“When Dying (by Physician-assisted Suicide) Becomes Unaffordable”

Although physician-assisted suicide is consistently portrayed in major media as just a matter of taking some pills and peacefully going to sleep and die, a November 9, 2017 article titled “When Dying Becomes Unaffordable” in Medscape (a free subscription resource for medical professionals) describes a very different and alarming scenario.

This article by Roxanne Nelson, RN BSN is primarily about outrage over pharmaceutical companies drastically raising the price for secobarbital, the most commonly used sedative drug dosage prescribed for physician-assisted suicide, from less than $200 to $3000 or higher. However, the article also reveals little-known problems with the oral overdoses themselves, the ironic connection with capital punishment, the rise of lethal injections in other countries and the expected increase in the assisted suicide business.

PROBLEMS WITH ORAL OVERDOSES

Physician-assisted suicide laws are silent on the actual drugs and dosages prescribed but taking the lethal overdose is not an easy matter, according to this article.

For the most commonly used drug secobarbital, a person has “to dismantle 100 capsules to obtain powder to mix into a lethal brew, a process that takes about 1 person-hour of effort“,  “generally mixed with juice of a sweet substance to mask the bitter taste” and “consumed at one time”. (Emphasis added) And, although unmentioned in the article, Oregon’s 2016 data summary on their physician-assisted suicide law reported that the minutes between ingesting the drugs prescribed and death ranged from 7 minutes to 9 hours. But even this related to documentation received on only 25 patients out of the 133 patients taking the overdose last year. The other 108 patients are listed as “information unknown” about the time between overdose and death.

According to the article, the second most commonly used sedative drug oral pentobarbital became unavailable in 2015, in part due to “the uncanny and uncomfortable parallel between executions and PAD (‘physician-assisted dying’, more accurately known as physician-assisted suicide)”. The intravenous form of this drug is used in lethal injection executions and the growing opposition to capital punishment along with limited therapeutic uses may have resulted in oral pentobarbital products “voluntarily withdrawn or discontinued by the manufacturers” and no longer available in the US.

According to the article, physicians in Washington have tried two cheaper and available assisted suicide “cocktails” (the article’s term) containing overdoses of two cardiac drugs, morphine and a sedative after finding that just an alcohol and sleeping pills combination made patients complain of a “burning sensation”.

The first lethal “cocktail” trial called DDMP resulted in 20% of patients taking longer than 4 hours to die but a stronger “cocktail” called DDMP2  is now said to kill the majority of patients within 2 hours.

So far the new lethal “cocktail has been given to about 60 patients and, with 10 more cases, the doctors intend to submit an article on their findings.

LETHAL INJECTION ASSISTED SUICIDE

Ms. Nelson also writes positively about other countries like Canada, Belgium, Luxembourg, and the Netherlands that use lethal injections to allow “more leeway and options as to the selection of drugs, cost, and mode of delivery.”

And, at least in Ontario, patients prefer the injection:

“For example, in Ontario, Canada ― a country where patients have a choice ― there have been very few cases of self-administration, less than 1%, according to James Downar, MD, CM, MHSc, a critical care and palliative care physician at the University Health Network in Toronto.”

And

“There is a strong desire to avoid the oral route here, given the failure rate,” (All emphasis added)

“NUMBERS ARE SMALL BUT SLATED TO GROW”

In this chilling final section of the article, Ms. Nelson predicts that with the recent passage of California’s physician-assisted suicide law in 2015 and more states considering such laws, “the number of individuals choosing this option will be significantly higher.”

And she concludes with this ominous prediction:

“As more laws are passed across the United States, the need for an effective and affordable medication or drug combination becomes increasingly imperative. Even if covered by insurance, artificially inflated drug costs place a burden on the healthcare system and on society in general, so a safe and inexpensive option would benefit everyone.

Currently, unless the generic and widely available drugs used in DDMP2 fall victim to price gouging or some other unforeseen issue, it appears that a viable option has become available.” (Emphasis added)

CONCLUSION

People, sick or healthy, have been dying by self-inflicted suicide since time began but we never encouraged or approved it until the last 25 years. Having medical professionals involved does not make suicide better.

We don’t solve problems by helping people kill themselves and if we don’t reject physician-assisted suicide, we will inevitably find ourselves-like Canada and other countries-expanding to lethal injections and other groups of people who are judged “better off dead”.

This is truly what we cannot afford.

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.

 

The Changing Rules for Organ Donation

BACKGROUND

Whether we are renewing our driver’s licenses, reading the news or watching TV, it’s almost impossible to miss the campaign to persuade us to sign an organ donation card.

But do we really know what we are signing?

While internet organ donor registration sites like Donate Life America and organdonor.gov still maintain that vital organs can only be harvested (the technical term for removal) after brain death (a controversial issue itself ), a whole new category of organ donors initially called NHBD (non-heart beating organ donors) and later changed to DCD (donation after cardiac death) was added in the 1990s.  This new pool of organ donors are patients who are severely brain-injured but not brain dead, on ventilators (breathing machines) and considered hopeless in terms of survival or predicted “quality of life”.

Organs from these patients are taken when families agree to stop the ventilator and allow doctors to take the person to an operating room where the patient’s organs are removed when (or if) the patient’s heartbeat and breathing stops for 2-5 minutes within a 1-2 hour time frame. If the patient does not die within the time frame, the transplant is cancelled because the organs are potentially damaged and the patient is then returned to a room to die without further treatment.

At first, there was some criticism of DCD on legal, medical and ethical grounds, especially after a 1997 segment of the TV show “60 Minutes” exposed the case of a young gunshot victim whose organs were taken by DCD but the medical examiner who conducted the autopsy said he believed the injury was survivable.

Nevertheless, this new kind of organ donation was deemed ethically acceptable in 2000 by the US Institutes of Medicine while unfortunately also finding “opinion is divided on the option of non-heart-beating donation for the patient who is ventilator dependent but conscious and who wants to stop life-sustaining treatment.

As of 2015, DCD comprised 8.9 percent of all transplants in the US but the procedure is still little-known to the public.

THE DEAD DONOR RULE AND IMMINENT DEATH DONATION

In 2016, UNOS (United Network for Organ Sharing), the organization that manages the nation’s organ transplant system under contract with the federal government, issued its decision on Imminent Death Donation, a policy that would take DCD a step farther to become virtual organ donor euthanasia.

Because “a substantial minority” of DCD donors fail to die fast enough in the 1-2 hour time frame for organ donation, UNOS was considering re-framing the issue as “the recovery of a living donor organ immediately prior to an impending and planned withdrawal of ventilator support expected to result in the patient’s death” to ensure better quality organs and avoid an unsuccessful procedure. (Emphasis added)

Not only would this language change DCD donors from dead donors to living donors, but this also effectively destroys the definition of Dead Donor Rule that states:

“The dead donor rule is an ethical norm that has been formulated in at least two ways: (1) organ donors must be dead before procurement of organs begins; (2) organ procurement itself must not cause the death of the donor. (Emphasis in original)

Although living organ donation can be ethical when a healthy person freely decides to donate an organ like one kidney to someone who has lost kidney function, this imminent death donation is entirely different because the donor’s organ is taken before a planned and expected death.

Writing in a 2013 New England Journal of Medicine article “The Dead-Donor Rule and the Future of Organ Donation”, a group of prominent doctors gave this rationale for abandoning the dead donor rule:

“Respect for autonomy requires that people be given choices in the circumstances of their dying, including donating organs. Nonmaleficence requires protecting patients from harm. Accordingly, patients should be permitted to donate vital organs except in circumstances in which doing so would harm them; and they would not be harmed when their death was imminent owing to a decision to stop life support. That patients be dead before their organs are recovered is not a foundational ethical requirement.” (Emphasis added)

The following year, a polling study in the Journal of Medical Ethics concluded that  the American public is “largely in support of organ removal even though it causes death in this scenario.” (Emphasis added)

CONSEQUENCES

Although UNOS ultimately decided to shelve last year’s proposal to approve Imminent Death Donation “because of its potential risks at this time, due to a lack of community support and substantial challenges to implementation”, that decision may only be temporary:

“In the future, it may be possible to adequately address those challenges through additional research or careful policy development or revision.”

However, apparently no bad ethical idea ever really dies when it comes to increasing the number of organs to transplant and now UNOS is currently considering “Living Organ Donation by Persons with Certain Fatal Diseases who Meet the Criteria to be Living Organ Donors”.

Thanks to the disability advocacy group Not Dead Yet (NDY), I was recently alerted to this new  proposed organ donation policy change and read UNOS’ public comment proposal that describes such patients as having “a progressive, incurable, chronic disease that is fatal and will ultimately be terminal” and gives examples like Alzheimer’s and Multiple Sclerosis.

In its statement opposing the policy change, NDY points out:

“Yet the Committee seems to want to create a special subgroup of living donors to whom the normal rules governing living donations do not apply and whose deaths are of less concern than the deaths of other donors because these living donors are presumably anticipated to die soon anyway. The recommendations would promote overt and lethal discrimination between donors based on disability and perceived health status…

One example of the Committee’s biased double standard is while OPTN policy is not to accept persons as living donors if they show evidence of suicidality, it urges an exception for people with certain fatal diseases so as not to preclude people with plans for assisted suicide (where legal) from first undergoing a living organ donation. (pg. 10) Surely, public confidence in the organ procurement system will not be enhanced by any policy proposal that hints toward a future in which organ euthanasia is accepted and promoted.” (Emphasis added)

CONCLUSION

Unfortunately, the short time frame for public comments on this new policy is now closed and UNOS apparently does not send out alerts to the general public. Also, to the detriment of the public, the media tends to publicize feel-good stories about donation rather than explore controversial policies.

Personally, I am for ethical donation of organs and tissues. Years ago, I volunteered to donate a kidney to a friend and our youngest grandson was saved in 2013 by an adult stem cell transplant.

But I do not have an organ donor card nor encourage others to sign one because I believe that standard organ donor cards give too little information for truly informed consent. Instead, my family knows that I am willing to donate tissues like corneas that can be ethically donated after natural death and will only agree to that donation.

The bottom line is that what we don’t know-or allowed to know-can indeed hurt us, especially when it comes to organ donation. We need to demand transparency and information before such policies are quietly implemented.

 

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.

Response of the National Association of Pro-life Nurses to the recent policy Statement of the American Nurses Association on voluntary holding of Food and Hydration

I am a proud member of the National Association of Pro-Life Nurses (NAPN) myself. There is also a Facebook page for NAPN. Please share this, especially if you know a nurse or someone who is thinking about becoming one.

September 28, 2017

NAPN Response

The National Association of Pro-life Nurses (NAPN) is deeply saddened to learn of the recent position statement of the American Nurses Association (ANA) regarding the withholding of food and hydration as a means of hastening death.

Our organization had hoped that the announcement of the study of the issue would result in a better decision, but based on the ANA revised code of ethics of 2015, it does not come as a surprise. The ANA continues to show its complicity in promoting the culture of death.

The new position claims that “people with decision making capacity have the right to stop eating and drinking as a means of hastening death.” (Termed VSED for “Voluntary Stopping of Eating and Drinking.)

Unfortunately, for us as pro-life nurses, that means that the ANA will expect that nurses will comply with this decision and “honor” this decision, making us complicit with this form of suicide. As with other positions, the ANA will not come to the defense of any nurse holding a conscience objection to this policy. The ANA has effectively given up its previous position, weak as it was, of opposing assisted suicide.

The entire list of recommendations regarding food and water reads:

 “ANA Recommends that:

  • Nurses recognize those situations when nutrition and hydration can no longer benefit a patient, and adhere to clinical standards that include providing nutrition and hydration only to patients for whom it is indicated.
  • Patients with decision-making capacity—or their surrogates, who are relying on the patients’ preference or have knowledge of the person’s values and beliefs—will be supported in decision-making about accepting or refusing clinically appropriate nutrition and hydration at the end of life.
  • Nurses will have adequate and accurate information to understand patients’ cultural, ethnic, and religious beliefs and values regarding nutrition and hydration at the end of life. Patients’ views and beliefs should be respected.
  • Nurses will support patients and surrogates in the decision-making process by providing accurate, precise and understandable information about risks, benefits and alternatives.
  • Decisions about accepting or forgoing nutrition and hydration will be honored, including those decisions about artificially delivered nutrition as well as VSED.
  • People with decision-making capacity have the right to stop eating and drinking as a means of hastening death.” (All emphasis added)

The ANA statement goes on to admit that “There is some consensus (though not universal agreement) that VSED can be an ethical and legal decision”, but in regard to conscience rights, the document only states that “Nurses who have an informed moral objection to either the initiation or withdrawal of nutrition or hydration should communicate their objections whenever possible, to provide safe alternative nursing care for patients and avoid concerns of patient abandonment.” (Emphasis added)

Communication of the nurse’s objection to compliance “whenever possible” leaves the pro-life nurse adherent to the patient’s wishes if there is no other nurse to assume the task of the Grim Reaper. In cases where this is impossible, charges of “abandonment” can be filed resulting in loss of employment and or license and even to lawsuits.

The statement that “providing nutrition and hydration only to patients for whom it is indicated” is problematic in view of the removal of feeding tubes from the severely brain-injured like those said to be in the so-called “persistent vegetative state” and not dying could be starved to death with impunity. (Emphasis added)

The ANA claims to be the “voice of nursing” and “the nation’s only full-serviced professional organization that represents the interests of the nation’s 3.6 million registered nurses.” Yet, in reality, when the ANA last released its membership numbers in 2011, actual membership was less than 7% of registered nurses in this country.

The 2015 Annual Report does cite a 9% increase in membership, but no figures are available.  They certainly do not speak for the numbers of us who do not share their disregard for the lives of the vulnerable.

At the very least, we health care professionals need our conscience rights honored and protected so that we can truly and ethically care for our patients. With positions like that of the ANA, nurses with a true respect for the sanctity of human life and the protection of it in all its forms are placed in a distinct disadvantage and are pressured to abandon our profession of caring.

For further information, please contact the Executive Director, Marianne Linane, at director@nursesforlife.org.

 

 

Another Threat to Conscience Rights for Medical Professionals

2012 New York Times:  “Instead of attempting to legalize physician-assisted suicide, we should focus our energies on what really matters: improving care for the dying — ensuring that all patients can openly talk with their physicians and families about their wishes and have access to high-quality palliative or hospice care before they suffer needless medical procedures. The appeal of physician-assisted suicide is based on a fantasy. The real goal should be a good death for all dying patients.” (Emphasis added)

2016, Journal of the American Medical Association: “CONCLUSIONS AND RELEVANCE Euthanasia and physician-assisted suicide are increasingly being legalized, remain relatively rare, and primarily involve patients with cancer. Existing data do not indicate widespread abuse of these practices. (Emphasis added)

The writer of these conflicting views on assisted suicide is Ezekiel J. Emanuel, M.D., PhD., a very influential doctor who is Chair of the Department of Medical Ethics and Health Policy at the University of Pennsylvania and one of the architects of Obamacare. He is considered an expert on medical ethics who speaks and writes prolifically for both medical journals and general media outlets.

NO CONSCIENCE RIGHTS?

Unfortunately, Dr. Emmanuel is now opposing conscience rights for those of us who object to participating in deliberate death decisions like abortion and assisted suicide.

In his April, 2017 New England Journal of Medicine article “Physicians, Not Conscripts — Conscientious Objection in Health Care” , Dr. Emanuel writes:

“Health care professionals who conscientiously object to professionally  contested  interventions  may  avoid  participating  in them directly, but, as with military conscientious objectors, who are required to perform alternative service, they cannot completely absent themselves from providing  these  servicesConscientious  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 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. “

……

Although the political process may continue unabated, and courts may deem conscience clauses to be legal, it is incumbent on professional societies to affirm professional role morality and authoritatively articulate the professional ethical standards to which all licensed health care professionals must adhere. 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

Please reread that last sentence “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.

Some may think this cannot happen in the U.S. or that actions like assisted suicide only occur privately in a patient’s home but, as I wrote in my last blog “Outrage: The American Nurses Association Approves Physician Assisted Starvation Suicide”, the American Nurses Association recently published a position statement “Nutrition and Hydration at the End of Life” that states:

” Decisions about accepting or forgoing nutrition and hydration will be honored, including those decisions about artificially delivered nutrition as well as VSED.”

and

“People with decision-making capacity have the right to stop eating and drinking as a means of hastening death.”

(All emphasis added)

In reality, nurses face an even greater risk than doctors who refuse to participate or refer patients making death decisions.

After assisted suicide was legalized in Oregon, the Oregon Nurses Association quickly issued guidelines for nurses that included these two points for “Nurses Who Choose Not to Be Involved”: “You may not:”

  • Subject your patients or their families to unwarranted, judgmental comments or actions because of their decision to continue to provide care to a patient who has chosen assisted suicide.

  • Abandon or refuse to provide comfort and safety measures to the patient.”  (All emphasis added)

Abandonment is a very big deal in nursing. To be accused of abandoning a patient can result in termination, loss of license or even a lawsuit.

But even if you are not a health care professional, you should be concerned about ethical health care professionals being forced out of health care by taking Dr. Emmanuel’s advice that there are only “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. ”

Can any of us really trust a health care system that only accepts medical professionals who are just as willing to help end our lives as they are to  care for us?

Physician-assisted Suicide and the Palliative Care Physician

 

“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.

 

 

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.

Why is Baby Charlie Gard’s Government-appointed Guardian a Euthanasia Activist? Does It Matter?

So now we learn that Baby Charlie Gard’s guardian is a euthanasia activist who is Chairman of Compassion in Dying, an “end-of-life” advocacy group with a sister organization that supports assisted suicide.

This should not be a surprise.

In a July 19, 2017 New York Times op-ed “Charlie Gard and Our Moral Confusion”, Kenan Malik, who wrote a book on morality and ethics on moral issues, argues:

“In Charlie’s case, the judges decided that it is in his interest to die even with a possibility of treatment. Mr. Conway, in contrast, wants to be allowed to die in dignity, but the law will not permit it. His motor neuron disease is incurable, and he is not expected to live beyond 12 months. His condition is painful, and will become more so. He wants doctors to be able to give him a lethal injection when he decides that it is time to end his life. Under British law, it would be a criminal offense for a doctor to do so.”

“Death with dignity” is the catchphrase and death is considered the ideal end in both of these cases when viewed through the prism of so-called “dignity”.

Unfortunately, this “death with dignity” must be enforced through laws and courts and even down to the medical personnel involved.

“DEATH WITH DIGNITY” AND ITS’ OTHER VICTIMS

In June, a Canadian home health nurse was faced with the option of participating in assisted suicide with her patients or resigning. She resigned and yet another dedicated nurse was lost to the principle of a right to “death with dignity”.

However, Mary Jean Martin was afforded no dignity or rights herself. She was at the mercy of a new health care law that now mandates participation in medical lethal overdoses, an act considered medical murder before.

Ms. Martin called being forced to choose between her conscience and her job a “violation of my human rights.” She wrote:

“Why has my right to peacefully follow my own beliefs within a free and inclusive society been suddenly taken away from me?” she said.

“After 30 years as a nurse these laws make me feel no longer proud of being either a health care professional in this country or Canadian citizen,” she added.

The forced normalization of assisted suicide/euthanasia radically changes medicine for the healthy as well as the ill when only medical professionals willing to participate in assisted suicide/euthanasia are allowed to practice their professions.

CONCLUSION

Whether the issue is denial of food and water to brain-injured people, futility determinations overriding patients’ and families’ decisions, denying potentially beneficial experimental treatment or forcing medical personnel to participate in lethal overdoses, etc., the word “choice” in these cases is a misnomer when only the choice for death is considered “dignified”.

 

Baby Doe and Karen-35 Years Later

When I started nursing school 50 years ago, medical ethics was not a course but rather common sense principles incorporated into our education. There was no controversy about not harming patients, integrity, equality of treatment regardless of status, etc.

So, of course, abortion and euthanasia were unacceptable and even thinkable in those days.

I particularly remember one teacher who told us about the hypothetical situation of a child with Down Syndrome whose parents wanted to let their baby die and how we naturally had to put the interests of the child first. This kind of protection for patients was routine both ethically and legally in those days.

In 1982, I remembered that situation when Baby Doe,  a newborn baby boy with an easily correctable hole between his esophagus (food pipe) and trachea (windpipe), was denied this lifesaving surgery by his parents and a judge because he also had Down Syndrome. Six days later, Baby Doe starved and dehydrated to death while his case was being appealed to the Supreme Court after the Indiana Supreme Court ruled 3-1 against saving him.

My husband, a doctor, and I were appalled when we first read about Baby Doe in the newspaper and my husband suggested that we adopt the baby ourselves and pay for the surgery.

I said yes but with some reluctance since I was already pregnant with our third child and our other children were just 5 and 3. But who else was better situated than us to care for a child with a disability who needed surgery?

In the end, we were too late to save Baby Doe. We found out that Baby Doe’s parents had already rejected the many other families who tried to adopt him.

Five months later, I gave birth to my daughter Karen who also happened to have Down Syndrome and a life-threatening condition that needed surgery.  Karen was born with a complete endocardial cushion defect of the heart  that the cardiologist told us was inoperable. We were told to just take her home and our baby would die within 2 weeks to 2 months.

I was heartbroken and cried for 3 days in the hospital before I finally got mad. My obstetrician never came back to check on me in the hospital even though I had a C-section and I demanded a second opinion on her heart condition in case the cardiologist was biased against children with Down Syndrome.

I insisted on leaving the hospital early with my daughter because I wanted as much time as possible with her and especially because I realized that I needed to research Karen’s heart condition to effectively advocate for her.

I joined the St. Louis Down Syndrome Association which helped me enormously, especially with my research and emotional support. Fortunately, it turned out that the initial prognosis was wrong and the cardiologist told us that Karen’s heart could be fixed with just one open-heart operation at age 6 months.

I was elated until the cardiologist told me that he would support my decision to operate “either way”, meaning I could refuse surgery just like Baby Doe’s parents.

I was furious and told him that the issue of Down Syndrome was irrelevant to Karen’s heart condition and that my daughter must be treated the same as any other child with this condition. I also added that if he were biased against people with Down Syndrome, he could not touch my daughter.

To his credit, this doctor recognized the injustice and because of Karen, he eventually became one of the strongest advocates for babies with Down Syndrome.

Unfortunately, I ran into other medical professionals caring for Karen who were not so accepting. One doctor actually told us that “people like you shouldn’t be saddled with a child like this” and another doctor secretly wrote a DNR (do not resuscitate) order against my instructions at the time. It was then that I realized that my so-called “choice” to save my daughter was really a fight.

Tragically, Karen died of complications of pneumonia when she was just 5 ½ months old and just before her scheduled open-heart surgery. I will always miss her but I am so grateful that I was her mother. Karen changed many lives for the better, especially mine.

I became active in the Down Syndrome Association, promoted President Reagan’s “Baby Doe” rules ,  provided babysitting/respite for many children with various disabilities, and even got a chance to talk to then Surgeon General C. Everett Koop about setting up a national hotline for new parents of children with disabilities to find resources.

But most importantly, I was determined to find out what had happened to medical ethics  over the years since nursing school that resulted in the Baby Doe tragedy and hopefully help reverse the mindset that people with disabilities were “better off dead”.

What I discovered was a landmark 1979 book titled “Principles of Biomedical Ethics” written by Tom Beauchamp PhD, a professor of philosophy, and James Childress PhD, a theologian and also a professor of philosophy. Neither one had a medical degree.

They devised these four principles for medical ethics:

  • Autonomy – The right for an individual to make his or her own choice.
  • Beneficence – The principle of acting with the best interest of the other in mind.
  • Non-maleficence – The principle that “above all, do no harm,” as stated in the Hippocratic Oath.
  • Justice – A concept that emphasizes fairness and equality among individuals.

Although all these principles were considered equal, it wasn’t long before autonomy became the cornerstone principle in ethics and law, ultimately leading not only to Baby Doe but also to the legalization of assisted suicide/euthanasia.

Ironically, all these principles have been used to justify cases like Baby Doe’s as well as assisted suicide/euthanasia.

Beneficence and non-maleficence have become a ways to see death as an actual blessing to real, perceived or potential suffering. Ominously, the justice principle has become the rationale for rationing under the guise of supposedly not wasting scarce healthcare resources .

CONCLUSION

35 years after Baby Doe, some things like medical technologies and education for people with disabilities are better but many things like assisted suicide/euthanasia have pushed the ethics of death even farther and are a threat to all of us and our loved ones.

The Baby Doe tragedy should have been a fire alarm for the evils we see today but it is never too late or impossible to try to promote a culture of respect for all lives.