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.

 

While Opposition to Nursing Involvement in Assisted Suicide Grows, a Dire Warning from Canada

In March, I wrote a blog “Is the American Nurses Association Ready to Drop Opposition to Assisted Suicide?” about  the ANA draft position paper changing its stance from opposition to assisted suicide to “The Nurse’s Role When a Patient Requests Aid in Dying”. “Aid in Dying” is the ANA’s new term for assisted suicide. I included a link for public comments on this change that gave a deadline of April 8, 2019.

Although the ANA  claims that it ‘is the premier organization representing the interests of the nation’s 4 million registered nurses’, less than ten percent of the nation’s nurses are members of the ANA or other professional organizations” and that number is declining.

I belonged to the ANA decades ago but left when I saw the organization take radical positions without even informing us. Now, no nurse I know belongs-unless he or she is in politics, academia or administration.

Even though I regularly get medical and nursing news updates along with constant ads from the ANA, I never see ANA’s proposed new position changes on hot button issues like VSED (voluntary stopping of eating and drinking to hasten death) and assisted suicide until alerted by people in my network. Unfortunately, although some of us wrote public comments opposing nursing involvement in VSED, the ANA approved the change in 2017

This time, the ANA’s draft position on assisted suicide led to an outpouring of criticisms and pleas not to approve the change.

SOME RESPONSES TO THE ANA DRAFT RECOMMENDATIONS

The Catholic Medical Association issued a statement opposing the ANA’s draft position stating:

“These guidelines compromise not only the patient’s life, but also the conscience rights of nurses everywhere,” said Dr. John Schirger, President of the CMA.”

“A nurse or any health care provider should never abandon a patient or refuse comfort and care to a patient. But AID is not care and is the ultimate abandonment of a patient. Forcing the nurse to facilitate AID makes the nurse complicit in such abandonment,” said Dr. Marie Hilliard, Co-Chair of the CMA’s Ethics Committee.”

The National Association of Catholic Nurses issued their comments on the ANA’s draft such as:

“All the legal system can do is decriminalize AID so that nurses and physicians are not prosecuted for killing patients or helping them to kill themselves.  AID is the antithesis of social justice.”

“Nursing is a moral endeavor and much is at stake when nurses breach the moral obligation to first do no harm.  Harm is precisely what support of AID does.  It harms  the patient who is killed, the nurse who must make themselves indifferent to the patient’s suffering and convince themselves that killing is okay, the professional relationship that is built on trust that the nurse will not harm the patient, and society that will come to view nurses as potential accomplices in killing rather than as true healers and providers of authentic compassionate care.  As Florence Nightingale is quoted to have said, “The very first requirement in a hospital, is that it should do the sick no harm.”

The National Association of Pro-life Nurses (NAPN) responded in their comments that:

“Social and legislative shifts” do not make a previously immoral act moral. ”

“Aid in dying IS euthanasia. It is the deliberate taking of a life whether it is requested by the patient or not.”

Wesley Smith of the Discovery Institute’s Center on Human Exceptionalism asked “Now Will Nurses Only Prevent Some Suicides?” wrote:

“I hope the membership of the ANA will oppose their leaders’ attempt to accommodate the culture of death. If nurses become “non-judgmental” — e.g., indifferent — to some suicides, the consequent failure to request specialized preventative interventions could become the precipitating omission that sends some suicidal patients into the abyss.”

And over 1000 people signed an online petition opposing the ANA draft position by the April 8, 2019 deadline.

A DIRE WARNING FROM CANADA

The Canadian Catholic Nurses joined the National Association of Catholic Nurse in opposing the ANA’s draft position and gave a chilling look at what may be our future if  legalized assisted suicide is not stopped:

“Our association formed in 2018 primarily in response to Canadian nurses’ moral distress regarding the nation-wide legalization of medically induced death. Professional associations and licensing bodies across Canada endorsed the legal changes, requiring conscientious objectors to participate in “Medical Assistance in Dying” by “effective referral” to facilitate access at the patient’s request. Faith-based health care facilities are pressured to participate. Nurse practitioners are trained and qualified to prescribe and administer lethal doses of medication to patients that they or others deem eligible for euthanasia.”

 Social justice demands that nurses advocate for the protection of life until natural death, not for increased access to induced death. The Canadian experience with assisted suicide and euthanasia provides evidence for your continued resistance to the practice.

Unlike Oregon, Canada has not experienced a growth in palliative care along with the rapid expansion of induced death. Instead, we experience ongoing demands for access to lethal injections for new categories of patients, including “mature minors;” those who write advanced directives; and those whose mental illness is the sole condition underlying their request. We urge the ANA to maintain its courageous opposition to assisted suicide and euthanasia.” (All emphasis added)”

Legalized assisted suicide is more than a legal, medical or nursing problem. It is a corrupting influence on our society that will destroy the essential protections of truly ethical healthcare for us all.

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.

 

 

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.

 

 

 

 

What about Ventilators and “Pulling the Plug”?

When I first became a registered nurse in 1969, ICUs (intensive care units) were still new. The first one I worked was set up in the former visitors’ lounge and we learned how to read EKGs (heart tracings) by using a book.

By the early 1970s, I worked in a surgical/trauma ICU where we used sophisticated ventilators like the MA-1. We were able to get almost all our patients off ventilators by weaning, the process of gradually lowering ventilator support until the patient can breathe on his or her own.

But in 1976, I was shocked by the Karen Quinlan case that changed everything.

Karen was a 21 year old woman who suffered brain damage after apparently taking drugs at a party. She was hospitalized and placed on a ventilator. When she was thought to be in a “persistent vegetative state”, her adoptive parents asked that her ventilator be removed. The doctors disagreed and they case eventually went to the New Jersey Supreme court that allowed the removal of the ventilator on the grounds of an individual’s right to privacy.  Shortly afterward, California passed the first “living will” to refuse “life support” if or when the signer is incapacitated.

Ironically, Karen lived 10 more years because, as some ethicists criticized, she was weaned off the ventilator instead of just abruptly stopping the ventilator.

My experience with ventilators became personal in 1983 when my baby daughter Karen died on a ventilator before she could get open-heart surgery. Unfortunately, one young doctor earlier offered to take her off the ventilator to “get this over with”. I reported him to the chief of cardiology who was furious with the young doctor.

In the 1990s, I returned to working in an ICU and was shocked by the development of the “terminal wean” for some patients on ventilators. Often the families were told that there was no hope of a “meaningful” life. The terminal wean involved abruptly disconnecting the ventilator and “allowing” the patient to die. I brought up at least trying regular, gradual weaning and oxygen as we did for the other patients on ventilators but I was ignored.

After I retired from bedside nursing, I was asked to be with an elderly man on a ventilator who had had a massive stroke and the family was told that he would never have any quality of life and would die soon anyway. I tried to bring up weaning but some members of the family were adamant.

When the ventilator was stopped. I held the man’s hand and prayed while he gasped for air and turned blue. I asked the nurse to at least giving him oxygen for comfort but she ignored me. Instead, she gave frequent doses of morphine intravenously until the man’s heart finally stopped after 20 minutes.

I am still haunted by this man’s death.

INFORMED CONSENT?

The medical definition of informed consent requires understanding “the purpose, benefits, and potential risks of a medical or surgical intervention…”.

But most people seem to have a vague understanding of ventilators when they sign a “living will” or other advance directives and thus have very little information about this often life-saving medical intervention.

As a nurse, I found that most people-especially the elderly-tend to automatically check off ventilators without understanding that a sudden problem with breathing can come from a number of treatable conditions that don’t require long-term use of a ventilator such as  asthma, drug overdoses, pneumonia and some brain injuries.

In some circumstances such as certain spinal cord injuries and late-stage neurodegenerative diseases like amyotrophic lateral sclerosis, the ventilator is  necessary long-term to live. But even then, people like Christopher Reeve and Stephen Hawking have used portable ventilators to continue with their lives. Some people with disabilities use small ventilators only at night.

It is important to know that ventilators move air in and out of the lungs but do not cause respiration-the exchange of oxygen and carbon dioxide that occurs in lungs and body tissues. Respiration can occur only when the body’s respiratory and circulatory systems are otherwise intact. A ventilator cannot keep a corpse alive.

It’s also important to know that not all machines that assist breathing require the insertion of a tube into the windpipe. Non-invasive positive-pressure ventilation like the BiPap successfully used for my elderly friend Melissa allowed her to use a face mask to assist her breathing until antibiotics cured her pneumonia.

WEANING FROM A VENTILATOR

Many patients are easy to wean from a ventilator but some patients are more difficult.

Years ago, I cared for an elderly woman with Alzheimer’s who needed a ventilator when she developed pneumonia. She had made her son and daughter her medical decision makers in her advance directive.

However, the doctors found it very difficult to try to wean the ventilator after the woman improved. They spoke to the family about removing the ventilator and letting her die. The daughter agreed but the son was adamantly against this.

The woman was totally awake after the sedation to keep her comfortable on the ventilator was stopped. She was cooperative and made no effort to pull out the tube in her windpipe. She just smiled when asked if she wanted the ventilator stopped.

Having known of some great respiratory therapists in the past who were able to successfully wean difficult patients from ventilators, I suggested that she be transferred. She was transferred and a week later we were told that she was successfully weaned from her ventilator.

About a year later, I encountered the woman again when she was recuperating after a routine surgery. Although her Alzheimer’s disease was unchanged, she was doing well in an assisted living residence.

CONCLUSION

As a student nurse, I was as initially intimidated by ventilators as anyone else. But as I learned how to use them and saw the constant improvements not only in the technology but also in our care of patients on ventilators, I came to see ventilators as a great blessing when needed.

And while we are never required to accept treatment that is medically futile or excessively burdensome to us, sometimes this can be hard to determine-especially in a crisis situation. Most of my patients on ventilators recovered but some could not be saved. We were surprised and humbled when some patients with a poor prognosis recovered while others who seemed to have a better chance died unexpectedly. There are no guarantees in life or death.

That is why my husband and I wrote our advance directives that designate each other as our decision maker with the right to have all current options, risk and benefits of treatment fully explained.

We don’t want an advance directive that could be hazardous to our health!

 

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.

 

 

 

Why Can’t We Protect Babies who Survive Abortion?

I still remember my shock when nurse Jill Stanek came forward to describe how she discovered a baby with Down Syndrome born alive after a late-term abortion who was left in a dirty utility room to die at Christ Hospital in Oak Lawn, Illinois in 1999. She found that these second or even third trimester babies were sometimes born alive after an induced labor abortion. At great risk both professionally and personally, Jill Stanek fought this barbaric practice publicly and testified in Congress. This resulted in the passage of the Born-Alive Infants Protection Act of 2002.

Just a year later, Congress was finally able to pass The Partial Birth Abortion Ban Act of 2003  many years after it was discovered that abortionists could ensure the death of the baby by delivering the baby feet first except for the head and then suctioning out the baby’s brain.

But in October 2003, abortionist Warren Hern wrote an article explaining how he got around the new law:

“I reassured her (a patient) that I do not perform the “partial-birth” procedure and that there is no likelihood that the ban’s passage would close my office and keep me from seeing her. The fetus cannot be delivered “alive” in my procedure—as the ban stipulates in defining prohibited procedures—because I begin by giving the fetus an injection that stops its heart immediately.” (Emphasis added)

And just last year, the US House passed the Born-Alive Abortion Survivors Protection Act (H.R. 4712) that:

  • Requires health care practitioners present at the time a child is born alive during an abortion or attempted abortion to exercise the same degree of care to preserve the life and health of the child as any health care practitioner would provide to a child born alive at the same gestational age;

  • Requires that children born alive during an abortion or attempted abortion be transported and admitted to a hospital immediately following the administration of emergency care;

However and just days ago, this Act was blocked from unanimous consent in the US Senate by Democrats .

This happened despite the controversial on-air comments by Democrat Governor Northam of Virginia defending a bill allowing abortions up to birth. When asked what would happen if the baby was born after the abortion, Gov. Northam said that “the infant would be resuscitated if that’s what the mother and the family desired, and then a discussion would ensue between the physicians and the mother.” (Emphasis added)

In other words, the same infanticide by neglect that nurse Jill Stanek discovered in 1999.

The Virginia abortion bill thankfully died in committee but there is now a frenzy among abortion supporters to pass radical pro-abortion laws like New York’s in other states like Rhode Island  and Vermont that allow abortions up to birth, allow non-doctors to perform abortions and to prohibit any effort to “deny, regulate or restrict” abortion.

The most recent and extreme bill just passed the House in New Mexico. This bill redefines abortion as merely “health care” and even removes conscience rights for medical professionals who refuse to participate. Governor Michelle Lujan Grisham has promised to sign the bill into law if it passes the New Mexico Senate.

CONCLUSION

In my home town of St. Louis, Missouri, the US Supreme Court voted 7-2 in the infamous 1857  Dred Scott v Sandford decision about slavery which held that black people were an “inferior class of beings”  and thus ” had no rights or privileges but such as those who held the power and the Government might choose to grant them”.

It took a civil war and the Emancipation Proclamation to end this travesty. The Dred Scott decision is now remembered as a turning point that ignited a political firestorm.

Will these current outrageous efforts to also make unborn babies an “inferior class of beings” with “no rights or privileges” prick the conscience of the American people and become a turning point in the fight to restore respect for the lives of preborn human beings?

We must never give up trying!

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.