If given the option, most of us would choose to die in a tranquil, pain-free environment surrounded by our loved ones.
And since 80% of us will pass away owing to chronic illness (rather than sudden death or accidents), the majority of us will rely on modern medicine — particularly palliative care — to cross the finish line of our lives in relative comfort.
Few people realize, however, that palliative care is much more than administering powerful painkillers intravenously to alleviate suffering in the final days or hours.
According to the NHS, it is a useful, life-enhancing treatment that should be made available as soon as a patient receives a terminal diagnosis (even though it may not kill them for many years) – not just in the latter phases of life.
But is this being carried out? Worrisomely, the evidence suggests that thousands of people in the United Kingdom who require palliative care do not receive it at all, let alone at the earliest feasible time when it is most beneficial.
According to Baroness Ilora Finlay, a professor of palliative medicine at the Cardiff University School of Medicine, approximately 109,000 individuals per year do not receive palliative care due to inadequate provision.
This is even though multiple studies have demonstrated that initiating palliative care as soon as possible following a terminal diagnosis not only prevents many patients from sinking into excessive melancholy and despair but even helps some patients live longer than predicted.
Good palliative care should encompass offering emotional and psychological support, helping patients prepare for the future, combating loneliness, and assisting fearful individuals to make the most of their remaining time, as opposed to only relieving excruciating pain.
The number of people in the United Kingdom who potentially benefit from palliative care is expected to increase by up to 42 percent over the next two decades, as the population ages and better therapies extend the lives of those with catastrophic illnesses.
Yet, the World Health Organization reported in 2014 that patients were missing out on early palliative treatment because neither health professionals nor the general population was aware of its benefits.
Scott Murray, emeritus professor of primary palliative care at Edinburgh University, explains, “Good palliative care can lengthen someone’s life because if they are enjoying life, they may live longer.”
The average duration of survival following a terminal diagnosis is three years. In countries with high incomes, such as the United Kingdom, up to 80% of patients who pass away may have benefited from palliative care far earlier in their illness.
This is a squandered chance to improve patient care, family support, and health services.
Palliative care has been a component of medical practice informally since the late 1800s when it was referred to as aiding a “peaceful dying.” But it wasn’t until 1987 that it was acknowledged as a distinct medical specialty in the United Kingdom.
The term encompasses everything from pain relief and symptom management to addressing social isolation caused by the diagnosis, involving the patient’s friends and family in their care, addressing what happens when the patient dies and focusing on getting the patient well enough to enjoy the remainder of their lives, rather than simply counting the days.
Liz Todd, 63, who was diagnosed with terminal lung cancer last year, reports that her palliative care team has assisted her in achieving this goal.
Liz, a divorced mother’s aide from Stirling in central Scotland with one kid, was diagnosed with ‘excruciating’ lung pain and has received immunotherapy, which it is hoped would give her an additional 18 months of life.
Instead of fretting about how much time she has left, the palliative care team at her local hospice has helped her “tear down everything about my condition so that I viewed it differently.”
She continues, “Talking to them makes me feel lighter.” They do not usually emphasize the illness aspect. It is about living a decent life for as long as possible.
When I was ill, my daughter wanted to fly me everywhere, but I just want to appreciate the ordinary. In 2015, the Parliamentary Health Service Ombudsman, an independent body that investigates complaints against the NHS, published Dying Without Dignity, a damning indictment of the state of palliative care services that detailed the experiences of 12 patients who did not receive proper care during the final stages of their illnesses.
One guy, a 29-year-old cancer patient, was kept in excruciating pain for more than 11 hours because medical workers failed to provide him with enough pain treatment.
A 56-year-old woman’s family watched in agony as she endured agonizing pain because a palliative care team was not available outside of business hours to deliver the appropriate medications.
The report concluded, “We saw heartbreaking examples in which people’s suffering could have been prevented or alleviated with the proper care and treatment as they neared the end of their lives.”
The pain this causes them and their loved ones are incomprehensible.
The investigation found deficiencies that resulted in few dying individuals receiving the necessary palliative treatment. Poor symptom control, poor communication between doctors and families, and ‘inadequate’ out-of-hours services prevented sick patients from receiving sufficient pain relief.
Recent research reveals that little has changed since then.
Marie Curie, a charity for patients with terminal illnesses, has determined that the average cost of palliative care for adults over 65 in 2021 was only £19 per person.
Care for the terminally sick and dying remains a low priority for many of England’s new integrated care bodies, a network of 42 organizations that took over overseeing local NHS services from clinical commissioning groups in July.
Only six of the 23 boards that have published a strategy for strengthening local health services have made palliative and end-of-life care a priority, according to the study.
Professor Finlay told Good Health: ‘The chairman of one board despaired at his inability to convince people of the need for palliative care.
People who may have benefited from palliative care and had a high quality of life are tragically suffering from uncomfortable symptoms and worries that have never been addressed. The NHS promised to support individuals from birth to death, and it should now fulfill that commitment.
Professor Finlay, who is also a member of the House of Lords, helped pass a vital amendment to the Health and Care Act 2022 on end-of-life care earlier this year.
The amendment makes it a legal requirement for the National Health Service to provide palliative care services to terminally ill patients as soon as possible.
The Care Quality Commission, the organization responsible for enforcing standards in hospitals and nursing homes, could identify noncompliance through inspections.
Good end-of-life care differs from patient to patient, depending on their needs.
Professor Murray continues, “I collaborated with a single patient to develop the palliative care plan he desired.” Before that year, he had been admitted to the hospital eleven times (due to complications arising from his diagnosis).
In the year after the plan was implemented, he was not admitted at all. He desired to stay at home and take the chance of dying.
Studies indicate that frequent emergency hospitalizations, which can be traumatic for terminally ill patients who wish to spend as much time as possible with their loved ones, can be avoided if palliative care is in place.
In lung cancer, for instance, research, such as a 2010 study published in the New England Journal of Medicine, demonstrates that intervening sooner rather than later improves mood and quality of life and, most importantly, reduces the amount of extremely aggressive treatment patients receive when they are already extremely fragile.
Professor Murray explains, “Measures include spotting indicators of deterioration (due to more frequent interaction between patient and palliative care team) and assisting with symptom control.”
This eliminates emergency hospital stays and avoids treatment that, in the end, is worse than useless and can overwhelm the patient with negative effects. Many of these patients die within a few weeks of receiving chemotherapy, for instance.’
According to a study from the University of Alabama, it’s not only patients who get the benefits.
The findings, which were presented for the first time at a U.S. cancer conference in 2014, revealed that terminally ill cancer patients’ loved ones suffer less depression and stress after the patient’s death if they have access to palliative care and bereavement counseling well before the patient dies.
In the United Kingdom, hospices shoulder the majority of the responsibility for end-of-life care, assisting more than 200,000 patients annually through their final days.
Additionally, they offer grief counseling to around 40,000 bereaved friends and family members. This costs approximately £600 million per year, however, the majority of hospices receive less than a third of their income from the central government, with the rest coming from donations and fundraising.
During the epidemic, this almost ceased, depriving many independent hospices of the funds necessary to continue funding services. Sue Ryder, one of the largest providers of palliative care in the United Kingdom, has repeatedly warned that the system will collapse in the future if ministers do not commit to providing at least 70 percent of the annual funding required.
Strathcarron Hospice in Stirlingshire, a renowned provider, estimates that its operating expenses will exceed £9 million this year, while its income will be £8.6 million.
Their revenue is derived from bequests, contributions, charity shops, and other fundraising activities.
The hospice has lately implemented modifications to make its services more accessible to those in dire need.
Those in its catchment area of 400,000 no longer require a GP or consultant recommendation to refer themselves or a loved one for assessment; they may simply pick up the phone.
Early palliative care is about achieving the highest quality of life, according to the head of nursing at Strathcarron Hospice, Marjory Mackay. They don’t have time to consider the impact on your life, future, and family.
In addition, she states, “If people are lonely and isolated, they will die earlier and in poorer health.” People often shun folks who are gravely ill because they are at a loss for words.
Iain Milne, a 63-year-old former mechanical engineer, found this 20 years ago after being diagnosed with primary progressive multiple sclerosis, which causes progressive impairment.
Iain, who resides in Cumbernauld, Lanarkshire, explains, “Many of my friends did not know what to say, so they withdrew, and I fell into a deep melancholy.”
Since the beginning, he has relied largely on the knowledge of the Strathcarron employees.
He recalls, “The hospice prescribed me intravenous ketamine (a potent analgesic) every eight weeks for excruciating leg pains.”
The hospice also suggested he engage in arts and crafts to divert his attention.
My illness has worsened over the past year, but the hospice is in constant communication with me and has requested me to speak with new patients to help them accept their diagnosis. This has been quite therapeutic for me.
Professor Murray thinks that it is more vital than ever that palliative care receive the necessary resources.
‘It is essential that health care workers provide palliative care frequently, rather than as an add-on,’ he says.
Without it, millions of terminally ill patients will face needless misery.
