July 22, 2011
While the Brooks article in the New York Times (http://livewellthy.org/2011/07/20/i-dont-want-to-be-right.aspx) did not provoke much of a response from the public nor from the media, it has provoked quite a storm in the medical world. There are three central questions being discussed and one well accepted premise.
The well accepted premise is that keeping seriously ill patients alive is very expensive. In my recent article about Mr. Brooks, I related the story of a patient of mine who survived a catastrophic illness. The bill for his care ran in excess of $300,000 and was relatively small as he fully recovered. Had he only partially recovered, medical expenses might well have quadrupled. Mr. Brooks is right; the price of extending life is a financial burden on our government. Everyone realizes that fact. Where many take issue is the inference that, to balance the budget, Americans must more readily accept death.
That leaves us with the three central questions:
- When is it time to call it quits/let go?
- Who should be responsible for that decision?
- Who should be responsible for the bill?
End of life discussions between family members are essential and rarely occur. Everyone knows that they are born to die; they just don’t expect to get seriously ill and die today. End of life discussions between physicians and their patients are equally as important, yet rarely occur. Why?
Patients have lots of excuses. “I’m waiting for the right time.” There’s never enough time.” “That’s morbid. I want whatever the church says is right.” “My wife/husband will make the decision when it’s time.” All of these excuses are poor, putting off until tomorrow what should be discussed today. Not only should end of life issues be discussed today, but they should be revisited from time to time.
Doctors don’t have end of life discussions with their patients for a multitude of causes. The number one cause is because no one is willing to pay for the conversation. The President and Congress were going to include end of life consultations in the Annual Wellness Visit. Being politicians, they tested the waters and decided it was too hot a topic; so they dropped it. So much for doing what is right; let’s do what is popular.
Doctors also don’t have the time to sit with patients and their families and hash out the intricacies of end of life issues. There is a shortage of docs and it is getting worse. Who wants to go to medical school, incur hundreds of thousands of dollars in debt and then be reimbursed by Medicare at an ever decreasing rate? Only the most dedicated public servants and there are less of them around. Docs are swamped with ill patients; the ones who Mr. Brooks says are breaking the budget.
Who should be the one to decide when is it time to call it quits and let go? Dr. Segal believes it should be up to the patient (if he has his faculties) in consultation with his doctors and family. The fact that I listed doctors before family is significant! It is not uncommon for a seriously ill patient to tell me that he wants to be left to die but that his wife/daughter/son cannot handle his passing. Caring dearly for his family, he endures treatments he does not want that cause him further pain and suffering, struggling for a little more time. Again, Mr. Brooks scores a point here.
It is the doctor’s duty to put the interest of his patient before the interest of his family and help the family let their loved one pass in peace. In the case where the patient can no longer talk for himself, the decision to call it quits should then be left to the family, in consultation with the patient’s physician. Herein lies the biggest hurdle.
Families often hold out for miracles. I have witnessed miracles, such as my “brain dead” patient who is now living a completely normal life. Unfortunately, miracles are few and far apart! In the case of my most recent miracle, the decision was easy. My patient was young and healthy prior to his catastrophic event. The decision is less clear in a chronically ill elder whose quality of life was not great prior to an event.
Often family, particularly out-of-towners, have false impressions about their loved one’s quality of life and survivability. They often carry some guilt as well (“I should have come home sooner.” I should have called more often.”) Much of the time, they want everything possible done to keep Dad alive.
My father was chronically ill. For years, his quality of life was poor. He lived in Virginia; I live in Chicago. In my mind, he was the same, vibrant man that raised me. As long as I didn’t go home, I did not have to face the devastation of his illness. Living at a distance clouds one’s judgment. Out-of-towners have no daily reality check and, therefore, are often prone to maintain their loved one’s life at any expense.
So, there are no easy answers to questions one and two, but according to Dr. Segal, there is a wrong answer! The government! The government cannot make end of life decisions. It cannot be allowed to create committees and protocols that govern end of life decisions. Where Mr. Brooks is definitively wrong is in suggesting that patients need to relinquish life one day sooner based on society’s need to balance the budget. That opens the wrong doors!
It appears that the question we really need to answer is, “Who should be responsible for the bill?” Indeed, answering question number three is critical. Society has paid a price for the “abuses” of its members. Health is not cherished, nurtured, and guarded by the masses. Health is spent haphazardly on foods laddened with fat, cigarettes, alcohol, drugs, donorcycles, and all sorts of shenanigans. “After all, the insurance company or Medicare will pay to fix it, won’t they?”
As long as Americans have no skin in the game, no personal responsibility for their health, they will waste it. It’s time to pay to play! In March, I published (http://livewellthy.org/2011/03/09/5343660.aspx) an article about a patient who saved $53,000 dollars in 10 years by not smoking. That pays for a lot of healthcare. If we doubled the cost of smoking by charging one dollar of tax for every dollar spent on smoking, the government would have a lucrative new stream of revenue; and smokers would be shouldering the cost of their habit. If we did the same for alcohol, then every drink consumed would go to paying for the treatment of a future alcohol-induced liver disease. Don’t want to wear a helmet while driving the donorcycle? Pay a helmet-free license/tax and take a six week course in driving.
I don’t pretend to know all the answers. My intent is to stimulate conversation. We need a national conversation about end of life issues. Thank you, Mr. Brooks, for starting that conversation.