As the memorial eve of Tracy Latimer’s death approaches (October 24th) I find that I still feel sadness for her passing and am drawn once again into the realm of existential angst. For those who are not familiar with the case, Robert Latimer, her father, was convicted of murdering his 13 year old severely disabled daughter by asphyxiation.
He maintains that this was a ‘mercy killing’, that his
daughter’s life was primarily defined by her suffering and that the immediate
future would be even worse as the medical intervention recommended to alleviate
some of her physical pain would, in and of itself, cause severe pain during the
lengthy recovery period. He made his decision to give her rest, or, as one
popular culture writer put it in such coarse and grisly term, “The long, hard
goodbye”.
Many rightly state that we should not judge others and
certainly not until we’ve walked in their shoes. Truly knowing another man’s
life and suffering, if we are to be honest, is nearly impossible. Nearly. I’ve walked in Latimer’s shoes regarding
suffering and sacrifice, agony and even despair and continue to do so. My son
suffers multiple severe bouts of pain on a daily basis from several sources. One
of them being the exact same condition that Tracy Latimer suffered; her
dislocated femur. When the hip is no longer a weight bearing joint the bone
will grow in directions it normally does not which can then result in any
movement of the head of the femur in the joint socket to cause pain akin to
being stabbed with a knife and then having that knife twisted. There is no medication which can completely
alleviate this kind of pain. My son also suffers constant discomfort from his
severe scoliosis and extreme kyphosis as well as bowel spasms from a triple
intestinal rupture and subsequent life-saving surgery. The pressure on his
spine is so intense that it literally causes his entire body to twitch from pain.
It even lowers his threshold to seizures.
So I might not be faulted if I were to see my son in his
obvious struggle with pain and question if his wellbeing, as a person, is not defined
by his suffering. But I would be wrong, for several reasons. Firstly my son also
experiences joy and contentment because he is loved so much. Secondly, as I wrote in a previous post, his
limited understanding of the world spares him a great deal of mental stress
that we as ‘regular folk’ experience as some degree of pain, often on a daily
basis.
In the Netherlands it is now legal for any child over the
age of twelve to request being euthanized when facing a terminal condition. The
protocol for this to occur requires that both the parents and two physicians
must concur that ending that child’s life is in their best interest. The key
being that the request must stem from the child’s wishes. While very real, the
argument for or against such a concept, as a principle, should be left for
another time. There might be many cases where the time it takes to initiate
this protocol and see it through will take long enough that the child will already
have passed away, but in practice once the decision to euthanize is taken, the
process is usually expedited. More so, it was recently passed into law that if
the medical staff feels that the parent’s suffering is considered to be overwhelming
because the child’s dying process is taking ‘too long’, the physician has the
right to expedite the process without consent or consultation with the
parents.
Each such situation, could be said to require serious
consideration on an individual basis. But laws are enacted to help outline
behavior in such situations in general and are certainly used as such to
the extent that physicians in Holland can raise the subject of euthanizing a
child with a great sense of confidence. Here, keep in mind that the entire
basis of the ‘Groningen protocol’ which gives those rights to physicians in the
first place, is founded on the concept of ‘unbearable suffering’, the greyest
of grey areas.
So in looking at this we must tread carefully, not to judge
and we must be wary in making broad and sweeping statements about what is right
and what is wrong. In other words, it’s complicated. But sometimes we are asked
our opinion (or offer it unasked) and we feel we must mark the boundaries that
distinguish ourselves from an opinion which we deem too far on the wrong side
of reason to be able to sit quietly as though it doesn’t really have any relevance
in our lives at all.
As I see this matter (and the connection to Tracy Latimer
will be explained shortly) I would not want to bring my son to Hospital, for
his pain, in order to implement some medical procedure which would possibly
result in more suffering, nor bring him in to an establishment for
palliative care, where the atmosphere, not to say the officially mediated
protocol, encourages euthanasia as a solution, unless I were convinced, knowing
my child, that this is what he would want. But here is the crux of the matter; I
don’t know, nor can I know what he wants in this regard. Like Tracy Latimer my
son has no way of communicating even the most basic of ideas, let alone concepts
of life and death. Some will rightly
think, that here is exactly, as parents, that we must exercise our role as
guardian in making a decision on our child’s behalf. It is the most extreme
example of such guardianship and the most difficult decision a caregiving
parent can make. Naturally it is appealing
to look to the medical establishment for guidance, to actually shoulder some of
the sense of responsibility since they deal with these situations on a nearly
daily basis, while a parent will hopefully never encounter this scenario more
than once. Obviously family can be
consulted, perhaps friends. So far it should be clear that this is an involved
process that has many moving parts and should be given the utmost of our
scrutiny. The decision making process should not be one that is left entirely
to one individual. Yes, we must sometimes follow our hearts even if our minds
scream the opposite, but exactly because this is the most tragic of
circumstances, the decision is greater than any one person, should make .
Tracy Latimer’s mother maintained that she knew nothing
about her husband’s plans to end their daughter’s life. Perhaps they discussed
it obliquely, a small almost random comment thrown into the conversation, to be
dismissed with a shrug or caught by Latimer’s wife, held for a moment in a
frown and then deposited deep into some inner crevasse of despair. Regardless,
Tracy Latimer lost her life, by force, without the ability to express any
opinion on the matter, without any safeguards of the medical community or the
comfort of support she might have gotten from the rest of her family in
approaching the decision. Despite
hurting deeply in the face of his daughter’s suffering, Tracy Latimer was never
given the benefit of doubt and, I feel, her father added his suffering to hers
in making his ‘lone gunman’ decision to end her life. And that is simply wrong.
I am in the same situation with my son, and the only "other" I would consult beyond family and medical personnel would be God. In fact, I would consult Him first. And, so far, He has let me know that everything we can do for my son on every level should be done to keep him alive. So many miracles have happened in that space that could never have been anticipated and the greatest of these is my development into an appreciative being who lives in the present moment. Acceptance and gratitude have brought exquisite peace and I am privileged.
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