My husband Geoff and I took a trip to Switzerland and Italy to celebrate our 30th wedding anniversary and Geoff’s 58th birthday. Then just 2 months later we received news that would change both our lives forever.
Geoff had a headache for a few days that didn’t get better with pain killers. Then 2 days later I was calling 911 as he was exhibiting signs of a stroke. The ambulance took us to a hospital and within a few hours we had the results from a CAT scan – there was a large tumour with lots of swelling on his brain. Following an MRI, the neurosurgeon told us he suspected it was a high grade glioblastoma, but a definitive diagnosis would only come following surgery and pathology results. Unfortunately, this type of tumour grows extremely quickly and is considered ‘incurable’. Without surgery he would live less than 2 weeks, with surgery and oncology treatment the median life expectancy was 14 months with only 5 percent chance of living longer than 5 years.
I’m an occupational therapist by profession and knew the road ahead was going to be tough one no matter what Geoff’s decision regarding treatment, but Geoff wanted as much time as possible. In fact, on our 30th anniversary he promised me 30 more years and he asked the surgeon to do what he could to help him keep that promise.
The surgeon was able to remove a lot of the tumour, however there was no way to remove it all without causing brain damage. 48 hrs after surgery, Geoff came home – walking well, climbing stairs, feeling ‘great’. He was the poster boy for neurosurgery. Pathology results 10 days later confirmed it was a glioblastoma but results also provided a little more ‘hope’ – Geoff was in the ‘good features’ group which meant his chance of surviving 5 years was now 30%, not 5%.
A month after surgery Geoff and I saw the oncology team at a cancer centre. The team recommended 6 weeks of radiation and oral chemotherapy and he started it 4 days before Christmas. Geoff was a star patient – minimal side effects, positive attitude, in great physical condition both prior to and post treatment. Despite his horrible diagnosis and prognosis providers, family and friends enjoyed being with him. We were fortunate to have a large network of family and friends to support us. Through it all I was able to continue working as a health care planner in the field of palliative care. Geoff also returned to working as a virtual Chief Technology Officer for an Australian company.
Follow-up MRIs were scheduled every 3 months following radiation treatment and Geoff remained on oral chemotherapy. The 1st MRI showed no signs of residual tumour – doctors were extremely pleased, but still cautioned that the tumour would return – just not able to predict when… The 2nd MRI was also clear so we took a trip with family to Newfoundland in the summer where Geoff grew up. Geoff managed most activities, including hiking extremely well. Following the trip the 3rd MRI unfortunately showed the tumour had returned.
The team recommended another surgery to ‘debulk’ the tumour. By this time Geoff had read about patients who had had as many as 10 surgeries and were still alive 10 years later – Geoff wanted to be part of that ‘club.’ So 10 months after his initial diagnosis he had another surgery. Following this surgery there were some signs of neurological deficits, like trouble walking straight and using the computer. But he functioned extremely well for another 3 months, and then the 4th MRI showed the tumour was growing again and his deficits were worsening.
I asked the neuro-oncologist for a referral to home care to assess his safety at home, see if we could keep him mobile and assess his perceptual changes. Based on his diagnosis and prognosis both the physician and I assumed he would be put onto the palliative home care team, however the ‘rules’ at the home care program where we lived only allowed palliative care if you needed “palliative care” nursing and at that time Geoff was managing ok with care from his family physician and the cancer centre oncologist and nurse. So I requested physiotherapy for mobility needs and occupational therapy for perceptual cognitive needs, but was told he could only receive one or the other, not both at the same time – another ‘rule’ I wasn’t aware of. He was offered a personal support worker for 3 hrs/week to help with showering.
Over a month we only saw the physiotherapist once a week, the personal support worker (PSW) 2 times a week and a nurse a couple of times to teach catheter care for nights. During that period Geoff was deteriorating quickly. One morning he couldn’t get up from a lying position without my assistance and he was very unstable on his feet. The next day he couldn’t manage the stairs and I cancelled our scheduled visit to the cancer centre. Only after a call to home care by the oncologist did Geoff then get put onto the palliative home care service. This meant a change in the whole home care team after only 5 weeks but an increase in hrs of support. Now he could have PSW support 3 hrs a day and care from the full team of nursing, physiotherapy, occupational therapy, and speech language pathologists. They also sent in a hospital bed and specialty mattress at no cost to us – Geoff now needed to stay on the main floor of the house.
The first home visit with the new care coordinator she explained that a palliative care physician would ‘take over’ Geoff’s care. I explained that Geoff had the same family physician for 30 years and we had discussed this with his family physician, who was willing to do home visits and manage his care. I asked, “Could he consult with the palliative care physicians, if needed?” She replied, “No, that wasn’t an option” as the palliative care doctors in our region did only direct care, not consultation.
Then the first time the ‘palliative’ care nurse came to our home – she commented “I see that you have refused to have the palliative care physician”. She kept trying to sell me on the fact he’d receive ‘better care’ from the palliative care doctor – even though she didn’t know Geoff’s family doctor. She also recommended we apply for a spot for Geoff to die in a hospice, even though I was clear I was planning to keep Geoff at home until the end. Her response: “Don’t be a hero.”
After only a few weeks on the palliative care team, I needed more help for personal care. I even paid out of pocket for an extra hour a day – only to find out later that the number of hrs we had been receiving could have been doubled. I found this out days before Geoff died, and was never able to increase the hours.
The family physician scheduled to visit 3 times a week and responded to any of my phone calls immediately. Since the palliative care doctors in our region didn’t offer consultation I asked my colleague 2 regions away if she would be the ‘phone-a-friend’ for Geoff’s doctor. He did need to consult with her once when Geoff began having trouble swallowing his medication and we needed to switch away from pills. She was able to guide him on the phone on how to convert the meds. His family physician came when Geoff began losing consciousness and we discussed it could be days before he passed but likely only hours. I was then able to tell our family and his 3 sisters came and helped support me for the next 12 hours. Geoff passed away at home and the whole family was able to come see him, some before he died and some following his death.
I wish I’d known how much expectations were on the family. Despite being ‘sold’ on the wonderful team approach we would receive on the palliative care service, I found myself being the quarterback of Geoff’s care, communicator between the doctor, nurse, personal support worker, educator for any new providers, and relying heavily on family and friends to help out.
I wish I’d known the lack of transparency and lack of open discussions about what patient/family can expect in terms of support. I considered myself to be in the enviable position of understanding the ‘system’ based on my many years as both a health care provider and health care planner and yet there were many unwritten rules and differences across and within regions.
I wish I’d known that the care was so focused on ‘treating’ him, very task oriented and time pressured. I wish they had time to address the holistic needs of Geoff and to assess and respond to my needs as the family caregiver. The nurse was always rushing, trying to teach me how to do things like fill the syringes of morphine. I wanted to be his wife, not his nurse. Rarely, if ever, was I asked how I was doing. And I was the primary caregiver there 24/7.
I wish I’d known that the model of care was driven by providers needs not patients/families. There was an explicit assumption that all family physicians don’t want to do home visits and provide end-of-life care and therefore a palliative care doctor should take over. They didn’t know how to respond when I said Geoff’s family physician of over 30 years wanted to remain involved.
I wish I’d known the intake process for home care services focused on the patient at that time, not based on the patient’s likely disease trajectory and anticipated changing care needs. Therefore after only a month of care from a team of ‘regular’ home care providers – the whole team changed to ‘palliative care’ providers. This was jarring and we had to rebuild relationships with the entirely new team.