Now Even Family Assisted Suicide?

Her obituary  stated that Tessa was 55 years old and the divorced mother of two adult children when she died on May 14, 2002 in San Francisco, California after a nearly four year fight with breast cancer . She had been a real estate agent and later worked as controller in her son’s company.

Her son was Gavin Newsom, who just won the race for California governor November 6, 2018.

However and just the day before, a November 5, 2018 article in The New Yorker titled “Gavin Newsom, the Next Head of the California Resistance gave a different version of Tessa’s death:

“Newsom’s sister, Hilary, said that when their mother had breast cancer, in her fifties, he was difficult to reach. ‘Gavin had trouble explaining to me how hard for him it was to be with her when she was dying, and I had trouble explaining to him how much I needed him,’ she said. ‘Back then, he seemed like the kind of guy who would never change a diaper.’

In May, 2002, his mother decided to end her life through assisted suicide. Newsom recalled, “’She left me a message, because I was too busy: ‘Hope you’re well. Next Wednesday will be the last day for me. Hope you can make it.’ I saved the cassette with the message on it, that’s how sick I am.’ He crossed his arms and jammed his hands into his armpits. ‘I have P.T.S.D., and this is bringing it all back,’ he said. ‘The night before we gave her the drugs, I cooked her dinner, hard-boiled eggs, and she told me, ‘Get out of politics.’ She was worried about the stress on me.’” (Emphasis added)

Sadly, a previous 2016 San Francisco Chronicle article entitled How Gavin Newsom’s family tragedy led to ammo-control initiative” quoted Gavin Newsom on an earlier suicide tragedy in his mother’s life:

“My grandfather committed suicide, but not before putting his daughter — my mother — and her twin against the fireplace and saying he was going to blow their brains out,” Newsom said.”(Emphasis added)

THE CRAZY HISTORY OF CALIFORNIA’S PHYSICIAN ASSISTED SUICIDE LAW

I admit I was puzzled when California governor Jerry Brown signed a new law in September, 2018   titled  “AB-282 Aiding, advising, or encouraging suicide: exemption from prosecution”. This amended the 2016 physician-assisted suicide law that “Every person who deliberately aids or advises, or encourages another to commit suicide is guilty of a felony” to “A person whose actions are compliant with the provision of the End of Life Option Act (physician-assisted suicide) shall not be prosecuted under this section.” (Emphasis added)

For many years, California was especially targeted by assisted suicide groups like Compassion and Choices, the former Hemlock Society, for the legalization of physician-assisted suicide because of its size and influence. By 2015, there had been 8 failed attempts for legalization of physician-assisted suicide.

However, the Brittany Maynard tragedy started a media frenzy around the 30-year-old newlywed with an aggressive brain tumor when she announced that  she and her family left California for Oregon to commit assisted suicide where it was legal and picked November 1, 2014 for her assisted suicide. Brittany Maynard also became a spokesperson to raise funds for Compassion and Choice’s campaign to legalize assisted suicide throughout the US. Her family continued to vigorously fight for a physician-assisted suicide law in California after her assisted suicide in Oregon.

Significantly and because of the Brittany Maynard tragedy, most mainstream media outlets have now dropped the term “physician-assisted suicide” in favor of more palatable terms like “death with dignity” and “physician aid in dying.”

Surprisingly though, another attempt to pass  the “End of Life Options Act” in California failed in the 2015 legislature-until a sudden extra and controversial legislative session was called to pass it. This new law was signed into law by Gov. Brown and took effect in June 2016.

However in May 2018 and after at least 111 assisted suicide deaths, a Superior Court judge overturned the law, ruling it unconstitutional because of  how it was improperly passed in the special legislative session.

Physician-assisted suicide was again illegal until a month later when California’s 4th District Court of Appeals granted the state’s request to reinstate physician assisted suicide while it considers the case.

Then, as I mentioned before, Gov. Brown signed the law to prevent prosecution of anyone involved in an assisted suicide, including family members.

CONCLUSION

According to Findlaw:

“If you’re not a licensed physician, then assisting someone with suicide is most definitely a crime. But in states that have enacted “right to die” or “death with dignity” laws, eligible patients may request lethal drugs and administer them on their own.” (Emphasis added)

But the reality is that very few cases of a friend or family member assisting a suicide are prosecuted and even then, the penalty is light or nonexistent.  So-called “safeguards” are useless.

There is no chance that Governor Newsom will be prosecuted or even investigated for allegedly assisting his mother’s death in 2002 (long before California legalized physician-assisted suicide). But the new California law that forbids prosecuting anyone involved in a physician-assisted suicide who “aids or advises, or encourages suicide” further reinforces the dangerous myth that assisting  suicide is a victimless and even loving act.

Should a Mental Health Exam be required before Physician-assisted Suicide?

When I read the October 27, 2018 MedPage news article titled “Assessing Competency in Aid-in-Dying Patients (aka physician-assisted Suicide)-Should a Competency Exam by an Outside Doctor be Required?”, I was struck by one case cited by psychiatrist Richard Martinez, MD, professor of psychiatry and law at the University of Colorado Denver who opposes mandatory mental health exams as “an invasion of privacy ” …”(t)o mandate an interaction with a stranger”. Dr. Martinez also contends that “Depression should not be an exclusionary decision.” (Emphasis added)

Dr. Martinez cited the case of a young man who had a severe spinal cord injury after a fall and was on a ventilator to breathe. Doctors took him off sedation and asked if he wanted to live. He said no so the ventilator was removed and he died.

Although Dr. Martinez acknowledged that “people who work with people with spinal cord injuries have argued for a waiting period” and that this was a very difficult case in bioethics, he still maintained that, in the end, the issue is really about choice. (Emphasis added)

When I read this, I remembered when “Aaron” (not his real name) was admitted to our intensive care unit with a severe spinal cord injury after a car accident. This was in the early 1970s, long before the “right to die”/physician-assisted suicide movement became known to the public.

I was there when the doctors told Aaron that his legs were permanently paralyzed and he would never walk again. Naturally, this 18 year old young man was devastated. It didn’t take long before he told us he wanted to die. We were not surprised by this  normal reaction and the doctors wanted to stabilize him medically before ordering a psychiatric consult if he persisted in wanting to die.

One day while I was bathing Aaron, I asked him if many people complimented him on his legs. Aaron was puzzled but answered “No”. Then I asked him if his legs were the most important part of him. After a pause, he smiled a little and said probably not.

Then I talked with him about what he would still be able to do once he was medically stable and what he might be able to do in the future with rehabilitation and medical advances. Aaron looked a little less forlorn. I reassured him that we doctors, nurses and his wonderful family would be there every step of the way and I predicted how much better he could feel with time and more information.

But what really made a difference was when Aaron’s parents told me how much he enjoyed poker. So one quiet night, I started a midnight poker game in Aaron’s ICU room with the nurses taking turns between caring for the patients and playing. It was great to see Aaron finally laughing and making fun of how badly we played.

Even though we were caught by an unexpected visit from administrators and I had to promise never to do this again, it was worth it. When I last visited Aaron after he left our unit, he was laughing and talking to his friends. And making plans.

Supporters of physician-assisted suicide claim that one of their strongest safeguards is, as the Oregon physician-assisted suicide law states, that “If, in the opinion of the attending physician or the consulting physician, a patient may be suffering from a psychiatric or psychological disorder or depression causing impaired judgment, either physician shall refer the patient for counseling.” (Emphasis added) But only the evaluation of a patient’s competence to make such a decision- not the diagnosable mental disorders that afflict more than 90 percent of people who die by suicide- is required .

However, now that supposed “safeguard” is being questioned by some psychiatrists in this new MedPage article reporting on a panel discussion during the 49th annual American Academy of Psychiatry and the Law (AAPL) meeting.

In the article, psychiatrists like Anna Glezer, MD, an associate professor of psychiatry and of ob/gyn at the University of California San Francisco (UCSF) who supports requiring a mental health exam stated:

“A psychiatrist can help identify potentially treatable psychiatric symptoms that may relieve elements of patient suffering, and detect family agreement versus family conflict that may require further intervention and counseling,”

and

‘”I’ve done a case where I didn’t say ‘This person meets the criteria or doesn’t,’ but [instead said] ‘These are my concerns,'” she said. In this case, the patient had lost her husband within the past year “and I thought grief might be compounding her decision-making capacity.” (Emphasis added)

Dr. Ariana Nesbit, a psychiatrist at the San Diego Central Jail says PAD (physician-assisted death aka physician-assisted suicide) is a complicated issue, stating that:

Our goal is often thought to be to prevent suicide, and we still conceptualize suicidal ideation as a symptom and pathological. As someone who just recently finished training in three very liberal states, I can tell you that at no point during my training was I ever taught how to figure out whether someone’s suicidal ideation, or their suicide attempt, was rational, so we don’t have any widely accepted method for determining this.” (Emphasis added)

Dr. Nesbit also cited a study titled “Prevalence of depression and anxiety in patients requesting physician’s aid in dying: cross sectional survey” that found 26% of patients requesting physician-assisted suicide did meet depressive disorder criteria but three of them were approved for physician-assisted suicide anyway. The authors concluded that “Although most terminally ill Oregonians who receive aid in dying do not have depressive disorders, the current practice of the Death with Dignity Act may fail to protect some patients whose choices are influenced by depression from receiving a prescription for a lethal drug.” (Emphasis added)

During a question and answer session, Annette Hanson, MD, adjunct assistant professor of psychiatry at the University of Maryland in Baltimore, questioned whether PAD itself was a good idea. “We’re not just consulting psychiatrists — we’re members of a profession,” she said. “We’re shapers of healthcare policy that will affect everyone in the country … including people who are institutionalized, including people who don’t have physical illnesses.” (Emphasis added)

Dr. Hanson told how she was contacted by a colleague who asked her how to do such an mental health exam on a patient seeking assisted suicide in Switzerland. because of an “irreversible neurological condition”.  Dr. Hanson said, “It turned out the ‘irreversible neurologic condition’ was schizophrenia”. Dr. Hanson concluded that “So the publicity surrounding the right-to-die movement is hurting our psychiatric patients.” (Emphasis added) She also added that “the American Psychiatric Association also considers [PAD] to be unethical, and re-emphasized that in [amicus] briefs to the Supreme Court.”

Another MD talked about self-care for doctors after making mental health exams for physician-assisted suicide, saying that she deliberately tried “not to find out what happened to the patient” but still often found out what happened to the patients she evaluated when she would see an announcement about a memorial service

CONCLUSION

I am glad that I became a nurse decades before state legalized physician-assisted suicide. Back then, I saw what happened with patients like Aaron when we didn’t have the assisted suicide “option”: Patients received a chance for the best life possible and we received a chance to show how much we cared.

 

 

 

 

Talking to Patients

As I have related before, back in the early 1970s when I was a new ICU nurse, I was teased for talking to comatose patients. I was even asked if I talked to my refrigerator. I explained that if hearing was truly the last sense to go, it made sense to talk to the patients and explain what we were doing just as we would for any other patient. The other nurses thought this was ridiculous-until “Mike”.

“Mike” was a 17-year old boy who was admitted to our intensive care unit in a deep coma with massive injuries caused by a terrible car crash. The neurosurgeon on duty pronounced, “He won’t live until morning and it’s a good thing, because he’d be a vegetable.” I was shocked that he said this in front of “Mike”!

But “Mike” didn’t die. I kept talking to him and eventually he could even move a finger on command. But he would not respond to the neurosurgeon, even with tests to see if he would move with pain stimuli.

Later on, when “Mike” was able to breathe on his own, he would even say “Hi” for me on command but it was only after I repeatedly begged that Mike finally said “Hi” to the neurosurgeon. The neurosurgeon called this a “miracle” but shortly after that, Mike was transferred to a nursing home. None of us ever expected to see him again.

However, about 2 years later, a handsome young man strode into our ICU and asked “Do you remember me?” It was Mike! He said he had driven 60 miles to tell us thanks for saving his life and we all dissolved in happy tears.

I told him that he wouldn’t remember this, but he would move and say “Hi” for us nurses but not for the neurosurgeon. Mike got very serious and said “I remember him calling me a vegetable and I wouldn’t move for him!

After that, every nurse on our unit was told to talk to every comatose patient as if he or she was totally awake and soon we found more patients who unexpectedly woke up or improved.

And no one ever teased me about talking to “comatose” patients again.

Throughout the decades since, I have talked to other patients who were considered comatose or otherwise unconscious, not just to patients with a major brain injury but also to patients approaching death and to patients sedated while on a ventilator for breathing. I’ve always considered this talking and explaining just basic respect for every patient. I was pleasantly surprised when I followed up with patients and families after they left our ICU and found many who remembered and told me how much this had helped them.

“OBSERVATIONS FROM ICU PATIENTS WE THOUGHT WERE ASLEEP, BUT WERE NOT”

So I was thrilled to see this title for a new Journal of the American Medical Association (JAMA) learning audio for doctors with stories from patients about what they experienced in an ICU while their treating doctors and nurses thought they were “asleep”.

In the audio, most of the patients were on sedation while on a ventilator and assumed unaware. One such woman related how she became so angry at her doctor’s attitude that she wanted to throw something at him and was frustrated when she couldn’t. Another man related how painful it was when the electrodes checking for his level of sedation were used without explanation or warning. Another complained about hearing nurses talking about her mom and dad poorly and their lack of empathy.

But there were also good stories about nurses or doctors taking the time to explain what was happening, talking as if the patient could hear everything and helping patients communicate without words. One doctor told about how his own father was in a hospital for an extended time and his dad remembered hearing the doctor talking about all the things he couldn’t do instead of what he could do. This doctor says that his father’s discouraging experience made him a better doctor.

The audiotape also explains how difficult it can be to not over- or under-medicate people, especially when it comes to pain, confusion and anxiety. The audiotape recommends that health care professionals try to avoid long acting drugs with potential side effects and continuous medication infusions and to use simple tools to assess delirium, confusion and anxiety.

The audiotape also recommends that health care professionals “treat patients like real persons”, “take the time to explain”, “be careful to assess level of awareness”, “realize that every action and word have real consequences” and that the “human element” is the most important.

CONCLUSION

Being in an ICU can be especially stressful for patients and their families and I hope this information is helpful. Medicine can do wonders today but it is the human connection that provides the best environment for healing for both patients and their families.

My Review of “Gosnell: The Trial of America’s Biggest Serial Killer”

I just saw the movie “Gosnell: The Trial of America’s Biggest Serial Killer” and was moved to tears even though I already knew much of the story about the notorious Philadelphia abortionist who ran an outrageously filthy clinic where he executed late-term babies who survived abortion by callously cutting their spinal cords. I also knew that some of the women died, suffered serious complications or contracted diseases from dirty instruments during the 30 years Dr. Kermit Gosnell ran his politically protected clinic.

This PG 13 movie scrupulously avoids sensationalism but through great acting, writing and accurate depictions of the clinic and Gosnell himself (actual pictures were shown at the end of the movie), the enormity of the evil cannot be ignored.

The movie starts much like an episode of “Law and Order” portraying a drug bust but then expands as police raid Gosnell’s abortion clinic for evidence of illegal prescription drug sales and find even greater problems. After the initial reluctance to prosecute by the District Attorney because the case involves abortion, a courageous assistant district attorney puts her job on the line to prosecute Gosnell.

The trial of Gosnell is riveting, especially when an expert witness abortionist describes how to correctly perform a late-term abortion that is unnervingly similar in callousness to Gosnell’s. The testimony of girls as young as 15 when they were trained by Dr. Gosnell to be his unlicensed assistants is also devastating as they describe an aborted baby swimming in a toilet or another struggling to keep breathing. The trial is very contentious but a stunning development late in the trial determines the result.

I highly recommend seeing this movie that even opened the eyes of people like Ann McElhinney who was neutral on abortion until she worked on this film.

CONCLUSION

Although one of the most shocking aspects of the Gosnell trial was his cutting the spinal cords of babies who survived abortion, Kermit Gosnell was not the first known abortionist to deliberately end the lives of babies who survived abortions.

In 1999, nurse Jill Stanek was shocked to discover a live baby boy left to die after an induced-labor abortion  and found this was a common practice in her hospital. Her courageous testimony led to the 2002 “Born-Alive Infants Protection Act” which extended legal protection to infants born alive after an abortion.

However, the lack of legal enforcement power in this Act led to the current “Born-Alive Abortion Survivors Protection Act that not only requires physicians and abortion facilities to afford “the same degree” of care to a baby born alive during an abortion that would apply “to any other child born alive at the same gestational age,” including transportation to a hospital, but also mandates fines and the possibility of imprisonment for medical professionals found to be noncompliant.

This bill was passed in the US House of Representatives this year and sent to the Senate where (because of procedural hurdles), it might need 60 votes to pass and be signed into law by President Trump.

Although it might be difficult to pass the Act now because of the political entrenchment of abortion supporters in the Senate, passing this law would provide at least one fitting endnote to the horrors of Dr. Kermit Gosnell’s clinic.

American Academy of Family Physicians Urges the American Medical Association to Drop Opposition to Physician-assisted Suicide

Compassion and Choices, the former Hemlock Society and now well-funded promoter of assisted suicide and other death “choices”, is celebrating the new resolution by the American Academy of Family Physicians (AAFP) to oppose the American Medical Association’s (AMA) long-standing opposition to assisted suicide.

The AFFP, the second largest component society of the AMA with over 131,000 members, just approved a new resolution adopting a position of  “engaged neutrality toward medical-aid-in-dying (aka physician-assisted suicide) as a personal end-of-life decision in the context of the physician-patient relationship.” (Emphasis added)

But as Dr. Rebecca Thoman, campaign manager for Doctors for Dignity for Compassion and Choices explained when the Massachusetts Medical Society adopted the same policy in 2017:

A “‘neutral engagement’ position is even better than a simply neutral position. It means if Massachusetts enacts a medical aid-in-dying law, the medical society will offer education and guidance to physicians who want to incorporate medical aid in dying into their practices.” (Emphasis added)

Now, yet another physician-assisted suicide bill is expected to be introduced next year in the Massachusetts legislature.

The AAFP resolution also stated that:

“By supporting the AMA’s opposition to medical aid in dying, some members feel the AAFP is telling them that they are unethical

and that

“the American Academy of Family Physicians reject(s) the use of the phrase ‘assisted suicide’ or ‘physician-assisted suicide’ in formal statements or documents and direct(s) the AAFP’s American Medical Association (AMA) delegation to promote the same in the AMA House of Delegates.” (Emphasis added)

CONCLUSION

In 1994, Oregon became the first state to pass a physician-assisted suicide law. This came after the Oregon Medical Association changed its position from opposition to neutrality. 21 years later and after multiple failed attempts, the California state legislature approved a physician-assisted suicide law after the California Medical Association changed its opposition to neutrality.

The unfortunate message sent-and received- was that if doctors themselves don’t strongly oppose physician-assisted suicide laws, why should the public?

Still, it was a surprise that in June 2018, the American Medical Association House of Delegates rejected the AMA’s Council on Ethical and Judicial Affairs (CEJA) strong report recommending that the AMA continue its long standing policy opposing physician assisted suicide. Instead the delegates “voted 314-243 to refer the matter back to the trustees for further deliberation”.

With the crucial help of a supportive media, Compassion and Choices started this momentum towards acceptance of physician-assisted suicide and other death choices like VSED (voluntary stopping of eating and drinking), terminal sedation and withdrawal of even spoon-feeding, affecting not just doctors but also nurses and other health care professionals and institutions.

In addition, Compassion and Choices also opposes conscience rights, even stating that  the new Federal Conscience and Religious Freedom Division:

“is not about freedom; it’s about denying patient autonomy. Under their proposed rules, providers are encouraged to impose their own religious beliefs on their patients and withhold vital information about treatment options from their patients — up to, and including, the option of medical aid in dying. And your federal tax dollars will be used to protect physicians who make the unconscionable decision to willfully withhold crucial information regarding their care from a patient and abandon them when they are most vulnerable.” (Emphasis added)

However, here are a few ways any of us can help turn around this dire situation:

When the most basic medical ethic of not killing patients or helping them to kill themselves can be discarded in favor of “choice” or “quality of life”,  none of us of us can afford to be neutral- or silent-on this life or death issue.

Welcome!

Welcome to my blog!

I hope you will find it worthwhile and enlightening. These are my own personal observations and I encourage you to share yours.

Links to sources are underlined. Just click to see the referenced citation.

I also have an archive of older articles, etc. from Voices magazine at my other blog “Nancy Valko, RN ALNC”.

I am glad you came!

Nancy Valko, RN ALNC

No Suicide Discrimination!

When I was asked by my late daughter Marie’s best friend to join her on a family and friends fundraising walk for suicide prevention last Sunday, I hesitated.

I was in the process of reading yet another disturbing article about assisted suicide, this time a Journal of Clinical Psychiatry article titled “Working with Decisionally Capable Patients Who Are Determined to End Their Own Lives”  and I found it outrageous that the suicide prevention groups I know exclude potential physician-assisted suicide victims.

As a nurse, I have personally and professionally cared for many suicidal people over decades including some who were terminally ill. To my knowledge, none of these people went on to die by suicide except one-my own daughter.

Almost nine years ago, my 30 year old daughter Marie died by suicide using an assisted suicide technique she found after searching suicide and assisted suicide websites and reading assisted suicide supporter Derek Humphry’s book “Final Exit”.

Marie was a wonderful woman who achieved a degree in engineering despite struggling off and on with substance abuse and thoughts of suicide for 16 years. She was in an outpatient behavioral health program at the time of her suicide. Her suicide was my worst fear and it devastated all of us in the family as well as her friends. Two people close to Marie also became suicidal after her death but were fortunately saved.

For years before and after Marie’s death, I have written and spoken to groups around the country about the legal and ethical problems with assisted suicide as well as suicide contagion  and media reporting guidelines for suicide.

So it was with mixed feelings that I participated in the suicide prevention walk but now I am glad I did.

“WORKING WITH DECISIONALLY CAPABLE PATIENTS WHO ARE DETERMINED TO END THEIR OWN LIVES”

I finally finished reading this article after the walk and found that while the authors of this Journal of Clinical Psychiatry article insist that they are only discussing “decisionally capable” people with “advanced medical illness”, they write:

The 24% increase in US suicide rates from 1999 to 2014 has led to greater efforts to identify, prevent, and intervene in situations associated with suicidality. While the desire to kill oneself is not synonymous with a mental illness, 80%–90% of completed suicides are associated with a mental disorder, most commonly depression. Understandably, psychiatrists and other clinicians face strong moral, cultural, and professional pressures to do everything possible to avert suicide. Hidden within these statistics are unknown numbers of individuals determined to end their lives, often in the context of a life-limiting physical illness, who have no mental disorder or who, despite having a mental disorder, were nevertheless seemingly rational and decisionally capable and in whom the mental disorder did not seem to influence the desire to hasten death.”

Tragically, the authors also state:

“In reviewing the either sparse or dated literature in this field, surveys from the United States and Canada support that most psychiatrists believe that PAD (physician aid in dying, a euphemism for assisted suicide) should be legal and is ethical in some cases and that they might want the option for themselves.”

And

“Although we see ‘assisted death’ as an option of last resort, we instead ask whether on certain occasions psychiatrists might appropriately not seek to prevent selected decisionally capable individuals from ending their own lives.” (All emphasis added)

This flies in the face of long-standing professional suicide prevention and treatment principles.

Notably, the article ends with an addendum, the 2017 Statement of the American Association of Suicidology (AAS): “Suicide is not the same as ‘Physician Aid in Dying’

That concludes:

“In general, suicide and physician aid in dying are conceptually, medically, and legally different phenomena, with an undetermined amount of overlap between these two categories” but “Such deaths should not be considered to be cases of suicide and are therefore a matter outside the central focus of the AAS.” (Emphasis added)

WHY I AM GLAD I WENT ON THE SUICIDE PREVENTION WALK

The Sunday walk was sponsored by the American Foundation for Suicide Prevention (AFSP), a group that I discovered states it is trying to “Develop an updated AFSP policy position on assisted death (other common terms include physician assisted suicide or Death with Dignity Laws)

The next day, I was able to contact a policy person at their Washington, DC office and, unlike other suicide prevention group representatives I have contacted in the past, I found this woman surprisingly interested and receptive to the idea that we should not discriminate against certain people when it comes to suicide prevention and treatment. She even asked for my contact information.

Of course, the AFSP may decide to exclude potential assisted suicide victims like other organizations have done but at least I tried and that’s the best tribute I can give to my daughter now.

 

The Power of Memories

Back in the 1990s when I was a home health/hospice nurse, one of my most memorable patients was a woman I will call “Georgia”.

When I was assigned to Georgia, I was told that she had terminal lung cancer but did not feel well enough to get to her doctor visits and the doctor wanted us to find out what she needed since she did not want to be hospitalized.

I was surprised to find Georgia, her husband and 2 dogs were living in a small camper attached to a pickup truck on the gravel banks of a small river about 50 miles from St. Louis.

Georgia was a dignified and very thin older woman with a look of profound sadness in her eyes. She was getting oxygen for her shortness of breath and effective pain medication but her main complaint was unremitting nausea. Her husband was friendly and anxious to know what he could do to help his wife. Both knew her diagnosis was terminal.

Because of years working with cancer patients, I suggested a new anti-nausea regimen that Georgia’s doctor had never heard about. He checked with a pharmacist and we started the regimen. It worked well.

With her symptoms now under control, Georgia finally spoke about her fears for herself and her husband. I was able to reassure her about measures to make her comfortable and other end of life concerns but she still seemed sad.

I also found out that they moved to the little camper on the river after their home was burned to the ground. That loss was devastating for both of them but they were grateful to be able to rescue many family photos.

Then I asked if she would like to show me some of the rescued pictures and she was delighted.

Each picture had a story and Georgia was happily animated as we went through several of them at each visit. Slowly, a picture emerged of a life well-lived with family and a generous spirit at the heart of everything.

As the weeks went by, I didn’t know if we would get to the end of the pictures as she became weaker and weaker but I saw her spirits steadily improve while the sadness receded.

Georgia died late one night and her husband called to tell me that her death was peaceful for both of them. He thanked me for my help but I felt I should be thanking him and Georgia for the lesson they taught me about the beauty and importance of memories accumulated over a lifetime and remembered with love.

Today,  life review and reminiscence therapy  can be found in many hospices and nursing homes.

“REMINISCENCE THERAPY” FOR PEOPLE WITH DEMENTIA

Last week the Wall Street Journal had an article titled “To Help Alzheimer’s Patients, a Care Center Re-creates the 1950s” about a California adult day care center for people with dementia.

This first of its kind center recreates a town square representing the time period from 1953 to 1961 when most of the patients were in the prime of their life.

The rationale is that dementia makes it hard for people to remember the recent past whereas older memories are preserved better for a longer time, “especially memories from childhood and early adulthood”, according to Professor Dorthe Bertsen who heads the Center on Autobiographical Memory Research in Denmark.

According to one small study done in Europe, most participants showed no improvement on cognitive tests but there seemed to be improvement in their mood and quality of life.

In one section of the article about trying reminiscence therapy at home, Mindy Baker, director of education at George G. Glenner Alzheimer’s Family Centers, suggests going through old photos, doing a favorite activity, and telling stories to trigger memories with the family member.

The goal is to facilitate memories rather than challenging inaccuracies  because a person with dementia might get upset if their memories don’t align with the facts.

CONCLUSION

But we don’t necessarily need a fancy facility like the 1950s-inspired day care center to help people with dementia.

Over the years, I have helped care for many patients, friends and family with dementia in their homes, in hospitals or nursing homes. I saw people who hadn’t spoken for a long time light up and join me in singing songs like “You are My Sunshine”.

For my friend Dr. Anne who had dementia, I would tell stories about her achievements and show her articles that she had written and she would grin the rest of our visit.

I learned these techniques when I cared for my mother when she developed terminal cancer and Alzheimer’s in the 1980s and I saw her memory slowly fading away.

Mom finally could not remember my name or my 2 year old daughter’s but she knew we were people she liked. We would all sit together and watch Sesame Street episodes or old movies holding hands and I saw how happy that made my mother even though she could no longer speak.

Most moving to me was that almost to the very end of her life, she was still trying to load the dishwasher and making the sign of the cross. Faith and family were the two things most important to her and this was her way of showing and remembering  this.

Memories are so important to all of us and especially at the end of our lives when they may be all we have left.

Personally, I’m saving up some good ones myself.

 

How the New “Palliative Care and Hospice Education and Training Act” Could Threaten Conscience Rights.

Two weeks ago, I wrote about the new Senate Bill 693 titled the “Palliative Care and Hospice Education and Training Act” (now referred to the Committee on Health, Education, Labor, and Pensions) and warned about the current and future involvement of Compassion and Choices (the former Hemlock Society now pushing for legalizing physician-assisted suicide throughout the US) in “end of life” education for healthcare professionals. But Compassion and Choices is not the only organization supporting practices that, until the last few decades, were universally condemned.  For example, last year the American Nurses Association took a position approving VSED (voluntary stopping of eating and drinking) to hasten death  and that those decisions “will be honored” by nurses.

In addition, this year the American Medical Association House of Delegates rejected the AMA’s Council on Ethical and Judicial Affairs (CEJA) report recommending that the AMA continue its long standing policy opposing physician assisted suicide. Instead the delegates “voted 314-243 to refer the matter back to the trustees for further deliberation”.

Unfortunately, Senate Bill 693 does not contain any requirement of conscience rights protection in allocating grants to groups proposing to expand hospice and palliative care education programs for healthcare professionals.

BIOETHICS AND CONSCIENCE RIGHTS

According to Dr. Edmund Pellegrino, writing on the origin and evolution of ethics in 1999 for the Kennedy Institute of Ethics :

“In the 1960s and 1970s, building upon liberal theory and procedural justice, much of the discourse of medical ethics went through a dramatic shift and largely reconfigured itself into bioethics.”

Instead of the old Hippocratic Oath principles requiring high ethical and moral standards for doctors including prohibitions against actions such as assisting a suicide, bioethics has evolved into essentially four principles: Respect for autonomy (the patient’s right to choose or refuse treatment), Beneficence (acting in the best interest of the patient), Non-maleficence (not causing harm) and Justice (fairness, equality and distributive justice “so that the needs of the entire population are taken into account.” ) which often compete in actual medical situations.

Unfortunately, the principles of the new bioethics do not address the issue of conscience, which has now become a contentious issue in bioethics.

For example at the 2018 AMA meeting where the House of Delegates voted not to accept the Committee on Ethical and Judicial Affairs report’s recommendation to continue the AMA’s opposition to physician-assisted suicide, one doctor responded:

“We feel the AMA abandoned all physicians who, through conscience beliefs, want to support patients with this in states where it’s legal,” said Lynn Parry, MD, a Colorado delegate, on behalf of the PacWest group, which includes AMA delegates from six Western states that have legalized physician aid-in-dying. “I personally think we need to protect physicians in those states and would ask for referral back.” (Emphasis added)

Dr. Ezekiel J Emanuel, MD, PhD, an influential physician who was one of the architects of Obama care and a formerly strong opponent of assisted suicide, wrote in a 2017 New England Journal of Medicine article “Physicians, Not Conscripts — Conscientious Objection in Health Care” that:

“ Conscientious  objection  still  requires  conveying  accurate  information  and  providing  timely  referrals to ensure patients receive care.

……

“Health care professionals who are unwilling to accept these limits (on conscience rights) have two choices: select an area of medicine, such as radiology, that will not put them in situations that conflict with their personal morality or, if there is no such area, leave the profession.

……

“Laws may allow physicians, nurses, pharmacists, and other health care workers to deny patients treatment or to refuse to care for particular populations, but professional medical associations should insist that doing so is unethical.” (All emphasis added)

CONCLUSION

When it comes to issues like withdrawing feeding tubes from so-called “vegetative”  patients, terminal sedation to hasten death and physician-assisted suicide, this last point from Dr. Emanuel leaves those of us physicians and nurses who refuse to kill our patients or help them kill themselves with few options to continue in our professions.

Years ago when I was threatened with firing for refusing to increase a morphine drip on a comatose man who was removed from a ventilator but still continued breathing, I was told that this was acceptable “end of life” care to “prevent pain”.  I know one nurse who was fired for refusing to give morphine every hour to a dying patient in no distress and barely breathing because the family demanded it. I’ve heard from families who were automatically offered hospice instead of rehab when their loved one was elderly and injured.

When such outrages occur even outside of formal hospice or palliative care programs and considered “normal” end of life care, ethical healthcare professionals find no recourse through their professional organizations or the law to protect their patients from premature death.

Thus when healthcare legislation like SB 693 promotes giving grants to organizations who support or might support VSED, assisted suicide, etc. to train healthcare professionals in hospice and palliative care without clear conscience rights protection, both healthcare professionals and the public are at risk of a normalized culture of premature death.

 

Two Wonderful Stories: A Prenatal Misdiagnosis; Man Saves Grandchild from Abortion

A PRENATAL MISDIAGNOSIS

 Drew and Adriann Corpstein were devastated when they were told at 20 weeks that their unborn baby had a lethal brain abnormality called semilobar holoprosencephaly, an abnormality of brain development in which the brain doesn’t properly divide into right and left hemispheres. They were told that the baby might only live a few days as a “vegetable” and encouraged the couple to consider a late-term abortion.

Instead they decided to trust God, deliver their baby and love him for whatever time they had with him.

Baby Matthew was born on July 29 but just the next day, the doctor gave them the stunning news that Baby Matthew did NOT have the lethal brain condition but rather hydrocephalus-an excess of fluid around the brain that can be treated with a shunt. Baby Matthew could then survive and even have the chance of a fully functioning life! (Click here to see a beautiful video of Baby Matthew and his parents.)

Personally, I have seen more than one prenatal diagnosis turn out to be wrong.

Of course, prenatal testing is not always wrong but there is cause for concern about the number of unborn babies misdiagnosed, especially with some newer screening blood tests. (Please see my February blog A Dark Side of Prenatal Testing” )

But there are alternatives to abortion when the prenatal diagnosis turns out to be accurate.

As Baby Matthew’s parents mentioned in the article, they prepared for end of life care for him when he was expected to die shortly after birth and there are often such hospices available in many areas.

There are also organizations like Prenatal Partners for Life  and Be Not Afraid that provide support, information, resources and encouragement for carrying to term with an adverse prenatal diagnosis.

These organizations’ websites also have parents’ stories of their children with a range of prenatal diagnoses ranging from lethal ones like anencephaly to disabilities like Down Syndrome or Spina Bifida.

MAN SAVES GRANDCHILD FROM ABORTION

This month, I read an uplifting story that personally resonated with me.

With a heavy heart because his wife was “dead-set” on abortion for their 16 year old daughter, “Brian” took his daughter to A Woman’s Pregnancy Center  in Tallahassee, Florida. But when his daughter went in to speak to a counselor, “Brian” was surprised when a male counselor wanted to speak with him.

“Brian” didn’t know that when a client comes into A Women’s Pregnancy Center (a crisis pregnancy center) with another person, the staff determines the other person’s relationship to the client and invites the support person to speak with a different counselor about their thoughts and feelings on the client’s situation.

“Brian” told the counselor that his wife wanted their daughter to have an abortion and he wanted their daughter to be safe. But when the counselor told him, in effect, that ‘You are made in the image of God for a reason and a purpose. You are Eliza’s father AND the grandfather of her child. He is the Creator of the Universe and has given you this role. Trust Him, and He will equip you to take care of your family’, “Brian” changed.

He went to his daughter and said “Baby girl, we’ve got this.” He told his daughter to look at him and said “I’m going to take care of you.” His daughter burst into tears of relief.

Sherri Daume, director of client services at the clinic, explained about ministering to a support person when a woman is considering abortion:

“The support person is often as confused and scared for their loved one as the client herself. They might have a grandchild or niece or nephew in the picture. They usually want to help the client but don’t know how. We equip the support person with information and resources that help them support their loved one in a relevant way.”

I totally agree with this and I have personally seen the effects of such support.

When my oldest daughter Marie became pregnant at 18, her friends were “pro-choice” on abortion. But, as she told me, she knew too much about unborn babies and abortion from growing up in a pro-life family. For Marie, abortion was out of the question.

Marie was surprised but pleased when she told her “pro-choice” friends that she would not have an abortion and they enthusiastically supported her decision. Many even offered to help. However, they did not support her anguished but brave decision to release her baby for adoption.

I told her that I would support her if she decided to raise her baby herself but she decided that her and the father’s problems would keep her baby from having the best life possible.

That decision was hard for our family to accept but our beautiful oldest granddaughter turned 20 this week with the loving and proud parents who adopted her after birth. And despite my daughter’s untimely death almost 9 years ago, we are so grateful that our family will also be able to celebrate this milestone with her and the family who adopted her.

 

 

Beware the New “Palliative Care and Hospice Education and Training Act”

Right now, there is a Senate Bill 693 titled “The Palliative Care and Hospice Education and Training Act” to authorize more and better training in palliative and hospice care. Although a provision (SEC. 6. Clarification) was recently added to explicitly forbid federal funding for any health care furnished for the purpose of causing or assisting the death of any individual by assisted suicide, euthanasia or mercy killing, many of us have serious concerns. (The similar House Bill 1676 has already passed and sent to the Senate.)

As an RN with decades of nursing experience in hospice, oncology (cancer) and critical care, I have been involved with many end-of-life situations. I am an enthusiastic supporter of ethical palliative and hospice care which is indeed wonderful for patients of any age and their families.

Unfortunately, there is a growing trend towards calling unethical practices “palliative” or “hospice” care.

For example and just a few years ago in a Catholic hospital, I saw a nurse/friend’s life deliberately ended due to so-called palliative and hospice care labeled “comfort care.” She had recently suffered a serious brain injury and was declared hopeless after a couple of weeks. The family was strongly pushed to switch to “comfort care”.  She was taken off a ventilator, had her feeding tube removed (against her adult son’s wishes), and continued to receive the sedation medications used when she was on the ventilator, even receiving an increase in those medications when she continued to breathe on her own. Despite my friend’s son insisting that he wanted the feeding tube replaced and that he wanted to eventually care for his mother at home whatever her level of functioning was, he was told to wait until a doctor could order the feeding tube replaced. The hospital waited until he went home to sleep, transferred her to the hospice unit without his permission and she was dead by morning.

Unfortunately, similar stories have become increasingly more common since the 1970s when the Euthanasia Society of America changed its name to the Society for the Right to Die and promoted the new “living wills”. Now we have well-funded groups like Compassion and Choices (the former Hemlock Society) not only promoting physician-assisted suicide but also trying to change medical ethics from never deliberately causing or hastening death to merely a “choice” about when and how to die.

Two years ago in my blog “Is Compassion and Choices aiming to become the “Planned Parenthood” of Euthanasia?, I warned about the current and future involvement of Compassion and Choices in “end of life” education.

Here are some excerpts:

With over $22 million in 2015 net assets,  a 4 star rating from Charity Navigator, enthusiastic media coverage and a new  Federal Policy Agenda for 2016 and Beyond” , Compassion and Choices increasingly appears to be following in the 4 star, politically and media supported, $1.3 billion dollar revenue ($528 million in government taxpayer funding) steps of the Planned Parenthood Federation of America.

While Compassion and Choices claims that it just “works to improve care and expand choice at the end of life”, it also admits that “We employ  educational training programs, media outreach and online and print publications to change healthcare practice, inform policy-makers, influence public opinion and empower individuals.” (Emphasis added)

……….

THE PALLIATIVE AND HOSPICE CONNECTION

Compassion and Choices has worked for decades not only to legalize physician-assisted suicide in every state but also to normalize and integrate physician-assisted suicide into medical practice and reaches out to established medical groups like the American Academy of Palliative and Hospice Medicine (AAPHM.

………..

Now, Compassion & Choices’ website has a video presentation based on this article  titled  “Understand the Clinical Practice of Aid in Dying” for doctors and other clinicians. The presentation even offers continuing medical education credits.

This would not be possible if the AAPHM had not changed its position on assisted suicide from opposition to “studied neutrality”, a position that the American Medical Association itself is now considering.

………….

Compassion and Choices also supports two other “legal” options for assisted suicide in states that haven’t passed physician-assisted suicide laws. One is “voluntary stopping of eating and drinking (VSED)” and the other is “palliative sedation-Sometimes called terminal sedation”. Significantly, the recommendations include the admission that “VSED includes pain and symptom management” and “Palliative sedation must be medically managed by a healthcare provider”. Thus the need to influence and train hospice and palliative care providers.

………..

WHERE THE MONEY AND POWER IS

Compassion and Choices now has its “Federal Policy Agenda / 2016 & Beyond”.

The priorities on its agenda include:

Establish federal payment for palliative care consultations provided by trained palliative care professionals who will advocate for and support the values and choices of the patient….”  (Emphasis added)

Also included are

Professional Education and Development” training programs for doctors and other providers “in discussing terminal prognoses and death” and  “Policies and Payment Systems” to change medical policies and payments to a “a value-based healthcare payment system” that will “(e)ncourage Congress to direct CMS (the Centers for Medicare and Medicaid Services) and other federal agencies” to withhold   “appropriations or other funds”  for treatment that was “provided but (deemed) unwanted”.

This last provision reinforces the fear many healthcare providers already have that, if in doubt, it is safer not to treat a person rather than treat him or her in hope of a good result because of potential lawsuits or reimbursement problems.

………

In the meantime, if the Compassion and Choices federal policy agenda is successful, they stand to benefit from a potential windfall of government taxpayer funding to provide their currently  “free consultation, planning resources, referrals and guidance”.

CONCLUSION

I have already contacted my state senator to express my concerns and urged him to vote “no” on SB 693.

As Nancy Elliot, chair of the Euthanasia Prevention Council USA, ended in a great letter to Senators opposing the Palliative Care and Hospice Education and Training  Act :

“instead of creating a rival form of palliative care…Wouldn’t it be better to educate/update all physicians and nurses about pain and symptom management?”