Category: Decision-Making

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Talking about Death May Prevent End-Of-Life Suffering

60Anxiety, 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. MullerThe Trauma and Mental Health Report.

Copyright Robert T. Muller.

This article was originally published on Psychology Today

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When Adolescents Claim the Right to Refuse Treatment

00Child 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

Copyright Robert T. Muller

This article was originally published on Psychology Today