My father, Dave, was diagnosed with a Stage IV Glioblastoma Brain Cancer in January of 2016, after being hospitalized in early December 2015. He underwent brain surgery and months of chemotherapy and radiation, after being initially told he would only have a short time to live. We were initially told that with his diagnosis he would survive for approximately 60 days. This became three months, then six months, then one year, 18 months, and then finally the two year mark. He fought this horrendous disease for a long period of time, becoming one of the longest patients his oncologist had had with his diagnosis. Palliative care was never discussed initially, as my father was surpassing all timelines set out for him, and was continuing to fight given a difficult prognosis. The radiation and chemotherapy allowed the tumor to remain stable, not progressing or growing in any other area of his brain. Given the location of the tumor, which had wrapped around a major blood vessel in his brain, any further surgeries were out of the question. The chemotherapy and radiation allowed the remaining part of the tumor (which could not be removed during the initial surgery) to be stable, and there was no sign of progression for two years.
Fast forward to December 2017. At one of my father's doctor's appointments a recent MRI had shown new growth in his brain, but doctors were unclear if this was the tumor spreading, or tissue from the original tumor. We began to notice small, significant changes in his motor skills and abilities. This was startling and scary, as we realized that the tumor had finally progressed. December 25, 2017 my father was hospitalized after displaying stroke like symptoms, losing mobility on the left side of his body. The location of the tumor mimicked a stroke, and with a new MRI we were able to see that this disease had spread significantly in his brain in a very short period of time since the previous MRI. He was hospitalized and the discussion around palliative care was then introduced.
It was my father's wish to remain at home for as long as possible. We wanted to honor this and worked towards home palliative care. This was a new, scary process for my family. My mother, who had been off work since my father's diagnosis and was his primary caregiver, and myself, now taking time off work, took on the roles of his palliative caregivers and planned for his discharge from the hospital. It was terrifying, hard to process, and difficult to understand at the beginning as it was so different and new from what the previous two years had looked like. My father was no longer able to move on his own, requiring a wheelchair and a lift system in the house, limiting him to one floor. He was unable to undergo any more chemotherapy as his body was not strong enough to fight infections, and with his limited mobility his strength was not ideal either. We were again given a short diagnosis - 8 weeks from the beginning of January 2018.
Home palliative care was not an easy process. We were riddled with problems from the beginning and found little help or a contact to turn to for answers. We were introduced to a variety of professionals involved in his care, each with their own role. There was initially not one individual we could turn to to discuss his care as a whole - each person had their own responsibility and involvement, and we needed to deal with each person for answers. After spending a week setting everything up for home care my father was discharged from the hospital on a Friday afternoon, with all services set to start Saturday morning (home care nurse, aids, therapists). No one showed up on Saturday, which was incredibly stressful as we were left wondering what the routine would look like for him as no one was there to assist us or show us how to care for him (in terms of bed baths, nursing concerns, etc.). When we finally were in touch with someone they stated that my father had been discharged as "deceased" from the hospital, and as such, all services that we worked to set up were cancelled without any notification to us. There was also no follow-up upon the declaration of the "deceased" notification. This was the first of many frustrations and problems that we incurred while at home. There was always a lack of communication between all professionals involved, and we were left feeling frustrated, hopeless, and uncertain if were capable of caring for my father properly.
We were unfortunately transferred to hospital palliative care late February 2018, and while it was initially meant to be a short stay for a test to be run, he ended up remaining there until he lost his fight on March 4, 2018. It was a very hard time, and his sudden decline was quick and unexpected. While his stay at the hospital was for only one week, the care we experienced while there was excellent and much appreciated. We were supported and encouraged to spend time with him as less of a caregiver and more of a family, and his needs were taken care of by the nurses. It was less confusing, and we were able to have one person as a point of contact to handle any concerns. The team was on the same page and communicated throughout their shifts. There was never any confusion when it came to my father's care. They were compassionate and understood how stressed and scared we were, and they took care of us as well. I wish the same could have been said for home palliative care.
I found there to be a huge gap in how home palliative care was handled versus hospital palliative care. I wish we had experienced the same compassion, understanding, and ease/comfort in knowing we were capable while caring for my father at home as we did while at the hospital. There was a significant gap in our confidence with the home care team, which resulted in confusion and nervousness around aspects of his care. I would like to see a change in how home palliative care is handled. I believe there needs to be more training for professionals involved and more check-ins with families to ensure they are properly supported and taken care of. The home care aids were angels and we could not have done it without their support and help, but I wish this could be said for the entire professional team. By sharing this story I am hoping that changes come to home palliative care - especially in the area of follow-ups with family, along with proper follow-ups prior to services being cut-off completely (as what happened in our case).