Compassion & Choices

“Repairing Our View of Dementia”

nancyvalko Alzheimer's, Compassion & Choices, culture, dementia, medical ethics

I have written often on the subject of dementia, most recently in my blog “Alzheimer’s Association Ends Agreement with Compassion and Choices” about the lethal discrimination against people with dementias like Alzheimer’s.

Having cared for a mother with Alzheimer’s as well as many patients and relatives of friends with dementia, I have found great satisfaction working with people with dementia. Helping them enjoy activities like music, tv, talking about past and present memories and laughing has been a real joy for me. Dementia does not automatically rule out a sense of humor or insight.

So I was delighted to find an article “Repairing Our View of Dementia“ in the Journal of the American Medical Association Neurology.

The author, Sujal Manohar, BS, BA, wrote:

“It is a rewarding experience each time I lead a virtual art gallery tour for adults with dementia. Though we are over 1000 miles apart physically and multiple decades apart in age, we connect over artwork through the Reflections Program at the Nasher Museum of Art at Duke University. However, I did not expect that one comment from a participant—sparked by an art piece—would lead me to reconsider societal expectations and our care of adults with dementia.” (Emphasis added)

“As I shared images of the Radical Repair Workshop, 1 participant was intrigued by the idea of broken objects. He asked the group what we do with things when they are broken. Reflecting on his own experience, he questioned what we could do with him now that he was broken. He paused for a moment, then wondered aloud whether he had any use. He was well aware of his cognitive changes, insidious yet undeniable; the participant knew he was not functioning the way he once did.” (Emphasis added)

Mr. Manohar responded:

“I explained that these artworks showed us that all objects are valuable, even if they do not serve their original purposes. They can come together to make something beautiful. I emphasized that objects can be used in various ways and everyone has challenges and differences—that does not mean they aren’t valuable.” (Emphasis added)

Mr. Manohar also encourages using not only the perspectives of caregivers and healthcare professionals but also the person experiencing dementia, his or her social history and finding ways to give the person purpose that accentuate their strengths rather than focusing on their challenges..

He also makes a good point that helping people with dementia find meaning in in their lives many also help their caregivers who often experience can experience depression and difficulty managing their own feelings while providing support.

Mr. Manohar’s insights and positive attitude can hopefully help our society reevaluate the worth and value of people with dementia and improving their lives as well as those who care for them..

Our society itself desperately needs this.

What Will It Take?

nancyvalko abortion, assisted suicide, brain injury, Compassion & Choices, culture, disability, euthanasia, law, medical ethics, Planned Parenthood, pro-life

I recently wrote a blog titled “The War Against Crisis Pregnancy Centers Escalates” about the attacks on crisis pregnancy centers after the Dobbs v. Jackson Women’s Health Organization decision returning abortion law to the individual states was outrageously leaked.

 Now that the final Dobbs v. Jackson Women’s Health Organization decision  is public, the violence against crisis pregnancy centers and churches has continued with few if any arrests.

However, now even pro-life individuals have been targeted.

For example, an 84-year-old pro-life volunteer was shot on Sept. 20 while going door-to-door in her community to talk about a ballot measure concerning abortion in Michigan. Thankfully, she is expected to recover.

Even more disturbing and over the last weekend, was the news that the FBI raided the home of a pro-life advocate Mark Houck and arrested him in front of his 7 crying children for the alleged crime of “Assaulting a Reproductive Health Care Provider”.

According to the National Review, Mrs. Houck “described an incident in which her husband ‘shoved’ a pro-abortion man away from his 12-year-old son after the man entered ‘the son’s personal space’ and refused to stop hurling ‘crude… inappropriate and disgusting’ comments at the Houcks.” The man did not sustain any injuries but did try to sue Houck. The charges were later dismissed.

WHAT WILL IT TAKE TO RESOLVE THE NATIONAL TURMOIL SURROUNDING ABORTION?

I was a young intensive care unit nurse when the Supreme Court’s Roe v. Wade decision came down in 1973. Like most people I knew, I was surprised and shocked when abortion was legalized. However, I quickly found that my medical colleagues were split on the issue, and I was vehemently attacked for being against abortion. I was even asked what I would do if I was raped and pregnant. When I replied that I would not have an abortion and would probably release the baby for adoption, I was ridiculed. Our formerly cohesive unit began to fray.

But I was professionally offended by the pro-life argument that legalizing abortion would lead to the legalization of infanticide and euthanasia.  

It was one thing to deny the truth with an early and unobserved unborn baby, but it was quite another to imagine any doctor or nurse looking at a born human being and killing him or her.

But I was wrong.

As I wrote in my 2019 blog “Roe v. Wade’s Disastrous Impact on Medical Ethics”, personal and professional experiences opened my eyes to the truth.

I have seen the push for “choice” to expand to abortion for any reason up to birth, infanticide and medical discrimination against people with disabilities, including my own daughter who had Down Syndrome.

I wasn’t long until “choice” also became the heart of the “right to die” movement to include to include legalized assisted suicide and euthanasia, withdrawal of feedings from people with serious brain injuries whose “choice” was exercised by family members or doctors and even the voluntary stopping of eating and drinking (called VSED by the pro-death-choice group Compassion and Choices).

With VSED, Compassion & Choices maintains that:

“Many people struggle with the unrelieved suffering of a chronic or incurable and progressive disorder. Others may decide that they are simply “done” after eight or nine decades of a fully lived life. Free will and the ability to choose are cornerstones of maintaining one’s quality of life and dignity in their final days”.  (All emphasis added)

CONCLUSION

I have long preferred the term “respect life” to “anti-abortion” because obviously we should respect the lives of all people at any age or stage of development.

But this doesn’t mean anger or vilification of others.

Over the years I have written, spoken, debated, etc. people who do not agree with the respect life philosophy, but I never became angry.

I also found that listening to and not judging others-especially people in crisis-was crucially important.

For example and many years ago, I ran into an acquaintance I will call Diane and I congratulated her on her obvious pregnancy.

I was stunned when she replied, “Don’t congratulate me yet. I might not be pregnant.”

Diane, the mother of a 5-year-old boy, went on to explain that she was awaiting the results of an amniocentesis and said, “I know what you went through with your daughter but I can’t give up my life like that. If this (the baby) is Downs, it’s gone.”

I reassured her that the test would almost surely show that her baby was ok, but I added that if the results were not what she expected I would like her to call me. I promised that I would give her any help she needed throughout the pregnancy and that my husband and I or even another couple would be willing to adopt her baby. She was surprised, as I later found out, both by my reaction and the information about adoption.

Diane gave birth to a healthy baby girl a few months later and ran up to me to apologize for her comments, saying that she probably would not have had an abortion anyway. But I understood her terrible anxiety. Society itself seems to have a rather schizophrenic attitude towards children with disabilities. Special Olympics is considered inspirational but Down’s Syndrome is too often seen as a tragedy.

Whether it is abortion or legalized assisted suicide, we must be prepared to help desperate people either personally and/or referring them to a crisis pregnancy center or suicide hotline.

Every life deserves to be respected.

Pain, Choice, and Canada’s now “most permissive euthanasia legislation in the world”

nancyvalko assisted suicide, Cancer, Compassion & Choices, culture, dementia, disability, economics, end-of-life, euthanasia, hospice, law, medical ethics, mental health

In his excellent July 10, 2022 blog, Alex Schadenberg, chair of the International Euthanasia Prevention Coalition, reveals that now “Canada’s medical assistance in dying (Maid) law is the most permissive euthanasia legislation in the world”.

He says “Canada’s MAiD law currently allows suicide facilitation for persons with disabilities and is on track to expand in March 2023 to those living with mental illness. “ (Emphasis added)

How did assisted suicide/euthanasia laws get so far and so fast down the proverbial “slippery slope”?

In my December, 2016 blog “Pain and ‘Choice’”,  I wrote about how I saw the warning signs when I was a new nurse in 1969.

Here is my blog:

PAIN AND “CHOICE”

December 15, 2016 nancyvalko 

It was 1969 and I was fresh out of nursing school when I was assigned to a patient I will call “Jenny” who was thirty-two years old and imminently dying of cancer. She was curled up in her bed, sobbing in pain and even moaned “just kill me.” The small dose of Demerol I injected into her almost non-existent buttocks every four hours “as needed” was not helping. I reassured Jenny that I was immediately calling the doctor and we would get her more comfortable.

However, I was shocked when the doctor said no to increasing or changing her medication. He said that he didn’t want her to get addicted! I told him exactly what Jenny said and also that she was obviously very close to death so addiction would not be a problem. The doctor repeated his no and hung up on me.

I went to my head nurse and told her what happened, but she told me I had to follow the doctor’s order. Eventually, I went up the chain of command to the assistant director of nursing and finally the Chief of the Medical Staff. The verdict came down and I was threatened with immediate termination if I gave the next dose of Demerol even a few minutes early.

I refused to abandon Jenny so for the next two days before she died, I spent my time after my shift sitting with her for hours until she fell asleep. I gave her whatever food or drink she wanted. I stroked her back, held her hand and told stories and jokes. I asked her about her life. I did everything I could think of to distract her from her pain and make her feel better. It seemed to help, although not enough for me. I cried for Jenny all the way home.

And I was angry. I resolved that I would never watch a patient needlessly suffer like that again.

So, I educated myself by reading everything I could about pain medicine and side effects. I also pestered doctors who were great at pain control to teach me about the management, precautions, and rationale of effective pain management. I used that knowledge to advocate and help manage my patients’ pain as well as educating others.

I was delighted to see pain management become a major priority in healthcare and even called “the fifth vital sign” to be evaluated on every patient. I saw new developments like nerve blocks, new drugs, and regimens to control pain and other techniques evolve as well as other measures to control symptoms like nausea, breathlessness, and anxiety. Now we also have nutritional, psychological, and other support for people with terminal illnesses and their families.

Best of all was that I never again saw another patient suffer like Jenny despite my working in areas such as ICU, oncology (cancer) and hospice.

TWENTY-FOUR YEARS LATER

When my oldest daughter was 14, she attended a public high school where the science teacher unexpectedly started praising the infamous Dr. Jack Kevorkian and his public campaign for legalized assisted suicide and euthanasia.  Kevorkian’s first reported victim was Janet Adkins, a 54 year old woman with Alzheimer’s in no reported physical pain who was hooked up to a  “death machine” in the back of a rusty van. Mrs. Adkins was just the first of as many as 130 Kevorkian victims, many if not most of whom were later found to have no terminal illness. Kevorkian escaped prosecution-even after he harvested a victim’s organs and offered them for transplant-until the TV show 60 Minutes aired Kevorkian’s videotape showing him giving a lethal injection to a man with ALS (Lou Gehrig’s disease). Shockingly, Kevorkian served only 8 years in prison before he was paroled and eventually became a media celebrity peddling assisted suicide and euthanasia.

My daughter, who never before showed any interest in my speaking and writing on the topic of assisted suicide, now stood up and peppered her teacher with facts about Kevorkian. The teacher asked her where she learned her information and she answered, “From my mom who is a cancer nurse”.

Sarcastically, he responded “So your mother wants to watch people suffer?” My daughter responded “No, my mother just refuses to kill her patients!” End of discussion.

CONCLUSION

But not the end of the story. Tragically, we now have legalized assisted suicide in several states and serious efforts  to expand it to include people without physical pain but with conditions like Alzheimer’s, mental illness or other psychological distress as well as even children.

As Wesley Smith recently and astutely observed:

 “Moreover, the statistics from Oregon and elsewhere show that very few people commit assisted suicide due to physical suffering. Rather, the issues are predominately existential, such as fears of being a burden or losing dignity

The public is being duped by groups like Compassion and Choices that campaign for legalized assisted suicide on the alleged basis of strict criteria for mentally competent, terminally ill adults in unbearable physical pain to freely choose physician-assisted suicide with (unenforceable) “safeguards”.

The emerging situation throughout the world is more like Kevorkian’s dream of unfettered and universal access to medical termination of the lives of “expendable” people. How much easier is that when people with expensive mental health problems, serious illnesses or disabilities can be encouraged to “choose” to be killed?

WHILE PRO-ABORTION VIOLENCE AGAINST PRO-LIFE CRISIS PREGNANCY CENTERS INCREASES, THE WORLD HEALTH ORGANIZATION SAYS CONSCIENCE RIGHTS REGARDING ABORTION MAY BECOME “INDEFENSIBLE”

nancyvalko abortion, assisted suicide, bereavement, Compassion & Choices, conscience rights, culture, law, medical ethics, Planned Parenthood, pro-life

We have been witnessing the rage and misinformation dividing Americans after the outrageous leak of Supreme Court Justice Alito’s draft decision on the Dobbs v Jackson Women’s Health Organization returning abortion laws back to the states since it was reported on May 2, 2022.

Many pro-life crisis pregnancy centers are now being attacked with paint, firebombs, etc. by pro-abortion groups like “Jane’s Revenge”. But as Nicole Ault of the Wall Street Journal points out:

“No woman is forced to go to one of these clinics, where more than 10,000 licensed medical professionals worked or volunteered as of 2019, according to the pro-life Charlotte Lozier Institute. In addition to providing ultrasounds and pregnancy tests, the centers help women get supplies and counseling.”

But then, on June 8, 2022 and during the night, U.S. Marshals protecting the home of Supreme Court Justice Brett Kavanaugh from illegally picketing protesters apprehended an individual with a gun and a knife who readily admitted that “he was there to kill Justice Kavanaugh in response to the leaked draft opinion that indicated the Court might be preparing to overturn Roe v. Wade.”

Now, Jane’s Revenge has issued a call to ‘riot’ against the Supreme Court if it does overturn Roe v. Wade.

Their flyer “DC CALL TO ACTION NIGHT OF RAGE” declares “THE NIGHT SCOTUS OVERTURNS ROE V. WADE HIT THE STREETS YOU SAID YOU’D RIOT. TO OUR OPPRESSORS: IF ABORTIONS AREN’T SAFE, YOU’RE NOT EITHER.’ JANE’S REVENGE.” (Emphasis added)

THE WORLD HEALTH ORGANIZATION ON ABORTION

On March 8, 2022, the World Health Organization (WHO), the international body responsible for public health and part of the United Nations involved in many aspects of health policy and planning, issued its’ “Abortion Care Guideline“.

In the Guideline, WHO recommends “the full decriminalization of abortion” and calls conscientious objection to abortion a major obstacle to making abortion freely available.

According to the WHO recommendations:

“If it proves impossible to regulate conscientious objection in a way that respects, protects and fulfils abortion seekers’ rights, conscientious objection in abortion provision may become indefensible.” (Emphasis added)

CONCLUSION

Personally, when my daughter Karen, born with Down Syndrome and a severe heart defect, died at 5 1/2 months in 1983, my grief was substantially lessened by donating Karen’s clothes, formula, etc. to our local Birthright organization, one of the many pro-life organizations providing help to pregnant women.

Since Karen and as a nurse and mother, I have been able to help advocate for distressed mothers and their families, children and adults with disabilities and, best of all, my own daughter who found she was pregnant in her first year of college and gave birth to my first grandchild.

And I know that the WHO is absolutely wrong in calling conscientious objections to abortion “indefensible”. Conscience rights are critically important for all of us, whether or not we are healthcare providers.

As I wrote in my December 13, 2019 blog “Are We Witnessing the Coming Extinction of Conscience Rights?”:

“With the current support of a predominantly sympathetic mainstream media, well-funded and politically active groups like Planned Parenthood and Compassion&Choices are also putting pro-life health care providers and their supportive institutions in grave danger of becoming an endangered species in law, politics and health care.

If this happens, our health care system will radically change-especially for the unborn, the elderly and people with disabilities.

When dedicated and compassionate people are denied entry into the health care professions because they refuse to deliberately end lives, harassed and/or fired when they refuse to participate in a deliberate death decision and efforts to make religiously based healthcare institutions to allow lives to be ended by “choice”, will any of us ever be able to trust our healthcare system when we need it the most?” (Emphasis added)

A DISTURBING BUT IMPORTANT LOOK INTO THE TRAINING OF DOCTORS FOR MEDICALLY ASSISTED SUICIDE

nancyvalko assisted suicide, Canada, Compassion & Choices, conscience rights, disability, end-of-life, law, medical ethics, mental health

Most people seem to assume that medically assisted suicide is a simple matter of getting a doctor to prescribe a lethal overdose, taking a pill or two and then go to sleep and die. Many seem unaware that a second consulting doctor (or other healthcare provider in some states) must agree.

This view, abetted by polls, well-funded groups like Compassion and Choices as well as a mostly sympathetic mainstream media, is disastrously wrong.

A stunning February 2022 article in Medscape for healthcare providers titled  “Medical Aid in Dying: Your Clinical Guide and Practice Points” exposes some very real problems with medically assisted suicide that are largely hidden from the general public.

But while citing a Gallup poll showing that 74% of the American public support legalizing “medical aid in dying” (their preferred term for medically assisted suicide) as well as 58% of doctors, the article admits that:

“Study data, however, have revealed a discrepancy between attitudes about legalization and willingness to practice. Only 15% to 22% of physicians in favor of legal access to medical aid in dying would be willing or likely to provide such assistance” (Emphasis added)

And citing Oregon, the first state to legalize assisted suicide, the article claims that:

“Pain management and hospice use have improved in Oregon since passage of the Death with Dignity Act” but also that “Opponents of medical aid in dying express concern that in Oregon, more than 70% of patients who elect medical aid in dying are elderly and have cancer–both being commonly associated with depression–but fewer than 5% are referred for psychiatric evaluation”. (Emphasis added)

Tellingly, the article recognizes the toll assisted suicide can take on the medical professionals involved:

“A Mental Note for the Healthcare Provider: Discussion of end-of-life options represents a profound event for both the patient and the healthcare provider. Do not neglect your own self-care while guiding your patient through the emotionality that can be brought on by end-of-life decision-making.” (Emphasis added)

THE MEDICALLY ASSISTED SUICIDE PROTOCOL IS COMPLICATED

It is recommended that the patient does not eat or drink for 6 hours before ingesting the lethal dose called D-DMAPh.

Anti-nausea medication and a gastric motility medication is to be taken 1 hour before ingesting the life-ending medication.

A large dose of Digoxin to slow the heart is taken 30 minutes later and then a compound of anxiolytic, opioid and tricyclic medications are to be swallowed in less than 90 seconds.

Recommendations include:

– adding a favorite liquor may counter the bitterness of the mixture

– a small amount of sorbet can be ingested to avoid potential post-ingestion esophageal burning or distress

-Prepare for the possibility that the medication may not work if not quickly and fully ingested; it is crucial that the patient who self-administers not fall asleep before consuming the full dose-Patients should not take the medicine when alone or in a public place

-kept carefully out of the reach of children and vulnerable adults

-and must be disposed of properly. (Emphasis added)

For special circumstances:

“It is legal in all jurisdictions for physicians, other HCPs, or family members to assist in medical aid in dying but not to administer medical aid-in-dying medications.[1-9] The law requires that the patient self-administer the medication through ingestible means, which may include:

•         Drinking the medication mixture

•         Ingesting through a nasogastric tube

•         Ingesting the medication through a feeding tube, or

•         Insertion through a rectal catheter

Patients are permitted to receive help in preparing or mixing the medication for self-administration, but the patient must take a voluntary, affirmative act (i.e., swallowing or pushing a syringe) and administer the medication him- or herself. Medical aid-in-dying laws do not allow physicians, family members, or anyone else, including the dying person, to administer medical aid-in-dying medication by intravenous (IV) injection, parenteral injection, or infusion.” (Emphasis added)

The article states that decision-making capacity is the basis of informed consent and that:

“Guidance begins with assessment of the patient’s decision-making capacity and understanding of palliative measures as alternatives to or concurrent with medical aid in dying. No matter the practice specialty, HCPs (health care providers) are trained on the art of assessing a patient’s medical decision-making capacity and their ability to understand the situation, appreciate the consequences, reason rationally, and express a choice.” (Emphasis added)

If there is a concern, the patient:

 “must be referred for additional evaluation by a licensed psychiatrist, clinical psychologist, or clinical social worker. The request for aid-in-dying medication does not proceed unless the mental health professional affirms that the patient is free of mental illness, acute psychological distress, or demoralization.” (Emphasis added)

COMPLICATIONS

The article admits that complications such as regurgitation and seizures can occur but says they are infrequent.

Prolonged dying can also occur so the “families should make contingency plans for how to manage such circumstances” and “remain calm and engage with hospice or other support services as needed. Families should understand that to help avoid unnecessary deployment of police and emergency medical personnel, they should not call 911.” (Emphasis added)

The article also warns that:

“Those present at the death may witness the following changes, which frequently occur during the natural dying process: snoring; gurgling noises; changes in rate of breathing; and fluctuations in body temperature that may leave their skin cool, warm, moist, or pale. Physical movements or other external signs of distress are sometimes exhibited, but the internal peace of the person is not disturbed.” (Emphasis added)

Sadly, the article reports that 4% of patients in Oregon “chose not to inform their families of their decision” even though support groups “strongly recommend that at least 1 other person be present” but not the doctor.

LEGAL REQUIREMENTS DIFFER WIDELY BETWEEN STATES

The article illustrates how dramatic the differences are in state laws such as the eligible medical providers in New Mexico to include APRNs (advance practice registered nurses) and physician assistants and no consulting provider is required if the patient is in hospice.

and

“In Hawaii, a mental health evaluation is mandatory for all patients requesting medications under the law. In New Mexico, a mental health evaluation is also required if the patient has a recent history of a mental health condition or intellectual disability.” (Emphasis added)

Required waiting periods to make the second request varies from as little as none in Oregon and New Mexico if the patient is unlikely to survive the waiting period to at least 20 days in Hawaii.

The article also recommends that health care providers familiarize themselves with the assisted suicide group Compassion and Choice’s Doc2Doc helpline that “offers free, confidential telephone consultation with clinicians who are experienced in providing end-of-life medical care”.

Right now, 9 U.S, states (California, Colorado, Hawaii, Maine, New Jersey, New Mexico, Oregon, Vermont,  Washington)  and the District of Columbia have medically assisted suicide laws and 12 states (Massachusetts, Delaware, Minnesota, New York, Pennsylvania, North Carolina, Indiana, Kentucky, Rhode Island, Virginian, Arizona and Utah) have bills in their legislatures.

And there are more states seeking to expand their existing assisted suicide laws such as Vermont S 74  that threatens conscience rights by defining assisted suicide as a “healthcare service” and allows assisted suicide by telemedicine and Washington state HB 1141 that expands the prescriber to PAs (physician assistants), advanced registered nurse practitioners and allows the lethal dose to be sent by mail or courier.

CONCLUSION

Our neighbor Canada is a cautionary tale about the inability to limit medically assisted suicide.

In a June, 2021 article in the Psychiatric Times titled “First, Do No Harm: New Canadian Law Allows for Assisted Suicide for Patients with Psychiatric Disorders” , Dr. Mark Komrad chronicles the expansion of the 2016 MAID (medical aid in dying) law allowing medical euthanasia (the doctor directly administers a substance that causes death, such as an injection of a drug) and physician-assisted suicide for the terminally ill to expand to those “with nonterminal chronic illnesses and permitted euthanasia for those whose psychological or physical suffering is deemed intolerable and untreatable”.

Now, those Canadians “whose only medical condition is a mental illness, and who otherwise meet all eligibility criteria, will not be eligible for MAID until March 17, 2023″. (Emphasis added).

As a nurse with over 50 years of personal and professional experience in hospice, critical care, oncology, etc., I am willing to do anything for sick people– except kill them or help them kill themselves. These people deserve better!

Medically assisted suicide is a dangerous proposition that has proven to be impossible to strictly limit. It also corrupts the essential element of trust we must have in the health care system and makes suicide more attractive to vulnerable people as a way to solve life’s problems.

What is a “Death Doula” and Why is Compassion & Choices so Interested?

nancyvalko assisted suicide, Compassion & Choices, end-of-life, law, medical ethics

Most people have heard of doulas, specially trained people who help pregnant women during pregnancy, labor, birth, and immediate postpartum by providing “emotional, physical, and informational support”.

My daughter used a doula for both of her children and was so happy with the results that she is considering taking the training to become a doula in the future.

But now, there are “death doulas” that have nothing to do with birthing.

As Wesley Smith wrote about in a 2014 article titled “Good Grief: Now It’s “Death Doulas”, there was an op-ed in the LA Times about the Hippocratic oath and the terminally ill by a journalist and medical professor who wrote:

“If we allow medicine to prolong life, should we also allow it to shorten life for the terminally ill?

We could, however, skirt the controversy entirely: What if we created another class of medical professionals known as death doulas, who could fill a gap between treatment doctors and hospice workers?” (All emphasis added)

But “death doula” idea continued and in 2017,  the “National End-of-Life Doula Alliance (NRDA) was formed and even more importantly in 2018:

“a special council within The National Hospice and Palliative Care Organization (NHPCO), the leading hospice and palliative care membership organization in the US, was held. The purpose of the special Council is to provide information and resources to its members, affiliated organizations, and the public regarding the role of end-of-life doulas.” (Emphasis added)

Unfortunately, while the NHPCO “opposes MAID (medical aid in dying) as “a societal option to alleviate suffering”, the American Academy of Hospice and Palliative Medicine (AAHPM) has had a position of “studied neutrality” on the issue of medically assisted suicide since 2007.

According to a New York Times June 2021 article “Death Doulas’ Provide Aid at the End of Life” , there are nearly 800 members in the National End-of-Life Doula Alliance with membership nearly doubling in the past year and increasing interest in training programs such as the International End-of-Life Doula Association, Doulagivers, and the Doula Program to Accompany and Comfort.

Death doulas do not have to be medically trained and death doula training and certification programs can cost as little as the $189.00 holiday special online course at the International Association of Professions Career College for 6 weeks part-time.

According to the New York Times, death doulas “don’t get involved in medical issues” but rather, “they support clients emotionally, physically, spiritually and practically.” Prices for these services “range from $25 an hour on up, although many do it voluntarily.”

WHY IS COMPASSION & CHOICES INTERESTED IN DEATH DOULAS?

Last month, Compassion & Choices (the largest organization attempting to pass assisted suicide laws in every U.S. state) filed an amicus brief in the federal court case Full Circle of Living & Dying v. Sanchez in support of a lawsuit to protect “to protect the First Amendment free speech rights of death doulas in California.”

The plaintiff Full Circle of Living & Dying is described by Compassion & Choices “as a non-profit organization that provides death doula services and home funerals”.

The defendant in the Full Circle of Lining & Dying lawsuit is the California Cemetery and Funeral Bureau which issued a 2019 order to the death doula plaintiffs to:

“immediately discontinue advertising and operating as a funeral establishment until a license is issued by the Bureau” and “threatened fines of up to $5,000 if Full Circle continued to operate without a license.”

Compassion & Choices’ chief legal advocacy officer Kevin Diaz argues in the amicus brief that:

Full Circle “has a disclaimer on its website that they are not funeral directors, do not offer funeral home services, and do not operate out of a funeral home”; that “Full Circle does not need a physical location for its services and the cost of obtaining such a location far exceeds the non-profit’s small budget.”

and added that

“a ruling in favor of the California Cemetery and Funeral Bureau “will force most, if not all, death doulas out of practice.” (Emphasis added)

As Kim Callinan, the President and CEO of Compassion & Choices explains in her 2021 article “Medical Aid in Dying: The Role of Death Doulas” for the National End-of-Life Doula Alliance newsletter:

“Death doulas can play a key role in shifting end-of-life care from a paternalistic to patient-directed system by bringing non-judgmental support to patients and serving as their advocate. This is particularly needed for patients who would like the option of medical aid in dying. All too often, interested and eligible patients are unable to navigate the complicated, multi-step process to access medical aid in dying (aka medically assisted suicide); too many unfortunately die suffering. (All emphasis added)

CONCLUSION

Over more than 52 years, I have cared for many dying people, both personally with friends, my mother and daughter and professionally in cancer units, critical care and home hospice. The people I have cared for range from babies to the very elderly.

My interest in people with terminal or life-threatening illnesses started when I first became an RN in the late 1960s and saw people with terminal cancer routinely secluded in in a private room at the end of a hall.

I asked the more experienced nurses how I should approach these patients and if I should be cheerful or solemn.

These nurses said they didn’t know the answer either so I had an idea. I decided to go visit these patients after I finished my shift and just ask to sit down and speak with them. Many of these wonderful people told me how isolated and lonely they felt when friends and family members treated them differently and we would talk about what they wanted both before and after their expected deaths.

I shared what I learned with the other nurses and family members who were relieved to know how they could help.

Whether or not these people were in hospitals, institutions or at home, the goal was always to help them live as well as possible until death. It was imperative that these people felt loved, respected and cared for even when they seemed to be unconscious. I also saw that the person’s relatives and friends also needed understanding and support. It helped that I personally knew how hard it can be to lose a loved one.

I feel privileged to have cared for my loved ones, friends, patients and their families and I never witnessed an excruciatingly painful death or was tempted to help end a life because I knew how to help.

It will be interesting to see what happens in the Full Circle of Living & Dying v. Sanchez case but I know that no matter whether a person is physically healthy or terminally ill, assisting a suicide is never good healthcare!

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.

The “Population Bomb” Fizzles, but Now There is a Birth Dearth with Grave Consequences in Many Countries

nancyvalko abortion, aging, assisted suicide, Compassion & Choices, culture, disability, economics, end-of-life, family, family planning, law

 Dr. Paul R. Ehrlich was an entomologist (a scientist who specializes in the study of insects)  at Stanford University when he published his bestseller “The Population Bomb” in 1968.  Although initially ignored, it incited a worldwide fear of overpopulation and ultimately became one of the most influential books of the 20th century.

In his book, Ehrlich predicted that unless population decreased, “hundreds of millions of people are going to starve to death” in the 1970s.

That did not happen but 50 years later in a 2018 interview with Smithsonian magazine writer Charles C. Mann, Paul Ehrlich claimed that the book’s main contribution was to make population control “acceptable” as “a topic to debate.”

However, as Mr. Mann wrote:

” But the book did far more than that. It gave a huge jolt to the nascent environmental movement and fueled an anti-population-growth crusade that led to human rights abuses around the world.” (Emphasis added)

But even 50 years later and with the population declining in many countries, Paul Ehrlich continued to insist that:

“Population will fall, either when people choose to dramatically reduce birthrates or when there is a massive die-off because ecosystems can no longer support us. (Emphasis added)

THE HARSH REALITY TODAY

In 1980, China began a strict one child per married couple policy that even included forced abortions for women who did not comply.

In 2015, China raised the limit to two children, citing a “rapidly aging society and a shrinking working-age population”.

China has now increased the number of children to 3 children but as a June 3, 2021 Wall Street Journal article states “China Delivers Three-Child Policy, but It’s Too Late for Many“.

Even with years of declining birthrates, there are fewer young people willing to buck the trend of postponing or forgoing marriage and children.

The result is an aging population with a shortage of children. In one Chinese province almost 40% of the province’s population of 880,000 are 60 or older and there is a surging demand for nursing homes. The local government is looking for private investors to help some 7,000 elderly residents who cannot take care of themselves.

Even beyond China, a May 22, 2021  New York Times article titled “Long Slide Looms for World Population, With Sweeping Ramifications“ recognized that:

“All over the world, countries are confronting population stagnation and a fertility bust, a dizzying reversal unmatched in recorded history that will make first-birthday parties a rarer sight than funerals, and empty homes a common eyesore.” (Emphasis added)

HUNGARY FIGHTS BACK

A replacement rate of about 2.1 is necessary to sustain a population but the population in Hungary had been declining since 1981. It reached an all-time low of 1.23 in 2011.

Katalin Novák, the Minister for Family Affairs in Hungary, has facilitated a family-friendly approach that has seen birth rates start to rise. The birth rate is now up to 1.56, still low but improving.

As Minister Novak states:

“The government’s measures of the past ten years have evidently moved demographics in the right direction. The number of childbirths, abortions, the infant mortality rate, marriages, and divorces have all moved in a favorable direction. This also proves that we have made the right decision when we made family-centered governance a priority and are now on the right path. Families are enjoying government support, and we are helping our youth by giving them the opportunity to start a family whenever they want.” (Emphasis added)

THE SITUATION IN THE UNITED STATES

As of 2019 (the latest year for which data is available), the U.S has the lowest fertility rate on record and the lowest number of births in 35 years.

As the New York Times noted in its article about population decline:

“The change may take decades, but once it starts, decline (just like growth) spirals exponentially. With fewer births, fewer girls grow up to have children, and if they have smaller families than their parents did — which is happening in dozens of countries — the drop starts to look like a rock thrown off a cliff. (Emphasis added)

CONCLUSION

The “population bomb” theory has had unintended and disastrous consequences, even in the U.S. and despite immigration.

In 2018, a US Census Bureau article predicted “The Greying of America: More Older Adults than Kids by 2035” for the first time in US history-joining other countries with large aging populations.

As the US Census Bureau states:

“With this swelling number of older adults, the country could see greater demands for healthcare, in-home caregiving and assisted living facilities. It could also affect Social Security. We project three-and-a-half working-age adults for every older person eligible for Social Security in 2020. By 2060, that number is expected to fall to two-and-a-half working-age adults for every older person.” (Emphasis added)

A country with more older people than children can unbalance a society socially, culturally and economically.

Even worse, legalizing abortion and assisted suicide/euthanasia will only make the situation more dire the US.

Since the US Supreme Court legalized abortion in 1973 with the Roe v. Wade decision,  more than 62,000,000 abortions have been performed and now the new Biden administration wants to roll back restrictions on abortion  and make abortions taxpayer-funded. 

And as efforts by groups like Compassion and Choices to legalize assisted suicide throughout the US has now spread to 9 states and the District of Columbia despite pro-life and disability rights opposition, we should not be surprised if there is another US Supreme court case in the future like the 1997 Vacco v Quill Supreme Court case  that attempted to establish physician-assisted suicide as a fundamental right for the terminally ill like the Roe v. Wade abortion decision legalizing abortion for (initially) just women in the first three months of pregnancy. 

Instead of threats to human beings at the beginning and end of life, we should be welcoming new lives and families as well as caring for the elderly, disabled and poor to improve and stabilize ourselves and our country.

The Assisted Suicide Juggernaut Continues in the U.S.

nancyvalko assisted suicide, Compassion & Choices, conscience rights, euthanasia, food and water, law, medical ethics, nursing

Since Oregon passed the first physician-assisted suicide law in 1997, 8 more states and the District of Washington, D.C. passed assisted suicide laws by 2020. They are:

  • California (End of Life Option Act; approved in 2015, in effect from 2016)
  • Colorado (End of Life Options Act; 2016)
  • District of Columbia (D.C. Death with Dignity Act; 2016/2017)
  • Hawaii (Our Care, Our Choice Act; 2018/2019)
  • Maine (Death with Dignity Act; 2019)
  • New Jersey (Aid in Dying for the Terminally Ill Act; 2019)
  • Oregon (Death with Dignity Act; 1994/1997)
  • Vermont (Patient Choice and Control at the End of Life Act; 2013)
  • Washington (Death with Dignity Act; 2008)

So far in 2021, 13 more states have new proposed assisted suicide bills and 4 states with assisted suicide laws are facing bills to expand their assisted suicide laws.

These 13 states are  Arizona , Connecticut, Indiana, Iowa, Kansas, Kentucky, Massachusetts, Minnesota, Nevada, New Mexico, New York, North Dakota and Rhode Island. Most of these states have been repeatedly hounded for years to pass an assisted suicide law.  

The 4 states with bills expanding their assisted suicide laws are California , Hawaii , Vermont, and the state of Washington.

The expansions range from expanding “qualified medical providers” from doctors to a range of non-doctors including nurses to eliminating so-called “safeguards” such as 15 day waiting periods, in person requests and even to allow electronic prescribing and shipping of lethal overdoses. Compassion and Choices (the former Hemlock Society) and other assisted suicide supporters have long portrayed assisted suicide “safeguards” as “burdensome obstacles”.

CONSCIENCE RIGHTS AND CENSORSHIP

Conscience rights for health care providers has been a very real problem since the 1974 Roe V. Wade U.S. Supreme Court decision legalized abortion in the U.S. The legalization of assisted suicide in several states has made this even worse for nurses, doctors, pharmacists and other healthcare workers. Even healthcare institutions have faced discrimination problems.

The Christian Medical and Dental Association even compiled a long list in 2019 of “Real-life examples of discrimination in healthcare” .

Now, we are seeing censorship. A March 28, 2021 Wall Street Journal op-ed titled “Big Tech Censors Religion, Too“ stated that:

“In January, Bishop Kevin Doran, an Irish Catholic, tweeted: “There is dignity in dying. As a priest, I am privileged to witness it often. Assisted suicide, where it is practiced, is not an expression of freedom or dignity.” Twitter removed this message and banned Bishop Doran from posting further. While the company reversed its decision after public opposition, others haven’t been so lucky.” (Emphasis added)

CONCLUSION

Back in 2014, I wrote a blog “Should a Pro-Life person Become a Nurse” about a worried pro-life student nurse who wrote me asking “what area of nursing can I move into that does not demand that I do things that I absolutely will not do?”

I wrote her back and told her that I had that challenge in several areas I worked in over 45 years but was able to live up to my ethics despite some difficult situations and that I never regretted becoming a nurse.

However, conscience rights are a not a luxury but rather a necessity.

That is why some of us nurses in Missouri worked so hard to get a conscience rights law passed in 1992 after the Nancy Cruzan starvation and dehydration death that, although not as strong as we wanted, is still in effect today. And I was thrilled when the Trump administration announced a new Conscience and Religious Freedom Division  in 2018 to enforce “federal laws that protect conscience and the free exercise of religion and prohibit coercion and discrimination in health and human services”.

Society has long insisted that health care professionals adhere to the highest standards of ethics as a form of for society. The vulnerability of a sick person and the inability of society to monitor every health care decision or action are powerful motivators to enforce such standards. For thousands of years doctors (and nurses) have embraced the Hippocratic standard that “I will give no deadly medicine to any one, nor suggest any such counsel.” Should that bright line to separate killing from caring now be erased by legislators or judges?

Without a strong resistance movement, the assisted suicide movement will only keep expanding. So far, much of the public has been shielded from the real truth by euphemisms and false reassurances from assisted suicide supporters, a mostly sympathetic mainstream media and often spineless professional and health care organizations.

We all must educate ourselves to speak out before it is too late.

Caring for an Elderly Relative who Wants to Die

nancyvalko aging, assisted suicide, Compassion & Choices, disability, end-of-life, food and water, law, medical ethics, nursing, palliative care, terminal/palliative sedation

I was disturbed but not really surprised when I read the October 21, 2020 New England Journal of Medicine article by Scott D. Halpern, M.D, Ph.D., titled “Learning about End-of-Life Care from Grandpa”.

Dr. Halpern, a palliative care doctor and ethicist at the University of Pennsylvania, wrote about his elderly grandfather who had been widowed for the third time and wrote “My life was over too, only existence remained,” in a memoir for his family.

As Dr. Halpern writes, “It was downhill from there” as his grandfather coped with challenges like blindness, deafness and arthritis.

Family members offered to care for him but the grandfather chose to go into an assisted living facility where family members could visit him frequently. But then, Covid 19 visitations cut him off entirely from the outside world.

Eventually, the grandfather was allowed to see relatives one at a time outdoors at the facility.

Nearing his 103rd birthday, the grandfather started asking Dr. Halpern about “any plausible option to hasten death”.

New Jersey had recently approved physician-assisted suicide, but Dr. Halpern was “ambivalent” about that option. In addition, his grandfather did not have a terminal illness but rather was “dying of old age, frailty, and more than anything else, isolation and meaninglessness”.

Alarmingly, Dr. Halpern found that the medical code for this diagnosis called “adult failure to thrive” was being used not only used to access hospice but also to access physician-assisted suicide in some states.

Unable to find a New Jersey doctor willing to use physician-assisted suicide on his grandfather anyway, Dr. Halpern offered his grandfather the option of VSED (voluntarily stopping of eating and drinking) to hasten or cause death that the pro-assisted suicide group Compassion and Choices touts as “natural” and legal in all states.

THE TRUTH ABOUT VSED

Dr. Halpern wrote that his grandfather had trouble refusing food and water on his own. He started and stopped the process a few times.

Dr. Halpern was not surprised, writing that:

“ For people with a consistent desire to end their life, unencumbered by mental illness or immediate threats to their survival, the only alternative — to stop eating and drinking — is just too challenging. Hospice experts around the country had warned me that less than 20% of people who try to do so “succeed,” with most reversing course because of vicious thirst.” (Emphasis added)

Finally, Dr. Halpern’ write that his grandfather said “I just want it over with. Scott, do whatever you need to do.”

Dr. Halpern writes that he consulted his hospice team and began treating his grandfather’s thirst “as I treat other forms of discomfort — with morphine and lorazepam” (Emphasis added)

Even then, it took 12 long days for his grandfather to finally die.

The lessons that Dr. Halpern says he finally learned were that:

“despite many problems with physician-assisted dying, 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

Dr. Halpern obviously loved his grandfather and tried to meet his grandfather’s emotional and physical needs before telling him about the VSED option and eventually adding terminal sedation. And it seems that the imposed isolation because of potential Covid 19 infection was especially devastating for his grandfather.

But his justification for physician-assisted suicide as “the most holistic relief possible for people who are not immediately dying, but rather are done living” is chilling.

Unfortunately, that is an attitude seen all to often in medical professionals that has led to the expansion of some assisted suicide laws from terminal illness to non-terminal conditions like “completed life” and disabilities.

Both personally and professionally as a nurse, I know how difficult it can be on families when caring for a family member-especially an older relative-who says he or she wants to die.

But I also know that while we all can have sympathy for someone who says they want to die, the word “no” can be a powerful and loving response. The real answer is to help make living as good and meaningful as possible until death.

For example, I became the only caregiver when my elderly aunt developed diabetes and late-stage pancreatic cancer in 2000.

I went to doctor visits with her and went over the options with her. My aunt rejected chemo and radiation that had only a small chance of even slowing the cancer. She also refused hospice.

I offered to care for her in my home with my 15 year old daughter who also wanted to help. However my aunt felt it would cramp my daughter’s lifestyle so she decided to stay in her own home until she died.

So I helped her at home and purchased my first cell phone so that she could contact me at anytime. At that time, I was a single parent and worked full time nights in an ICU.

However, one day my aunt asked me about stopping her insulin to die faster. I told her how that could put her at risk for a heart attack or stroke from high blood sugar with no one there to help.

So she changed her mind and then even began opening up about her condition with others. She was stunned when people told her how inspiring she was and offered to help her in any way.

My aunt became happier than I had ever seen her.

Eventually, my aunt did accept hospice care at a facility she knew. I visited and called often. My aunt was physically comfortable and alert.

One day when my daughter and I went to visit her, we found that she had just died quietly in her sleep. The nurses had just stepped out to call me.

My daughter later wrote a beautiful essay about her first experience with death for her high school and received an A+. Her essay was later published on a nursing website.

In the end, causing or hastening death does not really solve anything but rather can be seen as an abandonment of the suffering person and a destroyer of the necessary trust we all must have in the ethics of our healthcare system.

We must never discriminate when it comes to helping anyone contemplating suicide.

.