This time last week, I was sitting in the grand surroundings of the Royal College of Nursing (RCN)’s London headquarters for a fascinating joint event with Marie Curie on end-of-life care. I was pleased to be wearing both my hats at the same time. Usually, I have to juggle them day by day throughout the week—and that’s often difficult.
The two hats? Writing this column for Prospect and being one of the Movers and Shakers—not only the podcast about Parkinson’s but also a campaign for better care which seems to have taken over large parts of my life.
I was there as a guest speaker, both because I write here about assisted dying and because I have Parkinson’s. So the whole business of palliative care and assisted dying is rather more personal to me than it is to many others.
One of the first things I did was make sure everybody had seen the QR code or could click on and sign parkypetition.com so we can have a full debate in parliament on Parkinson’s. This is in part a shameless piece of self-promotion, but it is also relevant to the debate about assisted dying.
For the link to the petition comes complete with a map I’ve become rather obsessed with. It shows exactly which areas—in terms of parliamentary constituencies—have the most signatures. It updates automatically.
What it revealed, almost at first glance, is that the prosperous south coast has the most signatures. Inner city areas in London, Birmingham, Bradford and Leeds have the fewest in England.
That made me think. Bradford, Birmingham and inner London aren’t just poorer areas—they are also areas with large ethnic minority populations. That worried me. Not just because they weren’t signing—but because people in those communities presumably don’t get the benefit of the kind of expertise that Parkinson’s care can bring.
I can’t say why. Maybe people in those constituencies aren’t getting the information the various charities push out more generally.
What on earth has this got to do with assisted dying, you ask? Or end-of-life care?
Well, everything, really. It struck me a long time ago that we ought to be doing more work on the attitudes of ethnic minorities to these questions. It’s a subject that’s too often paid lip service or ignored altogether.
The RCN conference definitely put an emphasis on changing this. So I spoke to three of the main speakers that afternoon. The first was Rekha Vijayshankar, deputy head of Quality and Clinical Governance at Marie Curie as well as a Queen’s nurse and a Churchill fellow. She told me that the concept of what makes a good death varies between cultures.
“I think our understanding of death and dying—and of what constitutes a good death—is quite an Anglophone understanding,” she said. “It places great importance on individual autonomy: control, decision-making, personal preferences and values.
“But for the vast majority of global majority populations—communities with more collectivist traditions—decision-making takes a different form. In these contexts, individual choice takes a back seat to communal, familial or collective decision-making. So autonomy, in the sense we often mean it, simply isn’t as central. That’s likely because these communities have a much longer historical presence on the planet than we do. They come from ancient civilisations with deeply rooted systems for handling death, dying and loss. These are expressed through spiritual, religious and cultural frameworks that help integrate loss into daily life.
“A good example is the way grief is experienced. In Anglophone cultures, grief is something we work through—an emotional state to be processed. But in many global majority communities, there’s often no word for ‘grief’ as such. Instead, there are words like sorrow, pain and loss—but these aren’t problems to solve. They are ever-present, sitting at the table with you. And they’re integrated into life through ritual, religious practices, sanctification and continuing bonds.”
This is undoubtably true, although it rather disturbed me in the way it seemed to lump people with greatly different histories, religions and geography together (more on that in a moment). Butt it did make me want to seek out people with individual experience of the communities involved. One such was Rohit Sagoo, who’s the founder and director of British Sikh Nurses. He’s been a nurse for 26 years, and tells me that one of the key tenets of Sikhism is seva, or selfless service. He saw an opportunity to give back to his community in setting up a table at the gurdwara (Sikh temple) with a blood pressure machine, where he took readings.
“That small act spiralled. We were contacted by the Department of Health and Social Care and started working with NHS Blood and Transplant, helping raise awareness around organ donation. During Covid-19, we worked to dispel vaccine myths and promote hand-washing and public health guidance.
“So far, we’ve screened over 6,000 people in the Sikh community. We found that about 60 per cent are walking around with undiagnosed hypertension. That’s a major health inequality. We’ve raised that issue at government level.
“We’ve also supported nine families looking for living kidney or stem cell donors. And we support around 120 internationally educated nurses—many Sikh, but also from other faiths—with pastoral care, professional development, interview preparation and OSCE training.
“Another strand of our work is with Resuscitation Council UK, teaching bystander CPR to Sikh communities. We’ve trained around 500 to 600 participants over the past few years. So yes, it’s been a wonderful labour of love, and it continues.”
I asked Sagoo: what is the Sikh attitude towards death?
“In Sikhism, we view death as a transition,” he said. “The body is just a vessel—the soul continues its journey. We believe death is governed by Waheguru—God—and that we shouldn't interfere with divine will.
“It’s very much rooted in scripture. If our death is already written, then that’s how it’s going to unfold. So when we talk about things like assisted dying it becomes a very difficult conversation, because it seems to go against what’s already written.
“We also talk about kismet, or destiny. Life’s journey includes hardship, and death is one of those hardships we all face. The idea is to walk through that journey rather than cut it short.”
I asked if this meant any Sikh would be opposed to assisted dying.
“From a Sikh perspective—my own included—I would say yes, it can be seen as disrupting the soul’s journey,” he said. “If we intervene in the process of dying, there may be spiritual consequences.
“But speaking as a nurse, I also see the reality of pain and suffering, and I understand the importance of compassion. So there’s a tension between theological doctrine and the humane response to suffering. That’s where the debate lies: do we let Waheguru’s will unfold, or do we say, ‘I cannot suffer anymore’?
It’s a conversation the Sikh community hasn’t really had. Or if they have, it hasn’t been very open. There’s a lot of stigma around death. It’s often a shut-down subject.”
Next I spoke to Olajumoke Isaiah, who is a member of the Royal College of Nursing Pain and Palliative Care Forum, and also leads the palliative and end-of-life care team from the RCN’s Pain and Palliative Care forum.
“For people from ethnic minority backgrounds, it’s important to recognise they’re often marginalised—sometimes because of language barriers, sometimes because of a lack of understanding of the health system, and sometimes due to stereotyping and assumptions about particular groups,” she told me.
“We have to move away from generalisations and ask: what is important to this individual?”
So I put it to Vijayshankar that her “global south” label rather ignored the rich diversity that makes up modern Britain.
“There’s vast diversity—cultural, religious, economic, political—and different hierarchies of power and intracultural stigma,” she responded. “But they do all share something in common: a legacy of colonialism, which has often resulted in resource poverty and marginalisation. They are now labelled as ‘developing nations’, but that label hides a long, rich past.”
And, I asked, doesn’t the immigrant experience itself mean a constant flux of identity and so shifting attitudes?
It depends on who you ask, she said. “For example, older generations—from Nigeria, Jamaica, Pakistan or Gujarat—may carry deep intercultural stigma around certain illnesses. In some south Asian languages, dementia is translated as ‘madness’. That stigma contributes to late disclosure and delayed access to care, often long after curative treatments are possible. There can also be a belief in miracle cures—whether from spiritual healers or occult practices—which complicates engagement with formal health systems.
“These older generations, including those from the Windrush era or immigrants from east Africa in the 1960s, may carry disenfranchised grief—grief that’s not acknowledged or supported within the dominant culture. This sits uncomfortably alongside a colonised mentality of ‘the west knows best’. As a result, death and dying often aren’t talked about openly, especially not with professionals. These conversations may still happen—but privately, within families. That’s why rates of advance care planning are so low among minoritised populations. It’s not that people haven’t thought about it; they’ve just done it in their own way. And that way is just as valid.”
That does raise the question, once again, of how health professionals can reach into these communities.
Isaiah is clear: “Communication. That’s the first thing—empathetic, sensitive communication about what’s important to them, in a language they understand. Just because someone doesn’t speak English doesn’t mean they don’t have the right to understand or to be part of the conversation. If they need to speak in another language, are we providing the right translation method? That way, we can ask what’s important to them, and tailor their care accordingly.”
I am hearing more and more the view that assisted dying could further undermine trust in the NHS among people who have little trust anyway in the medical profession. It concerns me, but I worry if we accept it as a reason to reject the bill it has huge implications. After all, politicians are very widely distrusted—does that mean MPs shouldn’t pass any new laws until that is fixed, because any new legislation could further undermine that trust?
So I asked my interviewees: where does all this leave the debate on assisted dying?
Vijayshankar tells me: “It’s complex—particularly because individual autonomy, again, isn’t the dominant lens. From what I’ve learned, people from these communities tend to focus more on quality of life than on the right to end life. The logic of ‘my life is no longer worth living, so I should end it’ doesn’t always resonate. And yes, the idea of being a burden may exist—but it’s shaped by different moral frameworks.
“Filial piety—duty to one’s elders—is a core virtue. During my Churchill Fellowship in India, I saw that clearly. In Kerala, palliative care is owned entirely by local neighbourhoods. Communities contribute what they can into a shared fund that pays for nurses and doctors. That happens because people feel accountable for each other.
“I remember meeting young people with spinal injuries being cared for entirely by their families. One father, who had very little formal education, said to me: ‘Why should I depend on anyone else? He’s my son. If I don’t care for him, who will?’ That sense of responsibility was deeply moving—and deeply instructive.”
Isaiah said: “At the Royal College of Nursing we have a neutral position, and I do personally as well. But I think it’s important to say that assisted dying needs to be part of a broader conversation—not just in parliament, but with the people it affects. We need to understand what good end-of-life care looks like, first and foremost… The real question is: are we giving people the basics first, before they’re even thinking about assisted dying?
Sagoo told me his organisation is neither for nor against assisted dying—but for education. “There’s a lot of resistance. But I believe there’s also room for discussion. Not just about assisted dying—but about death in general. Talking about what death means, what our soul’s journey is, and how we prepare for it, is deeply enriching. That’s the real starting point.”
