end-of-life

“Rational” Suicide and the “Elderly”

nancyvalko assisted suicide, culture, disability, end-of-life, family

An article in the May, 2018 issue of the Journal of the American Geriatrics Society titled “Rational Suicide in Elderly Adults: A Clinician’s Perspective”  by Meera Balasubramaniam, MD, MPH  recently appeared in both medical and nursing news sources.

Dr. Balasubramaniam begins with a case study of  “Mr. A” who at age 72 is considered a “baby boomer”, along with a whole section on the “baby boomer” generation-those born between 1946 and 1964 (ages 54-72).

Mr. A was a retired widower who had recently undergone successful cancer surgery and used a walker. He had no terminal illness but  he told a nurse that he always entertained the idea of ending his life “while I’m still doing well” and that if his health showed signs of failing or became too arduous, he would consider suicide. He stated “I’ve lived a good life. I’ll see how it goes, but it’s better to die well in my early 70s than have a life in which I have to be anxious before every doctor’s visit or have repeated surgery or end up in a nursing home.” (Emphasis added) A psychiatric consult showed no mental health problem.

Dr. Balasubramaniam says she wrote this article to “explore whether ethical arguments in favor of physician–assisted suicide apply to elderly adults who are tired of living but are not terminally ill”. (Emphasis added)

While claiming to not take a view on “whether suicide in non–terminally ill elderly adults can be rational”,  Dr. Balasubramaniam states that “It is important to consider the possibility that the combination of negative perceptions toward aging and dependency, greater social isolation, increasing access to drugs, greater need for autonomy, and an overall generational familiarity with suicide may be accounting for a higher proportion of older adults like Mr. A expressing the wish to end their lives on their own terms”. (Emphasis added)

DEATH AND THE BABY BOOMERS

It may seem incredible to even consider “tired of life” and older age as a “rational” reason for medically assisted suicide. However, Holland and Switzerland already allow it and the article itself cites the UK group “My Death My Decision” (formerly SOARS, The Society for Old Age Rational Suicide) that supports the idea that mentally competent older adults should have the right to assisted suicide rather than face an uncertain life that may be “fraught with frailty and dependence”.

As a Baby Boomer myself, we baby boomers were among the first teenagers exposed to a growing societal acceptance of new concepts like divorce , “free love” with the help of the birth control pill and legalized abortion, the “population bomb” predicting global cataclysm if people didn’t stop reproducing, the use of illegal drugs like marijuana and LSD for recreation, the rejection of religious principles and the slogan “don’t trust anyone over 30”.

So perhaps it should not be puzzling that people over 55 comprised the majority of people dying by physician-assisted suicide in the latest Oregon report since we saw so many of the traditional civil and moral moorings in society pulling loose when we were at an especially vulnerable age.

CONCLUSION

As one sage said, “Old age ain’t for sissies!” But, of course, this is not a “rational” excuse for legalizing assisted suicide for anyone-of any age.

Still, our older citizens are an especially high risk group for elder abuse, household accidents, money scams, social isolation, age-related medical bias and poor or even dangerous nursing home care.

Having friends, family and a meaningful purpose in life becomes harder when older people see their loved ones die or move far away and physical or mental limitations develop in themselves. Many older people fear losing their independence as well as being a “burden” on others.

Medically assisted suicide is not the answer but what else can we do to help?

We can start with our own family members, friends and neighbors. Like all of us, older people need to feel loved and appreciated. Look for ways to assist an older person that he or she might not have considered or be too embarrassed to ask about.

When I was a young wife and mother, our church parish started a Good Samaritan program to identify and help people with special needs of any age. It was a great success and our parish became more inclusive and accessible to everyone, especially the elderly. That was a benefit to all of us.

Other programs such as visiting one person for one hour each week in a local nursing home have helped some parishes to combat the sad reality I have seen that few people in nursing get  visitors, especially people with dementia.

Many of us naturally feel uncomfortable about going to nursing homes, but such places are usually thrilled to have volunteers and most have training programs.

Personally, my first volunteer activity was as a young teenager in a nursing home and it changed my perception of “old people” and life itself. I was amazed by the wisdom and stories the residents told as well as how much they appreciated anything I did. It was a great experience for a shy, gawky teen like myself.

Many years later, I took my young children to visit their grandmother in a nursing home after telling them what to expect in terms of sights, smells and sounds. Afterwards, my youngest daughter asked why everyone wanted to touch her leg while I held her. When I explained that the residents rarely saw a 2 year old and were so glad to see her, she grinned and said “OK!”.  She understood even at that young age.

In a society that seems to constantly celebrate youth and health, we need to make sure that our elderly also feel valued and supported.

And we might just save a life!

 

 

 

 

Alfie Evans and the Shocking UK Gosport Independent Panel Report

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

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

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

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

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

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

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

THE GOSPORT INDEPENDENT PANEL REPORT

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

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

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

CONCLUSION

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

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

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

Unfortunately, the answer may be no.

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

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

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

Whatever Happened to Common Sense at the End of Life?

nancyvalko end-of-life, law, medical ethics

In 2007, I wrote an article titled “Whatever Happened to Common Sense at the End of Life?” for Voices magazine. I wrote about real life situations that people and their families faced along with the principles involved. I am reprising that article here in response to the many questions I receive about dealing with such difficult situations.

Unfortunately since I wrote this article, the situations people and their families face have become worse: More states have legalized assisted suicide and have expanded the definition of “terminal”,  more parents of babies with disabilities are fighting for their  right to treatment , voluntary stopping of eating and drinking (VSED) is promoted as a legal way to kill oneself, etc.

I have and will continue to write on these newer issues but the basic principles are still valid.

Whatever Happened to Common Sense at the End of Life?

Withdrawal of treatment, “living wills”, terminal sedation, assisted suicide, organ donation, etc. Currently, it’s virtually impossible to escape all the death talk in the media and elsewhere. For example, if you are admitted to a hospital for almost any reason, you or your relatives will be asked if you have or would like information about documents formalizing your “end-of-life” choices.

But despite all the hype, not every situation involving end-of- life issues has to involve wrestling with big ethical dilemmas. Many times, there are relatively simple considerations or strategies that actually used to be commonly employed until the introduction of the so-called “right to die”. Accurate information, common sense and a good understanding of ethical principles can cut through the “right-to-die” fog and make a person’s last stage of life as good as possible both for the person and his or her family.

Here are just four examples:

Prolonging Death or Providing Comfort?

I once cared for Mary (all names have been changed), an older woman who was near death with cancer. Her loving family took her to the doctor when she became confused and severely short of breath. An x-ray showed a fluid buildup near her lungs. The doctor inserted a long needle, aspirated the fluid and Mary immediately improved. However, the family was still worried. They asked me what they should do if the fluid built up again because they were afraid that this would prolong her death. I told them that the primary question now was comfort. If, for example, fluid did slowly build up again but Mary was comfortable, it could be burdensome to aspirate the fluid. However, if Mary did develop severe breathing problems that could not be controlled by medication, they might want to consider another aspiration since the goal was to make Mary as comfortable as possible during the short time she had left.

“Why, that’s just common sense!” the daughter exclaimed. Exactly!

Mary soon peacefully died at home with her family, never needing another medical intervention.

Families often suffer undue fear about prolonging death when a family member is dying and this can spoil what can be one of the most meaningful times in life.

After almost 40 years as a nurse, I have found that barring murder or other such situations, people generally die when they are ready to die even regardless of medical interventions. When death is imminent, the big priority should be comfort rather than whether a person might live a few hours or days longer.

What if an Elderly Person Doesn’t Want Treatment?

One of my friends was very worried about his elderly grandmother whose health seemed to be declining. She ate very little and said she was ready to die. Efforts to improve grandma’s nutrition didn’t work and she refused a feeding tube. My friend was finally able to persuade her to at least try a small feeding tube inserted through her nose.

Within a short time, there was a dramatic improvement in grandma’s mood and physical functioning. According to my friend, she was back to where she was 10 years before and the feeding tube was removed. (She lived comfortably several more years.)

Too often, doctors and even families assume that an elderly person who doesn’t feel well is just dying of old age without exploring possibilities such as depression, poor nutrition, loneliness, treatable physical problems, etc. Sometimes the answer may be as simple as antidepressants or better nutrition. At the very least, it is worthwhile to explore the options. If an elderly person is truly dying, he or she will die but the family will have the comfort of knowing that they did what they could do.

For example, in a similar situation, another friend was caring for her frail, elderly mother with chronic lung and heart problems. Ann’s mom agreed to try a feeding tube but after a short initial improvement, her mom started going downhill again. Fluid began to build up and the feedings were stopped. Ann’s mom was given what little food and fluid she wanted and she eventually died of natural causes.

Particularly in the frail elderly, it can be difficult to determine whether or not a person is truly dying. And while we are never required to accept treatment that is medically futile or excessively burdensome to us, sometimes this can be hard to determine. Far too many times, feeding tubes and other interventions are automatically assumed to be futile and/or burdensome or reasonable options are presented as just a yes or no choice. But there is another alternative that is often ignored: trying an intervention with the option of stopping it if it truly is futile or burdensome.

There are no guarantees in life or death but even finding out that something doesn’t work can be a step forward.

Shouldn’t We Be Allowed to Die?

Years ago, I received a phone call from a distraught fellow nurse living in California. Her sister, Rose, was comatose from complications of diabetes and had been in an intensive care unit for three days. Now the doctors were telling the family that Rose’s organs were failing and that she had no chance to survive. The doctors recommended that the ventilator and other treatments be stopped so that she could be “allowed to die”. My nurse friend was uncomfortable with this even though the rest of the family was ready to go along with the doctors.

As I told her, back when I was a new nurse in the late 1960s, we would sometimes see patients in the intensive care unit who seemed hopeless and we would speak to families about Do Not Resuscitate (DNR) orders. However, the one thing we didn’t do was to quickly recommend withdrawal of treatment. We gave people the gift of time and only recommended withdrawing treatment that clearly was not helping the person. Some patients did indeed eventually die but we were surprised and humbled when an unexpected number of these “hopeless” patients went on to recover, sometimes completely.

About six weeks after the initial phone call, my friend called back to tell me that the family decided not to withdraw treatment as the doctors recommended and that her sister not only defied the doctors’ prediction of certain death but was now back at work. I asked her what the doctors had to say about all this and she said the doctors termed Rose’s case “a miracle”.

“In other words” she noted wryly, “these docs unfortunately didn’t learn a thing.”

Cases like this are usually not miracles. Virtually every doctor and nurse has seen at least one surprising recovery and almost every day brings a new media report about yet another unexpected recovery. However when such considerations as cost, a poor prognosis or low quality of life intersect with the “right to die”, people can literally be forced to die prematurely. When doctors and ethicists decide to play God — even with good intentions — that arrogance can be fatal.

Isn’t It Compassionate to Support a Person’s Right to Die?

When I first met Frank, I was puzzled. Frank was a terminally ill man who I was supposed to see for pain control but he didn’t seem to be in any physical pain at all. I talked to Frank’s wife Joan who tearfully confided to me that Frank was cleaning his gun collection when he asked her if she would still be able to live in their home if, in his words, “anything happened”.

Joan knew he was talking about shooting himself and even though she was horrified, she said she knew the right thing to say: “I will support any decision you make”. However, she later panicked and called the doctor to ask about pain control and that’s when I came in.

When I suggested to Joan that Frank’s real question might not be about their home but rather about whether his slow death might be too hard on both of them, she was stunned and said that this never occurred to her. She loved Frank and she wanted to care for him until the end.

Frank and Joan then finally had an open and long overdue discussion about their sorrow and fears. When I last saw them, they were holding hands and smiling. Frank died peacefully — and naturally — a few weeks later with his wife at his side.

As a situation like this shows, political correctness can actually be lethal itself. Unfortunately, the public is given the message that “tolerance” is a paramount value. From abortion to euthanasia, we are constantly told that opposition to these practices is callous and inhumane. We are told that we cannot impose our own narrow morality on people who do not agree.

Sadly, in the case of assisted suicide/euthanasia, it’s this tolerance that really can make the life or death difference. I’ve worked with some suicidal people over the years and I have found that ambivalence over whether or not to kill oneself is virtually routine. For example, one terminally ill woman I cared for said that she would take an overdose when she left the hospital. She didn’t seem sad or depressed and was actually quite animated and smiling. As she put it, she was just tired of being tired and feared that the future “was just all downhill”.

However, when we talked about her feelings, the ramifications of her decision and what help was available, she slowly changed her mind. But when she excitedly told her friends about her new decision to live, these friends tracked me down to give me a real tongue-lashing about not supporting this woman’s original choice.

The ultimate irony of the push to spread legalized assisted suicide beyond Oregon’s terrible law is that at the same time we naturally see suicide as a tragedy to be prevented, we are pressed to accept that suicide is a compassionate choice for the terminally ill and even others.

A Time to Live, a Time to Die

When I worked as a hospice nurse years ago, our guiding principle was that we neither prolonged nor hastened dying. I totally supported this and I felt great satisfaction helping my patients and their relatives live as fully as possible until natural death. We nurses not only made sure that people were as physically comfortable as possible, we also helped with spiritual, emotional and practical concerns.

Unfortunately, the “right-to-die” enthusiasts have had way too much success in trying to convince both medical personnel and the public that choice in dying is really the ultimate principle. However, trying to micromanage death by such measures as withdrawal of basic treatment, terminal sedation, lethal overdoses, etc. profoundly changes the medical system, even for people who may recover or who may live with disabilities.

The “right to die” movement is really about despair rather than hope or true justice. People deserve the best in health care and that includes the right to both excellent care and a natural lifespan.

It’s just common sense.

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

nancyvalko culture, economics, end-of-life, family, medical ethics

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.

Nurses, “Living Wills” and Healthcare Economic$

nancyvalko economics, end-of-life, medical ethics

A few weeks ago, a 95 year old friend with chronic congestive heart failure was recovering from a hip fracture and blood clot when she developed a very serious pneumonia. I was with her in the ER when the doctor asked her son and I about how aggressive to be if her heart or breathing worsened. I said “Ask her!” and the doc was stunned when she vehemently said “Yes!”, even after he explained the potential problems with cardiopulmonary resuscitation and ventilators. My friend has a durable power of attorney naming her daughter as her health decision maker but the doctor wrongly assumed my friend was unconscious and that we were her decision makers.

My friend astonished the doctors by recovering with antibiotics and temporary BiPap (a face mask machine to support her breathing). After a stint in rehab, my friend was able to go home last week.

It was because of mistaken but potentially fatal situations like this that I wrote my 2015 blog “Living with ‘Living Wills” about the history, uses, problems and pitfalls with living wills and other end-of-life documents known as advance directives.

NURSES PUSHING “LIVING WILLS”

Just last week, however,  I read two articles by nurses uncritically promoting “living wills”, one in a major nursing journal and one in the LA Times.

The nursing journal article titled “Nurses in the Know: The History and Future of Advance Directives” by Blanca Miller, PhD, RN extolls the benefits of signing an advance directive like a “living will”, durable power of attorney, etc. Ms. Miller insists that nurses have an important role to play in promoting and implementing these documents.

She starts with a history of “living wills” beginning with Louis Kutner’s 1969 law journal article but ignores its’ title “Due Process of Euthanasia: The Living Will, A Proposal” (emphasis added) and the decades long fight to legalize euthanasia in the US by the Euthanasia Society of America  (later renamed the Society for the Right to Die and now known as Compassion and Choices)

When lawyer Kutner proposed his novel document for a person to sign that “if the individual’s bodily state becomes completely vegetative and it is certain that he cannot regain his mental and physical capacities, medical treatment shall cease,” it was a breakthrough moment, according to Nurse Miller.

The next year, The Euthanasia Society of America distributed 60,000 living wills. In 1976, California passed the nation’s first “living will” law called the “Natural Death Act” and other states quickly followed.

Nurse Miller then writes approvingly of controversial withdrawal of feeding cases such as Nancy Cruzan’s  and Terri Schiavo’s as progress, along with the 1990  Patient Self-Determination Act .

Nurse Miller apparently sees no downside to such documents despite medical articles like “When Advance Directives Can be Dangerous” and cases like Helga Wanglie’s where doctors went to court to force her family to withdraw life support but a judge upheld Ms. Wanglie’s husband’s right to make medical decisions for her.

Instead Nurse Miller warns that:

“Projections indicate that by 2030, over half of the 8.5 million Americans over 85 years of age will suffer from dementia and have no spouse or children to care for them. Healthcare professionals will be increasingly confronted with concerns regarding individual autonomy and end of life decisions.”

And bemoans that:

“Although federal law requires healthcare providers and institutions to give patients advance directive forms, most patients do not complete them. Completion rates currently range from 18% to 31%.”

Most disturbingly, Nurse Miller approvingly writes that:

“Advance directive laws are still evolving. As seen in (Brittany) Maynard’s case,  Oregon’s Death with Dignity Act (1997) allows patients not only to reject possible life-saving treatments but also to actively accelerate death.”(Emphasis added)

Also pushing “living wills” in a LA Times article “You Should Make Decisions about End-of-life Care Now”, ICU nurse Kristen McConnell states that “the American healthcare system never taught the public that preventing a natural death often results in a wholly unnatural life” and describes “an elderly patient with a history of strokes and dementia who was brought to the emergency department after another large stroke.” She describes caring for him:

“When I am face to face with a patient like this — someone who will never again be able to communicate, and who has been placed on the treadmill of continuous medical care — I feel the same type of shame as when I walk by a cold, crippled homeless person on the sidewalk. The wrongness is just as obvious.”

When I worked as an ICU nurse, I saw similar attitudes among some of my colleagues who said such patients “need to die” even when these patients wanted medical treatment. These nurses criticized these patients’ care as a waste of time and money. Personally, I found it difficult to work with these nurses and, as a potential future patient, I would not want them caring for me.

Unfortunately, such attitudes can become infectious.

HEALTHCARE ECONOMIC$

In 2012, I wrote an article “Right to Health Care, Duty to Die?” about the disturbing changes I was seeing in healthcare.

Here is an excerpt:

Recently, I had a startling glimpse into the possible future nightmare facing both healthcare and nursing when I read “How Can We Afford to Die?” in the May-June 2012 issue of Nursing Economic$. (No, the “$” is not a typo but evidently a mindset.)

This influential nursing journal, written by nurse educators and others in health care policy positions, devoted the whole issue to death, dying, and cost containment. The agenda quickly became clear as the costs at the end of life were endlessly cited, but concerns about potential abuses were dismissed and conscience rights were not even mentioned in the six articles I read…

In the editorial for this issue of Nursing Economic$ ,  Donna M. Nickitas, PhD, RN   unapologetically even advocates for “punitive reimbursement policies for excessive end-of-life treatments that only prolong life.”

If enacted, such penalties will certainly intimidate many doctors regarding how aggressively to treat you if you are terminally ill, elderly, critically or chronically ill, or even potentially disabled.

This issue of Nursing Economic$ was given in conjunction with the Hospice-Palliative Care Action Plan presented at the Fifth Nursing Economic$ Summit “How Can We Afford to Die?” on June 6, 2012 in Washington, DC, in which an 8-point action plan was also presented. One of the points discussed the importance of getting everyone over the age of 18 to sign “living wills” and other advance directives. But this point had one interesting caveat: “if many patients have advance directives that make positive, cost-conscious systemic change impossible, most of the other efforts discussed as part of our  action plan will go for naught”. (emphasis added).

In other words, not choosing a potentially premature death can upset the economic imperative to reduce health care costs.

In the years since “How Can We Afford to Die?”, I constantly saw new cost-containment measures and government mandates introduced at my institution . I am not surprised that there are now high levels of burnout and depression reported among doctors and nurses, including “moral distress”.

CONCLUSION

Before my mother developed Alzheimer’s and cancer, she would tell me that she never wanted to be a “burden” on her children. She never was and I would never tell my children the same thing.

We need to expunge the idea of people as “burdens” and embrace the words of the late  Dame Cicely Saunders, nurse, physician and writer, and founder of the true hospice movement:

“You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die.”

 

 

 

 

When Children Die, Where is God?

nancyvalko end-of-life, faith, family, grief

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?

nancyvalko assisted suicide, Compassion & Choices, end-of-life, medical ethics, mental health, 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?

nancyvalko assisted suicide, Compassion & Choices, end-of-life, medical ethics

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.

“Physician-Assisted Dying: Is a Patient’s Despair Reversible?” by Arthur Caplan, PhD. And Maurie Markman, MD

nancyvalko assisted suicide, end-of-life, futility, law, medical ethics, mental health, suicide

A while back, I received a phone call asking me to talk to a man in another state who was desperately seeking physician-assisted suicide. He was in the later stages of a degenerative disease and wanted to die before his condition “got too bad”.

I talked to this man I will call “John” for quite a while about his life, his frustrations, his strengths, some resources, etc. He said he had told his caregivers at the nursing home that he would like to talk to someone about his concerns months ago but nothing happened. With his permission, I spoke to his caregivers and I asked John to keep in touch.

About a month later, John contacted me and said that he had changed his mind about assisted suicide and was enjoying being with friends and going out on trips with other residents.

He said the biggest help was talking with someone like me who listened and who cared.  Best of all, he said “I do deserve a better life!”

I thought about John when I read an April 06, 2017 commentary from Medscape, a password protected news site for medical professionals, titled “Physician-Assisted Dying: Is a Patient’s Despair Reversible?” 

The commentary was a discussion between Arthur Caplan, PhD, a prominent ethicist  who was against legalizing assisted suicide until the Brittany Maynard case, and Maurie Markman, MD, an oncologist and professor who also supports assisted suicide, that I found disturbing.

For example, Dr. Markman says that:

 “My concern is that the reason someone may ask for death, which is their right, is because of despair. Despair may be potentially temporary or it may be permanent, but death itself is permanent. My concern would be that some part of an individual patient’s despair may be reversible; I would want to be certain that it is not reversible before deciding that this (physician-assisted suicide) makes sense for that person, from my perspective.”
(Emphasis added)

But amazingly, neither Dr. Markman or Dr. Caplan even mentions or recommends  mental health evaluations for people considering assisted suicide-something which no assisted suicide law now requires because such suicides are considered “rational”.

Instead, there is this exchange:

Dr Caplan: I remember when Jack Kevorkian was bringing people to Michigan and helping them die in the back of Volkswagen vans and so on. One problem I had was that he did not know these people.

Dr Markman: That’s right.

Dr Caplan: They would show up, and 24 hours later, they would be gone to the hereafter; some of them were terminally ill, and some were not, as a matter of fact. Given the constraints that physicians face in terms of time and other activities they have to engage in—paperwork and so on—can they get to know patients well enough to have reliable discussions about the authenticity of their wishes to die?

Dr Markman: That is a concern. Physicians don’t have enough time to do a lot of things. The kind of conversation we are talking about would involve a lot of time and effort. I would suggest that physicians would want to be able to spend that time with their patients, but it does not mean they have that time. Quite frankly, it may be relatively immediate time. A patient comes in at a particular point and says, I’m thinking of doing this and I’m thinking of doing it now, and the doctor has a full schedule. The physician would want to take that time, would want to bring in the family, but it is difficult with time constraints. (Emphasis added)

There is another discussion of financial burdens impacting assisted suicide, with Dr. Caplan saying:

“Dr. Caplan: Here is a source of growing despair: These treatments (for cancer) are causing me to go broke. I cannot afford a $100,000 biologic or immunotherapy, or I simply do not want to linger on and on while my grandson’s tuition is spent, or whatever. We have come to think about this as the problem of financial toxicity: more tools, but more associated cost. How does physician-assisted dying fit into this emerging area of financial burden?

Dr. Markman: … The potential for bankruptcy is becoming a major issue among patients with cancer. We know that during the Great Depression, people went bankrupt and committed suicide. Why could it not happen now, when we are talking about therapies that cost hundreds of thousands of dollars a year and patients have copays of 20%? Financial toxicity is real.” (Emphasis added)

CONCLUSION

Where is the compassion for these suicidal people grappling with issues that lead them to consider physician-assisted suicide?

This dispassionate discussion of some qualms that these supposed experts seem to have about physician-assisted suicide still leaves assisted suicide laws intact and does nothing to promote non-discriminatory suicide prevention and treatment or even conscience rights for those of us who oppose physician-assisted suicide.

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

nancyvalko advance directives, assisted suicide, Compassion & Choices, end-of-life, Kevorkian, law, medical ethics, terninal/palliative sedation

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.