It’s high time for the next revolution.
Time is the most precious, non-renewal commodity we have. The end-of-life journey or the Last 1000 Days is complex and may collide with our beliefs of time well spent.
It is increasingly apparent that patient harm can be caused by time ill-spent. One example is being needlessly bedbound. The dilemma is, when should we pull out of providing good medical care with the conventional constraints that this entails, and simply provide compassionate care?
This dilemma was the focus of the Queensland Health Clinical Senate Meeting recently held in Brisbane. Members and guests were asked to deliberate on the “Last 1000 days: when less becomes more”.
My father died shortly after his 91st birthday. He passed in his “sleep” during the small hours of the morning, in the arms of his beloved wife, with “terminal sedation” trickling into his body via an intravenous cannula inserted in his forearm.
I spoke to my dad on a face-to-face video call on the afternoon immediately prior. He was sitting up in a palliative care unit bed, surrounded by family, his smile remindful of a Cheshire Cat. A tall glass of cold beer in hand, like it was his last supper, dad was unmistakably savouring it. It was his choice to soon stop living.
By my recollection, dad had not recognised me for the preceding two years. Dementia was well underway and that was when my anticipatory grief began.
My stepmother alone was privy to his short spurts of lucidity. For me, all I saw was an increasingly frail man made to senselessly play medical hopscotch between private hospitals, public hospitals, and home.
His medication to prevents thromboembolic stroke was causing gut bleeding requiring transfusion – a common rock-and-a-hard-place scenario.
With each cycle, dad emerged from hospital frailer both physically and cognitively. As required, new aged-care equipment would be procured to counter his increasing frailty but also making him more reliant on them.
There seemed to be an overzealous focus on falls prevention during his hospitalisations, hence the imposed immobility which contributed to his progressive frailty.
Deconditioning in the elderly starts within the first 24-48 hours of hospital admissions. Studies show that after just seven days of inactivity, a substantial number of older adults will experience sarcopenia, and frailty can increase significantly. Some studies suggest a rate of 1-3% loss of muscle strength per day with inactivity. Similarly, there is a parallel hastening of cognitive decline.
I have long been sympathetic to the claim that hospitals were the Industrial Revolution’s attempt to warehouse the sick for the convenience of the healthcare industry. So too, the desire to pen patients in cages like battery hens for greater “efficiency” and “risk” management.
In 2016 Professor Brian Dolan initiated the “End PJ Paralysis” movement to combat the risks of immobility and functional decline in hospital patients by encouraging them to get up, dressed, and moving every day. This global movement spread from the UK to other countries including Canada and Australia, focusing on a patient-centred model of care that reduces complications from bed rest and improves overall well-being. This movement was obviously a culture shift that countered the strong falls prevention lobby.
Poignantly, the law even gets involved. In Queensland, a death from an in-hospital fall that causes a fractured neck of femur is a mandatory reportable case to the coroner because it is considered an unnatural death, resulting from an accident, not the natural progression of a disease. A death is reportable if it’s caused by a traumatic event like a fall, even if there’s a delay between the injury and death, if the injury likely contributed to the death.
The intention is laudable, but I can’t help seeing that the law is sanctioning the deliberate restrictive care through forced immobility of hospitalised patients.
Falls are a sentinel event to patient safety. However, hospital-acquired sarcopenia is a likely antecedent to age-related osteoporosis and therefore fractures, but this remains unreported – an excellent example of counting what we can count because we can and ignoring what we should count because it’s more conceptual.
The greater impact of this physical restrictive practice befalls patients from rural and regional centres who are forced to become dormitory patients while awaiting transfers in and out of major tertiary hospitals to access diagnoses and hypothetical management plans.
Twenty percent of elderly patients from rural and remote locations referred for a vascular surgery opinion at a Brisbane tertiary hospital do not actually warrant an operation. Regrettably, these referrals and the long-distance transportation are made often without reference to what a patient and or their carers may be hoping for, all the while adding to patient immobility issues.
The drivers of healthcare are too often medical intervention-focused, or even worse, activity based funding-focused. To many administrators, ABF means extracting as many dollars as possible out of each patient admission to balance the books.
Another perverse driver may be the word “patient” itself.
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There is an inference that the patient should “endure” the medical assistance provided and not be an active participant or partner in the process. The word patient ultimately derives from the verb patior, meaning “to suffer” or “to endure” and reflects the historical concept of a patient as someone who passively endures both the illness, the patriarchal/matriarchal care providers, and the care itself.
Enter the concept of providing a patient and their caregivers with the autonomy and dignity to determine their own risk level. That risk ought to extend from the level of mobility through to the freedom to reject conventional medical care without being judged.
I was heartened to discover that there are perioperative physicians in some major centres providing an alternate view to patient care other than the purely surgical view of an operation as the only solution.
My dad had what I considered to be a great death. How can we extend that to all? What does a meaningful last 1000 days look like for consumers, families, and clinicians? These discussions should invite the voices of patients and their caregivers to a much greater extent than currently occurs.
It’s high time for the next revolution.
We currently use the phrase “discharged from healthcare against medical advice”. It ought to be “discharged from medical care with all the best of wishes, following a mutually respectful conversation, taking into account the patients and their families core cultural values”.
Let’s change “rest in peace” to “prepare to die in peace”.
Associate Professor Kees Nydam was at various times an emergency physician and ED director in Wollongong, Campbeltown and Bundaberg. He continues to work as a senior specialist in addiction medicine and to teach medical students attending the University of Queensland, Rural Clinical School. He is also a poet and songwriter.
