The reality of existential suffering

Often, in discussing end-of-life matters, we read references to existential suffering, existential distress, and existential dread, angst, anxiety, anguish, or crisis.  These terms can be traced to the area of philosophical thinking known as “existentialism,” which emphasizes authenticity in one’s life and focuses on one’s self-identity.  

Both theologians and psychologists have been interested in such concepts and themes that appear often in existentialist writings, such as dread, alienation, absurdity, boredom, freedom, personal choice and other concepts that are related to meaning and purpose in human existence.

If we use “existential suffering” as a stand-in for all of the related terms we use, it will help us discuss what we may mean by them.  Certainly, distress, dread, angst, anxiety, anguish, or crisis all suggest suffering at least in a mental or psychological sense, a kind of suffering that all people encounter at one point or another in their lives, or even daily.  Some existential suffering can be mitigated through changes in circumstances or with the help of others, but when one is dying, whether slowly or rapidly, one may wish to forego the suffering whether or not there may be temporary relief for it.

As an example relating to one medical condition, I have prepared a somewhat elaborate supplement to my advance directive to prevent or eliminate what I see as existential suffering if I become demented, as have others here, here, and here.  At least, my current self has determined that a demented existence is one that I dread because such a circumstance would deprive my life of meaning and purpose.  My demented self, by virtue of dementia, may not have the same concerns, but while I am rational and competent, I want to make decisions for my demented self, should that malady befall me.  No one else should be able, legally or morally, to make that choice for my life, unless I give someone that authority.

This is important to me because of what I have learned through my personal experiences with Alzheimer’s, the most prevalent dementia.  My view is that living with moderately severe dementia would destroy any meaning in my life and would rob me of the identity I associate with being a human being. I don’t want to be spoon-fed, to not recognize my family and friends, to be unable to carry on a meaningful conversation, to lose the ability to read and write intelligibly, to be deprived of meaning and purpose in my life, to become semi-conscious, or to have precious resources expended to keep my demented self breathing and eating.  These are my existential concerns about dementia.  No amount of wonderful care will diminish them.  I find no meaning in such suffering; hence, there would be no reason to continue to live.

Many opponents of voluntary assisted death (VAD) or medical assistance in dying (MAID), minimize or criticize the importance of existential suffering in the lives of those who live in jurisdictions that have VAD laws and who choose to use those laws to hasten their deaths.  They point to the reasons identified for hastening death.  In Oregon, the state reports that the most prevalent reasons for using Oregon’s VAD law (according to the doctors who have examined VAD law participants) are–

•  Losing autonomy

•  Less able to engage in activities making life enjoyable 

•  Loss of dignity 

•  Losing control of bodily functions 

•  Burden on family, friends/caregivers 

•  Inadequate pain control or concern about it 

•  Financial implications of treatment

These are all existential concerns because they create existential suffering in the lives of VAD participants, all of whom are dying.  Existential suffering can be just as important as physical suffering, as noted by palliative care physician Paul Rousseau who has concluded that “existential anguish can be equally debilitating and may warrant aggressive palliation,” i.e., palliative sedation.  

If I want to avoid irremediable existential suffering, that should be my choice.  If I am dying, whatever the cause, these existential concerns still exist.  Changing them is impossible and futile except in very minor ways that would not eliminate my suffering.  It is not possible to know whether someone with late stage dementia would suffer as much as my current self from these existential concerns, but I don’t want to be burdened by them at any time during my life, including if I have dementia, a condition that leads to death.

The same existential concerns can arise from any terminal condition, whether death is expected within six months or over a longer period.  Such concerns can affect those with irreversible medical conditions (e.g., ALS, Parkinson’s, Huntington’s, Lewy Body Dementia) who reasonably expect both physical and existential suffering as the disease progresses.  The expectation alone can create existential suffering.  

Some existential concerns may be ameliorated for a while through medical treatment, counseling, or personal psychological adjustment, but if one can see death in the near future, such concerns should be accepted as legitimate and not stigmatized by those with different values or views.  For my life and my body, my values should control. 

If liberty and personal choice have any meaning, all of us should have a right to decide for ourselves the best way to deal with existential suffering.