The inconsistent philosophy of an assisted suicide campaigner.

Alex Schadenberg comments on the unfortunate circumstances faced by pro-euthanasia academic, Margaret Battin as she struggles with the reality of supporting her husband who became a quadriplegic after a cycling accident. We hold every sympathy for Ms Battin and her husband.  For many years, Margaret Battin has been a well known leader of the assisted suicide lobby in America. Over the past few years she has become known for the care of her husband, Brooke Hopkins, who experienced a bicycle accident, in which he broke his neck and has been living with quadriplegia since November 14, 2008.
Hopkins had recently retired as an English professor at the University of Utah, when the accident occurred. His accident has challenged some of Battin's long-held beliefs related to euthanasia and assisted suicide.
The following article is a synopsis of an article that was written by Robin Marantz Henig and published in the New York Times on July 17, 2013, under the title: A Life or Death Situation. The New York Times article appears balanced in its approach.
Euthanasia is an action or omission of an action that directly and intentionally causes the death of a person, for reasons of mercy. The death is directly and intentionally caused.
Assisted suicide is the direct and intentional involvement in a suicide by providing the means of death, or by counseling or encouraging a person to commit suicide.
Withdrawing medical treatment, if the person dies, is a natural death and is not a form of euthanasia or assisted suicide. The definition of medical treatment has been expanded to include hydration and nutrition. Hydration and nutrition should not be defined as medical treatment but rather medical care.
There were times that Hopkins could have died by asking that medical treatment be withdrawn. Americans have the right to have medical treatment withheld or withdrawn.
Hopkins has continued to live by not withdrawing medical treatment, but like every human being, he has gone through periods of emotional strength and also periods of depression connected to feelings of hopelessness.
The article states that a year before the accident Hopkins had updated his "living will" to state that should he suffer a grievous illness or injury leading to a terminal condition or vegetative state, he wanted no procedures done that:

"would only serve to prolong the moment of my death and to unnaturally postpone or prolong the dying process."

The article provides insight by stating:

"If Peggy (Margaret) had been there and known the extent of Brooke's injury, she might have urged the rescuers not to revive him. … But Peggy wasn't there, and Brooke … was kept breathing with a hand-pumped air bag during the ambulance ride to University Hospital, three miles away. As soon as he got there, he was attached to a ventilator."

The article then states:

"By the time Peggy arrived and saw her husband ensnared in the life-sustaining machinery he hoped to avoid, decisions about intervention already had been made."

This is a very important point considering the fact that Hopkins has lived nearly 5 years since his accident and he continues to live today.
The theme of the article is: Suffering, suicide, euthanasia, a dignified death - these were subjects she had thought and written about for years, and now, suddenly, they turned unbearably personal. … she would watch lofty ideas be trumped by reality - and would discover just how messy, raw and muddled the end of life can be.
The article points out that, after the accident, Battin wondered: "What if my whole life has been wrong?" Her whole life had involved writing "wheelbarrows full" of books and articles championing self-determination in dying.
Battin has been a long-time defender of euthanasia and all of the groups that promote euthanasia. The article states:

"Nor did she run from fringe groups like NuTech, … or Soars (Society for Old Age Rational Suicide). … She also found common purpose with … Compassion and Choices, that push for legislation or ballot initiatives" 

"At the heart of her argument was her belief in autonomy."

Even though Battin has been a euthanasia activist the article states that she was now faced with a dilemma:

"It (euthanasia) is not about terminally ill people in general in a kind of abstract way now, its also about my husband, Brooke. I still love him, that's a simple fact. What if he wanted to die? Can I imagine standing by while his ventilator was switched off?"

This is a key issue in the New York Times article. Battin appears to be constantly examining Hopkins medical treatment issues within the framework of whether or not this or that decision represents what a euthanasia lobby leader should do. She appears conflicted. This conflict creates a lasting difficulty for her and for Hopkins.
One of the issues is the cost of caring for a person with complications related to quadriplegia. The article explains that Battin and Hopkins created a 24-hour care-team. Hopkins medical needs and the care-team are partly paid for by the University of Utah's health insurance, partly paid by Medicare and yet they pay about $250,000 per year, mainly for the cost of the 12 care-givers.
Depression and treatment issues
The New York Times article candidly covers the issue of depression.
Hopkins admits that he has experienced significant bouts with depression. He stated that he recognized the feeling, having struggled with bipolar disorder since adolescence.
Hopkins explained how he has good days and bad days. The article describes how he enjoys his friends playing music or reading with him, reading and writing, walking in the park, being with his step-children.
But on his bad days: "these pleasures fade, and everything about his current life seems bleak."
The article then quotes Battin:

"Depression is not uncommon in winter. It's important to think positive thoughts."

Brooke Hopkins
Hopkins responds:

"Basically I dislike being dependent, that's all," 

"One thing I don't like is people speaking for me, though."

Battin responded:

"And that includes me?"

Hopkins states:

"Yes, I don't like that."

It is important that Hopkins has been teaching part time for the University of Utah's adult-education program. Many people with disabilities are unable to find employment and become dependent on others.
The article reported an interesting interaction with Battin while Hopkins was teaching his class. Battin was concerned about how he looked and how he was reacting to his students.
Battin stated:

"He's never looked this bad." She asked him: "Are you O.K.?"

Hopkins responded:

"I'm fine, don't worry"

Battin continued being concerned about the mucus in his lungs and inquired about his CoughAssist therapy. Hopkins said he didn't want it while the class was there. Battin urged him to try albuterol instead, Hopkins said no, Battin insisted, so finally Hopkins gave in. Class resumed.
You will notice how Battin's constant fear about her husbands health leads her to skew her theory on how people are pressured by family and friends.
His "Final Letter"
On July 28, 2012 Hopkins decided that he couldn't go on living. Battin proofread and typed the "Final Letter." Battin decided that his decision was: carefully considered, serious and sincere, autonomous, that her husband was fully alert, the very situation that she had spent her career defending.

"She reasoned that Brooke had the right, as a mentally competent patient, to reject medical interventions that could further prolong his life."

It must be noted that withholding or withdrawing medical treatment is not the same as euthanasia or assisted suicide.
From that point, the articles states that, Battin shifted from being Brooke's devoted lifeline to being the midwife to his death.
And yet in August 2012, when Hopkins became uncomfortable and delirious from breathing problems, caused from pneumonia, Battin brought him to the emergency room.
On August 18, 2012 Hopkins stated that he wanted to 'soldier on' despite difficulties.
Hydration and Nutrition
The 'living will' that Hopkins had signed the year before his accident also stated that he wished to avoid: "administration of sustenance and hydration."
In August 2012, Hopkins had a bout of pneumonia that hospitalized him for several weeks. In order to avoid infections Hopkins agreed to have a feeding tube inserted.
Feeding tubes are an effective way to provide fluids and food. Fluids and food by feeding tube should not be defined as a medical treatment because they do not treat a condition but rather provide for the basic necessaries of life.
The article stated:

"In his prior life, Hopkins couldn't have imagined tolerating a feeding tube; he loved eating too much." 

"Thus a man who had always taken great joy in preparing, sharing and savoring food decided to give up his final sensory pleasure in order to go on living. He swears he doesn't miss it."

Hopkins stated: "You can get used to anything."
A Desire to die.
It appears clear from the article that Hopkins desire to die fluctuates.
Hopkins states that if he was given the choice of going to the hospital or dying, that he would choose dying. But at the same time he states that when he was brought to the hospital that Battin made the "right call."
Hopkins clarifies his statement by saying: 
'What I mean is I'm done doing this stuff in the hospital. But I'm not ready to die yet.'
Battin is trying to learn how a transient despair differs from a deep and abiding decision to die. 
The article states:

"What has changed," she told me, "is my sense of how extremely complex, how extremely textured, any particular case is." This realization is infinitely more fraught when you're inextricably invested in the outcome and when the signals your loved one sends are not only hard to read but also are constantly in flux.

"Proponents (euthanasia movement) generally focus on only one branch of the decision tree: the moment of choosing death. There's much talk of living wills, D.N.R. orders, suicide, withdrawal of life support, exit strategies. Brooke's experience has forced Peggy to step back from that moment to an earlier one: the moment of confronting one's own horrific circumstances and choosing, at least for now, to keep on living.

Battin then admits that her own desires also shift from day to day. The article states:

She is deeply afraid of misunderstanding Brooke's wishes in a way that can't be undone. The worst outcome, to her, would be to think that this time he really does want to die and then to feel as if she might have been wrong.

This statement by Battin provides insight into the mindset of a committed euthanasia proponent. She fears making a wrong decision that allows Hopkins to live. The greater fear should be that she makes a wrong decision that causes Hopkins to die.
Psychiatrist, Harvey Chochinov, has done significant research into the issue of the "Will to Live" and has designed a program titled: Dignity Therapy. Chochinov proves that it is normal for the will to live to fluctuate.
While Hopkins is living a plethora of choices remain available. When he is dead, no further choices remain.
Rejecting those who oppose assisted suicide.
The article examines the question of euthanasia and assisted suicide. The article states: 

opponents who say that helping the terminally ill to die will lead eventually to pressure being put on vulnerable people - the elderly, the poor, the chronically disabled, the mentally ill - to agree to die to ease the burden on the rest of us.

Battin rejects those who oppose euthanasia. The article states:

The scholarly work she is most proud of is a study she conducted in 2007, which is one of the first to look empirically at whether people are being coerced into choosing to end their lives. Peggy was reassured when she and her colleagues found that in Oregon and the Netherlands, two places that allow assisted dying, the people who used it tended to be better off and more educated than the people in groups considered vulnerable.

The study Battin conducted in 2007 relied on the "official data" from the Netherlands and Oregon which is not sufficient to prove her hypothesis. The data from the Netherlands and Oregon is incomplete at best because it is based on reports that are submitted by the doctors who caused the death. Inconsistencies with the law are not reported because people do not self-report that they broke the law.
Further to that, just because people who die by euthanasia or assisted suicide tend to be wealthier or better educated doesn't preclude them from experiencing abuse. People who experience elder abuse are more likely to be wealthier than average.
The article then states:

What Peggy has become more aware of now is the possibility of the opposite, more subtle, kind of coercion - not the influence of a greedy relative or a cost-conscious state that wants you to die, but pressure from a much-loved spouse or partner who wants you to live. The very presence of these loved ones undercuts the notion of true autonomy. We are social beings, and only the unluckiest of us live in a vacuum; for most, there are always at least a few people who count on us, adore us and have a stake in what we decide. Everyone's autonomy abuts someone else's.

Battin should realize that her comments go both ways. I am not convinced that the "greedy relative" is a common phenomenon, but I know from the many phone calls that I have received that subtle pressure is being placed on people while they are in a vulnerable condition.
Battin states that: 

"The very presence of these loved ones undercuts the notion of true autonomy" and that "Everyone's autonomy abuts someone else's.

These are true statements, but these statements support the need to prohibit euthanasia and assisted suicide. True autonomy, as presented by the euthanasia lobby is an illusion. Everyone is effected by others.
Battin is then quoted as stating that she is:

"committed to two moral constructs in end-of-life decision making: autonomy and mercy. 

"Only where both are operating - that is, where the patient wants to die and dying is the only acceptable way for the patient to avoid pain and suffering - is there a basis for physician-assisted dying, … Neither principle is sufficient in and of itself and, in tandem, the two principles operate as safeguards against abuse."

It is interesting that Battin has moved from a position of autonomy alone to one of autonomy and mercy.
Battin should recognize that "mercy" is a two-edged sword. Mercy can be oriented to the relief of suffering or it can be oriented to the elimination of the sufferer. Mercy can be based on a genuine concern for the "other" while it can also be based on a concern for the "self." We cannot rely on an ethic of mercy, that is easily distorted, in order to determine who lives or who dies.
One day Hopkins announced that he wanted all of his machines disconnected. After a short skirmish, all of his machines were disconnected.
Hopkins put his head back, closed his eyes and waited to die. After several minutes passed he opened his eyes and said: 
"I didn't die?"
He then had everything re-attached. He felt refreshed, as if he had made it through some sort of trial and three hours later his students arrived and he began teaching.
By withdrawing all medical treatment, Hopkins thought that he would die, but without knowing it, he wasn't ventilator dependent. He breathed on his own. He lived.
If euthanasia or assisted suicide were legal in Utah, he might have been given a lethal injection. Whether he was ventilator dependent or not, he would have been dead.
Clearly there is a difference between killing and letting die. To withhold or withdraw medical treatment is not the same as euthanasia or assisted suicide.
The story ends by informing us that Hopkins has written another "farewell letter" stating that he intends to die in the Spring of 2014. I hope that instead, he decides to 'soldier on' despite his difficulties.
P.S. Margaret Battin's 2007 study and then the subsequent Royal Society of Canada study and the Falconer Commission report led me to write the book: Exposing Vulnerable People to Euthanasia and Assisted Suicide. The euthanasia lobby relies on limited data to establish the false conclusion that legalizing euthanasia is safe.
Link to a previous articles: