There will be a charge for that...

Three years ago I wrote an article asking if Providing free hospice care for all was still sustainable – or even ethical. Back in 2021, this was largely a theoretical discussion. By 2024, theory has become the reality.

The original article came out of a discussion in the Virtual CEO Group. Participants agreed that providing free end of life care to beneficiaries should remain sacrosanct. However, many felt that due to financial challenges, other services might have to be charged for to ensure this.  

Mark Jarman-Howe, CEO of St Helena Hospice was one of the participants in this discussion. Come 2024, and they have moved some way down this line with several care related income generating enterprises. 

Mark says, ‘The current hospice model is unsustainable therefore the only way we can meet the need is if we maximise charitable, public, and private income. The choice we faced to address our deficit was cut services or see if people are willing to pay so we can protect jobs and services.’

‘Forget me Not’, is a charged for bereavement counselling service open to relatives of people the St Helena cared for, but also to the wider community. They still offer charitably funded bereavement services, but Forget me Not offers relatives a further menu of options that may be suitable to their needs.

St Helena also provide paid respite care for people with a diagnosis of frailty or life limiting illnesses and with stable symptoms. This can include those who have already been referred to the hospice.  

They no longer charitably subsidise any personal care in the home. All such care is fully funded by the patient and family, or the NHS or fast-track CHC. St Helena’s home care is delivered through their care agency. Therefore, all personal care, including end of life care, is now generating a small profit.

More from Mark. ‘For me the issue is not about ring fencing what is deserving of being free and what is not. It is about responding to needs and choice and being more and more agnostic about where the funding is coming from. I increasingly believe embracing this approach is the way to ensure those that will never be able to afford to pay continue to get what they need.’

'There is some culture change internally to work through. However, we're only getting a positive response so far from supporters, donors, patients and families who are just grateful when they get high quality care and support from St Helena. They understand we need to adapt and were often surprised so much was free.’

This approach is at one end of the spectrum of how beneficiaries contribute financially to hospice care. ‘Gratitude giving’, notably in memoriam donations, sit towards the other end. Between these ends sits examples such as ‘prompted payments’ where people may be encouraged to make a contribution towards the cost of a service. Also, ‘payment beyond allocation’. For example, where a number of therapeutical sessions are offered as part of the charitable service with the option to buy further ones.

Any one person might interact in more than one way. A relative might make an in mem donation but also choose to pay for bereavement counselling. 

db associates is currently producing a visual that aims to explain this spectrum in more detail. Just contact me if you want a copy. 

It may surprise people to learn that back in the 1960’s Dame Cicely Saunders wrote, when considering the funding of a hospice, that ‘there are many people who would pay £12 a week or so for their relations to be cared for.'

Costs have risen somewhat since then. But if the founder of the modern hospice movement could consider this option, perhaps we need to be open to radical thinking some seventy years later?