In my thirties, I developed a theory that every person has one really bad thing happen to them in their life and once you learned the lesson you had to learn from that one really bad thing, it would be smooth sailing from then on out. In my fifties, I discovered I wasn’t really very bright in my thirties.
We were now spending 15-hour days at the very same hospital that my brother had been in and out of for the last 5 months but now with our mother. She woke confused and unable to speak as we all waited for the medical professionals to pull out their tealeaves and read mom’s future. We became hopeful as in the course of three days; she regained 98% of her cognitive abilities and full speech. The only real downside was she was weak and we figured rehab could build back up her strength.
The family was still shaken from Ed’s medical trauma and now we were thrown into another life and death situation. In the past, our family had relied on absurdist humor to handle difficult situations but shock and fatigue were setting. Nothing was funny or fun.
My mother had in place a living will; she had been quite clear in her directive that when the time came, she be allowed to die without unnecessary medical interference. She did not want to exist on life support half way between this world and the next. I had talked with other families who found themselves in the awful position of having to “pull the plug”. Everyone said, that it was not one big decision that got him or her to that point, but a series of small, seemingly innocuous choices. As each specialist came to us asking for one more test, we worked to understand the unintended consequences of our acceding to their desires.
What we found was that each specialist was in the business of solving the problem in his or her area of expertise. The Neurologist’s response was to prescribe a powerful blood thinner to avoid more clots and when met with the objection that mom was a fall risk stated that she would just have to be confined to a wheel chair for the rest of her life. This would be a major lifestyle change and he could not understand our hesitation at agreeing immediately. He seemed to take our questioning as a comment on his medical judgment.
In response to all the pressure that came with each new decision, we came up with a vision statement. I know that sounds funny given that vision statements are normally reserved for major corporations trying to manage a large workforce but it was an organic response to the situation. Our vision statement was Safe and Comfortable. Using this concept as our touch point, we measured each medical request against this maximum. Fortunately, by the third day, Mom was ready to go to the next level of care.
The hospital caseworker approached us about two rehabilitation centers that mom’s insurance would cover, excitedly telling us that one was the “best” center in the area. We jumped at the chance to get her into the premier rehab center. Immediately my sister asked if we should visit the facility and I stated it was not necessary. My response was totally against type. I do my research on everything; the Internet was made for me and here I was agreeing to send mom to a facility sight unseen. My sister agreed without comment. Again, fatigue was shaping our actions and decisions.
I have since come to understand that as much as we don’t want to think about all the potential health problems that could befall us or those we love, it is important to do so when we are healthy and rested. I was learning at warp speed about Medicare, bridge insurance coverage and hospital procedures while navigating individual personality types. The experience with Ed and my mom has shown me that I need to be more proactive in my own healthcare beyond just having health insurance.
First, choose a doctor before you need them and have a conversation about philosophy and treatment. My family history is riddled with heart and stroke problems, so I need a cardiologist. You don’t want the first time you meet a doctor to be when you are lying on a gurney in the Emergency Room unable to speak. Also, learn where they have hospital privileges. You may select and vet the most competent doctor in the field you require but if they don’t have privileges at the hospital you are in, you will be starting all over with a new doctor who the hospital has chosen.
Second, choose your hospital. If you are fortunate enough to live in an area with multiple hospitals, do your homework and make a choice. Don’t rely on what your neighbor does, how close the hospital is to your home or what the ambulance driver suggests. Know why you would go to a particular hospital. Hospitals specialize and they have personalities. My father was a patient at Mayo in Jacksonville. Mayo has a team approach to treating patients with one doctor who acts as a family liaison. The Mayo doctors met daily to discuss my father’s treatment. For a family such as ours, this worked well because we could get all our questions answered and knew who to talk to about our dad. My mother chose another hospital whose model was of independent specialist who made his or her rounds as their schedule permitted. They communicated with each other though a chart that was kept outside my mother’s room. We found this a difficult and frustrating model. If we weren’t in mom’s room 18 hours a day, we would miss one of the multiple specialist treating mom and have to wait another 24 hours before getting our questions answered.
Third, select a rehabilitation center before you need one. Today, insurance companies are working to minimize costs so they push hospitals to move patients into a more cost effective situation as soon as a patient is “medically stable”. Rehab centers are an intermediate step when someone is really not ready to go home but doesn't need all the medical options a hospital offers. My brother needed to go to rehab but the closest facility that his insurance carrier would cover was one hour away from his home and doctors. (Even though there were some logistical challenges with the location of the rehab center, Ed received excellent care.) We learned that the real driver behind selecting a rehab center is insurance coverage. Obviously, the better your insurance, the more choices you will have.
Fourth, understand your insurance coverage. Yes, I too, groan at that statement. To really understand your coverage, it is necessary to read the policy and then talk to the insurance company. Don’t bother talking to the guy who sold you the policy. Call your insurance carrier directly and explain you are trying to educate yourself before an emergency and ask to speak to someone in pre-authorization. Those folks really do have all the answers.
It is not easy for a family member to be sick or hurt but the emotional pain is complicated by the necessity of making decisions in real time in unfamiliar territory. Making informed decision about doctors and hospitals before you need them can result in better medical care and reduce the stress on family.
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