Careful, kind care is our compass out of the pandemic fog
BMJ 2022; 379 doi: https://doi.org/10.1136/bmj-2022-073444 (Published 14 December 2022) Cite this as: BMJ 2022;379:e073444Linked Opinion
A system that must be gamed or learnt: a patient’s perspective
Healthcare has become industrialised. Healthcare organisations have largely responded to rising demand, increased harm, and growing costs by applying management and improvement approaches from manufacturing and engineering to healthcare delivery.1 In the process, they sought and achieved much needed standardisation, reliability, and efficiency. For example, the Aravind eye care system has optimised flow and efficiency, leading to high quality and lower cost cataract surgery for millions of people in India.2
Relentlessly pursued, however, industrialised healthcare turns patients into widgets and clinicians into production line workers, the work of caring reduced to processing people through the system. Industrial healthcare has exhausted care givers and patients,3 and morally injured, burned out, and spent clinicians,4 making it humanly unsustainable.
Too often, industrialised healthcare hurriedly “processes” patients, each patient indistinguishable from the next, at the expense of preserving continuity of relationships. Clinicians work under the illusion of knowing patients because they have looked at their electronic health record or reviewed their answers to screening questionnaires. They apply diagnostic labels and prescribe standardised treatments recommended for patients like this, rather than for this patient. It’s not surprising—given these data hungry systems—that clinicians, as automata, spend almost half their time with patients retrieving and entering information, thereby missing opportunities to notice, listen, or understand each one of these persons.4 These same clinicians are interchangeably allocated and deployed as equipment, with little regard for personal preference of where or when they work.
As patients accumulate medical conditions, they shoulder heavier burdens of treatment.5 They must navigate a maze of administrative hurdles, portals, and services to access health “care” services. The work of accessing care, implementing self-care, and of completing these patient “errands” frequently overwhelms their capacity to respond to life demands.6
Depletion of care
Covid-19 and its pandemic fog arrived as industrialised healthcare was reaching its apogee. A “new normal” was heralded beyond the covid-19 pandemic, but no threshold or dawn has become apparent in the transition from the pandemic to the post-pandemic world. Instead of a before and an after, a thick fog now envelops and disorients patients and healthcare professionals.
Some see the way out of this fog as turning towards a higher tech, lower skilled, and even more industrialised healthcare. They see speeding up the flow of the production line as the answer to current healthcare challenges, such as ever rising demand and reduced resources. But more of the same will lead to healthcare that is increasingly dehumanised, transactional, generic, burdensome, and cruel.3 Importantly, it fails to address the fundamental problem with industrialised healthcare: the depletion of care.
To care is human; policies, systems, institutions, or technologies cannot care. Care requires a person to notice another’s human situation and to respond to it.5 In healthcare, that response should be safe and based on the best evidence, but also specific, and co-created with and for each patient. Healthcare must also be kind, aiming to simplify treatment plans and navigate increasingly respectful healthcare services. Industrial healthcare is not designed to support careful and kind care6; the pandemic has shown us the need to act differently.
Antidotes to industrialised healthcare
If we are to be successful, we must tackle the different manifestations of industrial healthcare: hurry, blur, burden, and cruelty. Hope for change is born of action that cultivates care. Examples include the global movement “What Matters to You,” which draws attention to patient “biography” as well as their biology, thus reducing the incidence of “blur” and enabling patients to be seen in “high definition.”7 Similarly, a Scottish healthcare policy initiative, Realistic Medicine, seeks to enable greater personalised care for the growing number of people living with multiple, complex, and fluctuating health conditions.8 The Making Care Fit Manifesto, an international consensus statement, calls for shared decision making so that plans of care, co-produced by patients and clinicians, maximally support the goals and priorities of each patient while minimally disrupting their lives and loves, reducing the burden of treatment.9
Fostering the conditions for care also includes initiatives such as a monthly virtual “Conversation for Kindness,” which gathers an international group to uncover and discover ways to introduce kindness into healthcare, focusing on compassion and humanity.1011 A social enterprise, Kaleidoscope Health and Care, is implementing innovative organisational arrangements that depart from industrial management approaches to promote mutual care among staff, while running projects that advance kindness, connection, and joy in healthcare.12
These synergistic endeavours and others131415161718 offer antidotes to industrialised care and fuel our hope. At the same time, however, improvements, incentives, or inventions that leave the system fundamentally unchallenged cannot bring about careful and kind care for all. A radical commitment to care and its re-humanisation is our compass out of this pandemic fog. This demands a stubborn, long hauled, and creative effort from all sectors and constituents to eradicate cruelty, make time to care, and make healthcare services simpler, easier to use, and more respectful. This will entail rehabilitating experienced but hurt clinicians and rekindling the motivation of compassionate people pursuing careers in healthcare, preparing them to care with both competence and compassion.6 Culture, policies, procedures, systems, training, and leadership behaviours that obfuscate care will also need to shift.18 Communities must be supported in organising mutual care, to acquire the skills necessary to care for one another. Not all suffering demands a healthcare response, and not all responses to suffering need to be professional.19 These efforts can promote more sustainable healthcare, both humanly but also environmentally.20
In a world marred by war, incompetence, greed, and hateful intolerance, our belief in care may feel profoundly naive. And yet, “darkness cannot drive out darkness,” said Martin Luther King, “only light can do that. Hate cannot drive out hate; only love can do that.” We believe in driving out industrial indifference with care. A radical commitment to care, for and about each other, with each other, and for our planet, is our compass out of this pandemic fog.
Footnotes
Competing interests. Victor Montori and Dominique Allwood are officers of the board of The Patient Revolution (http://patientrevolution.org), a charity dedicated to advancing careful and kind care for all. The charity receives all proceeds from the sales of Victor Montori’s book, Why We Revolt: a patient revolution for careful and kind care. The authors derive no income from these activities.
Provenance and peer review: commissioned; externally peer reviewed.