Today, Tuesday 27th September 2022, we are releasing the first 3 digital stories from our research project about barriers to, and experiences of, home dying when experiencing financial insecurity and hardship.
Digital stories are 2-3 minute films combining photos, music and voiceover, within a narrative structure. This is a participatory visual method, adapted for use during the pandemic, and all 3 stories are all told by bereaved relatives, in their own words.
Our aim is that these digital stories will be used in education and training contexts, and for advocacy purposes. Each story comes with an accompanying ‘toolkit’ with a set of questions useful for structuring a learning session.
We are also still actively recruiting until the end of 2022. If you have a story to tell about a loved one who experienced financial hardship at the end of their life, or financial barriers to dying at home, and you would like to make a digital story with the support of the research team, then please get in touch:
Dr Sam Quinn on: 077730099548 or Sam.Quinn@Glasgow.ac.uk
As Told by his brother, John Thompson
In this digital story, John Thompson describes the difficulties his brother, Steven, experienced trying to the access the disability benefits he was entitled to at the end of his life.
“It is my firm belief that the benefits system hastened the death of my brother, Steven Thompson.
Steven had a slow growing cancer which he fought for a number of years. He lost his zero hour job mainly due to attending a number of medical appointments which meant he was not available for work at short notice. Because he was on a zero hours contract, he had no working rights such as time off for medical appointments.
He was advised by The Citizens Advice Bureau to apply for Personal Independence Payment (PIP), a state benefit for people living with a disability. He was initially turned down, and again refused on appeal. With the help of a local advisory service he eventually won an award at a legal tribunal.
Two years later, the PIP award was stopped and he had to apply again. He was again refused. He did not have the mental or physical strength to mount an appeal.
At this point he gave up fighting and died six weeks later.
My question is: How can someone with a slow growing cancer be eligible for PIP at one point and yet two years later be refused?
The Department for Work and Pensions (DWP) would have received a report from the GP stating that the cancer was not any better and the award should have been made automatically.
Steven’s final journey was to the hospital for a routine check-up. The hospital was 12 miles away; a 30 minute car journey. However, neither Steven nor any family member drove a car, so the journey had to be made via public transport; a 90 minute journey ending with a ‘6 minute’ walk to the hospital. This walk took 20 minutes due to the severity of Steven’s illness. He never made the return journey.
Perhaps if Steven had had some extra financial support via PIP he might have taken a taxi to the hospital.
I made a complaint to the DWP but was assured that from their point of view all the boxes were ticked and the computer said ‘no’. This may be true, but if so then the system is not only wrong it is cruelly wrong. People’s hopes are destroyed when they are at their lowest point.
It is my aspiration that the system is fine-tuned so that no one finds their hopes destroyed as Steven did. This is why I am sharing his story.”
Please download the accompanying toolkit here.
As told by her daughter, Nicola Liddell
In this digital story, Nicola Liddell describes her efforts to try to help her mum, Linda, die at home and the extensive financial and environmental barriers she encountered.
“When my mum initially went to see the GP in 2019, she was told her pain was pulled muscles and was given painkillers. But she actually had stage three breast cancer and developed large lumps under both of her arms. When she was finally correctly diagnosed, she was too ill for chemo and radiotherapy. Two of the discs in her spine had been eaten away by cancer.
Nevertheless, the physio team would visit her in the hospital to try and encourage her to walk up two flights of stairs with her walking stick so that she could be discharged home. She needed to be able to walk up a flight of stairs to get to her flat on the fourteenth floor because the lift only went up to the thirteenth. This gave us the false hope that she might be able to return home, where she wanted to be.
My mum’s experience in the hospital was poor. She was hoisted out of bed, crying in agony because of the pain in her back. She had to use the commode on a mixed ward of six people. This was not dignified. In another incident my mum fell out of bed while trying to get to the toilet and hit her head – she was unable to reach the buzzer to call a nurse for help.
As time passed my mum became frailer. She was put in the day room so they could clean the ward. A healthcare assistant was trying to get her out of her seat to take her back and my mum repeatedly asked them to wait so she could slowly get herself up. Trying to help, the healthcare assistant lifted underneath her arms, and her collarbone broke. This was upsetting for us … it felt like she wasn’t being listened to.
A social worker came every day to organise my mum’s discharge. However, because of the strong pain medication she was on, my mum was confused about what had been organised for her. The social work team tried to discharge her to sheltered housing accommodation on the opposite side of the city with no additional support and no in-house care. My uncle and I had to insist that the social worker wait until my mum had accompanying adults before they discussed her discharge.
We never once got to speak with my Mums consultant directly, I didn’t get a reply to any of my pleas for information. Once we were told she was terminal and she had around 3 weeks to live I was adamant she would not die in a mixed ward. I called the hospice every day for eight days until they had a space to take my Mum. After trying to get her to be transferred and repeatedly being told there was none available, I drove her there myself.
In the end, it felt like there was never a concrete care plan shared with us for how she was going to get back home. She wanted to be at home at the end of her life. Although she passed away five and a half weeks after first going into hospital, every single day was challenging. This was precious time I wanted to spend with mum. I didn’t want to be chasing doctors and nurses. Although we were relieved when she finally got a room at the local hospice, it felt as if all the way through, we were never offered any choice or given clear communication on what was happening.
I felt so guilty that after everything my mum had done for me I couldn’t have her die at home. The home she had lived in for 30 years, her little safe haven. I need to live with that, that I let her down. I shared my mum’s story so other people can avoid a similar experience.”
Please download the accompanying toolkit here.
As told by his wife, Jo Armstrong
In this digital story, Jo Armstrong describes the difficulties she experienced trying to secure public funding for a care package which would enable her husband, Barry, to die at home. Barry’s story provides insight into the types of knowledge and resources which can be required to enable a loved one to die at home.
“My husband, Barry, died in November 2020, three and a half months after receiving an initial inadequate care package and only six weeks after receiving the right care package. Assessing his needs properly, listening to our needs as a family and acting on them would have produced a different outcome. We would have had the care we needed when we needed it. Then we could have used our energy on spending time with him. I will not get that time back. This has to change. I have worked with the End of Life Studies Group at the University of Glasgow to create a 3 minute digital story in order to raise awareness.
“I don’t want to know my prognosis, I just want to know what will be done about it.”
With those words my husband and I entered the consultation room, take away coffee in hand with a hastily packed pen and paper to make notes with.
We left reeling; an incurable brain tumour, proposed high risk surgery, radiotherapy, chemotherapy, all essentially palliative – prolonging time alive but no curative options on the table.
In that hour our sense of selves, family and future fissured. We had always seen our future selves going to work abroad again, leaving the UK for another adventure of cross-cultural living and working, just as soon as our boys finished school. Now we had to navigate how to tell them the terrible news, how to live when time frames become sharpened, unpredictable.
I had access to median survival times, Barry wisely chose not to know these. We chose to return to work. Barry had worked hard to develop a career in humanitarian aid and we drew on the Trades Union Congress’ Dying to Work campaign to ask his employer to support his return. Working was important in its occupation, it provided meaning and an income.
Each month brought deterioration, ineffective treatments, first, second and third line until the lines ran out. We were in Covid-19 times; the first lockdown. An oncologist explained by telephone rather than in person that deteriorating scans meant no more treatment options. We were cut loose into the unchartered waters of decline. The unknown and unknowable face of dying.
We had a supportive palliative care doctor and district nursing team. We chose to travel to see family during lockdown in Ireland. Through my work and our friends, we created a lending library of kit so we could live as fully as possible. Mobility scooters were borrowed, these were exchanged for wheelchairs, for temporary ramps, for supportive backrests. Our local community therapy team set up grab rails, a hospital bed and a hoist.
Barry had always taken our boys on a Dad’s camping trip each year, so when the first lockdown eased we went. Supported by two other dads, their sons and a lot of equipment we managed a short trip, to sit round a camp fire, get to the sea and watch the boys play in a river and at a skatepark.
As Barry’s physical fragility progressed, I needed help. Our neighbours pitched in, sharing their swimming pool when our local day hospice felt that bathing Barry was too difficult, sitting up with Barry over night to enable me to sleep. I had to stop work and instead I worked to navigate the opaque process of securing Barry’s care.
We were offered daily care call visits that failed to time their arrival to Barry’s needs. To die at home when physically dependent takes a team around the dying person. They need to be supported through the long nights of darkness and distress, they need to be helped with all tasks; feeding, washing, dressing, accessing the garden. They need the opportunity to talk about dying, what they want and do not want, their funeral wishes, to weep and for their loved ones to walk this road with them, rather than sink under the unrelenting burden of shifting symptom management and the gruelling nature of 24-hour care.
Barry could not sleep due to his high steroid dosage. I needed a live-in carer and night carers so I could care for Barry, leave the house for the school run, host the continual flow of friends and family, and support our children. We did not want to be in a hospice, a 40-minute journey away with Covid-19 visiting restrictions, cumbersome personal protective equipment, and the chance that Barry would be alone through the night.
I am sad to write that this was a battle – of arguments, of care package reviews, of a failure to assess, of delays. Substantive stress on an already stressful situation.
Barry died at home in November 2020, his family beside him, he was 47 years old. His sons were 11 and 13.”
Please download the accompanying toolkit here.
We are still recruiting participants who have a story to tell about financial hardship at end of life or financial barriers to dying at home. Recruitment will remain open until the end of 2022. If you have been bereaved in the last 2 years and if you are willing to share your experiences in the form of a digital story, then please get in touch with the research team.
Dr Sam Quinn – 07773099548; Sam.Quinn@Glasgow.ac.uk