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.