I wrote the following words in 2009, but never shared them with more than a few friends. I'd like to post them here now.
My elder son’s Year One class is looking at occupations this term. On a big sheet of butcher’s paper on the wall of their room is a list of occupations generated by his class – nurse, doctor, builder, truck driver, farmer, princess, architect, soldier, celebrity – the usual, and not-so-usual interests of 6 and 7-year olds. Throughout the term, they’ll be adding as many occupations as they can, and my son has already added ‘neuropsychologist’. He had to get his teacher to write it out so that he could trace over top, but he has the definition down pat. “It’s someone who helps people with brain problems, Mum”.
I’m going to have a neuropsychology stand at my son’s school science night, and talk to the Year Ones about being a neuropsychologist, because I think it is incredibly important. In his insatiable appetite for bedtime stories, he’s begun to soak up stories about Broca and Tan, Karl Wernicke, and Phineas Gage and his tamping iron. He can even sing some neuroanatomy with the first verse of Pinky and the Brain’s brain song, (to the tune of ‘Campdown races’):
Neocortex, frontal lobe
brain stem, brain stem
hippocampus, neural node,
striate and dendrite’
Though he still tends to sing ‘try and get it right’ for the last line.
(for the full animation, see http://www.youtube.com/watch?v=Li5nMsXg1Lk ).
Why is clinical neuropsychology so important in this time of global financial crises and climate change? And why am I talking about it to my son, and his class, and maybe some of their parents? It’s because neuropsychologists help people from all ages and walks of life, and because we have specialised knowledge and skills that help us to help others understand what is happening when someone’s brain isn’t “working properly.”
My recent personal experience has shown me just how important neuropsychological knowledge is, and how we can’t assume that our medical colleagues will necessarily understand things the way we do.
My father has only recently become well enough to return home from Victoria to Tasmania, after a planned 3-week stay in hospital for some checkups and reconditioning became a 3-month admission. Dad has a history of normal pressure hydrocephalus (first diagnosed and shunted in 2004, followed by a shunt revision in 2005), TIAs, and angina in 2007. He became increasingly irritable and lethargic over the last few months of 2008, often falling asleep in his armchair after breakfast, and his gait fluctuated widely. We brought him to Melbourne to be reviewed by his neurosurgeon, who felt that his NPH wasn’t contributing to the clinical deterioration. Then we had him seen by a cardiologist, who did an angiogram and discovered extensive coronary artery disease, which required 6 stents, inserted over two sessions.
Dad developed a delirium after the first angiogram, and declined further after transfer to a geriatric unit. He became disoriented to place and time, and developed mildly paranoid delusions, nocturnal agitation, and occasional visual hallucinations. I was struck by how distressing this was to my parents, and also to me, even though I knew what delirium was. Perhaps it was even more distressing to me because I was reading about management and prognosis in delirium, and because no-one could tell me why he’d declined, other than speculating on toxicity from the dye used in the angiography. While cognitive decline after CABG is well-known, especially in patients with compromised cerebral functioning beforehand, I couldn’t find much through my distressed search of the literature to suggest that a toxic reaction to angiography dye was a common reaction, and even his cardiologist was surprised. I felt that we had to fight to convince the staff that he’d suffered an acute decline in functioning from being independent, albeit mildly impaired, in January to needing maximal assistance with transfers and ADLs in February. It wasn’t until I found him staring and unresponsive in his chair one day that I felt they were beginning to take us seriously. His mobility declined to the point that a hoist was needed for transfers, his bed was lowered to the floor, and we had him returned to the private hospital under the care of neurologist. The neurologist changed some of Dad’s medications, to remove any that might lower his sodium, and restricted his fluid intake in order to address the hyponatremia that a registrar had thought was not serious enough to be treated. While sodium levels <120 with cerebral impairment is considered to be severe hyponatremia, the neurologist explained that levels below 130 in an elderly person can cause problems. Over the weeks, with an increase in sodium levels from 125 to 134 (just below the normal range), Dad improved enough to be transferred back to hospital in Tasmania, where he is getting regular visits from family and friends. Unfortunately, his sodium levels have continued to fluctuate, and it looks like it will take a long time for him to be well enough to return home.
Having been through all this has given me a concerning insight into how difficult it must be for lay people to negotiate the health system, and how a neuropsychological perspective can make a difference to a patient’s care and outcome, even without doing any formal testing. If I, as a neuropsychologist, felt that I struggled to be heard, and to have my father’s changed status recognised, how difficult must it be for people without my knowledge? Even the backup of my husband, a member of the medical fraternity, didn’t help me overcome the feeling that I was perceived by some members of Dad’s treatment team to be making an inordinate fuss about my father’s condition. I found myself wishing I could slip into the “grateful relative of patient” role, where it is comfortable and comforting to accept the wise advice of the medical staff, but I just couldn’t understand why he’d declined like that, and I couldn’t accept that it was a normal thing to happen to an elderly man. Just because delirium is common in elderly people doesn’t mean that it’s “normal.” I wanted someone to give me reasons for the changes that made sense, and I felt that I had to fight to have them understand that in three weeks, this wonderful, loving, kind man had gone from being oriented to place and independent in ADLs to being disoriented, visually hallucinating, somnolent, distressed, agitated, catherterized, occasionally inappropriate, impulsive, and needing assistance with everything. My father-in-law died last year, 3 years after a stroke that saw him put prematurely into a nursing home, because we trusted the medical opinion that he wouldn’t benefit from rehab. He wasn’t even given the chance to try. He languished, with increasing contractures, even on his unaffected side, because the physio thought he was a “lost cause.” Passive mobilization exercises from a private physio improved his contractures to the point that he was able to sit comfortably in the few weeks before he finally passed away. I wasn’t going to let that happen to Dad.
These experiences have taught me the vital importance of listening carefully to the patient and their families, and of not accepting glib explanations from overworked medical staff who do not necessarily have the time to listen, and then think, about what they are being told. If we hadn’t had Dad reviewed by the neurologist, he’d probably be in a nursing home, or worse, right now, and my heart would be broken. Being a neuropsychologist doesn’t save you from that, it seems.
Being a neuropsychologist does help you to step back and look at the big picture for each person you see – what is their background, their highest level of functioning, their most recent level of functioning? What was the onset and course of their condition? How are they now? What is their medical history, what are their medications, how are all these factors interacting to produce the current clinical issue?
Even without access to our tests, we are able to make a meaningful contribution to the care of patients, because of the way we’re trained to think, and to formulate an understanding of how medical, neurological, psychological, and social factors are contributing to a person’s condition. We may not directly “save” lives, but we can have a huge impact on quality of life. We can also help their families and caregivers understand and deal with their condition, and I know my recent experience is going to make me even more sensitive to how carers feel and are coping.
Disorientation and lack of insight are things encountered regularly in practice with elderly people, but I’d never really felt how distressing it can be to patients or family members since becoming a neuropsychologist. But if I remember way, way back, I remember being awed and bewildered as a child when a dear, elderly family friend spent her last few months in a hospital bed, asking for her Father to come back from the top paddock, wondering if Mother had cooked the scones yet, and only recognizing those she had known for more than 40 years. It was that sense of powerlessness and not understanding that drew me to neuropsychology, because I wanted to help people understand these incomprehensible tricks of the mind.
The contribution of clinical neuropsychologists to healthcare is unique – our training in neurological and psychiatric disorders, in neuroanatomy and cognitive psychology, in normal and abnormal cognitive development across the lifespan, in psychometrics and behavioural observation, and psychology in general, give us an ability to understand a person’s presentation that is not held by any other healthcare professional. There aren’t enough of us to meet the current demand, but there is a role for us in every aspect of acute and chronic healthcare, in prevention and diagnosis and treatment, in admission and discharge planning. We need more training programs and clinical placements in each state of Australia, we need more publicly funded services so that we can help the public. We need to educate the public, and politicians, about what we do. Clinical neuropsychology is important.
PS Dad finally returned home after 6 months in hospital. It took 9 months of fluid restriction for his sodium levels to return to normal, and he was able to move around the home and participate in a quiet but fulfilling family and social life. He accompanied Mum to choir practice and started sharing his beautiful voice at choir functions - his renditions of 'As Time Goes By' and 'Night and Day' were gentle and relaxed, and music gave him pleasure up to the end. We moved back to Tasmania to be closer to him at the start of 2010, but I'll save that story for another time.