I have watched many people die.
Mostly, of course, these people have been elderly. Often they are no longer able to recognize family members. They are essentially bedridden and have multi-system organ failure. As their worn-out bodies fail, they typically stop eating and drinking. This is followed by slow dehydration, kidney failure and the onset of coma. Two or three days later they breathe their last breath. It's a very peaceful and painless way to go.
Forty or 50 years ago, this was the nearly universal way to die -- at home, surrounded by loved ones keeping vigil over the deathbed and saying their last goodbyes. Such a peaceful death is essentially no longer permitted. The emphasis is toward the maximum care that medical science can offer.
In contemporary American society, we must start IVs to rehydrate our dying citizens, and if they stop eating, we insert a tube through an incision in the abdominal wall into their stomach to provide nutrition. We place them in an intensive care unit where there is no night and day, where the constant clanging of alarms prohibits restful sleep, and where needle sticks every couple of hours constitute a form of slow torture.
If they are unlucky, they have a tube placed through their mouths into their lungs and are placed on a mechanical ventilator to breathe for them. This, of course means that they can't talk, or even close their dry mouths. Often they are sedated, and their hands are tied to keep them from ripping out the tube. This arrangement ensures that they will whisper no final words of love or respect in the ear of a beloved.
After a week or 10 days at $10,000 a day, we then transfer them to a nursing home where we continue to feed and water them like a plant. They are surrounded by strangers as opposed to family -- but the care providers are nurturers, so diapers are changed on a regular basis. After a month or so, the patient develops pneumonia and is transferred back to the hospital, where the cycle is repeated. With a little luck -- and despite the best efforts of modern science -- within the next several months they will die and the torture will be over.
The cost of these several months of ignominy exceeds the entire net worth of many citizens at their retirement. It is in this fashion that we manage to spend more than 80 cents of every health care dollar on the last year of life and consume 14 percent of the gross domestic product.
At some time in the last few decades, America decided that death was an unnatural occurrence, and that all we had to do as our bodies failed was to uncover the right diagnosis and fix it. American culture has lost its ability to come to grips with the inevitability of death. And, as technology advances, our ability to prolong death -- as opposed to prolonging life -- will only increase.
So what is the solution to this issue, which embodies both enormous human suffering and enormous financial cost?
The solution will not come from the health care industry. There are too many incentives to maximize revenue, too much fear of litigation if anything less than maximum care is delivered, and a mortal fear of assuming responsibility for such profound philosophical questions.
Do we need stricter government oversight over how our health care dollars are spent? Panels that will decide where and to whom scarce dollars are allocated? The American public is rightfully fearful of allocating such enormous power over their personal lives to their government.
So the best solution is a paradigm shift in the way that Americans think about the process of dying, and a willingness by physicians to help gently lead families through this labyrinth of difficult and often painful decisions.
Physicians need to be more honest with patients and families when death is imminent and further medical intervention is ultimately futile. This is a far more difficult conversation to have than one offering hope, but we physicians need to do it.
We need to help the public understand that sometimes aggressive medical intervention turns the end of life into a final ritual of agony rather than a passing in peace. Patients and their families need reassurance from physicians that doing less is sometimes an ethically and morally superior choice that can minimize suffering.
Major tort reform could remove the fear of litigation that often discourages physicians from doing anything less than everything at the end of life. In the current environment, unfortunately, once you get on the medical care train it is hard to get off. Families often need to be very assertive with physicians when further intervention makes no sense for their loved one.
There also need to be resources that facilitate and encourage families to care for their dying loved ones at home. The hospice movement has been providing exactly such support for more than 50 years. Employees of companies with 50 or more workers should be reminded of the option, through the Family Medical Leave Act, to take a 12-week unpaid absence to care for a dying relative.
And finally, the solution lies within each of us. Each of us needs to realistically embrace our own mortality and provide our families with direction through frank discussion as to how we wish them to proceed upon our incapacitation. We can spare them the agony of difficult choices, provide them with comfort, and in many instances minimize our own suffering by executing advance directives or a "living will." We owe that to our families, just as surely as we owe them careful estate planning.
Cultural attitudes never change overnight. But if each of us takes personal responsibility to have these profound conversations within ourselves as well as with our loved ones, we could minimize suffering and make the end of life a more peaceful time, when families quietly coalesce to bid farewell. Then the financial issues would take care of themselves.