Stephanie Hinton is a medical student in the Class of 2019 at Queen’s University
It’s August 17th. My grandmother died today. She never made it to palliative care. Instead, she was kept in the corner of a hospital room surrounded by empty walls and a window looking out over a parking lot. She was confined to her bed, barely conscious, and at the mercy of those with little experience in end-of-life care because she had not quite been deemed “palliative.” I sat by her bedside for 12 hours a day, 3 days in a row, leaving only to sleep. I watched her grimace in pain and counted down the hours to the next dose of pain medication. It would finally come — four hours late and barely offering the relief she was looking for. We waited for a doctor to come check on her and answer our questions. We were told they didn’t know where the doctor was or when the doctor was coming, or — my personal favourite — “Doctor’s don’t need to keep you informed of every care decision.”
She had been refused IV hydration and kept NPO, and her vitals were never checked. When they were finally checked, she was saturating dangerously below 90%. On August 17th at 8:00 am, we received a call telling us she would be moved to palliative care. At 8:15 am, we got a call telling us she had died. She was alone. We had been given empty promises the night before that she “might pull through,” and we were unable to stay the night. We were given the “privilege” of seeing her 45 minutes after she had passed, the “privilege” of calling family members to ask them if they would like to come and say their final goodbyes. We had the “privilege” of sitting by her bedside and waiting for family to arrive long after she had transitioned between life and death, doctors and nurses nowhere in sight to offer the support we desperately needed. We sat with a dreadful feeling, wondering how we could have better advocated for her and knowing she was not given the dignified death she deserved. This feeling would linger and creep up months after her death.
My first palliative care experience was during my family residence block. As I entered the hospice and observed its tranquil setting, my mind could not help but wander and wonder what her death could have been like. Palliative care offers serenity for patients and families in the final weeks, days, and hours of life. The staff and environment are supportive and ensure that patients and families are kept informed and comfortable in a non-judgemental and caring environment.
Palliative care environments help make the transition between life and death an easy and peaceful one. Palliative care environments support families through all aspects of the death process, including support once a loved one passes away. Most importantly, palliative care environments allow families the opportunity to walk away knowing they did everything they could for their family member. They offer a dignified and graceful exit from this world.
This experience has helped me understand how to meet my patients’ and their family members’ needs during the dying experience. It has taught me what to do and, most importantly, what not to do. I will be there for and available to my patients and families during the weeks, days, and hours leading up to and during the transition between life and death to answer questions and offer support. I will advocate for my patients to move into a palliative care environment or involve palliative care at an early stage so no one has to experience what my family had to endure. I will offer my patients the death I wish my grandmother could have had.
It’s August 17th. My grandmother died today. She had made it to the hospice. Her room had a large window overlooking a yard with beautiful gardens, allowing a small peek into the hobby she used to love. Her room is filled with family pictures allowing for reminiscence during her final days. In the background, a piano melody of my grandfather’s plays softly. As a family, we rotate through and sit by her bedside. We hold her hand, share memories, and let her know that we are there. She is provided with IV hydration, food, and oxygen as needed. The nurses ensure that she is kept comfortable and pain-free during her journey. They help prepare us for the end, listening to and recognizing our questions and concerns. The doctor comes when requested and offers support during her final days and hours.
She is at peace, and we are at peace. She will succumb to her illness with dignity. She will pass away peacefully with her family by her side. We are able to stay with her 24/7 just in case she passes in the middle of the night so she knows she is not alone. Just as she was there for us our entire lives, we are able to be there when she needs us the most. We don’t get the call that she has died alone in the corner of the room. Instead, we get to sit with her as she makes the transition between life and death with the caring support of the palliative care nurses nearby. We know that we have done everything we could for her and that she has died a dignified death.
Note: This is a true story. Consent has been given for this story to be told.
Thank you for this very moving testimony to how our health care system often fails patients. It’s shocking that Canada is unable to offer expert palliative care to everyone who needs it.