advance directives

Alzheimer’s Association Ends Agreement with Compassion and Choices

nancyvalko advance directives, Alzheimer's, assisted suicide, dementia, end-of-life, law, Living wills, medical ethics, nursing, palliative care, terminal/palliative sedation, VSED

I was surprised to recently learn that the Alzheimer’s Association had entered into an agreement with Compassion and Choices to “provide information and resources about Alzheimer’s disease”.

Thankfully, the Alzheimer’s Association has now terminated that relationship as of January 29, 2023, stating that:

“In an effort to provide information and resources about Alzheimer’s disease, the Alzheimer’s Association entered into an agreement to provide education and awareness information to Compassion & Choices, but failed to do appropriate due diligence. Their values are inconsistent with those of the Association.

We deeply regret our mistake, have begun the termination of the relationship, and apologize to all of the families we support who were hurt or disappointed. Additionally, we are reviewing our process for all agreements including those that are focused on the sharing of educational information.

As a patient advocacy group and evidence-based organization, the Alzheimer’s Association stands behind people living with Alzheimer’s, their care partners and their health care providers as they navigate treatment and care choices throughout the continuum of the disease. Research supports a palliative care approach as the highest quality of end-of-life care for individuals with advanced dementia.” (All emphasis added)

ALZHEIMER’S DISEASE AND COMPASSION AND CHOICES’ RESPONSE

While countries like Belgium and the Netherlands have legalized assisted suicide for Alzheimer’s, no US state allows this-yet.

In the meantime, Compassion and Choices is the well-funded organization promoting medically assisted suicide laws and VSED (voluntary stopping of eating and drinking) for people in states without assisted suicide laws.

Now, Compassion and Choices has a whole section  on their website titled  “Dementia End-of-Life Care- Identifying your preferences before dementia takes hold” stating that:

“One in two older adults die with Alzheimer’s or another form of dementia” and that ”60% of Americans with dementia receive non beneficial burdensome medical interventions.”

Thus, Compassion and Choices insists that:

“Every mentally capable adult has the right to document their desire to decline medical treatments. In the early stages of dementia, patients may also choose to voluntarily stop eating and drinking. To learn more, go to the Compassion & Choices‘ Dementia Values & Priorities Tool and other resources.” (Emphasis added)

IS VSED REALLY AN EASY WAY TO DIE?

As I wrote in my 2018 blog “Good News/Bad News about Alzheimer’s”:

“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 physician 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.

And as I wrote in my 2020 blog “Caring for an Elderly Relative who Wants to Die”, a doctor trying to help his grandfather who did not have a terminal illness but rather was “dying of old age, frailty, and more than anything else, isolation and meaninglessness” found that just voluntarily stopping food and water (VSED) was too difficult and he had to use “morphine and lorazepam” during the “12 long days for his grandfather to finally die.”.

The lessons this doctor said he learned were that:

“despite many problems with physician-assisted dying (physician-assisted suicide), it may provide the most holistic relief possible for people who are not immediately dying, but rather are done living.”

And

“stopping eating and drinking is largely impossible without knowledgeable family members and dedicated hospice care.” (All emphasis added)

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 but I remain alarmed by the all too common attitude that people with Alzheimer’s “need to die” either by VSED or physician-assisted suicide.

I am pleased with the Alzheimer’s Association’s decision to end its agreement with Compassion and Choices.

Why “Living Wills” Are Not Working Well

nancyvalko advance directives, Compassion & Choices, end-of-life, Living wills, medical ethics

In a stunning October 8, 2021 article titled “What’s Wrong With Advance Care Planning?“ in the prestigious Journal of the American Medical Association, three prominent supporters of “living wills” and other advance care documents admit that after 30 years of the promotion of such advance care plan (ACP) documents:

“The assumption that ACP will result in goal-concordant end-of-life care led to widespread public initiatives promoting its use, physician reimbursement for ACP discussions, and use as a quality measure by the Centers for Medicare & Medicaid Services, commercial payers, and others. However, the scientific data do not support this assumption. ” (Emphasis added)

Drs. R. Sean Morrison, Diane E Meier, and Robert M. Arnold are prominent doctors and ethicists at prestigious institutions who have long promoted the advance care documents that are asked about when people enter hospitals, nursing homes, long care facilities, etc.

I have been writing about such documents and their uses and hazards for decades.

ACPs were promoted as essential to document a person’s healthcare wishes like Do Not Resuscitate orders and forgoing interventions like feeding tubes and ventilators in the event that the person is unable to speak for himself or herself. Many such documents also designate a trusted friend or relative to assist in the potential future decision-making process.

All adults have been encouraged to make such documents regardless of their health status because it was assumed that such ACPs would lead to higher quality care at the end of life.

But, as the authors now admit: “The inability of ACP to achieve its desired outcomes represents the gap between hypothetical scenarios and the decision-making process in clinical practice settings.” (Emphasis added)

After 52 years of experience working in ICUs, oncology (cancer), dialysis, hospice and home health as well as caring for relatives and friends, I wholeheartedly agree with the authors that:

“Treatment choices near the end of life are not simple, consistent, logical, linear, or predictable but are complex, uncertain, emotionally laden, and fluid. Patients’ preferences are rarely static and are influenced by age, physical and cognitive function, culture, family preferences, clinician advice, financial resources, and perceived caregiver burden (eg, need to provide personal care, time off from work, emotional strain, out-of-pocket or noncovered medical costs), which change over time.” (Emphasis added)

WHAT DOES WORK?

The authors point to the patient having a trusted person in advance to act as a surrogate decisionmaker and improving the communication with healthcare providers in real time. They also point to:

“training clinicians and preparing patients and families to engage in high-quality discussions when actual (not hypothetical) medical decisions must be made is needed to achieve the outcomes that ACP has not.” (Emphasis added)

However, pitfalls still remain.

Patients and their decisionmakers do need accurate information about their conditions and potential treatments.

However, as I found as a nurse, patients and their surrogate decisionmakers often have negative preconceptions (often reinforced in the media) about treatments such as cardiopulmonary resuscitation, ventilators, feeding tubes, etc.

Unfortunately in hospital situations, the advance care plans with the common DNR (do not resuscitate) directive are sometimes misinterpreted as not wanting to live  or “do not treat” when the person had assumed it would apply only in extreme circumstances. And some healthcare institutions have medical futility policies that allow doctors to overrule the person’s decisionmaker.

In addition, we have well-funded organizations like Compassion and Choices that not only work to get assisted suicide laws passed in every state but also promote their own advance directive to allow the lethal “healthcare option” of VSED (voluntary stopping of food and water) to ensure death.

Particularly in the frail elderly, it can be difficult to determine whether or not a person is truly dying. And while we are never required to accept treatment that is medically futile or excessively burdensome to us, sometimes this can be hard to determine. Far too many times, feeding tubes and other interventions are automatically assumed to be futile and/or burdensome. But there is another alternative that is often ignored: trying an intervention with the option of stopping it if it truly is futile or burdensome.

There are no guarantees in life or death but even finding out that something doesn’t work can be a step forward and can relieve any guilt in the surviving relatives.

CONCLUSION

I was surprised but very pleased to read that the three prominent doctors writing the article “What’s Wrong With Advance Care Planning?” after years of promoting “living wills” and other end of life documents.

But, in the end, the real answer is a return to the traditional medical ethics of “First, do no harm”, a presumption for life and excellent, unbiased information.

That is why my husband and I made our own healthcare directives to require full information about all options, risks and benefits before making medical decisions.

And, most importantly, that we believe that “quality of life” is something to be improved, not judged.

Think the Political and Cultural Divisions in Our Country are Bad? The Divisions in Medical Ethics Could Cost Your or a Loved One’s Life!

nancyvalko abortion, advance directives, AMA, assisted suicide, brain death, brain injury, Compassion & Choices, conscience rights, euthanasia, food and water, law, medical ethics, nursing, Planned Parenthood

I wanted to be a nurse since I was 5. I was drawn to nursing not only because I wanted to help people but also because medical ethics standards were so high, especially in contrast to some of the corrupt business practices that I saw.

I graduated from a Catholic nursing school in 1969 and spent the next 50 years working mostly in intensive care but also in home health and hospice, oncology (cancer), kidney dialysis, volunteer work and on ethics committees.

I first noticed the change in medical ethics when the US Supreme Court’s Roe v. Wade decision in 1973 legalized abortion for the first three months of pregnancy. I was working in intensive care at the time and found that my fellow medical professionals who supported the abortion decision angrily rebuked those of us who were shocked that the first rule of medical ethics we were taught-First, Do No Harm-was eroding.

Then in 1982, my doctor husband and I were shocked by the Baby Doe case where the parents received a judge’s approval to let their newborn son with Down Syndrome die instead of repairing an easily correctable hole between the tube that leads from the throat to the stomach and the  tube that leads from the throat to the windpipe and lungs.  While lawyers were appealing his case and many parents (including my husband and me) wanted to adopt Baby Doe, the newborn starved and dehydrated to death without the desperately needed surgical repair.

My husband asked “What has happened to medical ethics??” but we both knew the answer: babies with Down Syndrome are often unwanted and aborted.

Five months after Baby Doe died, our third child Karen was born with Down Syndrome and a reparable heart defect but the heart doctor gave us a choice to “let” our baby die without surgery. We refused but my former trust in the medical system was shattered.

After I suddenly became a single parent in 1988, I had to return to a paid nursing job to support my three children but found a drastically different medical ethics system.

I found that during the 1970s, medical ethics began to evolve into the newer “bioethics”, even in Catholic hospitals.

This new bioethics has essentially four principles:

1. Respect for autonomy (the patient’s right to choose or refuse treatment)

2. Beneficence (the intent of doing good for the patient)

3. Non-maleficence (not causing harm)

4. Justice (“fair distribution of scarce resources, competing needs, rights and obligations, and potential conflicts with established legislation”) Emphasis added.

Unfortunately, those principles are malleable and then used to justify actions and laws that would have been unthinkable when I graduated from nursing school. That bioethics mindset changed not only medical and nursing education but also the principles that informed our work.

Even the Hippocratic Oath, the oldest and most widely known treatise on medical ethics that forbade actions such as abortion and euthanasia that medical students routinely took upon graduation, has now been revised or dropped at many medical schools.

SOME MEDICAL ETHICS DIVISIONS THAT CAN COST YOU OR A LOVED ONE’S LIFE

Abortion

The American Medical Association, the American Congress of Obstetricians and Gynecologists and the American Nurses Association and other healthcare organization that used to condemn abortion are now supporting “abortion rights”.

Abortion on demand and taxpayer-funded has now been deemed a “civil right” by Planned Parenthood and many Democratic politicians throughout pregnancy to birth and even beyond. Alternatives to abortion such as free pregnancy tests, counseling, ultrasounds, maternity and baby clothes, diapers, car seats, bassinets, etc. are not options at Planned Parenthood but rather at non-profit crisis pregnancy centers.

As a parent of an unwed teenage daughter, I support these services and give thanks for my now 22 year old granddaughter.

Assisted suicide/euthanasia

In the early 1970s when I was a young ICU nurse, none of us medical professionals had even heard of a “living will”. There was a universal presumption for life and “quality of life” was something to be improved, not judged.

Nevertheless, sick people could and did refuse treatment and even check themselves out of the hospital against medical advice. When patients appeared to be dying, they or their families could agree to a “do not resuscitate” (DNR) order. Treatments could be ethically refused when such measures were considered medically futile or excessively burdensome for the patient. But one thing we didn’t do was offer to withhold or withdraw medical care like tube or even spoon feedings to cause or hasten a patient’s death. And it was unthinkable that medical professionals could assist even a dying patient’s suicide.

Unknown to us, all this began to change after Louis Kutner, a Chicago lawyer, wrote a 1969 article in the Indiana Law Journal titled Due Process of Euthanasia: The Living Will, A Proposal” in 1969. (emphasis added).

By 1970, The Euthanasia Society of America (later renamed the Society for the Right to Die) distributed 60,000 living wills. In 1976, California passed the nation’s first “living will” law and in 1990, The US Congress passed the Patient Self-Determination Act that requires information to be given to patients about their rights under state laws governing advance directives (commonly called “living wills), including the right to accept or refuse medical or surgical treatments.

Now, 8 states and the District of Columbia have assisted suicide laws and Compassion and Choices, the largest advocacy group for medically assisted suicide, is using the Covid 19 pandemic to push for telehealth (the provision of healthcare remotely by means of telecommunications) for medically assisted suicide.

Infanticide

In my nursing school 50 years ago, we were taught medical ethics and one example used was the case of a newborn with Down Syndrome who needed life-saving surgery but whose parents refused, choosing to let him die. We were told that the law would protect such children from medical discrimination-even by the parents.

Now we have cases like Charlie Gard and Simon Crosier and others whose parents chose life for their babies with disabilities but were thwarted by doctors and courts.

Organ donation

When I started working in an ICU in 1971, I had questions about the brain death diagnosis for organ harvesting but was told not to worry because there were strict rules.

However and over subsequent years, I discovered that the rules for organ donation have been changing from brain death to other criteria including severe brain injury. There have even been proposals for “presumed consent” state laws where people would have to register an “opt-out” or be automatically presumed to consent to organ donation.

I do not have an organ donor card nor encourage others to sign one. Instead, I once offered to give a friend one of my kidneys as a living donor. Although I was not able to donate then, my family knows that I am willing to donate tissues like corneas, bone, etc. that can be ethically donated after natural death and will only agree to that donation

Conscience rights

Doctors and nurses used to be protected when asserting their conscience rights when refusing to deliberately hastening or causing a patient’s death.

Now, even that protection-which protects both patients and medical professionals-is under attack.

I discovered this personally several years ago when I was almost fired for refusing to increase a morphine drip “until he stops breathing” on a patient who didn’t stop breathing after his ventilator was removed.

CONCLUSION

The bottom line is that everyone must remain vigilant when they or a loved one becomes seriously ill, regardless of the hospital or institution. It is also important not to be afraid to ask questions.

There are also non-denominational, non-profit groups like the National Association of Pro-life Nurses, the Healthcare Advocacy and Leadership Organization and state and national pro-life organizations that have much useful information and resources for patients, families and the public.

The bottom line is that what we don’t know-or allowed to know-can indeed hurt us. We need to demand transparency and the highest ethical standards from our doctors and healthcare system before they can earn our trust.

And without a change in laws, policies and attitudes promoting deliberate death as an answer to human suffering, those of us medical professionals who believe we should never cause or hasten anyone’s death may become an endangered species-as well as our medically vulnerable patients.

Covid 19 and the Culture of Death

nancyvalko advance directives, Compassion & Choices, Covid 19, medical ethics, terninal/palliative sedation, ventilators/life support

“Ironically, the Covid 19 pandemic has pulled back the curtain on how far our healthcare ethics has fallen from the ideal of  respecting every life to the dangerous notion that some lives are expendable-even our own.”

I have written about how the Covid 19 pandemic has resulted in dangerous and unethical responses like ventilator rationing,  unilateral DNRs, and some states ordering nursing homes and other long-term care facilities to accept coronavirus patients discharged from hospitals.

But now,  the Covid 19 crisis has also spawned new ideas such as the American Clinicians Academy On Medical Aid in Dying’s policy recommendations on medically assisted suicide requests by telemedicine in the context of Covid 19  and Covid 19 advance directives aimed at refusing potentially life-saving treatment.

Compassion and Choices, the former Hemlock Society that promotes assisted suicide, voluntary stopping of eating and drinking (VSED) and terminal sedation, now has a Covid 19 toolkit with a special Covid 19 addendum  to add to an existing advance directive to refuse care if a person gets Covid 19. The addendum even contains the question:

“Do you want your healthcare proxy to have the ability to override any of these orders if he or she believes you have a reasonable chance of living a life consistent with your values and priorities based on the information provided by the doctor? Or, do you want these orders followed no matter what?” (Emphasis added)

Another organization “Save Other Souls”, headed by an MD and an ethicist, has an “altruistic” advance directive for Covid 19 that states:

“In the event of shortages during the period of a declared emergency related to COVID-19, and in order to direct resources to others, I am willing to receive palliative care instead of: Critical medical equipment (ventilator, ECMO, etc.), Medication (other than palliative), Placement in a hospital care unit that provides critical care.” (Emphasis added)

Even more disturbing, the National Hospice and Palliative Care Organization (NHPCO) has a new resource for Crisis Standards of Care for the “ethical allocation of scarce medical resources during a disaster” that:

“provides a framework for healthcare professionals to utilize a predetermined framework to determine which individuals will receive life saving care during an emergency event or disaster and which ones will not. With the event of the COVID-19 Public Health Emergency (PHE), it is important for palliative and hospice care providers to be familiar with Crisis Standards of Care.” (Emphasis added)

The National Hospice and Palliative Care Organization (NHPCO), founded in 1978, is the nation’s largest membership organization for providers and professionals who care for people affected by serious and life-limiting illness”. NHPCO states that it “represents the interests of its members and the general public with legislative advocacy that helps to enhance and expand access to care that addresses holistic health and the well-being of communities.” (Emphasis added)

Not surprisingly, the NHPCO has supported  the problematic Palliative Care and Hospice Education and Training Act, currently still in the US Congress awaiting passage.

CONCLUSION

The Covid 19 pandemic is especially terrifying to many people but we must realize that just like any other serious or terminal illness, we must act responsibly and ethically in caring for people with Covid 19.

While medical treatment that is medically futile or unduly burdensome to the person can be ethically refused or withdrawn, refusing or removing ordinary medical treatment or deliberately oversedating a person in order to cause or hasten death is unethical. Even when we think it may help another person get care.

We need to know the difference, especially when it comes to making out “living wills” or other advance directives.

Ironically, the Covid 19 pandemic has pulled back the curtain on how far our healthcare ethics has fallen from the ideal of  respecting every life to the dangerous notion that some lives are expendable-including our own.

 

 

Can Getting a DNR Tattoo be Hazardous to Your Health?

nancyvalko advance directives, end-of-life, futility, law, medical ethics

Cardiopulmonary resuscitation (CPR) is a lifesaving technique developed in the 1960s  for emergencies such as a heart attack or near drowning when a person’s breathing or heartbeat has stopped. Even non-medical people can be trained in basic CPR. However, not every person can be saved with CPR and some who do survive can have some brain damage.

In the early 1970s when I was a young ICU nurse, patients who appeared to be dying or their families could agree to a “do not resuscitate” (DNR) order.

But the 1991 Patient Self-Determination Act, along with the so-called “right to die” cases like Nancy Cruzan and Karen Quinlan, resulted in  the widespread use of DNR orders in hospitals.

So now after years of concern with rising health care costs, older people worried about becoming a “burden” to their adult children, and the push for people to sign “living wills” to refuse certain treatments if they become incapacitated,  it should not be a surprise that a growing number of people-including young, healthy people-are getting DNR (do not resuscitate) tattoos.

But what does that mean when an unconscious person is rushed to an emergency room?

Recently, there was a serious discussion of an actual case and a poll on ethics and DNR tattoos in MedPage, a newsletter for health care professionals.

The case involved a patient who arrived in an emergency room and unconscious after suffering a heart attack while jet skiing on vacation. He had ‘Do Not Resuscitate’ tattoo on his chest. There was a signature under the tattoo. However, the ambulance crew called restarted his heart with a defibrillator. The man was stabilized but hours later he has another heart attack.

The poll question and results from the 1580 votes were:

“Do you comply with the DNR tattoo or not?

Yes: 43.04%

No: 56.96%”

I was appalled that 43% would treat a DNR tattoo as the equivalent of a legal document and I agree with the reasoning of the lawyer/doctor reviewing this case who wrote that “the legally correct course of action would be to temporarily ignore the tattoo unless and until evidence that the tattoo reflects the patient’s current thinking is brought forth.”

PROBLEMS WITH DNR ORDERS

Unfortunately in hospital situations, DNR orders are sometimes misinterpreted as not wanting to live  or “do not treat” when the person had assumed it would apply only in extreme circumstances.

For example, a new nurse was taking care of a young girl with mental retardation who was eating when she suddenly started choking. The new nurse ran to her head nurse in a panic and was told that, because the parents agreed to a DNR order, the nurses could only just hold her hand!

Obviously, relieving the choking by removing the food should have been done.

CONCLUSION

The results of not understanding  DNR orders can be tragic but too many people-including medical professionals-don’t realize the legal and ethical ramifications.

Personally, I chose to make a durable power of attorney for health care naming my husband as the decision maker if I could not speak for myself rather than a “living will” or other advance directive with various treatments to check off if I can’t speak for myself.

I want all the options, risks and benefits of treatments fully explained to my decision maker based on my current condition so that he make an informed decision. This would include the use of a DNR if or when I am dying.

What we all desperately need now is more awareness and common sense when it comes to asking for or allowing a “Do Not Resuscitate” order, especially a DNR tattoo.

 

Medical Experts Now Agree that Severely Brain-injured Patients are Often Misdiagnosed and May Recover

nancyvalko advance directives, brain injury, disability, medical ethics, organ donation, ventilators/life support

People with severe brain injuries from accidents, strokes, illness, etc. are often in comas at first. If they don’t die or spontaneously wake up, they can progress to a “persistent vegetative state” (PVS) described as “awake but unaware” and/or a “minimally conscious state” (MCS) described as “definite, but extremely limited, awareness of self or environment, and limited means of communication”. People with these conditions have had court battles over removing their feeding tubes such as the 1988 Nancy Cruzan (PVS) and the 2001 Robert Wendland (MCS) right to die” cases.

Now, an August 9, 2018 Medscape article “New Guideline for Minimally Conscious, Vegetative States Released”  reveals that 3 specialty societies including the American Academy of Neurology have just published a new guideline with 15 recommendations for “accurate diagnosis, prognosis and treatment for these conditions”.

The reason for the new guidelines, according to Dr. Joseph Giacino, who was one of the authors of the study, is because:

“Misdiagnosis of  DoC (“disorders of consciousness”) is common because underlying impairments can mask awareness — in fact, there is a 40% rate of misdiagnosis, leading to inappropriate care decisions as well as poor health outcomes.” (Emphasis added)

The 223 page new guideline titled “Practice guideline update: Disorders of consciousness” states that:

 “Clinicians should refer patients with DoC (disorders of consciousness) who have achieved medical stability to settings staffed by multidisciplinary rehabilitation teams with specialized training to optimize diagnostic evaluation, prognostication, and subsequent management, including effective medical monitoring and rehabilitative care.”

and

“When discussing prognosis with caregivers of patients with DoC (disorders of consciousness) during the first 28 days after injury, avoid statements suggesting that these patents “have a universally poor prognosis”. (All emphasis added)

According to Dr. Giacino, “Approximately 20% of individuals who have disturbance in consciousness from trauma regain functional independence between 2 and 5 years post-injury, even though they may not return to work or pretrauma functioning.” (Emphasis added)

The study also cites the drug amantadine and brain imaging showing that the brain can still respond normally to stimulus even though the person seems unaware as potentially helpful.

What about the “right to die” for these people? Ominously, the guideline does mention “1 study found that hospital mortality was 31.7%, with 70.2% of those deaths associated with the withdrawal of life-sustaining therapy”. (Emphasis added)

IS THE “40% MISDIAGNOSIS” RATE REALLY NEWS?

Doctors like Dr. Keith Andrews of the UK and US doctor Mihai Dimancescu published  medical journal articles  in the 1990s showing that around 40% of patients in a so-called “persistent vegetative state” were misdiagnosed.  And in 1987, the Royal Hospital for Neuro-Disability in the UK opened a “vegetative state” unit and later developed the “Sensory Modality Assessment and Rehabilitation Technique (SMART)” as a clinical tool for the assessment and rehabilitation of people with disorders of consciousness following severe brain injury.

Despite this, most media stories about cases like Terri Schiavo’s and “right to die”/assisted suicide groups continued to insist that “PVS” is a hopeless condition for which everyone should sign a “living will” to ensure that food and water is withheld or withdrawn to “allow” death.

This happened despite articles like the New York Times’ 1982 article “Coming Out of Coma”.  about the unexpected return of consciousness of Sgt. David Mack over a year after the famous “right to die” neurologist Dr. Ron Cranford  predicted ”He will never be aware of his condition nor resume any degree of meaningful voluntary conscious interaction with his family or friends” before. (Emphasis added)

There have also been articles about people like Terry Wallis who in 2003 regained consciousness after 19 years in a “minimally conscious” state. Unfortunately, such cases were often explained away as just “misdiagnosis” or a “miracle”.

MY EXPERIENCE

Just before Drs. Jennet and Plum invented the term “persistent vegetative state” in 1972,  I started working with these many comatose patients as a young ICU nurse. Despite the skepticism of my colleagues, I talked to these patients as if they were awake because I believed it was worth doing it for the patient if hearing is truly the last sense to go. Because of this, I unexpectedly saw some amazing recoveries and one patient later  told me that he would only respond to me at first and refused to respond to the doctor because he was angry when heard the doctor call him a “vegetable” when the doctor assumed the patient was comatose.

Over the years, I’ve written about several other patients like “Jack”, “Katie” and “Chris” in comas or “persistent vegetative states” who regained full or limited consciousness with verbal and physical stimulation. I also recommended Jane Hoyt’s wonderful 1994 pamphlet “A Gentle Approach-Interacting with a Person who is Semi-Conscious  or Presumed in Coma” to help families and others stimulate healing of the brain. Personally, I have only seen one person who did not improve from the so-called “vegetative” state during the approximately two years I saw him.

CONCLUSION

It is good news that the American Academy of Neurology and other groups are finally rethinking their approach to people with severe brain injuries, especially the recommendation to start rehabilitation therapies as soon as the person is medically stable and the recommendation for  periodic and thorough testing over time.

This is crucial because the often quick prognosis of “hopeless” attached to people with severe brain injuries can-and has-led to early withdrawal of feeding tubes and ventilators as well as DCD (donation after cardiac/circulatory death) for these non-brain dead people.

Dr. Joseph Fins MD and chief of Medical Ethics at Weill Cornell Medical College perhaps says it best when he praises the new guideline as “a real step forward for this population that has historically been marginalized and remains vulnerable” and “suggests that brain states are not static, but dynamic, and that people can improve over time”. (Emphasis added)

Good News/Bad News about Alzheimer’s

nancyvalko advance directives, Alzheimer's, assisted suicide, Compassion & Choices, dementia, food and water, medical ethics, palliative care

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!

“Living Wills” to Prevent Spoon-feeding

nancyvalko advance directives, assisted suicide, dementia, food and water, medical ethics

As so-called “safeguards” for physician-assisted suicide are now starting to be eliminated (See my recent blog “Legal Safeguards, Burdensome Obstacles and Conscience Rights”) , the predicted advance directive (aka “living will”)- already biased against tube feedings-is now on track to include even spoon-feedings.

In an article in Today’s Geriatric Medicine “Judicious Feeding Options at the End of Life” , writer Mike Bassett writes that “In some states, patients can sign directives that allow refusal of feeding when the end of life approaches” and relates the 2013 case of an 82- year-old Alzheimer’s patient whose family filed a lawsuit against a British Columbia nursing home to force the home to stop spoon-feeding her. The lawsuit failed in court but now End of Life Washington , a pro-assisted suicide group, has devised a document called “”My Instructions for Oral Feeding and Drinking”. The document is similar to an advance directive but addresses the signer’s wishes about when to stop oral food and drink in “late-stage” dementia.

Although such a document can be signed, witnessed and notarized, it is not a binding legal document. But this sets the stage for a legal challenge like the British Columbia case but with assisted suicide groups hoping for a different judgment.

The article also interviewed the vice president of constituent services for the Alzheimer’s Association who said that when to stop even oral feeding “should be an important consideration for anyone issuing end-of-life instructions.”

Stephen Drake of the disability advocacy group “Not Dead Yet” made strong points about the dangers of this scheme both in the article and his blog “’End of Life Washington’ Promotes Directive to Prevent Feeding Assistance to Those with Dementia”.

I am not surprised by this new development and here is an excerpt from my September 5, 2016 blog “Ethics and Alzheimer’s-Part Two”:

In 1988 during the Nancy Cruzan case involving a young, non-terminally ill woman in a so-called “persistent vegetative state” whose parents wanted her feeding tube withdrawn so she would die, I was asked if I was going to feed my mother who had Alzheimer’s disease. At the time, my mother had no problems with eating but I knew the real question was about a possible feeding tube later on.

Ironically, I had just written an op-ed on the Cruzan case titled “Feeding is not Extraordinary Care” and I pointed out that if the withdrawal of food and water from people with severe brain injuries was accepted, the pool of potential victims would expand.

I was thinking about people like my mother and, sadly, I was right.

In 1993, just 3 years after Nancy Cruzan died a long 12 days after her feeding tube was removed, a letter in the Journal of the American Medical Association by Dr. Ezekiel Emanuel, one of the future architects of Obamacare, acknowledged that the actual proof purported to show that the Cruzan case met Missouri law requiring “clear and convincing evidence” that Ms. Cruzan would not want to live in a so-called “vegetative” state rested only on “fairly vague and insubstantial comments to other people”.

However, he noted 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

ALZHEIMER’S AND FEEDING TUBES

When I was asked about whether I would feed my mother with Alzheimer’s, I gave the same answer I gave when my baby daughter Karen with Down Syndrome and a heart defect was critically ill in 1983: Their anticipated deaths must be from their conditions, not from deliberate starvation and dehydration.

In the end, neither one needed a feeding tube. My daughter’s kidneys and other organs shut down and, since food or water would cause worse fluid overload, Karen was not given extra fluid and her heart gave out a short time later. In my mother’s case, she eventually needed to be spoon-fed until she quietly died in her sleep.

As a former hospice and ICU nurse, these scenarios are very familiar to me. Multiple organ failure sometimes occurs with critical illness and dying patients often gradually lose their appetites as they approach death. In those cases, we would give what little these people want or need until death. But for people not dying or near death, we made sure that they had at least basic  medical care and the life essentials of food, clothing and shelter. This is-or used to be-simple common sense.

ALZHEIMER’S AS A FATE WORSE THAN DEATH

The easiest way to get people to accept death by starvation/dehydration is to get them to choose it for themselves even before they have a problem.

Thus, media stories of people and their families suffering tremendously because of Alzheimer’s are very persuasive. People fear becoming an economic and emotional burden on their families. Not surprisingly, many people then willingly check off feeding tubes and other medical treatments in their advance directives.

Position papers like that from the American Geriatrics Society and the Alzheimer’s Association can also paint a dark picture:

The Association asserts that research evidence support no medical benefit from feeding tubes in advance dementia and that feeding tubes may actually cause harm in the advanced state of Alzheimer’s. Additionally, it is ethically permissible to withhold nutrition and hydration artificially administer by  vein or gastric tube when the individual with Alzheimer’s or dementia is in the end stages of the disease and is no longer able to receive food and water by mouth

The presumption is that such a death is peaceful and painless when a person is assumed to be unaware in a “vegetative” or late Alzheimer’s state. However, Bobby Schindler has written an account of the reality  of a prolonged starvation/dehydration death on his sister Terri Schiavo that was hidden from the public.

“JOE’S” CASE

Several years ago, I cared for a man with early stage Alzheimer’s who had a serious pneumonia needing a ventilator for a couple of days. Afterwards, Joe (not his real name) was alert and cooperative but the ventilator tube unexpectedly affected his ability to swallow and speak easily. His family asked about a feeding tube and special swallow therapists to try to retrain his throat muscles so that he could eat and drink safely. That is how an even older friend of mine in the same situation but without Alzheimer’s was successfully treated recently.

However in Joe’s case, a neurologist was first called to evaluate Joe’s mental status. I was there as the doctor asked him questions like “How many fingers am I holding up?” The man answered the questions correctly but the neurologist immediately wrote for nothing by mouth including crucial blood pressure medications. He also then recommended no feeding tube to the family. No swallow therapy was ordered. Joe was never asked about this.

When I questioned the neurologist and pointed out that the man had given correct answers by nods and holding up the correct number of fingers when asked, the neurologist responded by saying that the man did not hold up his fingers “fast enough”!

This is the tragic reality when we judge some lives as not worth living.

 

What You Need to Know Now That the District of Columbia Has Become the Seventh Jurisdiction in US to Legalize Assisted Suicide

nancyvalko advance directives, assisted suicide, Compassion & Choices, end-of-life, Kevorkian, law, medical ethics, terninal/palliative sedation

Despite emails and other efforts to encourage the US Congress to exercise its legal authority to stop the Washington D.C. assisted suicide law, the expected congressional action was not completed within the 30 legislative days required.

However, there may be hope on the horizon according to a  February 18, 2017 Washington Times article that said “Congress can still neutralize the Death with Dignity Act by cutting off its funding through the appropriations process.”

What went wrong with the process of nullifying the assisted suicide law in time?  No one seems to know.

But one thing we do know is that Compassion and Choices, the well-funded assisted suicide activist organization, will continue its relentless fight over and over again in every state without an assisted suicide law and in the courts to make assisted suicide legal throughout the US. But even that is not the final goal.

Ominously, we are now seeing assisted suicide leaders like influential lawyer Kathryn Tucker even criticizing the so-called “safeguards” in assisted suicide laws  as “burdens and restrictions”. She now argues that  assisted suicide should be “normalized within the practice of medicine”.

WHAT WE NEED TO KNOW AND DO NOW

We cannot just depend on lobbying our politicians and legislatures to fight assisted suicide only when such bills are introduced in states legislatures or as public initiative votes. We must constantly reinforce our message that every life is worthy of respect and care, not medical termination.

But we must also understand that the assisted suicide/euthanasia movement has had decades of experience in shaping and publicizing its lethal message through carefully crafted steps to convince the public that physician-assisted suicide must be legalized to prevent or end suffering.

As I wrote in my 2013 article “Then and Now: The Descent of Ethics”, the assisted suicide/euthanasia movement has been very busy in the last several decades. I included a short history of the movement that people should know:

The 1970s brought the invention of “living wills” and the Euthanasia Society of America changed its name to the Society for the Right to Die. The so-called “right to die” movement received a real boost when the parents of Karen Quinlan, a 21-year-old woman considered “vegetative” after a probable drug overdose, “won” the right to remove her ventilator with the support of many prominent Catholic theologians. Karen continued to live 10 more years with a feeding tube, much to the surprise and dismay of some ethicists. Shortly after the Quinlan case, California passed the first “living will” law.

Originally, “living wills” only covered refusal of life-sustaining treatment for imminently dying people. There was some suspicion about this allegedly innocuous document and, here in Missouri, “living will” legislation only passed when “right to die” advocates agreed to a provision exempting food and water from the kinds of treatment to be refused.

But, it wasn’t long before the parents of Missouri’s Nancy Cruzan, who was also said to be in a “vegetative” state, “won” the right to withdraw her feeding tube despite her not being terminally ill or even having a “living will.” The case was appealed to the US Supreme Court, which upheld Missouri law requiring “clear and convincing evidence” that Nancy Cruzan would want her feeding tube removed, but, in the end, a local judge allowed the feeding tube to be removed. Shortly after Nancy’s slow death from dehydration, Senators John Danforth and Patrick Moynihan proposed the Patient Self-Determination Act (never voted upon but became law under budget reconciliation), which required all institutions to offer all patients information on “living wills” and other advance directives. Since then, such directives evolved to include not only the so-called “vegetative” state and feeding tubes but virtually any other condition a person specifies as worse than death and any medical care considered life-sustaining when that person is deemed unable to communicate.

But this “choice” is becoming an illusion. In 1999, Texas became the first state to pass a medical futility law to allow doctors and/or medical committees to  override advance directives and patient or family decisions to continue life-sustaining treatment on the basis that doctors and/or medical committees know best when to stop treatment.

In the 1990s, Jack Kevorkian went public with his self-built “suicide machines”  and the “right to die” debate took yet another direction. By the end of the decade, Oregon became the first state to allow physician-assisted suicide. At first, the law was portrayed as necessary for terminally ill people to die with allegedly unrelievable pain. Within a short time, though, it was reported that “according to their physicians, the patients requested assistance with suicide because of concern about loss of autonomy and control of bodily functions, not because of concern about inadequate control of pain or financial loss.”

Other states eventually followed Oregon but efforts to pass assisted suicide laws often failed in other states so Compassion and Choices (the former Hemlock Society) promoted palliative/terminal sedation and VSED (voluntary stopping of eating and drinking) as a legal alternative to assisted suicide in states without such laws.

Compassion and Choices has found much success in working with sympathetic news outlets and pollsters to encourage the public and even medical professionals to support assisted suicide.

Even TV’s popular Dr. Phil McGraw hosted a 2012 segment featuring a Canadian woman who wanted her adult disabled children to die by lethal injection. Ironically, the mother, along with former Kevorkian lawyer Geoffrey Feiger, argued that removing their feeding tubes was an “inhumane” way to end the lives of the adult children. Tragically, when the studio audience was polled, 90% were in favor of lethal injections for the disabled adults. Disability organizations protested after the show, writing that “By conveying social acceptance and approval of active euthanasia of individuals with disabilities by their family members, the segment threatens their very lives”.

Exploiting the natural fear of suffering most people have has also led to a growing acceptance of the premise that it can even be noble to choose death instead of becoming a burden on family members or a drain on society. It is up to us to combat this attitude of despair by  not only educating ourselves and others about the facts and dangers of assisted suicide but also by offering hope and support to those of us most at risk.

Should Ethics Committees be Death Panels?

nancyvalko advance directives, Compassion & Choices, disability, futility, law, medical ethics, Simon's Law

I volunteered to serve on a newly started hospital ethics committees in the 1990s. While I wanted to help analyze difficult cases and serve as a resource for hospital personnel with ethical concerns, I became increasingly alarmed when I saw cost containment and judgments based on “quality of life” brought up as decisive factors by others on the committee.

I understood more when I researched the beginnings of ethics committees.

BACKGROUND

After numerous failed attempts to legalize euthanasia, the Euthanasia Society of America invented the “living will” in 1967 as a first step in gaining public acceptance of euthanasia by promoting a so-called “right to die”. The group achieved much success by publicly promoting “living wills” as a patient rights document that would give people and/or their families  choice and control at the end of life or, especially after the 1976 Karen Quinlan case, if their quality of life was considered too poor.

Karen Quinlan’s case (where despite predictions,  she continued to live for years after her ventilator was removed) effectively extended the “right to die” to non-terminally ill people said to be in a “persistent vegetative state”, a term invented in 1972 to describe brain-injured people who were awake but assumed unaware.

The later cases of Nancy Cruzan and Terri Schiavo  further extended the “right to die” to withdrawal of feeding tubes and other basic medical care.

Eventually the Euthanasia Society of American became The Society for the Right to Die and finally evolved into Compassion and Choices and the “right to die” became “death with dignity” by lethal overdose.

ETHICS COMMITTEES

Ethics committees in hospitals began to emerge after the Quinlan case as an alternative to controversial court cases and became more prevalent in the 1980s, especially after the Baby Doe case in 1982. That case involved a newborn boy with Down Syndrome and an easily correctable defect that prevented him from eating safely. The parents refused the surgery and were upheld by a judge. An appeal was started but the baby died of starvation and dehydration before his appeal could be heard. Disability, pro-life and other groups and individuals were outraged.

Concerns about lethal medical discrimination against infants with disabilities resulted in the Baby Doe Regulations mandating maximal care to any impaired infant, unless certain exceptions are met.

However, there was much medical and legal opposition to these rules and:

“By the end of 1984,  the American Academy of Pediatrics and the American Hospital Association issued statements supporting the use of interdisciplinary ethics committees as an alternative to governmental investigation in such cases.” (Emphasis added)

AN UNEXPECTED PROBLEM

But a surprising development happened on the way to privatizing life and death decisions through ethics committees.

Some people and families resisted and insisted that medical treatment be continued for themselves or their loved ones despite a “hopeless” prognosis and the recommendations of doctors and/or ethicists to stop treatment. Many doctors and ethicists were appalled that their expertise would be challenged and they theorized that such families or patients were unrealistic, “in denial” about the prognosis or were mired in guilt or dysfunctional family relationships.

However, these doctors and ethicists were shocked when in 1991, a court ruled in favor of the husband of Helga Wanglie when he insisted that treatment be continued for his wife despite a “persistent vegetative state” diagnosis.

That court decision was widely criticized in ethics circles and in 1999, Texas enacted a medical futility law.

THE TEXAS ADVANCE DIRECTIVES ACT

In 1999, Texas became the first state to expressly permit doctors to stop life sustaining treatment without consent after a review process by an ethics committee. According to the Texas Advance Directives Act, when care is deemed “futile” or “inappropriate” and the patient or family disagrees,  the patient or family is given 10 days to find another health facility for the patient and pay for “any costs incurred” in the transfer. “If a provider cannot be found willing to give the requested treatment within 10 days, life-sustaining treatment may be withdrawn unless a court of law has granted an extension. “ (Emphasis added)

Thus an ethics committee becomes the equivalent of a death panel.

This kind of ethics committee overreach has now spread far beyond Texas. For example in 2002, I was involved in a similar a case in Missouri involving a brain-injured man despite the state not having a Texas-style law.  It was difficult to find another health care facility to accept the man within the 2 week deadline given by the hospital but ultimately the man not only survived but recovered after the transfer.

The Texas law is now being challenged in the case of Evelyn Kelly, individually, and on behalf of the estate of David Christopher Dunn v Harris Methodist Hospital, a case where a terminally ill, conscious man’s mother fought the ethics committee’s decision to remove his ventilator.

Although Mr. Dunn has since died, the case continues on the question of whether the Texas law is constitutional or not.

In the summary judgement motion filed, Ms. Kelly and her lawyers state that the ethics committee’s action “is an alarming delegation of power by the state law” and “is a far cry from the due process intended to protect the first liberty mentioned in Article 1, Section 19 of the Texas Constitution and that of the Fourteenth Amendment”. (Emphasis added)

Mrs. Kelly and her lawyers make a good point. How can a life and death decision be automatically delegated by law to an unregulated, unaccountable group of individuals outside the legal system?

Even worse, how can the right to live have less legal protection than the “right” to be dead?

The answers to these questions are critically important.