Thursday, May 17, 2012

I can predict your future

“How long does she have to live?”  I found myself sucked in to wanting to ask this question when Emmalee, my nine-year-old, was diagnosed with liver cancerDo we always get an accurate and helpful answer when we ask medical professionals to predict the future?  I wanted to know what the averages were, but didn’t want to be pushed into some timeframe or worse have Emmalee believe she only had a certain amount of time left. 

In my book, “Dragonfly Wings for Emmalee”, I described an experience I had with a doctor who barged into Emmalee’s hospital room and proceeded to tell me, in front of Emmalee, that she had six months, a year, two at the most to live.  Needless to say I was very upset about this and I asked to the doctor to step outside.  This interaction occurred right after her first, all night IV drip, of chemotherapy.  It was obviously totally inappropriate to do that in front of Emmalee, who was only eight at the time.  Second, does any doctor have the right to be that specific in telling a patient when they will die from and illness?  Is it in any doctors or patients best interest to be that specific about their future?   

While working as a counselor in the mental health field for the last 20 years, I would get asked periodically to predict what the grieving process would look like after a client experienced a loss.  I remember one woman who was struggling with the loss of her daughter, telling me that her therapist told her that it had been a year and a half since her daughter passed and she should not still be grieving.  I have had a number of clients tell me similar stories of counselors telling them how long they should grieve for and how they will and should feel throughout the grieving process.

In 1969 Elizabeth Kubler-Ross MD tried to answer these inquires about grief and loss with specific stages that people might go through while dying and then after a loss.  Denial, anger, bargaining, depression and acceptance are the five stages she introduced to the public.  I think in part these stages came about as a result of wanting to help and predict for people what might lie ahead for them while dying or after a loss.  It also gave therapists a way to try to build rapport with their patients by telling them, “I know what lies ahead keep coming back and I can guide you through these stages and figure out how your emotions fit into these stages.”
I think there are two problems that are going on here.  One is that people who are in the helping professions want to feel intelligent and have all the answers so they get sucked in to offering answers to these prediction questions.  Second, consumers of health care are asking for specific answers that might not be readily available.  As consumers we need to not get sucked into asking for predictions of the future but asking more specific questions like, “What have other people who have lost a child experienced and how did they get through it?”  Not how long will it take to get through the grief.  If a person is told a time frame it may hinder potential growth or if their not done grieving then it could cause them to feel something is wrong.

Before my wife died in 2003 and then my daughter in 2009, I used to teach clients about the stages of grief.  It was all that I knew and had been taught in graduate school.  I will never again offer up these stages to clients.
Why does it hurt people to predict so specifically what stages they may go through after a loss?  It may provide false hope for their future or could provide a dim picture of their future, depending on their psychological makeup.  It can stifle the client’s emotional growth.  What if they have panic and anxiety as their paramount feeling they experience and they are told they will have anger and depression?  What if they get to acceptance and don’t stay there?  There could be a hundred what ifs here.

How should doctors and mental health professionals handle these type of inquires?  First let me address doctors.  Let go of your ego.  You don’t need to pretend that you have all the answers and that you can look into your crystal ball and predict the future.  I think you believe that it makes you feel more intelligent and you believe it helps your clients trust you if you get their future right.  It does the patient a disservice and may make you look very bad if your prediction doesn’t come true.  To educate a person who has just been diagnosed with a terminal illness or just got out of knee surgery, about the average recovery times or averages as far as how much time others have lived and word it in way that is not an inevitable prediction  is enough.  (Along with all the post op do and don’ts)
For mental health professionals, share with your clients that any emotions are okay to experience.  Even if a client doesn’t feel sad or any feelings at all, after a loss, it is okay.  Ask your client what feelings they are having and normalize these for them.  I like clients to find their metaphor.  Ask them what comparison or even a song that might best describe what they are going through.  It helps them soul search a bit and then allows them to use this metaphor to help others understand them a bit better.  The metaphor may change over time.  I described my feelings of loss like falling off a cliff.  The feelings can come on very quickly and can be very intense, until I deploy my parachute.  People can relate to that feeling of panic of falling off a cliff because you can imagine what this is like or most of us have had the dream of falling off a cliff.  For more coping skills and thoughts about grieving a loss they are outlined at the end of my book, Dragonfly Wings for Emmalee.

For us health care consumers, we need to not expect health care professionals to predict the future and need to stop asking them to do so.  We can ask for averages, but need to be careful not to believe this is a prediction.  Ask more here and now questions i.e. Are these feelings or pains normal?  What can I do to lessen the intensity of these feelings or pain?  Don’t ask anyone to predict the future!

Monday, May 14, 2012

Does the pain ever go away?  I was going through some photos and found this one of Emm and her friends taken a few months before she died.  She looks good and healthy, other than the obvious sign, her baldness, she has cancer.  Tears still flow at times, but to some it means I don't have faith in God or the atonement of Christ.  Just because I miss or still cry, does it mean I don't have faith?  I truly wonder if only those who have lost a child understand the pain that can come on so suddenly and feel like and emotional knife is stabbing into my mind.  I don't focus on the pain, but it comes quickly and can leave just as quickly.

There are the cool reminders that sometimes cause a broad smile to sweep across my face and even laugh.  I love those times.  I don't know if I would have accepted the range of conflicting emotions if I had not been a counselor for 20 years.  I may have been one of those people thought to themselves, "Wow, this person is dwelling way too long on this loss of his child.  He needs to get over it." Interesting how life experiences allow us to gain such depth into issues that were never even conceptualized in our youth.  I would have never even imagined I would have experienced the things I have when I was in my youth enjoying sports, food and fun.  However, I realize that life is what we make it.   

Thursday, May 03, 2012

Emm's friends express their feelings about losing her.