dKos has members who have expert knowledge in an astounding array of fields. A brief sampling reveals posters dedicated to law, history, science, and even a few with a working knowledge of politics. I want to provide a medical voice. Not THE medical voice, (doctors are a diverse bunch), just one medical voice. In my first medical diary I went into the details of the
standard American death, and went light on the politics. Since this is in fact a political blog, let's kick this series into a more site-appropriate gear.
Death, like everything else in America the Polarized, has become politicized. The intentional causing of death through euthanasia has been a hot-button issue for ages, flaring up again every few years (and in the process of flaring up again). The simple withdrawal of care from the neurologically devastated has traditionally been far less controversial, at least since the days of Karen Ann Quinlan in the mid 70's. It doesn't happen nearly enough (see my previous medical diary), but there has been broad public consensus that it should be allowed, if not outright encouraged.
Until recently.
A prominent example: In the late 1980's, Tom DeLay's father was horribly injured by a machine at his workplace. I don't know the extent of his injuries, but as multiple organs began to fail, further care was withheld and he was allowed to die, with the agreement of the entire family. (Tom "tort reform" DeLay and his family later sued the manufacturer of the machine, including for pain and suffering. This is an example of the well-documented "It's OK if you're a Republican" phenomenon.)
In 2004, Tom DeLay led the charge against Terri Shiavo's wishes, resorting to the GOP's time-tested method of debate and calmly explaining to the country that her husband was guilty of "medical terrorism" for wanting to end her life in accordance with her wishes.
This isn't just a result of Tom DeLay becoming a prominent politician during the interval. An underlying assumption about the signficance of quality of life has been wiped away and replaced with blind adherence to ideology by a good many people, and Tom followed suit. What changed?
Doctors have mostly moved in the right direction on this issue, especially younger doctors. It seems over the course of the 80's and 90's there was a radical shift in the medical profession's attitudes away from raw quantity of life to a more quality-based approach (it's admittedly got a long way to go). I don't know what drove this, but it's striking how few current residents believe care should be extended in these cases (not that we have any control) and I've never met one who would want aggressive care for themselves. Whereas in the past doctors would actively treat, even against family wishes, in my experience overtreatment is usually driven by family wishes, which doctors have virtually no power to override. Many more people are allowed to die peacefully now than in the past. The politics of personal vegetation are not being driven from our side.
The Fundamentalist agenda changed. Like Stem-cell research, end-of-life decisions have become a proxy in the abortion war. This may sound like a stretch, but bear with me. If one were to admit that the termination of a neurologically devastated person's biological life is ethical, or even desirable, then it becomes very difficult to label the termination of a fetus without a functioning nervous system as unethical. Did they really care about Terri Shiavo? Or any vegetative person? It really has nothing to do with their agenda, but by pursuing an absolutist stance they are shoring up their definition of life for the big debate. Fundamentalist Christians think they have a compelling frame in "life is precious from the moment of conception up until the moment of death." End-of-life issues are only obliquely related to abortion, which itself is an issue only as a consequence of their desire for feminine submission. They don't care about fetuses any more than they care about vegetative patients.
The Far Right has tried to make this into another one of their stepping stones towards taking reproductive control away from women.
This was years in the making- the fundie networks have had this on the backburner long before any of us were aware of it. Before Shiavo became a national issue, I had a patient who was vegetative. Her daughter was very sweet, very rational, a pleasure to deal with. I tried to tell her what would be in store if the feeding tube were put in and she was discharged to a nursing home. She understood, but said "I want to talk to a Family Values hotline I've heard about before making any decisions." She talked to them. Sure enough, the feeding tube went in, and I imagine that both she and her mother lived the nightmare scenario I described in my last diary.
A hotline?! I know not what guilt-tripping trash they feed people about subverting God's will and/or murdering your relatives, but it was enough to induce this poor woman to condemn herself to an exhausting caretaker role and her mom to a long dying process. The thought makes me tremble with rage.
Shiavo popped up as a national issue, and the very same Tom DeLay said "God has brought [Terri Shiavo] to us... to help elevate the visibility of what is going on in America," referring to "attacks against the conservative movement, against me and against many others." (The grandiose paranoia is even more amusing now that he's indicted.)
Tommy boy was following the political winds. The Religious Right was waiting for this to happen, they were falling all over themselves to get it to go national. DeLay knows what side his bread is buttered on, just like George "I only interrupt my vacations for Fundies" Bush and every other Repug who jumped on the brainless bandwagon to feed their hate-filled base. They jumped right off again when the polls came out. But the fundies didn't change their agenda. They never do. It was there before Shiavo, but Shiavo elevated it to national consciousness.
Now keeping yourself and your relatives alive as long as medically possible has become de rigeur, a piece of the overall godly/cruel Fundie agenda as basic as opposing abortions and hating gays. As a consequence, even the process of dying will be split along political boundaries. Whereas liberals, moderates, and secular conservatives will increasingly dictate the terms of their (medically limited) deaths in advance, the fundies will push docs harder in the direction of pointless expense and suffering for their relatives, consuming health care dollars and spreading superinfections. I don't see many fundies in NYC, but they come along from time to time. In the comments section of my previous diary, Servetus, a hospice doctor in Texas, anticipated the content of this diary when he mentioned what he has seen of this phenomenon. It's an unfortunate development that is driven by pure ideological need for a hard and fast definition with which to fight a battle for public opinion. It is an end point that has rationally developed from a malicious and baseless starting point.
Death is a difficult subject and even non-looney bin contemporary culture has a perverted approach- ignore the possibility until it happens, and once it does, immerse yourself in the circumstances of the death, rather than the life of the dead. The proliferation of roadside crosses, official memorials that induce people to relive disasters over and over again, laws named for dead children. We remember the day Lincoln was born and the day Kennedy was shot dead. Over the long term, American society's attitude towards death has changed, and I would argue it is not healthier and it is not for the better. How this has happened would be an interesting topic for debate in the comments section. In any case, a realistic, honest, progressive reappraisal is required.
Overall there's cause for hope. I was overwhelmed by the supportive, grateful, and gracious responses to my previous diary, which dealt with a painful and graphic subject. The general public showed its disgust with the Fundie agenda during the publicized period of the Shiavos' tragedy. Families are far better educated about these issues than they were before she became a national issue. The medical culture is still moving more towards encouraging withdrawal of care and less aggressive medical measures. Simple incentives such as cost-cutting and the desire to reduce society's infectious disease burden will help to guide the system in the right direction. Fundies and their ilk will torture their relatives, but in this case they cannot even hope to impose their will on those of us who are prepared. Get informed, plan ahead, take control. This is your death we're talking about, you only get one chance to do it right.