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

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

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

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

BIOETHICS AND CONSCIENCE RIGHTS

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

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

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

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

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

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

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

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

……

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

……

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

CONCLUSION

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

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

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

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

 

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

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

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

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

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

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

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

Here are some excerpts:

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

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

……….

THE PALLIATIVE AND HOSPICE CONNECTION

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

………..

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

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

………….

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

………..

WHERE THE MONEY AND POWER IS

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

The priorities on its agenda include:

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

Also included are

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

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

………

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

CONCLUSION

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

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

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

Good News/Bad News about Alzheimer’s

First the good news:

Alzheimer’s disease is a currently irreversible, progressive brain disorder that slowly destroys memory and thinking skills and, eventually, the ability to carry out the simplest tasks.

However, a new study “Estimation of lifetime risks of Alzheimer’s disease dementia using biomarkers for preclinical disease” shows that “most people with preclinical Alzheimer’s disease will not develop Alzheimer’s dementia during their lifetimes”, according to a mathematical analysis based on several large, long-term studies.

According to the Alzheimer’s Association , the term “preclinical” refers to “a newly defined stage of the disease reflecting current evidence that changes in the brain may occur years before symptoms affecting memory, thinking or behavior can be detected by affected individuals or their physicians”.

Although biomarkers are still being investigated and validated, this new study can be reassuring to many people worrying that, for example, forgetting where they left their car keys means the beginning of Alzheimer’s.

While the cause of Alzheimer’s is still a mystery, research on the disease is massive and ongoing. Currently, there are drug and non-drug treatments that may help with both thinking and behavior symptoms. There is hope.

THE BAD NEWS

With the many negative stories in major media about Alzheimer’s, it is no wonder that people are so afraid of it.

As Deakin University Professor Megan-Jane Johnstone says in her book “Alzheimer’s disease, media representations and the Politics of Euthanasia-Constructing Risk and Selling Death in An Ageing Society”  :

“Alzheimer’s has been portrayed as the ‘disease of the century’ that is poised to have a near catastrophic impact on the world’s healthcare system as the population ages…

This representation of the disease—along with other often used terms such as ‘living dead’, a ‘funeral that never ends’ and a ‘fate worse than death’—places Alzheimer’s as a soft target in the euthanasia debate because it plays to people’s fears of developing the disease and what it symbolizes. It positions Alzheimer’s as something that requires a remedy; that remedy increasingly being pre-emptive and beneficent euthanasia.” (Emphasis added)

While countries like Belgium and Holland have long allowed lethal injections for people with Alzheimer’s , this is forbidden in the US-for now. However, assisted suicide groups are now trying new “living wills” stating that if or when the person is diagnosed “with Alzheimer’s or another incurable dementing disease”, he or she refuses not only a feeding tube but also even assistance with oral eating and drinking to end their lives.

Compassion and Choices, the well-funded former Hemlock society, has long promoted VSED (voluntary stopping of eating and drinking) as a legal alternative to assisted suicide in states without assisted suicide laws. But at the present time, people who cannot make medical decisions because of  conditions like Alzheimer’s cannot sign an advance directive.

So influential major media outlets like the New York Times often publish articles such as the May 30, 2018 article titled “Alzheimer’s? Your Paperwork May Not Be in Order” that quote Dr. Judith Schwarz:

“People should at least understand what the normal process of advanced dementia is about,” Dr. Schwarz said. “Feeding tubes are not the issue…. Opening your mouth when a spoon approaches is a primitive reflex that persists long after you’ve lost the ability to swallow and know what to do with what’s put in your mouth.” (Emphasis added)

Dr. Schwarz’s advice?

“Complete her organization’s Advance Directive for Receiving Oral Food and Fluids in the Event of Dementia.”

But what Dr. Schwarz and others do not want to talk about is the often tragic reality of deliberate death by starvation and dehydration.

Although media articles portray VSED as a gentle, peaceful death, a 2018 Palliative Practice Pointers article in the Journal of the American Geriatric Society  titled Voluntary Stopping Eating and Drinking” states:

“VSED is an intense process fraught with new sources of somatic and emotional suffering for individuals and their caregivers…The most common symptoms encountered after starting VSED are extreme thirst, hunger, dysuria (painful urination due to concentrated urine NV),  progressive disability, delirium, and somnolence.” (Emphasis added)

Most chillingly, the authors state:

 “Because an individual with delirium may forget his or her intention and ask for drinks of water, caregivers will struggle with the need to remind the incapacitated individual of his or her own wishes. This possibility should be anticipated and discussed with the individual in advance. While reminding the individual of his or her prior intentions may feel like coercion, acquiescing to requests for water will prolong the dying process for someone who has clearly articulated the desire to hasten death.” (Emphasis added)

The authors also state that if the patient’s suffering becomes severe, “proportionate palliative sedation and admission to inpatient hospice should be considered”. This is not the so-called peaceful death at home within two weeks that people envision with VSED.

Lastly, on the legal requirement of  a cause on the death certificate, the authors state:

“the clinician may consider including dehydration secondary to the principle illness that caused the individual’s intractable suffering. Although VSED is a self–willed death (as stopping life support might also be), use of the word “suicide” on death certificates in this context is discouraged because in incorrectly suggests that the decision for VSED stemmed from mental illness rather than intolerable suffering.” (Emphasis added)

So, like assisted suicide, the real cause of death is basically falsified with the rationale that the deliberate stopping of eating and drinking to hasten death is just another legal withdrawal of treatment decision like a feeding tube.

CONCLUSION

Years ago, my mother told me that she never wanted to be a burden on her family.

I never told my children that-especially when they were teenagers and already thought I was a burden to their lifestyles! Instead, I told them that the “circle of life” includes caring for each other at all ages and stages. Such caring also eliminates future guilt and leaves a sense of pride that we did the best we could for each other during our lives.

When my mother developed Alzheimer’s in the late 1980s (and later terminal thyroid cancer), a friend asked if I was going to feed her. At the time, my mother was fully mobile and able to get ice cream out of the freezer and eat it. I was shocked and offended.

“Do you want me to tackle her?!” I asked my friend.

“Oh, no!”, he answered, “I was talking about a feeding tube later on.”

I told him that my mother would die of her disease, not from deliberate starvation and dehydration.

Near the end of her life, we did spoon feed my mother and she enjoyed it very much before dying peacefully in her sleep.

For decades now, I have enjoyed caring for many people with Alzheimer’s or other dementias both personally and professionally.  I can attest that such people can be sweet and funny and as well as difficult at times.

Just like the rest of us!

Conscientious Objection and the Duty to Refer

When the Trump administration announced a new department of Conscience and Religious Freedom, the pushback from abortion and assisted suicide proponents like Planned Parenthood and Compassion and Choices was immediate and accompanied by apocalyptic predictions of harm to patients.

Now the term “conscientious objection” is increasingly being used rather than “conscience rights” when it comes to health care professionals. I believe this is not accidental. The term “conscience rights” is a powerful and accepted term about individual rights while “conscientious objection” is associated with the traditional definition of  “A person who refuses to serve in the military due to religious or strong philosophical views against war or killing” and who “may be required to perform some nonviolent work like driving an ambulance.” (Emphasis added)

Nevertheless, in a March 30, 2018 Medscape (password protected) article titled “Should Clinicians With Conscientious Objections Be Protected?”, well-known ethicist Arthur L. Caplan, PhD criticizes the new Conscience and Religious Freedom Division as an expensive “overreaction” that can be mediated by allowing health care professionals to refuse to provide a legal act (like abortion or assisted suicide in certain areas NV) but requiring them “to tell patients where they can go and how they can go about getting it.”

This echoes last year’s New England Journal of Medicine article “Physicians, Not Conscripts — Conscientious Objection in Health Care” by Dr. Ezekiel Emanuel (one of the architects of Obamacare) and Ronit Y. Stahl, PhD. who insist that medical professionals “cannot completely absent themselves from providing these services” and are still required to convey “accurate information” and provide “timely referrals to ensure patients receive care.”

The authors even state that:

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

Their rationale for this extreme position is that “the patient comes first, which means the patient’s conscience and autonomy receive priority over those of the physician.”  (Emphasis added)

However, this could now conflict with the recently amended federal Affordable Care Act (aka Obamacare) that states:

 “No qualified health plan offered through an Exchange may discriminate against any individual health care provider or health care facility because of its unwillingness to provide, pay for, provide coverage of, or refer for abortions.”

and

“The Federal Government, and any State or local government or health care provider that receives Federal financial assistance under this Act (or under an amendment made by this Act) or any health plan created under this Act (or under an amendment made by this Act), may not subject an individual or institutional health care entity to discrimination on the basis that the entity does not provide any health care item or service furnished for the purpose of causing, or for the purpose of assisting in causing, the death of any individual, such as by assisted suicide, euthanasia, or mercy killing.” (All emphasis added)

THE DUTY TO “CONVEY ACCURATE INFORMATION” AND “REFER”

Ironically, do groups like Planned Parenthood and Compassion & Choices really want to require a medical professional opposed to abortion and/or assisted suicide to convey accurate information?

First of all, medical referrals require a measure of trust. For example, no doctor or nurse would knowingly refer a patient to another doctor or organization that he/ she considers incompetent or unethical or for a procedure the medical professional considers harmful to the patient. When a patient asks for procedures like abortion or assisted suicide, the medical professional should be free to refer the patient to support services like crisis pregnancy centers, etc. or to an ethical palliative care specialist, mental health expert, etc. The medical professional should also be free to convey accurate information regarding abortion such as  how abortions are performed, potential physical and emotional complications, fetal development, etc.  With assisted suicide, the medical professional should be free to discuss such issues as the potential complications of a lethal overdose, the potential effects on family and friends, the criminal/ civil immunity of the assisted suicide doctor if the assisted suicide goes awry, etc.

Medical professionals should also have the right to be honest and tell patients if they personally don’t know any doctor or organization that they would recommend to provide a referral for abortion or assisted suicide.

Patients, especially those in distress, need a well-informed medical professional who really listens to their concerns and responds with facts and helpful options rather than one who just hands out a “politically correct” referral.

CONCLUSION

The so-called duty to perform/participate in a life-ending procedure or refer for one is not really about conscience rights but rather another way to extinguish resistance to abortion and assisted suicide, normalize such procedures into standard medical practice and discourage/bully ethical health care professionals into leaving or never entering the medical professions.

Those of us who believe in medical ethics as, first and foremost, doing no harm to patients must actively fight this for the sake of our professions and for the safety of the public that puts their lives in our hands.

If we don’t speak up for our medical professions and our patients, who will?

 

The New Federal Conscience and Religious Freedom Division

As a nurse threatened with termination for refusing to participate in an unethical health care decision years ago, I have a special interest in conscience rights for health care professionals.

Over the past several decades, new threats to conscience rights have widened from refusing to participate in abortions to other deliberate death decisions like withdrawal of feedings from people with serious brain injuries, VSED (voluntary stopping of eating and drinking), terminal sedation and physician-assisted suicide.

Thus, I am pleased that the Trump administration just announced the new Conscience and Religious Freedom Division  in the department of Health and Human Services’ Office for Civil Rights (OCR) to enforce “federal laws that protect conscience and the free exercise of religion and prohibit coercion and discrimination in health and human services”. The division specifically mentions “issues such as abortion and assisted suicide (among others) in HHS-funded or conducted programs and activities” and includes a link to file a conscience or religious freedom complaint “if you feel a health care provider or government agency coerced or discriminated against you (or someone else) unlawfully”.

Predictably, both Compassion and Choices and Planned Parenthood immediately condemned the new department.

In a recent fundraising email, Compassion and Choices states that:

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

Planned Parenthood is just as adamant and includes other issues in their reaction:

“OCR is an important office within the HHS that’s meant to protect health care for marginalized communities, including LGBTQ people and underserved women. But the creation of the new “Conscience and Religious Freedom Division” paves the way for discrimination against people for a variety of reasons — be it their gender identity, sexual orientation, or decision to access a safe, legal abortion.” (Emphasis in original)

A SHORT RECENT HISTORY OF FEDERAL CONSCIENCE RIGHTS PROTECTIONS

In response to declining numbers of doctors willing to do abortions in the 1990s, efforts began to mainstream abortion into the health professions such as requiring abortion training for OB/GYNs, shifting training and practice into teaching hospitals and  integrating abortion into regular health care.

The National Abortion Federation along with Medical Students for Choice, pushed for change and in 1995, the Accreditation Council for Graduate Medical Education ruled that OB/GYN residency programs must include abortion training or lose accreditation.

That was overturned the next year with the Coats Amendment passed by Congress but  efforts to marginalize pro-life medical professionals continued, especially with newly passed physician-assisted suicide laws and well-publicized withdrawal of feeding tube cases like Terri Schiavo’s.

In 2008, the Christian Medical Association compiled a list of dozens of real-life cases of discrimination in health care, including doctors, medical students, nurses and pharmacists.

That same year, President Bush strengthened the HHS rules protecting the conscience rights of doctors and nurses to refuse to perform abortions.

In 2011, the Obama administration dismantled key provisions of the Bush administration conscience rights rules.

That same year, 12 New Jersey nurses faced firing for refusal to participate in abortion and had to rely on groups like Alliance Defending Freedom to bring a  lawsuit defending their rights. They were finally vindicated in 2013.

Right now, Wisconsin is considering a physician-assisted suicide bill that states a doctor’s refusal to prescribe the lethal drugs or refer the patient to a willing doctor “constitutes unprofessional conduct”.

Obviously, conscience rights cannot depend just on litigation, conflicting state laws or professional organization positions like the American Medical Association’s  or American Nurses Association’s that don’t vigorously defend conscience rights.

As explained on the Dorsey Health Care group website ,

“In January 2018, OCR announced a proposed rule to strengthen conscience-based protections for individuals and entities with objections to certain activities based on religious belief and moral convictions.”

“OCR now proposes to return much of 45 CFR part 88 to its 2008 Bush-era form, adding a requirement that certain recipients of HHS funds certify they comply with conscience protection laws and notify individuals of their rights thereunder”, enhance investigative and enforcement abilities and expands its enforcement authority to more conscience-protection laws than the 2008 or 2011 iterations. It will also “handle complaints [both formal and not], perform compliance reviews, investigate, and seek appropriate action,” including terminating funding and requiring repayment. OCR states “that a more centralized approach to enforcement of conscience protections is necessary in part due to rapidly rising complaints.” (Emphasis added) Comments on this proposed rule can be submitted by March 27, 2018.

CONCLUSION

Health care professionals with pro-life views have been under attack for decades. It’s more than just not being “politically correct”; the very existence of such health care professionals threatens the appropriation of health care by groups dedicated to promoting abortion, assisted suicide and euthanasia as civil rights.

Without strong conscience rights protections like a successful Conscience and Religious Freedom Division, they will succeed in making health care termination-friendly.

But in the end, enforcement of the most basic civil right of health care professionals to provide care for patients without being required to participate in life-destroying  activities should not be determined by politics or popularity polls but by the acceptance of the universal principle of respect and protection for human life.

 

Swedish Citizen Unmasks a Main Physician-assisted Suicide Propaganda Point

Oregon, the first US state to legalize physician-assisted suicide, is routinely promoted by advocates as having the model law for assisted suicide. Now the debate has come to Sweden.

The Swedish National Council of Medical Ethics, an advisory board to the Swedish government and parliament, published a November 20, 2017 report, Assisted Death: A Knowledge Compilation” (an English translation is coming) “to promote a more fact-based debate on assisted dying” and states that the Council “does not take a stand on assisted dying in the report”.

However, Fabian Stahle, a Swedish private citizen who read the report, found a problem.

In his article “Oregon Health Authority Reveals Hidden Problems with the Oregon Assisted Suicide Model” , he notes that:

“As a basis for their reassurance of no slippery slope in the Oregon model, the authors of the Swedish report note that there is one question that is ‘the crucial issue’: is anyone with a non-terminal, chronic disease granted medical assisted death?” (Emphasis in original)

But Mr. Stahle notes that the report says elsewhere that the six-month limit on expected survival time applies, “if no treatment is given to slow down the course of the disease” (Emphasis in original)  and thus “might complicate the the whole idea that the law only applied to the ‘untreatable’ sick where nothing could be expected to extend life beyond six months”.

So Mr. Stahle says he did his own investigation by contacting the Oregon Health Authority himself.  Craig New, Research Analyst with the Oregon Health Authority  replied and told him that:

“…your interpretation is correct: The question is: should the disease be allowed to take its course, absent further treatment, is the patient likely to die within six months” (Emphasis added)

Fabian Stahle went further by asking if the doctor suggests to a eligible patient a treatment that possibly could prolong life or transform a terminal illness to a chronic illness or even cure the disease but the patient refuses, would that patient still be eligible for physician-assisted suicide.

He gave the example of a patient with a chronic disease like diabetes who refuses life-sustaining medication/treatment and becomes likely to die within 6 months and asked if that person would be eligible for assisted suicide.

Oregon’s Mr. New answered yes and that if the patient does not want treatment, that would also be their choice-along with the choice for assisted suicide.

As Fabian Stahle observes, this “allows a sanctioned path to suicide, aided by a physician, for anyone with a chronic illness who is likely to die within six months if they chose to stop treatment.” (Emphasis in original)

Fabian Stahle then asked about patients with a chronic disease whose health insurance company is not willing to pay for the treatment/medication.

Oregon’s Mr. New responded that:

“I think you could also argue that even if the treatment/medication could actually cure the disease, and the patient cannot pay for the treatment, then the disease remains incurable.” (Emphasis added)

And thus the patient is considered eligible for assisted suicide under Oregon’s law. This is especially outrageous.

THE BOTTOM LINE

Unfortunately, much of the public just accepts the Compassion and Choices propaganda that physician-assisted suicide is a safe “choice” with strict regulations for terminally and incurably ill people who are going to die soon anyway. Unfortunately, a mostly sympathetic mainstream media concurs and portrays assisted suicide as a “humane” last resort for extreme cases.

But now, Fabian Stahle, a Swedish private citizen, has done what few people do today even with such a life and death issue: He actually investigated the topic and contacted the Oregon Health Authority to clarify what “terminal” and “incurable” really legally means in Oregon’s “model” law.

Of course, there are many other problems with physician-assisted laws but Mr. Stahle focused on the one cited by the Swedish National Council of Medical Ethics as ‘the crucial issue’: is anyone with a non-terminal, chronic disease granted medical assisted death?”

Mr. Stahle is right to question this. The latest Oregon report on their assisted suicide law shows a range of diseases from cancer to undefined “other illnesses” as well as 43 people whose “ingestion status” of the prescribed overdose is unknown and obviously not followed up to see if or when they died.

Having written medical news analysis articles in the past for a national newspaper, I am appalled by the routine lack of investigative interest in life or death issues like assisted suicide from today’s mainstream media. The public needs and deserves better.

I wish Fabian Stahle was eligible for a Pulitzer Prize.

Compassion and Choices Celebrates as the Massachusetts Medical Society Becomes the 10th State Medical Association to Succumb to the Physician-assisted Suicide Agenda

In 1980, the Hemlock Society (now known as Compassion and Choices) was formed to  work for the legalization of physician-assisted suicide by proposing state legislative bills, voter initiatives and public advocacy.

These efforts failed until finally in May 1994, the Oregon Medical Association changed its position opposing physician-assisted suicide to neutrality.

Six months later, Oregon voters approved the very first US physician-assisted suicide law 51% to 49%.

Not surprisingly, now the Oregon Medical Association “supports the position that ‘death with dignity’ (aka physician-assisted suicide) is part of the doctor-patient relationship”.

Obviously, the neutrality of the medical association was a big factor in getting the first physician-assisted suicide law passed in the U.S. as well as its eventual integration into Oregon’s health care system.

Now, Compassion and Choices, the now well-funded promoter of assisted suicide and other death “choices”, is celebrating that:

“The Massachusetts Medical Society is the 10th American Medical Association chapter that has dropped its opposition to medical aid in dying and adopted a neutral stance on the practice, including nine of them in the last two years. The others are the California Medical Association in 2015, Colorado Medical Society in 2016, Maryland State Medical Society in 2016, Medical Society of the District of Columbia in 2016, Maine Medical Association in 2017, Minnesota Medical Association in 2017, Nevada State Medical Association in 2017, Oregon Medical Association in 1997 and Vermont in 2017.” (Emphasis added)

And that:

“Massachusetts’ ‘neutral engagement’ position is even better than a simply neutral position,” said Rebecca Thoman, M.D., campaign manager for Doctors for Dignity for Compassion & Choices. “It means if Massachusetts enacts a medical aid-in-dying law, the medical society will offer education and guidance to physicians who want to incorporate medical aid in dying into their practices.” (Emphasis added)

Ironically, as the Boston Globe reported in January 2017,:

“The vote before the Massachusetts Medical Society was whether to approve a survey — just a survey — of members’ attitudes toward “medical aid in dying.” …

In the end, the policy-making body decisively endorsed the survey and approved $25,000 to fund it — a sign that the Massachusetts Medical Society may be reconsidering its historic rejection of what it has called “physician-assisted suicide.’’ It comes as this movement to give terminally ill patients an option to end their life at a time of their choosing is gaining traction, propelled in part by some physicians’ groups dropping their longstanding opposition. (Emphasis added)

The surveys were ultimately sent to 25,000 doctors but only 12 to 13 percent were returned. Of those returned, approximately 60 percent of respondents wanted the medical society to rescind its opposition to physician-assisted suicide, while 40 percent wanted to keep the policy.

The most fundamental medical ethic of not killing or helping patients kill themselves must not be reduced to a popularity contest.

If this radical change in medical ethics results in the Massachusetts legislature legalizing physician-assisted suicide or by yet another voter referendum, the Compassion and Choices agenda to legalize assisted suicide throughout the U.S. will continue to accelerate to the detriment of the health care system, ethical health care providers and all medically vulnerable people.

Defending Physician-assisted Suicide

In a recent letter to the editor in the Wall Street Journal,  Dr. David Grube, national medical director of Compassion and Choices, defended physician-assisted suicide by stating:

“I knew that the people who requested it didn’t want to end their life. They loved life but realized they had an incurable, terminal disease and didn’t want to suffer needlessly as the inevitable end of life approached.

The proof is that more than one-third of terminally ill Oregonians who obtain the medication never take it, but they get great comfort in knowing they have access to it if they need it, which helps them suffer less.” (Emphasis added)

Is this really the crucial argument to upend our medical and legal ethics to legalize physician-assisted suicide?

Especially when more than 33% of people approved for assisted suicide don’t use the lethal overdose prescriptions, this should be a wake-up call for assisted suicide activists as well as suicide prevention groups and the rest of society.

As a former oncology (cancer) and hospice nurse who cared for many terminally ill patients including relatives over decades, I encouraged my patients and family members to talk about all their concerns. I found very few who wanted to end their lives out of fear of future suffering. I  reassured my patients and relatives that we would make them as comfortable as possible and support them until their natural death. Not one died by suicide and all died with true dignity.

But this was before physician-assisted suicide began to be legalized, glamorized and  promoted by activists, especially through sympathetic media outlets.

WHERE IS THE FOLLOW UP ON THE PATIENTS WHO DON’T TAKE THE LETHAL OVERDOSE?

What happened to these patients who decided not to take the lethal overdose? Did they unexpectedly improve or find their symptoms adequately treated? Was the terminal diagnosis wrong? Did they find the physical, emotional and spiritual support to continue living?

Unfortunately, those writing state assisted suicide reports are apparently not interested in this important information that could help save other lives.

WHAT HAPPENS TO THE UNUSED LETHAL OVERDOSE?

Another concern is what happens to the lethal overdose that the patient does not take?

In any home health situation, every unused dose of a controlled medication must be accounted for and disposed of carefully. We know how important it is to keep such medication out of a child’s reach or from misuse by a family member or friend. Keeping overdoses for possible future ingestion is obviously dangerous, especially when our nation is in the middle of an opioid crisis that now kills almost 100 Americans every day.

However when it comes to unused lethal overdoses in assisted suicide, Death with Dignity’s advice is that:

“Anyone who chooses not to ingest a prescribed dose or anyone in possession of any portion of the unused dose must dispose of the dose in a legal manner as determined by the federal Drug Enforcement Agency or their state laws, if any.”

CONCLUSION

When even assisted suicide supporters admit data suggests that the “distress prompting patients to request these lethal medications primarily stems from their fear over losing control at the end of life” but claim that the more than 33% who don’t take the prescribed lethal overdose should still have it to supposedly “get great comfort in knowing they have access to it if they need it”,  physician-assisted suicide is further exposed as a terrible response to human fear and despair.

As our National Association of Pro-life Nurses states, patients need us to take their hands, not their lives.

 

Can There Really Be a “Safer” Physician-assisted Suicide?

In August, I wrote a blog “Physician-assisted Suicide and the Palliative Care Physician”  about Dr. Jessica Nutik Zitter,  a palliative care doctor in California who approved of physician-assisted suicide, would want it for herself but had still had serious some qualms about actually writing for the lethal overdose herself.

In the end, Dr. Zitter decides that assisted suicide can be rendered “safe” by being rare and practiced by specially trained medical practitioners as “just one tool in the toolbox of caring for the dying-a tool of last resort.”

Thus, Dr. Zitter, perhaps unknowingly, gives support to the Compassion and Choices goal of “normalizing” and “integrating” physician-assisted suicide into standard medical practice. Note  their own description of their activities:

“We help clients with advance directives, local service referrals and pain and symptom management. We offer information on self-determined dying when appropriate and provide emotional support through a difficult time. We employ educational training programs, media outreach and online and print publications to change healthcare practice, inform policy-makers, influence public opinion and empower individuals. Compassion & Choices devotes itself to creative legal and legislative initiatives to secure comprehensive and compassionate options at the end of life.” (Emphasis added)

Now in her new article “De-Medicalizing Death”, Dr. Zitter is excited about a new University of California, Los Angeles (UCLA) Health Centers’ program where “only” 25% of patients went on to commit physician-assisted suicide after an “intake process…conducted by trained psychotherapists (psychologists and clinical social workers) instead of physicians”.

Ironically, current physician-assisted suicide laws tout the “safeguard” that “If, in the opinion of the attending physician or the consulting physician, a patient may be suffering from a psychiatric or psychological disorder or depression causing impaired judgment, either physician shall refer the patient for counseling.” (Emphasis added),  But that only means evaluating a patient’s competence, not the diagnosable mental disorders that afflict more than 90 percent of people who die by suicide, is required. Thus, it should not be surprising that only 3.8% of people using physician-assisted suicide in Oregon were even referred for psychiatric evaluation in 2016, unlike the standard of care for other suicidal people.

Also, the UCLA new intake process for physician-assisted suicide that so excites Dr. Zitter paradoxically undermines the common media depiction of a terminally ill person in unbearable pain desperate for immediate relief:

“The intake consisted of an extensive set of questionnaires designed to assess all possible sources of distress. Any patient with physical or psychiatric needs was referred on to the appropriate services. But as the UCLA committee expected, most of what patients needed was to discuss their feelings about their approaching death and process their grief and sense of loss. This mirrors data from the entire state of California as well as Oregon, which suggest that the distress prompting patients to request these lethal medications primarily stems from their fear over losing control at the end of life. It is not, as many may think, due primarily to physical suffering.” (Emphasis added)

And

“Anne Coscarelli, psychologist and founding director of the Simms/Mann–UCLA Center for Integrative Oncology, described the conversations that came from this intake process as revelatory and comforting for the patients. Several patients ultimately completed legacy projects, such as video or written messages and stories, for their children and grandchildren. This invitation to talk, which opens up a discussion that most of us are taught to avoid, turned out to be a game-changer”. (Emphasis added)

And, I would add, this “game-changer” ultimately resulted in most patients NOT dying by assisted suicide.

As a former hospice and oncology nurse, this kind of listening and support is very familiar to me. We gave our patients such care along with symptom control and our patients died with real dignity with their families supported as well.

Personally, I was never even once tempted to help end any of my patients’ lives.

CONCLUSION

Dr. Zitter is like many people. The idea of controlling one’s own death or avoiding watching a loved one slowly die is very seductive. But, as Dr. Zitter has unwittingly discovered, suicide is the loneliest kind of death and very amenable to intervention.

On the other hand, the legalization and approval of physician-assisted suicide reinforces the underlying despair that leads even many healthy people to think death is the solution to their problems.

When “Losing autonomy” and “Less able to engage in activities making life enjoyable” are the top two end of life concerns of Oregon’s assisted suicide victims in 2016, we have a bigger societal problem than an alleged lack of enough lethal overdose prescriptions.

We need true caring and support, not abandonment to suicide of any kind.

Don’t Tell John McCain to Fight His Cancer?

Arthur Caplan, PhD is an influential ethicist who recently wrote a Medscape (password protected) article titled “Don’t Tell John McCain to Fight his Cancer after the news broke about Sen. McCain’s brain cancer and many of his colleagues and others encouraged him to fight hard against his cancer.

Caplan does acknowledge that the these people mean well but writes:

“Cancer could not care less whether you are a fighter or not. What evidence there is does not show that adopting a fighting stance helps in terms of survival. I have seen many fighters die of cancer, and some who chose not to be seen as fighters live longer than others who did.

And there is an implication that if you are not a fighter, then you must be a coward or worse. This suggests that the only option available to anyone who is courageous is to choose to fight—to utilize every surgery, complementary medicine, chemotherapy, and experimental option.”

Senator McCain has a glioblastoma, which Caplan calls “a very nasty brain cancer” where the “odds of beating this cancer are long.” Caplan says the senator is brave “however he chooses to treat it or not”.

But as you might remember, this is the same cancer that Brittany Maynard, a young newlywed, had when her scheduled physician-assisted suicide was heavily publicized in 2014 to raise money for Compassion and Choices’ campaign to legalize assisted suicide throughout the US.

Unfortunately, Ms. Maynard’s case also made ethicist Caplan an outspoken supporter for legalizing physician-assisted suicide in the US-the ultimate surrender to illness-because of allegedly strong state regulations that he believes would not lead to the shockingly expansive legal assisted suicide/euthanasia situations in Holland and Belgium.

(Ironically and a few months after Ms. Maynard’s assisted suicide, CBS’ “60 Minutes” TV show aired a segment on a promising new experimental treatment for glioblastoma  that appeared to eliminate the cancer without destroying brain tissue in some patients. Ms. Maynard was not mentioned.)

DEALING WITH A DISMAL CANCER PROGNOSIS

For several years in the 1980s and 90s, I worked in oncology (cancer) and hospice with patients both in the hospital and in their homes.  Over the years, I also personally cared for several relatives and friends who had cancer.

Here are two stories, one about a friend and the other about a relative. One chose to try to beat her cancer and the other decided against aggressive treatment.

A friend in her 60s I will call “Carol” started coughing constantly a few years ago and saw a doctor who diagnosed a widespread lung cancer with a poor prognosis. Carol decided to try as hard as possible to beat the cancer. Friends and family were invaluable in getting her through a tough time with surgery, chemo and radiation. At one point, she was in very rough shape and we all were worried.

But against all predictions, Carol is now hale and hearty with a cancer that is in remission. She enjoys traveling all over the US, visiting family and friends. She seems to have more energy than the rest of us do. Carol remains realistic about the possibility of her cancer returning but is living her life to the fullest day by day.

I also had an older aunt diagnosed with terminal pancreatic cancer in 2000. She refused the extensive surgery option because of the low rate of success and difficulty. Back then, the chemo option offered had only a 20% chance of remission and the side effects could be severe.

She decided against both options to live in her own home with help from us and hospice for several months until a week before her death when she needed 24 hour care. Although always a quiet person before her cancer diagnosis, my aunt found great satisfaction in sharing her story and serving as an inspiration to others. Her eventual death was peaceful.

Both of these women made informed decisions and each “fought” cancer in their own way. I salute them both.

CONCLUSION

Ethicist Caplan has a point when he states that “Cancer could not care less whether you are a fighter or not”. People should never feel guilty or worried that they didn’t fight hard enough when they face death from cancer. But neither should they feel discouraged from trying to prevail over their cancer.

A realistically hopeful attitude for a good life whatever the length of time, especially along with support from others, can turn a tough situation into a life newly appreciated and well-lived whatever the final outcome of a cancer diagnosis.