Futility Policies and the Duty to Die (updated 2005)

I am on the road this week speaking to groups and doing radio interviews. So here is an article published in Voices magazine (a Catholic women’s’ magazine) in 2003 with an update in 2005.  In the intervening years, the problems have grown worse but I originally wrote this article when almost no one had heard of futility policies. Here is the article.

When I first saw “Jack” last September (2002), he was lying unconscious in an ICU with a ventilator to help him breathe. It had been two weeks since a truck struck the 60 year-old and his injuries were devastating — including broken bones, blunt-force trauma and a severe head injury.

When Jack’s family contacted me about seeing him, they were desperate. The doctors told them that he would never come out of the coma and the issue of withdrawal of treatment was raised. The wife refused.

I could make no guarantees but I gave Jack’s wife a pamphlet on coma stimulation and began visiting Jack weekly.

As an ICU nurse myself, I could see that some of the staff felt that taking care of Jack was a waste of time. So I was not surprised when the family was soon told that nothing more could be done. But it was shocking when the hospital told the family that Jack’s ventilator was going to be removed regardless of their wishes. The family was given a deadline to find another health facility to take him.

By that time, Jack was opening his eyes and his family thought he could squeeze their hands at times. The medical and nursing staff assured them that this was just a “reflex”.

After some frantic phone calls, Jack was transferred to a long care facility that took patients on ventilators. Soon after the transfer, his condition became critical again and the family insisted he be treated. Jack was transferred to a hospital ICU. When the staff found out I was a nurse, some of them asked me what the family’s rationale was for continuing treatment. It was obvious that they too felt Jack was a hopeless case.

But over time, Jack improved and was finally able to breathe on his own without a ventilator so he was transferred to a regular hospital bed. Eventually it became evident to all that Jack was starting to respond to commands but it took pressure to get rehab services for him.

Just before Thanksgiving — a little more than two months after his accident — Jack became fully awake. He is now in a rehabilitation facility near his home in Illinois where the staff is working to strengthen his arms and legs, which were broken in the accident. Now, no one meeting him would ever guess that he had had a brain injury.

Even doctors and nurses who ordinarily disdain religion often call cases like Jack’s “miracles”. Of course, for many in healthcare, it’s easier to believe in miracles than to accept that they were wrong and a life could have been unnecessarily or prematurely lost.

But while Jack’s story has a happy ending, many similar cases do not. Families often automatically accept or are even pressured into accepting a doctor’s grim prognosis for their loved one and withdraw treatment after a patient’s brain is injured by trauma or other conditions like a stroke. Usually, the patient then dies.

Unfortunately, families like Jack’s who choose to continue treatment despite a “hopeless” prognosis are increasingly being denied that choice because of “futile care” policies being adopted in many hospitals throughout the country.

And such “futile care” principles have so permeated much of medicine today that there are even cases of elderly or terminally ill patients expected to have months of life remaining whose doctors didn’t want to prescribe medications such as antibiotics because the person was going to die sooner or later anyway.

Futile Care Policies and “Choice”
Most people assume that either they or their families will have the right to decide about medical treatment when they become seriously or critically ill. The biggest problem, people are told, is that they or their loved one will be tethered to a machine forever if they do not sign a “living will” or other health care directive. The “right to die” movement has convinced most people and medical personnel that the ability to refuse treatment is one of the most important aspects of medical care to prevent patients and families from needless suffering. Indeed, poll after poll shows that most people say they would rather die than be a “vegetable”. And many people automatically assume that they would never want their lives prolonged if they had a terminal illness, were paralyzed or senile, etc. Most people assume that refusing treatment, like assisted suicide (the other goal of the “right to die” movement), means choice and control.

But a funny thing happened on the way to this supposed “right to die” nirvana.

Some families and patients did not “get with the program” and insisted that medical treatment be continued for themselves or their loved ones despite a “hopeless” prognosis and the recommendations of doctors and/or ethicists to stop treatment. Many doctors and ethicists were appalled that their expertise would be challenged and they theorized that such families or patients were unrealistic, “in denial” about the prognosis or were mired in dysfunctional family relationships. (In contrast, families who agree to withdraw treatment are almost always referred to as “loving” and their motives are spared such scrutiny.)

At a 1994 pediatric ethics conference I attended, one participant was even applauded when he suggested that parents who refused to withdraw treatment from their “vegetative” children were being “cruel” and even “abusive” by not “allowing” their children to die. In some cases, doctors and ethicists have even gone to court to force withdrawal of treatment over a family’s objections. These ethicists and doctors were stunned when judges were often reluctant to overrule the families.

Yet over the years and unknown to most of the public, many ethicists have still refused to concede the choice of a right to live and instead have developed a new theory that doctors cannot be forced to provide “inappropriate” or “futile” care and treatment to patients deemed “hopeless”. This theory has now evolved into “futile care” policies at hospitals in Houston, Des Moines, California and many other areas. Even Catholic hospitals are now becoming involved.

In the July-August 2000 issue of the Catholic Health Association’s magazine Health Progress, Catherine M. Mikus and Reverend Peter Clark — a lawyer and an ethicist — argue that it is “time for a formalized medical futility policy” in Catholic hospitals. Like many such articles in secular ethics journals, the authors refrain from being too specific about what conditions and which patients would be subject to such a policy. The authors concede that even the American Medical Association says that medical futility is a concept that “cannot be meaningfully defined” and is a “subjective judgment” on which there is no widespread agreement.

Mikus and Clark make it clear that they are not talking about treatments that are “harmful, ineffective, or impossible”, the traditional concept of medical futility that, of course, is not ethically obligatory. For example, no doctor would honor a family’s request for a kidney transplant for a person who is imminently dying. Instead, the authors argue for a new definition of futility to overrule patients and/or families on a case-by-case basis based on the doctor’s and/or ethicist’s determination of the “patient’s best interest”. Ironically, the “right to die” movement was founded on the premise that patients and/or families are the best judges of when it is time to die. Now, however, we are being told that doctors and/or ethicists are really the best judges of when we should die. This is reminiscent of the imperious statement attributed to Henry Ford that his Model T customers could “paint it any color, so long as it’s black”. Thus the “right to die” becomes the “duty to die”, with futile care policies offering death as the only “choice”.

But despite the lack of consensus on what constitutes futile care, these Catholic authors are passionate about why such policies should be adopted and insist that their policies are “firmly rooted in the Catholic tradition”:

“Proper stewardship of these resources entails not wasting them on treatments that are futile and inappropriate. They must be rationally allocated; to waste them is ethically irresponsible and morally objectionable”. (Emphasis added)

In other words, a social justice-style argument is being made to save money.

Unfortunately, when it comes to Mikus and Clark’s opinions, not only is a sense of humility lacking but also a sense of God’s jurisdiction:

“In assessing whether a treatment is medically futile, physicians must consider carefully not only the values and goals of the patient/surrogate, but also those of the community, the institution, and society as a whole”. (Emphasis added)

This not only ignores God’s ultimate role in life and death but also turns the Hippocratic oath on its head. While the Hippocratic oath is no longer routinely used with medical students, its enduring legacy has always been the sacredness of the commitment of the doctor to his individual patient. Now, new doctors are often told that their ultimate commitment instead resides with the health and welfare of society.

It is appalling that Catholic doctors are now also being encouraged to adopt the secular and utilitarian concept of the greatest good for the greatest number rather than a spiritual commitment to each individual for whom they care. Under this new standard, Jesus the great Healer must be considered a failure for tenderly concerning Himself with healing such “little” lives during His ministry rather than constructing a more “politically correct” health system.

Where Do We Go from Here?
Just a generation ago, doctors and nurses were ethically prohibited from hastening or causing death. Family disputes and ethically gray situations occurred, but certain actions (such as withdrawing medically assisted food and water from a severely brain-injured but non-dying person) were considered illegitimate no matter who was making the decision.

But with the rise of the modern bioethics movement, life is no longer assumed to have the intrinsic value it once did, and “quality of life” has become the overriding consideration. Over time, the ethical question “what is right?” became “who decides?” — which now has devolved into “what is legally allowed?”

Thus, it is not surprising that the Health Progress article on futility policies is subtitled “Mercy Health System’s Procedures Will Help Free Its Physicians from Legal Concerns”. This is no afterthought, but rather the greatest fear of the authors that families may sue.

Doctors are understandably afraid of civil or malpractice lawsuits. In this article, Mikus and Clark attempt to convince doctors that a written futility policy — no matter how vague — is necessary. Then doctors would use the power of an ethics committee to back up their decisions in any legal proceeding in order to prove that the determination of futility meets the hospital’s standard of care.

Even more ominously, there have been efforts to incorporate futile care policy into state and federal law. For example, Senator Arlen Specter introduced the Health Care Assurance Act of 2001 that, while aimed at improving health care for children and the disabled, nevertheless contains a provision that there is no obligation:

“to require that any individual be offered, or to state that any individual may demand, medical treatment which the health care provider does not have available, or which is, under prevailing medical standards, either futile or otherwise not medically indicated”. [Emphasis added.]

The first step in solving a problem is to recognize it. We cannot always rely on a mainstream media that would rather exhaustively cover a star’s shoplifting charge than alert us to thorny ethical problems. Legislation and policies are often developed without public knowledge or comment. Health insurance can no longer be counted on to pay for all needed treatment in many situations.

This is why publications such as Voices and many other Catholic periodicals, pro-life news services and the Internet are so important, especially in the area of ethics. We in the Church are also blessed with encyclicals, Vatican documents and the writings of the doctors of the Church, which give clear principles that are still just as valid and useful as ever in a world of increasing technology and seductive decadence.

If we truly want to protect lives, save souls and fight injustice, we cannot remain silent in the face of an ever-expanding “culture of death”.

Postscript: A couple of years after this was published, Jack was home and doing well when I was contacted by a documentary team from the UK who were making a film about Jack’s experience. I was asked to be a part of this.

I spent a lot of time with the British team and they told me how giving up on someone like Jack would not happen in the UK, despite their government-run National Health Service.

I knew this because in 2000, Dr. Keith Andrews of the Royal Hospital for Neuro-disability and his team in the UK had determined that “The slow-to-recover patient is often incorrectly labelled as being in VS (vegetative state)” at a rate of four out of 10. Dr. Andrews and his team developed the SMART (Sensory Modality Assessment and Rehabilitation Technique) to be used in hospitals to reduce the danger of misdiagnosis.

 

 

 

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?

Outrage: The American Nurses Association Approves Physician Assisted Starvation Suicide

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

and

“There is an extensive knowledge base to help manage the burden of most physical symptoms (of voluntary stopping of eating and drinking). Symptom control is imperative.”

With these quotes from its’ recent position statement “Nutrition and Hydration at the End of Life”, the American Nurses Association (ANA) effectively gives up the principle of opposing physician assisted suicide.

Last November, I wrote a blog when I was alerted off that the ANA  was drafting a new position statement on food and water. The nurse who alerted me included a site for public comment and I urged others to participate as I did.

Now I am saddened but not really surprised to find that final result was the endorsement of decisions withdrawing food and water, even by mouth, and even if the patient is not imminently dying. The statement also explicitly included people with “severe neurological conditions” and dementia.

As the ANA statement makes clear “Decisions about accepting or forgoing nutrition and hydration will be honored, including those decisions about artificially delivered nutrition as well as VSED.” (Emphasis added) VSED stands for voluntary stopping of eating and drinking and is promoted by Compassion and Choices, the former Hemlock Society, as a legal alternative in states without assisted suicide laws.

Here are the ANA’s recommendations on food and water in its’ entirety from the document:

“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 position statement admits “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)

DOES THE ANA SPEAK FOR ALL NURSES?

The American Nurses Association claims it is the “voice of nursing” and “the nation’s only full-service professional organization that represents the interests of the nation’s 3.6 million registered nurses.”

However, the ANA does not give out its actual membership numbers and the vast majority of the nurses I have encountered over many decades do not belong to the ANA.

I used to belong to the ANA many years ago and was even active in my state’s chapter, hoping to get support for conscience rights after the Nancy Cruzan feeding tube case. But I  became disillusioned when the organization became more politically active and took controversial positions without notifying members. I eventually joined and became active in the National Association of Pro-Life Nurses.

Medical ethics and law has radically changed in just a few decades and now we are confronting physician assisted suicide and other deliberate death decisions.

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. Unfortunately, the ANA is hurting rather than helping that objective when it comes to nurses refusing to participate in deliberate death decisions.

 

 

 

Planned Parenthood Branches Out

When I first read the article “Planned Parenthood’s New Low: Teaching Transgender Ideology to 4-Year-Olds”, I was skeptical.

Although I have long had no illusions about Planned Parenthood since the 1973 Roe v. Wade US Supreme Court decision legalizing abortion, its’ promotion  of “comprehensive sex education” in schools, its’ fight against the partial birth abortion ban and the most recent scandal of selling body parts of aborted babies for “research, I was surprised by this new development.

I went to the Planned Parenthood website to see for myself.

There I found not only the online advice for teaching children as young as preschoolers about transgender issues but also a list of Planned Parenthood facilities across the nation that offer medical services including hormone treatment to people with transgender issues.

But why would Planned Parenthood take on this controversial issue now?

Could money be at least part of the reason?

Not only are some states moving to defund Planned Parenthood of taxpayer money  states along with efforts to defund it federally of the now over half a billion taxpayer dollars annually, but also abortion clinics are shutting down in many states. For example, just in California, three Planned Parenthood abortion facilities closed in June.

And not surprisingly, the most recent scandal about selling body parts of aborted babies has been devastating to Planned Parenthood’s self-proclaimed image as an altruistic dispenser of women’s health services and possibly its’ fundraising efforts.

Another reason for taking on this new issue of transgender identity, which is controversial even among medical experts,  could be that Planned Parenthood portrays itself as an expert on issues of sexuality. And if you regularly read the news, many activists and most mainstream media now seem almost obsessed with the politics surrounding transgender issues.

However, when I was a teenager in the 1960s,  I remember being told that Planned Parenthood was just about contraception and that it said abortion ended the life of a baby before it was born and could impair a woman’s future fertility.

I was an experienced RN by the time the US Supreme Court legalized abortion in the 1973 Roe v. Wade decision and I discovered about Planned Parenthood’s involvement in abortion years before that decision.

Later, I personally found out that the “comprehensive sex education” that Planned Parenthood promotes was in my children’s public schools and I wrote about this in a 2001 article titled “What About Sex Ed?”. I also joined other concerned parents in objecting to the often biased and inaccurate information our children were receiving. The schools tried to reassure us that our concerns would be addressed in the near future.

But it wasn’t long before we realized that this was a delaying tactic to last until our children graduated. In my case, it was over a decade before my youngest finally graduated but I made sure to teach them myself about the medical, moral and emotional issues surrounding sexuality and health.

Now, this very same school district my now adult children attended is proposing to change its’ curriculum to teach even the very young grade school students  “about topics like gender roles and gender re-assignment” despite many parents publicly and strongly objecting.

CONCLUSION

The Planned Parenthood Federation of America now takes in almost $1.3 billion in total revenue with $528 million in government taxpayer funding and is listed in the top 50 of the largest U.S. charities .

But is Planned Parenthood really a charity needing massive government taxpayer funding or rather more of an enormous business enterprise with strong political ties and an expansive, society-changing agenda that should stand on its own without government funding?

We need the answer to that question as soon as possible.

 

Follow Up to “My Amazing Operation”: New Study Shows That The Diagnosis of Primary Hyperparathyroidism is Often Missed

Last June, I wrote about my parathyroid surgery and how the crucial diagnosis of hyperparathyroidism can be missed.

The parathyroid glands are four small glands located behind the thyroid in the neck whose sole function is to control the amount of calcium in our bodies within a tight blood range of about 8.5-10.5 mg/dL, depending on a particular laboratory’s values.

If one or more of these small parathyroid glands starts growing (called an adenoma and rarely cancerous), this causes the parathyroid to release too much parathyroid hormone which causes abnormally high calcium in the bloodstream. This can cause serious health problems such as cardiovascular problems, osteoporosis (bone loss which can lead to fractures), depression and even premature death.

The surgery involved is now a minimally invasive procedure and, in my case, I was able to go home the same day after an early morning surgery.

Many symptoms of primary hyperparathyroidism can be unnoticed, mild or confused with other conditions like normal aging. The diagnosis is confirmed by a high amount of calcium in the blood (hypercalcemia) along with a high level of PTH (parathyroid hormone).

In my case, I asked for a PTH blood test when my calcium level rose and I researched all the causes of high blood calcium. I realized then that I had some mild symptoms of primary hyperparathyroidism that I attributed to other causes.  After my operation, my symptoms went away.

Now a study just came out July, 2017 in the medical journal Annals of Surgery titled Failure to Diagnose Hyperparathyroidism in 10,432 Patients with Hypercalcemia: Opportunities for System-level Intervention to Increase Surgical Referrals and Cure”

that concludes:

A significant proportion of patients with hyperparathyroidism do not undergo appropriate evaluation and surgical referral. System-level interventions which prompt further evaluation of hypercalcemia and raise physician awareness about hyperparathyroidism could improve outcomes and produce long-term cost savings.” (Emphasis added)

The study involved over 10,000 patients with blood calcium levels above the normal upper limit of 10.5 mg/dl and found that only 31% had a workup including a PTH level and of those patients with a high PTH level, only 22% were referred to a surgeon.

CONCLUSION

In my previous blog, I wrote that that the previous criteria for parathyroid surgery included a calcium level of  above 11.5 mg/dl but that my surgeon told me that the criteria may be changing to an even lower level. This new study may change that criteria.

Calcium levels are usually checked in annual exams including blood work. I would recommend that if your calcium level is above the normal high, you ask your doctor if further testing like a PTH blood test is warranted and especially if you notice any signs or symptoms of hyperparathyroidism.

Primary hyperparathyroidism has long been considered a relatively rare condition with 100,000 people diagnosed annually in the U.S.  but, according to this study, it might not actually be so rare.

The good news is that it can be treated.

“What Kind of Society Do You Want to Live In?”

This month, CBS News aired a TV show titled “Why Down Syndrome in Iceland Has Almost Disappeared. Iceland encourages all expectant mothers to test their unborn babies for birth defects and, when a probable (85% accuracy, according to the show) Down Syndrome  diagnosis is made, almost all mothers have an abortion. This is the highest percentage of all countries. But Down Syndrome is not being “eradicated”. The children are.

In the show, an Icelandic mother who has a 7 year old daughter with Down Syndrome was interviewed. She said about her daughter:

“I will hope that she will be fully integrated on her own terms in this society. That’s my dream, Isn’t that the basic needs of life? What kind of society do you want to live in?” (Emphasis added)

A counselor at an Icelandic hospital had another view and

“tells women who are wrestling with the decision or feelings of guilt: “This is your life — you have the right to choose how your life will look like.” (Emphasis added)

Horrifyingly, she also shows the reporter “a prayer card inscribed with the date and tiny footprints of a fetus that was terminated.” (Emphasis added)

The counselor ends by saying:

“We don’t look at abortion as a murder. We look at it as a thing that we ended. We ended a possible life that may have had a huge complication… preventing suffering for the child and for the family. And I think that is more right than seeing it as a murder — that’s so black and white. Life isn’t black and white. Life is grey.” (Emphasis added)

CONCLUSION

In June, I wrote a blog “Baby Doe and Karen-35 Years Later” about the medical discrimination that both of those gentle souls with Down Syndrome faced in their short lifetimes.

But as frightening as that discrimination was, the reaction from others-even family-when Karen was born was the most heartbreaking.

When Karen was born, there were no congratulations or smiles from the staff or relatives even though Karen was unarguably a beautiful and serene baby girl. But although shattered by the initial (and wrong) diagnosis of an inoperable heart defect, I was determined that Karen be welcomed at least by me. So on the night she was born, I sang “Happy Birthday” and told her how much I loved her through my tears.

After Karen tragically died almost 6 months later, even some family members told me that I should not have tried so hard to save “that baby”.

My point is that it is not enough to just be against aborting or withholding treatment from babies with disabilities. They and their parents must feel supported and encouraged instead of isolated or pitied.

Now that’s the kind of society I want to live in!

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.

Miracle Babies

Yesterday, we learned that Baby Charlie Gard is expected to die soon as his heartbroken parents have decided to remove his life support because a US doctor had told them it was now too late to give Charlie nucleoside therapy. According to a BBC article, “US neurologist Dr Michio Hirano had said he was no longer willing to offer the baby experimental therapy after he saw the results of a new MRI scan last week.” Baby Charlie’s parents are now asking the court to allow them to take Charlie home to die.

We have learned much from Baby Charlie’s tragedy, not only about the perils of government deciding who should live and who should die but also about the love and commitment of his dedicated parents and the importance of the worldwide support they received.

Now we know there is more hope for babies born with conditions like Baby Charlie’s because of the publicity and probably more parents will try to find alternatives when they are given a poor or fatal prognosis.

Here are two cases where the parents did just that and saved their children.

ABIGAIL BUETLER AND POTTER’S SYNDROME

During the fight to let Baby Charlie get experimental treatment, U.S. Congresswoman Jaime Herrera Beutler led the effort in the US Congress to get residency for Baby Charlie. That would have expedited efforts to help Baby Charlie receive the experimental treatment in the US.

Congresswoman Beutler’s interest was also personal.

In 2013, she and her husband found out that their unborn baby Abigail had Potter’s Syndrome, a fatal condition where the kidneys are missing. She and her husband were told that no one ever survived this condition and abortion was offered more than once.

They looked for other options and found there was an experimental treatment given before birth for other conditions that might work on their Abigail. The parents contacted many different hospitals before Johns Hopkins finally agreed to try.

Today, Abigail is a healthy four year old and has a kidney donated by her father a year ago. She is the first known person to survive Potter’s Syndrome, thanks to her dedicated parents.

NOAH WALL, BORN WITH LESS THAN 2% OF HIS BRAIN

Also known as the “boy with no brain”, four year old Noah Wall was born in the UK with a rare complication of spina bifida that caused fluid to compress his brain down to an estimated less than 2% brain tissue.

The condition was discovered before birth and the parents were told that even if he survived birth, he would be severely mentally and physically disabled. Abortion was offed 5 times.

But Noah did survive birth and an immediate surgery was done for his spina bifida and a shunt was installed to drain excess fluid from his brain.

Thanks to the efforts of his devoted parents and sister to keep his brain stimulated, Noah has confounded the doctors by the regrowth of his brain. When a CT scan of his brain was done years later, doctors found that Noah now has 80% of his brain tissue. Even more amazing to the doctors, Noah has developed into a charming, expressive and empathetic little boy who now attends a local primary school, despite still having  some physical and mental impairments.

This year,  a documentary about Noah was made. I saw it myself a few weeks ago on TV and I highly recommend seeing it.

And as the UK’s Daily Mirror newspaper article wrote:

“Neurosurgeon Dr Nicholson sums up the larger importance of Noah’s incredible story:

‘He teaches the medical profession that you can’t ever know’.”

CONCLUSION

Over the years, medical progress has made great strides while medical and legal ethics have deteriorated because of a “quality of life” mentality.

This has led to medically discriminatory attitudes affecting people with disabilities as I personally found out when my daughter Karen was born with Down Syndrome and a severe heart condition.

All children with disabilities deserve both a welcome and a commitment to help them have the best life possible from not only their parents but also from the rest of us.

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”.