Life expectancy for patients with CHF is worse than for any of the common cancers. Despite the advances:
- Around 40% of patients die within a year of diagnosis;
- After the first time in hospital with heart failure, 50% – that’s HALF of men and women – have died by 2.3 years and 1.7 years respectively;
- CHF is associated with about the same number of life-years lost as cancer;
As late as the day before death, people with CHF were ‘predicted’ (it’s obviously a loose term!) as having a 62 per cent chance of surviving a further two months.
In spite of this, another American study (1), found that only 15% of cardiologists thought it was their responsibility to discuss advanced care planning with their patients.
It’s not just an American problem.
A systematic literature review found that, internationally, conversations between people with CHF and healthcare professionals largely focused on disease management. End of life care was rarely discussed. Apparently, this often because of patients preferences.
But since many patients did not realise the seriousness of their condition, surely they couldn’t make anything like an informed decision?
Unsurprisingly, it’s the same in the UK. Most patients report little discussion with health professionals about their clinical status.
One small-scale qualitative study in Scotland (Denvir et al 2014) reported that people with advanced heart disease and their carers experienced fragmented services; difficulty in accessing specialist care; and felt that time for discussion with healthcare providers was inadequate.
Key challenges for healthcare providers were uncertainty of prognosis; explaining mortality risk to patients (presumably this especially means the significant risk of sudden death); and switching from curative to palliative approaches.
Sadly, if anyone does identify that a patient may be nearing end of life, a survey found that one in ten specialist palliative care services in England did not accept people dying of CHF.
It’s not all bad news. There’s some good practice:
In Scotland, with the British Heart Foundation: Our Caring Together programme: https://www.bhf.org.uk/get-involved/in-your-area/scotland/caring-together
Coming out of Kings College Hospital, London. Full details at: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1994396/
Reference 1: BMJ 2016;352:i1456
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