palliative care

Strange Bedfellows: The Psychedelic Movement and Assisted Suicide

nancyvalko assisted suicide, Drugs, end-of-life, law, medical ethics, palliative care

Kathryn Tucker is an influential lawyer and director of the pro-assisted suicide organization called the End of Life Liberty Project, described as “the leading advocacy organization using litigation as a tool to expand end-of-life liberty”. Back in January, 2017 I wrote about Ms. Tucker’s criticism of the so-called “safeguards” in assisted suicide laws as “burdens and restrictions”.

Now in a April 12, 2019 article for Chacruna Institute for Psychedelic Plant Medicines  titled “Can the Psychedelic Movement Learn from the Movement for End of Life Liberty?”, Ms. Tucker explains how the effort to legalize the psychedelic drug Psilocybin (better known as “magic mushrooms”) can learn from the techniques of the assisted suicide movement.

Currently, there is an effort in Oregon (the first state to legalize assisted suicide) for a “2020 ballot initiative to legalize psilocybin therapy” and a Denver, Colorado (another assisted suicide state) initiative to decriminalize psilocybin use and possession by adults has just now narrowly passed.

WHAT IS PSILOCYBIN (“MAGIC MUSHROOMS”)?

According to the website drugs.com, so-called “magic mushrooms” contain chemical compounds obtained from certain types of dried or fresh mushrooms that are similar to LSD and “abused for their hallucinogenic and euphoric effects”.  Drugs.com also states that:

“The psychological reaction to psilocybin use include visual and auditory hallucinations and an inability to discern fantasy from reality. Panic reactions and psychosis also may occur, particularly if large doses of psilocybin are ingested.” (Emphasis added)

Because of special waivers from the US FDA (Food and Drug Administration), some small studies of cancer patients have shown benefits with small doses for anxiety and depression.

STRATEGIES

Ms. Tucker insists that the 1997 US Supreme Court case Vacco v Quill found a right  “of dying patients having access to as much pain medication as they need to get relief, even if it advances their time of death”.  (Emphasis added) However, Ms. Tucker neglects to mention that the Supreme Court ruled-unanimously-that there was no constitutional right to physician-assisted suicide.

She maintains that:

“Law and medicine already allow dying Oregonians access to controlled substances to eradicate consciousness (palliative sedation) and to advance the time of death (AID) (Aid in Dying, aka physician-assisted suicide). Surely law and medicine ought to allow access to controlled substances to alter and elevate consciousness.” (Emphasis added)

Tellingly Ms. Tucker writes about psychedelics:

“An authorization for medicinal use, allowing sick patients access to this medicine, appears the easiest first step in changing the law. Other medicinal uses are also compelling, including treatment of PTSD and depression. Focusing on medicinal use avoids attacks from those opposed to recreational or social drug use. It opens the door to societal familiarity with, and appreciation of, the benefits of psychedelics; this can lead to future expansion of access outside the medical realm.” (Emphasis added)

Because psychedelic drugs are not legal under current law and would need changes in the federal Controlled Substances Act, Ms. Tucker writes that various state efforts are instead emerging to change their state laws-just as Oregon did with assisted suicide after the 1997 Supreme Court case.

Ms. Tucker writes that one lesson the assisted suicide movement learned was that changing state laws can take multiple efforts. She writes that failed efforts to pass assisted suicide by ballot initiative in California and Washington state led to a tailoring of the text of such initiatives to get it passed by voters.

CHOOSE A STATE THAT ALREADY HAS PHYSICIAN-ASSISTED SUICIDE LAW

Ms Tucker says that using a state that already has an assisted suicide law would be strategic and would emphasize “the need to ensure that eligible patients would be provided with good palliative care to ensure that no patient would choose to precipitate death due to inadequate palliative care.” (Emphasis added)

She suggest that states like Hawaii might be the best test state because it has a unique provision to allow terminally ill patients to access undefined “remedial agents” as well as assisted suicide.

CONCLUSION

We often speak of the “slippery slope” of dangerous proposals that ultimately expand far beyond their initial enactment into law. We must recognize that this “slope” is planned and incremental, as Ms. Tucker makes clear.

With euthanasia, it started in 1938 with multiple failed legalization attempts by the Euthanasia Society of America. The concept finally gained traction after lawyer Luis Kutner’s 1969 law journal article “Due Process of Euthanasia: The Living Will, a Proposal”. After the well-publicized 1976 Karen Quinlan case, “living wills” and the “right to die” then were successfully sold to the public as the right of people to refuse extraordinary medical treatment when they are imminently dying or in a so-called “vegetative state”. Soon afterwards came the idea of legally removing feeding tubes from people who were also seriously brain-injured but not dying. This eventually led to several states legalizing physician-assisted suicide for the terminally ill expected to die within 6 months.

Now we are seeing, as in a (thankfully failed) recent bill in New Mexico,  further attempts to change the definition of terminal illness to expected death in the “forseeable future”,  non-physicians able to prescribe assisted suicide, inclusion of people with mental health disorders, approval by “telemedicine” and no state residency requirement.

As Ms Tucker makes clear in this article, the most important lesson for legalization of any formerly outrageous concept is to never give up.

But never giving up is also a strategy that we in the pro-life movement have already learned.

When Palliative Care goes Horribly Wrong

nancyvalko assisted suicide, Compassion & Choices, euthanasia, law, medical ethics, palliative care

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 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.

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

nancyvalko assisted suicide, Compassion & Choices, education, food and water, hospice, law, medical ethics, palliative care, ventilators/life support

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?”

Alfie Evans and the Shocking UK Gosport Independent Panel Report

nancyvalko end-of-life, food and water, futility, law, medical ethics, nursing, palliative care, terninal/palliative sedation

The Baby Alfie Evans’s case this year shocked the world but now we learn his forced death against his parents’ wishes follows a legal and healthcare nightmare in the UK.

Some of us expressed concerns years ago about the UK’s “Liverpool Care Pathway” developed in the 1990s to improve care of the dying by applying “the high standard of palliative care prevalent in hospices to other clinical settings”.  But the “Liverpool Care Pathway” went horribly wrong and in 2009, the UK Daily Mail published an article “Euthanasia by the back door: Hospitals ‘death pathway’ is open to error” with cases of non-dying patients considered “not worth saving” who died from the “combination of dehydration and powerful painkillers”, explaining that:

“Under the Liverpool Care Pathway, doctors can withdraw fluids and drugs from patients if they are deemed close to death. Many are then put on continuous sedation so they die free of pain.

But sedation can often mask signs of improvement, meaning doctors may be closing the door on people who would otherwise live for months.”

In 2013, the British Journal of General Practice published “The Liverpool Care Pathway for the dying: what went wrong?” . The authors acknowledged the problems that led an independent review to call for an end to the Liverpool Care Pathway but concluded that:

“(a)vacuum left by the abolition of the LCP makes a return to the ‘bad old days’ of poor or non-existent communication about dying a real possibility: we would argue that the response to poor use should be right use, not non-use” and  called for “increased funding and training in palliative care and suggest that skills in end-of-life care should become a required competency for all health care professionals.” (Emphasis added)

THE GOSPORT INDEPENDENT PANEL REPORT

More details of this scandal have just now surfaced in a report on the Gosport War Memorial Hospital  where patients were often admitted for rehabilitation or respite care. The report concludes that at least 450 patients had their lives “shortened” by denial of food and water along with powerful painkillers between 1989 and 2000. It details cases and concerns and ultimately acknowledges the families’ years-long pleas for the truth. Here is one excerpt:

“Those (nurses) who raise concerns about the conduct and practice of colleagues are now widely known as ‘whistle-blowers’. To put it into context, it is generally agreed that the NHS (National Health Service) has not been good at protecting people who take such a difficult step; as the documents make clear, the events of 1991 were no exception. Nor should the consequences for whistle-blowers be underestimated: these commonly included disciplinary action and undermining of professional credibility.”

“The documents show that, following a complaint to the Trust in 1998 and the police investigation, it should have become clear to local NHS organisations that there was a serious problem with services at the hospital. Although the successive police investigations undoubtedly complicated the NHS response, it is nevertheless remarkable that at no stage was there a public admission of failure or any public apology. Nor was there a proportionate clinical investigation into what had happened. On the contrary, the documents show numerous instances of defensiveness and denial – to families, to the public and the media, and to health service and other organisations.” (Emphasis added)

CONCLUSION

Will charges now be brought against those involved in the Gosport War Memorial Hospital euthanasia deaths? Who knows? The Independent Panel only concluded that:

“With this Report and an online archive of documentation, the Panel has completed its Terms of Reference. The Panel now calls upon the Secretary of State for Health and Social Care and the relevant investigative authorities to recognise the significance of what is revealed by the documentation in this Report and to act accordingly.”

But just as important is the question “Has health care now improved?”

Unfortunately, the answer may be no.

As the UK Telegraph reported in 2015 in the article “New NHS (National Health Service) death guidelines ‘worse than Liverpool Care Pathway’”, the Liverpool Care Pathway was supposedly phased out in 2014 in favor of the National Institute of Health and Care Excellence (NICE) guidelines. but families were still reporting poor end of life care, including denial of food and water.

And now, unlike that Liverpool Care Pathway horrors that were hidden for so long, we had the very public case of Baby Alfie Evans this year where courts enforced the doctors’ decision to shorten his life by removing his ventilator, refused his family’s requests to transfer him or take him home and even take away his feedings when he continued to breathe for days after the ventilator was removed.

Apparently, the death culture is apparently very hard to kill in the UK and, as we are finding, also in the US.

Good News/Bad News about Alzheimer’s

nancyvalko advance directives, Alzheimer's, assisted suicide, Compassion & Choices, dementia, food and water, medical ethics, palliative care

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!

Surprising Twist to a Good News Story You May Have Seen

nancyvalko assisted suicide, Cancer, medical ethics, palliative care

TV and social media are reporting a wonderful story about Dr. Eric Voigt and Nicole McGuinness. Dr. Voigt, an ENT physician, was watching the “Beachfront Bargain Hunt” TV show (one of my own semi-guilty pleasures) when he noticed that a woman on the show named Nicole McGuiness seemed to have a suspicious lump in her neck. Alarmed, Dr. Voigt turned to Facebook find her and urge her to get the lump checked. Nicole had her lump checked and it was thyroid cancer. She will be starting treatment soon and is very grateful to Dr. Voigt for his sharp eye.

However, this story has a surprising twist.

Nicole was diagnosed in December 2015 with a glioblastoma cancer in her brain at age 29 and was successfully treated and doing well after almost 3 years.

Ironically, Brittany Maynard was also 29 and had a glioblastoma brain cancer when she decided to move from California to Oregon, a state that legalized assisted suicide in 1997. She and her family moved to Oregon so that Brittany could commit physician-assisted suicide before her symptoms became more severe. The date she chose was November 1, 2014. Brittany also agreed to help Compassion and Choices (the former Hemlock Society) use her story to raise funds with the goal of legalizing physician-assisted suicide throughout the US.

After weeks of widespread and sympathetic media coverage, Brittany did take a doctor-prescribed lethal overdose on her planned date.

Ironically and 5 months later, CBS’s TV show “60 Minutes” reported on an innovative treatment for glioblastoma brain cancer . And, as I wrote in my blog “Could Brittany Maynard Have Been Saved?”, this innovative treatment was granted breakthrough status by the FDA in 2016.

No one will never know if Brittany could have been one of the people this treatment could help.

CALIFORNIA AND PHYSICIAN-ASSISTED SUICIDE

The first target state for Compassion and Choices’ campaign for legalizing assisted suicide after Brittany’s assisted suicide was her home state of California. Both Brittany’s mother and husband went to California to support a physician-assisted suicide bill. Although the bill apparently died in committee, Governor Jerry Brown called a special legislative session to deal with healthcare spending where the assisted suicide bill was resurrected and passed. Governor Brown then signed it into law in October, 2015. Over 100 people died by assisted suicide in the first six months after the law took effect.

However just last month, a California judge overturned the law stating that the California Legislature violated the law by passing it outside of the scope of health care spending which was given as the reason for a special session and thus was unconstitutional.

This decision was quickly appealed by the California attorney general to the Fourth Circuit Court of Appeals who upheld the judge’s decision.

Now Compassion and Choices has filed an appeal on behalf of a palliative care doctor and two terminally ill patients in California to get California’s law back into law.

Stay tuned for further developments.

CONCLUSION

As a former oncology and hospice nurse, I pray that Nicole has a speedy recovery from her thyroid cancer and I am still saddened by Brittany’s assisted suicide but assisted suicide is not a remedy for cancer.

I remember when just a few decades ago, AIDS was the poster disease for legalizing assisted suicide. Then it became terminal cancer after AIDS became treatable. Now the scary poster disease is Alzheimer’s.

And that’s how the slippery slope works.

Instead, we need realistic hope and real support for people and their families dealing with difficult situations rather than just offering the “solution” of death.

 

 

Physician-assisted Suicide and the Palliative Care Physician

nancyvalko assisted suicide, law, medical ethics, palliative care

 

“SHOULD I HELP MY PATIENTS DIE?”

This is the title of an August 5 op-ed in the New York Times by Dr. Jessica Nutik Zitter, an ICU and palliative medicine specialist in California who speaks and writes extensively on end of life care.

Dr. Zitter writes that she felt uncomfortable when first asked to help with a patient who wanted assisted suicide under the new California law and first polled 10 palliative care colleagues and found that they were also uncomfortable:

“It wasn’t necessarily that we disapproved, but we didn’t want to automatically become the go-to people on this very complex issue, either.”

Dr. Zitter then saw the patient, a man in his early 60s with a terminal illness in “no obvious (physical) distress” who felt abandoned by his sister and said he wanted to die because “I’m just sick of living” and “fed up with my lousy life.”

Even though the man met the legal criteria for assisted suicide, Dr. Zitter was relieved when he agreed to a 4 week course of antidepressant medication and follow up with his primary doctor. She later learned that the man died without assisted suicide 3 months later.

But despite escaping responsibility for a death in this case, Dr. Zitter admits:

“I want this (assisted suicide) option available to me and my family. I have seen much suffering around death. In my experience, most of the pain can be managed by expert care teams focusing on symptom management and family support. But not all. My mother is profoundly claustrophobic. I can imagine her terror if she were to develop Lou Gehrig’s disease, which progressively immobilizes patients while their cognitive faculties remain largely intact. For my mother, this would be a fate worse than death.” (Emphasis added)

Dr. Zitter then decided to get help sorting out her support for assisted suicide and reservations about personally participating by contacting Dr. Lonnie Shavelson.

Dr. Zitter was impressed with Dr. Shavelson who allegedly performs a “time-consuming” assessment of the patient’s medical illness, mental and emotional state and family dynamics. Dr. Zitter was also impressed that he claims does not offer the lethal medications to most of the patients who request them because of concerns like coercion, that they would live longer than 6 months, or were experiencing severe depression.

Ironically, this is the same Dr. Shavelson I wrote about last year in my blog “Tolerating Evil”  after San Francisco’s Mercury News did an article on him on June 6, 2016.

As I wrote then:

“Dr. Lonnie Shavelson, 64 and a long-time supporter of assisted suicide, was an emergency room doctor for 29 year and then spend 7 years at an Oakland clinic for immigrants and refugees before taking a 2 year break.

His new assisted suicide business could be quite lucrative. Although Medicare will not pay for assisted suicide costs, Shavelson says he will charge $200 for an initial patient evaluation. If the patient is deemed qualified under California law, Shavelson said he would charge another $1800 for more visits, evaluations and legal forms.”

At that time, Dr. Shavelson defended his business by claiming that “the demand (for assisted suicide) is so high, that the only compassionate thing to do would be to bring it above ground and regulate it.”

Finally, Dr. Zitter called palliative care colleagues around the state and was heartened by the mostly positive responses to participating in the assisted suicide law. Dr. Meredith Heller, director of inpatient palliative services at Kaiser Permanente San Francisco told Dr. Zitter that “Surprisingly, the vast majority of cases here have gone smoothly.” (Emphasis added)

But rather than worrying about the cases that don’t go smoothly, Dr. Zitter’s concerns now are primarily about shaping policies and protocols “to account for the nuanced social, legal and ethical questions that will continue to arise” and training “the clinicians who are best qualified and most willing to do this work and then train them appropriately”. She is also concerned about the problems with reimbursement for such assisted suicide “services”, especially for the poor.

CONCLUSION

When I started working in hospice many years ago, I loved it. When palliative care was introduced for symptom control, I cheered it.

But as time wore on, I became alarmed and left when I saw the efforts to change the traditional hospice philosophy from never causing or hastening death to just “choice”.

Dr. Zitter seems to be a compassionate physician who really doesn’t want to be involved in physician-assisted suicide herself but ultimately feels compelled to support it because it is California law and because she might want assisted suicide for herself or her claustrophobic mother in some possible future scenario.

Dr. Zitter apparently tries to reassure herself-and thus the public-that assisted suicide can be “safe” by being rare and practiced by specially trained medical practitioners.

However, when the most basic medical  ethics principle of never killing  patients is eliminated, the foundation of medicine itself crumbles. Medical professionals become little more than highly trained technicians compelled to follow any new law or policy regardless of its detrimental impact on their patients, society or themselves.

In the end, assisted suicide cannot be regulated or carefully practiced into a “safe” medical procedure. The only way to thwart the expansion and consequences of assisted suicide is to prevent or end its legalization.

 

 

An Interview with an Assisted Suicide Doctor

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It’s not often that we get a glimpse into the assisted suicide movement from the perspective of a medical professional who actually participates in terminating the lives of the terminally ill. Most seem to prefer anonymity.

But in a fascinating American Society of Clinical Oncology Post interview “Examining the Impact of ‘Death With Dignity’ Legislation”, oncologist Charles D. Blanke MD, FACP, FASCO talked not only about his recent medical journal article “Usage of Oregon’s Death with Dignity Act” but also his surprises and concerns about the almost 20 year old Oregon law.

‘SURPRISING FINDINGS”

When Dr. Blanke was asked if anything had surprised him about the findings in his article, he replied

“I was a bit surprised by how rarely the prescribing or consulting physicians refer patients for a psychiatric consultation. According to our study, only 5% of patients received these referrals. In national surveys, many psychiatrists say that depression among terminally ill patients would disqualify them from participating in physician-aided death.

I was also surprised to learn how rarely a physician is present when the patient takes the medication—in only 17% of cases is that so. My guess is that physicians aren’t asking what their patients would prefer, because when I’ve asked my patients if they would like me to be present when they take the medication, 100% say “yes. (Emphasis added)

When asked about the spike in the numbers of lethal prescription in the last two years of his study,  Dr. Blanke replied that:

“There are several factors, including greater national awareness of this issue and the fact that there are several other states now with this legislation in place. Also, some of the medical societies that formerly opposed the law, such as the American Medical Association, have softened their stance and agreed to study whether they should be neutral on physician-assisted death.” (Emphasis added)

Note: Actually, the AMA has not officially changed it opposition to physician-assisted suicide although assisted suicide supporters hope for this. However, the American Society of Clinical Oncology has taken no official position on physician-assisted suicide, which is actual neutrality.

PALLIATIVE CARE, INFORMED CONSENT AND CONSCIENCE RIGHTS

Sadly, while Dr. Blanke says he is a big supporter of palliative care, he went on to also state:

“However, I strongly feel that there are some patients you simply cannot palliate. They have concerns about their quality of life and their ability to do the things they enjoy, they are suffering relentlessly, and they want to take back some control over their life. Physician-aided death not only doesn’t cause harm, in my estimation, it can give people that extra bit of control over their life, including the 33% of patients who fill the prescription but never take it. Just having the prescription on hand gives patients an immense feeling of control and comfort. (Emphasis added)

On informed consent, Dr. Blanke does acknowledge that:

“There certainly is worry that a family member might push the medication on a patient because of financial concerns, but that scenario is harder to measure. Rarely, you do get a sense that there may be some outside pressure on patients to take the medication” (Emphasis added)

Instead, Dr. Blanke says that in his experience, it usually is the patient who wants the lethal overdose and the family members who oppose it.  Ironically, assisted suicide laws do not require even notification of family members-at least until after death.

And on conscience rights for those medical professionals who refuse to participate or refer, Dr. Blanke  states that:

“Physicians have an ethical obligation—not to offer the option, if they are personally opposed to it—but to understand what the process entails, to be knowledgeable enough to explain to patients the pros and cons of their decision, and to refer them to a physician if they still want to pursue physician-assisted death….Sticking your head in the sand and refusing to take part at all during this critical time in a patient’s care does a huge disservice to that patient.” (Emphasis added)

Yet, responding to a question on the ethical or moral dilemmas assisted suicide laws pose for oncologists, Dr. Blanke states:

“We have patients who are suffering horribly, and we are helping to end their suffering, so I don’t see how that can be construed as harming our patients.

However, physicians are also faced with the reality of giving a patient a medication that is guaranteed to kill that patient, and regardless of your position on these laws, taking that action is very challenging for any human being, let alone a physician. ” (Emphasis added)

 

CONCLUSION

Over the years, I have seen some of my health care colleagues-like the general public-begin to tentatively approve assisted suicide in the usual polling question about a hypothetical case in which a person is terminally ill and in “unbearable pain”. (Ironically, Oregon’s law does not even mention “pain” or “suffering” as a necessary criteria to be approved  for assisted suicide.)

But I found there are very few fellow professionals who are actually willing to perform or even witness such a death. This is apparently why Compassion and Choices, the former Hemlock Society, also needs to provide help in finding doctors to write lethal prescriptions.

We must realize that there are no winners when assisted suicide is legalized-not the patient, the health care system, society or even the assisted suicide practitioner.

Arguing Life, Death and Assisted Suicide

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In the article “Sides discuss NY proposal for aid in dying”, the exchange between Diane Coleman, a founder of Not Dead Yet, the foremost disability organization fighting physician-assisted suicide, and  Dr Timothy Quill, who fought for the constitutionality of physician-assisted suicide in the landmark 1997 US Supreme Court Vacco v Quill decision, is very enlightening.

Diane Coleman of Not Dead Yet spoke simply and eloquently:

“I don’t think I speak for all (opponents), but the disability community’s core message is that if assisted suicide is legal, some people’s lives will be lost due to mistakes, coercion and abuse, and that’s an outcome that can never be undone.

There is inherent discrimination in assisted-suicide laws. Most suicidal people receive suicide prevention. Assisted suicide laws would carve out an exception to that, and that exception would apply to people who are elderly, ill, disabled, and those are devalued groups in society. … Assisted-suicide laws would say, ‘these certain people, we not only agree with their suicide but give them the means to carry it out.’ We’re saying it comes down to social justice. Equal rights means equal suicide prevention.”

And

“It’s really not about physical pain. If you look at Oregon reports, about reasons people want to commit suicide, the reasons are things like feeling like the person has lost their autonomy, they’ve lost their dignity, they can’t do the things they used to do. They feel like a burden on their families. Those are psychosocial reasons that relate to the disability that people have when they have an advanced stage or chronic condition.”

On the other hand, Dr. Quill portrayed assisted suicide as little more than a benign discussion:

“Whether or not this practice is legalized, seriously ill patients are asking us to talk about it, they’re asking us to consider it” said Quill, founding director of the palliative care program at URMC and a board-certified palliative care consultant. (Emphasis added)

But to the question “Why do people with a terminal illness want to end their lives?”, Dr. Quill telling states:

“Some of it has to do with severe symptoms. I would say that’s not the majority. The majority is people who are tired of dying. It’s going on way too long for them. The kind of debility and weakness that accompany it, particularly for people that are used to being in charge of their lives, is very, very, very hard. Some of those people want to talk about what options they have to accelerate the process.” (Emphasis added)

This is very different from the way physician-assisted suicide has been sold to the public as a necessary last resort for terminally ill people in “unbearable pain”. However, as a 2014 article  “Dignity, Death, and Dilemmas: A Study of Washington Hospices and Physician-Assisted Death” admits, pain is not even a requirement for receiving physician-assisted suicide  in Oregon and Washington state:

The authorizing legal statutes in both states make no reference to the experience of severe pain or intolerable suffering as an indication for a patient to make a request for physician-assisted death but rely entirely on the entitlement due a patient in respect of their personal dignity. A patient rights framework provides the primary moral structure… (Emphasis added)

Thus, physician-assisted suicide is really about power and control over death, not the  suffering of the individual. And it is this power and control that has led European countries like the Netherlands to expand physician-assisted suicide even to non-terminally ill people who cannot or have not made the death decision themselves such as babies with deformities and people with dementia, mental illness or other impairments.

Closer to the US, the Canadian Supreme Court  has legalized physician-assisted suicide but still  without formalized rules, even on conscience rights.  In the province of Quebec, legal injection euthanasia kits  can be distributed to any doctor who wants them.

The Assisted Suicide Agenda in the US

It is alarming that the influential American Academy of Hospice and Palliative Medicine that had this same Dr. Timothy Quill in the article as a recent past president and honoree of their Visionary award. But it should not be surprising that the AAHPM has changed its former position of opposition to physician-assisted suicide to a position of “studied neutrality” towards what it now calls “physician-assisted death”.  Neutrality is progress to physician-assisted suicide activists like Dr. Quill and organizations like Compassion and Choices that need to neutralize medical opposition as much as possible while quietly setting up relentless campaigns to legalize assisted suicide in every state. If enough states give in, a new Supreme Court decision may even overturn the Vacco v Quill decision and legalize physician-assisted suicide throughout the US.

But in the meantime, trying to sell “neutrality” to doctors and convincing the media to change the term “physician-assisted suicide” to  “physician-assisted death” cannot mask the inevitable and lethal damage done not only to individuals but also to our medical and legal institutions that can no longer ensure ethical protection for our lives.

Why California’s Governor Brown is Wrong About Physician-assisted Suicide For “Excruciating Pain”

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When California Governor Jerry Brown signed the physician-assisted suicide law, he wrote

“In the end, I was left to reflect on what I would want in the face of my own death,” the governor wrote. “I do not know what I would do if I were dying in prolonged and excruciating pain. I am certain, however, that it would be a comfort to be able to consider the options afforded by this bill. And I wouldn’t deny that right to others.”

Gov. Brown apparently believes the two myths promulgated by pro-assisted suicide organizations and most mainstream media about physician-assisted suicide: 1. Unbearable pain is routine in terminal illnesses and often cannot be relieved. 2. Unbearable pain is the reason people choose physician-assisted suicide.

As a former hospice, oncology, trauma, and critical care nurse, I made sure my patients had the best pain control possible after one unforgettable incident that happened shortly after I graduated from nursing school.

In 1969, I cared for a 32-year old woman I will call “Joan” who was dying from cancer. Joan looked emaciated with her skin  stretching over her bones and she was in terrible pain. Joan’s pain was so intense at times that she even talked about wanting us to kill her. At the time she was on a relatively small dose of Demerol given by an intramuscular shot every 4 hours as needed for pain.

I gave her the shot, wincing as I injected it into her shrunken buttock but the shot did nothing for her pain. I went to my head nurse who said to repeat the injection in four hours but  “Joan” continued to have intense pain.

I reported this to my head nurse and Joan’s doctor, suggesting that the dose be increased and/or given more often. The doctor told me no because he said he did not want her to “become addicted” to pain meds. I couldn’t believe my ears. I told him that she was imminently dying, even asking us about killing her to relieve the pain. Joan didn’t have to worry about addiction. I knew that from nursing school. The doctor still refused.

I went over his head to the chief of staff and the assistant director of nursing to plead for Joan. Instead, I was told that if I gave Joan her shot even 15 minutes earlier than the 4 hours, I would be fired.

I was frustrated to the point of tears but I knew there was one thing I could do.

I spent the last two days of Joan’s life with her as much as possible while working my shifts. After my shifts, I would sit with her for hours telling her stories, stroking her back, and doing whatever I could to distract her from the pain until she finally fell asleep. I would not abandon her.

After Joan died, I decided to learn everything I could about pain relief so that I could rebut a future ignorant doctor and help my patients. And I did. I studied every article on pain relief that I could find and talked to experts in the field as well as experienced colleagues. I’m still doing this 46 years later.

I never again had a patient die with severe pain.

For example and 20 years later, I started working on an oncology (cancer) floor in honor of my mother who I cared for until she died  from cancer and Alzheimer’s disease. As I promised my father, I made sure she was comfortable and Mom was even alert and in good spirits at the end.

I loved my new job in oncology but one day I came in hearing a woman down the hall screaming. That was unusual on our floor. It turned out that this woman I’ll call “Kim” was also a 32-year old woman with terminal cancer.

Kim’s pain had been under good control at home with long-acting morphine pills supplemented with fast acting morphine pills to relieve breakthrough pain. However, her family mistakenly thought that since her pain was relieved, she did not need to take her long-acting pills. Kim agreed but the result over a short time was terrible pain unrelieved by slowly increasing a morphine drip.

Working with the doctor, I came up with an overnight game plan to aggressively and quickly treat her extreme pain. The doctor agreed after I promised to monitor Kim closely so that her breathing would not be compromised.

By the next morning, Kim’s pain was finally under control and shortly afterward, she was able to be discharged home on her usual medication regimen.

Governor Brown, using pain as a reason to enlist doctors and nurses to help patients kill themselves is perverse not only because pain can be controlled, especially with the medical advances we have today but also because Oregon’s own report shows that physician-assisted suicide victims in Oregon cited “Losing autonomy”, “Less able to engage in activities making life enjoyable”, “Loss of dignity”,“ Losing control of bodily functions” and “Burden on family, friends/caregivers” before “Inadequate pain control or concern about it” as the top end of life concerns.

Personally, I will continue to fight for good pain and symptom control for all patients as passionately as I oppose physician-assisted suicide.