'The Whale' - highlighting the need for improved care for people living with severe obesity

12 April 2023

An overlooked population

In bringing The Whale to the big screen, Hollywood has shone a light on a seldom heard, but growing population – those whose health is affected by severe, disabling obesity, causing them to be housebound.1 The film’s storytelling and production choices have been subject to much, often highly polarised, debate. But whether you love or hate it, there is no doubt that it has increased awareness of what is a highly marginalised population, who exist largely unseen behind their front doors, perhaps only visited by a handful of close family, friends and carers/health professionals.

As primary care clinician-researchers, with an interest in obesity, we want to highlight that individuals like Charlie, the film’s central character, are poorly served by current health care research and practice. People living with severe obesity (let’s move away from the word ‘morbid’)2 who are housebound, or ‘shut-ins’ as they are known in America, are largely shut out of the health care evidence base.  As the film makes plain, they need compassionate, person-centred care, the same as anybody else.3 However, there are additional considerations and needs that are not currently well met.

 

Gaps in the care system

Our modern care system prides itself on providing evidence-based care. Yet research has failed to keep up with practice in this area, meaning guidance is conspicuous by its absence. So individuals and professionals alike can struggle with relatively basic care needs such as skin care, continence promotion, and drug dosages.4   

As an example, take the seemingly straightforward question of how many people there are in the UK who, like Charlie, are living with severe obesity? The honest answer is that we don’t know. A key reason is that services often don’t have the right scales available to weigh people living with larger bodies, who commonly need wider, low-profile scales to allow safe access.5 Simply put, we are stuck in a cycle of not having the equipment to collect the data, so not having the data to tell us we need different equipment. This results in building hospitals and care homes that do not fit our population, leading to expensive retrofitting, or excluding people from receiving safe and effective care.6 In this way, our health system is systemically biased against people like Charlie. It is hard to fund research and develop services for people like Charlie, when according to the data, they don’t exist.1

A further factor is that this population does not fit neatly into the siloed structures of most care systems. Severe obesity impacts care need and provision in many ways. An obvious example is needing larger equipment and more space, such as widened doors, to accommodate people, whether in their home, GP surgery or hospital operating theatre.7 Most care professionals will care for people living with severe obesity at some point, making it everyone’s issue. Yet in organisational terms – it belongs to no one single department or profession, meaning care provision is largely ignored at a higher organisational level.6 Obviously, weight management is key. But not everyone wants or has access to weight management, especially those who are housebound.8 Additionally, little training exists to help staff understand both physical and psychological care needs.9 The result is individual professionals doing the best they can, like Liz the nurse in the film, but with insufficient (or inappropriate) resources. People’s care experiences are often poor and undignified due to their body size, with negative impacts physically and psychologically.10

 

The value of lived experience

More positively, the evidence base is significantly improving in documenting the lived experience of people living with severe obesity.10 Although notably this is not one single perspective, but multiple diverse experiences, which may explain the mixed reactions to The Whale.11 These provide us with numerous starting points for improving the care of people living with severe obesity including training for staff, better equipment and improved access to weight management.

If The Whale underlines the need for improved care for people living with severe obesity, then Hollywood will have served people like Charlie well.

 

If you have been affected by issues raised in this blog, there are peer support organisation that can help Obesity UKObesity Empowerment Network.

For insight into The Obesity Action Coalition’s contribution to The Whale see https://www.obesityaction.org/the-whale

If you want to help challenge weight stigma, try Public Health Scotland’s learning hub Challenging weight stigma.

 

 

Blog written by Kath Williamson, Registered Nurse working in Health and Social Care, PhD student, University of Glasgow, and Dr David Blane, GP, Senior Clinical Lecturer, University of Glasgow, Steering Group Member of Obesity Action Scotland. With thanks to Ken Clare, Chair of Board of Directors of European Coalition for People Living with Obesity for his helpful comments.

 

References

  1. Williamson K, Nimegeer A and Lean MEJ. Rising prevalence of BMI ≥40 kg/m2: A high‐demand epidemic needing better documentation. Obes Rev 2020; 21:4: e12986.
  2. Gagliano-Juca T and Apovian CM. Eliminating the “Morbid” in Obesity: A Step Toward More Sensitive Documentation in the Era of Open Notes. Ann Intern Med 2021; 174: 1452-1453.
  3. Ells LJ, Ashton M, Li R, et al. Can We Deliver Person-Centred Obesity Care Across the Globe? Current Obesity Reports 2022; 11:4: 350-355.
  4. Williamson K, Blane DN, Grieve E, et al. Overlooked and under-evidenced: Community health and long-term care service needs, utilization, and costs incurred by people with severe obesity Clin Obes 2022; 13:2: e12570.
  5. Williamson K, Blane DN and Lean M. Challenges in obtaining anthropometric measures for adults with severe obesity: a community-based study. Scand J Public Health. Epub ahead of print May 1, 2022; doi: 10.1177/14034948221089111.
  6. Parkinson M and Thompson J. An exploration of the challenges of providing person-centred care for older care home residents with obesity. Health Soc Care Community 2021; 30:4: e1112-e1122.
  7. Cowley S, Bowman B and Leggett S. Impact of increasing obesity on primary health carers: an Australian perspective. Journal of Paramedic Practice 2013; 5:9: 514-520.
  8. Robertson C, Aceves-Martins M, Cruickshank M, et al. Does weight management research for adults with severe obesity represent them? Analysis of systematic review data. BMJ Open 2022; 12:5: e054459.
  9. Capehorn MS, Hinchliffe N, Cook D, et al. Recommendations from a Working Group on Obesity Care Competencies for Healthcare Education in the UK: A Report by the Steering Committee. Adv Ther 2022; 39:6: 3019-3030.
  10. Farrell E, Hollmann E, le Roux CW, et al. The lived experience of patients with obesity: A systematic review and qualitative synthesis. Obes Rev 2021; 10:1: e13334.
  11. ConscienHealth. Anecdotes and studies of lived experiences with obesity, https://conscienhealth.org/2023/03/anecdotes-and-the-study-of-lived-experiences/ (2023, accessed 19 March 2023).
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