By Alison Ramsey
IAHPC Newsletter Editor
Widespread suffering endured by thousands of people dying of COVID-19 in the United Kingdom finally motivated the government to pass a law that requires clinical specialist palliative care throughout England.
“Palliative care was shown to support other health care professionals working on the front lines,” says Baroness Ilora Finlay of Llandaff, who was instrumental in enacting universal palliative care in Wales and lobbied hard for the UK law. “Providing advice, having difficult phone conversations, handling the dilemma of assessing when someone requires ventilation: many clinicians were not used to dealing with that.”
Hospices in the UK are reliant on donations and money raised through their charity shops. When the pandemic gutted funding, the government stepped in to keep services afloat. “It demonstrated how unstable even the best services in wealthy areas were,” said Baroness Finlay, herself an independent Member of Parliament’s House of Lords. “You would never say that we should have a fundraising event for a woman in obstructed labour to get a Caesarian section, so why do we have to have one for the care of someone who is terminally ill?”
As of the writing of this story, the UK amendment to “ensure that palliative care, including specialist services, are core services available equitably across all sectors,” looks secure, but the bill was awaiting its final step: Royal Assent.
The success of the amendment was predicated on government support, something that was lacking the four times that Baroness Finlay tabled similar legislation. Today, 21 years after first championing the cause, she is poised to help enact the new law, leading by example.
Baroness Finlay, a physician and professor, set up a diploma in palliative care in 1989 at Cardiff University in Wales. She urged Wales to offer palliative care to all and, in 2008, it became policy. She steered the country’s transition and believes that the funding formula used there can work equally well throughout the UK.
Given that palliative care transformation throughout Wales was achieved on just £2 per person (about $2.50 US), “it’s not about money: it’s about a whole change in culture,” says Baroness Finlay.
For example, flexible working patterns allowed seven-day services with active intervention avoiding crises building up on weekends. Staff were given flexibility—time off as needed for family crises during the week—but overnight shifts of specialist nurses were not financially viable. Instead, a 24/7 consultant helpline offered after-hours advice and support to health care professionals.
When one nurse balked at working weekends, Baroness Finlay implored her to try it just once. “After one shift, she told me, ‘I never realized how many clinical problems happen over the weekend. One complex case took the whole of Saturday, and the patient died peacefully on Sunday. If I hadn’t been on call, it would have been the most horrendous situation.’ As the most senior nurse that weekend, she admitted that she quite enjoyed the added responsibility.”
When the core clinical element of palliative care is government-funded, charity fundraising can and will pay for many important additional aspects, she notes, such as additional nursing, plus social work, physiotherapy, occupational therapy, and chaplaincy services.
Palliative care has a scientific evidence base that did not exist 50 years ago.
“Back then, smelly, fungating wounds were common: now we know what to do,” says Baroness Finlay. “We understand now how to administer opioids better. We understand the psychology of grief, and have better evidence on how to speak to children of dying parents so they are less damaged than when they were kept in the dark.
“The evidence is there: if palliative care is available early, you can avoid problems escalating, avoid unnecessary admissions and get patients home more quickly, so it’s cost-effective. And you can look after people well. It’s very, very rewarding if someone is distressed and you can sort out their distress quickly.”
The high numbers of COVID-19 deaths made the public and legislators acutely aware of the need to manage dying well, a message Baroness Finlay has been promoting for years in Parliament. She says that change would not have been possible without charities’ support in campaigning, led by Marie Curie, working with Hospice UK, Together for Short Lives, Sue Ryder, and the Alzheimer Society.