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Writer's pictureCarolyn Dillon

Addressing Systemic Gaps with Death Doulas in Opioid Crisis and End-of-life Matters 

As a bartender at a local neighbourhood pub in the early 2000s, I had a bird's eye view of the opioid crisis as it began to take root. My then-boyfriend (now husband) and I watched from his seventh-floor balcony as people lined up outside the walk-in clinic next door to the pub.

One of the doctors carelessly wrote and refilled prescriptions for Oxycontin ("Oxys") of varying strengths. The pharmacy behind the walk-in clinic filled them as people gathered in the parking lot, trading pills and selling their excess. It was a curious site, and I had no idea how serious the issue was or would soon become. Now, more than ever, we need your support. Home Hospice Association (HHA) is doing crucial work in providing end-of-life care and support for those affected by addiction, and your contribution can make a significant difference. 

   

In a study on regulatory data, Pappin and colleagues (2022) conclude that none of the trials sponsored by Purdue Pharma (OxyContin's manufacturer) assessed extended-release OxyContin's risk for misuse or addiction, nor did they prove its effectiveness for treating moderate, chronic pain. However, Health Canada approved its use for non-cancerous, moderate chronic pain, with its product monograph recommending increased dosage (instead of more frequent administration) if patients did not achieve pain relief for the full 12 hours. Moreover, OxyContin's monograph did not indicate a maximum dosage, allowing prescriptions with no upper dose limit.

   

The abuse potential for OxyContin (Oxy) stemmed from its slow-release formula, which, when chewed, crushed, snorted or injected, led to 12 hours of medication, a potentially lethal dose, being released all at once. Still, Purdue Pharma Canada aggressively marketed the pills using misleading claims, making several pub patrons a perfect target. 

 

At first, we noticed patrons' not-so-subtle attempts at discreetly sharing, selling, purchasing, and trading pills. Eventually, their behaviour became more volatile as dosages increased and addiction set in. As a bartender, I was used to managing challenging behaviours, but this was new. They were sober one minute and heavily intoxicated the next. Still, we were responsible for their safety despite having nothing to do with their state. Besides, they were like family. 

 

We helplessly watched as lives fell apart. Homes were lost, families destroyed, and people died at an increasing rate. One gentleman shared that he was prescribed Oxys for a sprained ankle. He suggested his girlfriend take one for back pain one night. Before they knew it, they were spending about $4000 a month on opioid-based drugs to feed their relentless cravings and withdrawal symptoms. 

  

In 2012, Purdue Pharma Canada stopped manufacturing OxyContin, replacing it with OxyNEO (as they had in the US two years before). I recall hearing something about the new tamper-proof formula. The problem? Prohibition has never successfully eliminated addiction, and individuals who'd already developed an extreme tolerance to oxycodone through misuse of its extended-release formula sought alternative drugs.

   

Those with connections or a doctor still willing to prescribe opioid-based meds for chronic pain switched to "hydromorphs," or Hydromorph Contin, another high-dose extended-release pill made by Purdue. Toronto addiction specialist Meldon Kayhan spoke out about Purdue hypocrisy in promoting OxyNEO's safety profile while continuing to promote sales of Hydromorph Contin, with its "dangerously high formulations" for a non-tamper-resistant drug (as cited in Howlett, 2015). 

   

Purdue Pharma's greedy and misleading sales tactics led to a significant public health crisis across North America. The demand for opioid medications was high when, around 2013, fentanyl, an opioid 50 to 100 times more potent than morphine, began selling as heroin across the US and into Canada, most illegally made in Mexico or China (Miller, 2018, p.4). This shift caused a significant increase in opioid-related deaths due to its high potency and challenges in controlling its distribution. The impact on our community was devastating, with lives lost and families torn apart.

  

A few patrons turned to heroin, some others turned to meth, a relatively inexpensive yet highly addictive synthetic stimulant known to cause anxiety, agitation, paranoia, increased heart rate and respiration, and in high doses, death. As Kori Jane, a brilliant young poet, shares, people are often addicted to escaping, not the substance, per se. After six drug-related deaths in our parking lot (not all patrons) in less than a month, I reduced my shifts and went back to school.  

 

While working on a BA in psychology at UWO, I learned there is a strong correlation between substance use disorder and trauma. OK, full disclosure: the truth is I already knew that having battled out-of-control substance use myself from the age of 12 to almost 40. I was a broken mess when I first walked into that neighbourhood pub. The patrons and staff were kind and caring, like a family I'd never had. Their support was life-changing, inspiring me to heal and transform my life. Soon after, I got a job as their bartender, supporting them instead. Thankfully, the drugs available in my younger years weren't nearly as addictive, and the first time I tried an opioid-based pill, it made me quite sick. 

    

The Covid-19 pandemic further aggravated the ongoing drug crisis, as evidenced by the graph below. The Public Health Agency of Canada (PHAC) suggests the staggering jump in opioid deaths stemmed from a combination of changes to the (illegal) drug supply, increased substance use to cope with stress, and few available supports and services for those using drugs (Health Canada, 2024). Increased isolation likely played a role, too.  

Non-pharmaceutical grade fentanyl and carfentanil now pose a serious public health risk, sold as heroin, mixed with cocaine, and used to lace pot. As humans, we have a long history of drug experimentation, especially in our teens and early adulthood, when coping skills are low, and anxiety is high. Young people often think they're invincible, failing to take potential consequences seriously.   

When I think back to my earlier years, I made many bad decisions, doing whatever I could to escape my own mind. I drank all sorts of alcohol, smoked lots of pot, dropped acid, quaaludes, and whatever else I could. Nowadays, those same mistakes can lead to relentless addiction or, even worse, death. Still, rather than blaming big pharma greed or failures in policy, we continue to point fingers, blaming 'the addict' for being lazy, having no willpower, and being a drain on society. This stigma leads to increasing self-blame, shame, and guilt, further isolating the affected individual, who most often feels hopeless. It's crucial to understand that addiction is a complex issue, and stigma only serves to worsen the crisis. 

 

Grief from death and non-death-related loss accumulate across the lifespan, devastating those with little or no support. Loved ones are frustrated by systemic failures, as options for drug rehabilitation are insufficient, and adequate follow-up is even worse. Ambiguous grief hangs heavy as they wonder if their friend, spouse or child will live another day or become another statistic in our country's drug epidemic. 

 

When my husband and I took on our two young granddaughters full-time four years ago, I joined the CANGRANDS kinship national support Facebook group. Most members are raising little ones because the parents are in active addiction or dead. While the children are a blessing, many are born addicted, or they're neglected and abused; either way, brain development is altered, causing significant delays and behavioural problems. It takes much patience to manage the outbursts and special needs, plus good advocacy skills to navigate the healthcare and educational systems. 

  

The stories are heartbreaking, and caregivers, usually grandparents, have little support and are often battling their own health problems. Many have lost loved ones, including grandchildren exposed to a parent's fentanyl abuse. Still, they sit alone in their grief as the stigmatized deaths go largely unnoticed or unacknowledged. Rap artist Chanda Lynn dedicated her song Tired Eyes to the group as a testament to their tireless efforts and underlying sadness, having been raised by her grandmother, too. Responding to the needs of grandparents impacted by addiction and drug-related death, HHA is planning a new initiative to support this vulnerable population this coming year.  


What about those struggling with substance abuse and watching their friends die? Who supports their grief? I recall a patron who was the only survivor after he and his long-time girlfriend joined another couple to get high on fentanyl. There was little sympathy and much blame. He was a gentle but tormented soul and died of cancer a year and a half later. I'm unsure if he ever found peace.   

What about those terminally ill while homeless or living rough and in active addiction? Who holds their hand as their health further deteriorates? Who helps them find meaning, forgiveness, and peace? Do doctors and nurses respect their dignity and treat them with compassion, or do they judge their compulsive drug use as a weakness or a personal choice? Sadly, from what I have witnessed, it's often the latter. 

 

As an End-of-Life Doula candidate with the Home Hospice Association (HHA), I had the privilege of meeting with co-founder and CEO Tracey Robertson to discuss my goals, interests, and experience. She spoke about HHA's work with vulnerable populations, inviting me to consider joining their working group on mental health and addiction. The prospect of contributing to this vital cause filled me with enthusiasm. I soon realized the significant impact HHA could make in closing several gaps in the system. By reducing stigma through education and supporting the dying and bereaved impacted by addiction, we can bring hope and optimism to those in need. 

 

On November 21, 2024, during HHA's Addictions and Mental Health Education Month, I will host a panel discussion, When There Are No Words, providing a unique learning opportunity for those who have experienced a drug-related death and audience members interested in learning how to support individuals in similar situations. Panelists will share their experiences and discuss helpful and unhelpful forms of support, including comments they found comforting and those they did not. The stigma surrounding drug-related deaths creates discomfort, so people don't know what to say, further alienating loved ones and leaving them to manage their grief alone. Through open and honest conversation, we foster a more understanding and empathetic approach to supporting one another. 

 

Our current initiative is a response to a pressing issue affecting men and anyone identifying as male. Shockingly, seventy-two percent of accidental opioid-related deaths occur in males (Government of Canada, 2024).  Several factors influence this alarming statistic, including a reluctance in men to seek help. Even when they do, they often find little available support, as 'many social policy interventions, including some of the most touted, don't help boys and men' (Reeves, 2022, p.xiii).  


Richard Reeves, Policy Director for the Center on Children and Families at Brookings Institution, writes, "What is needed is a positive vision of masculinity that is compatible with gender equality" (2022, p. xiv). The women's movement has been crucial in ensuring more choice and opportunity for women. However, comments like "A woman needs a man like a fish needs a bicycle," made by Irina Dunna and popularized by Gloria Steinem, put men in a precarious place.   

While most men's fathers and grandfathers had clear roles involving wives, work, and kids, the economic relationship between men and women has shifted so quickly that our culture has failed to catch up (Reeves, p.36). Men often feel unwanted, unneeded, and unsure of their place. What good is a bicycle in a world of fish? Between a lack of support and unclear direction, men's addiction and suicide rates are skyrocketing. 

  

How does HHA fund their outreach initiatives? The Moonlit Memory Walk is HHA's annual fundraiser; your support is crucial. It brings people and communities together to commemorate their loved ones who have died. This year, the event falls on Thursday, October 17. All proceeds raised directly benefit HHA, the only Canadian registered charity dedicated to ensuring access to compassionate end-of-life care and support for anyone, at any time, of any age, under any roof.  

 

Participants joining the Moonlit Memory Walk fundraising event are either walking in memory of a loved one, as part of a team walking for a person or cause close to their heart or helping create a loved one's legacy. We are honoured to have a team walking this year to support our efforts in ensuring those affected by addiction have dignity, compassion and culturally sensitive human connection at the end of life and within each of the Death Doula's domains of care, including deathcare planning, vigils, legacy work, and grief support. 

 


References

Government of Canada. (2024, June). Opioid- and stimulant-related harms — Canada.ca. Health Infobase - Health data in Canada - Canada.ca. Retrieved August 7, 2024, from https://health-infobase.canada.ca/substance-related-harms/opioids-stimulants/


Health Canada. (2024, June 28). Modelling opioid-related deaths during the overdose crisis. Canada.ca. https://www.canada.ca/en/health-canada/services/opioids/data-surveillance-research/modelling.html


Howlett, K. (2015, August 18). Number of opioid drug prescriptions in Canada skyrocketing. The Globe and Mail. https://www.theglobeandmail.com/news/national/sales-of-opiod-drug-prescriptionsskyrocketing/article26008639/#


Millar, A. (2018, February 27). Fentanyl: Where did it all go wrong? Pharmaceutical Technology. https://www.pharmaceutical-technology.com/features/fentanyl-go-wrong/?cf-view


Pappin, J., Bavli, I., & Herder, M. (2022). On what basis did Health Canada approve OxyContin in 1996? A retrospective analysis of regulatory data. Clinical Trials, 19(5), 584-590. https://doi.org/10.1177/17407745221108436


Reeves, R. V. (2022). Of boys and men: Why the modern male is struggling, why it matters, and what to do about it. Brookings Institution Press. 


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Carolyn Dillon is an HHA Death Doula Candidate with a BA in psychology and an MSc in thanatology. She specializes in death education and provides grief and trauma support and end-of-life care planning in her home community, St. Mary's, Ontario. 

 


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