by Marjorie McGibbon, RN BScN,Paediatric Oncology Patient Navigator
When you read the words Palliative Care, what did you think of? For many years of my life, and even my nursing career, I thought of death. And, it might still mean that to you. But I want to share with you some thoughts to help you understand that it can mean so much more to all of us, and that there is a certain peace in acceptance of what it ultimately leads to: End Of Life (EOL) care. Years ago, and even recently, the palliative care team was associated with negative connotations: “death squad,” “doom troops,” the list goes on. Now, we are seeing a shift to a new approach and greater understanding of what these special caregivers can offer their patients, at any age and any stage of disease.
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.
“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.
by Sue McKechnie, CKN Childhood Cancer Co-editor, Bereaved Parent
It’s a decision that you never thought you would have to make. A decision that most people cannot imagine. The unfortunate reality of childhood cancer is that not all children will survive.
When we were told there was no treatment options left for Shawn and that the tumour in his brain would eventually take his life, we were faced with the decision of whether he would spend his last days in the hospital, in a hospice centre or at home.
I recently came across a paper written by Dr. Jessica Zitter in the Journal of Palliative Medicine, where she proposes creating a new society, the American Society for Patient Centered Physicians (ASPCP). “Its purpose would be to bring together physicians of all specialties whose treatment philosophy prioritizes patient-specific rather than specialty-specific approaches.”
I thought the idea was brilliant and wanted to share it with our CKN readers, here’s a link: The American Society for Patient-Centered Physicians. Dr. Zitter also gave me the opportunity to ask her a few questions about her thoughts on the potential benefits of integrating palliative care education into mainstream medical training. Please take a look and share/comment. – Karen Irwin, CKN Project Coordinator
A woman with newly-diagnosed colon cancer recalls being alone in her hospital room. She is scared about a pending surgery and uncertain about life after treatment. She is angry. And she is struggling with the question, “Why me?” She remains silent, reluctant to reveal any of her emotions and spiritual distress to her loved ones … to burden them.
This is the very type of situation in which a professional chaplain can help. Supporting individuals regardless of religion or beliefs, or no religion or beliefs, multi-faith professional chaplains are trained to listen, to be nonjudgmental, to tap into a person’s inner strengths, and to provide comfort and meaning. They help patients and their families navigate serious or life-threatening illness, end of life, and grief.