Tag: ALS

Abortion/courts/Death and Dying/End-of-Life/General interest/Health/Reproductive rights/Women
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Faces of hope for women’s rights

by Fran Johns

The universe may, after all, be unfolding as it should (apologies to Max Ehrmann’s Desiderata.)

This could be encouraging.

Within the past several days I’ve been to a number of events concerning our rapidly disappearing reproductive rights; I’ve discussed end-of-life options with a friend newly diagnosed with ALS; and — this one puts things into a new perspective — listened to the remarkable nuclear arms experts Eric Schlosser (Command and Control: Nuclear Weapons, the Damascus Accident and the Illusion of Safety) and Joseph Cirincione (Nuclear Nightmares: Securing the World Before It Is Too Late) explain how easily we could obliterate one another.

StethoscopeMore on compassionate dying and nuclear weaponry later. I just finished talking with about 40 young medical students and healthcare professionals about reproductive rights. Many are students, and members of an excellent organization, Medical Students for Choice. They are committed to protecting women’s health, educating other healthcare providers and the general public about women’s health needs, and making sure that women everywhere have access to safe, legal abortion.

These young people can make believers of you. Belief, that is, that women’s rights will indeed be protected and that lack of access will not lead again to women dying from botched abortion. The articulate president of MSFC (who bought a copy of Perilous Times and said everyone should know these stories; no wonder I’d follow him anywhere) told me he was certain that each and every member of MSFC would continue to provide safe procedures even if abortion becomes illegal again; but he also said, “I don’t believe that will ever happen.”

I wish. But even though I am a hopeless optimist I’m not optimistic about Roe v Wade staying in place once it’s challenged at the Supreme Court level, which is likely to happen soon. Many of the young healthcare professionals were also upbeat with the belief that women don’t stand to be harmed as severely as pre-Roe “because medical abortion is so simple now, and misoprostol (the abortifacient pill) so readily available.” I wish again. Many, many women today are already facing harm because they take misoprostol without proper supervision, in improper dosages or too late. But these women are — as obvious in the statements of the young professionals at this seminar — essentially invisible. They are poor, disempowered and living in remote (even not so remote any more) areas where they have no access to safe abortions. They’re not dying in droves — one of the things that prompted passage of Roe v Wade — but they are often harming themselves… or having more unwanted babies.

I’m siding with the students. Their dedication and commitment are an inspiration and their hope for the future admirable. My hope is just that they are right… and the universe will continue unfolding, with justice, as it should.

California/General interest/Health/Lifestyle/Medicine/Politics & Causes/Religion/seniors/Women
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Patients fight hospitals (& not just Catholic hospitals) for proper care

by Fran Johns

“Suppose I wind up being taken to a hospital,” said the lady with the penetrating blue eyes and a lovely, long braid over her shoulder. “How can I keep them from doing all those things I don’t want — ventilators, feeding tubes…?”

The lady with the lush braid was among a small group of retirement community residents with whom I spoke yesterday about end of life choices. None of them fear death. All of them fear aggressive, unwanted treatment. A colleague and I had been invited to talk with them about documents (advance directives, POLST forms, etc) and legal measures that can help insure a compassionate end. But the distressing reality is that there are no guarantees.

This is where we are with health care: patients having to fight against doctors, hospitals, systems — and directives from Bishops — for the right to die in peace.

A recent Kaiser Health News article (KHN is a publication of the Henry J. Kaiser Family Foundation and unrelated to Kaiser Permanente) cited problems arising from directives to Catholic hospitals about a variety of issues. The directives, issued in November by the U.S. Conference of Catholic Bishops, changed the policy on feeding tubes, for example, from “presumption in favor of”  to an “obligation.”

“This obligation,” the bishops said, “extends to patients in chronic and presumably irreversible conditions,” such as persistent vegetative state, who might live for many years if given such care. A feeding tube is not required, however, if it wouldn’t prolong life, would be “excessively burdensome for the patient,” or would “cause significant physical discomfort.”The directive raises fresh questions about the ability of patients to have their end-of-life treatment wishes honored — and whether and how a health care provider should comply with lawful requests not consistent with the provider’s religious views. Hospitals and nursing homes do not have to comply with requests that are “contrary to Catholic moral teaching,” according to longstanding policy that, as in the case of the revised directive, applies to non-Catholic patients as well.

As the women in our group yesterday understand, you can wind up with unwanted treatment in all sorts of circumstances, not just when you’re dying.

Dr. Lachlan Forrow, a Harvard University medical ethicist and palliative care specialist, expressed strong concern about the new policy, stressing its potentially broad scope. “That gets to be a very, very large number of people,” said Forrow, who heads a panel developing recommendations for the state of Massachusetts on end-of-life care.

(A)ccording to Catholic officials and outside experts, the directive may well apply to a wider range of patients, those that it describes as having “chronic and presumably irreversible conditions,” though the organization representing Catholic health facilities downplays the impact. Experts say this affected group could include those with massive strokes, advanced Alzheimer’s disease, traumatic brain injury and Lou Gehrig’s Disease.

If a patient or family didn’t want a feeding tube “and the reason they don’t want it is they basically want to die, then the Catholic institution would explain to them they can’t cooperate with that and they would have to go to another institution,” said the Rev. Thomas G. Weinandy, executive director for doctrine at the bishops’ conference, who helped draft the policy.

Weinandy said “obviously the public should know what the directives say,” and patients and relatives “can easily download the directives or get a copy.”

Oh, sure. The EMT people are loading mom into the ambulance, and you ask them to wait until you download a few pages of papal edicts.

In the days before she died two weeks ago (in a non-Catholic hospital) my sister Jane occasionally showed signs that, though sleeping, she might be experiencing pain. My niece, who was keeping round-the-clock watch over her mother, more than once asked the attending physician for additional pain medication and was told, in a “There, there now, dear” voice that “We can’t hasten!!” My niece is a tenured law school professor.

Doctors make a lot of fuss about that “First, do no harm” business in the Hippocratic oath. Is withholding pain medication because it might cause death a few hours sooner than later doing no harm? Is inflicting painful, unwanted and unwarranted interventions for some obscure religious reason doing no harm?

Catholic Directive May Thwart End-Of-Life Wishes – Kaiser Health News.

California/Health/Lifestyle/Medicine/Politics & Causes
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Is marijuana a medicine?

by Fran Johns

Of course it is, to answer this rhetorical question posed by a January 18 headline in the Wall Street Journal. New Jersey is the most recent to recognize that fact, becoming the 14th state to legalize use of marijuana for medicinal purposes. The New Jersey law, signed this week by outgoing Governor Jon Corzine, limits use to patients with specific illnesses such as cancer, HIV/AIDS, multiple sclerosis and ALS (Lou Gehrig’s disease) and specifically forbids grow-it-yourself projects.

What’s needed now are serious studies of how good a medicine it really is, and these aren’t happening very fast. As outlined in a New York Times article this week, getting permission to study the weed is no easy task.

Despite the Obama administration’s tacit support of more liberal state medical marijuana laws, the federal government still discourages research into the medicinal uses of smoked marijuana. That may be one reason that — even though some patients swear by it — there is no good scientific evidence that legalizing marijuana’s use provides any benefits over current therapies.

Lyle E. Craker, a professor of plant sciences at the University of Massachusetts, has been trying to get permission from federal authorities for nearly nine years to grow a supply of the plant that he could study and provide to researchers for clinical trials.

But the Drug Enforcement Administration — more concerned about abuse than potential benefits — has refused, even after the agency’s own administrative law judge ruled in 2007 that Dr. Craker’s application should be approved, and even after Attorney General Eric H. Holder Jr. in March ended the Bush administration’s policy of raiding dispensers of medical marijuana that comply with state laws.

“All I want to be able to do is grow it so that it can be tested,” Dr. Craker said in comments echoed by other researchers.

Marijuana is the only major drug for which the federal government controls the only legal research supply and for which the government requires a special scientific review.

“The more it becomes clear to people that the federal government is blocking these studies, the more people are willing to defect by using politics instead of science to legalize medicinal uses at the state level,” said Rick Doblin, executive director of a nonprofit group dedicated to researching psychedelics for medical uses.

In California, where a mish-mash of laws and enforcement policies can bewilder all but the expert — (and there are many experts) — the Supreme Court ruled yesterday that lawmakers acted improperly in amending the voter-approved legalization of medicinal marijuana to limit the amount critically ill patients might have:

The high court ruled lawmakers improperly “amended” the voter-approved law that decriminalized possession of marijuana for “seriously ill Californians” with a doctor’s prescription by limiting patients to eight ounces (227 grams) of dried marijuana and six mature or 12 immature plants.

The Compassionate Use Act, passed by California voters in 1996, set no limits on how much marijuana patients could possess or grow, stating only that it be for personal use.

In 1997, the state’s Supreme Court defined a lawful amount as enough to be “reasonably related to the patient’s current medical needs.”

The state’s quantity limits were passed in 2003 as part of a voluntary identification card program designed to protect against both drug trafficking and wrongful arrest by allowing police to quickly verify a patient’s prescription.

The court on Thursday let stand the voluntary card program but found that the limits it imposes should not “burden” a person’s ability to argue under the Compassionate Use Act that the marijuana possessed or grown was for personal use.

California Attorney General Jerry Brown said in a statement the decision “confirms our position that the state’s possession limits are legal” as applied to medical marijuana cardholders.

While conceding that marijuana may have some just-for-fun attraction too, I can’t vouch for the recreational weed. Thankfully, since I am addicted to anything that comes down the pike and question the view that marijuana is non-addictive,  it hadn’t made its way to small-town Virginia when I was experimenting with other mood-altering substances. But I do know its medicinal value. My beloved now-deceased sister could have had much suffering relieved with legal pot. Countless friends I loved and worked with during the height of the AIDS pandemic would have suffered less with legal, easily-accessible marijuana.

We are past time to establish, through definitive studies, the medicinal benefits of this natural bounty, and make it legally available to those in desperate need.

General interest/Health/Politics & Causes
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Looking at one's own end-of-life issues

by Fran Johns

A tough story eloquently told by California physician Martin Welsh adds poignancy to the fight for legalized physician aid in dying, and emphasis to the need for patient choice as a consideration in health reform. Dr. Welsh speaks in clear language of his current dilemma:

I am a 55-year-old retired family doctor with a large, loving family and innumerable friends and former patients whom I see often. I am an extraordinarily lucky man.

For the last five years, I have also been a patient. I have ALS (or Lou Gehrig’s disease), a cruel neurological illness in which a normally functioning intellect becomes trapped in an increasingly weak and eventually paralyzed body. Soon, I will die from it.

Through my career, I tried to honor my patients’ end-of-life wishes. But after a quarter-century as a firsthand witness to death, I’ve developed my own perspective.

It’s not that I’m a quitter. I have struggled against adversity of one sort or another all my life, and those challenges have helped prepare me for what I face now. I still delight in accomplishing difficult things, and I always wear a bright red ALS wristband that says “Never Give Up.”

That said, there will come a limit. I have made it very clear to my wife, my family and my doctors that I want no therapy that will prolong my suffering and lengthen the burden on others. I do not want a feeding tube nor a tracheotomy when the time comes that I can no longer eat, drink or breathe for myself.

Dr. Welsh suggests, for himself and others, making a list of 100 things that make life worth living, ordinary things one does every day.

Some are routine, some are “chores,” some are pleasurable. Get out of bed and walk to the bathroom. Kiss your wife. Answer the phone.

Drive your car to work. Go play golf with your friends. Brush your teeth. Write a letter, lick and seal the envelope closed and put a stamp on it. Hug your child.

Of course we do many more than 100 things each day, but for now, just imagine 100 that are essential to the life you live. Now if you take away one, you can still do 99. Is life worth living without being able to smell the rose in the garden? Of course it is! How about losing two or seven, or 23 — is life still worth living? Of course.

But suppose you get to where you’ve lost, say, 90 things, and now with each thing taken away, a bad thing is added…

At some point, no matter who you are or how strong, you can lose enough things that matter — and acquire enough negatives — that the burdens will outweigh the joys of being alive…

Recognizing he’ll reach that point one day, Dr. Welsh looks his destiny squarely in the eye:

…as I face my diminishing list of the 100 things that make life worth living, the choice of quality over quantity has to be mine to make.