Sometime back, when I was a trainee, we used to get patients at the end of their life. They would come to us tired and dejected (and angry) after treatment from premier hospitals all over the country; having tried various form of alternative therapies and charlatans. And we would evaluate them and send them back to their homes. Some saw the futility and accepted while some fought to be admitted and die in the ICU. Overall there was (is) singular lack of knowledge and guidelines for the patients, their relatives and also among the physicians and health care workers.
I looked around and found there were no institute or place for such people and their families for guidance. The few places that existed were religion affiliated and their outlook was not what was needed. After so many years; even today no such places exist.
In recent time this area of end of life issues and hospice care has seen advancement especially in United States. A great series of articles was published in the Dallas News which I would recommend to everybody. Excerpts
Nobody wants to die a slow, lingering death. But many Texans do. Half die in hospitals. One in five passes away in intensive care. Often, their last months of life are expensive, painful exercises in medical futility.
Health care reformers in Dallas and around the nation are pushing for a better way to help people at the edge of life.
Practitioners of “palliative care” combine traditional medicine with pain relief, spiritual counseling, and practical advice for patients and families.
These articles derive from the experiences of palliative care team at the Baylor University Medical Center in Texas.
Unlike hospice, palliative care can continue alongside aggressive, life-sustaining treatments. Palliative doctors, nurses and other clinicians guide patients and families through searingly painful choices, including decisions to avoid overly invasive care. They aim to help patients live as well as possible for as long as possible, and to help grieving families prepare for the inevitable.
Research indicates that such “comfort care” sometimes can prolong life more effectively than aggressive surgical, chemical or radiation therapies. It also can reduce medical expenses; Medicare spends 28 percent of its annual budget on care given in the last year of life.
She describes the families and their emotions so well, highly recommended reading includes video clips.
Mr. Bourque tried telling Michelle that her mom might not make it. The little girl set stuffed animals and a purple-and-orange squirt gun on her mother’s emergency-room gurney like talismans.
The Bourques were medical people. Mr. Bourque, 44, was a pediatric ICU technician starting nursing school; Mrs. Bourque, 45, was a pediatric respiratory therapist. They couldn’t kid themselves, but it wasn’t clear how much their daughter understood.
They’d tried to spare her, and sensed that Michelle was trying to protect them, too. They all needed help to get through what was coming. But nothing else could happen as long as Mrs. Bourque was trapped in agonizing pain.
In this era when nothing is ever enough and the machines can breathe for you; pump your heart; feed you forever; but cannot think for you: read here the series by Lee Hancock.