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Waiting for End-of-Life care: When pain matters and why palliative care can’t be postponed
 



My mother died of advanced breast cancer on March 8, 2014. She was a woman who was misunderstood and lived in excruciating and unnecessary pain for months before she died. There was no reason why she had to live the last part of her life in so much agony, but she did.

When we were told that the breast cancer had spread to Mom’s bones and other organs in November 2012, we knew what this meant, that Mom would eventually die from her disease. What we didn’t realize was that the suffering she would endure could have been avoided.

Although many cancer patients receive palliative care in their last year of life this was not the case for my mother. As Mom’s illness evolved, her pain became progressively worse. The medications brought her little relief and she found it extremely difficult to carry out simple tasks. A spinal pain block was suggested, but after weighing the risks associated with this procedure, Mom declined. I should mention that at that time my mother was told the pain block was the only alternative to using oral opioids to manage her pain.

By fall 2013, Mom’s pain control was still lacking, but her meds continued to be refilled. The “system” was seemingly failing someone with a terminal illness who was suffering so much. In sheer desperation, my mother often overmedicated herself. With her pain intolerable, she downed those opiates like candy. And sadly, on her last Christmas day with us, she arrived at our house feeling so sick we had dinner without her. All this time, I was unaware of any monitoring that was being done to ensure the safe use of the medications that she was taking.

I should note that I was my mother’s primary caregiver. With a father who was showing signs of early dementia and being the only sibling living locally, both of my parents’ medical care rested with me. But at this point of her disease, Mom wanted to take “control” most likely because she couldn’t control anything else.

When Mom was diagnosed with metastatic disease introducing palliative care early on could have benefitted her greatly in addressing the pain and other symptoms she experienced. This early integration into End-of-Life care may have better prepared my mother and our family for the journey we would take with her towards her death. But sadly, most people receive palliative care only in their last month of life confirming that there are evident gaps in care for terminally ill patients.

Mom described her pain as unbearable. That was an understatement. Her daily updates to me focused only on the pain which by then was all-consuming. Our mother became confused and disoriented, ate little and barely slept. She was often short of breath which caused her to wake at night in panic.

As a family, we felt helpless, unable to provide my mother with any relief from a disease that was causing her so much pain. As a daughter and caregiver, I felt I had failed my mother and had not been able to advocate on her behalf.

After several trips to the emergency room, some effort was made to begin home palliative care with nursing visits. All this came too late with nothing changing to lessen Mom’s constant suffering. I’m not sure if the family doctor or oncologist were expected to arrange the hospital care Mom badly needed, but I wasn’t aware of any referrals by either of them.

So the torture continued for Mom in her every waking moment until February 2014, when she had enough and called an ambulance.

I joined Mom in the hospital emergency room and for the first time in months, she seemed relieved. Mom was given intravenous drugs to control her pain and waited to be admitted. Her new scans showed more tumor growths in her lungs and new ones in the brain and liver. Mom had little time, a few weeks at most. We were advised to say our goodbyes as she would soon deteriorate.

Mom was transferred to the cancer ward in a larger hospital. She was overseen by an amazing palliative care team during her last days. While additional scans indicated severe, irreparable liver damage, it was difficult to determine whether this resulted from the worsening metastatic disease or the heavy use of oral pain killers, but at this point, it really didn’t matter. Although we had hoped for a bed at the palliative care hospital, one became free as Mom was declining and we didn’t have the heart to move her again.

Our family was supported tremendously during Mom’s last days in that hospital ward. Staff could not fathom why it took so long for Mom to be hospitalized given her condition. Her bones were literally disintegrating especially her vertebrae and I cringed when I remember feeling the pain in her face while the nurses shifted her. As another comfort measure, Mom began radiation therapy on her brain, but after one session she refused further treatment.

There is much dysfunction in a system that has many terminally ill patients suffering needlessly as Mom did. Given the number of drugs she took to control her pain and the fact that admission to palliative care was not offered as an early option is distressing. Mom’s final “admission” was unplanned as in most cases and I can’t help but feel a lack of a sense of gravity for her advanced illness and how it was affecting her.

Following Mom’s death, I found a bag overflowing with opiates. That was disturbing. I remember the oncology nurse phoning me a few days before mom “admitted” herself. She was concerned about mom’s frequent calls asking for more pain medication. When I checked the long list of prescriptions filled over the preceding months, all from her oncologist, I was shocked.

It was inevitable that my mother’s disease would get the better of her. I am not discounting that fact. I do question, however, why someone like my mother was not taken seriously when it was obvious that her suffering was extreme and her pain unmanageable. Why isn’t there timelier access to palliative care admission? My mother’s pain management or lack thereof should have been addressed long before her condition became an urgent matter. I live with the reality that the need for early referral to palliative care admission is still a challenge, but I am hopeful that my mother’s experience will soon be an anomaly instead of a failure to address someone’s suffering before it’s too late.

Postscript:
Fast forward to three years following my mother’s death. My father, who already had dementia kept falling over a six-month period. Each incident brought him to the emergency room and occasionally a hospital admission. His hemoglobin was found to be consistently low. The drill was the same: After a transfusion he was sent back to his residence only for him to fall again and the ER cycle of consult, battery of tests and transfusion were repeated once more. Finally, a CT scan was done which showed a large tumour in Dad’s small intestine. Pushing 88 years, surgery and other treatment were not an option and Dad was offered spot in the palliative care. He well-cared for by an amazing staff and we were all supported tremendously. So, I am hopeful that things are changing, slowly, one patient at a time.