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I have been re-reading one of your columns (Dealing with the System, December 19, 2008), and I think a number of the points you made need clarification, and others I feel are misleading.
If a patient is living at home, you are the caregiver. If the patient is in the hospital (or another facility) you are not – you are (perhaps) the next of kin. If you hold Power of Attorney or Health Proxy and the patient is not mentally capable, you are the one who can make the decisions. If the patient is mentally capable, or if incapable (and) you do not have Power of Attorney or Health Proxy, technically you have little control and little say over their care. In fact, if the patient is alert, unless the patient gives permission, privacy rules limit very much what you can be told and what can be discussed with you. And with an incapable patient, unless you have Power of Attorney or Health Proxy all control lies with the doctor and social worker. If, for instance, you want to change doctors but the patient does not, you can’t.
As for being a 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 can 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.
Having said all that, most doctors will want to speak to the family members, to get their input and to explain the situation. Of course you are correct that some mutually convenient time should be found, if the situation allows (that is, if some instant decision is not needed).
But while you do say, “You need to know the practicality of all treatment ideas,” and so on, earlier in the article you ask whether it is practical to educate yourself and get all the information. My answer to that is yes! If you are the caregiver or otherwise in charge, you must absolutely do your homework. True, not being a doctor you may have some difficulty knowing what is relevant and what weight to give to various points; but you must do your homework. Here are a couple of examples to show why this is so.
Example one: There is a certain procedure the doctor believes should be done. He needs consent and you are the person who has to decide. What if there is a risk involved? Either you know your stuff, or you can ask the doctor to explain it all to you. Or you can just trust him and authorize him to do whatever he decides (or, of course, to get a second opinion). In one case I remember, an antibiotic was not working as well as the doctors would have liked. They wanted to try a different one; but the patient might be allergic, and if so, the reaction given the patient’s condition, might be fatal: Should they try the new antibiotic or not? Don’t you think it would be helpful if the caregiver knew what questions to ask?
Example two: A bed bound patient, recently released from hospital to a family caregiver, is seen by a visiting nurse, who checks blood pressure, blood sugar and so on. Caregiver asks what the blood pressure was; nurse responds “80 over 40; but everything is okay; you have everything under control” and leaves. Caregiver re-checks blood pressure – 80/40 – immediately calls an ambulance. Patient was going into septic shock, and might not have lasted the afternoon. Had the caregiver not asked, not been able to re-check, known what it means and called an ambulance, the patient could have died. So, yes: if you are a caregiver you absolutely must know what everything means: you are responsible. If you don’t know it for yourself (and if you are not a doctor or nurse you won’t and the internet won’t do it), ask the doctor exactly what you should know, and what things mean. If you cannot or will not do the job, the patient should not be in your care. There is no room for a “good idea, but” approach: either you are able to do the job with all that it involves, and willing to do it; or you should, for the sake of the patient, stand aside and let the job be done by someone who is both willing and able. And part of that is getting all the knowledge and skills you need.
Postscript: It’s important to remember that:
A. Everyone should have a doctor with whom they can talk; the time to establish this relationship is years before a serious situation arises. Also, a doctor whose judgment you can trust, and someone you are comfortable with.
B. I stress that if you are responsible for someone you must take the time – under guidance if necessary – to get all pertinent information and skills.
Next week, my response to Dr. G.