Beth Edwards 14th April 2020
In an uncertain world, we all have one guarantee – our own mortality. Steve Jobs once said: “Death is the destination we all share. No one has ever escaped it.” It’s impossible to argue with that.
In 2017 and 2018, I worked as an academic researcher at a world-renowned palliative care institute. It was my job to track patients in our study, completing questionnaires with them each time they moved to a different place of care and every time the had a change in their health condition. Each day I’d get emails telling me that some of my participants had died. This was to be expected, of course, and each death was sad, but what I found even more distressing was that those with lower socioeconomic standing (i.e. less education, less wealth, less income) had worst end-of-life care.
Death doesn’t discriminate, we’ll all face it in the end, but healthcare seemingly does. Research published last year by my friend and old colleague, PhD Research Fellow Joanna Davies highlights consistent socioeconomic inequality in the care received by people towards the end of life. Specifically, people with lower socioeconomic positioning typically fare worse – for example, they do not tend to die in their preferred place, receive specialist palliative care or receive quality care.
As Davies says: “It’s widely recognised that people with lower socioeconomic position have worse health and die at younger ages, the effect of socioeconomic position on end-of-life care is less well understood. Our study brought together all the available evidence from high income countries and found that low socioeconomic position was consistently a risk factor for worse care at the end of life.” Access to specialist palliative care is not created equally. These people are literally disadvantaged to the very end and this is not OK.
We know that more than half of end-of-life patients die in hospital, despite this being the least preferred location for the majority. People usually want end-of-life care to be provided at their home or in a community setting (hospice), and most want to die there, if they can. This discrepancy between preference and reality is more marked in people from lower socioeconomic backgrounds.
Why is this the case? Well, the answer might lie in inequalities in hospice care. Despite much praise, the modern-day hospice movement has historically been criticised as only accessible to the middle classes. Leafy suburban locations and anecdotes of drinks trolleys on wards conjure up the notion of a better way to die – or the ‘deluxe dying’ as described (rather controversially) by Edinburgh GP Colin Douglas, in the BMJ in 1992.
But in the 21st century, any link between wealth and hospice care can surely be quashed – can’t it? Dr Katherine Sleeman, palliative care doctor and researcher, along with colleagues, explored this by looking at the characteristics of people dying in hospices in England over a 20-year period. They found that in 1992, people living in a rich area were more likely to die in a hospice compared to those in a deprived one. Rather than narrowing, this divide between rich and poor actually increased over time. In 2012, 5.3% of people living in most deprivation died in hospices compared to 7.1% of people living in least deprivation.
On average, 80% of hospice care is privately and charitably funded. It’s not unreasonable to imagine that hospices might be unconsciously or consciously biased towards admitting those who may be more likely to leave their services a generous donation when they die. As Sleeman questions, “is this bias a bad thing if these bequests lead to improved care for others?”
These are uncomfortable topics, undoubtably, but as these significant disparities exist and are increasing, we must learn to sit with the discomfort. We must begin to tackle these challenging questions, especially given that life expectancy in England is, for the first time in 100 years, no longer increasing. Sir Michael Marot recently published his updated review, 10 years on, of health equity or lack thereof. For part of the decade, between 2010-12 and 2015-16, life expectancy fell in the most deprived communities outside of London for women and in some regions for men. Austerity policies and widespread reductions in public spending have been implicated in these detrimental health outcomes.
This increasing health inequality is compounded by the fact that death is a costly business. Recent statistics from SunLife’s Cost of Dying Report showed that the total cost of dying in the UK in 2020 is £9,493. This is at an all-time high. It marks a 3.1% increase in just one year and a rise of 42% since SunLife first began tracking costs of dying in 2007.
This ‘Cost of Dying’ figure is the price of a basic funeral (including funeral directors’ fees, doctors’ fees and burial and cremation fees), plus extras like the send-off fees (things like catering, flowers, order sheets and the funeral notice) and the professional fees (hiring a professional to process the estate, for example).
The reason why the cost of dying has increased so much is mostly down to the rising cost of a funeral, which now stands at £4,417 (an increase of 3.4% since 2018). Naturally, there are regional variations too. The average funeral cost is £5,963 in London versus £3,816 in Northern Ireland. If funeral costs continue to rise at the same rate as the last 15 years, the average cost of dying could hit over £10,000 by 2023.
These figures are untenable for most. SunLife’s report found that 63% of people had saved money for their funeral, but of these, only 64% has put aside enough to cover the whole cost. Increasingly, families are having to step in and plug the financial gaps – and for 12% of these families, finding the money causes them notable fiscal problems. Alternatively, people are borrowing money from loan providers (10%) or putting outstanding amounts on credit cards (25%) or selling belongings to cover the cost (15%).
Interestingly, it costs less for people to die at home versus dying in hospital. Research from Marie Curie indicates that the estimated cost for a day of community care at the end of life is £145, compared to £425 for a specialist palliative inpatient bed in hospital. Each year between 355,000 and 457,000 patients need palliative care. If more community services were developed to allow just 30,000 patients to reduce their hospital stay by four days, there would be a potential saving of £34 million. If we prioritise people’s preferred place of death (the community), this would save the NHS a phenomenal amount of money – and everyone benefits.
So, what can be done? We are agreed that everyone deserves the right to a good death. Much planning and due diligence is (rightly) considered for our births, why not apply this at the other end, to our most monumental of exits – our deaths? Social inequality at the end of life demands urgent attention. As Davies says: “We must now start to address this inequality through better monitoring, evaluation and planning of services and importantly begin to understand the mechanisms that explain why this relationship exists.”
Policy makers and healthcare providers must ask the difficult questions surrounding possible biases with hospice-led care. We must learn lessons from the Marmot update, and follow their recommendation that the Prime Minister should implement a world-leading health inequalities strategies and led by a Cabinet-level committee.
We must speak up about this and ensure that end-of-life care meets the needs of all – because, as one of my research participants once told me – death is everybody’s business.
Beth Edwards 14th April 2020