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FOCUS: “People have a reluctance to talk about death – no matter how that takes place"

FOCUS: “People have a reluctance to talk about death – no matter how that takes place

Monday 20 May 2024

FOCUS: “People have a reluctance to talk about death – no matter how that takes place"

Monday 20 May 2024


Ahead of tomorrow's landmark States Assembly vote on assisted dying, the head of Jersey Hospice Care has opened up about the charity's position on the matter, the individual nature of palliative care, and why people need to become more comfortable talking about death.

“People generally – and this is one of the things we're trying to change – have a reluctance to talk about death full stop, no matter how that death takes place," CEO Mike Palfreman explained.

“I think one of our roles we can fulfil in future is to encourage greater conversations: that people, and particularly relatives, do talk to each other about what sort of death they would want, so that relatives and family are aware when the time comes – and it is an open conversation.

“It is difficult, but we all need to know.  

“I need my relatives to know how I would like to die when the time comes. And I need to know how my relatives and my mum would like to die when the time comes.” 

"It's for the Jersey population and for the Government to make that decision"

When Mr Palfreman joined Jersey Hospice Care three years ago, the charity was already aware of the conversations taking place around assisted dying with an awareness that “Jersey was likely to be at the forefront of whatever discussions were had were happening across the British Isles”. 

The view in the UK hospice sector is that it is not their role to influence the debate – a standpoint that Jersey Hospice Care has adopted too. 

Mr Palfreman explained: “At the end of the day, I think it’s for the Jersey population and for the Government to make that decision.

"As a hospice, we will then work with whatever that decision is.”

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Pictured: Mike Palfreman speaking at the launch of the Palliative Care and End-of-Life Care Strategy last year. (Dave Ferguson)

While it therefore hasn't taken a vocal role in the debate, Hospice did quietly publish a position statement in April, explaining that it supported the position of the European Association of Palliative Care, which has for the past 50 years said that assisted dying “shall not be included in the practice of palliative care”.

"Open and honest debate" welcome

The charity said, however, that it does welcome “an open and honest debate on all aspects of care" for people who are ill or dying.

"We believe it is important to talk about access to good and well-resourced palliative care and are encouraged by the dialogue and commitment to providing islanders with the best palliative care and end of life services," the statement said.

It further noted: "We actively support dedicated professionals providing palliative care in care homes, the hospital and in the community. We support and encourage investment in education and care through the whole healthcare system that alleviates suffering, promotes listening and communication, through skilled, evidence-based interventions, meeting the personal, physical, emotional, and spiritual needs of the person."

People need to know “they have a real choice in the matter", Mr Palfreman reflected.

"We think that goes against the whole ethos of hospice" 

While the charity had been "fully engaged" in the consultation process, and kept in close contact with Government on the matter of assisted dying, Mr Palfreman was clear that, were it to be implemented in Jersey, Jersey Hospice would not be involved in delivering assisted dying.

“We think that goes against the whole ethos of Hospice, the hospice movement and hospice care," he said.

“Precisely how that will or won’t work, we don’t know until the legislation is passed.

“What we do know is that whether the legislation is passed or not, we will continue to be here to offer the best possible palliative care to every islander.” 

Mr Palfreman explained that the charity would support Hospice patients who might choose the assisted dying route, but wouldn’t be delivering it on-site. 

“If the legislation is passed, we will continue to offer that palliative care even to those who may choose assisted dying," he said.

"But what we will not be doing it is delivering it within Hospice."

Mr Palfreman continued: “It's difficult to say at the moment, but if a patient comes into Hospice and was with us and then says they would like assisted dying, we will, I imagine, try to find a way to help them implement their choice, but it won't be happening in Hospice. 

“How we do that, it's difficult to say until if the legislation is passed.

“I think it’s very important that we will not be part of the actual end delivery process.” 

“Palliative care is about looking at every individual as an individual” 

The debate around assisted dying is incredibly complex, and Mr Palfreman continues to find more perspectives on the debate. 

One of the points he highlights is the level of safeguarding that needs to be in place – which need to be “robust enough to ensure that vulnerable people are not placed in a position they should not be placed in". 

“That is a really difficult one, because can one ever produce 100% robust safeguards?” he asked.

Safeguards must ensure that every option is considered and people know what end-of-life care options are available to them, according to Mr Palfreman. 

The palliative care options – which the Hospice offers on-site, with some of the best views over St Aubin’s Bay, or at home – take into account both the physical pain, but also emotional and spiritual needs of patients. 

Mr Palfreman explained: “Palliative care is about looking at every individual as an individual.”

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Pictured: Jersey Hospice Care's inpatient rooms allow access to the garden and overlook St Aubin's Bay

A multi-faith spiritual lead helps provide spiritual care, regardless of which faith the patient is part of, if any.

But, he explains, medical intervention “can do a lot, but it can’t always take away all pain”. 

Jersey Hospice Care also offers bereavement counselling to any islander of any age, whether their loved one has been to Hospice or not. 

This would, in a hypothetical future, also be available to those whose loved one chose the assisted dying route. 

An island strategy for end-of-life care

Jersey Hospice Care was brought on board by Government to add their input to the Palliative Care and End-of-Life Strategy, launched in October 2023. 

This was produced in the context of a rapidly-ageing population, Mr Palfreman explained.

“It was the island's first-ever palliative and end of life care strategy," he said.

“And it really was saying, we need to work together to achieve this, because the needs are going to be growing.

"What we've got at the moment is very good, but actually with the needs growing and the fact that not everyone at the moment can die at home, if that's what they so choose, more needs to be done, individually and collaboratively.  

“I think we and Government and other partners across the island, as a result of that strategy, are now sitting down and talking to each other and working out what further gaps are there and what more we can do to ensure that the system the whole service is really comprehensive and meets all the needs that are out there.” 

This has underpinned the need for quality palliative-care provision – and on the back of that, the Government committed to putting more money towards the growth of end-of-life care services. 

The charity has faced financial stress in the past few years, Mr Palfreman explained.

“What we don't want to do is start services and find that because of a lack of funding or whatever it may be, we have to stop them," he added.

Complex questions for States Members 

With next week’s States debate on assisted dying looming, “a small number” of States members have spoken to Mr Palfreman – on both sides of the debate. 

And with such a complex discussion likely to take place, he hoped that members explore the topic in depth before the debate. 

“My understanding is, there’s going to be more than one day’s debate on next week – and so it should be," he said.

“I just hope everyone has the chance to really air their thoughts and to try to understand all the complexities before that decision is made.” 

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