When Palliative Care goes Horribly Wrong

As I have written before,   I was almost fired for refusing to increase a morphine drip “until he stops breathing” on a patient who continued to breathe after his ventilator was removed. The doctors mistakenly presumed he had a massive stroke and thus was irreparably brain-damaged. I was told at that time that giving and increasing the morphine even though the patient showed no discomfort was merely “comfort care” that would “prevent pain”. I knew it was euthanasia.

I remembered this terrible incident when I read the April 1, 2019 Federalist magazine article “This Belgian Nurse Watched Euthanasia Turn Pain Management Into A Death Prescription”

Belgium has had legalized euthanasia for many years, including organ donation euthanasia and now even minors and psychiatric patients. But Sophie Druenne, a palliative care nurse, reached her breaking point when she had to call a doctor had to come back to give another lethal injection when the patient didn’t die from the first injection. Sophie caught herself laughing at the absurdity of the situation at first but then realized the horror of the situation and began to question Belgium’s so-called social experiment with euthanasia.

What changed Sophie’s opinion was working in Belgium’s integrated palliative care (IPC) system. Palliative care is “medical aid that treats symptoms of a typically serious disease rather than the disease itself, which sometimes cannot be treated or not easily.” However Belgium’s euthanasia framework now includes integrated palliative care in the framework.

As the article states, palliative care used to be defined by the anti-euthanasia beliefs of its founder, Dame Cicely Saunders, a British nurse who developed holistic care for the dying in the 1940s. Dame Saunders believed that “that a patient’s request for euthanasia represented a failure to adequately care for the patient’s spiritual, emotional, and social needs.”

Although Belgium tried to reconcile Dame Cicely Saunders’ standard with its euthanasia laws, Sophie observed that the guiding intention to relieve suffering changed from “first, do no harm” to “first, relieve suffering”. This allowed euthanasia to become an “easy” solution that could effectively nullify even patient consent.

Sophie finally left Belgium to take a position in Paris at a hospital where terminally ill patients are treated with traditional palliative care

THE SITUATION IN THE US

Recently I was giving a talk on assisted suicide/euthanasia when I noticed that a woman in the audience was visibly upset. After I finished, I went over to her to ask if I said something that upset her. She responded that she was a nurse for 30 years and, when I related the story about the morphine overdose I refused to give, she said that she suddenly realized the truth of what was happening in her hospital. She started to cry while I held her hand. She was devastated just like the Belgian nurse.

Palliative care is a wonderful holistic approach to evaluating the patient’s needs beyond just the physical but it must not include causing death.

Unfortunately, a recent Delaware assisted suicide bill  actually tried to define assisted suicide as a palliative care option.

Currently, hospice/palliative care is held up as a good way to combat assisted suicide. However,  Compassion and Choices touts  that “(a) growing number of national and state medical organizations have endorsed or adopted a neutral position regarding medical aid in dying (physician-assisted suicide) as an end-of-life option for mentally capable, terminally ill adults.”

Barbara Coombs Lee, CEO of Compassion and Choices even issued a 2017 “Call to the Palliative Care Community for a Patient-Centered Response to Medical Aid in Dying (aka physician-assisted suicide)” stating that assisted suicide actually “could improve the image and acceptance of palliative care” by taking a position of  “engaged neutrality” that “indicates that it is a professional organization’s obligation to provide its members with the clinical guidelines, information, and tools they need if they choose to support their patients’ requests” for assisted suicide.” (Emphasis added)

Not surprisingly, Compassion and Choices had supported the 2016  “The Palliative Care and Hospice Education and Training Act” (reintroduced this year as HR 647) that would provide millions of dollars in grants or contracts to “increase the number of permanent faculty in palliative care at accredited allopathic and osteopathic medical schools, nursing schools, social work schools, and other programs, including physician assistant education programs, to promote education and research in palliative care and hospice, and to support the development of faculty careers in academic palliative medicine.” (Emphasis added)

Fortunately, a provision was added to forbid federal assistance to any health care item or service causing or assisting death such as assisted suicide. Since then, the Compassion and Choices website has been silent on the Act.

CONCLUSION

Over the years, the public has been told that assisted suicide is a humane answer to emotional and physical suffering at the end of life. But if doctors, nurses and their professional organizations come to agree with this, we all will lose the protection of truly ethical healthcare that rejects causing death as a solution. We must be able to trust that our healthcare system will  give us the care we need and deserve, especially at the end of our lives.

We cannot become like Belgium.

Assisted Suicide and “Failure of Unconsciousness”

As a nurse, I have seen patients assumed to be unconscious while in a coma or sedated on a ventilator later tell me about some memories and feelings during that time. This is why I always cared for such patients as if they were awake.

Now in a stunning February, 2019 Association of Anaesthetists article titled “Legal and ethical implications of defining an optimum means of achieving unconsciousness in assisted dying”, a group of international doctors explore the difficulty in ensuring unconsciousness to death in lethal injection capital punishment and assisted suicide/euthanasia. (Note: Since the authors are international, some quoted terms here are spelled differently than here in the US)

Believing that “A decision by a society to sanction assisted dying in any form should logically go hand‐in‐hand with defining the acceptable method(s)”, the authors reviewed the methods commonly used and contrast these with an analysis of capital punishment in the US. They “expected that, since a common humane aim is to achieve unconsciousness at the point of death, which then occurs rapidly without pain or distress, there might be a single technique being used.”

They were wrong.

They found that with self-administered lethal overdoses “with death resulting slowly from asphyxia due to cardiorespiratory (heartbeat and breathing) depression”, helium self-suffocation and the Dutch lethal injection that resembles US capital punishment, “there appears to be a relatively high incidence of vomiting (up to 10%), prolongation of death (up to 7 days), and re‐awakening from coma (up to 4%), constituting failure of unconsciousness.” (Emphasis added)

The authors take no position on assisted suicide and state their intention to “dispassionately examine whether the methods used to induce unconsciousness at the point of death in assisted dying achieve their objective”. With many of the authors being anesthesiologists themselves, they used the most recent research into “accidental awareness” during anesthesia to try to find an “optimal means” that could better achieve unconsciousness.

ASSISTED SUICIDE AND CAPITAL PUNISHMENT

It was difficult for the authors to find discussion of actual methods to cause death but the Dutch have published guidelines for both “passive participation” where the doctor prescribes a high-dose barbiturate and “active participation where the doctor administers a high dose of IV anesthetic and a neuromuscular (paralyzing) drug.

Notably, the authors found that a lethal injection is recommended by the Dutch when self-ingestion death fails to occur within 2 hours and that this is “an explicit recognition” that self-ingestion can fail.

The Dutch lethal injection resembles (except for the use of potassium to stop the heart) the US method of capital punishment so the authors looked at the US method of lethal injection capital punishment because it is “designed to be ‘humane’ and bears technical similarities” to lethal injection assisted suicide/euthanasia. The US lethal injection protocols also includes technical aspects such as drugs, dosage and monitoring of the patient.

However, as the authors note, “prisoners have been reported to be clearly awake and in distress during some executions”. Two death row prisoners even petitioned the US Supreme Court to consider a requirement for a physician to confirm unconsciousness before the lethal drugs are given. They argued that they “might be awake but paralysed at the point of death, making the method a ‘cruel or inhumane punishment’ which violated the US constitution’s Eighth Amendment”. (Emphasis added) The authors note that this “situation has clear parallels with the problem of ‘accidental awareness during general anesthesia’, where the patient awakens unnoticed and paralysed during surgery, which is known to be a potent cause of distress.” However, the US Supreme Court rejected this argument in 2008, “concluding that the anaesthetic doses used reliably achieved unconsciousness without any need to check that this was the case.” (All emphasis added)

As the authors state, “We now know that the Court was wrong.” (Emphasis added)

DO US ASSISTED SUICIDE LAWS GUARANTEE A PEACEFUL DEATH?

The US assisted suicide laws mandate secrecy in reporting requirements and the little yearly data available about complications is self-reported by the doctors who are not required to be with the person during the process or even afterwards to pronounce death.

However, the authors were able to use data from the Dutch protocols, and other similar methods used elsewhere and state that after taking the lethal overdose:

“patients usually lose consciousness within 5 min. However, death takes considerably longer. Although cardiopulmonary collapse occurs within 90 min in two‐thirds of cases, in a third of cases death can take up to 30 h(ours) 3133. Other complications include difficulty in swallowing the prescribed dose (in up to 9%) and vomiting thereafter (in up to 10%), both of which prevent suitable dosing, and re‐emergence from coma (in up to 2%). Each of these potentially constitutes a failure to achieve unconsciousness, with its own psychological consequences, and it would seem important explicitly to acknowledge this in suitable consent processes.” (Emphasis added

The authors also note:

“that the incidence of ‘failure of unconsciousness’ is approximately 190 times higher when it is intended that the patient is unconscious at the time of death 3133, as when it is intended they later awaken and recover after surgery (when accidental awareness is approximately 1:19,000)21, 22. (Emphasis added)

CAN TECHNOLOGY ENSURE UNCONSCIOUSNESS?

The authors discuss the limitations of just using EEGs (brain wave tests) and the isolated forearm technique (IFT) where the person can move their single, non-paralysed forearm to signal their awareness.

Instead the authors state:

“Recent lessons from anaesthesia lead us to conclude that, if we wish better to ensure unconsciousness at the point of death… then this can be achieved using: (1) continuous drug infusions at very high concentrations; (2) concomitant EEG‐based brain function monitoring, targeted to the very low, burst suppression or isoelectric values; and (3) clinical confirmation of unconsciousness by lack of response to command or to painful/arousing stimuli (and this last could include an IFT). Alternative methods that do not include these elements entail a higher, possibly unacceptable, risk of remaining conscious and so, by definition, are suboptimal.” (Emphasis added)

However, the authors acknowledge practical problems with this protocol such as the technical requirements requiring the involvement of trained practitioners like anesthetists.

And the “optimum method” for ensuring unconsciousness is so medicalized that:

“Society or individuals might prefer to retain a choice for alternative methods, even if these are suboptimal and carry a greater risk of consciousness at the point of death 54. If so, then legal frameworks and consent processes should explicitly acknowledge this choice. ” (Emphasis added)

CONCLUSION

The assisted suicide legalization movement led by Compassion and Choices portrays assisted suicide as an easy and dignified death, even one that can be a cause of celebration.

Polls about assisted suicide like the latest Gallup poll find 65% say “yes” when asked “When a person has a disease that cannot be cured and is living is severe pain, do you think doctors should or should not be allowed by law to assist the patient to commit suicide if the patient requests it?” even though assisted suicide laws don’t mention pain and state that the person must be terminally ill and expected to die within 6 months.

But how many people, especially legislators, would still say “yes” to legalizing assisted suicide after learning the truth in this article about the so-called “peaceful” assisted suicide?

And how many people would still pursue assisted suicide if they knew they might be conscious and in more distress during the process?

Unfortunately and right now, no assisted suicide law requires that kind of  explicit “informed consent”.

The obvious solution is to fight all assisted suicide laws and support all suicidal people.

 

Lessons from the Victory against Assisted Suicide in Maryland

In a dramatic end, the Maryland Senate was deadlocked in a 23-23 on their physician-assisted suicide bill when it came time for the last senator to vote on March 27, 2019.

Sen. Obie Patterson decided not to cast a vote which effectively killed the bill that needed a majority vote to pass.

Sen. Patterson told reporters that “I researched it, I talked with folks and my decision today was not to cast a vote. But I think I did my job. I did not relinquish my responsibility to thoroughly review all of the concerns I had about the bill. At the end of the day, I felt I could not cast a vote.”

This fourth attempt in Maryland to pass a physician-assisted suicide bill had just passed in the Maryland House of Delegates following “an intense and emotional debate that brought some lawmakers to tears”.

Although there was testimony on both sides with many personal stories, a Goucher College poll of people in Maryland showed 62% of those polled supported “allowing terminally ill adults to obtain medication to end their lives”. The Maryland State Medical Society that previously opposed assisted suicide bill had now changed its stance to “neutrality”.

Kim Callinan, CEO of the Compassion & Choices organization that promotes such legislation throughout the US had said that “with baby boomers beginning to reach retirement age, they are dealing with deaths of their parents and peers, causing them to rethink their views on death experiences allowing terminally ill adults to obtain medication to end their lives.”

Disability advocates were forced to wait to testify until all witnesses in favor of the bill testified, effectively blocking those advocates who had to leave.

LESSON ONE: DON’T GIVE UP EDUCATING  LEGISLATORS AND THE PUBLIC ON THE FACTS AND DANGERS OF ASSISTED SUICIDE

Although it seemed that the bill would pass in the Senate, all the efforts by disability advocates, pro-life people, medical professionals, concerned Maryland residents, etc. to write, speak and even march about the facts and dangers of physician-assisted suicide apparently had an effect.

When the bill was sent to a Senate committee to evaluate before being sent to the entire Senate for final passage, members of the committee now had reservations about the assisted suicide bill itself. Committee chairman Senator Bobby Zirkin said the bill as introduced to the committee was “flawed to its core”, even though he said he didn’t want to stand in the way of terminally ill people “who are truly, truly at the end of their life and out of treatment options.”

The senate committee members “spent more than 7 hours hashing out dozens of proposed amendments to the bill” before agreeing to vote it out to the full senate with these changes requiring patients:

“Be at least 21 years old, a change from 18 in the original bill.

Have their diagnosis confirmed by their attending physician and a consulting physician. Those two physicians cannot be in the same practice or have a financial relationship

Ask for the prescription three times, including once in private with a doctor and with witnesses.

Undergo a mental health evaluation.”

The senators also set a stricter definition of who could qualify for assisted suicide, and removed the prescribing doctors’ immunity “from civil lawsuits related to prescribing the fatal drugs.”

Kim Callinan, CEO of Compassion & Choices said “the new drastically revised version of this bill includes troubling amendments that we know from our experience in other states will make the bill nearly impossible for patients to access.”

But as I noted in my previous blog on the assisted suicide bill, the Maryland Against Physician Assisted Suicide coalition correctly noted that even with the revisions, the bill “does not offer sufficient protection of those in our system of health care who are most vulnerable to abuse” and should not be passed.

After the bill died in the senate, one senator said he would sponsor yet another assisted suicide bill sometime in the future.

LESSON TWO: REVIEW THE RESULTS

As the Baltimore Sun article on the defeat of the assisted suicide bill noted:

“Some senators who voted against the bill recalled the General Assembly’s action a few years ago to abolish the death penalty — in part on the grounds that life is precious, even the life of a convicted criminal.

Sen. Michael Hough, a Frederick County Republican, said that his vote in favor of keeping the death penalty has haunted him. He pledged to himself that if he ever faced a vote like that again, “I would err on the side of life.”

Others questioned the logic of allowing doctors, who they see as people who save lives, to participate in a process that leads to death.

“There are no do-overs in this type of law,” said Sen. Bryan Simonaire… “Doctors have and will continue to make mistakes and miscalculations. They are humans. Once a life is taken, it is final.” (All emphasis added)

We may not always know what resonates with a legislator charged with representing his or her district but it is an awesome responsibility to make laws involving life or death decisions. That decision should not just be based on polls or horrific fears about death.

LESSON THREE: REACH OUT TO ALL GROUPS AND PEOPLE

None of us who oppose assisted suicide has the power, money or media support that Compassion and Choices has. But when we band together and use all our personal stories as well as the moral, legal, disability and medical perspectives against assisted suicide, we can win state by state and even educate the public nationally.

Our goal should not only be about defeating assisted suicide and upholding truly ethical healthcare but also to offer hope and support to improve the lives of all people experiencing suicidal despair, whether or not they are terminally ill.

 

 

A Surprise in Maryland, Compassion and Choices is Not Happy

Last month, I joined many other people fighting the fourth attempt in Maryland  to legalize physician-assisted suicide. At that time, the Maryland “End of Life Options” bill  was in a Maryland house committee. We all were disappointed when the bill was later passed and went to the senate committee.

But then things got interesting.

According to a 3/22/19 Baltimore Sun article “Medically assisted suicide bill advances in Maryland, but with changes that frustrate advocates” , committee chairman Senator Bobby Zirkin  said the bill as introduced to the committee was “flawed to its core”, even though he admitted he didn’t want to stand in the way of terminally ill people who wanted assisted suicide.

According to the article, the senate committee members “spent more than 7 hours hashing out dozens of proposed amendments to the bill” before agreeing to vote it out to the full senate with these changes requiring patients:

“Be at least 21 years old, a change from 18 in the original bill.

Have their diagnosis confirmed by their attending physician and a consulting physician. Those two physicians cannot be in the same practice or have a financial relationship

Ask for the prescription three times, including once in private with a doctor and with witnesses.

Undergo a mental health evaluation.”

The senators also set a stricter definition of who could qualify for assisted suicide and removed the prescribing doctors’ immunity “from civil lawsuits related to prescribing the fatal drugs.”

The revised version now heads to the full Maryland Senate for a final vote, probably this week.

Compassion and Choices CEO Kim Callinan says  “The bill in its current form would create many needless hoops and roadblocks for dying patients and put doctors at risk for baseless lawsuits” and make assisted suicide “nearly impossible for patients to access.”

Compassion and Choices is urging the Maryland senate to pass a “more patient-friendly bill” that won’t erect “barrier after barrier for dying patients” including “a mandatory psychological evaluation, numerous additional witness requirements” and “preventing them (family members) from enjoying the precious time they have left with their loved one.”

However, the Maryland Against Physician Assisted Suicide coalition correctly notes that even with the revisions, the bill  “does not offer sufficient protection of those in our system of health care who are most vulnerable to abuse” and should not be passed.

CONCLUSION

Ironically and just last year, I wrote about the impatient calls to expand medically assisted suicide from advocates like influential lawyer Thaddeus Pope argued that the some so-called “legal safeguards” like age limits, the definition of terminal illness and the ability to ingest the lethal overdose were actually “burdensome obstacles”.

Trying to educate the public and especially legislators about the dangers of legalized assisted suicide is a daunting task, especially against extremely well-funded groups like Compassion and Choices and a mostly supportive mainstream media.

But the unexpected surprise in the progression of the Maryland assisted suicide bill and the new opposition by the Connecticut Division of Criminal Justice to the death certificate falsification in that state’s proposed assisted suicide bill shows how cracks are beginning to grow in the false narrative that legalizing assisted suicide is perfectly safe and harmless to society.

 

 

 

 

Is the American Nurses Association Ready to Drop Opposition to Assisted Suicide?

In 2013, the American Nurses Association (ANA) stated this : “The American Nurses Association (ANA) prohibits nurses’ participation in assisted suicide and euthanasia because these acts are in direct violation of Code of Ethics for Nurses with Interpretive Statements (ANA, 2001).” (Emphasis added)

But now in 2019, the ANA is proposing a new position paper to change this. Not only is the ANA attempting to change its previously used term assisted suicide to “aid in dying” (the approved term of Compassion and Choices), but also the Code of Ethics itself.

The draft position paper is titled “The Nurse’s Role When a Patient Requests Aid in Dying” There is an online form for public comments which must be submitted before April 8, 2019. There is no requirement that you have to be a member of ANA or even a nurse to make a public comment. The ANA can also be contacted by email at customerservice@ana.org or by phone at 1-800-284-2378.

There is much in the draft position that I find shocking both as a nurse and a patient. For example, the draft position begins:

“It is the shared responsibility of professional nursing organizations to speak for nurses collectively in shaping health care and to promulgate change for the improvement of health and health care” and “(t)he nurse should remain non-judgmental when discussing end of life options with patients, who are exploring AID” (a.k.a. physician-assisted suicide). (Emphasis added)

This statement flies in the face of the way nurses have traditionally cared for patients considering suicide, whether they are terminally ill or not. Unfortunately, this follows the lead of several medical, nursing and hospice/palliative care organizations that have changed their positions on assisted suicide to “neutrality” or even support.

The ANA draft also states, “The nurse has the right to conscientiously object to being involved in the AID process” but “Nurses are obliged to provide for patient safety, to avoid patient abandonment, and to withdraw only when assured that nursing care is available to the patient.”  (Emphasis added)

The draft suggests that such nurses can “ensure the ongoing care of the patient considering AID by identifying nurse colleagues willing to provide care.”

This is forced cooperation and does nothing to protect nurses’ conscience rights. Such a position would impact not only current nurses but also potential future nurses who have strong ethical principles against helping patients kill themselves.  Many nurses already are worried about the impact of other ANA positions, such as the 2017 “Nutrition and Hydration at the End of Life”  which states, “People with decision-making capacity have the right to stop eating and drinking as a means of hastening death. (Emphasis added)

In a section titled Social Justice, the draft position states:

“Nurses must continually emphasize the values of respect, fairness, and caring,”(ANA, 2015a, p.35). Statutes that allow AID are not present in every state, which presents geographic inequity in terms of access. Additionally, AID medication is expensive, which presents an additional barrier to access for those who cannot afford it, even if they live in a jurisdiction or state where this option is legal. Nurses act to reduce or eliminate disparities. While this is most commonly associated with health promotion and disease prevention, the current AID landscape raises questions of fairness which require ethical reflection.” (Emphasis added)

I find it outrageous to encourage nurses to become social justice warriors  fighting for more access to assisted suicide and cheaper lethal overdoses. And one recommendation in the ANA draft position eliminates all doubt about a radical departure from the 2013 Code of Ethics prohibition of  “participation in assisted suicide”: “Nursing research is needed to provide an evidence base for AID.”

NON-JUDGMENTALISM: IS IT REALLY IN OUR PATIENTS’ BEST INTERESTS?

When I first met “Frank” (not his real name) many years ago, I was puzzled. Frank was a terminally ill man who had just been admitted to my oncology unit for control of his “unbearable pain”. However, Frank didn’t seem to be in any physical pain.

I talked privately to Frank’s wife, Joan, who tearfully confided that Frank was cleaning his gun collection when he asked her if she would still be able to live in their home if, in his words, “anything happened”.

Joan said she knew he was talking about shooting himself and even though she was horrified, she said she thought the right thing to say was: “I will support any decision you make”. However, she later panicked and called the doctor to say that Frank was having unbearable pain. The doctor agreed to admit him and ordered morphine to be given as soon as he arrived.

When I suggested to Joan that Frank’s real question might not be about their home but rather about whether his lingering dying might be too hard on them both, she was stunned. This had never occurred to her. She said she loved Frank and she wanted to care for him until the end. I told her that she and her husband needed to talk.

Frank and Joan then finally had a long overdue open discussion about their sorrow and fears. I told the doctor what I discovered and when I last saw Frank and Joan later that day, they were holding hands and smiling as they left the hospital.

I learned that Frank died peacefully — and naturally — a few weeks later with his wife at his side.

I believe that this situation shows how being “non-judgmental” can itself be lethal. Unfortunately, the public as well as we healthcare professionals are being given the message that a patient’s “right to self-determination” is the most important ethical principle.

What I did with Frank and his wife was a lot like a recent UCLA project started when California legalized physician-assisted suicide. The project showed that “most of what patients needed was to discuss their feelings about their approaching death and process their grief and sense of loss.” The project also found that “only” 25% of these patients seeking assisted suicide went on to use assisted suicide.

When someone is suicidal, it should not matter whether they are terminally ill. Instead, we should treat them with the same care and concern we would give a physically healthy suicidal person.

Anything less would be discrimination and I am telling this to the ANA.

 

 

 

 

Dying Well?

I discovered that former San Francisco Chronicle reporter Katy Butler is now publishing yet another book on dying well (her first book “Knocking on Heaven’s Door” was a best seller) when I read her lead essay in the February 8, 2019 Wall Street Journal article titled “Preparing for a Good End of Life”.

However, I recognized her name from reading her 2014 interview with Compassion and Choices , the well-funded former Hemlock Society that promotes physician-assisted suicide .

In that interview, she urged people to back the 2014 “Better Care. Lower Cost Act” sponsored by Senator Ron Wyden of Oregon “to improve appropriate medical support for people with chronic illness” and to “advocate to reduce payments to doctors who perform futile ‘Hail Mary’ surgeries, tests and treatments near the end of life”. Ms Butler also added that “we have an epidemic of unnecessary suffering at the end of life, and what’s more, it’s expensive!” (All emphasis added)

In that interview, Ms. Butler also talked about how her mother was “exhausted from nonstop caregiving” and how they fought doctors to have her father’s pacemaker turned off after he developed dementia, couldn’t walk to the neighborhood pool, became deaf and “too blind to read the New York Times-his last remaining pleasure”. Ms. Butler said she was glad to learn “from Judith Schwartz at Compassion and Choices that we each have a constitutional right to refuse any medical treatment or ask for its withdrawal.” (Compassion and Choices also promotes VSED, the voluntary stopping of eating and drinking, as well as terminal sedation as two legal options to hasten death in states without physician-assisted suicide laws.)

SCARE TACTICS?

In the Wall Street Journal article, Ms. Butler flatly states-without a source-that “Pain is a major barrier to a peaceful death, and nearly half of dying Americans suffer from uncontrolled pain.” (Emphasis added)

However, in an article “Pain Control at the End of Life” , June Dahl, PhD, a professor of pharmacology at the University of Wisconsin at Madison, and a founder of the American Alliance of Cancer Pain Initiatives states that:

“Thanks to recent advances in pain treatments, roughly 90 to 95 percent of all dying patients should be able to experience substantial relief from pain.”

Although Ms. Butler doesn’t mention physician-assisted suicide specifically, she does strongly advocate taking control of how we die, especially as we get older, because “Advanced medicine is replete with treatments (ventilator, dialysis, defibrillators, feeding tubes, to name a few) that postpone death and prolong misery without restoring health“. (Emphasis added)

She writes that “The best way to achieve a peaceful death is by planning ahead and enlisting the help of loved ones.”

In the Wall Street Journal article, she approvingly writes:

“When Liz Salmi’s mentor lay unconscious on a ventilator in a dark, windowless ICU room, attended by a cacophony of hisses and electronic bloops, she and other close friends lobbied for a better setup. All monitors but one were silenced, a doctor removed the breathing tube, and nurses and aides gurneyed her dying friend quickly into the ICU’s “best room”—a sunny spot, with windows opening to the outdoors.” (Emphasis added)

In this instance, note that the friends-apparently not the family or a “living will”- lobbied  the doctor to remove (not try to wean off) the ventilator. I am not surprised since I have personally heard some doctors say that, if in doubt, it might be legally safer not to treat rather than treat a patient because of the risk of a future lawsuit.

These kinds of articles and books are being used as “end-of-life education” for both the public and professionals. Can this be dangerous?

CAN WHAT YOU SAY POTENTIALLY BE USED AGAINST YOU?

My own mother often told me “I never want to be a burden on you children”. Then she developed Alzheimer’s and a terminal thyroid cancer. I was asked if the family wanted her fed if she got worse. “Of course, if she needs it”, I responded. My mother should die from her condition, not from starvation and dehydration. I  never told the doctors her comment about not wanting to be a burden because she wasn’t a burden. Mom died shortly after she went to a nursing home for safety reasons and we spoon-fed her at the end. She had no pain, thanks to a short course of radiation and chemo that she tolerated. My last memory of my mother was her smiling and enjoying the attention of her family before she died in her sleep.

In 1990, 2 years after my mother’s death, Nancy Cruzan died after 12 long days without a feeding tube, even after the US Supreme Court ruled that Missouri could require “clear and convincing evidence” that she would not want a feeding tube if she was in a “vegetative state.” At the time of the decision, there was no evidence of this.

However, Nancy’s parents later returned to a Missouri court with some of Nancy’s former co-workers who testified that they recalled her saying she would never want to live ‘like a vegetable’.

Three years later in a letter published in the Journal of the American Medical Association by Dr. Ezekiel Emanuel, one of the future architects of Obamacare, acknowledged that this “proof” of Nancy Cruzan’s alleged statement rested only on “fairly vague and insubstantial comments to other people”.

However and most disturbing, he also wrote that:

“…increasingly it will be our collective determination as to what lives are worth living that will decide how incompetent patients are treated. We need to begin to articulate and justify these collective determinations.” (Emphasis added.) Source: The American Journal of Medicine January 1993 Volume 94 p. 115

CONCLUSION

As a hospice and critical care nurse, I strove to make sure dying patients and their families had a good death, either in a hospital or other institution or at home.

Personally, my husband and I also made a careful durable power of attorney document that only designates each other as our decision maker with the right to make decisions about our care rather than signing a “living will” to refuse potential future treatments or set possible future conditions like dementia where we would want treatment stopped or withheld. Instead, we want all current options, risks and benefits of treatment fully explained to the decision maker based on the current condition.

I also encourage people to check out information sites like the Healthcare Advocacy and Leadership organization (I am an advisor) and magazines like “Informed-A Guide for Critical Medical Decisions”  which has sections explaining ventilators, CPR (cardiopulmonary resuscitation), feeding tubes, use and misuse of opioids and sedatives as well as other end of life considerations.

Death is a journey we all will take someday. Especially in today’s world, we should protect ourselves and our loved ones by trying to ensure a truly good death.

The Most Important Thing I Told a Maryland Legislator

I just recently returned from a trip to Maryland where Jack Ames of Defend Life asked me to speak to various groups, hopefully including legislators, about opposing a current physician-assisted suicide bill in the Maryland legislature. The Maryland “End of Life Options” bill was, as usual, based on the first physician-assisted suicide law passed in Oregon with a few additional loopholes.

I was able to speak to many groups during my trip but unfortunately, I could not be scheduled to speak at the legislature’s committee meeting where people from both sides of the issue were able to speak.

However, one of the Defend Life people and I went to the statehouse to see if we could get in to talk to some legislators personally. We were only able to get to speak to one legislator and he was considered to be on the side of passing such a bill. We were told we only had 5 minutes to talk to him.

We were there for much longer.

We talked about our personal experiences, especially about my 30 year old, physically healthy daughter Marie who killed herself after a 16-year struggle with substance abuse using an assisted suicide technique she learned after reading pro-assisted suicide advocate Derek Humphry’s book Final Exit.

I told him about Marie’s death which was horrific instead of peaceful and that was like an atom bomb dropped on our family. I talked about the reality of suicide contagion which led two people close to Marie became suicidal but who were able to be saved. We talked about the increasing epidemic of suicides we have now  and how seductive is the message that killing ourselves can solve problems like not wanting to be a burden on our families. That is what my daughter told me and one of the biggest reasons given by people who have resorted to physician-assisted suicide.

I also told him about at least six problems with physician-assisted suicide laws that most legislators-and the public-don’t know but that are inherent in physician-assisted laws. These include such problems as the total immunity for doctors and the secrecy involved, mandatory falsification of physician-assisted suicide death certificates and the obvious medical discrimination between treating suicidal people who are physically healthy and suicidal people who are considered terminally ill and seeking physician-assisted suicide.

I also told him about my experiences as a nurse with suicidal people-some of whom were terminally ill-and how (except for my daughter) they all changed their minds with listening, support and referral to a mental health specialist. I also told him about a UCLA project started when California legalized physician-assisted suicide. The project offered an intensive intake process for patient requesting physician-assisted suicide conducted by trained psychotherapists and social workers instead of physicians and offering help and support for any needs the patient might have. Not only did the project show that “most of what patients needed was to discuss their feelings about their approaching death and process their grief and sense of loss”, but also that “only” 25% of patients went on to commit physician-assisted suicide.

When you combine this with the fact that an admitted 1/3 of terminally ill Oregon patients who obtain the lethal overdose for assisted suicide never take it and with no follow-up as to whether the diagnosis was wrong, people changed their minds or even what happened to the dangerous lethal medication in the home etc., it is obvious that lethal mistakes are being made.

THE MOST IMPORTANT THING I TOLD THE LEGISLATOR

However, what seemed to be the most important point that stunned the legislator was telling him that if he voted for the physician-assisted suicide bill, he would have to personally shoulder the responsibility for the lives subsequently lost that obviously could have been saved.

I told him that like other ethical medical professionals, my most profound fear was harming or worst of all killing a patient, however inadvertently. I told him that despite my decades of nursing, I always knew I would have to leave my profession if such a tragedy happened because I would be devastated and lose my confidence in my abilities.

I told him that now with the facts we gave him, it was up to him to vote responsibly and hopefully share our information with others.

CONCLUSION

Most people assume that legislators are always lawyers who carefully read and understand legislation before voting. Wrong!

And most people don’t understand that most legislators rely on lobbyists for their information. Well-funded groups like Compassion and Choices are able to afford lobbyists, activists, access to sympathetic media outlets, etc. that promote their physician-assisted suicide agenda while other groups like pro-life groups and disability advocates have to rely on passionate volunteers.

Years ago, a legislator here in my home state of Missouri said he felt his constituents were against a certain piece of legislation. Why? Because he said he had received 4 letters!

This was before the internet has made it easier to contact our representatives but this shows how powerful our individual efforts can be.

We need everyone to speak out and speak up, especially when it comes to dangerous legislative bills like physician-assisted suicide.

 

 

 

Roe v. Wade’s Disastrous Impact on Medical Ethics

This was published in the National Right to Life News January 2019 issue “The Consequences of Roe v Wade” on page 8.

Most people volunteer for the pro-life movement. I consider myself a draftee. For me, there was no “choice.” I became a conscript because of personal and professional experiences that followed in the wake of the Roe v Wade decision.

I was a young intensive care unit nurse when the Roe v. Wade decision came down in 1973. Like most people I knew, I was shocked when abortion was legalized. As a medical professional, I couldn’t imagine good doctors and nurses condoning — much less participating in — such a brutal act.

However, I quickly found that my medical colleagues were split on the issue. In a foreshadowing of what was to come, those supporting what was then said to be “only” early abortions were the most vocal and insistent.. Our formerly cohesive unit began to fray.

However, 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 a born human being in the eye and killing him or her.

How wrong I was!

INFANTICIDE AND MEDICAL DISCRIMINATION AGAINST PEOPLE WITH DISABILITIES

My eyes were opened with the 1982 Baby Doe case in Indiana. Baby Doe was a newborn baby boy with an easily correctable hole between his esophagus (food pipe) and trachea (windpipe). He was denied this lifesaving surgery by his parents and a judge because he also had Down Syndrome. He also was not fed. Six days later, Baby Doe starved and dehydrated to death while his case was being appealed to the Supreme Court.

When we read the story, my husband and I wanted to adopt Baby Doe. But all offers of adoption were refused.

When our daughter Karen was born a few months after Baby Doe, we were stunned that she had both Down Syndrome and a severe heart defect but I was determined that she would not become another Baby Doe.

The cardiologist told us that Karen had an 80-90% chance of survival with one open-heart surgery by age 6 months. He also gave us a “choice”- to let Karen die. I was outraged that he could even consider not treating my daughter like any other baby with the same heart defect.

Even worse, when my daughter was hospitalized with pneumonia at 4 months, I was tipped off that my trusted pediatrician had made her a “do not resuscitate” without my knowledge or consent because “Nancy is too emotionally involved with that retarded baby”. I then realized that “choice” was just an empty slogan that had infected medical ethics.

Although Karen survived that incident, she unfortunately died at age 5 1/2 months just before her scheduled surgery.

At last I finally joined the disability rights and the pro-life movements.

THE “RIGHT TO DIE” MOVEMENT

A few years after Karen, I was shocked by the so-called “right to die” movement that pushed “living wills” to refuse even food and water by tube if or when a person became incapacitated. I became involved in both the Nancy Cruzan and Terri Schiavo cases.

Both involved seriously brain-injured, non-dying young women declared “vegetative”, a dehumanizing term invented in 1972. I wrote an op-ed for my local paper predicting that the potential pool of victims would expand if death by starvation and dehydration was allowed.

I was thinking about my own mother who had Alzheimer’s and cancer and indeed I was asked at one point if our family was going to feed her. I replied that my mother would die naturally from her condition, not starvation and dehydration.

How far we have descended! Now,  prominent doctors and the American Nurses Association are promoting what Compassion and Choices calls voluntary stopping of eating and drinking by mouth (VSED) as a legal option to  “speed up dying” for competent people with serious illnesses. “Living wills” to prevent even spoon feeding for people with dementia are also being developed.

PHYSICIAN-ASSISTED SUICIDE

The “right to die” movement ultimately did expand into the Compassion and Choices organization, the well-funded former Hemlock Society that promotes physician-assisted suicide by lethal overdose. In the late 1990s, Oregon became the first state to legalize assisted suicide. Now a handful of states and the District of Columbia have followed Oregon but the relentless effort to legalize physician-assisted suicide continues in the other US states.

Over the years, I had cared for many suicidal people and I saw the seductive effect of people like Jack Kevorkian, the infamous “Dr. Death” on them. As a nurse, I knew how dangerous it was to portray suicide as a “solution” to many at-risk people.

But it became personal when my 30 year old daughter Marie killed herself using an assisted suicide technique that she learned reading the pro-assisted suicide book “Final Exit”. My Marie had struggled with drug addiction for 16 years and despite our best efforts and those of her therapists, she finally succumbed to despair. She was the only suicidal person I ever lost.

I was not surprised when two people close to Marie became suicidal after her death. Fortunately, they were saved.

Suicide contagion is not a figment of someone’s imagination but a real phenomenon. It is no coincidence that the US suicide rate has skyrocketed since Oregon first legalized physician-assisted suicide.

EUTHANASIA

I also discovered that it’s only a short step from “I wouldn’t want to live like that” for assisted suicide to “No one should have to live like that” for euthanasia.

In 2003, Dr. Lloyd Thompson, then head of the Vermont Medical Society, escaped prosecution for intentionally giving a paralyzing, “life ending drug” to an elderly woman with terminal cancer whose breathing machine had been removed. The family had opposed prosecuting the doctor.

 Ironically and around the same time, I was threatened with the loss of my job after I refused to increase a morphine drip “until he stops breathing” on an older man who did not stop breathing as expected after his ventilator was removed. The patient was presumed to have had a stroke when he did not wake up from sedation after 24 hours. I reported the situation up the chain of command at my hospital but no one supported me. I escaped termination that time but I refused to back down.

An autopsy later showed that the man had no lethal condition or brain injury.

CONCLUSION

As the late Fr. Richard John Neuhaus wisely said  ” I believe in the slippery slope the same way I believe in the Hudson River. It’s there.”

But until and unless we are ready to recognize what we unlock when we legalize “just a little bit” of medical killing, we may find that the slippery slope has no bottom and that no one is safe.

And I saw it all start with the Roe v Wade decision legalizing abortion.

Physician-Assisted Suicide and the Fight for the Soul of Healthcare

Despite the US Supreme Court’s unanimous rejection of a constitutional right to physician-assisted suicide in the 1997 Vacco v. Quill decision , the well-funded   pro-assisted suicide organizations like the Hemlock Society (now called Compassion and Choices) remained undeterred in their efforts to legalize assisted suicide throughout the US.

Along with its efforts to pass physician-assisted suicide laws, Compassion and Choices also focused on changing the health care system itself by influencing health care professionals and especially their organizations.

Thus, Oregon became the first state to pass a physician-assisted suicide law (by voter referendum), but only after the Oregon Medical Association changed its position from opposition to neutrality and despite the American Medical Association’s long-standing opposition to physician-assisted suicide.

However, only a few other states eventually did legalize assisted suicide over the next 20 years either by legislation or voter referendum while most states rejected physician-assisted suicide, even after almost yearly efforts in legislatures and overwhelmingly supportive mainstream media coverage.

But now Compassion and Choices is touting  that “(a) growing number of national and state medical organizations have endorsed or adopted a neutral position regarding medical aid in dying (physician-assisted suicide) as an end-of-life option for mentally capable, terminally ill adults.” (Emphasis added)

For now at least, the American Medical Association (AMA) itself continues to oppose physician-assisted suicide  despite strong pressure from groups like American Association of Family Physicians to take a neutral stance. If the AMA does change its stance to neutrality, it won’t take long until groups like Compassion and Choices finally realize their goal of “integrating and normalizing medical aid in dying (aka physician-assisted suicide) suicide as an additional end-of-life option“.

Nurses are also not immune to the efforts to convince health care professionals to accept or be neutral on physician-assisted suicide. For example, a “policy dialogue” at the American Academy of Nursing’s annual conference in Washington, DC. was covered in a May 2018  article in the American Journal of Nursing titled “Assisted Suicide/Aid in Dying: What is the Nurse’s Role?” (reprinted in full by Death with Dignity). The article included this disturbing news

“In 2018, the American Nurses Association (ANA) will be updating its current position statement “Euthanasia, Assisted Suicide, and Aid in Dying”. (Emphasis added)

Ominously and just last year the ANA approved VSED (voluntary stopping of eating and drinking) stating that “people with decision making capacity have the right to stop eating and drinking as a means of hastening death.” (Emphasis added)

Not surprisingly, our government is also not immune to the aspirations of Compassion and Choices. In its “Federal Policy Agenda / 2016 & Beyond” , Compassion and Choices set the following priority:

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….”

Compassion and Choices lists as one of its accomplishments that it:

Pioneered the medical model of aid in dying that helps ensure that doctors can ethically practice aid in dying in an open, legitimate and accessible way, and integrates the option into patients’ end-of-life care. The culmination of that work was the publication of clinical criteria in the Journal of Palliative Medicine in December 2015. (Emphasis added)

Now, a Compassion & Choices’ website even 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.

We may now be seeing the potential results of this agenda in the current  “The Palliative Care and Hospice Education and Training Act” that is endorsed by Compassion and Choices . The bill was passed in the US House of Representative and is currently in the Senate health committee as SB693. If passed, the bill would authorize grants and contracts to promote education, research and the development of faculty careers in hospice and palliative care. (I have already contacted my home state senator about the potential problems with this legislation.)

CONCLUSION

Several years after Oregon voted to legalize physician-assisted suicide, I began to notice a stark difference between my fellow health care colleagues who supported legalizing physician-assisted suicide and those who didn’t. Doctors and nurses who supported such laws often spoke about patients who “needed to die” even though those patients never even mentioned wanting to die. They often tried to get out of caring for or even talking to difficult patients. In contrast, those doctors and nurses who were appalled by physician-assisted suicide were the ones who patiently listened to patients and addressed their fears and hopes, treated relatives as part of the care team and actively advocated for the best care for their patients.

But with Compassion and Choices’ leaders like Barbara Coombs Lee, one of the architects of Oregon’s assisted suicide law, even arguing against strong conscience rights protections for those of us who refuse to participate, it may become impossible in the future to even find a health care professional committed to protecting the life of every patient.

All of us, both medical and lay people, must speak out against physician-assisted suicide before our health care system becomes irreparably corrupted.

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.