advance directives

New Dementia Directive Developed to Avoid Late-Stage Dementia

nancyvalko advance directives, Alzheimer's, assisted suicide, Cancer, culture, dementia, end-of-life, euthanasia, food and water, law, medical, medical ethics

In the September 25, 2025, issue of the Journal of Law, Medicine and Ethics, there is a shocking article titled “New VSED Advance Directive: Improved Documentation to Avoid Late-Stage Dementia.” VSED means voluntary stopping of eating and drinking.

The authors state:

“People use advance directives to express preferences that direct their future care when they lack decision-making capacity. One form of advance directive, a “dementia directive,” records preferences about living in various stages of dementia. This is important because many Americans want to avoid living with advanced progressive dementia. Unfortunately, traditional advance directives cannot dependably achieve this goal. In contrast, some dementia directives can achieve this goal by directing cessation of manually assisted feeding and drinking. (Emphasis added)

We proceed in six stages. First, we review the prevalence of advanced dementia. Second, we identify the disadvantages of another option for accomplishing the goal of not living into advanced dementia, preemptive VSED. Third, we distinguish notable court cases where dementia directives were unsuccessful. Fourth, we review nine prominent dementia directives, noting how the Northwest Justice Project’s Advance Directive for VSED remedies those shortcomings. Fifth, we review this directive’s legal status. Sixth, we articulate its ethical justification.”

CONCLUSION

I have had a lot of experience caring for people with Alzheimer’s, both personally and professionally. I have written several blogs over the years, such as “Five Things my Mother (and Daughter) Taught Me about Caring for People with Dementia” (2016), Marketing Death and Alzheimer’s Disease (2019), and Alzheimer’s Association Ends Agreement with Compassion and Choices, Marketing Death and Alzheimer’s Disease (2023). In 1988, I wrote an op-ed published in the St. Louis Post-Dispatch titled “FEEDING IS NOT EXTRAORDINARY CARE– DECISION IN THE NANCY CRUZAN CASE ADDS TO THE LIST OF EXPENDABLE PEOPLE“

I remember when my mother was first diagnosed with Alzheimer’s and thyroid cancer. She needed a tracheostomy (a tube in her windpipe), but was able to eat by mouth.

I was shocked when one doctor asked if we wanted her fed, and I responded angrily, “She gets up and eats ice cream out of the refrigerator! Do you want me to tackle her?!”

Of course, I knew what he meant, but he got the message.

Eventually, my mother died peacefully in her sleep at a nursing home after enjoying a meal and laughter with the whole family. It was the kind of death she told me she wanted.

Unfortunately, my younger brother developed Alzheimer’s and diabetes and was critically injured in a fall down the stairs last October. I was able to calm him and carefully feed him.

The doctor recommended a feeding tube to ensure he was getting adequate nutrition, especially for his diabetes.

However, a palliative care team was called in and disagreed with the doctor, telling my sister-in-law that my brother was not going to get better anyway.

I explained to the family that a small feeding tube was available and comfortable, but the family rejected that option.

It took several long days for him to die.

No wonder assisted suicide is being considered for Alzheimer’s patients!

New York Times: A PUSH FOR MORE ORGAN TRANSPLANTS IS PUTTING DONORS AT RISK

nancyvalko advance directives, assisted suicide, brain death, brain injury, civil rights, euthanasia, law, media, medical ethics, organ donation

A bombshell article in the July 20, 2025, New York Times titled “A Push forA Push for More Organ Transplants Is Putting Donors at Risk More Organ Transplants Is Putting Donors at Risk” states:

“People across the United States have endured rushed or premature attempts to remove their organs. Some were gasping, crying or showing other signs of life.” (Emphasis added).

and:

“Organ transplantation had another record year in 2024. That’s great news for all the recipient patients. But there is increasing scrutiny on the costs of the regulatory incentives pushing this success. An alarming number of donors were still alive as transplantation began. “ (Emphasis added)

The next day, the US HHS (Health and Human Services) published a report, “HHS Finds Systemic Disregard for Sanctity of Life in Organ Transplant System,” that reported:

“The U.S. Department of Health and Human Services (HHS) under the leadership of Secretary Robert F. Kennedy, Jr., today announced a major initiative to begin reforming the organ transplant system following an investigation by its Health Resources and Services Administration (HRSA) that revealed disturbing practices by a major organ procurement organization.

Our findings show that hospitals allowed the organ procurement process to begin when patients showed signs of life, and this is horrifying,” Secretary Kennedy said. “The organ procurement organizations that coordinate access to transplants will be held accountable. The entire system must be fixed to ensure that every potential donor’s life is treated with the sanctity it deserves.” (Emphasis added)

HRSA directed the Organ Procurement and Transplantation Network (OPTN) to reopen a disturbing case involving potentially preventable harm to a neurologically injured patient by the federally-funded organ procurement organization (OPO) serving Kentucky, southwest Ohio, and part of West Virginia. Under the Biden administration, the OPTN’s Membership and Professional Standards Committee closed the same case without action.

Under Secretary Kennedy’s leadership, HRSA demanded a thorough, independent review of the OPO’s conduct and the treatment of vulnerable patients under its care. HRSA’s independent investigation revealed clear negligence after the previous OPTN Board of Directors claimed to find no major concerns in their internal review.

HRSA examined 351 cases where organ donation was authorized, but ultimately not completed. It found:

  • 103 cases (29.3%) showed concerning features, including 73 patients with neurological signs incompatible with organ donation.
  • At least 28 patients may not have been deceased at the time organ procurement was initiated—raising serious ethical and legal questions.
  • Evidence pointed to poor neurologic assessments, lack of coordination with medical teams, questionable consent practices, and misclassification of causes of death, particularly in overdose cases. (All emphasis added)

Vulnerabilities were highest in smaller and rural hospitals, indicating systemic gaps in oversight and accountability. In response to these findings, HRSA has mandated strict corrective actions for the OPO and system-level changes to safeguard potential organ donors nationally. The OPO must conduct a full root cause analysis of its failure to follow internal protocols—including noncompliance with the five-minute observation rule after the patient’s death—and develop clear, enforceable policies to define donor eligibility criteria. Additionally, it must adopt a formal procedure allowing any staff member to halt a donation process if patient safety concerns arise.

Secretary Kennedy will decertify the OPO if it fails to comply with these corrective action requirements [PDF].

HRSA also took action to make sure that patients across the country will be safer when donating organs by directing the OPTN to improve safeguards and monitoring at the national level. Under HRSA’s directive, data about any safety-related stoppages of organ donation called for by families, hospitals, or OPO staff must be reported to regulators and the OPTN must update policies to strengthen organ procurement safety and provide accurate, complete information about the donation process to families and hospitals.

These findings from HHS confirm what the Trump administration has long warned: entrenched bureaucracies, outdated systems, and reckless disregard for human life have failed to protect our most vulnerable citizens. Under Secretary Kennedy’s leadership, HHS is restoring integrity and transparency to organ procurement and transplant policy by putting patients’ lives first. These reforms are essential to restoring trust, ensuring informed consent, and protecting the rights and dignity of prospective donors and their families.

HHS recognizes House Committee on Energy and Commerce Chairman Brett Guthrie’s (KY-02) bipartisan work to improve the organ transplant system and looks forward to working with him and other issue-area champions in Congress to deliver reforms.” (All emphasis added)”

CONCLUSION

As I wrote in my October 18, 2022, blog “PLEASE READ BEFORE YOU AGREE TO BE AN ORGAN DONOR”:

“But are ethical lines being crossed in the zeal to obtain organs to transplant?

While most people presume that organs can be removed and transplanted only after “all efforts to save your life have been exhausted” and brain death has been determined, that presumption is no longer necessarily true. (Emphasis added)

Now, organ donation can occur with a person who is in a coma and considered close to death but who does not meet the criteria for brain death. In those cases, an organ donor card or relatives who have agreed to withdraw a ventilator (a machine that supports or maintains breathing) and have the person’s organs removed for transplant if or when the heartbeat stops. This was called DCD or donation after cardiac death until some doctors found that the stopped heart could be successfully restarted it in the patient receiving the transplant!

Now, that ethically questionable procedure is called donation after circulatory death (also DCD) since circulation stops when the heart stops.

If circulation does not stop within 60 minutes, the organs are deemed to be too damaged for transplant and the patient dies without donating organs.

IT GETS WORSE

A September 29, 2022, article in Medpage titled “No Brain Death? No Problem. New Organ Transplant Protocol Stirs Debate-Is it ethical to pull the plug in patients who aren’t brain dead, then restart their hearts?” reported on a new procedure to get more organs:

“With little attention or debate, transplant surgeons across the country are experimenting with a kind of partial resurrection: They’re allowing terminal patients to die, then restarting their hearts while clamping off blood flow to their brains. The procedure allows the surgeons to inspect and remove organs from warm bodies with heartbeats.” (Emphasis added)

The article also said that this new procedure is being criticized by doctors like Dr. Wes Ely and the American College of Physicians, who warned that the procedure raises “profound ethical questions regarding determination of death, respect for patients, and the ethical obligation to do what is best.”

and

“PRESUMED CONSENT AND LAW

Another problem is “presumed consent,” which is the assumption that everyone is willing to donate his/her organs unless there is evidence that they would not want to donate. Illinois narrowly avoided a “presumed consent” statute a few years ago in which people who didn’t want to donate had to file an opt-out document with the Secretary of State. (Emphasis added)

Some countries already have “presumed consent” laws, most recently in England, which states:

“it will be considered that you agree to become an organ donor when you die, if:

  • you are over 18;
  • you have not opted out;
  • you are not in an excluded group”

Even more horrifying, there have also been proposals to link organ donation and assisted suicide as “a potential solution to the organ scarcity problem”. Countries like Belgium and the Netherlands already allow this.

CONCLUSION

Organ donation can truly be “the gift of life”, and innovations such as adult stem cells. The donation of a kidney or part of a liver by a living person generally poses no ethical problems and holds much promise to increasingly meet the needs of people with failing organs. I have a grandson whose life was saved by a stem cell transplant, and another relative who has had 2 kidney transplants.

Personally, I have offered to be a living donor for friends, and my family knows that I am willing to donate tissues, such as bone, corneas, and skin, that can be used after natural death.

Everyone can make his or her own decision about organ donation, but we all must have the necessary information to make an informed decision. (Emphasis added)

When Food and Water Withdrawal is Recommended to Hasten Death

nancyvalko advance directives, Alzheimer's, assisted suicide, culture, dementia, disability, end-of-life, euthanasia, food and water, hospice, law, Living wills, medical ethics, VSED , , , ,

Recently, I was contacted by a man who was concerned about hospice care for his mother.

He wrote:

“I spoke to one hospice service that was recommended and asked about AHN (artificial hydration and nutrition) and I was basically told that if my mother became unconscious, they would not attempt to provide AHN. My mother has dementia and we’ve had a few scares where we were unsure she would recover. I’d like to understand what guideline I should expect the hospice to follow and whether hospice is even worth considering. Are there prescriptive standards of care that I can reference or could you tell me basically what routine care look like?”

I wrote back that I understood his concerns, especially since I recently lost a brother with dementia, diabetes and Crohn’;s disease after a second fall down stairs. H had trouble eating so the doctors recommended a feeding tube.

Unfortunately, a person from palliative care told my sister-in-law that he would not improve so she decided to refuse a feeding tube.

I told her that newer feeding tubes were more comfortable, could make him feel better and were worth a try but she rejected this. She said my brother told her he would not want to I’ve if he developed dementia- like our mother.

It took 4 long days for him to die.

I also told him that I have been writing about this problems for years, including my 2018 blot “‘Living Wills’ to Prevent Spoon Feeding at https://nancyvalko.com/?s=living+wills+to+prevent+spoon+feeding

I have seen the deterioration of medical ethics over 50 years as a nurse from requiring life-sustaining treatment unless it was medically futile or excessively burdensome to whatever is legal.

I would recommend to you two resources from the Healthcare Advocacy and Leadership Organization (HALO):

1, “The Food and Water Dilemma” at https://halovoice.org/wp-content/uploads/5.20.21-Making-a-Difference-8.pdf

2. “Making a Difference: A Guide for Defending the Medically Vulnerable” at https://halovoice.org/wp-content/uploads/5.20.21-Making-a-Difference-8.pdf

CONCLUSION

I have worked in hospice, critical care, etc. for decades and I was glad to be able to care for my patients, my mother and others so that they had dignity, comfort and emotional support at the end of life.

I hope these resources from HALO can help bring vital information, peace and comfort to others and their families.

Journal of Neurotrauma Paper on Withdrawal of Treatment in Severe Traumatic Brain Injury

nancyvalko advance directives, brain injury, disability, futility, Living wills, medical ethics, pro-life, Simon's Law, ventilators/life support

Just before Drs. Jennet and Plum invented the term “persistent vegetative state” in 1972,  I started working with 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, especially if it is true that hearing is the last sense to go. And why not do it to respect the patient as a person?

Then one day a 17 year old young man I will call “Mike” was admitted to our ICU in a coma and on a ventilator after a horrific car accident. The neurosurgeon who examined him predicted he would be dead by morning or become a “vegetable.” The doctor recommended that he not be resuscitated if his heart stopped.

But “Mike” didn’t die and almost 2 years later returned to our ICU fully recovered and told us 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 ‘Mike” was comatose!

After that, every nurse was told to treat all our coma patients as if they were fully awake. We were rewarded when several other coma patients later woke up.

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 some consciousness with verbal and physical stimulation. I have 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 consciousness. 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

Since then, I have written several blogs on unexpected recoveries from severe brain injuries, most recently the 2018 blog “Medical Experts Now Agree that Severely Brain-injured Patients are Often Misdiagnosed and May Recover” and my 2020 blog “Surprising New Test for Predicting Recovery after Coma

However, there is now a new article in the Journal of Neurotrauma titled “Prognostication and Goals of Care Decisions in Severe Traumatic Brain Injury: A Survey of The Seattle International Severe Traumatic Brain Injury Consensus Conference Working Group” about a panel of 42 physicians and surgeons recognized for their expertise of traumatic brain injury that states:

“Overall, panelists felt that it would be beneficial for physicians to improve consensus on what constitutes an acceptable neurological outcome and what chance of achieving that outcome is acceptable. “Over 50% of panelists felt that if it was certain to be enduring, a vegetative state or lower severe disability would justify a withdrawal of care decision.” (Emphasis added)

In addition:

“92.7% of respondents somewhat or strongly agreed that there is a lack of consensus among physicians as to what constitutes a good or bad neurological outcome (Fig. 3A). Similarly, 95.1% of respondents somewhat or strongly agreed that there is a lack of consensus among physicians as to what constitutes an acceptable chance of achieving a good neurological outcome.” (All emphasis added)

RESPONSIBILITY FOR WITHDRAWAL OF CARE DECISIONS

As the article states:

“Although many would report that decision making following devastating TBI is the responsibility of well-informed substitute decision makers familiar with the wishes of a patient,12,25 our survey confirms that the relationship between clinicians and decision makers is complex. As our panelists recognize the marked influence that physicians have on aggressiveness of care, it would seem that in many cases physicians are actually the decision makers and that substitute decision makers are limited by the perceptions (communicated to them. (Emphasis added)

CONCLUSION

Legally, the issue of who makes the decision when treatment or care can be withdrawn as “medically futile” varies.

Often ethics committees are called in to review a situation. Sometimes, as in the Simon Crosier case, families can be unaware that treatment is being withdrawn.

For years, Texas has had a controversial “futile care” law that allows treatment to be withdrawn with the patient or family having only 10 days to find another facility willing to provide care. This was challenged in court and was successful in the Baby Tinslee Lewis’ case . Tinslee eventually went home.

Now a new bill H B3162 has passed in the Texas legislature and is headed to the Governor to be signed and Texas Right to Life states that:

“HB 3162 modifies several aspects of the Texas Advance Directives Act, including the 10-Day Rule. The bill by Representative Klick offers more protections to patients, such as:

  • Requiring the hospital to perform a procedure necessary to facilitate a transfer before the countdown may begin, 
  • Specifying that the process cannot be imposed on competent patients, 
  • Prohibiting decisions from being based on perceived “quality of life” judgments, and 
  • Giving the family more notice of the ethics committee meeting and more days to secure a transfer.”

Every state should consider having such protections for vulnerable patients and their families.

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)