October 02, 2014

Rest easy, Tracy Latimer


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.

1 comment:

  1. 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.