You Don’t Want to be a Burden, Do You?

An April 13, 2018 USA Today op-ed titled “Make an End-of-life plan or Lose your Money and Choices in your Dying Days” by Hattie Bryant begins with the statement “End-of-life care can bankrupt your family and rob you of choices. End the denial about dying. Make a plan in case you end up seriously ill and frail.” (Emphasis added)

Ms. Bryant is very upfront about using the economic argument about aging and the enormous toll it can take financially and personally on the family as well as medical costs. She states that “in 2011, Medicare spent $554 billion and 28%, or about $170 billion, on patients’ last six months of life. After $170 billion is spent, those patients are still dead.”

Her solution is a new kind of economic advance directive she developed (and is selling as a book titled “I’ll Have It My Way: Taking Control of End-of-Life Decisions“ ) “that deals with how you want your funds spent when you are seriously ill or frail.” (All emphasis added)

SHOULD WE HAVE A “DUTY TO DIE”?

Back in 1984, Governor Richard Lamm of Colorado found himself in the middle of a firestorm of outrage when, as the New York Times reported, “Governor Lamm Asserts Elderly, If Very Ill, Have a ‘Duty to Die”.

Here is an excerpt from the article:

Elderly people who are terminally ill have a ”duty to die and get out of the way” instead of trying to prolong their lives by artificial means, Gov. Richard D. Lamm of Colorado said Tuesday.

People who die without having life artificially extended are similar to ”leaves falling off a tree and forming humus for the other plants to grow up,” the Governor told a meeting of the Colorado Health Lawyers Association at St. Joseph’s Hospital.

”You’ve got a duty to die and get out of the way,” said the 48-year-old Governor. ”Let the other society, our kids, build a reasonable life.”

This philosophy was echoed in 2014 by one of the architects of Obamacare, Dr. Ezekiel J. Emanuel, when he wrote “Why I Hope to Die at 75-An argument that society and families—and you—will be better off if nature takes its course swiftly and promptly” for The Atlantic Magazine.

At age 57 at the time, Dr. Emanuel states that while death is a loss, there “is a simple truth that many of us seem to resist: living too long is also a loss” that “renders many of us, if not disabled, then faltering and declining, a state that may not be worse than death but is nonetheless deprived. It robs us of our creativity and ability to contribute to work, society, the world. It transforms how people experience us, relate to us, and, most important, remember us. We are no longer remembered as vibrant and engaged but as feeble, ineffectual, even pathetic.” (Emphasis added)

He states that he will stop trying to prolong his own life by age 75.

CONCLUSION

Helping to care for many terminally ill or seriously disabled relatives, friends and patients of all ages for many decades both professionally and personally, I have a different perspective.

We are all born dependent on others for care and many of us need at least some help from others at the end of our lives. This can be hard at times-as even parents of newborns will attest-but the rewards are great both for the helper and the person being helped.

I remember when my mother with Alzheimer’s and terminal thyroid cancer was dying in 1988. It wasn’t the most convenient time for us, to say the least. I was a suddenly single parent with three young children and financially struggling.  My mother no longer recognized me but, as I told a friend, the most important issue was that I recognized her.  As a family, we did what was medically reasonable for my mother to help her without either prolonging or hastening her dying.

Taking care of my mother was a wonderful, if occasionally difficult, experience and I am grateful that we were able to keep her at home almost to the very end.

The final result was that my mother was kept  safe, comfortable and loved. Her funeral was truly a celebration of her life and my children learned an important lesson about the circle of life and taking care of each other. We still talk fondly about their time helping with grandma, even after 30 years.

When I made out my own advance directive, I made sure that it was as protective as possible against a hastened death. I don’t fear death. I do fear the bioethicists  and others who use economics and fear to push especially older people into prematurely signing away their rights to even basic care and what this does to our society.

Conscientious Objection and the Duty to Refer

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

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

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

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

The authors even state that:

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

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

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

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

and

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

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

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

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

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

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

CONCLUSION

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

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

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

 

The Opioid Crisis and Suicide

Statistics show that more than 115 Americans a day die after overdosing on opioids. Opioids  are a class of drugs that include both illegal drugs like heroin and legal prescription pain relievers such as codeine and morphine.

We are told that we have an opioid crisis that needs immediate solutions such as suing drug manufacturers, spending more on drug treatment centers, making drugs like Narcan more available to reverse the overdose if given in time, prescribing few-in any-opioids after surgery, adding more drug education in schools, etc.

Some of these ideas are worthy but are we missing a big existential part of the problem?

In a recent Kaiser Health News article asking  “How Many Opioid Overdoses are Suicides?”, reporter Martha Bebinger relates a heartbreaking interview with a young drug addict:

“She wanted to be dead, she said, glancing down, a wisp of straight brown hair slipping from behind an ear across her thin face.

At that point, said Ohlman, she’d been addicted to opioids — controlled by the drugs — for more than three years.

“And doing all these things you don’t want to do that are horrible — you know, selling my body, stealing from my mom, sleeping in my car,” Ohlman said. “How could I not be suicidal?…You realize getting clean would be a lot of work,” Ohlman said, her voice rising. “And you realize dying would be a lot less painful. You also feel like you’ll be doing everyone else a favor if you die.”” (Emphasis added)

Having had a daughter with drug addiction and relapses for 16 years who finally succumbed to suicide in 2009 using a horrific assisted suicide technique, I recognize the same pain this young woman expresses. I also know the frustration and fears of families and friends desperate to help.

The Kaiser article goes on to quote Dr. Maria Oquendo, immediate past president of the American Psychiatric Association, who said that “[Based on the literature that’s available], it looks like it’s anywhere between 25 and 45 percent of deaths by overdose that may be actual suicides,” *(Emphasis added).

The article also quotes a pair of distinguished economists who say that “opioid overdoses, suicides and diseases related to alcoholism are all often ‘deaths of despair’” caused by “underlying deep malaise”. (Emphasis added)

We have both a suicide and a drug crisis that often overlap due to an overwhelming sense of hopelessness and helplessness.

EXAMINING THE SCOPE OF THE PROBLEM

As psychiatrist Dr. Oquendo notes in a related article, US suicide rates were declining until they “abruptly stopped in1999” and now have increased 25%, especially among adolescent girls.

Now, there are about 123 reported suicides per day in the US  but the real figure may be as high as 3 to 5 times that number because many suicides go unreported as suicide  because of reasons like the stigma of suicide and the difficulty in determining intent.

Additionally, nearly half of US adults have a close friend or family member with a current or past drug addiction.

We have more drug treatment centers and suicide prevention programs than ever (with unfortunately varying levels of quality and allowed family involvement) but the problems continue to persist and even worsen.

CONCLUSION

What has happened in the US since suicide rates started rising two decades ago and drug abuse has surged?

First, we must recognize that American culture, law and politics changed radically in the last two decades and this has drastically affected all of us, especially our young people. For example, the legalization and glamorization of assisted suicide and mind altering drugs like recreational marijuana have not helped anyone want to embrace personal responsibility and caring for others as worthy goals.

We also now have a culture where religious values are often derided as judgmental and even harmful to social progress. Obscene language and violent, hypersexualized entertainment is applauded as liberating rather than offensive. Having children is portrayed as more of a potential economic, professional and personal burden rather than a joyful manifestation of love, commitment and family.

We owe our society and especially our young people a more hopeful, less selfish view of life rather than just the pursuit of  money, fame and pleasure.

Without a strong foundation of love, strong ethics and ideals, the resilience required to weather both the ups and downs of life without drugs or succumbing to suicide can be lost.

As much as we need good, affordable suicide and drug treatment programs, we adults also need to be examples of a truly “good life” and step up to fight the dangerous influences  that are killing our young people.

And we must never give up!