Anyone who has gotten seriously involved with care giving for a loved one knows how deeply involved one has to get in the medical world; hospitals, doctors and medical treatments.
I have learned over the years how important it is to not be passive in any way, to independently investigate and not assume that the doctor always knows best. There are so many decisions that have to be made almost on a daily basis. These decisions of course vary in importance. The small decisions like whether to give a sleeping pill or not, don’t have dire consequences and one learns over time if it is a good option. Then there are more important decisions, decisions that can have significant consequences one way or another.
I’m at one of those junctures now. I soon have to decide whether to give a particular treatment for my mother’s very advanced osteoporosis. She could get an injection for it but the side effects are pretty bad. If she doesn’t get it, she could break her hip bone, be forever incapacitated and have to be in a nursing home. It’s a challenging area because I’m not an expert in any way. Many factors have to be taken into account. As a caregiver and living most of the time with my mother, I know her better than any doctor. I know how sensitive she is to medication; how easily she can slip into hallucinations and have adverse reactions. I have learned from experience. Because doctors unfortunately don’t have the time to sit down for long periods of time and really get to know their patients and because drugs are often the preferred method of treatment, this added input from the caregiver is so essential. Every treatment also has its possible side effects and so I have to weigh those possible effects against what could be gained.
All these questions bear down upon me now. It’s not clear cut. I can’t ignore the expertise of the medical world; on the contrary, I often want to hear more opinions from that world, to keep probing, assesing, digesting… looking at the whole picture. For awhile I have to be willing to “hang out” with no resolution, lean in, gather as much information from all different sources and still not know.
What guides us at these moments of intense decision making? We all have certain values that come to the forefront. Life at any cost is not necessarily the hignest value because a life lived in pain and suffering after one has lived a full life is not really desirable. But if a course of action could improve one’s quality of life or prevent unnecessary suffering, this is very desirable.
Partly what guides me in making decisions in general is my mom’s attitude which has always been to go for the possibility of change. She is in that sense “pro-life.” When she was 93 years old and knew she had a constricted aortic valve that was going to lead to heart failure and death, she chose to try at that time a fairly new procedure, not yet accepted by the FDA. We flew down to Columbia with her Miami Columbian doctor and she had an aortic valve replacement through a catheter in her leg. That took guts, but she said to me at the time, “Do I have any other choice?” Preceding this trip, I had done extensive research; learned the pros and cons; the risk factors and then presented the information to my mom and let her make the decision. She chose for life or the possibility of life knowing that she could die if it wasn’t successful. That is an example of my mother’s unspoken philosophy; she has always chosen for life, change and possibility. I think of the Jewish toast, “L’Chaim” which means “To life.” That has always been my mother’s guiding principle.
Any decision like this is a risk, but a well calculated risk. In the end no one is a complete expert in this field of life and we can never totally know the outcome beforehand. We can do the best we can; listen, question, and reflect until we reach resolution. And then it’s out of our hands.