Nurse working to make palliative care more equitable

In many instances, staff shortages and overstretched services prevent patients and their carers from receiving the high-quality and dignified care they deserve.

“We have training in unconscious bias, but that in itself is inadequate”

Rekha Vijayshankar

Earlier this year, the Queen’s Nursing Institute and end-of-life charity Marie Curie spotlighted these issues in a report, which looked at how far palliative and end-of-life care had come in the last 70 years and what changes were needed to ensure equitable care in the future.

The findings were that end-of-life care had “not kept pace” over the last seven decades, and that services continued to be severely impacted by social and economic challenges seen in the 1950s.

Nurses reported that they were unable to meet patient or carer needs, often because they lacked time to provide holistic care in the way they wanted.

This, coupled with the fact that many nurses are not educated in meeting the specific palliative care needs of the different diverse populations they serve, means that patients and their loved ones are frequently left to carry the burden.

For one individual, it was her personal experience of inequity in palliative care that inspired her to change the status quo.

After being let down by health professionals at a time when she needed their support the most, Rekha Vijayshankar decided to switch careers and become a nurse.

Ms Vijayshankar, now an experienced palliative care nurse and health visitor, has been championing equitable palliative and end-of-life care for some of the most marginalised and minoritised communities living in London for almost a decade.

Currently, she works as deputy head of quality and clinical governance at Marie Curie, where she ensures palliative and end-of-life services are of a good standard in London.

As part of her role, she has undertaken research into the lived experience of palliative care among people living “with the most socioeconomic deprivation”, to try to understand what their needs are and where services might be falling short.

Ms Vijayshankar told Nursing Times: “I find that there’s a lot of research in palliative care provision, advanced care planning or even bereavement support, but that it is all really targeted to [a] White, middle-class population.”

She said, while this research “has relevance and is important”, she wanted to find out more about the experiences of people from other demographics.

In one study, which concluded last year, Ms Vijayshankar spoke to 185 participants who came from some of the most diverse backgrounds in the capital, including the boating community who inhabit London’s canals, the LGBTQ+ community and many individuals from minority ethnic backgrounds.

“There’s a reason why they’re called hard to reach [communities], because it’s very difficult to make inroads to them,” she explained.

However, once Ms Vijayshankar was able to make contact with them, and identify their palliative and end-of-life needs, she said she was able to assess whether existing services were having “any impact on them”.

She said: “Support for them needs to come [from] more awareness of their needs, institutionally and systemically, so that our services are responsive to their needs.

“For example, having multicultural bereavement counsellors, or having LGBTQ+ bereavement counsellors, or allowing boating people to have a GP access where they’re docked.”

Ms Vijayshankar explained that there were a variety of reasons that marginalised communities faced inequity in accessing palliative care services.

In summary, she said these communities were “systemically invisible”.

“There’s a reason why they’re called hard to reach communities, because it’s very difficult to make inroads to them”

Rekha Vijayshankar

“The evidence of that is fewer referrals being made for populations that are minoritised and marginalised into palliative care [and] hospice frameworks,” she said.

For minority ethnic communities in particular, Ms Vijayshankar argued that the inequities were underpinned by systemic racism within healthcare systems across the UK.

She said: “[There are] not very high levels of hospice utilisation amongst these populations because, again, there isn’t that referral coming in.

“[There is a] lack of knowledge of service provision [because] no one’s told them what’s available.”

Similarly, Ms Vijayshankar uncovered through her research that many minority ethnic communities had a level of “mistrust” of services due to healthcare’s colonial history.

“They still recall the subpar treatment that their ancestors had gotten as part of the colonial legacy. So there was, therefore, pervasive mistrust of healthcare institutions,” she noted.

Meanwhile, Ms Vijayshankar also described “pervasive” cultural stereotyping that was happening among some health professionals, which had resulted in marginalised communities not receiving equitable palliative and end-of-life care.

“There is not enough understanding of why [patients’] cultural and religious frameworks inform how they think [or] how they make decisions,” she said.

This was particularly prevalent when it came to care planning and decisions about the end of life.

It was Ms Vijayshankar’s own experience of this which influenced her to become a nurse in the first place.

She described how the care given to one of her family members with a complex chronic condition was “culturally stereotypical and inadequate”.

“It left the patient and me as the family caregiver at the time, with two young children both less than four years of age, feeling completely lost,” she said.

After the family member died, Ms Vijayshankar was told by her GP that there were no services to which she could be signposted to support her with her bereavement.

She said she felt “complete loneliness” as a result.

“I felt that… I could either be bitter about it or I could do something constructive with it. So that’s why I went to King’s [College London] and did my nurse training,” she said.

Nurses play a fundamental role in empowering marginalised and minoritised communities to make informed decisions about palliative and end-of-life care.

As such, Ms Vijayshankar argued that greater weight should be placed on this during nurse education.

“We have training in unconscious bias, [but] that in itself is inadequate,” she said.

Instead, she highlighted the need for education on transcultural communication, to empower nurses to approach conversations about terminal illness and the end of life with people from diverse backgrounds in a better way.

Meanwhile, Ms Vijayshankar highlighted reflective practice as an effective tool for how nurses learn from situations with patients and carers.

She added: “When it comes to nurse revalidation, and they ask for a reflective statement, maybe there is something about asking for reflection on how our practice was mindful of differences. That sort of holistic review seems to me to be the answer.”

Conversely, Ms Vijayshankar also argued that some of the answers to improving equity in end-of-life and palliative care “sit in the communities themselves”.

“There’s a lot of research in palliative care provision but it is all really targeted to a White, middle-class population”

Rekha Vijayshankar

She noted that peer-to-peer support through grief could build “self-efficacy”, especially during a time where service provision could be so sparse.

Ms Vijayshankar explained that she was currently looking to embark on a PhD study on this topic.

The fire at Grenfell Tower in 2017 was a clear example of the need for “more community capacity and more community resilience in the face of shortage of service provision”, Ms Vijayshankar said.

At the time, she was working as a health visitor in a 0-19 children’s service in Kensington and Chelsea.

Subsequently, she became responsible for leading the health visitor response in the aftermath of the tragedy, which killed 72 people.

Reflecting on that time, Ms Vijayshankar said “service provision was inadequate” in meeting the needs of the families affected by the fire and, as such, her 10-strong health visiting team turned to alternative methods to try to support people to process their shock and grief.

One woman, who was heavily pregnant, managed to escape the flames but was traumatised in the aftermath. She told Ms Vijayshankar that the incident felt like a “volcano that has erupted”.

“I used the same metaphor back to her,” explained Ms Vijayshankar. “I said to her ‘yes, but when the soil cools it’s very fertile – what do you want to plant?’ And she broke down in tears.”

It was at this point that Ms Vijayshankar honed her passion for poetry and journalling as a tool to process grief.

She explained how she worked with many families affected by Grenfell, as well as hundreds of others thereafter, to confront their emotions through writing.

“Writing offers that non-judgemental hug,” she said. “It’s the embrace of words where you’re not judged and, therefore, it offers that sense of safety.”

Ms Vijayshankar said that she encouraged survivors of Grenfell to think about the strength they had within themselves to enable them to get through each day.

“[I was] supporting them through that by looking to find hope, and by focusing on the strengths that they had and how they could translate that into a new life,” she said.

Looking back at her role at Grenfell, she said that she was “proud” of the response she led after the fire.

“I look back on that time and I think it was a job well done. Because the children all had their one-year checks, and they all passed,” she said.

“When I finally had to step down, I left mums and dads in a place where they were looking to build a future.”