Decision-Making | Psychotherapy Toronto

Assisted Dying: We Need a Larger Conversation

April 4, 201900Aging, Caregiving, Decision-Making, Empathy, Featured news, Guilt April, 19

Source: Alberto Biscalchin at flickr, Creative Commons

We know that death is inevitable, yet most imagine it in the distant future. But those with a terminal illness face the harsh reality of death’s imminence. Cancer is the most common terminal illness, and in 2016, an estimated 1.5 million new cases will be diagnosed in the US, and almost 600,000 people will die from the disease.

Over the past decade, European countries such as Belgium and the Netherlands have legalized assisted dying. More recently, Canada passed Bill C-14 in June 2016, allowing assisted dying to be an option for those with a terminal illness. According to Health Canada, since the bill passed, there have been a total of 2,149 assisted deaths, and 63 per cent of them were cancer-related.

I lost my grandparents to terminal diseases, and saw what they endured. I wonder what choice they would have made had assisted dying been legal at the time. Both my parents believe that if someone is suffering, they have a right to end their life. As both of them had to care for their own ailing parents, they shared similar sentiments. In my mother’s words:

“You feel frustrated, because you’re helpless. There is no cure and there is literally nothing you can do. You get very depressed, angry, and sad yourself. It’s also so hard to watch someone who was once so strong not be able to tie their own shoe anymore.”

My father recalled a moment with my grandmother, when she could no longer bear her suffering. “I remember being in the kitchen with her and she put her head down on the table and said, ‘I just want it over with.’”

Since my paternal grandparents did not suffer long, my father does not think assisted dying would have been an option for them. My mother, however, feels differently and would have suggested it to her mother if the law would have been in place.

The right to assisted death provides some with relief. Barb Gibson Clifford, from Alberta, has stage 4 uterine cancer and in a short film by Dying With Dignity Canada, explains how this legislation impacts her:

“It’s terrifying to think that, if I don’t have choice, it could be very nasty, both for myself and for my family members. I’m so grateful to those nine judges of the supreme court for choosing to be in consensus about what they were doing. I cheered. I cheered in my kitchen.”

There are others who do not agree with their family members’ choice of assisted death. Former journalist, Deborah Binner from the United Kingdom, watched with inner turmoil and despair as her husband, Simon, made the choice to travel to Switzerland to end his life. This came after he received a motor neuron disease (MND) diagnosis. In her story, she explains how her husband’s choice made her feel:

“I didn’t want Simon to suffer but I didn’t want him to die, either. Watching him plan his own death, while I still wanted more time, was overwhelmingly traumatic. He had rights, but how much of his life was mine? I won’t join any campaign or celebrate his ‘choice’; nor would I condemn any other human being for making the same one.”

In a study of terminally ill patients in the United States, approximately 60 per cent supported assisted dying, but roughly 10 per cent considered it for themselves. Those who were more likely to consider it had depressive symptoms, essential caregiving needs (washing, eating, etc.), and pain. There are still some patients who do not make this choice for themselves.

Michael Wenham from the United Kingdom, who also has MND, writes on his blog, “Investment in universal best palliative care is the true expression of compassion, not the offer of a cocktail of barbiturates, which is a perversion of therapy.”

With assisted dying laws being introduced in a number of countries, there is still a divide. It is a choice that affects many people and their communities. The conversations around Bill C-14 and other assisted dying laws tend to focus on ethics and morality. Yet, it is important that we recognize the human life behind these legislations.

– Amanda Piccirilli, Contributing Writer, The Trauma and Mental Health Report.

-Chief Editor: Robert T. Muller, The Trauma and Mental Health Report.

-Copyright Robert T. Muller

This article was originally published on Psychology Today

Pressures to Breastfeed Can Harm Maternal Mental Health

January 24, 201900Child Development, Decision-Making, Embarrassment, Featured news, Guilt, Health, Parenting, Postpartum, Stress, Suicide January, 19

Source: sevenfloorsdown at DeviantArt, Creative Commons

Florence Leung of British Columbia, Canada went missing on October 25, 2016 while struggling with post-partum depression. Less than a month later, her family discovered that she had taken her own life, leaving behind a husband and infant son.

In an emotional public letter, Leung’s husband Kim Chen wrote an impassioned plea to new mothers asking them to seek help if they felt anxiety or depression. He also revealed that his wife’s difficulties with breastfeeding, and the resulting feelings of inadequacy, likely contributed to her condition. Urging women not to criticize themselves about an inability to breastfeed or a decision not to breastfeed, Chen wrote:

“Do not ever feel bad or guilty about not being able to exclusively breastfeed, even though you may feel the pressure to do so based on posters in maternity wards, brochures in prenatal classes, and teachings at breastfeeding classes.”

Speaking with the Trauma and Mental Health Report, Melissa (name changed) said that she was struck by Chen’s words, and recalled the scrutiny around breastfeeding she experienced with her first child:

“I was tired, sore, and the baby was cranky and constantly wanting to feed. It surprised me that, despite my vocal frustration and obvious difficulty breastfeeding, the nursing staff and lactation consultants were adamant that I continue to breastfeed exclusively.”

The frustration worsened once the couple returned home. The week that followed was exhausting, spent trying to calm a screaming newborn who constantly wanted to feed. The couple attended several breastfeeding clinics that reiterated the same message: breast is best. Melissa and her husband felt confused and defeated.

Shortly thereafter Melissa became completely overwhelmed:

“I began to get scared, and not trust myself. My inability to easily nurse and soothe my baby without intense discomfort led to feelings of failure. My emotions were overwhelming. I wasn’t sleeping because I was constantly pumping breastmilk or nursing.”

Within a week after giving birth, Melissa’s infant was suddenly much quieter and less agitated. Upon closer examination, she noticed that the baby looked pale, and was lethargic and dehydrated. A frantic trip to the emergency room (ER) revealed the newborn was not getting enough liquids and nourishment—despite the many scheduled feedings. Melissa said:

“When the ER doctor apologized for the miscommunication and advised us that supplementing with formula is not only okay, but sometimes necessary, I felt a mixture of relief and betrayal. Relief because I knew we would be okay, yet betrayed by some health professionals who put their personal agendas above our health and well-being.”

In an interview with the Trauma and Mental Health Report, Diane Philipp, a Child and Adolescent Psychiatrist at SickKids Centre for Community Mental Health in Toronto, shared that she meets many mothers suffering from stress, shame, and guilt associated with breastfeeding. Philipp explained that the judgements of others place unnecessary pressure on mothers:

“It’s important for mothers to have access to frank and open discussions that are safe and non-judgemental where they can seek out information and make the most knowledgeable decision that is best for their child and for themselves in terms of breastfeeding.”

Every woman’s situation is unique. Lifestyle habits, medication use, and medical and psychological history can complicate the post-partum experience. With this context in mind, the healthcare team should provide a comfortable environment—free of judgement—when discussing post-partum issues, including how to provide an infant’s nourishment.

For mothers who are unable to nurse, be it for medical, physical, or personal reasons, their decision can be supported and honoured in a way that promotes emotional well-being and encourages healthy parent-child bonding. Philipp said:

“For parents who can’t breastfeed for whatever reason, wonderful attachment bonds can still be made. Breast milk is not the only ingredient in a valuable, long-lasting relationship.”

Melissa, now a mother of two healthy school-age children, remains sensitive to others’ assumptions of breastfeeding:

“I felt so pressured to get it right, and so judged when I couldn’t provide for my child. Even when you come to terms with your decision not to breastfeed, people question your choice. Looking at my children today, I know I did the right thing.”

– Kimberley Moore, Contributing Writer, The Trauma and Mental Health Report.

-Chief Editor: Robert T. Muller, The Trauma and Mental Health Report.

-Copyright Robert T. Muller

This article was originally published on Psychology Today

Mental Illness in Youth Often Goes Undetected

December 27, 201800Adolescence, Anxiety, Child Development, Decision-Making, Depression, Emotion Regulation, Featured news, Health December, 18

Source: Zarina Situmorang at DeviantArt, Creative Commons

When university student Kinga (name changed) was young, she struggled with symptoms she couldn’t identify. She had shortness of breath and would suddenly get anxious. Her mother took her to a doctor, and Kinga was diagnosed with asthma. Despite asthma treatment, her inability to catch her breath persisted, and she had feelings of panic.

In retrospect, Kinga isn’t so sure she had asthma at all, believing she was misdiagnosed. In an interview with the Trauma and Mental Health Report, she explains:

“The doctors never knew what was wrong with me, probably because I didn’t have the right words to explain what was happening, and maybe because I wasn’t failing in school.”

Some mental illnesses, even those that are familiar, such as anxiety and depression, can be hard to identify. For youth with subtle to moderate symptoms, diagnosis can be especially difficult. Psychiatrist Peter Jenson and colleagues emphasize that diagnoses tend to rely on adults noticing symptoms. Children and teenagers often don’t have the knowledge to recognize their own mental-health difficulties.

As Kinga entered her pre-adolescent years, she always felt tired. Everything she did took a little more effort. While she continued her day-to-day activities, her symptoms followed her around. She says:

“I always performed well in school. I went out with friends, attended dance and language classes, but the fatigue was almost too much to bear. I had to fight the fogginess in my head to concentrate in school, and push myself through the exhaustion in dance class.”

Struggling pre-teens may not even realise that their mental health is at risk. They might only feel a little more tired or pessimistic. But these symptoms can hinder their ability to perform to their full potential.

Kinga also experienced other symptoms, like irritability:

“Sometimes, I would scream at my parents or siblings over the smallest things. My mom called it ‘being a teenager’, she didn’t realise, none of us realised, that it was more than that.”

Despondent and unable to get help, Kinga took matters into her own hands and researched her symptoms on the Internet. She recalls:

“I was so fed up with feeling like this. So I turned to Google. I searched ‘what is tiredness a symptom of?’ In my 16-year-old mind, that was all it was. I was just tired. I clicked on a link— ‘symptoms of depression.’ Other symptoms listed were feelings of hopelessness, negative thoughts, difficulty concentrating, feelings of numbness… I suddenly realised what must be going on.”

With this new information, she went back to her doctor.

“I finally had a name for these feelings. But for so long, I was doing too well for anyone to notice something was wrong. I suffered for years, believing that everyone felt like this—everyone felt a little out of breath, a little empty.”

A form of depression where people appear to function normally is called dysthymia, and it often begins in childhood. Although it may not be as debilitating as major depression, dysthymia can prevent positive feelings and interfere with daily tasks. On average, it lasts five years, does not usually resolve on its own, and requires treatment. About 75% of those with dysthymia develop severe forms of depression if left untreated.

While Kinga’s symptoms did not prevent her from continuing her usual activities, if she had not received help when she did, she may very well have developed a more serious mental illness.

In a post on Up Worthy, college student Amanda Leventhal shares a similar experience. Four years passed before she was diagnosed and treated. And Leventhal believes the process took so long because of stereotypes regarding mental illness:

“Even though we’re often told that mental illness comes in all shapes and sizes, I think we’re still stuck with certain ‘stock images’ of mental health in our heads.”

She says that ideas of how mental illness “should look” are so prevalent, it is difficult to believe that someone who doesn’t look mentally ill could be struggling. In fact, a study out of Duke University reports that only half of teenagers with mental health problems receive treatment at all.

Kinga says:

“I don’t know where I would be today if I didn’t get help. I don’t even want to think about that. I know I’m not the only one who suffered from mental illness as a kid, so I hope there is an increase in awareness of mental illness in young people.”

– Anika Rak, Contributing Writer, The Trauma and Mental Health Report

– Chief Editor: Robert T. Muller, The Trauma and Mental Health Report.

-Copyright Robert T. Muller

This article was originally published on Psychology Today

Ketamine Depression Treatment Poses Unknown Risks

November 4, 201800Decision-Making, Depression, Education, Featured news, Health, Psychopharmacology, Suicide November, 18

Source: SnaPsi at flickr, Creative Commons

New evidence that ketamine, an anesthetic medication, might be effective in treating depression is leading to increased research on the drug. What’s significant is the rapid relief in symptoms seen in some patients. After just one dose of ketamine, their depression can decline within three days, much quicker than with conventional anti-depressants.

This finding is particularly meaningful for people at risk for suicide. Ketamine may provide an option for physicians to quickly treat acutely suicidal patients by creating a window of opportunity to begin long-term behavioral and pharmacological therapies. If a patient’s symptoms are relieved even for a short time, it may be long enough to intervene.

Recent excitement also surfaced when researchers from New York’s Mount Sinai School of Medicine demonstrated the drug’s ability to alleviate treatment resistant depression (TRD). TRD occurs when feelings of intense sadness, loss of energy, and inability to experience pleasure persist even after multiple attempts at treatment. In the study, a shocking nine out of 10 patients with TRD experienced significantly reduced symptoms after their first dose of ketamine.

Despite this finding, questions remain about the drug’s long-term efficacy, as well as its side effects.

Anthony (name changed) has first-hand experience with ketamine to treat TRD. In a Reddit thread and interview with the Trauma and Mental Health Report, he explained that, prior to receiving ketamine treatment, he had tried numerous anti-depressants. After spending weeks or months on each drug to no avail, his doctor would switch him to a new drug in hopes of finding one that worked, but nothing did. Anthony began researching alternative treatments himself. He explained:

“When you try so many drugs—SSRIs, SNRIs, TCAS, antipsychotics, lithium, depakote—you are pretty open to anything that will help.”

He discovered ketamine and was enticed by the prospect of its therapeutic benefits:

“Before ketamine, I was in a hole. This was as depressed as I had ever been. I was suicidal. I called my mom and dad. They rescued me, letting me live in their basement. There, I began researching ketamine until I knew almost every study. I convinced my doctor to let me try it.”

But ketamine is only approved for use as an anesthetic by the U.S. Food and Drug Administration (FDA). This provision means that any patient who receives ketamine treatment for depression must have it prescribed as an “off-label” treatment. In other words, the doctor prescribes the drug for a non-FDA-approved use.

Choosing to participate in an unapproved treatment may expose a patient to more risks than they are aware of. FDA approval for ketamine use in anesthesia indicates that one time treatments are not harmful, but it is uncertain whether repeated treatments are safe. And, the long-term effects are not known.

Not surprisingly, the off-label prescription of ketamine has been criticized. A study by Melvyn Zhang at the Institute of Mental Health in Singapore and colleagues cited multiple problems with ketamine treatment for depression. A major criticism was that current information is based on inadequately short periods of observation. These observations indicate depression relapse rates as high as 73% one month after treatment ends.

Nevertheless, after deciding he was scared, but prepared to do anything to overcome his depression, Anthony began intravenous (IV) ketamine treatment in his doctor’s office:

“[When taking the drug] I feel completely disconnected from my body. I cannot move. I feel partly elated, and partly terrified. Reality becomes distant. I have no awareness of my body; only my mind exists. In this space, I can see my own struggle with depression. I recognize in this strange way that the depression isn’t real, not a part of me. I realize that I am surrounded by people who love me. Slowly, I come back to the chair I’m in, back to the doctor’s office. Somehow, I already feel better.”

After his initial treatment, Anthony said that his thoughts of suicide disappeared. He remembers feeling clear-headed, not high or euphoric. He felt normal again. This realization was so profound, he was moved to tears:

“After the initial five treatments, I was having moments when it felt like all my symptoms of depression were gone. But they would always eventually return. I was prescribed a nasal spray about a month after my last IV treatment. That worked for a while.”

Unfortunately, these benefits had serious contraindications. Anthony experienced lingering feelings of being disconnected from his body and from reality. Another study investigating ketamine use for TRD found that three out of 10 participants experienced dissociative symptoms from the drug.

These side effects have yet to be fully understood. Although Anthony believes that the treatment saved him, it also opened the door for other mental-health problems:

“Looking back, I would do it over again, as ketamine literally pulled me from suicidal thoughts. But, in my opinion, ketamine opened the door for the feelings of disconnection. And they are a huge struggle for me every day now.”

With alarmingly high post-treatment relapse rates, little knowledge of long-term safety, and worrisome side effects, ketamine has yet to be proven as a lasting treatment for depression.

– Stefano Costa, Contributing Writer. The Trauma and Mental Health Report

-Chief Editor: Robert T Muller, The Trauma and Mental Health Report

This article was originally published on Psychology Today

Prison Executioners Face Job-Related Trauma

October 12, 201800Decision-Making, Empathy, Featured news, Guilt, Law and Crime, Trauma October, 18

When an order of execution is issued by the courts in the United States, the prison warden or superintendent is responsible for the sentence being carried out—often by Corrections Officers (CO) who are unaware they will be tasked with killing a prisoner.

Complicating matters, human connections are frequently formed between guards and prisoners. According to Jerry Givens, who administered the death penalty in Virginia to 62 inmates over 25 years, COs may spend more time with death-row prisoners than with friends or family, and can develop empathy towards these inmates.

With potential bonds between death-row guards and prisoners in mind, a separate team of officers frequently conducts the actual execution. COs directly involved with the prisoners are often given smaller roles, such as walking the prisoners to the execution spot, or putting a hood over their head. This approach aims to reduce the emotionally damaging effects of executions on those in close contact with the inmates.

Authorities also try to disperse feelings of responsibility for the killing by having multiple guards involved in the execution process. With lethal injection, the method of execution used in most States, three COs are assigned to turn a key switch that releases the lethal drug into the prisoner. Only one “live” switch dispenses the fatal chemical. The CO initiating the procedure that ultimately kills the prisoner is not known.

Despite such measures, guards can feel mentally tortured by their participation in executions, both before and after.

As illustrated in Into the Abyss, a documentary detailing the death sentence of convicted killer Michael Perry, many execution guards experience post-traumatic stress disorder (PTSD). One guard explained his acute symptoms at the outset of his descent into PTSD. He began crying and shaking uncontrollably when “the eyes of all the inmates he had executed began flashing before him.” Another developed nightmares, cold sweats, and sleeplessness.

Other guards, like Givens, have reported depression, inability to sustain relationships, and changes in personality. According to Rachel MacNair, author of Perpetration-Induced Traumatic Stress: The Psychological Consequences of Killing:

“The inner lives of guards who execute become like those of battlefield veterans who suppress memories from themselves and others.”

In 2007, two South Carolina COs who developed obsessive compulsive behaviour, nightmares, and other emotional disturbances filed civil lawsuits, claiming that their conditions resulted from performing executions. The COs alleged that they were coerced into carrying out executions and were not given any debriefing or counseling to help them deal with the emotional effects.

For some guards who need psychological treatment, it is simply not available. Other times, guards do not use available psychological help for fear of bei

Source: Feature: Fumigraphik at flickr, Creative Commons

ng labelled ‘weak’ by their colleagues. Additionally, guards may not have the opportunity to talk about their involvement in executions with members of their families. Givens explained:

“When I accepted the job, I never told my wife or kids or anybody. I didn’t want them to go through anything I had to go through. If I told someone, they would tell someone. It would have been like a snowball and gotten bigger and bigger and everyone would know exactly what I was doing.”

This secrecy protects guards from having to explain or defend their actions. But it also prevents them from obtaining help to lessen the ill-effects of the associated trauma. Lack of disclosure precludes obtaining support.

The unacknowledged stress experienced by guards on execution teams risks dangerous mental-health consequences. As Givens, who now campaigns to end the death penalty, put it:

“It’s not an easy task to do. If I had known what I had to go through as an executioner, I wouldn’t have done it. You can’t tell me I can take the life of people and go home and be normal.”

– Veerpal Bambrah, Contributing Writer. The Trauma and Mental Health Report.

-Chief Editor: Robert T. Muller, The Trauma and Mental Health Report.

This article was originally published on Psychology Today

Should Those with Mental Illness Have the Right to Die?

September 13, 201800Chronic Pain, Decision-Making, Featured news, Health, Resilience, Suicide September, 18

Source: KingaBritschgi at DeviantArt/Creative Commons

On June 17, 2016, Canada joined a handful of countries and several U.S. states in enacting assisted suicide legislation. Medical Assistance in Dying (MAID), also known as euthanasia, was passed into Canadian law as Bill C-14 in an effort to provide relief from unbearable suffering to those whose death is reasonably foreseeable.

Although having the choice to die brings relief to many individuals and their families, Bill C-14 does not cover those who wish to end their life due to an unendurable mental illness.

Being denied a legal right to assisted death for significant mental illness was the plight of 27-year-old Adam Maier-Clayton. Since childhood, Maier-Clayton suffered from unrelenting psychological disorders that robbed him of sustaining a reasonable quality of life. In an essay published in The Globe and Mail, he detailed the unrelenting pain his psychological disorder caused him:

“I’m not suicidal in the sense that I hate myself and I want to leave. I think this world is beautiful, but this amount of pain is intolerable… Some people are confined to lives of truly horrifying amounts of suffering that no amount of treatment can stop.”

Maier-Clayton lobbied the Canadian federal government to change the criteria that would allow people with severe mental illness to qualify for medical assistance in dying. His bid was not successful. Sadly, in April 2017, he took his own life.

Currently, the law in Canada excludes access to MAID for people suffering from psychological issues alone. For right-to-die supporter, author, and journalist Sandra Martin, this position is disrespectful to the severely mentally ill. In an article written for The Globe and Mail, Martin argued for what she believes is the best interest of the patient:

“We can’t leave it to vote-wary politicians and risk-averse medical associations to campaign for an equitable MAID law….We can’t wait for another constitutional challenge to recognize that not all suffering is physical. That struggle is Maier-Clayton’s legacy—and fighting for it might make a difference to you or somebody you love.”

Not having an available, safe, and medically supervised solution to dying does not prevent death. According to Dying With Dignity Canada, the absence of a legal and feasible option pushes individuals into making agonizing and expensive decisions. They must either take their own life or travel abroad to countries where assisted suicide is legal.

Despite the pressure to change MAID, lawmakers are taking a cautious approach to considering future regulation on right-to-die policies involving psychological disorders. Many mental health professionals and organizations meet this unhurried approach favourably, as they feel it is necessary to protect potentially vulnerable members of society who may recover.

The Centre for Addiction and Mental Health (CAMH) supports the Canadian government’s decision to painstakingly consider the implications of MAID for psychiatric patients. CAMH stated:

“CAMH recognizes that people with mental illness can experience intolerable psychological suffering as a result of their illness, but there is always the hope of recovery. In those rare cases where a mental illness may be determined to be irremediable, safeguards must be in place to make sure that an individual truly has the capacity to consent to MAID.”

On February 8, 2017, in a panel discussion jointly hosted by the University of Toronto Faculty of Law and CAMH, mental health professionals converged to dissect this multifaceted debate. In addition to the vast legal issues, they discussed the enormous ethical dilemmas inherent in right-to-die policies. Panel member Scott Kim, Senior Investigator at the National Institute of Health, summarized some of the ethical, moral, and legal issues at play, and cautioned against enacting policy without the appropriate research on euthanasia available. Kim emphasized the risk of human error in the medical profession in making this type of decision:

“Euthanasia is permanent….Even the most sophisticated psychiatrist does not have too much data to go on except their own experience and impressions to make these prognostic determinations.”

Kim goes on to point out that wanting to die is often part of the mental illness manifestation itself, and with correct and consistent treatment, the desire to end one’s life may abate.

MAID currently requires a medical practitioner to support a patient’s resolve to die. The magnitude of such a permanent decision lies not only with the patient, but also with the medical professional. In an occupation that is obligated to ‘do no harm’, supporting the death of someone with a non-terminal illness, despite an intolerable life, appears contradictory.

Tarek Rajii, panel member and Chief of Geriatric Psychiatry at CAMH, has worked with patients that he knows may never recover. However, based on the current research available, Rajii remains hesitant about MAID for mental illness:

“We don’t know who will die suffering. We don’t know how to identify that person….If we are considering MAID as a form of treatment intervention, when there is very limited evidence, as a medical profession, do we introduce an intervention without enough evidence, that we don’t [fully] understand?”

With making the decision to end a life of psychological suffering, mistakes are not an option. There is no room for error; there is no reversal. And yet, how much suffering can one person endure? Ultimately, we are left with the realization that, despite the pain from devastating mental illness, hope for recovery cannot be ruled out.

– Kimberley Moore, Contributing Writer, “The Trauma and Mental Health Report”

“-Chief Editor: Robert T. Muller, The trauma and Mental Health Report”

This article was originally published on Psychology Today

Talking about Death May Prevent End-Of-Life Suffering

December 21, 201780Anxiety, Decision-Making, Featured news, Grief, Health, Psychopathy December, 17

Source: Marica Villeneuve, Trauma and Mental Health Report artist, used with permission

Death comes unexpectedly. As City University of New York professor Massimo Pigliuccionce said, “You can evade taxes. But so far, you can’t evade death.” Just what is it, though, that we are trying to evade?

“We don’t know how or when we will die – even as we are actually dying,” wrote Joan Halifax, medical anthropologist and Zen teacher. “Death, in all its aspects, is a mystery.”

But we can talk. In conversation, we are able to clarify our wishes for end-of-life care, express our fear of the unknown, and grieve the loss of a loved one.

The “Death Café”, or “café mortel”, is a movement in which strangers meet to talk about death over tea and cake. The first “café mortel” was hosted in 2004 by Swiss sociologist and anthropologist Bernard Crettaz. In 2011, the movement migrated to the UK and took on the name “Death Café”. Their website states:

“Our aim is to increase awareness of death to help people make the most of their (finite) lives.”

In an article for Aeon magazine, freelance essayist Clare Davies described the kinds of topics explored at Death Café:

“The guests take turns to voice their thoughts and feelings across a wide range of subjects. How does it feel to lose a parent? What is existence? What matters most to us in life? The point is to talk. What is death like? What exactly are we afraid of? To what degree do our ideas on death influence how we live?”

But death isn’t an easy topic… even some doctors avoid it.

A 2015 study led by Vyjeyanthi Periyakoli at the Stanford University School of Medicine found that 86% of 1040 doctors said that they find it “very challenging” to talk to patients about death.

Yet, conversations that explore patient values are essential to end-of-life care. Many prefer to forgo aggressive treatments that are unlikely to prolong life, or improve its quality. Conversations ensure that patients are protected from unwanted treatments and excessive rescue measures that may lead to distress.

End-of-life distress can take many forms. Medications and surgeries often leave the body frail and vulnerable to other illnesses, or dependent on a ventilator or intravenous nutrition.

In a 2010 New Yorker article entitled “Letting Go”, medical doctor and public health researcher Atul Gawande wrote:

“Spending one’s final days in an intensive care unit because of terminal illness is for most people a kind of failure. You lie on a ventilator, your every organ shutting down, your mind teetering on delirium and permanently beyond realizing that you will never leave this borrowed, fluorescent place.”

End-of-life decisions can be stressful for both the patient and doctor. But talking about them does help.

In the New Yorker article, Gawande describes a 2008 Coping with Cancer study in which only one third of patients reported talking with their doctors about goals for end-of-life care, even though they were, on average, four months from death. Those who did have end-of-life conversations were significantly less likely to undergo cardiopulmonary resuscitation, be put on a ventilator, or end up in an intensive care unit. Gawande wrote:

“These patients suffered less, were physically more capable, and were better able, for a longer period, to interact with others. In other words, people who had substantive discussions with their doctor about their end-of-life preferences were far more likely to die at peace and in control of their situation, and to spare their family anguish.”

Audrey Pellicano hosts the New York Death Café, and works as a grief counsellor. She told the New York Times:

“Death and grief are topics avoided at all costs in our society. If we talk about them, maybe we won’t fear them as much.”

This sentiment is echoed by palliative care specialist Susan Block, who was interviewed by Gawande for the New Yorker article. Regarding end-of-life conversations, she said:

“A large part of the task is helping people negotiate the overwhelming anxiety—anxiety about death, anxiety about suffering, anxiety about loved ones, anxiety about finances.”

Fear surrounding life’s end is immense and varied. But death comes regardless. Perhaps what is needed is an ideological shift, supported by movements like the Death Café, which provides opportunities for people to discuss death from a safe distance. By facing death, a greater appreciation of life’s preciousness may emerge, clarifying what we want most from both living and dying.

–Rebecca Abavi, Contributing Writer, The Trauma and Mental Health Report.

–Chief Editor: Robert T. Muller, The Trauma and Mental Health Report.

This article was originally published on Psychology Today

Talking About Death May Prevent End-Of-Life Suffering

December 21, 201700Anxiety, Decision-Making, Featured news, Grief, Health, Psychopathy December, 17

Source: Marica Villeneuve, Trauma and Mental Health Report artist, used with permission

“We don’t know how or when we will die – even as we are actually dying,” wrote Joan Halifax, medical anthropologist and Zen teacher. “Death, in all its aspects, is a mystery.”

But we can talk. In conversation, we are able to clarify our wishes for end-of-life care, express our fear of the unknown, and grieve the loss of a loved one.

“Our aim is to increase awareness of death to help people make the most of their (finite) lives.”

In an article for Aeon, freelance essayist Clare Davies described the kinds of topics explored at Death Café:

“The guests take turns to voice their thoughts and feelings across a wide range of subjects. How does it feel to lose a parent? What is existence? What matters most to us in life? The point is to talk. What is death like? What exactly are we afraid of? To what degree do our ideas on death influence how we live?”

But death isn’t an easy topic… even some doctors avoid it.

A 2015 study led by Vyjeyanthi Periyakoli at the Stanford University School of Medicine found that 86 percent of 1040 doctors said that they find it “very challenging” to talk to patients about death.

End-of-life distress can take many forms. Medications and surgeries often leave the body frail and vulnerable to other illnesses, or dependent on a ventilator or intravenous nutrition.

In a 2010 New Yorker article entitled “Letting Go”, medical doctor and public health researcher Atul Gawande wrote:

End-of-life decisions can be stressful for both the patient and doctor. But talking about them does help.

In the New Yorker article, Gawande describes a 2008 Coping with Cancer study in which only one-third of patients reported talking with their doctors about goals for end-of-life care, even though they were, on average, four months from death. Those who did have end-of-life conversations were significantly less likely to undergo cardiopulmonary resuscitation, be put on a ventilator, or end up in an intensive care unit. Gawande wrote:

Audrey Pellicano hosts the New York Death Café, and works as a grief counsellor. She told the New York Times:

“Death and grief are topics avoided at all costs in our society. If we talk about them, maybe we won’t fear them as much.”

This sentiment is echoed by palliative care specialist Susan Block, who was interviewed by Gawande for the New Yorker article. Regarding end-of-life conversations, she said:

“A large part of the task is helping people negotiate the overwhelming anxiety—anxiety about death, anxiety about suffering, anxiety about loved ones, anxiety about finances.”

–Rebecca Abavi, Contributing Writer, The Trauma and Mental Health Report.

–Chief Editor: Robert T. Muller, The Trauma and Mental Health Report.

This article was originally published on Psychology Today

3 When adolescents claim the right...-de9954d24af18995b17b05ebb4d8e7f8b35ed6a1

When Adolescents Claim the Right to Refuse Treatment

April 21, 201620Child Development, Decision-Making, Family Dynamics, Featured news, Parenting, Therapy April, 16

Source: UnitedNotions Film, Used with permission

In a personal essay in the Hartford Courant, 17-year old Cassandra C. recalls her legal battle when she refused to undergo chemotherapy after being diagnosed with Hodgkin Lymphoma, a cancer of the lymphatic system.

The Connecticut Superior Court ruled that as a minor, Cassandra did not understand the severity of her condition. She was taken to Connecticut Children’s Medical Center in Hartford, where she was forced to undergo chemotherapy.

In her essay, Cassandra wrote:

“I should have had the right to say no, but I didn’t. I was strapped to a bed by my wrists and ankles and sedated. I woke up in the recovery room with a port surgically placed in my chest. I was outraged and felt completely violated.”

When Cassandra’s mother did not bring her to medical appointments, the Department of Children and Families took Cassandra into custody. She was medically examined and placed into foster care.

A month later, Cassandra was allowed to return home once she agreed to continue chemotherapy. After reluctantly undergoing two days of treatment, Cassandra claimed that it was beginning to take a toll. Feeling trapped, she decided to run away to evade treatment, only returning home out of fear her disappearance would land her mother in jail.

It is common for cancer patients to experience adverse side effects while undergoing chemotherapy. In addition to physical side effects, patients often experience a range of psychopathologies, including depression, fear, anxiety, and hopelessness.

In court, Cassandra argued that she cared more about the quality of her life than the duration. Yet she was told that undergoing chemotherapy would increase her chance of survival by 85 percent. Without it, doctors said there would be a near certainty of death within two years. Although Cassandra acknowledged this risk, she maintained that she had the right to make decisions about her own life and body.

In an interview with the New York Times, Cassandra’s mother supported her daughter’s decision to refuse chemotherapy:

“She knows the long-term effects of having chemo, what it does to your organs, what it does to your body. She may not be able to have children after this because it affects everything in your body, it not only kills cancer, it kills everything in your body.”

Both Cassandra and her mother denied that Cassandra’s decision was anyone’s but her own. But there is some concern that Cassandra’s opinion on medical treatment could have been influenced by her parents. This issue is especially important given the far greater chance of survival offered by treatment.

A study by psychiatrist Paola Carbone in the Journal of Child Psychotherapy describes how young cancer patients may have trouble accepting treatment because of its severe effects on their developing bodies. Adolescent girls often express dissatisfaction with their bodies and lower self-esteem. The side effects of chemotherapy, such as weight loss, may negatively affect their fragile self-confidence.

The right to independent decision-making at this age is also a factor. In her essay, Cassandra writes:

“I am a human—I should be able to decide if I do or don’t want chemotherapy, whether I live 17 years or 100 years should not be anyone’s choice but mine.”

Researchers, Coralie Wilson and Frank Deane, suggest that it is important to teach adolescents’ that part of being more independent and autonomous is being aware of when and how to seek the support of others.

An extreme need for independence can result in self-imposed isolation, which is why Carbone maintains that adolescents are particularly in need of familial support. Other studies have also found that family involvement in discussions about the side effects of chemotherapy improves social support and decision making, lowers physical and mental distress, and increases emotional wellbeing.

Carbone explains:

“Chemotherapy refusal by adolescent patients should not be considered an obstacle to be eliminated at all costs, but rather a message to be welcomed and worked on.”

Cassandra was discharged from hospital last April, after completing treatment. Prior to being released, she wrote on Facebook, “I have less than 48 hours left in this hospital and I couldn’t be happier!”

She reported that she was grateful that she responded positively to the drugs and was predicted to survive cancer-free. But she also added:

“I stood up and fought for my rights, and I don’t regret it.”

– Khadija Bint Misbah, Contributing Writer, The Trauma and Mental Health Report

– Chief Editor: Robert T. Muller, The Trauma and Mental Health Report

This article was originally published on Psychology Today

Category: Decision-Making