SAs he lay at his wife’s bedside, Len was grateful that she was under the care of end-of-life experts in her final days. In the softly lit, quiet room, he was able to spend as much time as possible with Adela, spending the night on a pull-out bed if he wished, while awaiting her inevitable relief from cancer.
“In July we were told the chemo was no longer working and her life was now limited,” he said. At home, Adela had ‘become weaker and weaker’ and could no longer climb the stairs to the bathroom. It was eventually suggested that she be admitted to St. Joseph’s hospice in Hackney, east London.
Neither had been in hospice care before. Despite the circumstances, Len felt comfortable with their decision. “Honestly, it’s like being in the best private hospital,” he said. “She is getting the best possible care.”
The role of hospices like St. Joseph’s has become an important part of the debate over whether to legalize assisted dying. MPs will vote on a private members bill later this month. If the bill is passed, there will be a lengthy process through Parliament before it can become law.
It is a highly charged debate, with strong positions on both sides and intense lobbying of MPs – who will vote according to conscience – by campaigners. One of the main arguments of opponents is that the state should pump more money into services that provide end-of-life care, instead of sanctioning euthanasia. Some MPs have called for a palliative care committee.
Supporters of assisted dying say people with terminal illnesses should be given a choice about when and how they die, and that a change in the law should go hand in hand with greater investment in palliative care. It’s not either-or, they say.
This is reported by Hospice UKIn 2022-2023, approximately 300,000 people received palliative and end-of-life care in the country’s more than 200 hospices. It costs £1.6 billion a year to run, but only £500 million comes from the government. The remaining £1.1 billion will be raised through donations, bequests, charity shops and other fundraising activities.
One in five hospices have been forced to cut services in the past year or are planning to do so. the charity said in July. Some close beds and make staff redundant.
Many see hospices as a place where people go to die. Rather, says Jane Naismith, the interim principal of St Joseph’s, they are “somewhere you go to live.” Hospice care is life-affirming. It’s about supporting people to achieve their goals for as long as possible.”
St Joseph’s, a 120-year-old Catholic institution, has 34 beds, all in individual rooms on two wards, staffed by end-of-life care experts. It also provides community care and day services including a range of therapies, counseling and social activities in a bright and welcoming environment. Practical advice, for example about debts or benefits, and bereavement support are available.
“The idea that once you walk through the doors of a hospice you never leave has faded,” said Zenab Ali, the hospice’s day manager. “People come in one day a week and build a relationship with the staff and become familiar with the hospice, long before they may need to be admitted.”
Naismith said: “We do care for people at the end of their lives, but it is only a small part of what we do. Hospice care is provided in various locations: at someone’s home, in a hospital, in a nursing home.”
Palliative care is about giving people support and information to help them through the end of life, she said. “High quality palliative care should undoubtedly be available to everyone.”
But financing is an ongoing challenge. St Joseph’s, which covers some of east London’s most deprived areas, costs around £14 million a year to run its free services. Half must be collected by the hospice itself.
Naismith said: “The state should undoubtedly provide more funding for palliative care. If maternity care was funded by charity shops and bakeries, what would people think? I have trouble telling the difference.”
Hospice UK has a neutral attitude towards assisted dyingbut says that “everyone should have access to high-quality palliative and end-of-life care, regardless of who they are, where they are or why they are ill.”
A statement on the Sint-Jozef website says: “As a Catholic hospice, our position is that assisted dying has no role in our specialist palliative care practice and is not consistent with our ethos or values. We neither hasten death nor delay it. We cherish life, but also embrace natural death when it comes.”
Naismith said a “social change” was needed in attitudes to death and dying, and a “bigger conversation” was needed about the quality of end-of-life care. “The experience of dying is unique. People may want different things – some may want to be alert until the end, others may prefer to be sleepy.
“We can’t guarantee anything 100%, but we do everything we can to relieve pain and discomfort, and we do it with great expertise every day. I don’t see people dying of pain and fear in this hospice.”
Names have been changed