End-of-Life Choice, Palliative Care and Counseling

Healthcare Reform and the Price of Tortureby Barbara

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In this country we usually torture people before we allow them to die of whatever is killing them — cancer, emphysema, the multi-organ failure of diabetes or heart disease.

Like the episodes of military torture from which our nation is recovering, medical torture reflects a culture and a set of assumptions. Reform is not about just identifying a few “bad actors” and weeding them out. Our medical-industrial complex follows a cultural paradigm to do as many things to people near death as is medically possible. Our broken system rewards that paradigm with fee-for-service payments.

Standard routine is to torture those in the process of dying by inflicting upon them a host of toxic chemicals, invasive machinery and painful surgeries. It’s the American way of dying — agonized and prolonged imprisonment in an intensive care unit, pinned down under a maze of tubes and machines, enduring one medical procedure after another, unable to hold or be held by loved ones.

It’s an American tragedy, really. Every player in the medical-industrial complex is in on it.

Oncologists entice their dying patients into bearing one more, experimental round of chemotherapy almost certain to intensify toxic symptoms without extending life. Surgeons repair the fractures and amputate the limbs of people clearly only a few weeks from death. The newest medical specialists, “hospital intensivists” deftly thread tubes into failing hearts and attach ventilators to decrepit lungs. Much of the pain they inflict does nothing but monitor the chemistry and pressures of internal crevices and gather the information necessary to thwart a body trying to shut itself down.

Hospitals build bigger spaces and place ever more complicated technology at the fingertips of aggressive specialists. Behind the scenes pharmaceutical companies and medical equipment manufacturers produce the instruments, devices and chemicals of torture. And insurance companies pay by the procedure, feeding the bloated growth of an industry.

What is the price of all this? At Compassion & Choices we focus on the human costs. We expose how much end-of-life care merely prolongs a miserable dying process. We work to break the pattern of expectations and behaviors that rob people of dignity, peace and comfort at the end of life. We work for changes in law and policy to help those who reject futile heroics to die at home, with hospice care. We show how families can face loss and sadness together, close at the bedside of their dying loved one. We know the greatest price of end-of-life torture is the human cost.

But no one can ignore the fiscal cost of a system run amok. We cannot reform our healthcare system without addressing the fact that it is driven by profits. Medicare, as a public system, is the only source of comprehensive data on expenditures. Approximately 5% of Medicare beneficiaries die each year and in 2006 30% of the Medicare expenses were for their end-of-life care. 10% of all Medicare costs occur in the final 30 days of life. Most of the money goes toward intensive care and treatments intended to extend life, like feeding tubes and mechanical ventilators.

Here’s the irony. These exorbitantly expensive tortures do not even serve their goal. The authoritative study on this came out this March. Its conclusion:

Analysis demonstrated that higher medical costs in the final week of life were associated with more physical distress in the last week of life and with worse overall quality of death as reported by the caregiver. There was no survival difference associated with higher health care expenditures at the end of life.

How do we reform this profit-centered industry and remake it into a patient-centered one? How do we deliver the comfort care and supportive services people truly want and need at the end of life?

Like all cultural shifts, it must start with the people. The people — you — deserve to be able to choose a healthcare plan driven by what patients need, not what profit demands. You deserve a system that pays your doctor to talk with you about peaceful endings when death is imminent. One that pays for hospice care in the home as readily as it pays for intensive care in the hospital.

Raise your voice. Make your views known. Talk to your own doctor and to your family. Take action with calls to members of Congress and letters to local news outlets. Ask for healthcare reform to include payment for your doctor to talk to you about your end-of-life wishes. We make it easy for you here. Tell them you reject torture at the end of life for yourself and you resent the needless torture of others. Joining together, let’s change the American way of dying.