I believe that peace has been made on this issue. I snapped in a moment of extreme stress and did not stop to consider how the people who acted morally and responsibly might view what I thought, at the time, was nothing more than setting clear boundaries. I stand by my decision to set clear boundaries with those people who approached me hatefully and inappropriately, and I am deeply sorry for those who didn’t but felt drawn into something that I simply did not see coming. You may all rest assured that this is not a game to me, either, and that I’m not playing.
Portions of the lengthy explanation of my position come from my blog, trimmed and edited to fit this specific situation. It’s directed at anyone who wants to learn about what it means to be deemed to be the person “in control” of another’s healthcare decisions. I really hope that some of you will read it and consider some of the positions you hold in general, and I hope that some people who are considering accepting the role of healthcare proxy, POA, or other decision maker for a member of your family will feel valued and supported and a little less sad.
Sometimes being a health care proxy means making decisions which are unpopular. Sometimes is means making decisions that other people do not understand or that people who are not directly involved in construe as terrible or heartless. Sometimes it even means being the person who takes the brunt of decisions that you may or may not agree with, but that you enforce unilaterally just the same when the person whose decision it was is not in a position to speak on their own behalf.
A great many of you are strangers to the dynamics of this situation. A great many of you may think that I act without compassion, and you are entitled to your feelings. I’m not here to argue, but if this is going to be out there, then I’m going to take it as an opportunity to educate. Being placed “in charge” of a person is a sacred responsibility, and not everyone is equipped to take on that responsibility. It is not one I would advise taking on if there are others within the circle who are willing or able to do it; in my case, I was asked to take the roll because there was not another person immediately available who had thick enough skin to make unpopular decisions in spite of the likelihood of pressure, public and private, to alter those decisions. It turns out that maybe my skin is not as thick as I thought is was, as I’ve shown cracks not typical of my usual self. It has already been an experience unlike anything I thought I was prepared for, and it hasn’t even been that long.
Every family has difficult dynamics, and if you do not live within those dynamics on a daily basis then you cannot fully appreciate why decisions are made and enforced. To speak of compassion is subjective within any situation. In this one, to “show compassion” to one person is to deny that compassion to a number of others. In this case, the person whom I have denied contact has admitted to engaging in acts of violence against other members of the immediate family, including issuing a death threat to a then five year old. That person now claims redemption while also minimizing the extent of what actually occurred. I don’t discuss that publicly or often and I am not happy to be doing it now, but it is a highly relevant contributing factor here. To show compassion to that one disruptive person is to deny compassion to the other, who is still a child. How am I to make a decision that is not compassionate to that child’s right to feel safe when visiting her father in the hospital? To show compassion to that one disruptive person is to deny compassion to that child’s mother, who was also a repeat victim of the same person’s intimidating and violent behavior? How can I make a decision that is not compassionate to a mother’s right to keep her child and herself safe? How can I show compassion to a perpetrator, however contrite that perpetrator might claim to be in the too-late aftermath, when the only way to show what a group of people she has chosen to contact and involve deems to be “compassion” infringes on the rights of the victims that were initially acted against?
The issue of what decisions a proxy has the “right” to enforce is equally complicated. I technically have the right to enforce whatever boundaries I see fit, regardless of my father’s wishes. I choose not to do that. I choose to act within the slim parameters of what I was directed to do as much as I am able to do it. What I have been directed to do may sometimes seem to be in direct contradiction with public opinion. It sometimes seems to be in direct contradiction with items he expressed to other people in his life, but not to me. I cannot, in good conscience, act within the parameters of what is popular or even what he may have expressed to others. I can only act within the parameters I have been directly given; there may come a time when I act without those parameters, but only when directions have not been set for current events. For example, I initially only made contact with a very few people within the directives I have been given; I had not intention of contacting anyone else until more information indicated that I should. However, there came a time when my father was in a febrile state and made non-lucid phone contact with a handful of other people who I had not contacted. I chose to call those people and assuage their obviously founded fears. When the fever passed, I informed him of which people had been contacted in the spirit of follow-up to what must have been a very frightening and confusing situation for them. He was not necessarily pleased, but he chose to support that decision and continue to leave me as his proxy.
My parameters do not include discussing any of his private information publicly. In this case, I feel that it is appropriate in the interest of education, and my father knows well that I am an educator. The very fact that this public discourse is occurring is in direct violation of his wishes; the fact that members of his family and community who were never intended to be included in this private situation, and especially the fact that strangers are offering judgment, is in direct violation of his wishes. Every person, myself included, who has stated an opinion of whether or not anyone has a “right” to speak on his behalf is acting with the presumption that they have the right to determine which information is to be shared by and with whom. However, it is happening. The bell cannot be unrung. That bell can now only be used as an opportunity to judge or to shed light on a rarely-discussed topic, the topic of healthcare directives and proxies. I hope none of you take offense at my utilization of this opportunity but, again, my father is well aware that I am an educator and that this is precisely the type of opportunity I like to take advantage of.
Suffice to say that to share certain information, even with one of his children, is against wishes that were expressed to me as his proxy – unless and until certain dire, predetermined circumstances clearly present. Those circumstances have not presented. Were I to utilize my right to make his decisions with disregard not only to the rest of the family, but with disregard to his explicit requests, then I would not be acting with compassion towards the most important person in this scenario. Public discourse aside, bowing to the pressure that was exerted on me by outside forces would be putting an unfair stressor on an already stressed man and I strongly feel that, as his designated proxy, I must be willing to accept stress onto myself to spare him. How am I to make a decision that is in direct conflict with the person who placed me as a proxy in the first place? Should I bow to public pressure and negate the sacred responsibility I agreed upon when I agreed to speak for him? To do such a thing would be morally abhorrent to me; were I willing to do that, I would not have agreed to act in proxy to begin with.
While it has been presented, not just here but in numerous unpleasant conversations yesterday with people who became less understanding as the day and protestations wore on, that I am nothing more than a control freak who is excluding people based upon my own whims, in reality I have no desire to be in control of anything. Sometimes, family members do just that – they revel in the authority granted to them and use it to oppress other members of the tribe. In this case, I did not lobby for any power. As the person who has provided care and support for the last decade, it was requested of me and I acquiesced. I can understand that for some of you this issue may hit close to home. I appreciate that there may be people who responded to this very thread who have been cut out of intimate family moments by someone who was simply hungry for power. However, sometimes we all must consider that everyone has a unique life experience and that your home is not mine. In this situation, I do technically have the right to arbitrarily decide who gets access and who does not; I am not, however, exerting control with regard to what I necessarily want to happen. I support my father’s right to limit the availability of information regarding his condition, even within his own family. I support his right to withhold information even from me if he sees fit. I support his right to control his own life if he gets better and I support his right to control the world’s perception of his death if he doesn’t. Being “in control”, to me, does not mean truly being in control. It entails acting with my best judgment within the parameters he gave to me when I agreed to take this role. That means that whatever the physical situation, I don’t get to act within what I feel to be his best interest or even within what makes me feel most secure or happy. It means that I honor his wishes to the end, as much as I am able to within my capacity as a member of the healthcare team and family.
If I’ve been long, I apologize. If I’ve been offensive, I apologize. I wish none of you ill will, and I greatly appreciate the vast majority of you who voiced support and love for a person who needs it without offering an attached judgment of the situation. I genuinely hope that none of you are ever placed in the untenable position that I am in or in the one that spawned this post. For those of you who judge me as uncompassionate or power hungry, I truly hope that you never find out what it is to be placed in charge of a private situation that becomes public fodder. For those among you who have expressed that I will get what’s coming to me or will pay in the end, I hope you are right. I welcome what is coming to me because, whatever else I have done, I have and will continue to “honor thy father” and to honor his wishes, not the wishes of people who were never involved to begin with. This may be long and overly detailed for some, but the issue of health care proxy is one we all must consider at some point. It’s dear to me as someone who has both been a healthcare proxy and who has needed someone to act on my wishes when I was medically not able to. I hope that if any of you encounter situations where you have to interact with one, where you have to act as one, or even where you end up needing one for yourself, I hope you will take a moment to reflect on what you would really want done in the event that you were a proxy or needed to have one act of your behalf. I hope you all have the ability to consider all the important issues from a more rounded perspective, and I hope that you take something away from this baring of everything private and dear to me. And if you take nothing from it at all, then I guess I just hope you don’t think reading this was a waste of your time.
Acting as a healthcare proxy is hard. It’s complicated and it’s almost always messy. It can make friends of enemies and enemies of friends. And, if you love someone enough to make the decisions and take the heat for them; it’s sometimes totally worth it.