An “Acceptable” Prejudice

This week, Fox News had a story  about John Cronin, a young man with Down Syndrome who, with his father, founded and runs what is now a $4 million dollar company called Crazy Socks.

This story follows the February announcement that the new Gerber Spokesbaby is Lucas Warren who had Down Syndrome. The famous baby food company stated that Lucas “exemplifies Gerber’s longstanding heritage of recognizing that every baby is a Gerber baby.” (Emphasis added)

However, this past week, the influential ethicist Arthur L. Caplan, PhD wrote a commentary titled “Should It Be Harder to Get Abortions for Down Syndrome Babies?”
for Medscape, a password protected medical news website for health professionals.

In his commentary, ethicist Caplan recognizes the worries that “Down Syndrome is becoming increasingly rare in Europe and the United States” because of prenatal testing and abortion.

But he contends that because:

“In recent years, we have even seen kids with Down syndrome appearing on cheerleading squads, or being put into beauty pageants. It’s clear that there has been movement to not exile or isolate children in the United States with Down syndrome and to try and get them more mainstream.” (Emphasis added)

Nevertheless, ethicist Caplan accepts the ultimate “exile” of Down Syndrome by abortion because “After all, legally, you don’t have to have any reason to decide to end the pregnancy.” (Emphasis added) He additionally cites polls showing high public support for abortion for “genetic  or hereditary diseases”.

Therefore he also criticizes the few states that have passed laws to protect unborn babies testing positive for Down Syndrome from abortion. (Emphasis added)

Dr. Caplan says he is not against “offering information to parents” about Down Syndrome but he is against “mandating” that such information be given.

Perhaps Dr. Caplan has forgotten that in 2008, the Kennedy Brownback law “Prenatally and Postnatally Diagnosed Conditions Awareness Act” was overwhelmingly passed by both houses of Congress and signed into law “(t)o amend the Public Health Service Act to increase the provision of scientifically sound information and support services to patients receiving a positive test diagnosis for Down syndrome or other prenatally and postnatally diagnosed conditions.”

DOWN SYNDROME AND PREJUDICE

Unfortunately, prenatal discrimination naturally leads to postnatal discrimination as I personally discovered when my husband and I had our daughter Karen who had Down Syndrome and a heart defect. We were shocked when the cardiologist gave us the option of refusing cardiac surgery and letting her die despite the excellent chance for survival with surgery.

Although we chose life for our daughter, we later found that Karen was secretly made a “Do not Resuscitate” (DNR) during one hospitalization by our trusted pediatrician who said I was “too emotionally involved with that retarded baby”. Unfortunately, we eventually lost our Karen to complications from pneumonia before her planned surgery.

I’m sure Dr. Caplan would not be in favor of terminating anyone because of race, sex, etc. but he apparently has a “politically correct” blind spot when it comes to abortion.

Ironically, one of the state laws that ethicist Caplan objects to states:

“That Indiana does not allow a fetus to be aborted solely because of the fetus’s race, color, national origin, ancestry, sex or diagnosis or potential diagnosis of the fetus having Downs syndrome or any other disability.”  (Emphasis added)

Sadly, that Indiana law was ruled unconstitutional in 2018 because of the legal “right to abortion” for any or no reason at all.

CONCLUSION

There is no test that will prove that an unborn baby is “perfect”, either before or after birth. For example, many of us have had our so-called “normal” children unexpectedly die or become addicted to illegal drugs years after birth. It is a sad conceit to assume that we can ensure the happiness of ourselves and our families by testing and then controlling which of our unborn babies are allowed to live.

In reality, a 2016 study “Positive attitudes prevail within families of people with Down syndrome” showed that almost 90% of families with members having Down Syndrome reported pride, love and even feelings of enrichment.

And a 2011 study in the American Journal of Medical Genetics titled “Self-perceptions from People with Down Syndrome “ found that “99% of people with Down syndrome indicated that they were happy with their lives”.

Nevertheless, as those of us who have had children with Down Syndrome know, the negative stereotypes of people with Down Syndrome persist despite these studies and often affect the medical professionals and ethicists charged with giving women and families information and options (including adoption) for conditions like Down Syndrome. Incomplete or biased information can be deadly and result in the now up to 90% of mothers who abort their unborn babies after a diagnosis of Down Syndrome.

The world is so much poorer without people like my late daughter Karen who was greatly loved. Prejudice against Down Syndrome justified as the legal “right to abortion” is lethal, not “acceptable”.

Women and their families surely deserve both comprehensive information and support when a prenatal diagnosis like Down Syndrome is made.

And every child, born or unborn, deserves a chance for life.

3 Tips for Safeguarding Your Loved One in a Nursing Home

I have had many relatives and friends who lived in nursing homes and, especially as a nurse, I am always saddened by how few of the other residents had any visitors, even family members. I have even heard relatives say they would just prefer to remember their relative “the way they were”.

This is not only tragic for the family member’s or friend’s psychological well-being but also potentially for their safety. Nursing home residents without visitors are at greater risk of neglect or even abuse. With sometimes inadequate staffing and/or high nurse and aide turnover, it is important that people in a nursing home have someone who knows them to look out for them.

Here are 3 tips that can help safeguard a friend or relative:

  1.  Get to know the staff and tell them about your friend or relative, especially likes or dislikes. Visit at different times or days in order to know the staff and when it is most convenient to talk with them.
  1. Notice “red flags” like poor personal hygiene, unexplained injuries, weight loss, emotional changes, environmental hazards etc. and know who to contact if you see a problem.
  1. Especially if you are have health care power of attorney for your relative or friend, ask about care conferences so that you can attend them. Such conferences usually cover how the resident is doing in terms of activity, possible pain, eating, mobility, etc. It is also crucial to know what medications have been ordered and given, especially the PRN (as needed) ones. For example, you may notice a change such as sleepiness or fatigue that can be helped with a medication change.

CONCLUSION

By 2020, it is projected that the global population of human beings who are 65 and older will surpass those under 5 for the first time in human history. At the same time, families have fewer children, older adults are more likely to have never married or to be divorced and adult children often live far from their parents. This makes it harder for many older people who prefer to live independently in their own homes indefinitely without help.

According to the CDC, 1.4 million people are nursing home residents in the US and, as I wrote in last week’s blog “‘Rational’ Suicide and the ‘Elderly'”, those residents really benefit from visitors as do all of us who volunteer to help the elderly!

 

 

“Rational” Suicide and the “Elderly”

An article in the May, 2018 issue of the Journal of the American Geriatrics Society titled “Rational Suicide in Elderly Adults: A Clinician’s Perspective”  by Meera Balasubramaniam, MD, MPH  recently appeared in both medical and nursing news sources.

Dr. Balasubramaniam begins with a case study of  “Mr. A” who at age 72 is considered a “baby boomer”, along with a whole section on the “baby boomer” generation-those born between 1946 and 1964 (ages 54-72).

Mr. A was a retired widower who had recently undergone successful cancer surgery and used a walker. He had no terminal illness but  he told a nurse that he always entertained the idea of ending his life “while I’m still doing well” and that if his health showed signs of failing or became too arduous, he would consider suicide. He stated “I’ve lived a good life. I’ll see how it goes, but it’s better to die well in my early 70s than have a life in which I have to be anxious before every doctor’s visit or have repeated surgery or end up in a nursing home.” (Emphasis added) A psychiatric consult showed no mental health problem.

Dr. Balasubramaniam says she wrote this article to “explore whether ethical arguments in favor of physician–assisted suicide apply to elderly adults who are tired of living but are not terminally ill”. (Emphasis added)

While claiming to not take a view on “whether suicide in non–terminally ill elderly adults can be rational”,  Dr. Balasubramaniam states that “It is important to consider the possibility that the combination of negative perceptions toward aging and dependency, greater social isolation, increasing access to drugs, greater need for autonomy, and an overall generational familiarity with suicide may be accounting for a higher proportion of older adults like Mr. A expressing the wish to end their lives on their own terms”. (Emphasis added)

DEATH AND THE BABY BOOMERS

It may seem incredible to even consider “tired of life” and older age as a “rational” reason for medically assisted suicide. However, Holland and Switzerland already allow it and the article itself cites the UK group “My Death My Decision” (formerly SOARS, The Society for Old Age Rational Suicide) that supports the idea that mentally competent older adults should have the right to assisted suicide rather than face an uncertain life that may be “fraught with frailty and dependence”.

As a Baby Boomer myself, we baby boomers were among the first teenagers exposed to a growing societal acceptance of new concepts like divorce , “free love” with the help of the birth control pill and legalized abortion, the “population bomb” predicting global cataclysm if people didn’t stop reproducing, the use of illegal drugs like marijuana and LSD for recreation, the rejection of religious principles and the slogan “don’t trust anyone over 30”.

So perhaps it should not be puzzling that people over 55 comprised the majority of people dying by physician-assisted suicide in the latest Oregon report since we saw so many of the traditional civil and moral moorings in society pulling loose when we were at an especially vulnerable age.

CONCLUSION

As one sage said, “Old age ain’t for sissies!” But, of course, this is not a “rational” excuse for legalizing assisted suicide for anyone-of any age.

Still, our older citizens are an especially high risk group for elder abuse, household accidents, money scams, social isolation, age-related medical bias and poor or even dangerous nursing home care.

Having friends, family and a meaningful purpose in life becomes harder when older people see their loved ones die or move far away and physical or mental limitations develop in themselves. Many older people fear losing their independence as well as being a “burden” on others.

Medically assisted suicide is not the answer but what else can we do to help?

We can start with our own family members, friends and neighbors. Like all of us, older people need to feel loved and appreciated. Look for ways to assist an older person that he or she might not have considered or be too embarrassed to ask about.

When I was a young wife and mother, our church parish started a Good Samaritan program to identify and help people with special needs of any age. It was a great success and our parish became more inclusive and accessible to everyone, especially the elderly. That was a benefit to all of us.

Other programs such as visiting one person for one hour each week in a local nursing home have helped some parishes to combat the sad reality I have seen that few people in nursing get  visitors, especially people with dementia.

Many of us naturally feel uncomfortable about going to nursing homes, but such places are usually thrilled to have volunteers and most have training programs.

Personally, my first volunteer activity was as a young teenager in a nursing home and it changed my perception of “old people” and life itself. I was amazed by the wisdom and stories the residents told as well as how much they appreciated anything I did. It was a great experience for a shy, gawky teen like myself.

Many years later, I took my young children to visit their grandmother in a nursing home after telling them what to expect in terms of sights, smells and sounds. Afterwards, my youngest daughter asked why everyone wanted to touch her leg while I held her. When I explained that the residents rarely saw a 2 year old and were so glad to see her, she grinned and said “OK!”.  She understood even at that young age.

In a society that seems to constantly celebrate youth and health, we need to make sure that our elderly also feel valued and supported.

And we might just save a life!

 

 

 

 

A Legacy for Jahi McMath

As a mother who has lost two beloved daughters, my heart goes out to Jahi McMath’s  mother Nailah Winkfield after the recent loss of her daughter after an almost 5 year battle to save her and have California rescind her death certificate after doctors concluded that Jahi was “brain dead”.

Jahi McMath was only 13 years old when she suffered complications after what was supposed to be a routine tonsillectomy and was declared “brain dead”. But instead of just accepting the diagnosis, her mother insisted that Jahi continue to be treated with a ventilator and have a feeding tube in the hope that she could improve.

The California hospital refused and a death certificate was issued for Jahi. The case made national news with influential ethicists like Arthur Caplan, PhD stating about Jahi that “You can’t really feed a corpse” and “She is going to start to decompose.” Other experts like Dr. Alan Shewmon disagreed.

Jahi’s mother went to court but a judge declared that Jahi met California’s criteria for brain death and that the hospital could remove Jahi’s  ventilator. However, the judge stayed the order for awhile so Jahi’s mother could appeal.

Instead and with the help of lawyers and The Terri Schiavo Life & Hope Network ,  Jahi’s mother was able to get her daughter transferred to New Jersey, a state that allows a religious exemption for determining death solely on the basis of the stopping of breathing and heartbeat instead of “brain death”.

After the transfer, Jahi’s  family released videos showing that not only did Jahi’s  body not deteriorate but also that Jahi seemed to be improving and moving her toes.

Sadly, Jahi unexpectedly died June 22, 2018 from excessive bleeding and liver failure after an operation for an intestinal problem. Jahi’s mother says she does not regret the years-long efforts to save her daughter and maintains that Jahi was able to communicate with me with her hands,” “Sometimes her feet, sometimes her head, but we spoke with her hands.”

A SURPRISING DEVELOPMENT

On April 11, 2018 and before Jahi died, the Harvard Medical School held a conference on “Brain Death and the Controversial Case of Jahi McMath”.

The results of this conference were released just days after Jahi’s  death and, according to The Mercury News, said that:

” Jahi McMath’s  brain showed subtle signs of improvement over the five-year span following the original declaration that she was brain-dead — suggesting a legal ‘resurrection’ from death to life and challenging our widely held understanding of what it means to be officially dead.” (Emphasis added)

And also that Jahi:

continued to grow, developed breasts, had menstrual cycles, digested food, excreted waste, fought off infections, healed wounds and seemed to respond to basic commands, according to medical testimony provided at a conference about the case.” (Emphasis added)

Dr. Robert Truog, the director of the Harvard Center for Bioethics who organized the conference, has long maintained that the legal definition of brain death as the “irreversible cessation of all functions of the entire brain, including the brain stem” was a  “legal fiction”.

But in a July 2, 2018 Mercury News article “Jahi McMath improved after she was declared brain-dead, doctors say”, Dr. Truog also said that “brain death” does not necessarily signify biological death but merely the extreme end of the spectrum of brain injury and that:

Even if (“brain dead”) patients are not biologically dead, their profound neurological impairment means that, for legal purposes, they can be treated as if they are dead.” (Emphasis added)

In the meantime, Jahi McMath now has two death certificates- one in California and one in New Jersey-and her family has a malpractice lawsuit against the original hospital.

CONCLUSION

Jahi McMath leaves behind many who mourn her but also the achievement of bringing public attention to the problems with the “brain death” diagnosis.

Unfortunately, as one new bioethicist wrote in a blog “Redefining Death in the Law” after attending the Harvard conference, with the legal concept of “brain death” undermined, death itself may be reduced to merely a personal choice:

“In the absence of a true biological or moral basis for the current conception of brain death, the law ought to reflect that death is largely a values judgement. Individuals should be allowed to state a preference during advanced care planning as to which definition of death most closely aligns with their personal beliefs. Religious accommodations are a step in this direction, but a more respectful and coherent law would give everyone a choice in defining their own death.” (Emphasis added)

Instead, I would submit that what we really should be doing is giving every brain-injured patient time, treatment and a chance to recover as fully as possible.

Now that would be a great legacy for Jahi McMath!

 

 

Alfie Evans and the Shocking UK Gosport Independent Panel Report

The Baby Alfie Evans’s case this year shocked the world but now we learn his forced death against his parents’ wishes follows a legal and healthcare nightmare in the UK.

Some of us expressed concerns years ago about the UK’s “Liverpool Care Pathway” developed in the 1990s to improve care of the dying by applying “the high standard of palliative care prevalent in hospices to other clinical settings”.  But the “Liverpool Care Pathway” went horribly wrong and in 2009, the UK Daily Mail published an article “Euthanasia by the back door: Hospitals ‘death pathway’ is open to error” with cases of non-dying patients considered “not worth saving” who died from the “combination of dehydration and powerful painkillers”, explaining that:

“Under the Liverpool Care Pathway, doctors can withdraw fluids and drugs from patients if they are deemed close to death. Many are then put on continuous sedation so they die free of pain.

But sedation can often mask signs of improvement, meaning doctors may be closing the door on people who would otherwise live for months.”

In 2013, the British Journal of General Practice published “The Liverpool Care Pathway for the dying: what went wrong?” . The authors acknowledged the problems that led an independent review to call for an end to the Liverpool Care Pathway but concluded that:

“(a)vacuum left by the abolition of the LCP makes a return to the ‘bad old days’ of poor or non-existent communication about dying a real possibility: we would argue that the response to poor use should be right use, not non-use” and  called for “increased funding and training in palliative care and suggest that skills in end-of-life care should become a required competency for all health care professionals.” (Emphasis added)

THE GOSPORT INDEPENDENT PANEL REPORT

More details of this scandal have just now surfaced in a report on the Gosport War Memorial Hospital  where patients were often admitted for rehabilitation or respite care. The report concludes that at least 450 patients had their lives “shortened” by denial of food and water along with powerful painkillers between 1989 and 2000. It details cases and concerns and ultimately acknowledges the families’ years-long pleas for the truth. Here is one excerpt:

“Those (nurses) who raise concerns about the conduct and practice of colleagues are now widely known as ‘whistle-blowers’. To put it into context, it is generally agreed that the NHS (National Health Service) has not been good at protecting people who take such a difficult step; as the documents make clear, the events of 1991 were no exception. Nor should the consequences for whistle-blowers be underestimated: these commonly included disciplinary action and undermining of professional credibility.

“The documents show that, following a complaint to the Trust in 1998 and the police investigation, it should have become clear to local NHS organisations that there was a serious problem with services at the hospital. Although the successive police investigations undoubtedly complicated the NHS response, it is nevertheless remarkable that at no stage was there a public admission of failure or any public apology. Nor was there a proportionate clinical investigation into what had happened. On the contrary, the documents show numerous instances of defensiveness and denial – to families, to the public and the media, and to health service and other organisations.” (Emphasis added)

CONCLUSION

Will charges now be brought against those involved in the Gosport War Memorial Hospital euthanasia deaths? Who knows? The Independent Panel only concluded that:

“With this Report and an online archive of documentation, the Panel has completed its Terms of Reference. The Panel now calls upon the Secretary of State for Health and Social Care and the relevant investigative authorities to recognise the significance of what is revealed by the documentation in this Report and to act accordingly.

But just as important is the question “Has health care now improved?”

Unfortunately, the answer may be no.

As the UK Telegraph reported in 2015 in the article “New NHS (National Health Service) death guidelines ‘worse than Liverpool Care Pathway’”, the Liverpool Care Pathway was supposedly phased out in 2014 in favor of the National Institute of Health and Care Excellence (NICE) guidelines. but families were still reporting poor end of life care, including denial of food and water.

And now, unlike that Liverpool Care Pathway horrors that were hidden for so long, we had the very public case of Baby Alfie Evans this year where courts enforced the doctors’ decision to shorten his life by removing his ventilator, refused his family’s requests to transfer him or take him home and even take away his feedings when he continued to breathe for days after the ventilator was removed.

Apparently, the death culture is apparently very hard to kill in the UK and, as we are finding, also in the US.

“Fatal Flaws”: A Must-See Film

With the American Medical Association considering changing its’ long-standing opposition to physician-assisted suicide despite the recommendations of its’ ethics committee and the California assisted suicide law declared unconstitutional now reinstated pending appeal, assisted suicide/euthanasia groups like Compassion and Choices (the well-funded former Hemlock Society) are ramping up efforts nationwide to legalize assisted suicide.

Along with major media outlets overwhelmingly supporting their efforts and a recent Gallup poll showing  that the “Majority of Americans (73%) Remain Supportive of Euthanasia”, how do we fight against this and educate the public?

One excellent answer can be found in the recently released 80 minute film “Fatal Flaws”.

“Fatal Flaws” features filmmaker Kevin Dunn who spent three years traveling throughout Europe and North American asking the question “should we be giving doctors the right in law to end the life of others by euthanasia or assisted suicide?”

In the film, Mr. Dunn respectfully interviews people and experts on both sides of the issues and the candid testimonies are powerful and moving. I have viewed the film myself and I believe that showings of this film to senior citizen groups, pro-life groups, churches and clergy, medical professionals, etc. would go a long way in educating the public, many of whom are supportive  or unsure of where they stand.

The film was produced in association with The Euthanasia Prevention Coalition. For information on purchasing the  “Fatal Flaws” film and/or the accompanying pamphlets, please go the Euthanasia Prevention Coalition “Fatal Flaws” site.

There will be a preview viewing of the film at the National Right to Life Convention June 29, 2018.

On a personal note: I am speaking at the NRL convention myself on the Alfie Evans’ case June 30, 2018 and I would love to meet those of you attending the convention.

 

 

Good News/Bad News about Alzheimer’s

First the good news:

Alzheimer’s disease is a currently irreversible, progressive brain disorder that slowly destroys memory and thinking skills and, eventually, the ability to carry out the simplest tasks.

However, a new study “Estimation of lifetime risks of Alzheimer’s disease dementia using biomarkers for preclinical disease” shows that “most people with preclinical Alzheimer’s disease will not develop Alzheimer’s dementia during their lifetimes”, according to a mathematical analysis based on several large, long-term studies.

According to the Alzheimer’s Association , the term “preclinical” refers to “a newly defined stage of the disease reflecting current evidence that changes in the brain may occur years before symptoms affecting memory, thinking or behavior can be detected by affected individuals or their physicians”.

Although biomarkers are still being investigated and validated, this new study can be reassuring to many people worrying that, for example, forgetting where they left their car keys means the beginning of Alzheimer’s.

While the cause of Alzheimer’s is still a mystery, research on the disease is massive and ongoing. Currently, there are drug and non-drug treatments that may help with both thinking and behavior symptoms. There is hope.

THE BAD NEWS

With the many negative stories in major media about Alzheimer’s, it is no wonder that people are so afraid of it.

As Deakin University Professor Megan-Jane Johnstone says in her book “Alzheimer’s disease, media representations and the Politics of Euthanasia-Constructing Risk and Selling Death in An Ageing Society”  :

“Alzheimer’s has been portrayed as the ‘disease of the century’ that is poised to have a near catastrophic impact on the world’s healthcare system as the population ages…

This representation of the disease—along with other often used terms such as ‘living dead’, a ‘funeral that never ends’ and a ‘fate worse than death’—places Alzheimer’s as a soft target in the euthanasia debate because it plays to people’s fears of developing the disease and what it symbolizes. It positions Alzheimer’s as something that requires a remedy; that remedy increasingly being pre-emptive and beneficent euthanasia.” (Emphasis added)

While countries like Belgium and Holland have long allowed lethal injections for people with Alzheimer’s , this is forbidden in the US-for now. However, assisted suicide groups are now trying new “living wills” stating that if or when the person is diagnosed “with Alzheimer’s or another incurable dementing disease”, he or she refuses not only a feeding tube but also even assistance with oral eating and drinking to end their lives.

Compassion and Choices, the well-funded former Hemlock society, has long promoted VSED (voluntary stopping of eating and drinking) as a legal alternative to assisted suicide in states without assisted suicide laws. But at the present time, people who cannot make medical decisions because of  conditions like Alzheimer’s cannot sign an advance directive.

So influential major media outlets like the New York Times often publish articles such as the May 30, 2018 article titled “Alzheimer’s? Your Paperwork May Not Be in Order” that quote Dr. Judith Schwarz:

“People should at least understand what the normal process of advanced dementia is about,” Dr. Schwarz said. “Feeding tubes are not the issue…. Opening your mouth when a spoon approaches is a primitive reflex that persists long after you’ve lost the ability to swallow and know what to do with what’s put in your mouth.” (Emphasis added)

Dr. Schwarz’s advice?

“Complete her organization’s Advance Directive for Receiving Oral Food and Fluids in the Event of Dementia.”

But what Dr. Schwarz and others do not want to talk about is the often tragic reality of deliberate death by starvation and dehydration.

Although media articles portray VSED as a gentle, peaceful death, a 2018 Palliative Practice Pointers article in the Journal of the American Geriatric Society  titled Voluntary Stopping Eating and Drinking” states:

“VSED is an intense process fraught with new sources of somatic and emotional suffering for individuals and their caregivers…The most common symptoms encountered after starting VSED are extreme thirst, hunger, dysuria (painful urination due to concentrated urine NV),  progressive disability, delirium, and somnolence.” (Emphasis added)

Most chillingly, the authors state:

 “Because an individual with delirium may forget his or her intention and ask for drinks of water, caregivers will struggle with the need to remind the incapacitated individual of his or her own wishes. This possibility should be anticipated and discussed with the individual in advance. While reminding the individual of his or her prior intentions may feel like coercion, acquiescing to requests for water will prolong the dying process for someone who has clearly articulated the desire to hasten death.” (Emphasis added)

The authors also state that if the patient’s suffering becomes severe, “proportionate palliative sedation and admission to inpatient hospice should be considered”. This is not the so-called peaceful death at home within two weeks that people envision with VSED.

Lastly, on the legal requirement of  a cause on the death certificate, the authors state:

“the clinician may consider including dehydration secondary to the principle illness that caused the individual’s intractable suffering. Although VSED is a self–willed death (as stopping life support might also be), use of the word “suicide” on death certificates in this context is discouraged because in incorrectly suggests that the decision for VSED stemmed from mental illness rather than intolerable suffering.” (Emphasis added)

So, like assisted suicide, the real cause of death is basically falsified with the rationale that the deliberate stopping of eating and drinking to hasten death is just another legal withdrawal of treatment decision like a feeding tube.

CONCLUSION

Years ago, my mother told me that she never wanted to be a burden on her family.

I never told my children that-especially when they were teenagers and already thought I was a burden to their lifestyles! Instead, I told them that the “circle of life” includes caring for each other at all ages and stages. Such caring also eliminates future guilt and leaves a sense of pride that we did the best we could for each other during our lives.

When my mother developed Alzheimer’s in the late 1980s (and later terminal thyroid cancer), a friend asked if I was going to feed her. At the time, my mother was fully mobile and able to get ice cream out of the freezer and eat it. I was shocked and offended.

“Do you want me to tackle her?!” I asked my friend.

“Oh, no!”, he answered, “I was talking about a feeding tube later on.”

I told him that my mother would die of her disease, not from deliberate starvation and dehydration.

Near the end of her life, we did spoon feed my mother and she enjoyed it very much before dying peacefully in her sleep.

For decades now, I have enjoyed caring for many people with Alzheimer’s or other dementias both personally and professionally.  I can attest that such people can be sweet and funny and as well as difficult at times.

Just like the rest of us!

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.

 

 

Doctors Face Scrutiny About Defining Brain Death

Most people who sign organ donor cards believe what organ donation campaigns tell us, such as:

“A person who has sustained a severe brain injury, such as from an accident, stroke or lack of oxygen is put on artificial support.

Doctors work hard to save the patient’s life, but sometimes there is a complete and irreversible loss of brain function. The patient is declared clinically dead. Only then is donation an option.” (Emphasis added)

This is termed “brain death” and organs are harvested while the patient is still on a ventilator (breathing machine) and has a heartbeat.

But as a May 29, 2018 Wall Street Journal article Doctors Face Scrutiny About Defining Death- As families challenge the determination of brain death, physicians are changing their approach.”, the assumptions about brain death are now being challenged because of cases like Jahi McMath, a 13 year old girl who suffered complications after a 2013 tonsillectomy in California and was declared “brain dead” but who is still alive in New Jersey after her parents refused to allow the ventilator to be removed.

With this article as well as a February 5, 2018 New Yorker magazine article titled “What Does It Mean to Die?” about the McMath case, the public is now becoming aware of the ethical, legal and medical controversies surrounding “brain death” and questions are being asked.

One doctor quoted in the Wall Street Journal article stated:

“Dr. Ross believes states should adopt laws that would allow people to choose their preferred definition (of death). One likely consequence would be that physicians wouldn’t do the brain-death examination if an individual doesn’t want death determined based on neurological criteria, she says.

For some of us, it is more about the quality of life rather than quantity of life,” she says.” (Emphasis added)

Alarmingly, the use of “quality of life” determinations as a basis for withdrawal of treatment decisions expected to end in death are already a serious problem when it comes to people with brain injuries or disabilities.

And doctors like Dr. Doyen Nguyen are writing articles like Brain Death and True Patient Care” that cite encouraging results regarding survival and even some good recoveries when severely brain-injured patients received newer treatments like body cooling and neuro-intensive care.

MY JOURNEY TO DISCOVER THE FACTS ABOUT BRAIN DEATH

Back in the early 1970s when I was a young intensive care unit nurse, no one questioned the new innovation of brain death organ transplantation. We trusted the experts.

However, as the doctors diagnosed brain death in our unit and I cared for these patients until their organs were harvested, I started to ask questions. For example, doctors assured us that these patients would die anyway within two weeks even if the ventilator to support breathing was continued, but no studies were cited. I also asked if we were making a brain-injured patient worse by removing the ventilator for several minutes for the apnea test to see if he or she would breathe since we knew that brain cells start to die when breathing stops for more than a few minutes.

I was told that greater minds than mine had it all figured out.

It was years before I realized that these doctors did not have the answers to my concerns either. After more investigation, I found that my questions were valid.

I also discovered that some mothers declared “brain dead” were able to gestate their babies for weeks or months to a successful delivery before their ventilators were removed and that there were many cases of “brain dead” people who lived for months or years and even grew proportionally and achieved puberty.

If the legal definition of brain death is “irreversible cessation of all functions of the entire brain, including the brain stem” (Emphasis added), these cases would seem to be impossible.

And when I served on a hospital medical ethics committee, I was horrified when one doctor found a less rigorous set of brain death tests at another local hospital and proposed that we adopt this standard so that more of our patients could be declared “brain dead” for organ donation.

Investigating further, I also found “near-miss” cases like Zach Dunlap’s. Zach Dunlap is a young man who was declared brain dead after an accident in 2007. Testing showed no blood flow to his brain and he was being considered for organ donation when a relative discovered a physical response. Four months later, Zach was making plans to return to work. In an interview, he said he heard a doctor say he was dead and it “just made me mad inside”.

CONCLUSION

As I pointed out in my Spring, 2016 NCBC Quarterly journal article titled “Brain Death: Do We Know Enough?” :

“When cases like those of McMath and Dunlap are routinely dismissed instead of rigorously investigated to establish the facts, medical certainty is not achieved and medical integrity is undermined. In addition, when hospitals set their own standards and policies for determining brain death without external accountability, lives—as well as the essential and necessary trust in the health care system—can and possibly will be lost.” (Emphasis added)

Personally, I am not against all organ donation.

In the past, I have offered to be a living donor for a friend who needed a kidney, watched my grandson cured of a rare disease through a bone marrow transplant and told my family that I wanted to donate my corneas and any other tissues that can be taken after natural death.

I am open to new facts but, until then, I refuse an apnea test or any other test to specifically determine brain death if I have a severe brain injury.

And I will not sign an organ donor card.

 

 

Don’t Write Off The Elderly

Late last year, my 95 year old friend I will call “Melissa” fell and fractured her hip which is especially serious at her age. In one study of people over 65 who fractured a hip, up to 50% died in 6 months with the highest mortality rates found in people over 90 years old.

In Melissa’s case, she also had long-term chronic congestive heart failure when she fell in her bathroom at home. She underwent successful surgery and was sent to a rehab facility where she developed a blood clot that went to her lungs. After successful treatment of that complication, she later developed a life-threatening pneumonia after returning to the rehab facility. She had difficulty breathing even with 100% oxygen by mask and 911 was called. I was with her when the ambulance arrived and I followed it to the hospital.

In the Emergency Room, the doctor asked her son and I about how aggressive to be if her heart or breathing worsened. I said “Ask her!” and the doctor was stunned when she vehemently said “Yes!”, even after he explained the potential problems with cardiopulmonary resuscitation and ventilators. My friend has a durable power of attorney naming her daughter as her health decision maker but the doctor wrongly assumed my friend was not able to speak for herself and that Melissa’s son and I were her decision makers. Thanks to our smartphones, Melissa’s daughter and I were in constant phone contact during that time.

After a few weeks in the hospital, Melissa astonished the doctors by recovering with antibiotics and a temporary BiPap (a face mask machine to support her breathing) until the antibiotics took hold. Then, after another short stint in a facility, my friend was finally able to go home with outpatient rehab and help from family and friends.

Going home was Melissa’s first goal.

This week, she accomplished the second of her goals: returning to Friday Mass and breakfast at Chick-Fil-A for her weekly outing with friends again. Her last goal is to celebrate at her 96th birthday party in August and none of us would bet against her achieving that also.

Elder Bias

In a society that seems to almost venerate youth and material success, those of us who are older can be made to feel useless and even a burden.

That can be fatal.

For example and just this month, 104 year old Australian scientist David Goodall who had no terminal illness traveled to Switzerland for physician-assisted suicide and to actively promote it.

According to USA Today, he said that:

My abilities and eyesight are declining, and I no longer want to live this way...I hope something positive will come out of my story and that other countries will adopt a more liberal view of assisted suicide.”

Sadly, he also added that he “had no pressure from his family to change his mind.” (Emphasis added)

David Goodall was a renowned biologist who produced more than 100 research papers and earned three doctorates when:

“In 2016, at 102, the university ordered him to leave his office, calling him a safety risk to himself. Goodall challenged the decision, which was reversed after an outpouring of public support.

Earlier this year, however, Goodall fell while at home alone in his one-bedroom apartment and remained on the floor for two days until he was found by his cleaner, according to The New Daily.

Afterward, Goodall said he was considered incapable of looking after himself. Moreover, most of his friends were dead.”

Philip Nitschke, director of Exit International, a right-to-die organization in Australia called Goodall’s “story of elective, rational suicide by the elderly is an important one.” (Emphasis added)

CONCLUSION

What a sad, depressing story Mr. Goodall’s story is compared to Melissa’s!

This should be a wake-up call to the rest of us not only about the frightening expansion and promotion of physician-assisted suicide but also about how all of us need to recognize the value, wisdom and even inspiration of older people.

We must also recognize that we all need help at some point in our lives. We are totally dependent on others when we are born and many of us need at least some help near the end of our lives. But when we truly care for each other, both the helper and the person being helped are enriched to live their best lives.