My mother’s hands are cupped together, one hand gnarled and twisted tight by arthritis. She can’t walk the walk or talk the talk anymore. She is in her wheelchair or in bed now and is mostly mute. Her eyes often just stare distantly, looking down the road of her life and the journey to come.
A few days ago, a physician’s assistant at the nursing home Mom lives in called to ask about putting her under hospice care. It’s a good thing, he said, for someone with end-stage Alzheimer’s. This way, he said, Medicare will come in on top of what we are doing here and pay for some things — oxygen tubing, incontinence pads, an aide to help with her showers three days a week, and so on. Comforting things like that. Small things.
The truth is that Mom is toodling along like the Energizer bunny in general physical health and is not yet in the neighborhood of what most people imagine hospice care to be.
But what this brought to mind is the brouhaha surrounding the “end-of-life” counseling provisions embedded way on down in the language of several of the current healthcare reform bills. The truth will lie somewhere in the mundane middle between Sarah Palin’s “death panels” and President Obama’s remark that we “aren’t going to pull the plug on Grandma.”
What’s been left out of this equation is human nature. Some many months or years down the line, perhaps long after Obama is out of office, some lonely Medicare minion or insurance adjuster will take the leaky words of a rather vague policy and turn it into a standard operating procedure. Why? Because that’s the way he was brought up maybe, or he just sees the world in rigid terms of enforcement and paperwork or corporate profits.
All it will take then is a shrug of the shoulders, a raised eyebrow of suggestion directed to an old person of diminished capacity, or to a confused family huddled in conference, or to a venal relative chomping at the bit. Look, he will say, these drugs are really costing the government or my company a lot of money every month. We’re going to have to cut down expenses, the president said so back then, and there’s an easier way for everybody. Or maybe it’ll be a doctor influenced and under the sway of the drug companies, or a health care worker bribed by someone deep in the bowels of an insurance company. It’s only human nature.
We have a model for this already in the state of Oregon. There a medical insurer offered to pay $50 for a death cocktail for a dying woman rather than shell out $4000 for her “expensive” cancer treatment. My mother’s case is not so drastic yet. But it doesn’t take much of a mental leap to see how these little “comforts” suggested by the physician’s assistant can quickly turn on a dime into expenses that need to be scaled down.
Mom is far from needing hospice care, at least in the minds of my brother, my sisters, and me. We see hospice care as coming in during the last few days of life as vital signs go down, breathing becomes labored, nutrition by mouth is only a lost memory, and a few pain-easing medications might be warranted. And then the last breath comes and Mom goes home to God. Perhaps like my Dad, who sat up in bed right out of a comatose state, she will also sit up with her eyes open and a beatific smile on her face. Then she will fall back down peacefully on her pillow and into eternal life.
Mom is ready, she is fortified with all she really needs. As an only child and out of nowhere, she convinced her Baptist mother to let her go to a Catholic school. She converted on her own to Catholicism when she was twelve years old. She convinced my Dad to convert so they could get married before a Catholic priest. Toward the end of his life, he became fervently faithful. She read her Bible every night for decades until the words no longer made connected sense. But she was by then filled with the Word. She loved going to Communion until she finally forgot how to swallow the Bread, as she has forgotten how to eat earthly food. Before her mind dissolved into randomness, she made her Confession and received the Last Rites. We are grateful for all the grace-filled moments we have experienced in caring for her over the last eight years.
My hope is that her last moments will not be tainted or hastened along by a government bureaucrat or some insurance wonk looking to save some money, or some doctor trying hard to help pay off medical school loans by using Federal or corporate financial incentives for end-of-life care.
My mother, if she could know all this, would applaud our view of caring for her. But Mom’s life is in God’s hands now. It doesn’t need to be, at the end, in the hands of some stranger with unknown or questionable motives.