Death, Structures, Power and Belonging

Pritpal S Tamber

March 9, 2023

A conversation with Tony Iton on how death helped him understand life, and some news on our work linking power and dying

Today, I start where everything ends. Death. 

Death is the theme that ties together this week’s episode in our podcast series on community power (a conversation with Tony Iton of the California Endowment) and some work I am doing with the Co-Chairs of the Lancet Commission on the Value of Death

So, what’s the link between community power and death? 

Understanding Death Systems 

According to the report of the Commission, the “powerless suffer most from the imbalance in care when dying and grieving”. The imbalance the authors speak of is that more and more people are dying in health care environments, such as hospitals and hospices, when they’d prefer to be at home, in their communities, amongst their people. Not only is this sad, it’s expensive. More and more money is poured into the care of the dying, often for treatments they don’t really want. 

How did we get here? The Commission says it’s because we’ve medicalised dying. Professionals and protocols have replaced the relationships and networks in our communities that used to help us make sense of death and appreciate that it gave meaning to life. The commission describes how families and communities have been “pushed to the margins” – four words that illustrate how the powerful have treated the powerless. 

How can the powerless push back? Clearly by building their power. Doing so would enable, perhaps force, health care leaders to see what the Commission calls death systems – the “many inter-related social, cultural, economic, religious, and political factors that determine how death, dying, and bereavement are understood, experienced, and managed”. Their contention is that seeing death systems is the first step in rebalancing dying and grieving. 

For the past year or so, I’ve been working with the Co-Chairs of the Commission, Libby Sallnow and Richard Smith, and Michael Little, the host of our podcast series, on how to take the ideas in the report of the Commission and turn them into a system-wide intervention. On March 27 at 1pm BST, Libby, Michael and I will be presenting our ideas in a webinar (register here). It’s a bit early in the day for those of you in the US but if you register, you’ll get access to a recording afterwards. 

Understanding Death 

In this week’s podcast episode, Tony Iton also starts with death (Ratio/Apple). As the Health Officer of Alameda County Public Health Department from 2003 to 2009, one of his roles was to ensure that all deaths were registered. That meant the Department had millions of death certificates spanning decades so they decided to analyse them. What they found was that in some parts of the county people were routinely dying in their early 60s while in others they made it past 80.

At the time, differences in life expectancy were being put down to three things: genetics, behaviours and access to health care. But it was clear to Tony that these things could not explain all, or even the majority, of the twenty-year difference in life expectancy. To understand it, you had to visit the places where people were dying young. And what you saw was systematic differences from the places where people were living longer – an absence of parks, grocery stores, transport, and even potable water. In essence, the resources and opportunities that protect and promote health. 

Rich and poor living in a divided world

“Once you’ve seen that, you’ve seen structure”, Tony says. “And once you see how structures operate, you can’t look away”. And, indeed, Tony hasn’t. In 2009, he joined the California Endowment on the condition that their work would focus on community power as a way to achieve structural change. His contention was simple: resources and opportunities are shaped by policies, policies are created through political processes, and to work through political processes requires power. In essence, how can communities build their power to influence the conditions that impact their health? 

A B C

The programme that Tony joined was called Building Healthy Communities. Over 10 years, the Endowment spent about US$2bn working out how to operationalise that contention. In that period, they achieved over 1700 major system changes and tangible benefits, and they’re now taking what they’ve learnt California-wide. Tony distils their approach down to ABC – a community with Agency (power) and a sense of Belonging can change its Conditions. 

The B is worth reflecting on. Why is it that some people endure conditions that harm their health? What is it about them that makes it ok for policymakers to ignore the harm they’re creating, a phenomenon that some people call policy violence? While it could be argued that some of it is accidental, the sad truth is that it’s only possible because some people are valued less than others. And when this is based on the way people look or the colour of their skin, it’s racism. Indeed, Tony describes belonging as “the opposite of racism”. As a Brit, I’d add it’s also the opposite of classism. 

As you’ll hear in the episode, through ABC: young people in South Fresno now have funds for better parks and open spaces; kids growing up in places made harmful by policies are no longer being criminalised for acting out in school and are seeing their grades improve; and people who have committed minor crimes are no longer having to tick the box for being a former felon, something that prevents them from accessing housing – all structural changes that create the resources and opportunities that protect and promote health. 

We’re nearing the end (the death?) of our podcast series. In the final episode, we want to hear from you. We know from our inboxes that many of you have enjoyed the series and have found that your thinking on how to pursue health equity has shifted. We want to make the final episode a collection of voice memos from listeners. If you’re interested, drop me a line and I’ll send you my phone number so you can send me something through WhatsApp, Signal or iMessage. 

For now, I’ll leave with you with Tony and the extraordinary work of the California Endowment (Ratio/Apple).

Pritpal S Tamber 

PS: To learn more about Ratio’s work, sign up for their newsletter or drop them a line: hello@ratio.org.uk


Previous Episodes in the Series 

The image is by Otto Dettmer / Ikon Images. 

Pritpal S Tamber

I’m a doctor who trained as a medical editor and publisher and now researches and consults on the link between community power and health equity. My interest in community power started when I was the Physician Editor of TEDMED and is explained in My Perspective. I also work as a freelance medical editor and publisher for organisations that want to write high-quality articles and a strategy for their publishing and promotion. Find out more on my About page.

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