The professionalism in hospitals may have contributed greatly to better data collection and use of technology, but after a visit to a hospice and an ICU unit recently, I wondered what has happened to care. Our system is failing us.
The nursing staff were chatting, looking at monitors and inputting information onto medical systems around a central ward desk. Meanwhile the dying were alone. Awake, alone and facing death.
Emergency Departments are well known for being noisy and non-patient friendly. But it is not the chaos of the acutely unwell that make the noise. Over the last two years I’ve spent a mountain of time in EDs; an extremely unwell friend with that flu of 2017, as well as my father who became one of their ‘frequent flyers’ Two different hospitals, but the cultures were the same. The noise of staff – around that central desk with all the monitors, minimal contact with patients and chattinng.
My father’s last 3 weeks were in a hospital room. The staff were efficient, chatted to each other as they changed his sheets, bathed him, did his observations, and then they were off. Back to the nurses’ desk.
Every night I stayed there. After a few days it became clear that ringing the patient bell usually entailed an hour wait. So I would call for morphine as soon as dad became slightly uncomfortable, so that by the time they arrived he actually needed it. I took on the role of providing urine bottles and warm blankets, and cool face cloths for a burning forehead. All the little things that someone who knows them can see but a nurse who is in the room for 5 minutes doesn’t.
I am not the first to lament the lack of compassion and care that has accompanied the professionalisation of medicine. There have been many clinicians who have implored or reminded their colleagues to see the whole patient, the person, rather than merely the body, or an organ system. This is particularly salient in large industrial organisations – hospitals – but also as medicine fragments into even greater numbers of specialties, so that the chronically ill and frail elderly find their days structured around getting transported to appointments at an increasing number of specialists, at greater risk of adverse reactions from multiple medicines and draining their limited time and finances.
The British psychiatrist Chuchinov wrote in the British Medical Journal in 2007 that the values of kindness, humanity, and respect are the cornerstone of medicine and are too often forgone in modern healthcare. He argued that for very ill or dying patients, it is too easy for their sense of worth as a person to be diminished, their dignity lost, if the clinician cannot respect their personhood.
Chuchinov provides an ABCD of ‘dignity-preserving treatment’ as a guide for incorporating into every interaction with a patient. Attitudes include prompts to self-awareness by the clinician –do my attitudes to this patient enable me to demonstrate empathic behaviour? If not, how can I achieve this? Behaviours include giving patients your full attention and maintaining contact with the patient after all curative options have been exhausted. Compassion is a gentle touch on the shoulder, arm, or hand, a look of sympathy. Dialogue is crucial to a person’s sense of self and dignity. By understanding that a patient with severe arthritis is a musician, then the significance of the lack of function – even if pain is ameliorated – is much clearer to the clinician and enables a true partnership in achieving the patient’s goals of care.
Most responses to Chuchinov’s article were thankful of the reminder of the importance of respect and kindness. But one thoughtful reply in the BMJ by Daniel Munday, a palliative care specialist, outlined quite specifically why this is currently unachievable. Multidisciplinary teams and shift work in hospitals result in a very limited time for any one health worker to get to know that patient. Added to this, the hospital system is engineered for efficiency, compromising continuity of care in return for complexity of care and checklists. Continuity is now embodied in the transmission of evidence-based information about processes and treatment. This accounts for the hours of bureaucratic work undertaken at the nurses’ desk, who could otherwise be rubbing someone’s stiff legs or noticing they hadn’t eaten for a day.
This shift in culture has been recognised in Britain. Studies in the UK demonstrated nurses spent more time with paperwork than patients and the UK Government responded by announcing a “Time to Care’ reform in 2012. Responsibility for an individual patient to a senior ward nurse, and a release from bureaucratic work were key features. Hourly or two hourly ’intentional’ ward rounds were implemented to ensure nurses were aware of the needs of each patient. A 2017 BMJ review by Sims et al concluded the reform has had mixed results, but overall has reduced the number of patient call bells, increased the frequency of patient-nurse communication and decreased the number of patient falls and bed ulcers.
We are yet to have the conversation in Australia about care and compassion. I had the flexibility to care for my dear father but most family members either cannot, or are unaware of how little ‘care’ their elderly loved ones are receiving. The clinicians we have are acculturated within a large industrial organisation. But it must change. Daniel Munday suggests that we urgently need to rehumanise the health system. As we face a year of almost predictable horror stories of neglect that will emerge from the Royal Commission to Aged Care, we must take stock of what we ‘outsource’ when a vulnerable person enters a large organisation such as a residential aged care or a hospital. The current bureaucratic systems of managing funding and accountability do not include time spent chatting to a patient, soothing them, attending to a person’s loneliness, as though these are not essential elements both in healing and also a good death.
Chris Harrington spent 20 years developing social policy in Federal agencies and is now undertaking a PhD in Gerontology and Geriatrics