As a specialist nurse who coordinated care for adults with malignant brain tumours for nearly 7 years, I have followed with interest the recent media coverage regarding an infamous neurosurgeon.
My role was in a regional cancer centre, coordinating multidisciplinary team meetings and post-surgical treatments including chemotherapy and radiation. During this time, I saw some of the best and worst outcomes from some of this doctor’s surgeries. From the ‘miracle’ 15-year survivor of glioblastoma multiforme to the devastating outcome from a young mother’s failed surgery (death within days), there is one thing they all had in common.
Hope.
Families will do anything to buy more time with their loved ones. I have seen people take out multiple mortgages on their house, cash in their superannuation and go into debt for hundreds of thousands of dollars to pay for futile surgery.
The thing that was missing for each of these families was an honest and up-front conversation about their quality of life in relation to their diagnosis, treatment options and prognosis. The focus was usually on treatment to cure or prolong life, regardless of the impact. Desperate people will risk everything for that chance.
Even when local specialists were hesitant to refer, people pursued an opinion and opted to have surgery that was not based on evidence and often carried a high financial burden from the self-proclaimed ‘world’s greatest surgeon’.
I tried to be the tempering voice of reason when patients told me they were seeking surgery that local neurosurgeons, in consultation with their peers, had declined to perform. I dutifully forwarded the scans, coordinated the appointments, and in the background I quietly spoke with families to provide as much information as I could and manage their expectations.
I would try to talk to them about what mattered most, about their values and the things that gave their life meaning and were important for the future. Some said that having extra time was more important than anything else. They were willing to take the risk.
I gently tried to remind them that their follow up after surgery would be complicated. Local surgeons absolutely refused to continue care after a patient had been operated on by the ‘maverick’ surgeon. Patients would always need to travel for follow up appointments. Their clinical information would not be available locally if they needed to go to the emergency department or had a crisis here. At best, the referring specialist would get a letter or a discharge summary. I tried to reinforce that whatever time left was precious, and that this could be better spent with families rather than in strange cities and hospitals and travelling backwards and forwards for appointments.
Inside I was screaming. So often I wanted to refer to palliative care so that a detailed conversation about what to expect and their wishes for the future could take place and help with the decision making process. This was sometimes blocked by doctors with the phrase ‘you can’t take away their hope’. After gaining consent from the patient, I would make the referral anyway. People that met with palliative care first sometimes changed their mind about the surgery and shifted their focus to making the most of the present with good supportive care and symptom management, instead of clinging to an uncertain future.
I know there are success stories. These are the ones you see at fundraisers and in the media. But for every success story, there are countless failures. People who died, or lost function and the ability to even communicate with their family, only to eventually die anyway.
Surgeons who promise the world without inviting palliative care clinicians to be part of the multidisciplinary team should immediately raise a red flag and be consulted with caution. Hope is important and should be nurtured, but the truth needs to be told and expectations managed. Treatment should be based on best evidence and consensus of peers. There is no room for ego when someone’s quality of life is at stake.
The recent media coverage has not only shone a light on these terrible personal tragedies, it has highlighted a much broader issue than individual surgeons and poor patient outcomes. This issue is the ability for people diagnosed with a life limiting cancer or chronic illness to access palliative care from the time of diagnosis. Currently, many Australians are unable to access high-quality palliative care where and when they need it. This is especially difficult in rural and remote Australia and for people from diverse needs groups, including Aboriginal and Torres Strait Islander Communities.
Increased funding for specialist palliative care services is essential. Palliative care should be available at the outset, embedded within all multidisciplinary teams, and included as standard care – not a last resort when everything else fails.
