Gunning Grandma Down: How the conservative narrative distorts the facts on healthcare reform
From Mudpuppy Sherry Wachter:
The word is out: The Obama Healthcare Plan will reduce premiums not by denying health insurance to those who need it most, but simply by applying most elegant, most final, most cost-effective solution. We’ve been informed by no less than the GOP leadership and Sarah Palin herself, former governor and now campaigner-for-hire, that Trig himself will be one of the first victims, should the plan be voted in. The thought of Trig Palin in the crosshairs is unpleasant to all of us, I’m sure, and if the asssertion had any basis in fact the horror and outrage would be fully justified. But it’s not. It’s just not.
How do I know this? Because I read the relevant section of the bill. You can read a summary, and an excellent discussion, on FactCheck.org. More important, I have been fortunate enough to actually have a little background in healthcare, in advance directives, and in the Compassion and Choices organization, which began in Oregon, was instrumental in passing the Death with Dignity law, and has become part of the national conversation. A recent study posted on the Death With Dignity National Center’s website should be required reading for everyone involved in the debate. The study finds that, in the eleven years since the bill passed, there has not been a single instance of abuse. Not one.
The fact is, this part of the legislation isn’t presenting anything new. All it requires is that people be informed of their legal medical options, and that they be offered the opportunity to speak for themselves, should the day arrive when they can no longer do so. Opponents of reform have positioned the legislation as some sort of coerced euthanasia program. Nothing could be farther from the truth.
Put simply, the bill requires that medical practitioners inform their patients of the tools available to them for maintaining control of their own healthcare decisions–even if the day arrives when the patient can no longer speak for himself, or herself. Living Wills, or Advance Directives, combined with a durable power of attorney, provide healthcare professionals a guidebook for administering certain types of life support measures if the patient is comatose or otherwise unable to voice his or her own wishes. This is not a “license to kill,” as some would have it, but a way of providing a legal, binding decision to family and healthcare providers. An advance directive may say, “I do not wish to be rescitated.” Or it may say, “Take every step necessary to prolong my life.” Or it may say, “I trust Mary Smith to make a reasoned, compassionate, choice for me if I cannot speak for myself.” What an advance directive does is allow the patient to speak–and to give the patient’s voice the force of law.
Advance directives are simple to fill out. Most people don’t even need an attorney to fill out the forms, though some of the forms require witness signatures (and these cannot be hospital employees) and in some cases notarization, and going over the forms with your attorney and/or estate planner is probably a good idea. It’s recommended that you notify those who care about you–and particularly the person you designate as your spokesperson, should you choose to do that–that you are filling out an advance directive and what your wishes are, but it’s not required. All that’s required is that you provide the completed form, correctly signed and notarized if necessary, to your healthcare provider at a time when you are legally competent to do so.
The new law would change none of that; it would simply require that your healthcare provider do what every doctor I have had in the last ten years has done, anyway, during my initial visit: ask me if I have an advance directive, if I need information about writing one, and offering to provide me with forms and information if I wish. In addition, the law would now require your doctor or healthcare provider to check in with you periodically and verify that your advance directive–if you choose to complete one–is current. There are all kinds of reasons for this. Perhaps the person you designate as your spokesperson dies, moves away, or becomes your mortal enemy. Perhaps you change healthcare providers. Perhaps medical technology changes, and new treatment alternatives become available, or old ones are discredited. In such circumstances, your wishes could and should change. So should your advance directive. It’s in your best interest–and in your healthcare provider’s best interest–to make sure that your wishes reflect the reality of your life, your relationships, and your treatment options at the time they take effect. Advance directives are a good idea. Hospitals, doctor’s offices, and clinics everywhere provide information on them–and the necessary forms–for free. As I said, this legislation isn’t really adding anything new; all it does is require that healthcare providers inform their patients of their options–and take steps to ensure that the patient’s wishes continue to reflect the changing realities of their lives.
The bill is about preserving choice, not removing it, and certainly not about pressuring sick people to off themselves. For one thing, such a step would violate the Hippocratic Oath. And for those less high-minded, such a step would be contrary to the healthcare providers’ best financial interests. Sick people go to the doctor. They require a lot of care. Doctors make money on them. If you’re in medicine for the money, advising your patients to kill themselves is not smart.
Most legislation has winners and losers, but for the life of me, I can’t see a downside to this. Healthcare providers are given clear instructions for patient care that bear the force of law, thus freeing them of the threat of a malpractice suit. Patients ensure that their treatment plan reflects their own wishes and values. Families aren’t faced with the agony of trying to divine “what Mama would want us to do.” Mama has spoken. There are no losers.
And yet the bill is being spun as a coerced euthanasia bill. Opponents trumpet that government operatives will attempt to pressure the elderly and sick into suicide “for the good of the state.” and to cut Medicare costs. This attack is not only false, but it threatens to undo several states’ death with dignity laws. If you are unfamiliar with the laws, I recommend checking out the Compassion and Choices and Death With Dignity Act information widely available online. For a humanized look at how legalizing end of life choices has played out in lives, check out Compassion in Dying, Stories of Dignity and Choice, available from NewSage Press and by contacting Compassion and Choices–Oregon.
The book contains an excellent discussion of Oregon’s Death with Dignity Act, the safeguards built into it, and case histories of several people who used the law in various ways. I urge you to read the law for yourself, but here’s a quick summary to get you started. Like an advance directive, the law is based on the premise that each person is entitled to control the decisions made about their healthcare, and that such control should never be usurped by another person or agency.
But here is the crucial difference: Advance directives offer people the opportunity to express their wishes while they are in a position to do so–and to have those wishes given the force of law even if the day arrives when they can no longer make their own healthcare choices known. The Death with Dignity act requires that the person most intimately concerned be mentally competent and physically able to administer the medication to themselves. It cannot be implemented by a third party.
The popular conception is that the Compassion and Choices organization and the Death with Dignity laws are all about allowing people to kill themselves–or allowing others to kill them–under the cloak of law. In reality, Compassion and Choices is about far more than just providing the terminally ill with the power to choose when their life no longer has meaning to them, and what, if anything, they’d like to do about it. It is about exactly what the name says–about compassion, and about giving choices to those for whom choice is rapidly slipping away.
Compassion and Choices provides the terminally ill and their families with options and resources, from a volunteer base of respite caregivers in some areas to transportation to doctor’s appointments to help in contacting appropriate resources for help in one of life’s most difficult passages to help in discussing illness and death with family. Providing the terminally ill and suffering with a means of ending what has become a meaningless existence to them is only one small part of the package, but it is the part that has gotten the most press coverage.
And rightly so. Deciding at what point one’s life is no longer worth living should not be done lightly, and never, I believe, by a third party. Oregon’s law includes many safeguards to ensure that the law is not abused. Among other things, the law requires that the patient be diagnosed terminal within six months, that they undergo counseling, that they be certified by two psychiatrists, and that they be able to administer the medication themselves.
In short, in states where it is legal and in circumstances where it is relevant, part of the physician-patient discussion mandated by the proposed healthcare laws might include such topics as hospice, palliative care, and maybe even the options that the Death with Dignity Act provides.
But all of that’s academic, isn’t it? Sarah Palin isn’t the only one putting the faces of her nearest and dearest on the proposed law. The fact that her spin, her theorized “death panel,” is not a distortion so much as an outright fabrication doesn’t mean that she’s the only one considering what the law might mean to all of us. I’m doing it myself. And I’m hoping and praying the law passes not because of some wild-eyed speculation, but because of my father.
Ten years ago Dad was diagnosed with terminal pancreatic cancer. From the day the doctors cut him open, took a biopsy for form’s sake, sewed him up, and sent him home to die they were scrupulous in offering no hope. The cancer was advanced, and in an inoperable location. Furthermore, it was pancreatic cancer, which at the time was virtually always a death sentence–generally within 6 to 18 months, authorities said. Reading about a disease I had never even heard of before Dad’s diagnosis was terrifying. The general consensus was that pancreatic cancer is a filthy way to die–it strips its victims right down to their souls, and then takes that, too. There is intense pain. There is nausea. There is the loss of bodily functions. If anything, the authorities understated the facts.
I watched my father wither from nearly 6′5″ and 275 pounds to an emaciated skeleton. I watched him choose between pain and nausea and the merciful oblivion the morphine offered. In the beginning, he chose pain. He had things he wanted to accomplish. He worked a last summer running my parents’ custom harvesting business, having someone drive him out to the fields, the oxygen tank on the floor beside his feet, holding onto the pickup as he crept over to give repair instructions to those of us who had had to become his hands, trying to get around the corn chopper so the rest of us didn’t have to see the blood and bile he was vomiting in those days, then at last going home, to the relief of morphine.
Because of Oregon’s death with dignity law, my parents were able to map out a care plan for Dad that focused on prolonging quality of life, rather than waging a futile war against a foe that had already won. There were a few rounds of radiation therapy to slow the cancer and keep him as comfortable as possible, but no chemo therapy, which would have been both painful and futile. Because of the hospice resources available my parents had access to the hospital beds, in-home nursing care, hospital equipment, and medications Dad needed to keep his quality of life as long as possible. Because of the law Dad was able to die in his home, in a bed looking out over the river valley he loved, rather than buried in a maze of tubes and machines in a hospital ward.
Had he chosen to do so, Dad could have chosen at any time to halt the morphine, be certified competent, and (up until the cancer made it impossible for him to swallow) obtain the means of ending his own suffering. I take great comfort in that. To the end of his life, Dad was alive because he chose to be, because he felt he had unfinished business, because there were conversations he still needed to have. He wasn’t alive because some organization that didn’t know the pain of his private circumstances had decreed that he must be forced to live and fight beyond the point where hope and strength had been exhausted.
Sarah Palin and the opponents of the bill would have us believe that the law denies the precious value of human life, that bureaucrats will look at a spreadsheet and decree that some hapless person is no longer a good healthcare investment, that the bill deprives us all of the right to choose our own way of living–and dying.
On the contrary, the law helps ensure that our right to live–and cease to live, if our lives have become unbearable to us and there is no hope of respite–will remain firmly in our own hands until we choose reasonably, thoughtfully, and lovingly, to lay it down.
The next time you see the screaming mobs destroying the opportunity for meaningful discussion at a Town Hall meeting about healthcare reform, think of my father, turn off the television, and call your healthcare provider, call Compassion and Choices, call your lawyer, call your parents, call your children. Research the legal cases surrounding the Death with Dignity act. And then think of my father again, and put yourself in that hospital bed overlooking the river, watched every second because even in this extremity a part of your brain is driving you to work, vomiting blood and bile, a rubber sheet on your bed, needing help to get to the bathroom, onto the toilet, needing to have your bottom wiped, in the end suffering the agonies of a childhood rape again because you can no longer swallow the morphine, the “patches” are no longer enough, even though they are plastered on your body like bandaids, and anal suppositories are your only hope. Imagine a world in which ice cream has become bitter to you, in which you can only eat soups and purees, in which you cannot swallow, in which you cannot hold a cup.
Imagine living like this if you have chosen to do so, as my father did. Now imagine living like this if you have not chosen to do so, and if you have no hope of respite. Think of my father. Think of yourself. Think of your children.
Medicine has come a long way in our lifetimes. It offers hope in many cases where there was none. It offers options for treatment that were unthinkable just a few short decades ago. But those very advances have forced us to look at ourselves as more than bodies. Michael Crichton has one of his characters in Jurassic Park comment that science is increasingly answering “yes,” to the question, “Can we do this?” And that in the wonder of that, we are forgetting to ask the greater question: “Should we do this?”
Advance directives, laws like the Death with Dignity Act, and the healthcare reform legislation under consideration do not pre-empt a person’s right to choose how their medical care proceeds. Having doctors advise patients of the wisdom of determining what kind of medical care they will receive and when before they can no longer voice their wishes is a good and compassionate thing to do. Explaining the resources available to terminally ill patients who face agony and then death–from care aids to hospice to the power to determine at what point enough is enough is, in my opinion, also a wise, compassionate, and respectful thing to do. Explaining options allows each person to move beyond, “Can we do this?” in their own unique circumstances, and provide a clear, thoughtful answer to the bigger question every family and healthcare provider of a terminally ill patient struggles with: “Should we do this?”
