Health and Psychology

In both health psychology and neuropsychology I deal with individuals that are just coming to terms with a probable terminal illness. I say "probable" because there are always new treatments, the occasional miracle, and the occasional misdiagnosis that means there's much more time left, in some cases-years.  I also think terminal illness diagnoses is difficult for physicians.  Apart from "I'm sorry to tell you this..." they don't have the time to spend with someone to help them process.

Most people I've known that have been given a life-threatening diagnosis take quite a while to adjust to the diagnosis itself.  We live our lives as adults sort of knowing we are mortal while ignoring that fact.  We focus on the future and make long term plans.  A terminal or even a life threatening prognosis changes that.  Even knowing someone that is going through the process changes the other people around them.  It can crystalize someone's direction and completely alter how they approach things.  They have the opportunity to look at how they are living and see if it's how they want to continue living their lives.

How people approach death is, in a large part, cultural.  In the West we try to deny the existance of death and look toward life as being objective and concrete while trying to maximize a high quality of personal existence.  Death is not only unwelcome, but a process that is often frought with dispair.  For others, death is a transition to another state of being.  For some the information that death is looming large can help them refocus on what is most important that they have post-poned because they "will get to those important things later"--later has now arrived.  So there are ideas about bucket lists.  What do you want to have seen or done before you "kick the bucket" lists.  For many the news of mortality means they get to review their lives and think about who they are and how they want to go about dying.

Years ago I co-lead a support group for men with late stage HIV.  They were all too familiar with the medicine involved in their diagnoses.  Most had almost non-functioning immune systems.  At least one had so few T-cells, he decided to give them individual names.  They got together to provide support, resources, and comfort, and to plan activities with one another.  They were able to focus on who they wanted to be as they died and what they wanted to leave behind in this world as they moved toward death.  Although some had periods of anxiety and depression, most of the men focused on the time they had to do things that mattered to them.  They dealt with their relationships and advocations.  Almost all had stopped formally working.  Although one was in the process of transitioning his business to someone else and was mentoring that new person through the transition.  Many were doing art in one form or another.  Some were gardening.  Contrary to what many would suspect, for most of the meetings it was upbeat and dealt with things that mattered.

I have had several psychologist friends with terminal prognoses.  I remember one friend calling me after she had stopped working saying "I can't believe how much time and effort I was putting into churning money.  I'd work and pay bills and that was all there was to my life.  Now I have free time and I can live on very little money with only a couple of bills.  I have all this time for my son, and for what's most important to me."  Another commented to me about how everyone had suddenly become so serious around him once he disclosed his inoperable brain tumor diagnosis.  In contrast, I had asked if he had contacted "make a wish" to see if they had some version for adults--you know-the get a date with the super model of your dreams before you can't see anything anymore.  I also asked what was different for him from the day before he had the diagnosis.  He had known something was wrong with his vision, which was why he went to the doctor, but he hadn't known he was dying.  It was an existential change for him from one day to the next.  But the change was in his idea about what death meant to him.  My comment about make-a-wish, that some people objected to in the discussion group, helped him to refocus and to get a sense of being entitled to have some fun with his life in the time remaining.

Ironically, some people with a terminal prognosis contemplate suicide.  The idea is that they want to be in charge of things even the ending so nothing is ambiguous.  I spoke to a man yesterday that wanted to "just walk off into the desert to die."  He said he didn't want to be a burden for his girlfriend.  So I pointed out that his girlfriend had figured out he was going to die about 5 years earlier when his symptoms started.  She certainly knew the year before when the CT scan showed all the brain disease that was going on.  She had told him about what the progression of his illness was going to be like.  I suggested he talk to her about why she wasn't feeling burdened about his illness.  He now gets to reconnect with her and deal with wanting to be independent.  He asked me how long he would live. Most people with his diagnosis die within a year.  He's lived for 5 and will likely live a few more years, but without seeing another CT scan I can't determine how the disease has progressed apart from his symptom report.  I don't have a crystal ball with an end date popping up for him.  He's not having difficulty swallowing or breathing.  He should be able to get better pain management.  He'd also benefit from psychological treatment to help with transitioning between stages of increasing disability.  There are a lot of things he can do now that will help him manage to remain independent later.  Suicide now will deprive his girlfriend of being with him through the end.  So we talked about all that.  

Everyone copes with a terminal prognosis differently.  Please contact my office if you think we might be able to help.