Many people are not given the right care at the end of their lives
The pandemic revealed shortfalls in palliative care provision, writes Ilora Finlay | Alamy
Reform is needed if we’re to remove costly administrative hurdles and provide the palliative support that patients and their families so desperately need
During the pandemic, palliative care has come of age, putting patients foremost as they face the knife-edge of uncertainty between survival and death.
During 2020, the demand for palliative care reached levels previously forecast for 2040. Rapidly, palliative care became an integrated core service across many hospitals, with outreach into care homes and the community.
As deaths rose, palliative care professionals rapidly upskilled others in care of the dying, particularly in handling difficult conversations, and talking openly and sensitively about death with patients and families. Often, they are involved in staff support at every level.
Amid all the black clouds of the pandemic, a few silver linings must guide our future care provision. Silos and bureaucracy have diminished as staff work across disciplines and specialties, seeking advice and recognising their own support needs. And despite the barriers of masks and PPE, people communicate more carefully and sensitively, showing compassion with their eyes and tone of voice to patients and relatives alike. But these staff are emotionally and intellectually exhausted.
The chasm between hospital bed shortages and care home provision was laid bare as the truth finally dawned – care sector staff are skilled and undervalued.
For years in Parliament, we’ve debated ways to reform social care. The recent Lords debate on the Economic Affairs Committee report, led by Lord Forsyth of Drumlean, signalled overwhelming backing for urgent change.
Most seriously ill people want to remain at home as long as possible, reliant on social care support to remain independent and living well. Social care can provide continuity, spotting subtle early warnings of developing health problems.
Social care and healthcare must become integrated and aligned
Social care and healthcare must become integrated and aligned, with staff rotating between the sectors to gain experience, with shared educational and training opportunities.
Care home staff deserve appropriate pay, conditions and above all the respect that registration would afford them. Valued staff can deliver better care. Currently some staff, desperate to earn enough to live, are forced to take on multiple shifts, which runs counter to good practice.
As well as staffing reform, infrastructure and IT frameworks reform is essential: why not let patients have their own notes, including test results? Why repeat assessment after assessment as people move from one sector to another?
Care homes need indemnity to allow them to take patients from hospital based on need. They need simplified processes around funding, direct access to NHS bulk purchases and NHS alerts, and they need to be involved in service planning for the population they serve. It has all been said before!
Community domiciliary care and hospice care must be factored into this, with bureaucracy-light rapid access to transfer as needed. The fundamental attitude must become one of doing everything possible with the resources available, empowering patients to say what they need and removing costly administrative hurdles that ration and restrict.
Care pathways look good on paper for single issue pathologies, but they must be flexible enough to meet the needs of those with multiple comorbidities.
But what about those nearing the end of life? The pandemic revealed shortfalls in palliative care provision and hospices’ vulnerability to funding – they too need security. Dying is not the sole province of the elderly; last year in England and Wales 130,485 deaths were registered for people aged 69 or under, of whom more than two-thirds were of working age, many leaving children orphaned.
Provision must align to need. Much health and social care still operates for only a quarter of the week – 9am to 5pm, Monday to Friday – yet crises often arise at night. Universal 24/7 specialist palliative care support to other teams is essential.
There is powerful evidence that early palliative care drives better quality of life, giving people more control over their care and empowering them to live well, and supporting families too.
Covid has shown that when the crunch comes, people want to live. And when all sectors work together, compassionate care of the dying shines through – that added momentum must not be lost.
Lady Finlay of Llandaff is a Crossbench peer and consultant physician in palliative medicine