When Children Die, Where is God?

This week, I was called to see a beautiful 2 month old baby boy I will call “Joseph” who was brought by his grandmother, mother and father to one of my city’s children’s hospitals from a small town hours away.

Joseph was born with a rare genetic condition called Trisomy 13 and needed medical care for a problem. As a nurse who has been active in medical issues involving people with disabilities since having my daughter Karen who had Down Syndrome, I was asked to help the parents oversee Joseph’s care.

Baby Joseph was doing well until an unexpected problem developed and despite heroic efforts to save him, he died early Friday morning. It was so heartbreaking for his family and the rest of us but their love for Joseph was inspiring and they said they were blessed to have had him.

So instead of my usual blog, I would like to reprint an article I was asked to write for Voices magazine in 2012 in honor of baby Joseph and his wonderful family.

When Children Die, Where is God?

On October 18, 2012, we lost our 6-year-old grandson Noah after a long and often brutal battle with a rare autoimmune disease called familial HLH (Hemophagocytic lymphohistiocytosis). Less than two months later, on December 14, 2012, twenty children around our Noah’s age — along with other victims — were viciously gunned down at Sandy Hook Elementary School by a disturbed young gunman. While the Sandy Hook tragedy affected the whole country and Noah’s death affected a smaller group of family and friends, I kept hearing the same question: Where is God or does He even exist?

The answer is that God is where He always has been when we grieve and suffer: with us and even carrying us through the roughest times, as the famous “Footprints in the Sand” poem depicts.  But what does that really mean?

Almost forty four years ago, I witnessed my first death of a child as a student nurse. Thirty years ago, my baby daughter Karen who had Down Syndrome died from complications of pneumonia. Three years ago, my oldest daughter Marie died by suicide. And now, there are Noah and the Sandy Hook victims. Personally and professionally as a nurse, I have also been with countless parents and others who have lost loved ones. I would like to share what I discovered as my personal “survival guide” for coping with grief as a Catholic woman. It consists of three decisions I made years ago.

I Choose to Live

All death is hard because it involves loss, but the death of a child seems especially cruel no matter whether the death resulted from violence, accident, or illness. No parent expects to outlive their child. When the supposed “natural order” of life and death is breached, it shakes all of us to the core even when the child is not our own. Especially in today’s secular world, even people of faith can feel lost and helpless.

When a child dies, shock, denial, and even alcohol and drugs can cushion the crushing grief for a while but eventually reality sets in. It is hard to even consider facing years and years of living without that precious person. Life is totally disrupted and even the routine of being at a hospital or bedside feels like a loss. In my case when I lost my daughters, I had to remind myself that my husband, children, and others needed me, but at times even that thought seemed totally overwhelming rather than motivating.

Recently Cesar Millan, the famous “dog whisperer” talked about his suicide attempt after a number of losses and how he learned to cope with bereavement from his experience with dogs. When dogs grieve, he recommends three things: exercise, discipline, and affection. He said he found this also helped him.

Looking back, I found that these three techniques had helped me. Exercise decreased my anxiety and pain. Discipline meant appreciating even the most mundane routines of life or work and embracing the distraction. Hugging my loved ones and friends gave me a renewed sense of connection with the world and even with God.

However, I know that life will still contain many challenges. For example, while Noah’s 2 1/2-year-old brother Eli is free of HLH, we recently discovered that Noah’s unborn baby brother Liam, who is due in April, does have the disease and will also need a bone marrow transplant. We pray that he will achieve the cure that eluded Noah but we face the future with our confidence in God intact. I will never be a cockeyed optimist but I do know that storms can be weathered and that we can be better rather than bitter as a result. (2017: Liam is now a happy, healthy 4 year old,)

I Choose to Be Happy

This is perhaps the hardest decision that I or any other bereaved parent has made but it is crucial. Years ago I was with a young mother who tragically lost her 2-year-old son. We spoke almost daily for a long time. Finally, she told me that she couldn’t see ever getting past her grief. I asked her if she had laughed yet. Embarrassed, she said she was watching a TV comedy show the night before and realized that she thought she heard a sound resembling a laugh come out of her. I told her that any laughter was the beginning of healing. I reassured her that she would laugh again and have moments of pleasure more and more in the future and that she should celebrate those moments rather than feel guilty. Life may never be “normal” in the old sense but life still had the potential to be good, perhaps even great.

From other bereaved parents who helped me, I learned that you don’t have to hold onto the grief to hold onto the love you feel for your child. That beloved child would not want your life to be blighted by his or her death any more than you would want your children to be forever sad after your death. And, in our rich Catholic tradition, we honor Jesus’ mother Mary as Our Mother of Perpetual Help, not Our Mother of Perpetual Mourning.

I now look at working toward happiness and fostering a generally cheerful outlook as a tribute to my daughters and grandson. This doesn’t mean that I am immune from being blindsided by grief and longing when I accidentally hear certain songs, see another person their age, witness another death, etc. Like probably everyone else I still have what my husband kindly refers to as my “moments” when life seems like a long, hard slog. But I continuously strive to foster an attitude of gratitude for what — and especially who — I have left. I don’t want the children’s legacy to be one where their deaths destroyed a family.

There is no set timeline for grief and bereaved parents and other relatives need to be patient with themselves and those around them. I remember the old days in medicine when grieving relatives were immediately offered a tranquilizer. I knew even then that this often just delayed the process instead of helped. There is no “good” or “bad” way of grieving. Everyone has their unique journey although it is not a sign of weakness to ask for or offer professional help when necessary.

I was surprised by the depth of grief I felt for the Sandy Hook victims and their relatives. I found it excruciating to watch the relentless TV coverage of the tragedy but I also found it hard to turn away. However, in watching the story unfold, I was struck by the fact that although I have spoken with many other bereaved parents over the last three decades, I never met a parent who said they wished their beloved child had never been born rather than to have faced the grief the parent endured. Obviously, you can never lose when you truly love and I was so glad that the Sandy Hook parents were surrounded by loving, supportive people in their community and countless other caring people throughout the country who wanted to help.

Pain is an inescapable part of the grief journey, but we may hope that we all can eventually get to the point where it is the life, not the death, of our beloved child that is the most important to us.

I Choose Not to Reject God

I’ll never forget reading about a famous and outwardly successful man who said he gave up on the idea of God when his little sister died. This gentleman wound up with a series of failed marriages and despite his millions of dollars, is bitter and unhappy.

There is no question that faith is often challenged when tragedies like the death of a child happen. But rejecting God means rejecting the greatest source of love and healing that we so desperately need at our worst times.

I eventually realized that I never did and never will have total control over my or anyone else’s life and that this is tolerable because God has a Divine Plan. I’ll never forget the wonderful Visitation nuns who taught us that life is like a tapestry that is large, beautiful, and intricate. However, on this earth we see the tapestry only from the back. We see dark colors, chaos, and loose threads that seem to go nowhere. Nothing in the tapestry appears to make sense, much less beauty. It is only when we die that God turns the tapestry around and we can finally see the amazing result. God doesn’t cause tragedies but rather brings good out of the evil we see.

It was when my Karen was born that I discovered that God is communicating with us all the time. It was then that I started noticing what I call the “miracles of grace” that God seems to send at some of our most heart-searing times. Over the years there have been some great ones: The depressed friend intent on suicide who was saved at the last moment by a smile from Karen. The young person who came back to the Church when Marie died. The many people who have volunteered to become bone marrow donors in honor of Noah and to help others like his little brother Liam.

The big miracles of grace also taught me to look for and appreciate the smaller mercies that comforted me and let me know that God is there: The woman who told me that baby Karen had done more good in her short life than most 80 year-olds. Visits from Marie’s friends who told me wonderful stories about her that I never knew before. Great friends who seemed to call at exactly the right moment when Noah was so sick.

When I was a little girl, I was often irritated by my mother’s admonitions to “offer it up for the poor souls in Purgatory” when I was hurting either physically or emotionally. It took years for me to understand that offering up my pain for such souls or any other good intention for others often acted as a kind of pain reliever and, at the same time, made my pain meaningful in a good way. I also learned that even little acts of kindness performed in memory of a loved one were a great form of honor and gratitude for those lives that are still joined to us in God’s community of love.

Today, I would ask those of you who read this to consider offering up a frustrating situation or performing some small act of kindness in honor of Noah, Karen, Marie, and the Sandy Hook victims.

Those children are now in God’s Hands. The world is still in ours and we can make it better.

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

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

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

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

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

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

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

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

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

And

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

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

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

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

CONCLUSION

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

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

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

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

Don’t Tell John McCain to Fight His Cancer?

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

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

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

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

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

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

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

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

DEALING WITH A DISMAL CANCER PROGNOSIS

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

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

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

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

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

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

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

CONCLUSION

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

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

What You Need to Know Now That the District of Columbia Has Become the Seventh Jurisdiction in US to Legalize Assisted Suicide

Despite emails and other efforts to encourage the US Congress to exercise its legal authority to stop the Washington D.C. assisted suicide law, the expected congressional action was not completed within the 30 legislative days required.

However, there may be hope on the horizon according to a  February 18, 2017 Washington Times article that said “Congress can still neutralize the Death with Dignity Act by cutting off its funding through the appropriations process.”

What went wrong with the process of nullifying the assisted suicide law in time?  No one seems to know.

But one thing we do know is that Compassion and Choices, the well-funded assisted suicide activist organization, will continue its relentless fight over and over again in every state without an assisted suicide law and in the courts to make assisted suicide legal throughout the US. But even that is not the final goal.

Ominously, we are now seeing assisted suicide leaders like influential lawyer Kathryn Tucker even criticizing the so-called “safeguards” in assisted suicide laws  as “burdens and restrictions”. She now argues that  assisted suicide should be “normalized within the practice of medicine”.

WHAT WE NEED TO KNOW AND DO NOW

We cannot just depend on lobbying our politicians and legislatures to fight assisted suicide only when such bills are introduced in states legislatures or as public initiative votes. We must constantly reinforce our message that every life is worthy of respect and care, not medical termination.

But we must also understand that the assisted suicide/euthanasia movement has had decades of experience in shaping and publicizing its lethal message through carefully crafted steps to convince the public that physician-assisted suicide must be legalized to prevent or end suffering.

As I wrote in my 2013 article “Then and Now: The Descent of Ethics”, the assisted suicide/euthanasia movement has been very busy in the last several decades. I included a short history of the movement that people should know:

The 1970s brought the invention of “living wills” and the Euthanasia Society of America changed its name to the Society for the Right to Die. The so-called “right to die” movement received a real boost when the parents of Karen Quinlan, a 21-year-old woman considered “vegetative” after a probable drug overdose, “won” the right to remove her ventilator with the support of many prominent Catholic theologians. Karen continued to live 10 more years with a feeding tube, much to the surprise and dismay of some ethicists. Shortly after the Quinlan case, California passed the first “living will” law.

Originally, “living wills” only covered refusal of life-sustaining treatment for imminently dying people. There was some suspicion about this allegedly innocuous document and, here in Missouri, “living will” legislation only passed when “right to die” advocates agreed to a provision exempting food and water from the kinds of treatment to be refused.

But, it wasn’t long before the parents of Missouri’s Nancy Cruzan, who was also said to be in a “vegetative” state, “won” the right to withdraw her feeding tube despite her not being terminally ill or even having a “living will.” The case was appealed to the US Supreme Court, which upheld Missouri law requiring “clear and convincing evidence” that Nancy Cruzan would want her feeding tube removed, but, in the end, a local judge allowed the feeding tube to be removed. Shortly after Nancy’s slow death from dehydration, Senators John Danforth and Patrick Moynihan proposed the Patient Self-Determination Act (never voted upon but became law under budget reconciliation), which required all institutions to offer all patients information on “living wills” and other advance directives. Since then, such directives evolved to include not only the so-called “vegetative” state and feeding tubes but virtually any other condition a person specifies as worse than death and any medical care considered life-sustaining when that person is deemed unable to communicate.

But this “choice” is becoming an illusion. In 1999, Texas became the first state to pass a medical futility law to allow doctors and/or medical committees to  override advance directives and patient or family decisions to continue life-sustaining treatment on the basis that doctors and/or medical committees know best when to stop treatment.

In the 1990s, Jack Kevorkian went public with his self-built “suicide machines”  and the “right to die” debate took yet another direction. By the end of the decade, Oregon became the first state to allow physician-assisted suicide. At first, the law was portrayed as necessary for terminally ill people to die with allegedly unrelievable pain. Within a short time, though, it was reported that “according to their physicians, the patients requested assistance with suicide because of concern about loss of autonomy and control of bodily functions, not because of concern about inadequate control of pain or financial loss.”

Other states eventually followed Oregon but efforts to pass assisted suicide laws often failed in other states so Compassion and Choices (the former Hemlock Society) promoted palliative/terminal sedation and VSED (voluntary stopping of eating and drinking) as a legal alternative to assisted suicide in states without such laws.

Compassion and Choices has found much success in working with sympathetic news outlets and pollsters to encourage the public and even medical professionals to support assisted suicide.

Even TV’s popular Dr. Phil McGraw hosted a 2012 segment featuring a Canadian woman who wanted her adult disabled children to die by lethal injection. Ironically, the mother, along with former Kevorkian lawyer Geoffrey Feiger, argued that removing their feeding tubes was an “inhumane” way to end the lives of the adult children. Tragically, when the studio audience was polled, 90% were in favor of lethal injections for the disabled adults. Disability organizations protested after the show, writing that “By conveying social acceptance and approval of active euthanasia of individuals with disabilities by their family members, the segment threatens their very lives”.

Exploiting the natural fear of suffering most people have has also led to a growing acceptance of the premise that it can even be noble to choose death instead of becoming a burden on family members or a drain on society. It is up to us to combat this attitude of despair by  not only educating ourselves and others about the facts and dangers of assisted suicide but also by offering hope and support to those of us most at risk.

My Trip to Georgetown University: The Inspiration of a New Generation

I was honored to be asked to give a talk at the annual Cardinal O’Connor Conference On Life at Georgetown University in Washington D.C. on January 28, 2017, the day after the annual March for Life. To be honest, I believe that I received more from the conference and students than I could ever contribute!

The title of my talk was “Killing or Caring? A Nurse’s Professional and Personal Journey”. I spoke about the progression of the Culture of Death through 4 professional and personal stories from abortion through assisted suicide. My stories included my 1982 fight to save the life of my newborn daughter with Down Syndrome and a severe heart defect against some lethal medical discrimination based on her disability. The second story was about how a young man in a car accident in the early 1970s “miraculously” recovered when we nurses refused to give up after the doctor initially predicted that the young man would at best be a so-called “vegetable” if he lived. The third story was about my daughter who died by suicide in 2009 at the age of 30 using an assisted suicide technique she read about and the tragedy of suicide contagion when assisted suicide is normalized and even glamorized. My last story was how I was almost fired from my ICU unit when I refused to participate in a withdrawal of treatment/terminal sedation euthanasia.

I was so moved by the enthusiastic response of the students to the message that the Culture of Death cannot be ignored or tolerated because evil will always expand until we stop it by demanding the recognition that every life is valuable and worthy of protection. I also loved getting a chance to talk to so many of the students after the talk. They inspired me!

Even on my trips to and from Georgetown University, I met two other inspiring young people. One was a lovely young African-American woman seated next to me on the flight to Washington, D.C. She told me about her career as a police officer patrolling the toughest area in Oakland, California. She also spoke about her passion to help the community and how she embraced the challenges of her choice. Who could not be inspired by that?

The Uber driver who drove me to the airport after my talk was similarly inspiring. It turned out that he was a young nurse who emigrated here from Ethiopia last year and was now studying for his national nursing exam to practice in the U.S. His story was fascinating and when he learned I was a veteran nurse, we had a wonderful discussion about nursing as a great career.

CONCLUSION

We sometimes hear the pessimistic opinion that our next generation is self-absorbed and only interested in money and the next cultural fad.

Based on my experiences in Georgetown, I think that our next generation may prove to be one of the best!

Dr. Anne Bannon, Hero For Life

anne-reading

Dr. Anne Bannon “reading” her old pro-life insert. June 2016.

My friend and hero, Dr. Anne Bannon, died at the age of 89 on January 30, 2017.

Dr. Anne Bannon became a pediatrician decades ago at a time when women were usually discouraged from entering the almost exclusively men’s profession of medicine. But feisty and stubborn, Dr. Anne persevered to become a great doctor and the Chief of Pediatrics at City Hospital in St. Louis.

When the 1973 Roe v. Wade Supreme Court decision to legalize abortion came down, Dr. Anne was surprised and horrified. She went on to found Doctors for Life here in St. Louis.

One of her biggest projects was yearly producing and paying for a multi-page insert into the St. Louis Post-Dispatch (see picture), a newspaper that strongly supports legalized abortion and now assisted suicide.

Dr. Anne’s insert was full of facts but perhaps most importantly, it also listed the names of doctors against abortion. Every year, she would personally call every doctor she could and ask them if they opposed abortion and would agree to be listed in the insert. Despite the effort involved, Anne refused any help in contacting these doctors.

Every year, the list of doctors was long and it took courage for these doctors to agree to be listed. My own obstetrician-gynecologist told me that he received calls from other doctors who told him that they would never refer another patient to him if he continued to be listed in the insert. My doctor refused to be intimidated and he told me that publicly standing up for life was more important than possibly hurting his practice. In the end, his practice wound up even stronger.

DR. ANNE AND I

I was introduced to Dr. Anne in 1982 when my daughter Karen was born with Down Syndrome and a severe heart defect. I told her about several doctors who tried to undermine our decision to have our daughter medically treated exactly the same as any other child with a heart condition.

Of course, Dr. Anne was supportive and in 1983, even introduced me to Dr. C. Everett Koop, then Surgeon General under President Ronald Reagan, so that I could tell him my story and advocate for a national hotline that parents of newborns with any disability  could call to find resources to help their children.

Dr. Anne recognized that legalized abortion was leading to increasing acceptance of deliberate death decisions for born people, especially the disabled. Never married with no family nearby, she asked me to be her durable power of attorney for health care because she wanted truly ethical health care in case she became unable to speak for herself.

Several years ago, Dr. Anne developed dementia, probably Alzheimer’s, and was in a nursing home on Medicaid. By the time she died, she was in the late stages and unable to walk or even speak clearly  most of the time. But she was excited and delighted when we, her friends, visited her in the nursing home even when she could not remember our names. We were her St. Louis family and we loved her.

Dr. Anne fractured her hip last Saturday night and needed surgery. She did well in surgery but suddenly became critically ill at the end of the surgery . But, to the doctors’ surprise and just when they were ready to give up, Anne suddenly got better. She was taken to intensive care on a ventilator and unconscious but stable. Anne’s famous fighting Irish spirit came out one last time and we were proud of her.

Dr. Anne was in critical but stable condition and apparently in a coma when we called a wonderful local priest to give her the Catholic Sacrament of the Anointing of the Sick, previously known as Last Rites or Extreme Unction. According to one friend and the doctor attending, her face seemed to soften during the sacrament and she even blinked and put her tongue out. That in itself was amazing.

After the sacrament, her vital signs immediately started to drop and despite an increase in her medications, Dr. Anne died peacefully and in no distress a few hours later. We knew she wanted the sacrament and I believe that she hung on until she received it.

As a former hospice nurse, I have often seen this kind of hanging on by dying patients until an important matter was resolved.

So, to the end, Dr. Anne was still teaching about the value of all life.

Rest in peace, Dr. Anne Bannon!

High Priority: Public Comments Needed on ANA’s New Draft Position Paper on Denying Food and Water

Although the American Nurses Association (ANA) claims it represents the over 3 million US nurses, only a tiny fraction of nurses actually belong. ANA does not give out the actual number of members. I used to belong both my state nursing organization as well as the ANA to try to uphold good nursing ethics and conscience rights for nurses. I finally gave up when my state organization would not address even the conscience rights of nurses in the Nancy Cruzan feeding tube case. I gave up on the ANA when I discovered that the ANA opposed a ban on partial birth abortion without notifying its membership. I only found this out when I watched a TV show on politics mentioning the ANA position. I called the ANA public relations department myself to protest both their position and not notifying members like me and resigned.

Yesterday, I received a call from a nurse in another state who sent me the website for public comments due by 5 pm ET 12/1/2016 about a proposed new ANA position on nutrition and hydration at the end of life.

The proposed position paper is 9 pages long and I sent the following comments with the referenced lines as requested. It would have taken me many pages to address all the issues:

Lines 18-24.  In the past, the hospice principle of never prolonging or hastening death at the end of life was paramount. Now, this has been subjugated to a legalized autonomy (even when exercised by a third party) to decide when to hasten death.

However, nurses are professionals whose integrity depends on proper respect for their conscience rights, especially when it comes to decisions about hastening death.  This concern is absent in this draft.

We do have such a provision in Missouri law that states:

Missouri Revised Statutes
Section 404.872.1

Refusal to honor health care decision, discrimination prohibited, when.

404.872. No physician, nurse, or other individual who is a health care provider or an employee of a health care facility shall be discharged or otherwise discriminated against in his employment or employment application for refusing to honor a health care decision withholding or withdrawing life-sustaining treatment if such refusal is based upon the individual’s religious beliefs, or sincerely held moral convictions.

(L. 1992 S.B. 573 & 634 § 7)

Line 88: There is no definition of “severe neurological conditions”.
Line 90 on “Dementia, recognized as a terminal illness associated with anorexia and cachexia”.  As a former hospice nurse and caregiver for my mother until her death as well as a volunteer for people with dementia, this is an alarming and potentially dangerous assertion. No one should have to die by dehydration and indeed many people with dementia can be spoon-fed like my mother until natural death. I have likewise seen several people begging for food or water but denied because of a decision not to place a feeding tube or spoon feed.

Lines 101-104. VSED as described is really assisted suicide and implicitly changes ANA opposition to medically assisted suicide.

Also, in a New York Times article in October titled “The VSED Exit: A Way to Speed Up Dying, Without Asking Permission”, Dr. Timothy Quill (past president of the AAPHM and the doctor arguing for the constitutionality of assisted suicide in the 1997 Vacco v Quill US Supreme Court case) was quoted as claiming that while VSED is “generally quite comfortable at the beginning”, he also states that “You want a medical partner to manage your symptoms,” because “It’s harder than you think.”

How hard?

In 2000, Quill and Dr. Ira Byock (a palliative care doctor who speaks against legalizing physician-assisted suicide while also supporting VSED and terminal sedation) wrote an article titled “Responding to Intractable Terminal Suffering: The Role of Terminal Sedation and Voluntary Refusal of Food and Fluids” . The patient was a doctor who wanted to die before his symptoms became worse. He was given a morphine drip that had to be increased to total unconsciousness on day 10 because he became “confused and agitated and began having hallucinations”.

Lines 114-115 cite “Psychological, spiritual, or existential suffering, as well as physical suffering” but only say that “Symptom control is imperative” rather than oppose participation in VSED  for people who are not even terminally ill.

Lines 149-150 state that “Decisions about accepting or forgoing nutrition and hydration will be honored including those decisions about artificially delivered nutrition as well as VSED”. This blanket statement destroys the conscience rights of nurses as well as our duty to advocate for our patients’ best interests. (Emphasis added)

Ironically, the ANA’s 2010 position paper on reproductive rights (i.e. abortion) states that:

“Also,nurses have the right to refuse to participate in a particular case on ethical grounds. However, if a client’s life is in jeopardy, nurses are obligated to provide for the client’s safety and to avoid abandonment.” (Emphasis added) Apparently, the ANA is proposing that the right to refuse to participate ends when the death of the patient is deliberately intended.

CONCLUSION

Just this week, it was reported that a union for Australian nurses is backing voluntary euthanasia. The Australian Nursing and Midwifery Federation (SA branch) is even partnering with other Compassion and Choices-style groups in Australia to pass a voluntary euthanasia bill. This could well be our future here in the US if we do not respond.

As nurses and citizens, we need to fight for truly patient-safe health care by responding to groups like the ANA through comments sections like the one above (which ends December 1) and in the media. We must also support and insist on ethical health care providers for ourselves and our loved ones as well as protecting our patients. As much as we can, we can also help state and national organizations that fight against euthanasia.

Especially if you are a nurse, consider joining the National Association of Pro-Life Nurses and following our Facebook page.

Our profession, our patients and even our nation are at stake!

 

 

New York Times Article, Dr. Timothy Quill Promote Physician-Assisted Suicide by Starvation and Dehydration

Physician-assisted suicide is not just about someone taking a lethal overdose of medicine prescribed by a doctor. For many years, Compassion and Choices, the former and more appropriately named Hemlock Society) has also promoted VSED (voluntary stopping of eating and drinking) as just other end of life option they insist is legal in all states, even those without an assisted suicide law.

Now in a disturbing new New York Times article  “The VSED Exit: A Way to Speed Up Dying, Without Asking Permission , columnist Paula Span (who admits that she was “also a speaker, and received an honorarium and some travel costs.”) writes about conference on VSED, “billed as the nation’s first, at Seattle University School of Law which drew about 220 participants — physicians and nurses, lawyers, bioethicists, academics of various stripes, theologians, hospice staff.” In her article, Ms. Span acknowledges that VSED “causes death by dehydration, usually within seven to 14 days.” (Emphasis added)

Thus, VSED death is no more “natural” than physician-assisted suicide by lethal overdose. It just takes longer.

One of the featured speakers was Dr. Timothy Quill, described as “a veteran palliative care physician at the University of Rochester Medical Center.” Unmentioned is that Dr. Quill is a long-time activist for physician-assisted suicide and 2012 president of the American Academy of Palliative and Hospice Medicine which is now “neutral” on assisted suicide. He was also the respondent in the 1997 US Supreme Court Case Vacco v Quill arguing for the constitutional right to physician-assisted suicide.

VSED AS A “REASONABLE” OPTION FOR “PEOPLE WITH SERIOUS ILLNESSES WHO WANT TO HASTEN THEIR DEATHS”

Although Dr. Quill claims that VSED is “generally quite comfortable at the beginning”, he also states that “You want a medical partner to manage your symptoms,” because “It’s harder than you think.”

How hard?

In 2000, Quill and Dr. Ira Byock (a palliative care doctor who speaks against legalizing physician-assisted suicide while also supporting VSED and terminal sedation) wrote an article titled “Responding to Intractable Terminal Suffering: The Role of Terminal Sedation and Voluntary Refusal of Food and Fluids”.

In the article, they wrote about the case of BG, a radiology doctor with an eventually fatal brain tumor, who “did not want to die but was fearful of becoming physically dependent and intellectually impaired.”

As they wrote: “BG stopped eating and drinking. The initial week was physically comfortable and personally meaningful.” However, “On day 10, BG became confused and agitated and began having hallucinations. The peace and comfort that he and his family had achieved began to unravel.”

His intravenous morphine drip to control his headaches was increased to cause terminal sedation and he died.

Byock and Quill conclude that   “Medicine cannot sanitize dying or provide perfect solutions for all clinical dilemmas. When unacceptable suffering persists despite standard palliative measures, terminal sedation and voluntary refusal of food and fluids are imperfect but useful last-resort options that can be openly pursued.” (Emphasis added).

THERE ARE NO RELIGIOUS OBJECTIONS TO VSED?

In her article, Ms. Span makes an effort to make VSED sound morally and ethically acceptable when she states:

“Moreover, major religious groups have yet to declare whether they consider VSED an acceptable act of self-determination or a suicide, anathema in most faiths.”

Actually, many people-religious and non-religious- as well as disability groups like Not Dead Yet have objected to VSED.

And for Catholics, the Vatican Charter for Health Care Workers specifically states :

“The administration of food and liquids, even artificially, is part of the normal treatment always due to the patient when this is not burdensome for him: their undue suspension could be real and properly so-called euthanasia.” (Emphasis added)

In addition, the Charter also addresses the concept of terminal sedation:

Sometimes the systematic use of narcotics which reduce the consciousness of the patient is a cloak for the frequently unconscious wish of the health care worker to discontinue relating to the dying person. In this case it is not so much the alleviation of the patient’s suffering that is sought as the convenience of those in attendance. The dying person is deprived of the possibility of ‘living his own life’, by reducing him to a state of unconsciousness unworthy of a human being. This is why the administration of narcotics for the sole purpose of depriving the dying person of a conscious end is ‘a truly deplorable practice’.” (Emphasis added)

EXPANDING VSED

As Ms. Span observes there are “obstacles” still to overcome in the quest for universal acceptance of VSED including whether people with dementia can “pre-choose” VSED by request or “living will”  while still well.  Another issue includes legal cases where even non-terminal residents or their relatives sue to make nursing homes stop even spoon-feeding.

The Compassion and Choices death machine rolls on and in many different directions but the goal remains death on demand. Apathy is not an option.

Is Compassion and Choices Aiming to Become the “Planned Parenthood” of Euthanasia?

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

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

THE PALLIATIVE AND HOSPICE CONNECTION

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

Currently, Oregon reports that 92.2% of its physician-assisted suicides were enrolled in hospice care and in Washington state,  93% of its assisted suicides “were assisted by an EOLWA (Compassion and Choices) volunteers”. 

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

No wonder Compassion and Choices lists as one of its accomplishments that it:

Pioneered the medical model of aid in dying that helps ensure that doctors can ethically practice aid in dying in an open, legitimate and accessible way, and integrates the option into patients’ end-of-life care. The culmination of that work was the publication of clinical criteria in the Journal of Palliative Medicine in December 2015. (Emphasis added)

The first line of this article ““Clinical Criteria for Physician Aid in Dying” (their preferred name for physician-assisted suicide) is:

“More than 20 years ago, even before voters in Oregon had enacted the first aid in dying (AID) statute in the United States, Timothy Quill and colleagues proposed clinical criteria AID.”  (Emphasis added)

Timothy Quill, MD was the 2012 president and recipient of the Visionary award  of the American Academy of Palliative and Hospice Medicine. Dr. Quill also was the respondent in the 1997 US Supreme Court case Vacco v Quill arguing for physician-assisted suicide as a constitutional right. He lost unanimously then.

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

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

WHERE THE MONEY AND POWER IS

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

The priorities on its agenda include:

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

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

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

Also a priority is “Public Education and Engagement”.  Compassion and Choices bemoans that one survey showed “22 percent of those aged 75 and older had neither written down nor talked to someone about their treatment preferences at the end of life.”

So naturally Compassion and Choices recommended strengthening the Centers for Medicare and Medicaid Services’ proposal to “reimburse doctors for communicating with patients about whether and how they would want to be kept alive if they become too sick to speak for themselves.”  This of course involves “living wills” and other advance directives that give people a list of some medical treatments or care to automatically refuse by a check mark. Unfortunately but tellingly, these directives include no explanation of the treatments themselves or their risks and benefits which is crucial for the informed consent or refusal required if the person was making the decision while fully conscious.

CONCLUSION

Compassion and Choices has been very involved in many legal cases about assisted suicide including the 1997 US Supreme Court’s Vacco v Quill decision finding no constitutional right to physician-assisted suicide. Undeterred, the organization continues to push for legalization of assisted suicide by fighting state by state while hoping for a possible future US Supreme Court decision that, like Canada’s in 2015, would legalize medically assisted suicide throughout the country.

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

As an article by Ashton Ellis has astutely observed ,

“The effort by pro-euthanasia group Compassion & Choices to use Brittany Maynard’s story to push physician-assisted suicide is part of a larger strategy. When talking about end-of-life issues, a strategically crafted frame points to only one logical conclusion: I’d rather be dead.”

Why Should Physician-Assisted Suicide Laws Grant Special Privileges?

A May 2016 Gallup poll titled Euthanasia Still Acceptable to Solid Majority in US”   reports that now 69% of those surveyed agree that “doctors should be allowed by law to end a patient’s life by some painless means” if the person “has a disease that cannot be cured” and “if the patient and his or her family request it”.  (Emphasis added)

There is also reported  growing support among doctors  for medically assisted suicide.

This is alarming but should not be surprising in view of the intense and usually one-sided portrayal  of assisted suicide as “courageous” and honorable while unassisted death is routinely portrayed as agonizing to both the family and the patient.

However, there are few healthcare providers who actually want to personally participate in ending a life even when they say they support legalizing assisted suicide. This is one reason why Compassion and Choices, the former Hemlock Society, has been involved in most of the assisted suicides in Oregon and Washington.

The reluctance of most doctors and nurses to participate in assisted suicide has come about despite the unique and special protections given to healthcare providers who participate in medically assisted suicide that can actually encourage healthcare providers to participate without fear of legal consequences.

Note two of these provisions in the Oregon law :

“The Health Services shall make rules to facilitate the collection of information regarding compliance with ORS 127.800 to 127.897. Except as otherwise required by law, the information collected shall not be a public record and may not be made available for inspection by the public.” (Only an “an annual statistical report of information” is made public.) (Emphasis added.)

And

No person shall be subject to civil or criminal liability or professional disciplinary action for participating in good faith compliance with ORS 127.800 to 127.897. ” (Emphasis added.)

There is also no requirement that the doctor or anyone else witness or even be present at the lethal overdose.

But why are the activists and  lawyers who write these laws not challenged when they purposely omit  the stringent documentation and oversight required for any  other medical intervention by relying on doctors’ self-reporting the process  while also granting these doctors virtual immunity from any legal, civil or professional liability  for coercion, complications, abuse etc.?

One answer is that this allows the media and even doctors like Dr. Ezekiel Emanuel (one of the architects of Obamacare) to declare:

“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 second answer is that these provisions allow assisted suicide doctors  (who obviously have more in common with the infamous Dr. Jack Kevorkian than the iconic Marcus Welby, MD of the 1970s)  to privatize the death and thus prevent any real investigation, followup or even serious medical research as well as allowing the coverup of any problems.

Apparently, nothing can be allowed to interfere with the carefully manufactured image of a kindly doctor helping a patient in excruciating pain to have a quick painless demise.

No other area of medical practice-even lethal injection execution-is allowed such secrecy and immunity.

Legislatures and the public need to know and challenge these outrageous provisions as well as being informed about the personal and societal dangers of assisted suicide itself. We must demand truth, transparency and accountability, especially when life and death are at stake.