By Kirk Stapp
If you are facing death, or a loved one is gravely ill, your whole world is shattered. You inevitably confront gut-wrenching decisions.
One day you don’t feel well, you visit your doctor and he tells you that you have three months to live. Or worse yet, you receive a phone call and are told that your wife has had a stroke. It’s critical.
She is in the hospital, unconscious, on life support systems, plastic tubes run from her nose and mouth, a panel of green TV screens rise up behind her bed. The room smells of disinfectant and sterile gauze. You hold your wife’s hand. Nurses and doctors come and go. In the middle of the night, the emergency ward doctor asks you to come to his office. He closes the door and explains your wife’s condition.
He can’t answer the one question that endlessly spins through your mind: “Will she be alright?”
He is kind; his voice is soft, full of concern. He reads from a list of questions. You learn a new acronym: DNR, “do not resuscitate.” He asks if you have ever talked with your wife about life-saving efforts. Does she have a living will? Do you have power of attorney? The questions don’t quite register. What’s he talking about? This can’t be happening.
You have spent the last two days and nights in the hospital. You smell of nervous, sour sweat. You drink another cup of coffee. You skin feels greasy, your clothes stiff and sticky. The nurse tell you to go home, take a shower and get some sleep. She promises to call if there is any change. You reluctantly go.
You sit on your living room couch, sipping wine from a water glass. No, there isn’t a living will or an advance care directive. You could have made time, but you were too busy. Besides, it only happens to other people. At the hospital, you signed medical release forms — you think they were release forms; you didn’t read them.
Your living room has grown dark; the couch is cool against your skin. You have kept it together, but now a dozen “whys?” are spinning in your brain. How could this happen? Your wife is young, she exercises, she eats the right foods. You are angry with God and yet offer up a silent prayer. You close your eyes and feel a wave rushing up from inside your chest, full of confusion and pain. The wave spills forth in a choking, agonizing sigh. You can’t catch your breath between convulsing gasps, and tears run freely down your cheeks.
Your wife is moved from the intensive care unit to a hospital room and then to a rehab hospital. She shares a room with another stroke victim. You introduce yourself to the woman in the next bed and her husband. The husband is angry, frustrated. He paces the hallways, preoccupied. His insurance will only cover two weeks of rehabilitation therapy.
During the second week of rehab therapy, your wife’s case manager invites you into her office. She explains that insurance companies limit rehab therapy to two weeks. She candidly admits health care is rationed by the bottom line; insurance companies’ profits. She schedules an exit date, orders durable medical equipment — a wheelchair, which is paid for by the insurance company. She explains that once home your insurance company will provide one day a week of in-home care for six weeks or three days a week of hour-long outpatient therapy sessions for eight weeks — your choice.
During your wife’s second week of rehab therapy, you watch other patients being wheeled out to waiting cars, lifted into the front seat or slid onto the back seat. There is a stunned, confused, stupefied expression on the faces of family members. For some patients it will be a slow, agonizing death sentence. There won’t be 24/7 home care, the family works — euthanasia through neglect.
Meanwhile, 18 months of home physical therapy pass. The progress is agonizingly slow.
August 2009: Sarah Palin dominates the news with her claims that Obama’s health care plan creates a “Death Panel” that would kill her elderly parents and her Down Syndrome baby. Palin predicates her fears on a provision in H.R. 3200, the House’s current draft healthcare bill, that calls for “advance care planning consultation.” If passed, the measure would make available to individuals the option benefit (reimbursable under Medicare) of a consultation with a medical provider, professionals to speak with, and offer an explanation of the legal definitions of a living will, a healthcare proxy, and durable power of attorney that allows individuals to make clear their wishes for end-of-life care. Your doctor could also provide a list of resources to assist you and your family with advance care planning, hospice care, what financial resources are available, and explain the meaning of different orders relative to life-sustaining treatment.
The bill would also block funding for counseling that presents assisted suicide as an option.
Today Americans can set aside their fear of Death Panels, rationing and euthanasia; a key group of senators (Democrats and Republicans) have abandoned the non-mandatory option benefit of “advance care planning consultation.” Thanks to right-wing media mouthpieces, such as Sarah Palin, Senator Chuck Grassley (R-Iowa) and Newt Gingrich, millions of Americans have been convinced that the option of advance care planning could be misused. The elderly and ailing could be coerced into accepting minimal end-of-life care to reduce America’s health care costs, which insurance companies are already doing to increase profits.
Fear of what might happen is the mind killer. The health care hysteria has devolved into shouting matches and ideological spin: Death Panels, rationing, euthanasian, “government takeover,” socialism, Nazism and so on. Ultimately, when all the shouting and spin subsides, one truth will persist: we all must face end-of-life decisions for ourselves and our loved ones, with or without the consultation of a healthcare provider.
Finally, the one sane suggestion that’s been ignored during the Death Panel brouhaha is that specific language be added to H.R. 3200, which would state that end-of-life consultations are NOT MANDATORY — either for physicans or patients — and that there would be NO PENALTY, either in coverage or compensation, for declining to participate.
Congratulations, Sarah. You won, America lost.
Kirk Stapp is a former Mayor and Mammoth Lakes Town Council member. He is also a teacher, and most recently the author of “Teaching Iraq.”