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Tag Archives: hospice care

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.

 


Part 3 Hospice Series: The Final Ride “Home”

karenhinesserenityroomby Karen Hines, Caregiver

Read Part 1, Part 2

 

Thursday late morning Cassie said “see ya later” to the staff while the ambulance crew wheeled her to the elevator.  Cassie smiled, the nurses returned the smiles amongst tears, we even snapped a quick group picture.  Cass had written on one of the hospital’s white boards earlier that week, “Don’t be afraid, just believe.  Mark 5:36.” She pointed to it as she rolled past.  I tried to smile, but like a zombie, I slowly followed the gurney. Chris and the kids stayed back with our social worker Kathleen.  She spent some time discussing the emotional side of hospice and the idea of “dumping circles”.   She wanted to make it very clear to us that Cass was at the center of the circle, the rest of the Hines 5 were in the next circle, followed by Ashley’s almost fiancé, Jeff, along with the rest of our immediate family and close friends.  The final circle was “everyone else”.  Only support goes “in” and fear, whining, complaining etc. is dumped “out”.  This simple concept was how we were to control what was about to happen at our house for what would be the next 40 days.  Kathleen made it very clear that it is our job to protect each other.

 

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Part 1 Hospice Series: The Unspeakable Word

karenhinesfamilyby Karen Hines, Caregiver

Read Part 2, Part 3

It was a quiet Saturday afternoon, our social worker was stopping by to see how we were all holding up, or so I thought.  You see, our daughter Cassie had just had surgery to remove a large tumor on her spine, which was causing severe leg pain.  Cassie had been a kidney cancer patient for the last four years so we were all pretty used to the scan, surgery, recovery life of a chronic cancer patient.  Her last set of scans revealed several tumors on her spine so Cassie had decided to remove the largest of the tumors, causing leg pain, and join a trial to hopefully shrink the rest. The problem was, before she could join a trial, the pain and numbness in her arms was getting worse.  The remaining tumors were growing fast.

 

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Reflections of an Oncology Nurse on Physician Assisted Death in Canada

JenniferStephensby Jennifer M.L. Stephens, RN, MA, PhD(c), RN, OCN

 

The workshop on physician-assisted suicide (PAD) at the October 2015 Canadian Association of Oncology Nurses (CANO/ACIO) drew enough oncology nurses to fill the room far beyond capacity. Following the 2015 decision of the Supreme Court of Canada in Carter v. Canada to allow PAD, professional nursing organizations including CANO/ACIO, the Canadian Nursing Association (CNA), provincial licensing bodies, and health care employers are scrambling to interpret what PAD means to Canadian nursing and nurses.

 

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End Stage Chemotherapy: A physician’s perspective

Paul Wheatley-Priceby Paul Wheatley-Price BSc, MBChB, MRCP (UK), MD
Assistant Professor of Medicine, University of Ottawa, Division of Medical Oncology, Chair of Medical Advisory Committee, Lung Cancer Canada

 

One of the hardest discussions between an oncologist and their patient occurs at the time of transition from active anti-cancer therapy to best supportive care alone. This consultation has been reported as one of the most stressful faced by the physician, and of course is a nodal event for the patient. It is also clear that patients want their physicians to be honest, up to date and compassionate in these meetings.

 

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