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A Response To Dr. G (Part I)

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Last week’s column featured a letter from a very dedicated doctor who disagreed with an article I had written on dealing with the system.  It was very clear from his letter that Dr. G. cared a great deal about his patients and their care.  

 

            Dr. G. gave us his point of view; one formed by the bounds of doctor medical ethics and hospital regulations. He discussed the role of the caregiver and reminded us that unless there is a Medical Power of Attorney or Health Proxy that has been given to the caregiver, the doctor is obliged, through privacy regulations, not to share information or allow the caregiver to make decisions for the patient.  If the patient is in charge of his faculties, it is his input alone that will determine the course of his treatment. The patient is in charge of his own case and it is only with his permission that you, as next of kin, are involved. “In fact,” notes Dr. G,  “if the patient is alert, unless the patient gives permission, privacy rules limit what you can be told and what can be discussed with you.” Further, “with an incapable patient, unless you have a Power of Attorney or Health Proxy, all control lies with the doctor and social worker.”

 

            Dr. G. went on to talk a bit about the consequences of not having a Health Proxy or POA in the event of the patient being mentally incompetent.  It seems that the next of kin is not necessarily elected as the caregiver. “If you are willing, the doctor and social worker are the ones who must decide if you are capable; otherwise, for the sake of the patient they will insist on some other arrangement, whether a professional attendant, or a facility; if necessary, they can bring in Adult Protective Services to legally take charge.” 

 

            I have often written about the need for a couple to legally establish a Mental Health Proxy or Medical Power of Attorney when we are well, or at the worst, at a beginning of a troubling diagnosis. Should chronic illness progress to mental incompetence it is important to remember that without these documents, there may be little we can do to control how we or our spouse is dealt with. These documents are not only necessary for spouses. Think for a moment of our adult children who are not married and develop a physical or mental illness.  Without these legal documents, their privacy is king. You as a parent may not be allowed important information or decision-making, even if your adult child lives at home and you are responsible for his physical and financial needs. I recently spoke to a father whose daughter with mental illness was having difficulty with a group home placement. The daughter was in her 20s. It was unclear if she had, perhaps, requested that her privacy be protected. Her parents were left out of the decision-making, even though they had to deal with the fallout.

 

            These laws have been devised to insure the safety of the patient. I thank Dr. G. for reminding us how important it is that if we choose to be involved and are trusted by the ill spouse, child, parent etc., that we obtain these documents while the person is still competent to give them. Many healthy people today will establish a Power of Attorney, Medical Power of Attorney and Health Proxies along with wills and guardianship for their children shortly after marriage. It is a precaution people hope they will never need.  In some cases where there is a disagreement on religious matters with regard to medical care or an ill spouse feels that the well spouse can no longer deal with the burden of an illness and may choose options that are not consistent with their wishes, ill spouses have chosen to give their medical proxies to people who are not related to them, but clearly understand their wishes should the worst happen.

 

            As well spouses, many of us have been expected to take over the care of our partners. This expectation came early on for many of us, as our spouses abdicated control to us, medical staff directed their questions to us instead of the ill spouse, and neighbors and friends asked us how our wife was, even though she may have been sitting right there and was more than capable of answering the question. And so over the years, the pattern of being the one to make the decisions around the illness developed.  It is so important to be aware that when the need to make these decisions is most important, we will be cut out of the loop without proper documentation, although we may still be expected to deal with the consequences of these decisions. We may suddenly find ourselves needing to prove our competence as a caregiver to people who know the persons wishes to a lesser degree than we do, but have all the legal power.


 


More on this topic next week.


 


You can reach me at annnovick@hotmail.com.

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When one is blind one learns to use Braille to read. When one cannot walk, a wheelchair gives mobility. Sign language allows a mute person to speak and ocular implants assist in hearing when one is deaf. These are all compensatory strategies that help a person function despite his disability. But compensatory strategies are not just for physical problems. Understanding our psychological weaknesses and setting up our lives to ensure that we are not tempted to repeat our past mistakes, is as necessary as any aid to the disabled.

Well spouses have often discovered that their friends and relatives, despite their closeness to the situation, often don’t realize the tremendous emotional impact living with chronic illness has on the family. With the best intentions, suggestions, ideas and criticism are offered, based on the non-experience of those with healthy families. Even when the good intentioned get a taste of the difficulties, it is sometimes not enough for them to then identify and understand what the family of the chronically ill must face on a constant basis.

Over the past two weeks I have shared letters from a therapist and a well spouse. Both of the letters gave personal insights into the process of losing hope, how we react when that happens and some ways of coping when test scores, diagnosis and just simple repetitive behavior indicate that change for the better is impossible.

Dear Ann,

I’ve read your last few articles on psycho-neurological testing (Oct.8-22) with interest. As a therapist who has counseled couples dealing with chronic illness, I’d like to give you another perspective.

Dear Ann,

Your articles on the Neuro-Psychological Testing were right on (October 8-22). My husband underwent testing twice and your articles explained it things exactly the way they were. Besides the test, we also tried therapy.

Very often when we can’t face our big hurts or big loses we focus on the little ones. We can discuss those. We can cry over the small loses, be angry at the smaller hurts even though it may look trite and sound ridiculous to others.

Over the last two weeks we have been discussing one way in which well spouses can determine whether behavior displayed by their ill partners is caused by their illness or is a way they have chosen to act. We have focused on Psycho-Neurological testing, what it can tell us, as well as its pros and cons.

Last week I discussed a question that haunts many well spouses: not knowing if the difficult and often inappropriate behavior frequently displayed by their partners are caused by the disease and therefore not-controllable, or if the behavior is a choice the spouse makes and can therefore be changed. This doubt can be the source of much frustration and many marital disagreements. One way of alleviating this doubt is by having a psycho- neurological work up done. But that path is not so simple.

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