Reflections on the Death of an 11 Year Old Aboriginal Girl Who Was Allowed to Forgo Chemo

By Dr David Laing Dawson

I can think of a few metaphors that aptly express why one shouldn’t blog about this subject: mine field, thin ice, bramble bush, angels fear to tread. But…

We decided many years ago that we, (and by “we” I mean our organized educated societies, our western countries ruled by civil law), should protect our children, even protect them from their own parents if necessary. Well, truthfully, it wasn’t that many years ago, just over a hundred, and it seems we decided we needed to protect our pets and our farm animals a full generation before deciding we also needed to protect our children. But we did decide we really shouldn’t allow child labour, or pretend that sex is consensual before age 14 then 16, or marry off unwilling teenage females, or cage and beat or starve our toddlers. We know we should not allow a 13 year old to fly an airplane because she wants to, or drive a car before age 16, and even then only with training and supervision.

We expect parents to take their children for adequate medical care, and if they are not doing this we intervene. If we find that a hyper religious Christian couple have caged their 10 year old in a rat-infested basement for two weeks as correction for lying, or taking the Lord’s name in vain, we intervene. We take the child away. It is not a process without complexity but we do act. We do not allow parents to refuse treatment for TB if their child suffers from this disease.

So why on earth do we allow a ten year old, or a 12 year old, to decide with her parents, to forgo life-saving cancer treatment? Why this incredibly deferential attitude toward primitive thought and quackery when it is coming from a person or persons of First Nation Heritage? We wouldn’t buy it from a Roma, a Seventh Day Adventist, a practitioner of Santeria, an Irish healer, a Celtic priest, a new-age diva. So what makes us so cautious, so generous with the fictions of the ancient healing practices of First Nations?

Now, don’t get me wrong. I’m not against ritual and faith and any kind of spiritual or psychic healing practices if they give comfort and hope and do not replace actual proven treatment when such treatment exists. Go ahead and burn the incense, do the cupping, chew the wheat grass, wear the garlic, swallow the echinacea, and acupressure to your heart’s content, but if a bacterial pneumonia is the problem, for God’s sake take the antibiotics as well.

I will try to answer my own question because if that were my child, or grandchild, Family and Child Services and the court would have, I’m sure, taken my child into temporary custody and ensured that she be treated.

I think it is the problem of lingering racism and guilt, the guilt being a response to our own history and perhaps lingering hints of racism. My and your ancestors certainly did not treat the First Nations people well. Even when our intentions were basically good, the solutions proved destructive: residential schools, Reserves. So we feel guilty, and angry. Guilty that we still have people living in our rich country in third world conditions. Suicide is endemic, alcoholism epidemic. Many of the young men are in prison, many of the young women disappear or die prematurely. The fire truck does not work; the water treatment system fails. Nepotism flourishes.

I had dinner with the chief of a Northern Ontario band many years ago. He was in a wheel chair having lost his legs on a rail road track in what is often called “an alcohol related accident”.  He was clever and wise and had something of a sardonic sense of humor.  For some reason I was curious about the apparent lack of curse words in his language, and asked about this. He smiled at me and said, “You must remember that the Indian had nothing to be angry about before the white man came.”

Well, I know that is not really true, and I know that they are no more likely to be in touch with, in harmony with, the mysteries of the universe, energies of the wind and rain, the forest animals, the living earth itself than I am (or at least David Suzuki). Though I am sure their ancestors were more in touch with night and day and rain and wind and birth and death, with drought and storm, as were mine living  in their sod huts, cooking over peat fires and herding their sheep through the rocky pastures of the Orkney Islands, unaware, I’m sure, of Galileo’s discoveries, or of Dr. John Snow  staunching the spread of Cholera in London.

No. They don’t have any special lock on the magic of the universe, the spirits of the animal kingdom, the nature of healing, the mysteries of the our cells and organs, of our mortality. They are merely human, like you and I. And Canadian. Living in the twenty first century, in centrally heated houses, with TV and the internet, driving cars, burning fossil fuels. And their children deserve the same protection as mine do from the superstitious beliefs of our ancestors.

More on Charlie Hebdo and the Role of Satire

By Dr David Laing Dawson

The Charlie Hebdo tragedy, following an outpouring of grief, outrage and an affirmation of the importance of Freedom of Speech, has provoked a discussion about the limits (if any) that societies should impose on this freedom. The Pope has waded in and aligned himself with some radical Islamist groups asking that faith and deities be exempt from criticism and satire.

Well, I do understand that it is in his interest that Bill Maher stop making fun of his silly hat and robes, but for the rest of us our response should be dictated by both history and present reality within the diverse cultures and societies of this world.

If indeed Jesus, Mohammed, Allah, and the Pope himself are infallible, above criticism, perfect in the conduct of their lives, their judgements and their proclamations, (and above criticism and satire) then surely the wise thing to do would be to turn over the reins of government to them and their acolytes, apostles, and lieutenants. But wait a minute, we did try that once, and it was not a pretty sight: Caliphates, inquisitions, religious wars, persecutions, torture, beheadings…. Absolute faith may be comforting but it leads directly to defending that faith by all means. History tells us we must be free to criticize and satirize our leaders, our deities, and our sacred cows or risk a return to the horrors of the 13^th century. (Or the horrors we see in some parts of the world in the 21st century)

And a current survey of all the countries of the world, their forms of governance, press and speech freedoms, will surely show that freedom of speech, including the right to satirize and criticize faith, religion, leaders and deities, is closely associated with tolerance and inclusiveness. People of all faiths (including those who do not ascribe to any) are today living peacefully, cooperatively, and productively only in those countries that permit such freedom.

Should there be any limitations? Certainly not those dictated by taste, political correctness, personal sensitivities, rituals, challenges to authority, and hurt feelings. But we have all been made sensitive to the power of hate propaganda when espoused by people of influence and authority. Not the mentally ill person on the street corner railing at Jewish bankers, but the Third Reich leaders, the popular radio host in Rwanda, and some Islamist Imams themselves. Their propagation of hate can be dangerous.

But in the laws of our liberal democracies the concept of Intent is important, along with due process, independent judiciary, and trial by peers, as well as the belief that no one is above the law. Our current hate laws are sufficient to deal with anyone of influence who propagates hate with the intent of inciting violence. And paradoxically, I think these very laws are protected indirectly by our freedom of speech and expression.

Should We Bring Back Mental Asylums?

by Marvin Ross

Dr Dawson provided an excellent history of how much we have regressed in our treatment of those with mental illness in his five part series. Despite better (but not perfect) medications, and greater knowledge of the brain, we have, as he said, “For a significant number of mentally ill people (and their families) we have, over the past 30 years, reversed the reforms provoked by Dorothea Dix in 1843.”

Certainly, the statistics for Canada, the US and the UK, bear this out. The Canadian Journal of Psychiatry pointed out that there was a rapid closure of beds in the 1970s and 1980s but that was offset by an increase in days of care in the psychiatric units of general hospitals. They called this transinstitutionalization. But, by the 1990s the overall days of inpatient care began to decrease. Between 1985 to 1999 there was a decline of 41.6% in average days of care per 1000 pop in psychiatric hospitals and a decline of 33.7% in psych units in general hospitals. Days in hospital declined but there were more frequent stays for patients – the revolving door.

In a document by the Public Health Agency of Canada called the Human Face of Mental Illness, it was stated that “This discontinuity and inadequacy of care after hospitalization is common among seniors who have lived with schizophrenia for most of their lives. After being transferred from psychiatric institutions they may find themselves in long- term care facilities that generally have limited availability of mental health professionals.”

Meanwhile, there was a near-doubling in the total proportion of prison inmates in Canada with mental illnesses between 1997 and 2009. Prisoners often end up in segregation units and without adequate treatment because the prisons don’t have the staff or resources to properly care for them.

In the US according to the Treatment Advocacy Center, in 1955 there were 340 public psychiatric beds available per 100,000 U.S. citizens. By 2005, the number plummeted to a staggering 17 beds per 100,000 persons. And we know that the largest psychiatric facilities in the US are the jails in New York City, Chicago and LA.

The Guardian newspaper in the UK recently reported that more than 2,100 mental health beds have closed since April 2011, amounting to a 12% decline in the total number available. It also found that seven people had killed themselves since 2012 after being told there were no hospital beds for them.

On one occasion last year, there were no beds available for adults in England.

In 2011, Dr Peter Tyrer, a professor of community psychiatry at the Centre for Mental Health at Imperial College, London, wrote in the British Medical Journal that “I am now rueing the success of the community psychiatric movement in the UK, where the inane chant of “community good, hospital bad” has taken over every part of national policy. At some point in the steady reduction of psychiatric beds, from a maximum of 155 000 in 1954 to 27 000 in 2008 the downward slope has to level off or rise.”

Meanwhile, earlier this year, three medical ethicists at the University of Pennsylvania, Dominic Sisti, Andrea Segal and Ezekiel Emanuel, argued for a return of the mental asylum in the Journal of the American Medical Association. They said that their use of the word asylum wasn’t meant to be “intentionally provocative.”

“We’re hoping to reappropriate the term to get back to its original meaning, which is a place of safety, sanctuary, and healing, or at least dignified healing for people who are very sick.”

The United States, they said, now has 14 public psychiatric beds per 100,000 people, the same as in 1850. On average, Sisti said, countries in the European Union have 50 beds per 100,000.

On a personal level, author Katherine Flannery Dering whose book Shot in the Head discusses how she and her 8 siblings cared for a brother with schizophrenia, described the impact of what she called The Great Emptying on one of the talks that she gave. As she says, the number of people needing hospitals did not shrink as much as hospitals did.

Asylums (or psychiatric hospitals) do not have to be evil places where patients are abused or ignored. There is no reason they cannot be caring compassionate places that give patients the necessary time to heal or to protect them from the outside world if that is what they need.

One Step Forward, Two Steps Back – Mental Illness Treatment Over the Past 150+ Years – Part V of IV

By Dr David Laing Dawson

Since writing Part IV, I’ve read E. Fuller Torrey’s American Psychosis. So there is my historian tracing the manner in which the personal struggles of politicians, the belief systems of leading professionals of the time, egos, idealism, personal tragedies, and, of course, power, politics, and money brought about the disastrous transformation and destruction of the mental illness treatment system from 1963 to present time in the US.

Canada is always a slightly more cautious, reticent, little brother too often lead astray by his risk taking, grandiose big brother. We are not as enamoured with the profit motive; we have evolved a somewhat different social contract; our minimum wages and safety nets are better; our Federal Government dare not (thanks in large part to Quebec) tamper with social and health programs long the responsibility of our provinces (or initiate something unilaterally that would undermine or destroy Provincial Programs). So we still have most of our mental hospitals, and they are mostly linked and associated with our community programs. Our psychiatric leaders and teachers remained a little more grounded in the observations of Dr. Kraeplin than the fanciful extrapolations of Drs. Freud and Laing. We realize, I hope, that privatizing our garbage collection (providing we retain sensible unions) might be both fiscally and socially responsible, but privatizing the care of the mentally ill is not.

Yet in our own slow and cautious way we are following the same path as the US. Completely discredited ideas about the causes, treatments, and “prevention” of serious mental illness, once promoted by the Psychoanalysists who designed the American Community Mental Health Programs of 1960 and 1970 are finding their way into our commissions and planning groups. Our linguistic avoidance of ‘illness’ in favour of ‘issues’ and ‘health’ is just another form of denial of the knowledge that, unfortunately, God help us, no matter how well we conduct our lives, we (and our children) can still be stricken with serious diseases of the body and brain. And, our cherished belief in inclusiveness, our understandable distrust of authority, even of scientific authority, and our wishful thinking and politeness, often allow equal voice to the speakers of nonsense on our commissions and task forces.

Much of the care of the seriously mentally ill has shifted to psychiatry programs and inpatient units of our General Hospitals. These are not for-profit institutions, but neither are they asylums; short stays are the goal; turn-over is rapid, and the doors we unlocked in the 1970’s are once again locked. (Security becomes paramount when the unit is situated on the fifth floor of a General Hospital next to the surgical suite and the Pediatric ward.) Overwrought privacy laws allow health personnel to avoid the onerous task of talking with families and other caregivers. Time consuming and difficult appeal processes facilitate psychiatrists prematurely discharging very ill people who are not, strictly speaking, imminently dangerous to self or others.

We too now have mentally ill homeless, and jails and prisons with burgeoning populations suffering from mental illness.

(I remember being mildly astonished, in perhaps 1990, to find that an Ontario Ministry of Health task force, seeking to determine the optimal number of psychiatric inpatient beds per 100,000 population, was using the State of Georgia as a benchmark. Not The Netherlands, Finland, Sweden, Denmark, but Georgia. It is sometimes difficult to resist American enthusiasm.)

We have had the opportunity of adopting some of the good and effective programs pioneered in the U.S. (the ACT programs) and avoiding some of their bad ideas; we are developing a number of programs to help the police (now often front-line mental health workers by default) in many jurisdictions; we have some means of mandating forced community treatment for those who remain at risk (though it is underutilized).

Still, our development of community programs to service the seriously mentally ill has definitely not kept up with de-institutionalization. We seem to be, once again, inexorably following the misguided steps of our big brother to the south.

But, we have not destroyed our mental illness treatment system, merely hobbled it. So, in theory at least, as a country with a smaller population than California, we should be able to fix it.

One Step Forward, Two Steps Back – Mental Illness Treatment Over the Past 150+ Years – Part IV

By Dr David Laing Dawson

It is difficult, if not impossible, to fully understand the forces altering, changing, insidiously impacting our attitudes, laws, institutions, and behaviour in our own time. It takes distance and serious historians to dissect these things, and even then we are probably viewing them from a clouded contemporary prism. But something happened between 1990 and 2015 I would not have expected in 1970. Many of our mentally ill fellow citizens today are worse off than they would have been had they been born 50 years earlier. There are parts of the United States where one could make the case that they are worse off than they would have been had they been born in 1850. How could this have happened during a period of increasing knowledge, advanced medical tools, relative peace and prosperity?

This is one part of the puzzle:

The mental health laws were tightened, restricted during those years (1970 to 1990), and safeguards put in place, all toward the righteous goal of preventing anyone, ever, from being unnecessarily stripped of freedom and independence without “due process”. On paper it looks fine. Now one could not be held for a psychiatric assessment unless he or she was judged to present an imminent threat of harm to self or others. Within 72 hours if a psychiatrist came to the same conclusion about imminent threat to self or others, that person could be kept for another two weeks. Further safeguards were put in place – appeal processes, Review Board Hearings, lawyers made available, patient advocates. The wording, the processes are all a little different in each North American jurisdiction, but with similar intent and outcome.

And then the act of treating was separated from the act of detaining. A second process is required for involuntary treatment: a determination of not being competent to consent to treatment, and then the treatment authority would be conferred on a nearest relative, or, failing that, a public official. And this determination could also be appealed, taken to a Review Board, and ultimately to court.

This distinction between the right to detain and the right to treat has led to some paradoxical situations in which everybody loses. A person can be deemed too imminently dangerous to self or others to set free, to be allowed to leave, yet competent to refuse treatment. The patient suffers physically, mentally, left in a state of psychosis for a long period of time; families watch this suffering; unhappy doctors and nurses watch someone deteriorate to a state of chronic psychosis, to a state of true madness and unpredictability not seen in our mental hospitals since the introduction of effective medication.

Apart from this paradox all the new rules sounded commendable, and guaranteed to reduce or eliminate type I errors. Type I errors being the unnecessary detention of someone eccentric, a nuisance, but not dangerous, and the forced treatment of someone who should (within our current view of individual rights) be allowed to decide for himself. They prevent the abuse of a Nurse Rached, or a Dr. Donald Cameron. And these new rules were informed, to some extent I am sure, by our increasing awareness of the use of Psychiatry in the Soviet Union to deal with people deemed to be enemies of the state.

We need strong safe guards in all our systems and institutions, for humans in positions of power are always capable of abusing or misusing that power, of convincing themselves on some philosophical basis or other, that they are doing the right thing.

But when we completely eradicate the possibility of type I errors we open the door for type II errors. In this case not detaining someone who, in hindsight, should have been detained, not protecting and treating people who need treatment and protection. The most dramatic form of Type II error brings about the headline that we have read with horror and disbelief about twice per year the past twenty years. A patient is released from hospital, gets on a Greyhound bus, and decapitates a fellow passenger. A young man stops taking his pills and butchers his mother;  another shoots a journalist with a crossbow; yet another shoots an Arizona politician in the head.

But a less dramatic and more insidious type II error has been the increasing numbers of mentally ill (not deemed imminently dangerous to self or others) left to fend for themselves on the street, in shelters, and in jails and prisons. For a significant number of mentally ill people (and their families) we have, over the past 30 years, reversed the reforms provoked by Dorothea Dix in 1843.