  If you’d like to consider a different perspective on how people who may be experiencing a terminal illness grieve their loss, read “The OtherSide of Sadness: What the New Science of Bereavement Tells Us About Life AfterLoss” by Dr. George Bonanno.

Each of us must come to terms with this ultimate loss for others or ourselves and, if there’s one thing that Bonanno indicates and with which I heartily agree, it’s that we all do it on our own terms. We don’t follow stages or phases or anything formalized and that’s okay.  The problem arises for many of us when healthcare professionals profess a dogged adherence to Kubler-Ross and her ideology of death and dying. When this insistence is repeatedly forced on the patient or the family or the friends, wouldn’t you say it’s bullying? I would and I believe they would be wrong and would bring more pain than there would be without their intervention. Is this some kind of game you win if you get the dying person to agree that they must accept their impending nothingness?

So, they add pain and perhaps even guilt by their poorly planned actions. Yes, my friends, the classes you took told you this was the way it was done as though it were the only way and you were sent forth to carry this message of dying and grief without consideration that it might be wrong.  Nothing is written in stone and here, above all, this is an area of life where only one person decides and that is the dying person.

When someone knows they have a terminal illness and that their days on this earth are limited, don’t you think they have a right to handle it however they wish? If they don’t want to accept it and carry on as best they can with their life, is that okay or isn’t it? I believe it’s okay. Today, I heard about a young woman, a wife and mother of several young children who was found to have a "no cure"  dreadful diagnosis. She was told she had only months and there was nothing that would save her. Instead of taking to her bed (as her family thought she should) and becoming horribly depressed, she took her kids on a wonderful, final trip to Disneyland.

After she came back and faced the disbelief of her loved ones, she boarded a plane and went to visit the three most important friends she had. Fortunately, all of them lived near each other in one state and even though she only had the strength to visit for an hour or so with each, it was what she wanted as her final goodbye. The goodbye would be in person, not on the phone and that’s the way she wanted it. Again, her family protested that she should “rest.” Tell me what is the reason to rest when you know you’re dying?

Weekly, she went to have her hair done because it made her feel good to look good and she refused to see this as her “being in denial.” Oh, I forgot. The dying are supposed to look really sick at all times and not take any pride in their appearance? They are not supposed to wear make-up or get their hair done or dress in anything but pajamas and a robe? Interesting. I never knew that and I don’t believe it for one moment.

What is wrong with wanting to feel good even if you know you have a terminal illness? I once had a medical professional whose husband had terminal lung cancer ask my advice.  She had an opportunity for the two of them to take a wonderful trip to Europe. She asked me what should she do. I told her to take her husband and to go and enjoy every minute of the trip. She did and six months later he died, but she was very happy that they took the trip because he enjoyed it so much. It is a memory she still cherishes today almost a decade after his death.

Also today I saw a video on YouTube that reinforced how I feel about making people feel good about themselves when they know their bodies are failing them. I’ve put a link her because I think that more people need to see it. The dialog is in French, but it has English subtitles. Watch it and learn to toss off the rigidity and accept a new sense of compassion that keeps life in life for the dying.