Renee offers us the following dilemma,,,
Hannah has suffered for most of her life at the hands of her narcissistic mother Joan who emotionally abused her throughout her childhood. As Hannah grew into adulthood, she had a hard time making decisions independent of her mother and found it difficult to stand up for herself, even when she knew she was right because her mother was insanely defensive and extremely sensitive to criticism.
Shortly after she married Hannah sought counseling due to her increasing anger, spells of depression and anxiety. In counseling she learned that most narcissist rarely seek treatment as they are not aware of the disorder or are in denial about the diagnosis. The only way Hannah could cope with her mother would be to break off all ties with her or learn to manage her reactions and emotions, as well as set boundaries. For the next several years, Hannah worked at the latter. Over time, the frequency of Hannah’s exchanges with her mother became fewer and fewer and Hannah became much stronger and healthier.
When Hannah’s mom turned 70, her mother had a stroke, which she wasn’t able to recover from. As Hannah’s mom was in a permanent vegetative state, the doctors contacted Hannah to explain the situation. Hannah’s mom did not have an advance directive and it was most likely that Hannah’s mother would never recover from the stroke. Hannah had to make a decision, should she keep her narcissistic mother alive or should she let her go? There was no living will, but Hannah knew for certain her mother’s wishes as she told Hannah many times – “that she wanted to remain alive at all costs, no matter what!”
Since the mother does not have any legal documents and Hannah’s relationship is an unhappy one, I would tell Hannah to speak with medical personnel and counselors and then move the decision to the ethics board. By detaching the personal realationship the issue of the mother’s care and wise use of the medical resourses will move out of Hannah’s hands and she will be able to live with whatever decision is made.
The question is how should Hannah respond. It is clear what her mom’s wishes were: and we are still a society that abides by the person’s wishes. I’m not saying it will be in the best interest of society. We the taxpayers will be paying, and probably paying for a long time but until we “limit” or “ration” how much a we will spend on another individual either based on condition or sickness, we can’t just say, well it will cost us too much, so it does not matter what her wishes were.
Sorry Nancy, just had to add this. How much is no matter what? Who foots the bill? for how long?
As difficult as this may be for Hannah I beleive she needs to abide by her mom’s wishes “that she wanted to remain alive at all costs, no matter what!”
To respond to Dr. Thomas’s question, who should make the decision? I feel the mother should make the decision, and she did, by communicating her wishes to Hannah. However, the real question should be, for how long and at what cost should Hanna’s Mom be kept alive? Are we as a civilized society required to honor Hannah/s Mom decision at all cost? Should we do it until she dies? or should we as Joe’s wife indicated to Joe for herself, keep her alive for a little while to see if a miracle would happen? What would be a little while? You get the point. These are hard choices even when we make them for ourselves. They are even harder when we defer the decision to another either legally or by default.
Advanced directives should be the norm, unfortunately they are not. As a nurse, I see many family members having to make these decisions for their parents. I find it helpful for physicians to share their opinions and recommendations without giving specific advice. I also find that when a family member tries to follow the patients decision as closely as possible, the guilt that complicates these decisions often decreases. I believe that Hannah needs to follow her mother’s wishes, even though it might not be a wise use of health services.
In my view, the past relationship of Hannah and her mother creates an insurmountable conflict of interest for her in potentially making the decision – no matter how anyone feels about the question of this use of resources. For the decision to be made based on ethical principles outside of the emotional baggage their history creates and ultimately, I believe, for Hannah not to bear the burden of questioning the motivation for her decision for the rest of her life, the decision should be left to an outside party such as an ethics committee or another individual to be designated as a proxy decision-maker for Hannah’s mother.
Who should make the decision?
Hindsight can be 20/20, but even our class discussion this past weeeknd lead to more questions, not clear answers. There are three dilemnas that are nagging me. One, at the core is what decision should Hannah make – even if it means excusing herself from the decision Two, there is the question that BJ higlighted – can Hannah live with whatever decision she can make? Third, should the cost to the family or society be a factor in the decision making? As Joe said, my first instinct is to bring my own personal values into the decision, but stepping back, I realize that I should not be led by my own belief to avoid “costs” to society and to avoid what I perceive as a horrible quality of life.
Lynette
I know I am simplfying this but by no means simplfying or discounting the magnitude of the dilemma. If the financial “cost” of the decision is being paid by the individual then maybe its their choice to make it. I have talked to more than a few families that get concerned about the cost of a parents decision not being wise or an efficient way to spend their life savings (which might be inherited by concerned parties). If the funding source is the child/family, insurance or public funds then they need to draw a line in the sand on something like this. I have been surprised at the financial sacrifices people have made for a parents care.
Like Judith, I see how the costs to family and others eclipse financial obligations, this might be where we draw a line in the sand and begin to mourn a loss in advance or detach ourselves before someone physically passes away. We have all heard about parents that truly say to their child something like “get a tattoo and you are not part of our family anymore” and follow through with it!
I miss the classroom discussions on topics like these!
Renee,
Bill Thomas descibed the concept of “wise use” in our ethics class this past Saturday. His description suggests a health care delivery system driven by research based treatment. While a methodology for the difficult choices related to rationing of care, wise use is very applicabIe to the ethical dilemna you have provided. I would argue that inherent in the dilemna faced by Hannah is the assumption that keeping her mom alive, at all cost, is not a wise use of health care services, and funding. As we move into a new vision of health care nationally, I believe each of us will have many choices among an array of options. I do not see “keep me alive at all cost” as one of the choices.
Tom
My first view was to insert my own personal view and that is we should not sustain life, even of a loved one at any costs. Then I tried (hard) to put my business head on and we should honor her wishes. I agree with Judith’s comments and she did a good job assessing the situation. I asked my wife about staying alive who has a living will and she says keep her alive at all costs as a miracle may happen. I was surpirsed and yes I have been married 30 years. When I asked again, even it takes the kids inheritance, then she replied maybe for a limited time. We are redoing our living wills soon.
Hannah should try to make peace and let the hospital decide and move on.
It seems to me that all of the information about the relationship between mother and daughter is not germaine. If their relationship had been full of unconditional love and kindness would it be more important to keep her alive? In my view, no. What is paramount to me is: There was no living will, but Hannah knew for certain her mother’s wishes as she told Hannah many times – “that she wanted to remain alive at all costs, no matter what!”
I assume that the expression “at all costs” does not necessarily relate to finances. Additionally, I assume the financial burden falls on her mother. In my view, I would suggest that erring in the direction of the wishes of the mother is most important. Imagine if their relationship had been lovely, and her mother wished to end her life while her daughter wished to sustain it by a ventilator and all matter of intrusive medical interventions. Should her daughter insist that she remain alive? Nope. IMHO, respect her wishes irrespective of their past.
I appreciate the set up of this dilemma as it tells the observer that whether or not there was an advanced directive in place, this would be a difficult decision for Hannah because of her relationship with her mother.
Hannah, despite her guilt has to make a practical decision for herself and her mother. Her mother’s wishes are clear. However, her mother, unless she is financially flush, cannot decide to encumber Hannah financially, indefinitely. If the government is going to bear the costs, indefinitely, then I think Hannah has some time to think of the cost to the larger system given that there is no hope of recovery. There is definitely a cost to society in the lack of an available bed and the medical resources used to keep Hannah’s mom alive. In a situation such as Hannah’s, I think they are secondary.
Hannah should pause, make peace with herself and her mom. She should not put herself in debt for her mother’s care. Once that peace is there, she can figure out what is the most dignified way to let her mom go and begin the necessary transition.
Renee,
Hannah’s decision is a lose, lose situation. If I were in this predicament I would ask for advice from a counselor of trustworthy friend. To respect the mother’s wishes or let her go and live with that decision. As an outsider it is easy for me to say let her go but then again she isn’t my mother!
Renee,
Reading your dilemma reminded me of an organization called Aging with Dignity. They have a 5 Wishes workbook that can act as a living will. Of course at this point, it’s a coulda, shoulda, woulda situation. However, this reminds me of Rick Moody’s elderly friend that told him he absolutely didn’t want to die in a hospital but went into cardiac arrest (I think). Rick called the ambulance. Was it the right thing to do? Maybe. I can’t help but comparing Hannah’s situation to Rick’s. What are the implications to Hannah if she pulls the plug? Are there any other family members that would have a say in this situation?
This is a very delicate situation because of the past abusive behaviors of her mother. It puts Hannah in a very difficult position. I think it would be good if she consulted with her counselor before making the final decision. Hannah is very clear about her mother’s wishes with or without a living will or advance directive. If she chooses to let her mother go I think she has to make sure it is a decision that she can be comfortable with.