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Tag Archives: end of life

A Full Life and a Grateful Heart

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.

 

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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.

 


Cancer Pain at the End of Life

 

by Marjorie McGibbon, RN BScN, Paediatric Oncology Patient Navigator

 

There are many tears in the heart that never reach the eyes.  Author Unknown

 

Four years ago this November 1st, I lost my Dad to cancer.  Mercifully, it was relatively quick (6 weeks from diagnosis to death) and his pain was very well managed.  Losing a parent in no way compares to the death of a child, my children are the light of my life, and without them my world would be dark.  The shadows of darkness can block the world’s light for all of us at different stages of our journeys, but it is sometimes deep within the darkness of grief that we learn most about ourselves and the world around us.  Losing my Dad taught me many things, but it wasn’t until a close friend said to me: “But just think about how comfortable he is now, and, he is cancer free again” that I had my “lightbulb” moment in my grieving.  Dad no longer had cancer, and even better, he no longer felt pain.

 

When I think of how I feel as a parent when one of our children experiences pain, my heart aches. Pain in children can be difficult to assess, and as death approaches, becomes even more complex.  There is a protective phenomenon that washes over us as parents and although we may desire with every ounce of our being to take away or relieve our child’s pain, sometimes we are fearful of the tools and practices required. However, it is with these tools, medications, and practices that we see the beauty of being able to provide peace and comfort to both the child and family as end of life nears.

 

Pain is a common symptom for children throughout their experience with cancer.  However, it tends to become more severe as end of life nears.

 

With end of life comes an increase in symptoms, with one of the most frequently reported ones being pain.  We have many forms and types of medications to choose from in managing end of life cancer pain but opioids continue to be widely used because of the efficacy in pain relief.   Fear of opioid use exists across parents of all stages, with parents being fearful that death may happen sooner, or that the child may be in a sedated state until their death.  The goal is not sedation (although sedation can be a side effect), but to provide excellent symptom control, so that the child and family can enjoy peaceful, quality time together.  Typically doses are slowly increased to reach a controlled state of comfort, with preventative medications given to manage any potential side effects.  If distress continues, the pain management team or local support staff will continue to explore the best combination of medications and practices to achieve comfort for the child.

 

Proactive measures can be taken like the administration of medications to prevent nausea and constipation alongside the opioids.

 

Recent advancements in the palliative care approach of pediatric patients are leading clinicians to work early on in the disease with the child and family to discuss the challenges ahead.  If the goals and wishes of the family are explored when the child is relatively well, the family can be better prepared for the impact that end of life challenges may present.

 

Conversations with healthcare providers help parents and children feel in control and well prepared to manage symptoms such as pain, that happen at end of life.

 

Although we have not solved the mystery of pain entirely, we have learned many lessons in the years of helping children on this journey.  Ultimately, open communication, self-awareness of patients/families, as well as staff, and recognizing that just as it takes an entire village to raise a well child, that same village approach must be taken to support the challenges of pain during life and death of the child.

 

Pain relief is one of the top priorities of pediatric palliative care. The goal of pediatric palliative care is to provide comfort care and symptom management, which can be done alongside cancer-directed treatments.

 


Reference

Snaman, J. M., Baker, J. N., Ehrentraut, J. H., & Anghelescu, D. L. (2016). Pediatric Oncology: Managing Pain at the End of Life. Pediatric Drugs, 18(3), 161–180. https://doi.org/10.1007/s40272-016-0168-2

 


 

 

Marjorie McGibbon obtained her Bachelor of Science in Nursing with Advanced Major from STFX University in 2004.  Having always had a passion for working with pediatric populations, she began her career in the pediatric specialty of Oncology/Hematology & Nephrology at the IWK in Halifax.  After also spending time in the Neonatal Intensive Care Unit at IWK, she moved with her husband to northern BC where her practice involved community pediatrics, public health, general medical surgical, as well as prenatal educator & breastfeeding support roles.  Marjorie is passionate about supporting both families and staff caring for children of all ages with life limiting and life threatening conditions, and has recently become a certified trainer in Education in Palliative and End-Of Life Pediatrics (EPEC-P).  Marjorie is the Pediatric Oncology Patient Navigator for Horizon Health Network NB and resides in Petitcodiac, New Brunswick with her husband & two children.  A true Maritimer at heart, she is happiest playing in the waves of the Atlantic with her family in the summer months, and enjoys hitting the slopes with them when the snow flies!

 

 


 

 

Hospital, Hospice or Home: Choosing Where Your Child Dies

SueMcKechnieby 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.

 

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The (Dreaded) Battle Metaphor

TaraBaysolby Tara Baysol, Living with Cancer

 

From the moment I was first diagnosed, I was thrown in the common metaphor of being “at battle” with cancer by those around me placing their own labels on my experience. This has never sat well for me and often left me feeling isolated because I felt the complete opposite of how people described my “heroism” and “strength”.  There was not an ounce of courage or warrior woman inside of me when I was given those labels. I was/am merely living with an illness as millions of other people do with other conditions and circumstances. I squirm at the suggestion that just living with my condition somehow equates me more to a fighter and warrior than anyone else.

 

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Tara’s Story

TaraBaysolby Tara Baysol, Living with Cancer

 

I was originally diagnosed in October 2013 with grade 2 Astrocytoma. I was 27 years old and in my first semester of graduate school at Yale, studying Health Policy. I was experiencing problematic symptoms a few weeks before classes began. After an MRI found a lesion in my right frontal lobe, I underwent a craniotomy in mid-October and withdrew from classes for the semester. A few days after my surgery, I received that life changing call informing me of my diagnosis.

 

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