I have been hospitalized several times over recent years. And of course, one of the questions regularly asked is “do you have a living will or medical proxy?” The purpose of either of these two acts, is to make sure that should a situation arise while in the hospital, that you are no longer able to make a medical decision on your own, for any reason, that your wishes are known before hand, and enforced.
I am not too familiar with each specifically, although I know in recent years, I have had to deal with both. I do have a living will that was created a few years ago, which specifically stated my wishes as far as my care should I be unable to make the decisions on my own. It is also expressed as an “advanced directive” such as artificial measures meant to prolong life or other extreme measures when there is no hope. Note to self, I have since filed for divorce, so I should probably change some of the directives and who carries them out.
A medical proxy on the other hand, is a person who actually and legally makes the medical decisions on the behalf of the patient. In most cases, the proxy will simply follow the living will, if that directive has been shared with the proxy.
One of the first things, and actually smartest things that my father did, when he was diagnosed with lung cancer, was to make sure that steps were in place, should anything happen to him, that his wife would be cared for, and what little assets he possessed would be protected. My brother would be given all legal power through what is called a power of attorney, in other words, if my father were unable to make any decisions, or even pay bills, my brother had the legal authority to make those decisions.
The same decision making power medically is given through a medical proxy. Again, the responsibility to make sure that all medical wishes are followed through. In my case, my father asked me to take on this task, not jus because of the “what if’s”, but also, he knew that I would be his strongest advocate to explain to him, things that there happening, things that needed to be done, and to make sure that he got the best care.
Both power of attorney and medical proxy can be very frustrating positions. Under normal circumstances, only one person is selected for either, and just as when only one family member is selected as an executer of a will, feelings can be hurt, and actually complicate the enforcement of important decisions. Then there is still the time period, when the patient is still fairly in control of their mental faculties, and the patient either complicates efforts or even sabotage efforts.
But when a patient is in need of both a power of attorney and a medical proxy, unless it is a long term medical situation, the only other time that these positions will be in need, are during the stage of life, preparing for death. Now I want to make sure that I am clear, any comments that I make in this post, are not a reflection of what happened with my father and I or any family members. I am actually in communication with a couple of friends who are in the very situation right now. And “Paul’s Heart” is about helping others and so, I decided to write this post.
Anyone who takes on the task of having power of attorney or medical proxy has to be counted on, by the patient, to carry out the wishes and legal needs no matter what. Feelings of others are bound to be hurt, decisions are going to be questioned, but in the end, having followed what a POA or MP were charged to do is what matters most. Those two titles are charged with a responsibility to do what the patient is not able to do, and wants met.
Once a patient’s status gets bad enough, that hospice gets involved, the two positions of power of attorney and medical proxy take on even more importance. Emotions among family and friends are likely to escalate, as only the people involved in the decision making only know all of the facts involved in the care, and legally, this is important to protect the patient’s privacy rights. Even though everyone could be related, protecting that privacy may have been important enough to the patient. As the time drawers near, it is important for both of these legal representatives to understand just how important their roles are and that there will inevitably be conflict.
While my brother was my father’s power of attorney, I was my father’s medical proxy. My father had his reasons for appointing us this way. And I believe the two of us both agreed. My father’s decision to ask me was based on the fact of my experience in the cancer world. But as time went on, and his cancer got worse, my role went from just questions and information, to decisions. Eventually the decision would have to be reached between my brother and I, to have my father placed with hospice. With his mother, my stepmother involved, this was going to be the most important decision of all. For the first time in nearly 40 years, our parents had the possibility of being separated for the rest of their lives unless we could locate a facility that could accommodate the levels of care necessary for each of them.
Once the nursing home was found, and yes, we were able to accommodate both of our parents, next came the hard part, filling out the paperwork, and agreeing with the new level of care that would be given to make our father as comfortable as possible in his final days. And this would be the most difficult. Because with hospice involved, and my father’s living directive, it was clear what my father wanted and did not want. Again, my father knew I would be able to separate the role of proxy and son, emotionally this would be critical.
In a patient’s end of days, the suffering can be immense, and the person in the role of the proxy must do exactly as the patient wants. There is no room to allow emotions to factor into any decisions for to do that would only increase suffering. Family dealing with sorrow, in spite of recognizing that death is imminent, a grieving family member will do what is normal and expected, reach out for extraordinary measures to somehow, turn the condition around, from investigating a last minute attempt at a cure, to treating symptoms, which would only prolong the suffering and death.
Hospice gets involved when death is not only certain, but imminent. There is no chance at cure. There is no last second miracle coming, and to believe otherwise is cruel to both patient and family member. And even when it is just comfort that is sought, decisions are actually made to remove medications that at one point were taken daily for daily health, trying to justify to other family members that there is no benefit to continue those medications. But perhaps even more frustrating, is if a patient, in hospice, were to contract an infection or pneumonia. There is the likelihood of family not understanding that treatment for the normally acute illness would not be administered because at this stage, there is no desire to draw out and extend the life. Really no different than if he were to suffer a heart attack or stroke. The orders are strict, there is to be no attempt to prolong the life which would definitely increase the likelihood of suffering.
The role of proxy is a difficult position to be put in. I have been in the caregiver role for twenty-five years, but my father was the first time I had been placed in the role of a proxy. I did what I had to do as I made sure my father’s wishes were honored.
Paul's Heart 