Death, politics and denial

Somewhere near the middle of the 1,018-page health care reform bill is a provision that would entitle seniors to Medicare coverage for an end-of-life consultation every five years – or more often if their health condition changes.

This relatively obscure and minor portion of the bill has ignited a firestorm of debate about government intrusion and the slippery slope toward euthanasia. In the past couple of weeks the public discussion has practically exploded over this one issue.

Here’s Catholic Online:

Will this National “Health Care” Plan encourage our elderly to take their own lives rather than somehow become a “drain” on the rest of us? Will it withhold medical care from them based upon a bureaucrat’s decision regarding so called “quality of life” issues? Will it encourage the rationing of medical services? Will it counsel the withdrawal of nutrition and hydration in order to expedite their death? In short, is Euthanasia included in this National “Health Care” Reform? The more I have looked at the proposals, the more it seems not only possible but probable.

Chain e-mails are making the rounds, warning that seniors will be browbeaten into suicide for the sake of saving Medicare dollars. Watchblog calls it a mandate that “would make George Washington throw up in his grave.”

But here’s the thing: None of it is true.

FactCheck.org did the research and concluded that “the claim that the House health care bill pushes suicide is nonsense.” Snopes.com, one of the leading debunkers of urban myths, came to the same conclusion. AARP leaders were so concerned about the disinformation that’s being spread that they felt compelled to issue a news release, calling for an end to the scare tactics.

What’s apparently going on is a whole lot of political maneuvering. I’ll leave it to others to explain in more detail and move on to the real issue here: Since when have we as a society become so averse to death that we can’t even discuss it without having it turn into a moral showdown?

Most of us, if we really thought about it, would like to have at least some control over how we die. Most of us don’t want a death that’s prolonged or agonizing. We’d like to be able to die at home, if possible, surrounded by family and loved ones.

But there seems to be a huge barrier to actually talking about it. Although laws recognizing the validity of health care directives have been on the books for almost 20 years, the majority of Americans don’t have a health care directive. According to this source, fewer than 30 percent of us have completed a health care directive or living will. Conversations about when to bring in the hospice team are still difficult to have, and all too often these conversations don’t take place soon enough.

Dr. Drew Rosielle, who co-blogs at the Pallimed hospice and palliative care blog, ponders what the current political tempest is telling us about our collective beliefs about death and dying:

… these people make these claims in part because they believe they will have traction with some of the public and should give us pause as a community to acknowledge that this speaks to some portion of the public, and thus our patients. And as better end-of-life care and palliative care are being put out there as potential solutions (in part) to the U.S. health care crisis, this is likely to escalate. Anytime it’s pointed out that “palliative care” (or discussing end-of-life options) saves money, that is going to be sufficient for some to conclude that this is a government conspiracy to euthanize people with disabilities and deny Grandma dialysis because she’s 80.

We need to talk about it anyway, Rosielle says, urging hospice and palliative care providers to “Be Out, Be Proud, Superb End-of-Life Care for All, No Apologies!” He writes:

What we do helps people, tremendously, and it’s what most want (when it’s time), and the fact that it probably saves Medicare a few bucks should be seen as good news by everyone.

Good news too if the political debate causes a few more Americans to stop and examine why we are often so intent on denying the death that inevitably comes to all of us.

Waiting too long to call hospice

Over the years I’ve spoken to many people who’ve had a family member spend his or her last days in hospice care. Unanimously, they’ve found it one of the best decisions they could have made. Many of them, however, said they wished they had done it sooner.

Why do people wait to call hospice? Author Paula Span tackles this issue in a guest post on the New Old Age blog for the New York Times.

"Sometimes, simple misconceptions are to blame," she writes.

People may think of hospice as a place rather than a service that aims to let people die in their homes. (A few hospices also operate residences.) Or they think hospice is for cancer patients, though in fact the majority of those in hospice have other terminal illnesses.

And sometimes families have a hard time letting go, Span says.

So even if your physician will sign the form saying that in her best judgment, death is likely to occur within six months if the disease follows its normal course — and that’s all that’s needed to enroll in hospice — often it’s the children who can’t bear to acknowledge that a father probably won’t rebound this time, that a mother is dying.

So families wait. And the parent dies anyway — maybe in pain that could have been eased, maybe with fears that could have been assuaged or lessened had hospice workers been able to offer more than brief crisis management.

 The discussion thread adds a dimension of personal experience and views on hospice care. Not all of it is positive. One person called it "a nightmare from start to finish." Others complained about excessive paperwork and insensitive staff. "All in all, we had no sense our hospice helpers were angels. They muddled through the experience, as we did," one commenter said.

Overall, however, most of the comments were favorable, such as this one:

Our hospice experience was most positive and provided my wife with a pain free, peaceful death. I knew nothing of hospice care before her illness. I am so thankful they were recommended to us.

For yet another perspective, here’s a guest column by oncology nurse Theresa Brown that appeared recently in the Well blog at the New York Times.

The patient, a woman in her 40s, was suffering, Brown writes, but although she had agreed to not be resuscitated if her heart stopped, she and her family wanted her to continue receiving antibiotics and blood products.

What should be done in a case like this? Brown called the doctor "and expressed my deep misgivings with the plan of care." After a conversation with the doctor and family, a decision was made to send the patient home with hospice care.

The ensuing comment thread contains an interesting ethical debate on who should make these kinds of end-of-life decisions. An intensive care nurse writes:

Would I want someone else to determine whether my life was worth saving? I believe that only you can know when it is time, and how much you wish to suffer. The lady in the article obviously knew and was already in pain before she was admitted. Yet, she wanted to live a few days more. You can grouse about the cost of treatment, but I do not believe you can begrudge her her sacred decision to live, despite her suffering. Perhaps at some point she would have given up, but maybe not. But, would you not want that choice?

Brown’s essay sparked almost 300 comments, and the thread is worth the time it takes to read it. The lesson here, if there is one, is that people tend to face death in their own way and their choices need to be respected, even if they happen to conflict with our own beliefs and values.