Dying Well?

I discovered that former San Francisco Chronicle reporter Katy Butler is now publishing yet another book on dying well (her first book “Knocking on Heaven’s Door” was a best seller) when I read her lead essay in the February 8, 2019 Wall Street Journal article titled “Preparing for a Good End of Life”.

However, I recognized her name from reading her 2014 interview with Compassion and Choices , the well-funded former Hemlock Society that promotes physician-assisted suicide .

In that interview, she urged people to back the 2014 “Better Care. Lower Cost Act” sponsored by Senator Ron Wyden of Oregon “to improve appropriate medical support for people with chronic illness” and to “advocate to reduce payments to doctors who perform futile ‘Hail Mary’ surgeries, tests and treatments near the end of life”. Ms Butler also added that “we have an epidemic of unnecessary suffering at the end of life, and what’s more, it’s expensive!” (All emphasis added)

In that interview, Ms. Butler also talked about how her mother was “exhausted from nonstop caregiving” and how they fought doctors to have her father’s pacemaker turned off after he developed dementia, couldn’t walk to the neighborhood pool, became deaf and “too blind to read the New York Times-his last remaining pleasure”. Ms. Butler said she was glad to learn “from Judith Schwartz at Compassion and Choices that we each have a constitutional right to refuse any medical treatment or ask for its withdrawal.” (Compassion and Choices also promotes VSED, the voluntary stopping of eating and drinking, as well as terminal sedation as two legal options to hasten death in states without physician-assisted suicide laws.)

SCARE TACTICS?

In the Wall Street Journal article, Ms. Butler flatly states-without a source-that “Pain is a major barrier to a peaceful death, and nearly half of dying Americans suffer from uncontrolled pain.” (Emphasis added)

However, in an article “Pain Control at the End of Life” , June Dahl, PhD, a professor of pharmacology at the University of Wisconsin at Madison, and a founder of the American Alliance of Cancer Pain Initiatives states that:

“Thanks to recent advances in pain treatments, roughly 90 to 95 percent of all dying patients should be able to experience substantial relief from pain.”

Although Ms. Butler doesn’t mention physician-assisted suicide specifically, she does strongly advocate taking control of how we die, especially as we get older, because “Advanced medicine is replete with treatments (ventilator, dialysis, defibrillators, feeding tubes, to name a few) that postpone death and prolong misery without restoring health“. (Emphasis added)

She writes that “The best way to achieve a peaceful death is by planning ahead and enlisting the help of loved ones.”

In the Wall Street Journal article, she approvingly writes:

“When Liz Salmi’s mentor lay unconscious on a ventilator in a dark, windowless ICU room, attended by a cacophony of hisses and electronic bloops, she and other close friends lobbied for a better setup. All monitors but one were silenced, a doctor removed the breathing tube, and nurses and aides gurneyed her dying friend quickly into the ICU’s “best room”—a sunny spot, with windows opening to the outdoors.” (Emphasis added)

In this instance, note that the friends-apparently not the family or a “living will”- lobbied  the doctor to remove (not try to wean off) the ventilator. I am not surprised since I have personally heard some doctors say that, if in doubt, it might be legally safer not to treat rather than treat a patient because of the risk of a future lawsuit.

These kinds of articles and books are being used as “end-of-life education” for both the public and professionals. Can this be dangerous?

CAN WHAT YOU SAY POTENTIALLY BE USED AGAINST YOU?

My own mother often told me “I never want to be a burden on you children”. Then she developed Alzheimer’s and a terminal thyroid cancer. I was asked if the family wanted her fed if she got worse. “Of course, if she needs it”, I responded. My mother should die from her condition, not from starvation and dehydration. I  never told the doctors her comment about not wanting to be a burden because she wasn’t a burden. Mom died shortly after she went to a nursing home for safety reasons and we spoon-fed her at the end. She had no pain, thanks to a short course of radiation and chemo that she tolerated. My last memory of my mother was her smiling and enjoying the attention of her family before she died in her sleep.

In 1990, 2 years after my mother’s death, Nancy Cruzan died after 12 long days without a feeding tube, even after the US Supreme Court ruled that Missouri could require “clear and convincing evidence” that she would not want a feeding tube if she was in a “vegetative state.” At the time of the decision, there was no evidence of this.

However, Nancy’s parents later returned to a Missouri court with some of Nancy’s former co-workers who testified that they recalled her saying she would never want to live ‘like a vegetable’.

Three years later in a letter published in the Journal of the American Medical Association by Dr. Ezekiel Emanuel, one of the future architects of Obamacare, acknowledged that this “proof” of Nancy Cruzan’s alleged statement rested only on “fairly vague and insubstantial comments to other people”.

However and most disturbing, he also wrote that:

“…increasingly it will be our collective determination as to what lives are worth living that will decide how incompetent patients are treated. We need to begin to articulate and justify these collective determinations.” (Emphasis added.) Source: The American Journal of Medicine January 1993 Volume 94 p. 115

CONCLUSION

As a hospice and critical care nurse, I strove to make sure dying patients and their families had a good death, either in a hospital or other institution or at home.

Personally, my husband and I also made a careful durable power of attorney document that only designates each other as our decision maker with the right to make decisions about our care rather than signing a “living will” to refuse potential future treatments or set possible future conditions like dementia where we would want treatment stopped or withheld. Instead, we want all current options, risks and benefits of treatment fully explained to the decision maker based on the current condition.

I also encourage people to check out information sites like the Healthcare Advocacy and Leadership organization (I am an advisor) and magazines like “Informed-A Guide for Critical Medical Decisions”  which has sections explaining ventilators, CPR (cardiopulmonary resuscitation), feeding tubes, use and misuse of opioids and sedatives as well as other end of life considerations.

Death is a journey we all will take someday. Especially in today’s world, we should protect ourselves and our loved ones by trying to ensure a truly good death.

Surprising Twist to a Good News Story You May Have Seen

TV and social media are reporting a wonderful story about Dr. Eric Voigt and Nicole McGuinness. Dr. Voigt, an ENT physician, was watching the “Beachfront Bargain Hunt” TV show (one of my own semi-guilty pleasures) when he noticed that a woman on the show named Nicole McGuiness seemed to have a suspicious lump in her neck. Alarmed, Dr. Voigt turned to Facebook find her and urge her to get the lump checked. Nicole had her lump checked and it was thyroid cancer. She will be starting treatment soon and is very grateful to Dr. Voigt for his sharp eye.

However, this story has a surprising twist.

Nicole was diagnosed in December 2015 with a glioblastoma cancer in her brain at age 29 and was successfully treated and doing well after almost 3 years.

Ironically, Brittany Maynard was also 29 and had a glioblastoma brain cancer when she decided to move from California to Oregon, a state that legalized assisted suicide in 1997. She and her family moved to Oregon so that Brittany could commit physician-assisted suicide before her symptoms became more severe. The date she chose was November 1, 2014. Brittany also agreed to help Compassion and Choices (the former Hemlock Society) use her story to raise funds with the goal of legalizing physician-assisted suicide throughout the US.

After weeks of widespread and sympathetic media coverage, Brittany did take a doctor-prescribed lethal overdose on her planned date.

Ironically and 5 months later, CBS’s TV show “60 Minutes” reported on an innovative treatment for glioblastoma brain cancer . And, as I wrote in my blog “Could Brittany Maynard Have Been Saved?, this innovative treatment was granted breakthrough status by the FDA in 2016.

No one will never know if Brittany could have been one of the people this treatment could help.

CALIFORNIA AND PHYSICIAN-ASSISTED SUICIDE

The first target state for Compassion and Choices’ campaign for legalizing assisted suicide after Brittany’s assisted suicide was her home state of California. Both Brittany’s mother and husband went to California to support a physician-assisted suicide bill. Although the bill apparently died in committee, Governor Jerry Brown called a special legislative session to deal with healthcare spending where the assisted suicide bill was resurrected and passed. Governor Brown then signed it into law in October, 2015. Over 100 people died by assisted suicide in the first six months after the law took effect.

However just last month, a California judge overturned the law stating that the California Legislature violated the law by passing it outside of the scope of health care spending which was given as the reason for a special session and thus was unconstitutional.

This decision was quickly appealed by the California attorney general to the Fourth Circuit Court of Appeals who upheld the judge’s decision.

Now Compassion and Choices has filed an appeal on behalf of a palliative care doctor and two terminally ill patients in California to get California’s law back into law.

Stay tuned for further developments.

CONCLUSION

As a former oncology and hospice nurse, I pray that Nicole has a speedy recovery from her thyroid cancer and I am still saddened by Brittany’s assisted suicide but assisted suicide is not a remedy for cancer.

I remember when just a few decades ago, AIDS was the poster disease for legalizing assisted suicide. Then it became terminal cancer after AIDS became treatable. Now the scary poster disease is Alzheimer’s.

And that’s how the slippery slope works.

Instead, we need realistic hope and real support for people and their families dealing with difficult situations rather than just offering the “solution” of death.