The Mess of the System: Firsthand

My brother and I lost both of our parents to cancer this past June. My mom completed nine months of cancer treatments in early December 2022. My father was diagnosed with stage IV incurable cancer in January 2023. My mom's cancer returned while she was caring for my dad, undetected by us and the health system. She was hospitalized two days before his death, and she died 17 days later.

I lived three hours away and was with them for three or four days on alternate weeks for six months.? I am trying to accept that I did all that I could to help them. I am grateful for my family’s support, my employer’s flexibility, and remote working, that allowed me to be there and be present as much as I was.

Experiencing the health system firsthand has left me at a loss. There are/were many well-intentioned professionals doing the best they could within a system that prevented true full person/family care. However, there was also a general indifference to the limitations of the system that trickled down to our experiences.

I want to share some lowlights. My purpose is to hopefully give anyone reading this pause; to consider what you might do, within your circle of influence, to change the system to make the human experience of dying, cancer, or any health care, better:

-?????? My mom went by her middle name, Doreen, and for the 13 months in the 'system', up until the day she died, the health care providers would call her by her first name, Helen, despite frequent, repeated requests to call her by her actual name. Every change of shift, every change of room, each different health professional – there was no pre-emptive messaging sharing that her name was Doreen.? We had to tell them. Every. ?Single. ?Time. ?Early in the process, I requested an electronic change at the records department and was told it was impossible.

-?????? When my dad was admitted to home based palliative care, there were 17 registered health professionals involved in his care all doing various assessments and offering their own schedule of care. My dad completed nine intake assessments in the first week, five of which were the same assessment tool. I mentioned this to one kind oncologist, who responded “wouldn’t it be great if we would all speak to one another”. I created a binder, with tabs and cover pages, a white board calendar, and a messaging system to track the multiple appointments, form completion requests, and phone numbers (I counted 32 phone numbers of professionals, admin assistants, schedulers, and so on, to track and align with the right organization and service).? My mom never really figured out who was who.

-?????? I won't describe a treatment my mom was asked to give my dad. But know that she was frail, complained of a sore back, and was left to urgently clean a consequential biohazardous mess in their home.? A few days later, my mom was diagnosed with a fractured vertebrae after a visit to ER (despite telling the 17 health professionals of her sore back, yet still expected to provide a medical procedure, described by Google to be delivered by a ‘competent healthcare practitioner’). Once formally diagnosed, my mom cared for my dad for an additional 16 days while the 'system' figured out my parents’ eligibility for supports in the home, with daily phone calls from me requesting an increase in the urgency. By the time they figured it out, my mom was burnt out and requested my dad be moved to a facility, against his wishes.

-?????? My dad was transferred to a facility that offered palliative care. He was amongst others receiving continuing care for TBIs and other chronic illnesses. There were no traditional palliative care services provided other than symptomatic care. There was no family meeting upon admission to let us know what to expect or how to navigate the next few weeks.? We flew blind through it all, including my brother and I in the room with my dad after he had died, not knowing what to do next. The nurses knew we were there, we had walked by them on the way in. It's possible they didn't want to interrupt, but some indication of next steps, as we walked by them, on what to do when we were ready to leave would have been settling. My mother was not there, she was in a different facility about five kilometers away.? I had asked if she might be transferred to be with him on his final days, hoping someone might give us a celebratory, beautiful story to share.? It was never a consideration.

-?????? I met a nurse coming on shift at the facility where my dad was, she had just completed an eight-hour shift on a different floor of the same facility and was beginning her second, overnight eight-hour shift, caring for those on my dad's floor. While grateful for her dedication, I also worry about the care being provided at the 16th hour of a 16-hour shift.? The facility was short-staffed for nurses because the facility down the road had offered $10,000 signing bonuses to any nurse joining them.

-?????? I had been asked to let the nursing station know when we were leaving my mom’s room, and my mom, for the last time after she died. When leaving the room, I went to the nursing station immediately outside my mom’s room to let them know.? I was told that they did not ‘cover’ my mom’s room and that I needed to go to the station down the hall (requiring me to walk past my mom’s room an additional time, heartbroken and in tears).? This felt particularly uncaring, like we were in a restaurant asking the wrong server for some ketchup.?

-?????? We hired a PSW to provide additional support for my dad within the facility (I acknowledge our privilege to be able to do this).? The PSW was a highlight of this experience and cared for my mom as well.? The PSW was the one that recognized the signs my mom was entering the last few hours of her life, after the palliative care nurse told me she had weeks left. Ironically, the PSW was an internationally trained medical doctor, trying to break into the Canadian system. She provided the loving touch, the clean clothes, and the gentle words that were missing throughout our experience.

?It occurred to me during this experience that some of the health care professionals were so very busy, how could they be expected to change the system?? So who will change things?? Some of the changes are not monumental, nor are they expensive - they just need someone's attention. Ensuring that a patient is called by their correct name should not be difficult. However, streamlining the services so that there is one point of contact, not 32, will take some leadership, some dialogue, and some effort to eliminate silos.? But in the long run, and in this current context of a Health Human Resource crisis, it would seem to me to be worth it to prevent 17 health care professionals asking the same questions of one person.