All’s well that ends well

Becky Hirst worries about how patients and health professionals view her specialty. ‘It’s a public health problem that so many  people don’t understand what we do.’

Palliative care can transform the last days and even years for someone with a terminal illness. It can relieve the burden on families – and on other parts of the health system.

If a patient is referred in good time to palliative care, they and their family have a support system and plans in place to make the most of life while it lasts and hopefully have a good death when it comes.

Yet, despite the fact up to 90 per cent of all people dying in England may need generalist palliative care and support, fewer than half receive it, according to the charity Sue Ryder. The picture is repeated across the UK.

Dr Hirst and the multidisciplinary team at St Luke’s Hospice provide specialist support to terminally ill adults with needs that cannot be met by other healthcare teams, in their homes and in the hospice. She sees their role as protecting patients from unnecessary interventions and medication, managing their symptoms and enabling them to live well for as long as possible.

‘Everybody with advanced progressive life-limiting disease deserves palliative care,’ says Dr Hirst, ‘but people don’t realise how important it is until they or someone they love needs it.’

The barriers preventing people from receiving specialist palliative care are many and complex.

The Government says it’s committed to ‘high-quality palliative care’: local integrated care boards have a statutory responsibility to commission it. But pledges have not translated into funding.

Only 11 per cent of hospital trusts offer face-to-face access to specialist palliative care 24/7, according to the Royal College of Physicians. The eligibility bar to receiving care at home through the NHS in England and Wales is high.

Hospices, which offer free care to 300,000 people a year across the UK, have to fundraise two-thirds of their income on average – and are struggling financially. And, as Dr Hirst points out, hospices tend to be in ‘leafy suburbs’. The hospice where she worked previously was two bus rides away from the former mining communities it served, where palliative care needs were higher.

Dr Hirst is also deputy training programme director for palliative medicine in Yorkshire and Humber. She is concerned the specialty’s new training pathway, introduced in 2022, may make workforce shortages worse.

Trainees are now required to be dually accredited in palliative and internal medicine: Dr Hirst’s experience as a former GP would no longer be eligible. Filling higher specialty training posts has become much harder. ‘My perception is that the people who want to do palliative medicine are not always the people who want to be on an acute receiving rota.’

Outside the profession, palliative care lacks the political impetus and lay advocates for improvement that other specialties have, she fears. ‘The dead can’t complain and the bereaved are often not in a place to complain either.’

More pressing for Dr Hirst is the fact palliative care is not widely understood, even by clinicians. Hospices are commonly seen as ‘just for cancer’: palliative care is mistakenly associated with the very last days of life. Consequently, referrals don’t happen – or come late.

Dr Hirst recognises it can be hard to assess when patients are nearing death, especially those with non-malignant conditions such as heart failure who may come close to dying many times.

‘But we know if you’ve had a certain number of exacerbations in a certain amount of time, you’re more likely to die from the next one,’ says Dr Hirst. ‘So why aren’t we having some advance care planning conversations with these people to find out what they would want? I can only help with the patients that I know about.’

Meanwhile, the need for palliative care is growing. ‘All specialties are keeping patients alive for longer but people have lower functional ability and we’re seeing more chronically dying patients.’

Society in general and clinicians in particular must overcome their ‘squeamishness’ over talking about death and dying, Dr Hirst says, to allow  other specialties to work in a more collaborative fashion with palliative care from earlier in the patient’s journey.

‘Death isn’t going to happen any quicker just by talking about it. The evidence is that patients want to talk about end of life but they want their doctors to bring the subject up: that gives them permission to talk and tells them it’s safe.’

One of the great strengths of palliative care – and one of its great rewards for Dr Hirst – is having the time to talk to patients properly, especially about what matters to them.

She is a strong advocate of these ‘tender conversations’ – a phrase coined by palliative medicine specialist Dr Kathryn Mannix – effective, empathetic conversations which confront hard truths and explore positive ways forward. They’re what enable a young woman with terminal cancer to marry her fiancé or a wife to lie with her husband and hold him as he dies.

‘Often, it’s the first opportunity they’ve had to tell their whole story, from the beginning. Spending longer with patients in the first instance and setting them up with a good plan reduces the amount they’ll need to access services longer term. We forget that time is a therapeutic tool.’

Dr Hirst rarely feels upset by her work: she’s part of a strong, supportive team and their work is positive and productive, even amid so much loss.  When people ask her how she copes, she tells them she found general practice in Glasgow harder: ‘You were powerless to do anything about poor housing, abusive relationships, poverty.’

In contrast, she says: ‘In palliative care, once you’ve treated physical symptoms so people are feeling better, you look at their goals and what’s achievable. It may just be getting out into the garden because part of their spirituality is being a gardener. There’s always something I can do to make a difference. And there’s always hope: it’s just that we have to change what we hope for, until the hope is of a dignified death in the place of our choosing. One hundred per cent of us are going to die so let’s make sure we do that well.’ 

The specialist palliative care team where Jamilla Hussain works has always had close working relationships with other teams in the Trust.

But during COVID, the need for palliative care rose sharply, as did awareness of what the team could offer.

‘With so many people dying, it pushed palliative care into the limelight,’ says Dr Hussain. ‘The team in Bradford was innovative and stepped forward to help, allowing people to see the value of palliative care in a way that had not been appreciated before. They were not only having to support patients and family members but staff too, at all levels.’

Since then, the hospital palliative care team has grown to include three consultants, specialist healthcare support workers and more specialist nurses, recognising the growing need for specialist palliative care support in hospital.

Their role is to provide patients and their families with dignified, compassionate care that extends beyond medical needs into psychological, spiritual and social aspects of their life too.

The hospital-based palliative care team also see it as their job to support colleagues in other specialties. Now, as soon as any team suspects a patient may be nearing the end of life, they can refer them to the palliative team for assessment. The number of patients receiving specialist input has increased as a result. The palliative care team also now has a team working across emergency departments, the community and hospice, covering everything from advance care planning with patients to setting up support for them going home.

‘We’ve got to recognise every team in the hospital and community have got their own challenges and they’re doing the best they can to support people at the end of their lives,’ says Dr Hussain. ‘They’re, however, working with a broader spectrum of patients, including those with many years to live, and therefore require different expertise. We need to understand better how to support those teams and how palliative-care services can best work alongside them to deliver equitable end-of-life care to all.’

In many ways, Bradford NHS trust is tackling many of the barriers that Dr Hirst in Sheffield is concerned about.

It is a minority of trusts that offer 24/7 access to specialist palliative care. The local hospice is in an economically deprived area. And most of the patients referred to palliative care have the kind of non-cancer conditions such as lung disease that are prevalent among more disadvantaged groups.

The palliative care consultants working across Bradford rotate between hospital, hospice and community roles, giving them ownership of other areas of the team’s work and a broader awareness of need. Yet access to palliative care is still low among certain groups. For example, in 2016-17, people of South Asian heritage in Bradford only made up 8 per cent of referrals to specialist palliative care services, despite making up 47 per cent of the population, according to the charity Hospice UK. These inequalities are writ large across all minority communities, from the homeless to trans people, says Dr Hussain.

She combines her clinical role at the trust with a research post where her focus is trying to address inequalities in end-of-life care. There’s a strong focus on enabling community members to contribute to that research: a recent project helped create safe spaces where Muslim Pakistani women could share their experiences of caring, dying and bereavement.

Dr Hussain, who is of Pakistani heritage herself, points out that equating ‘a good death’ too narrowly with end-of-life care at home is unhelpful at times, especially for people and families who are marginalised. Some homes are too small for the equipment often required for end-of-life care, she says; some people are socially isolated and some choose hospital as their preferred place to die.

‘Our patients with, say, end-stage renal failure or COPD, who have been in and out of hospital for many years, have often developed a good relationship with the nurses and feel safe and well supported in hospital.’

It’s important then that hospital care is flexible and sensitive to families’ needs and values.

‘Very often, when a [South Asian] patient is asked what matters most to them when they’re dying and they can’t get home, they will say: “I want all my family,” and we’ve got big families. When you’ve got lots of visitors, managing infection control may be highlighted as a concern by the ward team but it’s also important for our team to challenge unnecessary barriers.’

It requires tact and sensitivity – as well as representation in the workforce – to understand family dynamics and how these inform a family’s response to the offer of palliative care.

If a South Asian woman involves her husband and son in decision-making, says Dr Hussain, ‘that isn’t necessarily a way of reducing her power, but can be a way of making sure she’s protected’. Likewise, allowing a woman her say in whether she feels up to caring for a loved one at home is important, even if male relatives have said that the family can cope.

And it takes determination to find out what matters most to families and may require some soul-searching too.

‘In the drive to address health inequalities, many organisations have focused on asking communities, “Tell us what you want.” What we’re not doing as much is turning the lamp on ourselves and saying: “What are the structures and systems that stop us doing things differently? What stops us having representation at leadership level?”

However, Dr Hussain has come to understand why doing such work is hard. ‘I don’t have implicit knowledge of the experiences of trans people, for example, but I know they’re hugely marginalised. I will make mistakes, in my language and my approach to try to support equity for this group. But it’s my responsibility to push myself to learn more. We have to care enough to go that bit further to understand what people need and try to do better, even if it is unfamiliar and uncomfortable territory.’