Glasgow Social Sciences Hub

Almost half a century after Lofland wrote these words, many dying people still aren’t able to control their death in the way she foretold – perhaps because they aren’t given a clear prognosis by their doctor, or do not want to “hear” their prognosis when they are.

In Liz’s case, she identified herself explicitly as “terminally ill”, yet said this status was not recognised by many of the people she was in regular contact with – from fellow churchgoers and neighbours in her tower block to housing association officials.

Living on her own and without the understanding of people around her, Liz was reliant on a home care service to support her with washing, dressing and making meals. But the company wanted to arrive at her flat at 8am each morning, and offered her only half an hour of care each day. This was never going to be enough to enable her to die at home – and besides, she often wanted to sleep in after a fitful night disturbed by all the noise both inside and outside her tower block.

The inadequacies in Liz’s care package made her feel disempowered – contradicting one of the key reasons people want to die at home: to retain a feeling of control and autonomy. Without family and friends to help with end-of-life care, the opportunity to die at home is much less likely.

Liz would have benefitted from a dedicated end-of-life advocate, who could have represented her needs to all the bureaucracy she was encountering; someone who could have made her feel less alone, and reassured her as she faced her impending death:

I think I would appreciate someone coming to my home to have an honest conversation with me, because I think I’m in denial. No one has come and said: ‘Have you really thought about this? Where would you like to pass away your last days?’ I don’t know why I’ve never brought this up with the doctor – I don’t have the courage to bring it up.

The modern hospice movement

Fears about the future are a frequent cause of suffering and distress for those nearing death. Similarly, people often feel discomfort when dealing with someone who is terminally ill – Lofland put this down to a widespread lack of familiarity with this new social role.

Fortunately, Liz was connected to a hospice team run by end-of-life charity Marie Curie, and assigned a palliative care social worker who sought to ease her worries about her living situation and the difficulties in her relationships, as well as her physical pain. But this is a rarity: the UK has only a few hundred palliative care social workers to assist the hundreds of thousands of peoplewho die with such care needs each year.

Ultimately, Liz moved into the local Marie Curie hospice, where she was cared for at no cost until her death. However much she had wanted it, dying at home was no longer possible. Her home could be considered “insecure” because it was porous to outside elements – both damp and noise pollution. There was a lack of security caused by having no one living in the house with her and supporting her with her end-of-life care needs. And her body was no longer secure due to the severity of her symptoms.

People like Liz who live alone and in more deprived areas are more likely to spend longer in hospital at the end of their lives, and to die there too. Happily for Liz, the availability of a hospice meant she could avoid this scenario.

 

Barry’s story, from the Dying In The Margins series.

The modern hospice movement stemmed from the European model of care for the “dying poor” in the late 19th and early 20th century. In the UK, these homes cared for people who were too sick for the workhouses. While there was a strong salvationist ethos in these early hospices (and a clear interest in deathbed conversion to Christianity), there was also a philanthropic element whereby care and comfort could be offered to those with nowhere else to go.

This spirit of offering a sanctuary for people whose homes have become unsafe continues in today’s hospice movement, though without the same kind of moralising impetus which dominated the Victorian era. (In comparison, the UK’s care home sector is beset with structural challenges, and its “invisibility” as the poor relation to the NHS means it has lagged behind the hospice sector in terms of specialised care of the dying.)

In the UK, hospices support around 300,000 people annually, with 5% of the 650,000 people who die each year doing so in a hospice. It costs around £1.6 billion each year to run these hospices, paid for by both private and public funds – with less than £0.5 billion coming from the UK government.

Recently, most hospices have moved from in-patient units to a “hospice at home” model – in theory, meaning they can serve more people and enable more home deaths, in line with what people say they want. But they are also facing “the worst funding crisis in two decades”, with one in five hospices cutting their services, according to research by Hospice UK.

The independent governance arrangements of hospices, and their unique position outside state bureaucracy, arguably gives them the power to carve out their own priorities in an increasingly unequal world. A redirection of funding towards those “on the margins” with greatest need might not be popular with the main charitable donors to hospices – but it may equally give hospices a reinvigorated sense of their original philanthropic mission.

While Liz told us she was happy in the hospice and felt safe and comfortable there, she was no longer surrounded by her worldly possessions and had very few visitors. The hospice was a long way from her neighbourhood and her partner, whose only means of visiting her was a long and expensive bus journey.

Nonetheless, unless there is a wholesale pivot towards ensuring adequate and sustainable care packages for people in their homes, the need for in-patient units in hospices in which people like Liz can die safely will continue – and demands greater support.

‘He just wanted to get home to his dog’

Max, like Liz, was clear that he wanted to die at home. The army veteran had experienced much trauma in his life, including periods of homelessness and substance misuse. But unlike Liz, who had no one to provide informal care at home, Max had friends who looked after him on rotation – and his dog, Lily, to keep him company.

Max had difficult symptoms, experienced considerable pain, and could be a challenging person to care for. When we interviewed one of Max’s friends after his death, it became clear just how exhausting caring for him had been. His friends were also living insecurely and struggling with financial hardship – which research shows adds more stress to this already demanding role.

The costs of death may also be felt by these friends and relatives, who often pay for funerals they can barely afford. Sometimes there are debts – on credit cards, with utility companies – that need to be serviced post-death.

According to his friend, Max had undiagnosed post-traumatic stress disorder (PTSD) – something that is known to re-emerge or become exacerbated when someone nears the end of their life. “He would take the dog out to the park at night because he couldn’t sleep,” this friend explained, “and sometimes our relationship could be very volatile.”

When Max’s symptoms became too difficult to manage at home, he was admitted to the local hospice – but he struggled with the change of environment. On one occasion, when asked to hand over cash to be put in the hospice safe, he refused and made a “great escape” (as Max put it) from the hospice. He apparently wanted to “get back home to his dog” and be free of institutional control.

Concerned for Max’s safety, the hospice contacted the police, who deployed search dogs and helicopters in their search for the dying man. This made us wonder if his care had taken sufficient account of past traumas from his time serving in the military or living on the streets. While the search was well-intentioned, there was a danger of treating Max like a criminal and retraumatising him.

In the end, this can be seen as a success story. Once located, the hospice took a different approach with Max, enabling his desire to remain at home for as long as possible – up to only a week before he died.

But it also highlights the financial and health impacts on caregivers, especially those who are struggling to make ends meet. With the predicted increase in people dying at home in coming decades, there will be a parallel increase in the burden of costs placed on family and friends. Such “lay” caregivers often really want to be involved, and empowered to take control of situations. But they require both professional and financial support to do so. 

‘The human factor is gone’

The day Stacey finally got keys to a new ground-floor, two-bed flat, she arrived with her husband Joost – and immediately collapsed. She was blue-lighted to hospital, and from there moved to a hospice she never left. After all those requests for a move out of her cramped Glasgow high-rise, Stacey never even got to spend a night in her new home.

Despite her remarkable ability to self-advocate, the social housing system appeared completely unresponsive to Stacey’s needs and her end-of-life distress – perhaps presuming the hospital and care sectors would take the strain. Afterwards, Joost wrote:

Tragically, as Stacey stepped out of the car, she collapsed in front of her new home. She was the proudest woman in the world, and her dream ended on the doorstep. Her dream, after ten years of battling cancer, was a simple two-room flat – that was all she wanted. This is the UK, one of the richest countries in the world, yet this can happen. Why are terminally ill people not assisted more promptly by housing associations when they need it, to have just a few happy, worry-free final years of life?

Shockingly, within two weeks of his wife’s death, the housing association served Joost an eviction notice from the flat they had fought so hard to move into. The notice arrived three days before his wife’s funeral.

It is not uncommon for relatives to be missed off tenancy agreements when they have moved in to undertake a caring role in the last years or months of someone’s life. When Stacey signed the tenancy agreement, Joost was not listed as a spouse and co-tenant. This human error in the advice given to her while in the hospice meant when she died, he immediately lost his tenancy rights.

When Joost contacted us about the eviction order, we were shocked by this seeming lack of compassion and disregard for Joost’s grief-stricken state. As he later told the BBC: “The human factor is completely gone.”

In response to his request for help, our research team worked with Marie Curie and a local politician to publicise his story. Eventually, the housing association agreed to extend his tenancy on the flat by four months to give him time to grieve and make alternative living arrangements. Months after Joost had vacated the property, we found out that it was still empty.

Marie Curie is now lobbying the Scottish government for tenancy succession rights to be extended for 12 months post-death. Meanwhile, other stories of relatives being evicted and finding themselves homeless soon after a close bereavement have also highlighted this “hidden” housing issue.

For people who are grieving, life is not “business as usual”. Just as people’s distress at the end-of-life can be worsened by financial insecurity and vulnerable circumstances, so people’s grief can become more complicated and prolonged through bureaucratic callousness.

How easy is it to die at home?

In future, many countries will have no choice but to shift much further from institutional dying, which has become the norm over the last century, to dying at home, because of the increasing number of old people and the resulting pressure on hospitals. Conveniently for policymakers, most of us want to die at home, surrounded by the people we know and love in a place that brings comfort in this final, frightening stage of life.

But how easy will it be to die at home? According to our research, not easy at all – because how and where we die is an increasingly unequal issue for many societies.

How we die often involves many intermediaries other than healthcare professionals – including employers, social security officials, housing officials and social care providers. And people struggling to make ends meet are likely to come into contact with more intermediaries and state agencies at the end of their life than those who are more affluent.

While many people have more protracted “dying time” than they did even a decade ago, this does not necessarily confer more meaningful time alive. Stacey, for example, had struggled to come to terms with her terminal prognosis, was only 37 when she died, and had lived with cancer for 10 years. How was she to know when to draw a line under her chemotherapy treatments, and when the balance had tipped from extending her life to merely extending her suffering?

Having this “goals of care” discussion – as popularised by US physician Atul Gawande in his 2014 book Being Mortal – is a key focus of palliative and end-of-life care. However, it is dependent upon first being able to have an open conversation about the patient’s prognosis, and how long they have left.

This is much more difficult in cases of multi-morbidity, which are on the rise in medically advanced countries such as the UK. In particular, people living in more deprived areas are more likely to die with multiple chronic conditions, while people with lower wealth also face more hospital admissions – in part because they simply have worse health.

Donna was 56 when she participated in our Dying in the Margins study. She was living with multiple chronic illnesses including chronic obstructive pulmonary disease (COPD), osteoarthritis and liver cirrhosis. Most recently, she had been diagnosed with liver cancer. All these conditions combined meant she was nearing the end of her life.

Yet despite all her medical appointments and hospital stays, and all of the specialists she had encountered over the years, she had never once had a goals of care conversation, or a discussion about what she could expect as she neared the end of her life.

However, Donna was supported by a community link worker, a non-clinical practitioner responsible for helping with non-medical needs and linking her up with services. In a sense, this was the person providing her palliative care – by initiating goals of care conversations and introducing a more holistic approach to Donna’s care and wellbeing.

She had had a difficult life, experiencing financial insecurity, the premature death of her son, and unexpected caring responsibilities for her grandchildren. Through all of these, her link worker offered the continuity of care which was otherwise lacking.

Without this single point of contact looking at the overall picture or seeing a person’s life “in the round”, there are likely to be lost opportunities to initiate a palliative approach to care – as Donna herself highlighted to us:

I was thinking the other day, maybe if they actually sat down and told me about my liver and then my pancreas and all that … They’ve not really explained how my illness will go on, if you know what I mean? I would like somebody to sit down. Just sit down and … I definitely want to know.

A new approach to dying

Dying is a social justice issue. Addressing people’s housing situations, enhancing their social security entitlements, adapting care to take account of trauma experienced during their lives – all are palliative care interventions, whether delivered by healthcare professionals or not.

Understanding this broader context is often referred to as a “new public health approach to dying” – one which involves whole communities.

Our research suggests the way we treat people who are dying needs to change. If we want to keep people out of hospital – and demographic and epidemiological trends suggest we must – then we need to rapidly and drastically improve the home support offered to people in the final stages of life. This support should not only be afforded to those who possess the most social and economic capital.

During the COVID pandemic, the Institute for Public Policy Research (IPPR) warned that, without action, end-of-life care in the UK faced an “eternal 2020” – in other words, the pressures felt in the health service during the pandemic could become the new normal. The IPPR report recommended hiring 2,700 end-of-life care advocates across the UK.

The experiences and insights of those we have interviewed – many of whom are no longer alive – show us that much end-of-life suffering could be reduced, or even avoided altogether, with more tailored support and recognition for those experiencing financial hardship and material deprivation.

The ability of people in our study to self-advocate until very close to their death was remarkable. We hope their legacy can be a more compassionate and responsive system for others who are running out of time.