What do hospice patients think about assisted dying?


A journalist's visit to St Christopher's Hospice in London reveals diverse perspectives on assisted dying among patients and staff, highlighting the complexities of end-of-life care within the context of a proposed Assisted Dying Bill.
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Ann-Margaret Frank Tate-Sutton is, in her own words, “waiting to die”. Nevertheless, she carefully applies her lipstick before posing for photographs amid the blazing autumn colours of the neat hospice garden. “Just because you’re dying, it doesn’t mean you can’t be amazing,” she says.

The 53-year-old has stage 4 liver disease. She is one of 1,800 people under the care of St Christopher’s Hospice in Sydenham, south London. Aged from 20 to 112, all have been diagnosed with a life-limiting illness. None knows exactly when death may come — but that could change. If the Assisted Dying Bill passes next week, some will be able to decide exactly when and how their life will end.

The health secretary, Wes Streeting, thinks that’s no choice at all. “I do not think that palliative care, end-of-life care, in this country is in a condition yet where we are giving people the freedom to choose,” he said last month. This is a key point in the assisted dying debate: if the only alternative facing the terminally ill is neglect from a broken system, thousands may end up opting for a state-sanctioned early death.

Ann-Margaret Frank Tate-Sutton at St Christopher’s Hospice, Sydenham

LUCY YOUNG FOR THE SUNDAY TIMES

So is Streeting right? Much of the UK’s end-of-life care is managed by hospices, which receive just a third of their funding from the NHS. The rest comes from donations and charity shop profits. In effect, the care we receive in our last days relies on the market for second-hand cardigans. On paper it doesn’t seem an ideal system, but does it work? I went to one of the biggest hospices to find out.

With 475 staff (about half of them clinicians) and 1,200 volunteers, St Christopher’s is quite an operation. It needs to be. Last year it admitted 650 inpatients and carried out 15,000 visits — much of its care is delivered in patients’ own homes, where most of us prefer to die if possible.

Helen King is the nurse consultant who runs that home care, including a 24-hour urgent response team. The goal, she says, is “living well right to the end, and having a good end”. And how often do her patients achieve a comfortable death? “I’m not going to put a number on it, but I think … more often than not.”

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The hospice itself is carefully neutral on the bill, but King’s personal view is firmly against. “I assist people to die every day, just not the sort of assistance the bill is asking for. If a person is saying, ‘I really want to end it’, would I feel compassionately that’s the right thing for them? I don’t know, because people change their views. We see that so often.”

Andy and Danni Ratcliffe. Danni died at St Christopher’s aged 45

Andy Ratcliffe might agree. His wife, Danni, had ovarian cancer and died as an inpatient at St Christopher’s in September. She was 45. Returning here to speak to me, he is overcome with emotion, but determined to tell their story.

“When she was admitted, Danni wanted to be calm, to be pain-free, and to have a last moment in nature. It was calm, and we got to pain-free with the medicines,” he says, referring to the carefully balanced cocktail of drugs the hospice’s experts tailor to each patient. As for nature, “We loved to swim in the lake at Beckenham Place Park. I didn’t think it would be remotely possible to do that again, but they made it happen.”

The hospice organised an expedition, complete with staff and lifeguards, and two and a half weeks before Danni’s death the couple floated in the sunshine one last time.

At this point, Ratcliffe struggles to speak. “It was one of the most beautiful moments in our 23 years together,” he says eventually. “And it made me think: there had definitely been points before where Danni wanted to die. The pain can be so bad along the way, and it’s scary. But we would have missed that amazing, amazing moment in our life together.” Her death, he says, was peaceful.

The hospice enabled the Ratcliffes to have a last swim at Beckenham Place Park

Ratcliffe speaks with awed gratitude of the expert care and sheer kindness he has found at St Christopher’s. In fact, everyone does. “Before I came, I was in and out of hospital and it was a horrible, horrible life,” says Tate-Sutton, who is an outpatient. A stylish woman, she cuts something of a dash as we speak in the bright, busy café. The public areas of the hospice are, perhaps counterintuitively, warm and lively. “I can’t express what a difference this place has made. I’d like to die at home because of my animals” — she has two dogs and a cat — “and St Christopher’s will make that happen. So I have no real worries, other than dying. And I don’t want to go yet.”

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At another table, Dennis and Constance Bartholomew are enjoying lunch — fish and chips for him, pasta for her. Constance, 69, has progressive supranuclear palsy and communicates with a thumbs-up or down. Dennis, 71, speaks for her, choosing his words with care. “I harboured an impression of this place as a cross between Bedlam and the workhouse. But as soon as we came in it was a Damascene conversion. They should move away from calling it a hospice: it’s a wellness centre. There’s massage, gym, music therapy … Constance and I are agreed that we will try to live a full life, not be defeated or depressed by this disease. This place has been a great help in strengthening that.”

Constance Bartholomew, 69, centre, with her husband, Dennis, 71, and Constance’s cousin Yvette Fowles, 68

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Given how highly the patients value their hospice care, you might think the state would get behind it. But the NHS funding St Christopher’s does receive towards its £28 million budget is being cut in real terms.

There is also a suggestion that introducing assisted dying would damage hospices. Last week a study from the Anscombe Bioethics Centre in Oxford found that palliative care has deteriorated in countries that have passed similar laws, with hospices and assisted dying services competing for funding.

Most patients and staff I speak to are ambivalent on the new law — and for many it will not be personally relevant anyway. Out with the community team, we collect an Advanced Decision to Refuse Treatment form from a patient with motor neurone disease: he has a powerful wish to live but, should he succumb to dementia or be unable to communicate, “I regard continuing beyond these two points to be silly, frankly”. For him and thousands of others, simply refusing treatment (such as a ventilator) would be rapidly fatal: and they already have the right to do so, with protocols in place for drugs to ease their death.

Staff at St Christopher’s, from left, Saida Senouci (staff nurse), Bernie Moloney (ward administrator), Ellen Cashman (deputy ward manager), Gillian Bahari (health care assistant), Gemma Sarre (clinical fellow) and Joy (deputy ward manager)

LUCY YOUNG FOR THE SUNDAY TIMES

In practical terms, the clinical staff tell me, most other patients would fall outside the scope of the bill too. They may be unable to self-administer the drugs as required, or death itself may come before the legal process can be completed. The average inpatient stay is two to three weeks, but dying is, they point out, an unpredictable process: anticipate a final moment, and you may be surprised by recovery, and vice versa.

Many of us simply fear the final days will drag on longer than is kind — something I know from my own mother’s death. “I don’t think the bill will help those people,” says King. “By the time it’s gone on too long we aren’t capable of saying, ‘I want out now’; and anyway the legal process will take weeks.” The bill requires seven days between doctors’ assessments, plus a 14-day cooling off period after a judge’s approval.

Humane thoughtfulness is everywhere you look at St Christopher’s. It is in healthcare assistants such as Gillian Bahari, who speaks emotionally of the “privilege” of her work — she folds the towels into swan shapes, cruise ship-style, to give scared new patients something novel to focus on when they enter. And in the nurse who, finding an ailing outpatient with no food, bought him a day’s supplies with her own money from the corner shop, before arranging a food bank delivery for the next day.

Gillian Bahari shapes the towels at the hospice into swans to put new patients at ease

LUCY YOUNG FOR THE SUNDAY TIMES

Beyond the hospice’s control, though, the lack of care Streeting worries about of is all too evident when I sit in on two case reviews. In both, the outpatient was in a care home and their carefully considered “Do not resuscitate” orders were ignored because of poor communication between inexperienced staff and the ambulance service. In one, attempts to resuscitate continued for an hour: a well-intentioned but pointless and possibly agonising effort to prolong a life that had naturally ended. The case nurse fights back tears as she relates the story. If Streeting wants better end-of-life care, such widespread mistakes might be a place to start.

In my two days and many conversations at St Christopher’s, I only met one patient who wanted to die. Most were focused on living, enabled by the expertise and compassion the hospice provides. I came with my own firm view on assisted dying. When I left, I was no longer so sure.

Death had seemed a linear process, and ensuring a good one seemed a simple decision. What I found was more unpredictable, nuanced and complex — more complex, perhaps, than the short bill can allow for. But two things I am sure of: when my time comes, I’m calling my local hospice; and this Christmas I’m buying all my presents from its shop. You can’t have too many cardigans.

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