Life: a sexually transmitted, fatal condition

sunset

Life is a sexually transmitted condition that is invariably fatal.

That well-phrased truth – often attributed to British author Neil Gaiman – led off a talk not long ago at San Francisco’s Commonwealth Club by Atul Gawande, physician and author of, most recently, Being Mortal. Gawande’s message was all about being mortal, and facing that inevitable death in advance. In other words, if we mortals could please just admit our mortality – and talk about what we’d like our final days/weeks/months to look like – much good would result.

This writer has been on that soapbox for several decades.

Gawande and his interviewer, University of California San Francisco professor Alice Chen MD, spoke of the need for shared decision-making, shifting away from the paternalistic ‘doctor knows best: here’s what we’re going to do for you’ attitude to the physician giving information and involving the patient in making choices. But their decision-making would still put the doctor first and patient second. This writer respectfully disagrees.

Atul Gawande
Atul Gawande

In response to a question from the audience, Gawande agreed that “a patient with unbearable suffering should be given the option to hasten death.” But he followed this perfectly rational statement with an irrational comment: “every hastened death is a failure of the medical system.”

Give us a break.

The medical system needs, at some point, to confront this reality: Life… is invariably fatal. The medical system cannot forestall anyone’s death forever. The medical system cannot protect, absolutely, against unbearable suffering. Compassionate physicians across the U.S. are recognizing this fact, and increasingly backing the legalization of aid in dying for the mentally competent terminally ill.

Gawande, Chen and countless others are proponents of palliative care, an excellent, relatively new segment of care in this country. They would have us believe that palliative care is the be-all and end-all of end-of-life care, and they oppose the option of legal aid in dying. Palliative care, an option many choose, is a fine addition to healthcare. It can keep pain to a minimum and often insure comfort; as a last resort, palliative sedation can render the patient essentially unconscious for whatever hours or days remain until death comes.

But it is a cruel myth that palliative care, or even the best hospice care, can guarantee anyone will slip peacefully from good life to gentle death. Pain, indignity, discomfort and distress are part of the process; some of us don’t want much of that.

Legal aid in dying, the option to choose at what point to let invariable fatality happen, is the only guarantee. It’s an option that we should all have.

Danger Zone in End-of-Life Talk

carved ice dove

A suicide pill for everyone over 85? Not the wisest plan to suggest right now. But it is, in fact, a possibility put forth by Joyce Appleby, Professor Emerita of History at the University of California, Los Angeles.

In a letter published in the New York Times on November 13, Appleby notes a recent anti-longevity article by Ezekiel Emmanuel and a new book on end-of-life care by Atul Gawande (both physicians,) and says,

“Perhaps the moment is right for broaching the idea of what we might call prophylactic suicide: the decision of an elderly person to pre-empt the grim reaper and avoid the disabilities of extended life.”

Appleby goes on to note that organizations such as Compassion & Choices, with which this writer has worked closely for well over a decade, “are campaigning for dignified terminations of life for those with incurable diseases” but writes, “What I propose goes a step further, extending the right to people before they face terminal or debilitating illnesses.”

Not surprisingly, Appleby’s letter – one of The Times’ regular “Invitations to Dialog” – drew more than 300 responses. Nine were selected to appear either in print or online; this writer’s is among those online and is as follows:

“I strongly support the right of a terminally ill, mentally competent adult to choose aid-in-dying, now legal in five states, but Ms. Appleby does a disservice to the cause by suggesting “a step further” — prophylactic suicide. The latter bears no relation to the former.

“We would be far better served to fight unwanted medical treatment, so often futile and excruciatingly painful at the end of life, and to enforce individual advance directives. My own directives (I’m 81) stipulate that no medication other than pain relief be given should I become unable to speak for myself, and stress that I do not wish to be fed if unable to feed myself. More important, all of my children and close friends understand these wishes because we’ve had the conversation.

“Let’s work toward those sane measures, and leave “suicide” out of it.”

Because the Death With Dignity movement is so important, and informed dialog about it so critical, it is both tragic and dangerous to have misinformation and misperception spread. There’s been enough of both over the decade+ in which the movement has slowly gained strength. To set the record straight:

Death With Dignity – the right of a terminally ill, mentally competent adult to ask a physician for aid in dying – is now legal in five states (Appleby left out New Mexico) and the movement is fast gaining ground in half a dozen others. This is partly because people increasingly understand that Death With Dignity is not suicide – and is certainly no kin to “euthanasia,” as Emmanuel would have us believe. Under Death With Dignity laws, death comes because of a disease. Every death certificate for those who have considered or used DWD laws lists the cause of death as the disease; it is not caused by suicide. Euthanasia would never be allowed under DWD laws.

But the movement is also gaining strength because it has been carefully thought out and tested. Because it is rational and safe. DWD laws are designed to promote individual autonomy, and incorporate safeguards against abuse.

Much of the opposition (as evidenced in several of the letters in The Times) comes from misunderstandings which are advanced by Emmanuel’s and others’ misuse of the word “suicide” and by fears that the elderly will be encouraged to get out of the way as Appleby’s notion suggests. Both writers muddy the waters and undermine an important cause.

Death With Dignity is a safety zone. Irresponsible words throw it into a danger zone.

 

Quality health care at lower cost? It could happen

It seems a no-brainer: reward the doctors and hospitals that give the best care, latch on to programs and ideas that offer quality over quantity. But innovation in health care, even when it proves out, has always taken a very long time to work into the system.

In a ‘Talk of the Town’ piece appearing in the latest New Yorker magazine, writer Atul Gawande offers a thoughtful look at some of the hurdles ahead for the newly-passed health bill. They are primarily political: conservatives — even if they’re talking less and less about repeal — will run on pieces they plan to strip out, states will fight the insurance exchanges (such as those that make health coverage near universal in Senator Scott Brown‘s Massachusetts.) And other battle lines will be drawn.

But one primary problem with the dysfunction we are hoping to fix, Gawande points out, is that the current system “pays for quantity of care rather than the value of it.” He illustrates this with a case that makes you cheer, and then feel a little hopeless:

Recently, clinicians at Children’s Hospital Boston adopted a more systematic approach for managing inner-city children who suffer severe asthma attacks, by introducing a bundle of preventive measures. Insurance would cover just one: prescribing an inhaler. The hospital agreed to pay for the rest, which included nurses who would visit parents after discharge and make sure that they had their child’s medicine, knew how to administer it, and had a follow-up appointment with a pediatrician; home inspections for mold and pests; and vacuum cleaners for families without one (which is cheaper than medication). After a year, the hospital readmission rate for these patients dropped by more than eighty per cent, and costs plunged. But an empty hospital bed is a revenue loss, and asthma is Children’s Hospital’s leading source of admissions. Under the current system, this sensible program could threaten to bankrupt it. So far, neither the government nor the insurance companies have figured out a solution.

There is in the new bill, though, a ray of hope:

The most interesting, under-discussed, and potentially revolutionary aspect of the law is that it doesn’t pretend to have the answers. Instead, through a new Center for Medicare and Medicaid Innovation, it offers to free communities and local health systems from existing payment rules, and let them experiment with ways to deliver better care at lower costs. In large part, it entrusts the task of devising cost-saving health-care innovation to communities like Boise and Boston and Buffalo, rather than to the drug and device companies and the public and private insurers that have failed to do so. This is the way costs will come down—or not.

Imagine innovation being rewarded, communities being encouraged to find ways to improve quality of care at lower cost. That’s real reform, and it could just happen.

The next attacks on health-care reform : The New Yorker.