This Wasn't Part of the Plan

Getting the Best Care - September 30, 2013

Recently a friend contacted me for advice related to finding in-home medical care for her aging parents. I was able to connect her with some resources for professionals who specialize in providing clinical care for the elderly. My friend was understandably upset when she realized that her parents could no longer care for themselves on their own. Part of her frustration was due to the fact that the changes were sudden and drastic and, specifically, she was not expecting a sharp decline in her mother's condition. Everyone expected that her father, who is much older, would have a decline in health first. This was a reasonable expectation based on statistics and probability and yet it isn't what happened in this particular case. So what do you do when health issues don't go as planned?

First you have to set your expectations to focus on a plan based on the most likely course and then be prepared for things not to go as expected. This of course is much easier said than done. When my husband was first diagnosed with cancer the doctors laid out a plan for his course of treatment. We set up our lives and planned everything expecting it to go according to that plan. I accepted a new job offer and we planned a vacation and family visits based on the plan that was established for his treatment. If I had known then what I know now, I would have asked the doctors more questions about how this plan might change along the way. What I did not realize in the beginning is that doctors often set a plan for care with the best case scenario in mind. This is of course a good thing; doctors know that focusing on a positive outcome can improve the likelihood of it coming true. They don't want to scare patients into thinking about how things could go wrong. However, what can sometimes happen is patient's expectations are set too high; they are then not prepared when things don't go according to plan.

When you are meeting with a physician, particularly for an informational appointment it is important to ask as much as possible. Often doctors only tell you what is necessary to their plan and recommendation. I found it helpful to ask the doctor what could go wrong or to review some of the most common things that could come up that might change the plan of action. You can and should focus on the positive and assume it will all go according to plan, but also ask the hard questions about the possible setbacks and worst case scenarios.

For example, when my husband and I met with his surgeon to discuss his scheduled operation to remove his tumor the surgeon laid out the plan for the operation. She did not mention that the surgery would be aborted if something was discovered during the pre-operation phase immediately after his anesthesia took effect. So when my husband's surgery was stopped after just a few minutes before it actually started I was completely unprepared. We had set up everything in our lives on the assumption that his surgery would happen and had support systems in place to help him through recovery. We had no contingency plan for how our lives would function if the surgery didn't happen. Had I known this was a likely possibility I might not have chosen to start a new job just two weeks before his surgery. I do not think the surgeon was negligent in preparing us for his surgery, she told us what we needed to know and we received complete and proper legal disclosure prior to the operation. However, if we had known to ask a few more questions about how things might change in the plan we could have been better prepared for it. In my personal experience being as informed as possible is the best way to be prepared and adjust well to the changes that come up during treatment.

To a certain degree it is helpful to think of the treatment plan your doctors recommend as a fluid outline rather than a definite course of action. Remember that medical professionals do not have a crystal ball to tell you your future. They can simply make a guess based on statistical probability. Most of the time you can count on things going as the doctors predict, but there are always outliers to every statistic, each case is unique. Keeping that in the back of your mind and being prepared for those changes will make adjusting to them much easier.