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Disassociating Death from the Grim Reaper

by Nadine Persaud, BSW, MSW, RSW, PhD Candidate

We live in a society where death is very taboo and it usually is a topic of discussion that only occurs when you are faced with death itself. I personally have been working in the Palliative Care field for 11 years and whenever I am asked what I do for a living, there is usually a long awkward pause after I say that I work with the dying. I am either looked at as if I have a halo over my head or as the grim reaper. Many people do not understand why anyone would ever want to work with someone who is dying. When I explain how rewarding it is to meet a complete stranger at the most vulnerable time in their life and be a part of their end-of-life journey, many respond by saying “I could never do that”. That often makes me think why not. We all live in a world where death is inevitable and we will all face this journey whether we like it or not.

 

When I think about World Hospice Palliative Care Day and the theme of “Universal Health Coverage and Palliative Care-Don’t leave those suffering behind”, it brings immense pride to me knowing that there is a focus on universal palliative care. One of the aims of this day is to raise awareness and understanding of the four domains upon which palliative care is built, the medical, psychosocial, practical and spiritual. When I think of one word that ties all of these domains together, I think of the four-letter word, HOPE. There have been a few times when I have spoken about maintaining hope during an end-of-life journey and have been asked, how can you have hope when someone is dying. I have contemplated this question often and at times, my own hope has wavered. However, when I think about all of the unique individuals and their families that I have had the honour of supporting, I respond by saying, hope changes. Your hope for your loved one may be different than the hope that you have for them tomorrow. I supported a three year old who was living with an inoperable glioblastoma. When first diagnosed, his mother’s hope was that one of the clinical trials would work and her son would go into remission. A few months after, we realized these trails were not working and her hope changed. Her hope was now that her son would be able to eat and enjoy a peanut butter and jelly sandwich without experiencing nausea. That young boy died at home, surrounded by his family and spent his last days playing his favorite video game. I tell this story because I believe that it perfectly illustrates the multidimensional aspects of the word hope and how important it is to understand hope is forever evolving at the end-of-life. When we understand hope, we are able to better address such concepts as anticipatory grief and as this story demonstrates, a move towards acceptance.  Yes, the people that we work with are dying but no they do not have to lose hope. There is such beauty in the word and the individuality of what hope truly means.

 

I was recently asked to define palliative care in one short sentence, and I very quickly responded by saying; palliative care supports individuals with life-limiting illnesses to live well until they die. I strongly believe that living and dying go hand-in-hand. When we are able to view death in this way, we are able to grieve and better celebrate lives. The depiction of death in the media is mostly associated with fictional characters such as the grim-reaper. I often look at these depictions and wonder, when will this change. When will our death-denying society make a shift to becoming more accepting of the one journey that we all have in common. When will we live in a society where the death process is celebrated the same way we celebrate birth. When will we live in a society where words such as loss, gone and passed away are replaced with the word died.

 

When I think of palliative care, I think of hope. I think of meaning. I think of purpose. I think of resilience. And most importantly, I think of life. We all have a duty and that duty is to help breakdown all of the myths associated with death. We all have the opportunity to improve the provision of palliative care not only within our society but also around the world. We have exceptional palliative care services in parts of the world and not so much in other parts of the world. Our job is to band together and create a world where there is equity within our palliative care system. I challenge as many people as possible to use their voices as their biggest asset and speak out about palliative care and about hospice care and what we can do as a collaborate group to change the way in which death is viewed. Death is difficult, death is hard, death is permanent but death is also a legacy of a life lived. It is our job to celebrate that life and carry on the legacy of those we love and care for.

 

 


 

Nadine Persaud is currently the Director of Client Services at the Kensington Health Centre. Nadine has been working in the palliative care field for the past 11 years and specializes in both hospice and palliative care. Nadine is also a trainer for the Core Concepts Hospice Palliative Training for three of the hospices in Toronto and has been a facilitator at the University of Toronto Centre for Interprofessional Education in Palliative Care. She also sits on the Accreditation review panel for Hospice Palliative Care Ontario. Nadine received her Bachelor of Social Work and minor in Psychology at Ryerson University, a Master of Social Work at York University and is currently completing her PhD in Palliative Care through Lancaster University in England. Her research interests include the concept of resilience in palliative, the methods in which the provision of palliative care can be improved at a community, provincial and national level and the supports that are available to adolescents and young adults living with advanced cancer at the end-of-life.

 


Small Steps, Shattered Hearts and Mountaintops

pattaylorrecentby Pat Taylor, CKN Editor

 

“Small, slow steps. Don’t stride. Don’t rush. If you rush, you’ll fall, or burn out. Either one could kill you. Take small, slow steps. Small, slow steps and you will get there.” It’s Valentine’s Day, and my brother’s words repeat over and over in my mind like a record skipping, as I climb the snowy hillside above our ranch with freezing feet and shattered heart.

 

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Redefining Christmas After Loss

debswilkinsonby Debs Wilkinson, Bereaved Wife

 

As we are approaching mid-December and the festive season is in full swing, I’m constantly reminded about my late husband Peter. Christmas to me was Peter. He adored every single aspect of the Christmas season from decorating the tree, to planning/cooking the gorgeous feast, he even wore Christmas jumpers before they came back in fashion!

 

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Death and Life

danduffyby Dan Duffy

 

The drive was quiet, tense. My friend Richard didn’t speak, the silence broken only from the rattling of my lighting kit. We probably didn’t need it.

Two days prior, the first words from his phone call were, “Dude, can I borrow your camera?”

We’re thirty year friends, and while I love him, he does not have the best track record with “borrowing my things.” Once, he borrowed my car. It ended poorly.

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Moving On, Carrying On: Reframing Loss Without Erasing It

pattaylormovingonby Pat Taylor, CKN Editor

Originally published on The Huffington Post
The email flashes across my screen in bold, black type: “B got married on the weekend. So… how are you doing?”

 

How am I doing? My initial response is: “Fine. Happy for him. I wish him wellness and joy!” But then, my face cracks and suddenly I can barely breathe.

 

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Talking to your Child about Death and More

TrishaPaulby Trisha Paul, CKN Advisory Board Member

 

“What is cancer?”
“Something you can die from,” an adolescent in remission once told me.

 

He later described his treatment to me, saying, “if it weren’t for the treatment, I would’ve been….” His voice trailed off as he swiped a finger across his neck and made a krrr sound. “It’s true,” he concluded, nodding.

 

This teen, in this moment, chose to express himself outside of words. He had been comfortable defining cancer explicitly in relation to “death” before, so why did his words falter now? I remember being taken aback by this symbolic beheading, an action fraught with connotations of cancer as both violent but also punitive. I wondered how many other children associated cancer with death, how many felt as though they were receiving a death sentence when diagnosed.

 

 

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