A superb essay about medicine and the Hmong people of farawy

Quite valuable is this article in The New Atlantis - a journal of technology and society.  -- Albert Gedraitis



The New Atlantis (Feb11,2k13)

Doctors within borders

by Caitrin Nicol

In 1982, a tiny baby girl was brought to a Merced, California emergency room with a murky complaint. Her parents spoke no English and no hospital staff spoke their language, Hmong. Not much seemed to be wrong with her except congestion, for which the resident on duty prescribed antibiotics and told the parents to bring her back in ten days for a follow-up appointment. They didn’t, as they had no idea they had been asked to do so; but in nineteen days, they were back in the ER with a similarly urgent but unknown concern, and the whole scenario played out again.

On their third such visit, the problem crystallized — the child arrived still in the throes of a grand mal seizure. The doctors sprang into action, as doctors do, to control the seizing (which they did), determine the cause (which they didn’t), and provide her family with anticonvulsants to prevent it from happening again (which they tried).

It happened again, dozens of times. With every new seizure there was an increased risk of progressive damage to the brain, as the critical flow of oxygen was impeded.

After a few months of treatment and multiple adjustments to the prescription, the doctors realized to their dismay that the patient was not responding to the medication because she was not taking it. How could this be? Her parents were clearly devoted to her, but perhaps they did not understand. A fleet of nurses, social workers, and other liaisons was dispatched to the family home to draw up charts and schedules, stick little suns and moons on pill bottles to indicate the time to be administered, mark liquid dispensers with the proper dosage, divvy out the medication day by day, tape samples to a calendar to show what had to happen when, and explain a hundred times the utmost importance all this had to restoring their daughter’s health.

Though a translator had not been present at the family’s first few encounters with American medicine, by this point there was usually a cousin or older sibling or interpreter provided by the county, which ostensibly was to allow for all parties to make themselves perfectly clear, and, presumably, arrive on the same page as to the care of the patient, whose best interests everybody had at heart. But it turned out that the lack of a translator was the least of their problems. For reasons of their own, which health care providers vaguely sensed related somehow to “spirits,” the parents balked at many therapies no matter how carefully, repeatedly, or urgently they were explained, preferring to sacrifice a cow or rub coins on the baby’s body than to give her Western medicines with their disturbing side effects.   

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Death with Dignity: Trying to plan for the end of your life with facility and dignity

Bravo to New York Times for this editorial stance in favour of options which make Death with Dignity in a place and at a time I choose, more possible.  And another bravo to Gundersen Lutheran Health System in Wisconsin where "among the lowest-cost hospitals in the nation in treating patients at the end of life."

— Albert Gedraitis


NYT (Nov25,2k12)

EDITORIAL

Care at the End of Life

Published: November 24, 2012 159 Comments

Three years ago, at the height of the debate over health care reform, there was an uproar over a voluntary provision that encouraged doctors to discuss with Medicare patients the kinds of treatments they would want as they neared the end of life. That thoughtful provision was left out of the final bill after right-wing commentators and Republican politicians denounced it falsely as a step toward euthanasia and “death panels.”

Fortunately, advance planning for end-of-life decisions has been going on for years and is continuing to spread despite the demagogy on the issue in 2009. There is good evidence that, done properly, it can greatly increase the likelihood that patients will get the care they really want. And, as a secondary benefit, their choices may help reduce the cost of health care as well.

Many people sign living wills that specify the care they want as death nears and powers of attorney that authorize relatives or trusted surrogates to make decisions if they become incapacitated. Those standard devices have been greatly improved in recent years by adding medical orders signed by a doctor — known as Physician Orders for Life Sustaining Treatment, or POLST — to ensure that a patient’s wishes are followed, and not misplaced or too vague for family members to be sure what a comatose patient would want.

Fifteen states, including New York, have already enacted laws or regulations to authorize use of these forms. Similar efforts are under development in another 28 states. The laws generally allow medical institutions to decide whether to offer the forms and always allow patients and families to decide voluntarily whether to use them.

With these physician orders, the doctor, or in some states a nurse practitioner or physician assistant, leads conversations with patients, family members and surrogates to determine whether a patient with advanced illness wants aggressive life-sustaining treatment, a limited intervention or simply palliative or hospice care.

The health care professional then signs a single-page medical order telling emergency medical personnel and other health care providers what to do if the patient is incapacitated. In most states, the patient or surrogate must also sign the medical order to indicate informed consent. The orders are conspicuously highlighted in a patient’s electronic medical record and follow patients from one setting to another — such as a hospital emergency room or nursing home — so that any health professional handling the case will know what interventions the patient might want.

This comprehensive approach to end-of-life decisions started in Oregon in the early 1990s and is now used voluntarily by virtually all hospices and skilled nursing homes in that state. At least 50,000 Oregonians with advanced illness are covered by orders signed by a nurse or doctor. The program has provided care consistent with a patient’s wishes to limit treatment more than 90 percent of the time and has significantly reduced unwanted — and costly — hospitalizations, presumably reducing the overall cost of care.

The Oregon model has been adopted by the Gundersen Lutheran Health System in Wisconsin, where the forms now cover virtually all patients in facilities for long-term care or hospice care. Families are pleased and costs have come down. The Dartmouth Atlas of Health Care, which compares Medicare costs among various regions of the country, found that, in 2010, Gundersen was among the lowest-cost hospitals in the nation in treating patients at the end of life.

The Wisconsin Medical Society moved to organize voluntary pilot projects with doctors using Gundersen’s approach in other areas of the state. But the society backed down from using the physicians’ order forms because of opposition from the state’s Roman Catholic bishops, who contended that the orders might raise the risk of euthanasia. As a result, the pilot projects will only encourage healthy adults to do advance planning and create powers of attorney well before they face a medical crisis.

No matter what the death-panel fearmongers say, end-of-life conversations and medical orders detailing what care to provide increase the confidence of patients that they will get the care they really want. In some cases, that could well mean the request to be spared costly tests, procedures and heroic measures that provide no real medical benefit

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