A woman with multiple sclerosis died of undiagnosed cancer despite seeing a neurologist and GP regularly up until her death, a WA coronial investigation has heard.
An inquest into the 2014 death of Pamella Rees was told that her symptoms of metastatic cancer of unknown primary origin could have been explained by her other illnesses, including MS, emphysema and trigeminal neuralgia.
The woman, who had MS since 1991, had persistently rejected offers of care from MS organisations and palliative care services and preferred instead to be cared for at home by a friend who was increasingly unable to cope, the inquest heard.
She was seeing a GP regularly to obtain medications for her pain and to control her MS symptoms, but he said the woman’s condition had appeared stable on her last visit, 28 days prior to her death in June 2014.
The GP said he had little experience in the management of MS as she was his only patient with the condition, and he had expected the patient’s neurologist to be providing discussions about life expectancy and palliative care.
However the woman only saw her neurologist, Dr Susan Ho, at six monthly intervals and this was primarily to obtain medications such as Avonex, Lyrica and Tegretol, the inquest heard.
Ms Rees last saw her neurologist about four months before her death, at which time it was considered that the Avonex injections had stabilised her MS and there was no obvious progressive deterioration. The woman had said she was feeling better apart from a recent flare up of her trigeminal neuralgia.
The neurologist had previously referred the woman to MSWA (Multiple Sclerosis Society of WA) to provide support, but attempts to provide home visits by nurses and social workers had been strongly rejected, by the women telling them they could “stuff” their services. Similarly, after initially accepting some help from palliative care group Silver Chain the patient had refused visits from their nurses.
She instead relied on day-to-day support from a childhood friend, who eventually had to give up his job to provide 24/7 care for her. The inquest was told he was a well-intentioned but ‘unworldly’ man who was often unable to persuade the strong-willed patient that she should accept medical care.
Her GP said the patients symptoms such as weight loss, muscle wasting and fatigue could be attributed to MS and other co-morbid symptoms, and she did not appear to have red flag signs and symptoms of cancer. The patient had been referred to several hospital services such as a dietician but had failed to attend them.
The inquest heard that the woman had shown rapid deterioration in the last few weeks of her life, but had told her carer that she did not want to go into hospital or a respite care facility.
The coroner concluded that “Ms Rees’ cancer was not diagnosed largely because her obvious symptoms were explained by her other known medical conditions and she did not disclose any additional information to her GP that might have led to further investigations.”
He said there were many good services available for people with MS and co-morbidities but this depended on patients being willing to accept them.
“The evidence establishes that Ms Rees had many services offered to her but she chose instead to rely upon her friend, despite his lack of nursing experience and the demands it placed upon him. In the end, this resulted in her last days being needlessly painful, undignified and uncomfortable,” he said.
“Whilst it was Ms Rees’ right to make that choice, it was agreed by her carer that in hindsight there were better choices available to her … It is important for people in similar situations to Ms Rees to know that there is help available in the community, for little or no cost, if they are only willing to accept that help.”