Terminal Mental Illness

Recently I have begun thinking of mental illness in a bit different way.  Now let me say from the outset that I am a layman, I am not a mental health professional.  But at the same time, I have had intimate involvement with the mental health system in our province for over 20 years.  Sadly, for the most part, that experience has been quite discouraging, but that is another matter altogether.

The different way that I have begun to conceptualize mental illness parallels the way we have thought about physical illness for many years.  There are some physical diseases that are quite curable with appropriate treatment and there are other physical illnesses that even with the most advanced treatments, predictably end in death.  We call these terminal illnesses.  So the question in my mind has been, are there terminal mental illnesses?

Well, other people are beginning to think along these lines as well.  Debra Stang, wrote an article in August of this year titled, “Terminal Mental Illness – Is Suicide Ever Inevitable?”  In the article she reflects on a woman, she called Elena, who from the time she was 15 till her death at 52 struggled with a mental illness that often pushed her to attempt suicide.  She was a woman who was open to and tried everything: medication, psychoanalysis, faith, holistic therapies as well as experiencing a number of psychiatric hospitalizations.  She wanted to experience what the mental health field calls recovery, yet year after year the depression grew more intransient, medications stopped working, attempts at addressing her issues led nowhere and she eventually dies of suicide.

One definition of terminal illness is “an active and progressive illness for which there is no cure and the diagnosis is fatal.”  Doesn’t this definition fit some mental illness?  Occasionally despite mental health interventions, the mental illness grows more pervasive, consuming more and more of the person’s energy in attempts to manage and survive the symptoms.  I know people with mental health conditions that are almost always acute.  The calms between their “storms” are getting shorter and shorter.  The efficacy of every mental health intervention is becoming less and less effective and there is a certain predictability that death will occur.  The mental illness is progressing and no matter what is tried there is no hope for recovery and the prognosis is clearly that this mental illness will end in death.

In Elena case, several of the physicians that cared for her predicted that her mental illness would end in death and reported their prognoses in the medical records that were kept. Was Elena’s depression a terminal illness?   Some in the mental health community would not be willing to admit this, but don’t some cases of mental illness mirror the characteristics of a terminal illness quite well?

Now, I know some would think that thinking this way about some mental illnesses is counter productive and flies in the face of the Recovery Model that is presently in vogue in the mental health community in Manitoba.  I know that an immense amount of energy is being put into trying to de-stigmatize mental illness in the general population.  I believe there is great merit in the Recovery Model of addressing mental illness and I continue to do my small part in trying to de-stigmatize mental illness, but neither of these approaches to mental illness rule out the possibility of beginning to think about some cases of mental illness as being terminal in nature.

Maybe the question is, “If we begin acknowledging that some mental illnesses become terminal illnesses, what impact would that have on the treatment and care given to the mentally ill?  Some might fear that making such an acknowledgement would result in the mental health system “giving up on” some people suffering with intractable mental illness.  But, maybe, just maybe the kind of compassion and care that we have learned to extend to people with terminal physical illnesses would be made available to those suffering with terminal mental illnesses?  Maybe instead of a “blaming frustration” that I have seen expressed towards those with intractable mental illness, there would be a new paradigm that would give way to the same compassion we have for those suffering with terminal physical illnesses?

Or maybe another question that would be raised in opposition to considering some mental illnesses as terminal is the fear that we would be opening the door to saying suicide is OK or even to physician assisted suicide.  I suppose that is one approach that could be taken.  It certainly is gaining ground in the terminal physical illness community.  However, the palliative care community has led the way in developing both the mindset and improved techniques and treatment regimes just for terminally ill people to provide comfort and end of life care.  Would it not be legitimate to believe that with this change in paradigm a whole new approach to caring for the terminally mentally ill might also result in the development of new approaches to caring for folks afflicted in this way, as it did in the care of the terminally ill physically?

Or there might be the concern that if we establish criterion and begin understanding that some mental illnesses are terminal that those suffering with them will feel abandoned.  Frankly, in my experience working with people suffering with mental illness they already and almost continually feel abandoned.  Many living with an intractable mental illness already feel as if the mental health professionals have given up on them.  They already feel as if there is no hope and on top of that many feel as if it is their fault that there is no hope.  This is tragic.  Do we communicate to a person with terminal cancer that it is their fault?  Even when the cancer is in the lung and the person has smoked for fifty years we have compassion and offer palliative care that is non-judgmental.  But I don’t see the same in the attitudes of mental health workers towards those with terminal mental health conditions.

I personally believe that there are some suffering with mental illness that believe in their hearts and think about there disease in a terminal way.  Many with mental illness try to get help, many try many times and try many things and after awhile, it isn’t hard to get the impression that this is hopeless, that nothing will change this reality and that the choices are to learn to live with the illness, which many do, some more successfully than others, or well, die from the illness.

I suppose I am just wondering if some of the deep and troubling anguish that many suffering with protracted and deepening mental illnesses might be somehow mitigated if there were a conceptual change allowing for what seems to be the fact anyway that some mental illness is terminal.