Patients and families have rights

I have been reading Head Cases by Michael Paul Mason. Mason’s book is a compilation and examination of cases of brain injury.

As I read a chapter about a young man by the name of Rob, I was struck by a conversation his mother had with staff.

Staff was puzzled as to why they could not get Rob to close his eyes all the way. Why did he sleep with his eyes half open?

His mother knew the answer. Rob had ALWAYS slept with his eyes half open.

I remembered when Brenna would not respond when staff ran a round metal object on the bottom of her foot. They wanted to see her twitch. No twitch. This gave all the more reason for a willfully uninformed doctor to rule her in a persistent vegetative state (PVS).  

Brenna was not ticklish. She would not have twitched her foot the day BEFORE her brain injury. She would not have twitched her foot an HOUR before her brain injury. She just wasn’t ticklish. She never had been. I never knew if she really wasn’t ticklish or had a strong sense of power over the control of that ticklish reaction others have.

Brenna had a strong will-power and perhaps in her injured state, the inner person that knew who she was and what was normal, again resisted the urge to twitch. She didn’t realize how important it was to play the game, the only one the doctor knew to play or cared to play.

NO ONE asked me what her normal reactions were before her injury. No one cared. They came in with their book-learned, pre-assumed ideas, and made their diagnosis. For all I knew, these doctors could have missed the day brain injury was discussed in class. For all I knew, they could have graduated at the bottom of their class.

I call their DX of PVS for Brenna as what it was…pure bunk! I believe they weren’t qualified to make that determination. One doctor, after she was dismissed from the first hospital, a doctor who had NEVER seen Brenna, wrote me a letter to send to her university, giving the DX of PVS. Had he for ONE moment stepped into her room at the nursing home from hell where he was on staff, he would have known that Brenna Deshawn Dowd was a living, breathing human being who KNEW exactly where she was and that the staff there didn’t care whether she lived or died. Her life made no difference to them. They could always get someone else to fill the bed.

I was her mother. Brenna was and still is my only beloved child, the child of my heart. I knew her better than I knew myself. Every doctor should have asked me what was normal for Brenna prior to her injury. THEN they might have been able to make an informed diagnosis. Doctors should make this assessment of all patients with family members and should pay heed to what they hear.

I believe that making a fully informed diagnosis is outside the realm of most doctors in modern medicine. The doctors get their MD. In their opinion I believe that stands for Medical Divinity. Too many approach the medical profession as if they are on the fast track to god-head. They make an off-the-wall DX of PVS because they do not know, care, or understand how to go about it.

A family member who is approached by one of these ghouls should have every right to see all the credentials of the doctors making the determination of PVS and brain death. Families should have the right to know just where this doctor stood in his or her medical class at graduation. Bottom of the class or in the top 10%? Attendance record? His or her own mental stability? What makes this person an expert? [My 8th grade science teacher, Mr. Schaeve, taught me that an expert was a "drip under pressure".][Others say an expert is someone 50 miles from home.] 

Families have a right to know and the medical profession should have a duty to disclose. We pass laws that require full disclosure on the sale of a home or a vehicle. We force a garage to stand behind its guarantee. Buy a house and find a problem that wasn’t disclosed and should have been? Trouble comes.

Yet, when it comes to the most critical decision of a lifetime, families are never given full disclosure to the physician’s qualifications to even care for the patient, much less encourage families to make the tragic decision to end life, based on a doctor’s possibly ill-informed decision over quality of life.

Brenna Deshawn Dowd did not die of her brain injury. She died, in my belief, as the result of a culmination of tragic medical events that led up to her sudden cardiac arrest (SCA), a list of events that include multiple hospital and institutional associated infections (MRSA, UTIs, C-Diff, bloodstream infection, infected gums from 5 broken teeth), improper diabetic protocol for a brittle diabetic, internal bleeding because doctors refused my request to take her off Coumadin, blood clots, potassium overload, total disregard for dental care that put infection from broken teeth into her blood stream, and a general neglect of proper daily care in all facilities prior to her SCA.

Brenna Deshawn Dowd deserved better than she got from the hands of doctors in the first 16 months of her brain injury. Only at the end, did she receive full benefit of a loving, caring staff who gave this mother confidence that they knew what they were doing. When I saw THEIR tears, my heart eased. They weren't pushing their agendas. They eased this mother's aching heart, knowing the decision that I had to make.

Brenna Deshawn Dowd, your mother has always been so proud of you. I love you forever, forever I do. Always and ever, your Mama loves you.