One of the things that concerns me in managing my elderly mother's care, is that I'm placed in a position of deciding matters of life and death, or, less dramatically, physical well-being. Over all, I'm a decisive person. I don't prevaricate and I enjoy making decisions and then moving on. But I'm not a doctor nor do I have any medical background. Thus, as her caregiver, I don't believe I have the proper training or information to make the best decision, or in some cases, perhaps even the right decision. What I do have is this1. a good gut instinct, 2. access to information and the ability to use it, 3. a wonderful, helpful and knowledgeable sister, 4. a fantastic care manager who's a nurse as well, 5. a firm handle on what I believe is the direction my mother's medical care should take.
I don't underestimate the value of any of the above ingredients to good decision-making. Nevertheless, the whole arena of making medical decisions for an elderly parent is charged with subjective issues. Face it, this is a parent we're talking about, which on its own makes decision-making tough. Add to that that medical and health issues in the geriatric arena often are emergencies, thus inherently not given to calm, thoughtful processing of information. As well, the momentum of medical care is such that one tends to be advised to "do whatever can be done" regardless of the long-term benefits. But, in the case of an elderly patient, how long is "long term" anyway? Or better still, how long is "long term" to you and your parents?
I listened to an interview of Dr. Robert Martensen on the public radio program Fresh Air the other day. If you want to listen to the interview, click here . Dr. Martensen, a bioethicist and ER doctor, had a lot to say about how inadequate doctors usually are in a) giving enough information to patients and their advocates b) knowing enough about the patient to make the information pertinent to their situation, and c) allowing enough time for patients and advocates to discuss the situation and options for care in a meaningful and substantive way.
Dr. Martensen's comments made me realize what's essential in the medical situations elder care givers face. What we have to do is modify the information the doctor gives, so that it's relevant to us and our situation, rather than being just generic medical information about a condition.
Think about it. The only way to make a good decision is if the information you have is specific to your needs, your ethics, your values, your desired outcomes. When you look at it this way, it's clear that you need to do some homework ahead of time, so you know what your desired outcomes are. For example, take the issue of health care directives. It's one thing to help your parent put an advance healthcare directive in place. It's another to work through for yourself whether you really will be able to instruct the withholding of a potentially life-saving drug or procedure when the time comes. Put another way, it's easy enough to fill in a form; it may not be so easy to implement the instructions of that form when faced with mortality.
I guess what's become a little clearer for me is that my ability to make the best call when the time comes, and my own peace of mind about it, will be based on the thinking and evaluation I do right now. It behooves all of us to spend time sorting through the issues on our own, before we're faced with having to make a crucial decision in real time.