Regarding the Death of My Father

Have you had problems when you try to navigate the bureaucracy of our modern medical system?

Here is a powerful story of beautiful and sad things: love, loyalty, and loss. Lawrence Krubner recounts two episodes, first, the events surrounding his father's death from cancer, second, the time his mother nearly died of pneumonia. He concludes that his family would have been better off if they'd had a professional patient advocate with them. Even though every doctor and nurse is typically doing their very best to keep their patients healthy, the sheer complexity of the overall medical system sometimes gets in the way of the best outcomes.

The pain of losing a loved one never really fades. Even years later, many of us still long to have one more conversation with those we have lost. For Lawrence, the loss of his father was the loss of his best friend. Reconstructed from the messages Lawrence sent friends at the time, while he was trying to figure out the best options for his father, this is a story of events that every family must someday face: the love between a father and son, the good memories of certain childhood joys, and loyalty in the face of bitter odds. But mosty it is a story of loss. It is also a story of questions, of doubts, of wondering if things could have gone better.

Years later, Lawrence recounts the struggle to protect his mother when she developed pneumonia. Again, disagreements emerge among the medical staff and the family. When two doctors offer conflicting advice, whose advice should the family rely on? When one doctor suggests a plan of action that seems reckless and poorly thought out, how should the family resist?

After recounting these deeply personal stories, the book ends with an essay in which Krubner suggests a possible reform to the medical system: for better integration of all the many specialists who interact with a patient, a professional patient advocate would help a family understand what needs to be done, and could better advocate to get the right resources, at the right time, from the medical system. In the same way that a family going to court will hire a lawyer, it should be normal for a family, when dealing with the medical system, to have a patient advocate, someone neutral who knows the system and can guide them through it.

If you have faced a difficult situation in the American medical system, please share your story at:

We Need Patient Advocates

http: //www.weneedpatientadvocates.com/