I rarely comment on how other families deal with aging parents in nursing homes. I know, from personal experience, even good visits to these places can have grim moments.
So it’s with some misgiving that I’m criticizing Katherine Hammond, the daughter of Margot Bentley, the 83 year-old former nurse currently living in a facility run by Fraser Health in B.C. Hammond petitioned the courts to allow Bentley, who suffers from dementia, to be released into her care or into the care of a facility willing to stop feeding her.
The term ‘forced feeding’ has been used to describe how Bentley is currently fed—she is prompted with food on a spoon—and according to at least one newspaper, Hammond feels that “someone in the care home with religious or moral objections” reported her to the Fraser Health authorities. Her plan was to stop feeding her mother in order to hasten her death.
When it comes to assisted suicide (or what in Bentley’s case would be euthanasia), frequent references to religious opposition are something of a red herring: one does not need to be religious or moralistic to understand why Fraser Health refused Hammond and got the police involved. Bentley’s condition may be heartbreaking, but her advance directive only stipulated that “no heroic steps” be taken to prolong her life and that she wanted “no nourishment.”
Given the vagueness of these requests, and the fact that advance directives have been more specific for quite some time, the fault lies with Bentley and her family. After her diagnosis, why did no one in her family ensure she saw a capable legal expert? One who could have, at the very least, given her legal advice based on the differences between terminal and chronic illnesses?
The family’s unpreparedness is puzzling. Both Bentley and Hammond are nurses so it’s hard to believe they didn’t know better.
However, in response to the court’s refusal, Hammond has resorted to allowing images of her ailing mother to be posted online, a move not necessary to her fight. These are intended to evoke pathos, but also antipathy, the underlying message being, “Look at the pathetic thing my mother has become.”
The photos have been effective. Here is a brief selection of comments Bentley’s photographs have elicited.
From Andre Picard of the Globe and Mail:
Margot Bentley was a long-time nurse, working mostly with patients with dementia. She was determined not to die a slow, lonely, frightful death like so many of her patients.
Bentley may be dying slowly, but feeling lonely and afraid may not even be possible for her given her late stage dementia. But if she can feel those things, surely it’s a problem her family can remedy by visiting her more often?
… a care worker puts a spoonful of puréed food to her lips and she eventually opens her mouth and the food is pushed in; then she swallows, often with difficulty.
Did Picard actually witness this? Or is he just believing what Hammond claims, making this another case of #believeallsurvivors? More importantly, did he, or Karin Wells of the CBC, look into Hammond’s background? Were they able to rule out financial motives on her part?
From the CBC:
The unresolved question–would a son or a daughter– any legally appointed Representative under a modern Representation Agreement be permitted to refuse food or water on a patient’s behalf?
No. It’s clear from the outcome of the trial that this issue has been resolved. The law states that an adult may in an advance directive “give or refuse consent to any health care described in the advance directive.” However, caregivers cannot “do anything that is prohibited by law” or “omit to do anything that is required by law.”
Any ambiguity perceived by the CBC is as imaginary as the purported objectivity of their four part series, Last Right. According to a source within the CBC, producer Duncan McCue stacked the deck by lining up friends (and friends of friends) to be his experts. Although McCue was more activist than journalist in the series, some attempt at disclosure should have been made.
From Sarah Chapple, a blogger at Rabble.ca comes a surprisingly even-handed, distinctly un-Rabble-like observation:
A lesser-known piece of this situation is that a second, less clear advance directive was found after Margot was diagnosed with Alzheimer’s disease. This second document stated she would “accept basic care” but no “artificial means.” This has been interpreted to mean that Margot would not want to be fed with a tube feed, but leaves the situation of receiving nourishment by spoon relatively unclear.
Of the many articles written about Bentley, Chapple’s is the only one that addresses the second advance directive. Her perspective is important because she has isolated the precise point of ambiguity in Bentley’s choice of words. This is where Bentley states she would accept “basic care,” a clear concession to being spoon-fed.
What’s been most perplexing about the media support assisted suicide has received in Canada is the hysteria with which it has been ushered in. If its trending on social media is any indication, I’m not sure that thoughtful conversations about it have ever taken place, this despite the frantic assertions of the pro side. What has happened instead is a bombardment of positive messages about the procedure, a bombardment that has silenced (or shamed into silence) much of the opposition. Bringing up anecdote after anecdote about sick and dying people has made the usual give and take of debate virtually impossible.
When it comes to Hammond, I’m repelled by her decision to use her mother’s images. Were I to ask my own mother about having similar photos of herself posted, I’m not sure she’d be able to answer: she’d be too busy crying. However, apparently the CBC has no qualms about crossing into elder abuse territory. It’s a place they’re quite happy to go if it means maintaining ratings and driving more readers to their sites.
This is a #longread at 2,400 words. Included are images of the Board of Directors for the CBC. I’d like to know what they each think of institutional elder abuse. In using the photographs of Margot Bentley, above, is the CBC guilty of it?
About three years ago, my mother started having trouble sleeping. She was 82 and had been living in a nursing home since 2010. In 2008, a stroke had left her paralyzed and a subsequent amputation meant she would never walk again.
Her problem was worry and her focus was money. She was constantly asking me about it. All my reassurances failed–it seemed nothing could quell her fears.
Because I had recently purchased property, I wanted to give her joint ownership in the event I predeceased her and my will went into a long process of probate. Although I knew her stroke had caused some brain damage, she was still lucid and observant. So I called a notary and asked him to come to the nursing home first and to draw up the papers later.
The notary was a young man and he listened to both my mother and I, then asked her questions about where she was born, where she had lived and what property she had owned.
The questions were gentle, but I knew he was testing her mental capacity. She answered correctly if slowly, and because she comes from the old country, was shy about discussing money with a stranger. Nevertheless, he reassured her and we got through the interview. At the end of it, he asked me to stay behind as one of my mother’s companions wheeled her back to her room.
He got straight to the point. “What are you doing?” he asked. From there followed a barrage of rapid-fire questions, all of which were designed to elicit my intentions. It was clear he was taking a suspicious approach.
It took me by surprise. However, I soon realized he was acting on my mother’s behalf, making sure I wasn’t trying to pressure her in any way. So I relaxed, explained my rationale and, to prove I had my mother’s trust, showed him my power of attorney papers. He asked why I had bothered asking him to come; simply bequeathing her the property, he said, would have been just as effective.
So I told him about the lengthy probate that had frozen my father’s assets and the panic it had caused my mother. I also told him about her background as a post-war immigrant and her financial worries, which were ingrained, habitual and generally unfounded. I described her current anxieties and her sleeplessness. Allowing her to take part in the discussion, I argued, even when it wasn’t necessary, gave her a voice in matters. I especially wanted someone official to tell her her finances were in order.
“And if something happens to me, I want her to know she’ll be looked after. People with children do this all the time, don’t they? Plan for a sudden, unexpected death?” He nodded and said he would waive the fee he usually charged for home visits.
I’m telling this story because I’m concerned that the CBC is delving into the world of euthanasia porn yet again and telling another horror story, this time of the-parent-who-just-won’t-die variety. There are shades of institutional elder abuse implicit in the CBC’s coverage, the kind that is so subtle it rarely gets put in the spotlight. This time the story is about Margot Bentley, the one-time nurse whose advanced dementia is apparently causing a legal furor, particularly over an advance directive she wrote in 1991.
It stated she wanted no food or water should she reach the stage where she could no longer recognize her family. According to the CBC, onlookers are horrified by Bentley’s loss of control over her life, fearful it could happen to them. It’s surprising since at least one problem with Bentley’s advance directive is obvious. Saying that she wished “not to be nourished” in any way meant Bentley was demanding that personal support workers (PSWs) starve her to death, an ethical quagmire so daunting, and a proposal so illegal, that even asking them to manage its refusal was onerous and unfair. If there are lessons to be learned here, it’s about Bentley and her daughter’s profound ignorance of end-of-life law, a bizarre state of affairs given that they are both nurses.
But the CBC will not be critical of them. Instead they will be critical of a legal system that does not bow to personal wishes, however outlandish those wishes may be. And just to make this clear, Bentley’s wishes really were ill-conceived and poorly articulated. She may as well have said: “When I no longer recognize my family, please take me to the river and dump me in it.”
If I am cynical about the CBC, Karin Wells’ radio documentary and Katherine Hammond, Bentley’s daughter, it’s a cynicism borne of experience. My mother became disabled eight years ago, and since then I’ve spent time in and around hospitals and nursing homes. I’m a member of that fraternity of familial caregivers, the ones who almost to a man or woman end up taking care of an ailing parent single-handedly. We’re the tired-looking ones who, when we meet our fellow travellers, compare calamities and ask, “Are you an only child?” The most common answer is some version of “No, but I may as well be.”
It’s an admission that usually takes the conversation in the direction of other siblings, who, for one reason or another, are not involved in their parent’s care. However, it’s also triggered darker conversations about avaricious family members, the ones who start angling for inheritances before their benefactors actually die. These stories would be hard to believe if they weren’t so common: about three-quarters of the people I’ve spoken to have at least one relative who qualifies as mercenary, and at least two have parents they deliberately placed in nursing homes for their own safety. These sons and daughters weren’t worried about falls or strokes–they were worried about greedy relatives.*
I don’t know Katherine Hammond, but I do know that her mother has had dementia for 16 years and that according to the CBC, she still “lingers on.” (Cue the sad piano music.) As someone with experience, I am qualified to make some observations.
The CBC emphasizes that Hammond is herself a nurse. While to outsiders this may suggest she has professional as well as familial authority, to those of us in the know, it actually raises more questions. Surely she knows her mother’s wishes were not stated clearly enough (“no feeding tubes” would have been better) and that Fraser Health owes its duty of care to her mother and no one else. Even with the recent changes in law regarding assisted suicide, Bentley’s directive was written in 1991, decades before the decision was made.
Hammond states her mother is being fed against her will, while Fraser Health says Bentley voluntarily opens her mouth when prompted with food on a spoon. Hammond’s assertions, taken together, are contradictory: if her mother is unable to consent to being fed, how can she consent to having her images (especially before and after) used to further a political agenda? This is important because Canadian hospitals and nursing homes expressly forbid the taking of unauthorized photographs of patients as it violates their privacy. Fraser Health has been criticized for involving the police and refusing to release Bentley to Hammond’s care. In my opinion, this is the right decision: Hammond’s use of her mother’s images, clearly done without consent, casts significant doubt on her competence and her ethics.
The support for Hammond reflects a larger, biased attitude toward the elderly in Canada. A huge frustration for myself and other familial caregivers is the condescension we experience at the hands of some healthcare workers. Let me state for the record that I’ve met plenty of great nurses and PSWs, but given dire staff shortages, individuals not entirely suited to eldercare can find a new job within an hour of being fired from an old one. In some regions, all they have to do is pass a phone interview. Their numbers are significant, meaning their poor attitudes can affect staff morale, even in good institutions.
Here’s what I’ve experienced: I’ve been encouraged to lie to my mother so as not to upset her; I’ve been told my mother was “just sleeping”, when it was clear she’d been drugged; I’ve been in doctor’s offices where the doctor has directed his words at me and ignored my mother completely; I’ve walked into her room, only to find a nurse shouting at her as if she’s deaf, when her hearing is fine; I’ve been lied to myself and spoken to like a five-year-old who needs to have the ABC’s of eldercare spelled out, this despite the fact that I always state, upfront, that I took care of my mother at home for two years. For those of us who don’t want to lie to our parents and who strive to treat them with unconditional respect, these behaviours are demoralizing, especially given their constancy.
Hammond is lucky to have found good staff at her mother’s nursing home. However, she has said: “When caregivers, well-meaning people, say ‘But we have to feed your mom.’ I say, ‘This isn’t about what you want — this is about what my mother wanted.'” The problem is that what her mother actually wanted in 1991 isn’t clear; if it were, her advance directive would have been written in a more legally binding way. If I were a judge, I would have to take into account Bentley’s work with dementia patients and her ability to find a lawyer who could have helped her state her wishes succinctly. Erring on the side of caution, I too would reject Hammond’s claims.
Patients like Bentley, who live for a long time after a poor diagnosis, can start running out of the resources to pay for institutional care. For example, my mother’s nursing home is a government sponsored one and costs her roughly $1,500 a month. Although she planned well and has the money to pay for it indefinitely, not all families are so fortunate. This raises the question, how many adult children are willing to forego their inheritances and sell their parents’ homes in order to pay for long term care?
Even the most diligent caregivers are often pressured, by their siblings, to change a parent’s DNR status based on finances. For example, in Quebec there are four levels of intervention, one which would most definitely hasten death should a secondary health crisis, for an already compromised senior, occur. While I agree with everyone’s right to refuse life-extending treatment, I am less comfortable when saving a future inheritance is the goal. I’ve had conversations with other familial caregivers who have faced exactly that kind of pressure from their siblings. This raises the question: Did Karin Wells look into Hammond’s finances? Did she investigate the possibility that finances or inheritances might be factors in the public relations battle Hammond and other interested parties are waging? Or did she, as is the current vogue, #believeallsurvivors and dispense with the footwork required for a fair investigative documentary?
Since it does seem there is no such thing as bad publicity, I am loathe to give the CBC any more, even if it’s to complain about their obsession with euthanasia. However, there are dots that need to be connected here. As Garry Marr of the National Post wrote in 2013, “according to an HSBC Bank report released in September, 2013…39% of working people are banking on some type of inheritance with the median value expected to be $77,213.”
This is where the term “waiters” comes from. It describes those Canadians waiting for an inheritance and the largest population of them live in B.C., where the housing market has turned many middle-class Canadians into millionaires. Is it a coincidence that that is where support for assisted suicide is the strongest?**
No doubt I will be excoriated for suggesting Hammond may have financial motives, but the tell here is her choice to publish photos that, if her other statements are to be believed, her mother would not have wanted published.
Since 2008 I’ve come to the conclusion that there are two kinds of familial caregivers. There are those of us who could be accused of an over-seriousness, a tendency to see everything from our parents’ perspectives. We are also the reliable ones, the ones who show up regularly. On the other hand, there are those who talk about their mothers or fathers as if they were recalcitrant children, silly and capable of mischief, and, of course, not worth taking seriously.
It takes substance to build a life without becoming a waiter, or to trudge through the process of caregiving, staying fully committed to decency. Hammond says this is about her mother’s wishes, but I really don’t think so. I suspect it’s all about her.
* Although the PC Brigade won’t like this, many paid caregivers, especially those who come to Canada through the Live-in Caregiver Program, are surprisingly adept at creating their own golden handshakes. There is a robust industry in nuisance suits filed by foreign caregivers when their employment contracts terminate. False accusations of abuse–including labour, sexual and otherwise–can be settled for payouts of $10,000 or less. Counsellors and lawyers who volunteer at ethnic organizations coach these caregivers how to launch these suits in return for a share of the proceeds.
** Depending on which poll you read, B.C. and Quebec take turns scoring highest on support for assisted suicide.
What follows is a revised and expanded version of a talk I delivered to a group of students from the University of Sydney. I was on a panel with Gerentologist Dr. John O’Beid and Jeremy Bell, philosopher and Monash Scholar.
I’m a 44 year-old with Spina Bifida Myelomenengocele. This is the most common form, and one of the most severe. I also have hydrocephalus, which is excess cerebrospinal fluid around the brain, that is drained using a shunt. As an infant, when doctors found there was nothing more they could do to help me, my mother took me home, where it was thought I would die. But here I am.
My involvement with combatting euthanasia began after hearing about the effects of the Gronigen Protocol, introduced in the Netherlands in 2005, which permitted pediatricians to euthanize infants. From its introduction to 2010, 22 infants, who all had Myelomeningocele, were killed. They had a disability, not a terminal illness. All were given a paralytic agent before death, to stop them moving and thus alleviate the suffering of their parents who had to witness their deaths (Caitlin and Novakovich, 2008 in Kon, 2008). This would have induced terrible pain.
These children were all considered to meet four criteria in the Gronigen Protocol. I will give two of these, “Hopeless and unbearable suffering” and “Predicted Lack of Self-Sufficiency”, special attention, showing that they run counter to dignity.
I have had many operations over my time, and can thus testify to the improving treatment of, and prospects for people with Spina Bifida, from the perspective of a patient’s in a medical model. I have also been at the forefront of change from a social perspective. For instance, I was the first child in Canberra, and possibly in Australia, integrated into the mainstream education system from a “special” school in the 1970’s. Euthanasia laws permit killing on the basis of perceived physical suffering, whereas for people with disabilities, the real anguish arises in a large part due to a mix of social, financial and emotional factors. Not only are medical professionals prognoses often wrong, as in my own case, but they also often veil discriminatory attitudes towards people with disabilities. This discrimination is based on the perception that our quality of life is poor and that we are better off dead.
According to Alexander Kon (2008), writing about the Gronigen Protocol, healthcare providers, the general public, even parents overestimate the difficulties of having a disability. They undervalue the lives of those of us with disabilities. Uncritically accepting euthanasia would condemn many to death whose genuine sufferings were nonetheless bearable.
Looking at specific criteria of the Gronigen Protocol, we see how these articulate an erroneous view of disability in general, and Spina Bifida in particular. The first is “Extremely PoorQuality of Life (Suffering) in terms of Functional Disability, Pain,Discomfort, Poor Prognosis, and Hopelessness”. The meaning of hopeless and unbearable suffering has often been debated and questioned, never specified. What’s more, if this is considered to mean “acute, chronic pain that cannot be overcome by modern means”, then infants with Spina Bifida seem never to meet the criteria.
As of 2010, no studies had been undertaken evaluating patients with Spina Bifida using appropriate pain scales. If no studies had been done showing unbearable pain was a factor in MMC, why is it included in the GP as a criteria? For the record, the most pain I have had, on a consistent basis, was from spasms down my left leg, following spinal surgery about twenty years ago. The pain was alleviated with half a tablet of Valium. Two days went by in a haze. I never wish to sleep with the Prince again.
“Predicted Lack of Self-Sufficiency”, another criteria, is also not defined clearly, leading to deaths on the basis of speculation. The expectation of the Gronigen Protocol’s authors, and of many others, is that children, adolescents and adults with Spina Bifida – and other disabilities –face an unacceptably low quality of life (whatever that may be interpreted to mean!). The evidence about people with Spina Bifida and people with other disabilities such as Locked-In Syndrome (Laureys et al., 2005) is that we score just as well on quality of life scores as those without disabilities.
For my own part, my quality of life is most abundantly clear. At the time of writing, I am not ill, and rarely am. Even if were sick, this would require care from my wife, family, the medical profession and people like chemists. This community involvement would actually enhance the quality and meaning of my life. But I also contribute by way of being a student, employee, consumer, tenant and so on.
As mentioned earlier, there is no way that anyone could have predicted how meaningful and dignified – otherwise – my life would become, but that never would have been sufficient to justify my death. Only an acknowledgement of the futility of adding further, speculative and burdensome treatment justified how my life was managed in the beginning.
The point I am helping to make, through adding my life-long experience to the well-spring of others’ is to show that these Gronigen protocol criteria are scientifically invalid. That is, they are unsupported by evidence. Indeed, they run counter to Evidence-Based Medicine (Barry, 2010). This is part of a wider problem with criteria set for euthanasia generally – they are vague. They are open to interpretations that ensure desired outcomes. In moving patients towards those outcomes, social and other factors influencing medical professionals’ decisions are not taken into account. Thus the way is prepared for people to die who should in stead continue to get support to live.
Another term, which has been used to both support and oppose euthanasia is “dignity”. Not unlike the terms of the GP, some have declared so vague as to be unworkable. The word has been hijacked by those wanting assisted suicide or euthanasia, insofar as it appears in the titles of many of the bills they champion.
Three versions of dignity have gained prominence in human history. I would say, along with Carlo Leget, co-founder and co-chair of the European Association for Palliative Care task force on Spiritual Care in Palliative Care (2013) that separately, they are only a partial defense in terms of protecting against euthanasia. In cooperation, however, they may nourish each other, and provide a defense against practices like euthanasia and assisted suicide that attack people on society’s margins.
First we have dignity as public recognition of our position within society. This is neither permanent nor stable. Those in power have the ability to confer or withhold it. This social dignity depends for its sustenance on a group of other people. One difficulty, which I and other people with disabilities find painful, is that our relative social isolation means we have fewer people to sustain the sense of having a position in society. Another problem for us, especially if we have communication disorders or impediments, is that it is relatively difficult to have our status acknowledged by groups of people who “matter”.
Second, we have the notion of intrinsic dignity, one that is in our very nature. It would seem to be pretty stable. But actually, it may only be as enduring as the credibility or acceptance of authorities like the Church, or philosophers proposing this view. This is the problem that many Right to Life groups face when confronting euthanasia and so on.
Thirdly, subjective or experienced dignity, a recent invention, depends only on what individuals say they feel. It is like a glass that can be filled up with whatever you like, when you like. It is not hard to imagine, in the light of the subjectivity of GP criteria, which reflects the nature of other Dutch euthanasia regulations, that 62% of reports to the Regional Review Committees in 2006 made some reference to loss of dignity. It was this subjective, individual and indefinable (postmodern?) beast they were talking about.
All these concepts of dignity are only as good, as lasting as the practices or institutions that created and maintained them in the public sphere.
Perhaps a more authentic, life-preserving understanding of dignity exists, that is not forced to fit predetermined categories or frameworks exists, that goes against the grain of euthanasia and assisted suicide laws.
Well, it does. Carlo Leget proposes just such a model, which I believe can be seen from the perspectives of a wide range of people, perhaps all, not only those receiving Palliative Care, which is Leget’s original viewpoint.
It starts with the meaning of dignity that people, especially vulnerable people, such as those with disabilities find when they recount and share their life experiences with those interested in understanding their viewpoints. So it goes without saying that to be successful, this public interest requires further nurturing.
It then analyses the quality of the people’s caring relations with professionals, close family and friends, and others, even pets, who need feeding or exercising. So, examining my own example, I currently enjoy good relations with family, and these are most responsible for the qualities, virtues and attributes that make the person I am, above and beyond being simply human. The friends that I have had throughout life nurture my personalities and are involved in the experiences outlined in the first stage. They are a help in bearing life’s difficulties, and celebrate my achievements.
Professionals include the doctors, nurses and therapists, and also the teachers, who helped me acquire the raw skills and abilities needed to function in life. Most have acknowledged my humanity to various degrees, but most have also done things that have, from time to time, been painful, frustrating, degrading or discriminatory. My thoughts about these types of people is decidedly mixed. For example, there was the spinal surgeon who inflicted pain by hanging me up from the armpits to see the extent of my scoliosis and who took away the dignity of my name by deliberately mispronouncing it. As a child at the time, I was unsure about how to communicate my dislike of his ways. Later there was a nurse, who, when I was suffering and had had brain surgery, took such loving, respectful, friendly care of me, including good-night kisses, that I regretted not feeling well enough at the time to have taken the possibility of a relationship further.
People who have come from time to time to help clean my apartment, fix my scooter and other things have given opportunities to apply their skills and talents, adding to my wellbeing. I, in turn, add to the general wellspring of gratitude, and contribute economically to their welfare.
Finally, Leget’s model of dignity focuses on the person’s social status, in the broadest sense of being a member of a community. I am a more or less active member of several communities, all of which are more or less prominent in my conscience as the days, weeks and months pass. Today, I may visit the supermarket, where I meet the friendly owner, who is happy to see me. I reciprocate the smiles of fellow customers, joining their efforts to put dinner on the table for those at home. Tomorrow, I may call the landlord on some maintenance or rental matter, and be reminded that I am one of many sharing the burdens of keeping up a home. The community of librarians at the library I work at have built up my skills, which are needed to answer requests for all kinds of materials from people around Canberra, Australia and the globe. I am occasionally reminded, via posts on social media groups I belong to, that others with disability often lack the kind of dignity-enhancing connections that I have made. I hope not to take them for granted, and to make the most of them.
Our communities may be small or large, many or few. They may be so spread out as to need a car or public transport to reach out to them, or small enough to traverse on foot. Whatever the case, these are the environments and people who contribute to and gain from our unique sense of dignity, which accumulates with time and experience, however brief or humble.
This kind of dignity, starting simply from membership of the human family, grows organically through sharing similar life-experiences equal to others. Participating in relationships with people and naturally acting in a community also play their part. This sense of being human and thus having worth is inter-subjective, upheld by people who are, and have been ininterrelated caring relationships. I believe this kind of dignity is closely attached to authentic compassion, which is suffering alongside others, recognising and sharing in this unavoidable aspect of being human.
I have shown how criteria given for permitting euthanasia, especially infants with Spina Bifida are invalid, in the light of evidence of people with disabilities’ satisfaction with life. The use of the term “dignity” as it is widely understood in two senses is also unhelpful to efforts to prevent doctor provided or assisted death. A focus on dignity understood from the perspective of broad community relationships will, I believe, be effective in tearing down the edifices of euthanasia and assisted suicide.
Kon, A. A. (2007). Neonatal euthanasia is unsupportable:the Groningen protocol should be abandoned. Theoretical medicine and bioethics, 28(5), 453-463.
Laurens, S., Pellas, F., Van Eeckhout, P., Ghorbel, S., Schnakers,C., Perrin, F., … & Goldman, S. (2005). The locked-in syndrome: what is it like to be conscious but paralyzed and voiceless?. Progress in brain research, 150, 495-611.
Barry, S. (2010). Quality of life and myelomeningocele: an ethical and evidence-based analysis of the Groningen Protocol. Paediatric neurosurgery, 46(6), 409-414.
Leger, C. (2013). Analyzing dignity: a perspective from the ethics of care. Medicine, Health Care and Philosophy, 16(4), 945-952.
“Other tactics employed by suffragettes included chaining themselves to railings to provoke an arrest, pouring harsh chemicals into mailboxes, breaking windows at prestige buildings, and night-time arson at unoccupied buildings. Many were imprisoned in Holloway Prison in London, and were force-fed after going on hunger strike.”
We owe a lot to early 20th century suffragettes. However, we no longer need to take extreme measures. I’ve provided an example of how we can use passive-resistance to deal with sexism, especially in fields like medicine where it is still endemic.
Dr. Gabrielle McMullin, a vascular surgeon in Australia, has angered feminists around the world. She believes women med students would be better off complying with sexual advances made by male superiors.
As someone who recognizes the value of realpolitiks, McMullin’s observations resonated with me.
When I was an undergrad I was harassed by an academic, a professor who also organized an important, yearly event in Toronto. His harassment was sexual innature, but I suspect an emotional conquest was his real goal. He seemed to relish having a harem.
His pursuit of me was open and obvious. He would distribute handouts around the room—it was a well-populated seminar—and when he got to me would say, “Oops, no more handouts. Miss Ogrizek, you’ll have to pick yours up at my office.” This was before the Internet, and the University of Toronto, at that time anyway, was notoriously short on photocopiers.
When I did go to his office, he would typically invite me to sit down. Then he would stare deeply into my eyes, no matter what I said. So a simple comment like, “Um, yeah, I need the handout we used in class today,” was met by a penetrating gaze, one designed to elicit my most carnal fantasies.
As the course drew to a close, those squirmy encounters became less bearable. I finally decided that the next time he pulled the “Oops no more handouts” routine, I would not go alone. I would take a friend.
It made him visibly unhappy. So unhappy in fact that after my friend and I left, and he shut the door behind us, he lost his temper. As we hit the exit we heard a loud crash and once out on the street, we heard footsteps running up behind us. When I turned around, a student from the class stood there and breathlessly asked me what I had done to make him so angry. Apparently he’d thrown a large metal camera case at a wall, liberating artwork hung on the walls both inside and outside his office. Students had seen the case and pieces of camera equipment strewn about when he opened the door and burst out of it frantically looking for someone. Because I had been there last, they sensibly assumed it was me.
I didn’t think I was upset. However, walking through Queen’s Park the next day, I experienced sudden and severe chest pains. Two students saw me faltering and helped me along to the campus clinic. Once there I was asked whether I wanted a male or female doctor. I’m generally not choosy, but that day I asked for a woman.
I had no idea what was about to transpire—that she would ask questions that would prompt a confession I hadn’t consciously made even to myself. I told her I had been offered a provisional full scholarship to graduate school and was concerned about how the professor’s instability might impact it. I also admitted I had underestimated the depth of the problem. After the appointment was over, I walked home knowing I would never have to see the man again. The doctor agreed I needed to drop the course—this only weeks before the end of term—and offered to write a letter providing me with a medical excuse. The relief I felt almost bowled me over.
It didn’t last. Within days I was taking my first steps into an emotional trough that was to last several months. I lost a lot of weight. I started talking to myself, sometimes in public. I did not walk; I stomped. When I tried to describe the experience to a friend, I told her it was like trying to chew my own ears off.
The reasons for it weren’t hard to understand. In a financial sense, the experience cost me. I now had to give up the earnings I would make during the summer so that I could make up the credits. It meant taking out a student loan and going into debt. In an emotional sense, I felt a total failure. Tyrannical men typically don’t frighten me—my father was one so I’m usually unfazed—but this man had slipped under my radar and fooled me into thinking he was harmless. I also resented the system. It was one that would dent his career slightly if I reported him, but had the potential to hinder mine considerably, especially come Ph.D. application time. I knew that being a tattle-tale, even in those hysterically feminist times, could be a career-ender.
I also had my own incredulity to contend with. My sense of grievance originated with the idea that I had been born into a courageous family. My father had been a partisan in Yugoslavia during the second world war and my grandmother, on the border of Slovenia and Austria, dealt with Russian occupiers in ways that earned her the admiration of her community; she was considered a hero. So it seemed inconceivable that my career path could be interrupted by a man who simply had trouble controlling his emotions. It was like being rejected by a prestigious university for being a dollar short on tuition.
On one particularly bad day, I stopped in at the local rape crisis centre. I hadn’t been raped so going there meant admitting to myself that I was in very bad shape indeed. I told a counsellor so, but luckily she divined my emotional state and offered to listen regardless. That visit provided me with a faint hope that I might, one day, feel okay. The reason? When I told the counsellor that I wanted to make the professor experience what I’d experienced, she did something I didn’t expect. She told me how to do it.
Letter writing used to be an art. Letters of the sort the counsellor was suggesting were less about art, however, and more about being artful. There were rules: I could send letters to the man to remind him of his bad behaviour, but there were to be no threats, no anger and no misstatements that could be used against me legally. The letters’ power, she said, came not from their content but from their quantity.
She suggested sending them in an irregular pattern. When I asked how many and for how long, she cryptically replied, “Until you feel better.” For some women, that meant weeks, for others, years. It was a therapeutic and legal way for women who knew their abusers to exert power over them. These men came to dread the letters, she said, despite their apparent banality.
I was sceptical but had no other options. Reporting the professor would change the focus of my studious life and I had already had an emotional eruption, the intensity of which had taken me by surprise. So when this same woman suggested sending the letters anonymously and offered to mail them for me, I became more interested. The whole point of keeping silent had been to protect my reputation, so the prospect of creating a nuisance without the commitment of signing my name to it, appealed. I set about researching just how I would do it.
Not writing angry letters meant being my best passive-resistant self. The counsellor had said, “Imagine him taking them to the local police station.” What she meant was that they had to look harmless to unbiased onlookers. She also suggested including personal information about him. So I spent the next few weeks calling on all my resources—friends, that is—to ask them for every possible detail they knew about the professor.
I discovered that for a man who liked to push personal boundaries with his students, he kept his own life awfully private. However, I had some luck when I one friend referred me to a disaffected grad student who had studied under him. She provided me with an admittedly sketchy overview of the man’s life, but it was enough to get me started. I discovered he was married to a middling socialite and that he believed most of his female students were in love with him and that his male students wanted to be him. A classic narcissist, in other words.
Around halfway through the next semester is when my assault started. I began by sending letters of concern. I created the persona of a caring and anonymous onlooker, someone who wanted to help him sort out his complicated and difficult life. I introduced what information I’d gleaned and made references to unnamed students he’d hit on and “repeated” comments they had made about him. Some of this information was flattering because I wanted to hook him on that flattery; the rest damned him with faint praise and unleashed in me a viciousness I had not known I had.
In the end, some letters were pleasant, some less so. Some were about what I had done that day; some were philosophical treatises. What they all had in common was that they were over-familiar and assumed an intimacy that was wholly fabricated. All of them were mailed from Toronto courtesy of the crisis centre, which created the impression that the woman who so adored the professor was near at hand. They were creepy, yes, but calculatingly so.
The effect the letters had on me was liberating. I was a student of literature after all and so saw this escapade into bad behaviour as an instance of putting my education to good use. Who says arts degrees are a waste of time, I often thought. The one downside was that I could not investigate their efficacy. By necessity, these letters disappeared into a black hole; if I betrayed knowledge of them to anyone who knew him, the illusion could be shattered and my mission failed. So I kept quiet, wondered how on earth the letters were being received; if I suffered at all, it was only with a growing sense of curiosity. My anger, so profound at the outset, did gradually lift, as the counsellor had predicted. The letters were a safe release directed at the right culprit.
What I appreciate about Dr. McMullin’s statement is its honesty. Looking back I know I would handle an over-familiar professor very differently today. I would weigh the cost of capitulation against the cost of speaking up and decide accordingly. Would allowing that professor to believe I was one of his groupies be worth avoiding his wrath? I think it might. That isn’t the same as agreeing to abuse: having been alive long enough, I know that men who force themselves on women who don’t want them are objects of pity. I recently capitulated to a physician in a hospital setting too. When he got flirty, I flirted back. I did not like the man and was not attracted to him at all. However, he had the upper hand in circumstances where I didn’t and I wanted a positive outcome. I held my nose and played along.
The first wave of feminism was started by suffragettes who agitated for women’s right to vote. Their suffering has allowed us women in the west to prosper. But we’re heading into very different times. The nuances of sexual liberation have created a complex grey area where negotiation and its success or failure can be largely subjective. We need to accept the truth of Gabrielle McMullin’s words. We may not like them, but they’ve got us talking, and that’s a good thing.
Postscript to Suffragettes, Medicine and Passive-Resistance: 16 years later, and completely by chance, I discovered the professor had indeed found the letters difficult. He apparently took a leave of absence, did some soul-searching and returned to teaching a chastened man. It’s likely he was motivated primarily by fear, but regardless, he stopped behaving inappropriately with his students. I want to add here that while this strategy worked on this occasion, it comes with risks. Before undertaking something like it, please consider your own safety. Ask yourself: Can this man harm me in any way and will I be risking my reputation?
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How to control Canada with terrorism: Envelopes with white powder were sent to four Canadian cabinet ministers. They are all conservatives and a note in one envelope had Conservateurs, vous serez anéantis or Conservatives, you will be annihilated written on it. This is the latest act of terrorism act directed at the government. For now, the origin of the envelopes is unknown.
I can’t pinpoint the exact person (or group) responsible for these missives, but I can hazard a guess at why they were sent. We are living in a privileged country, but our government officials, particularly those holding some of the highest offices, reflect our apathetic citizenry: many public servants are slow to respond to Canadians, if they respond at all, and there is little suppleness in their responses to individuals in need.
Many hold Prime Minister Harper and the conservatives responsible for this, but in fact it’s a problem that’s developed over decades. Most of us in this country have everything we need and so as sated constituents we may grumble, but we rarely raise a fuss over lesser deficiencies of government. It’s created a system with the momentum of molasses.
I’ve written at length about my mother’s experience in a Canadian hospital, so I’ll give just a brief recap here. She was elderly and suffered a serious stroke while she was in having an infected toe treated. The attending physician thought he knew best and so he and his staff gently eased her towards death. They accomplished this by not explaining all my family’s options, leading us to believe that letting her go was the only one we had. The problem? She was fit for her age and explicitly said she wanted to live, even with the consequences of her stroke. I got her out of the hospital alive, but not before experiencing abuse that I suspect shaved years off my life.
In the aftermath, I wrote letters and letters and more letters. No one from the health system responded and I was told that, given my mother’s age, taking legal action would be pointless. (It would have been symbolic: we were not seeking a financial reward.) So I remembered a trick from my student activism days and started writing letters to the physician himself. The letters were not threatening or even unpleasant, but I assumed they would eventually become noisome and that I would, in due course, receive a lawyer’s letter asking me to stop. That happened and I did stop, but my point is that since it was impossible to engage anyone official, sending letters seemed the only way of creating what I hoped would be a meaningful disincentive. I hoped the physician might think twice before leading another elderly (and unwilling) patient toward death, especially if I could make him wary of encountering another tenacious relative like me.
It was not an optimal option. Someone in the health system should have responded to me. But since my mother’s hospitalization, I’ve come to understand that most officials in our government don’t bother with the little people. I do think our Canadian apathy is part of the problem, but it doesn’t explain everything.
Fast forward to October 15, 2014. I’m at the Supreme Court of Canada and it’s raining on and off. I’m waiting for friends and as I’m doing so, I meet a young woman in a wheelchair. The front of the courthouse doesn’t have obvious wheelchair access and she is waiting for other disability activists who will know how to get in. As we wait, shuttle buses pull up and offload a small crowd of people wearing yellow scarves. The scarves are symbols of their support for the decriminalization of assisted suicide. The young woman and I are on the opposing side of the debate.
Here is what happened and here is a copy of an email I sent to the registrar at the Supreme Court:
I attended the hearing of the Carter Case at the Supreme Court today, October 15th. I had an odd experience, one that I think may loosely fall under the auspices of security and/or administration. I hope you are the right person to contact.
I was waiting outside the courthouse at approximately 7:20 AM when an elderly woman wearing a yellow scarf came up to Taylor Hyatt and myself. (The yellow scarves indicate those who support assisted suicide.) Taylor is a young Carleton student and is in a wheelchair. The elderly woman greeted us and then stood there beatifically, saying nothing. It seemed odd and then I saw a man, one who later (and rather reluctantly) told me he was Kevin Eastman, filming us from approximately 12 metres away. There was no one else in close proximity to him or to us and so I am certain of what I saw.
I instinctively moved to shield Taylor and then I noticed the woman with the yellow scarf shifted her position in order to not be obstructed by me, so that she could “stay in the frame” and continue being filmed. I walked a few feet away and told Taylor I needed to speak to her privately. I’m not even sure why I felt the need to shield Taylor, but something about the situation just didn’t feel right. Because Mr. Eastman was behind her, Taylor did not realize what was happening.
At any rate, I think Taylor and I got caught in a stealth photo/film-op. Taylor and I are on the other side of the argument – we oppose assisted suicide – and so I’m guessing Mr. Eastman was filming the three of us to create a film or an image that told a story, perhaps one Taylor and I would not find agreeable. I did not confront the elderly woman because I was aware I was being filmed.
I did notice Mr. Eastman later, in the foyer of the courthouse. He seemed very friendly with others wearing the yellow scarves. I also saw the elderly woman in the foyer. She was with the woman lawyer from the BC Civil Liberties Union. I took photos of both of them and have included them here.
Taylor and I are concerned because we would not have willingly given our permission to have ourselves included in a film clip, however short, of the kind Mr. Eastman shot. I don’t know how to contact him – there is a filmmaker named Kevin Eastman, but he is an American filmmaker based in Los Angeles. However, I’m assuming Mr. Eastman had permission to be in front of the courthouse and inside of it since he was among the journalists who were filming in the foyer.
I’m wondering if Mr. Eastman can be contacted? We would like to communicate our desire not to be included in any film he is making.
The proceedings in the court that day bode well for supporters of assisted suicide and indeed, as was recently announced, they were granted their wish to have the issue revisited. During the proceedings, Chief Justice Beverly McLachlin made no secret of her disdain for those opposed to the procedure. So I wondered if the young filmmaker was given special dispensation to film, as he was filming inside the lobby of the court. I assumed, and I think correctly, that to do so he must have gotten clearance. So when this email was not answered, I asked for a follow-up and was told the email had been sent to the appropriate authority. That was in October of 2014 and I have not heard anything since.
If Beverly McLachlin were standing in the lobby of the court, speaking to a colleague, would she, or perhaps a security guard, be concerned if a heavily tattooed man in biker gear came and stood next to her? And would that guard react quickly if he spied a cameraman some distance away, surreptitiously filming the encounter?
Could that video be manipulated to suggest a relationship that didn’t exist?
Taylor Hyatt was in a wheelchair and could not see she was being filmed. The inquiry I made is reasonable. The cameraman, and the woman who joined us, were taking advantage of Taylor. They knew she would not know she was being filmed. I also suspect that the name the cameraman gave me was false: Kevin Eastman is a filmmaker, but he looks very different from the man I saw and he’s based in Los Angeles, California.
Why aren’t Taylor’s rights important? And why would the B.C. Civil Liberties Union support this kind of trickery? Neither Taylor nor I would knowingly contribute to a film in favour of assisted suicide. Even a simple response from the Supreme Court registrar, one like “We understand your concern, but we can’t help you,” would have sufficed.
The vast majority of disabled Canadians oppose assisted suicide. They feel vulnerable because they feel the disabled are more likely to receive substandard care in our hospitals. In my opinion, what happened both inside and outside the Supreme Court validates their fears. It reflects an unnerving “let them eat cake” attitude.
Michael Zehaf-Bibeau’s video, wherein he explains his shooting rampage in Ottawa, has just been released. Critics of the conservatives are railing against the fear quotient this is raising, asserting the government is using the threat of terrorism and fear-mongering for its own advantage.
The problem with their argument? Those on the liberal edge of government aren’t any better. They are also using fear to bring into being a medical procedure that comes with unacceptable risks. Unnecessary deaths in Canadian hospitals—after assisted suicide is legalized—are a foregone conclusion, a conclusion that those on the political left are refusing to accept. For all their cries of the Harper government’s secrecy, “progressives” too have worked hard to poison the atmosphere around assisted suicide, to discredit and embargo unfavourable information from regions where the procedure is legal. Apart from the work of a few thoughtful journalists, articles about the downside of legalization are just not making it into our media. I can’t state this strongly enough: it’s a dangerous omission.
Security in all its dimensions is an issue for Canadians. My mother’s hospital, the Supreme Court, and our capricious media could do with some improvement too.
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All wolves are not of the same sort; there is one kind with an amenable disposition – neither noisy, nor hateful, nor angry, but tame, obliging and gentle, following the young maids in the streets, even into their homes. Alas! Who does not know that these gentle wolves are of all such creatures the most dangerous!
– Charles Perrault on his sinister version of Red Riding Hood
Quebec lags behind other provinces when it comes to approving cancer drugs. The provincial health agency, INESSS, has rejected 10 of 12 recently put forth for assessment. Many of these same drugs have been approved in other provinces. The Coalition priorite cancer au Quebec has spoken out, asserting economics were behind these decisions and that Health Minister Gaétan Barrette should overturn them. What’s happening in Quebec should be of concern to those in other provinces.
Answering was Renée Latulippe, an INESSS spokesperson. Suggesting that efficacy and price were concerns, she also said INESSS was in talks with pharmaceutical companies over the price of the drugs. She then described the criteria for funding as:
…the fairness of the medication’s pricing, the relationship between the cost and the effectiveness of the medication, and the consequences of adding the medication to the (provincial formulary) for the health of the population and on the other components of the health care system.
However, by linking efficacy and price Latulippe contradicts an earlier statement she made, when she asserted that pricing was not a “predominant” criterion. James Brophy, who has sat on the board of INESSS since its inception, has contradicted himself too. He’s a cardiologist and a professor and had this to say about the drug-approval process:
…economics may enter into consideration for other drugs. INESSS has an ethical responsibility to all Quebec citizens, not just cancer patients, to rigorously evaluate and prioritize purchases. Surely there are economic limits to what we can afford to delay a death, especially as this delay may be only weeks. Be it $20,000 or $20 million, there is a limit somewhere.
Brophy started his op-ed, published in the Montreal Gazette, by insisting money was not the issue when it came to rejecting drugs. However, by the end he segued into that ubiquitous narrative—about the dying patient and the thousands it takes to keep her alive—and finally admitted that yes, money actually does matter.
When it comes to the Quebec government, either the right hand doesn’t know what the left is doing or we’re being hustled like marks in a shell game. The fact is that behind the drug-approval process is a darker one—Veronique Hivon’s push to legalize medical aid in dying or, as the procedure is known in plain language, assisted suicide. Many proponents of it believe it too will free up funds for other healthcare sectors.
The dying proclamations of Canada’s publicity-seeking suicides, captured for posterity on YouTube, have had this as a dominant theme. “I don’t want to cost taxpayers any more money,” they cry. In a country where taxes are high, the heroic allure of their martyrdom is risky. It raises two questions that take Brophy’s thinking two and three steps further: Will I be a good citizen and volunteer to save money too? And, hey, why aren’t the elderly and disabled, who are even more expensive to keep, lining up for the procedure?
No New Cancer Drugs and Assisted Suicide
We need to bridge the knowledge gap here. We need to acknowledge that the push to save money is coming from at least two directions. Lifesaving drugs (for all illnesses) may not be covered by the provinces’ healthcare but medical aid in dying will. Choosing the latter will be easier than remortgaging the house to pay for drugs or homecare, especially if that house is intended as a loved one’s inheritance. When we consider that troubling future in a national context, it’s perhaps not surprising that support for assisted suicide is strongest in British Columbia, where housing prices, especially in Vancouver, can triple that of other provinces. Expectant relatives may want to spare an elderly person exorbitant healthcare expenses because it’s in their best interests too.
If you don’t believe this squeeze is coming, you may want to speak to Barbara Wagoner’s family in Oregon. State insurers there refused to pay for cancer drugs that would have extended her life. They did offer, however, to pay for her assisted suicide in their stead.
* * *
Perrault wrote his version of Red Riding Hood in the 17th century. Unlike later and tamer versions, Petit Chaperon Rouge ends with a dead little girl, a dead grandmother and a wolf well-satisfied with his dinner. The moral instruction of the tale has it that even “tame, obliging and gentle” wolves can be dangerous. Medical aid in dying may sound merciful and kind, but we need to be wary of its real costs. Will Canada say no to new cancer drugs? The conflict over drugs may just be the beginning.
If you like this post, please share it on social media and/or make a comment below. My site is designed to offer an alternative to the mainstream media: adding your voice may help those in power remember what common sense looks like. Feel free to comment anonymously.