Terminal cancer patients are dying in cold homes due to energy costs, stark new research reveals

Irish Cancer Society calls on Government for financial action

8 December 2023: New research, funded by the Irish Cancer Society, reveals stark levels of energy hardship experienced by cancer patients receiving palliative care at home.

Of the nurses surveyed, one in 3 nurses providing end of life care in homes across the country say they have experienced patients’ homes without any heating. 

Meanwhile, 3 in 5 nurses reported households had difficulty paying bills like mortgage, rent and utilities.

And 2 in 3 nurses reported that their patients struggle to afford home heating while almost half (46%) reported that there was no central heating systems in the homes they are working in.

The research was carried out by a team led by Dr. Suzanne Denieffe of South East Technological University (SETU).

Further, hugely concerning findings also reveal that nurses reported observing damp (64%), mould (50%) and condensation (70%) in the homes where they are delivering vital palliative care. Nurses report that these conditions can have a physical and mental impact. 

Responding today to the stark findings, Averil Power, CEO of the Irish Cancer Society, said: “To think of anyone in their final days not having adequate heat is absolutely heartbreaking. The very least we should be able to provide to someone with a terminal illness like cancer, is comfort. This research shows these patients, and their families are suffering needlessly at an already highly stressful and emotional time. Imagine at the end of life you are wrapped up in blankets with a hot water bottle because you don’t have household heating? Imagine the distress you would feel as the loved one of a terminally ill person when you struggle to pay the heating bill? Unfortunately, this is the reality for some. It is appalling to see the level of energy hardship being experienced by these patients, to see them struggling to heat their homes and pay their bills.”

She continued: “At the Irish Cancer Society, we have long campaigned and called for targeted financial supports from Government to help those who have received a cancer diagnosis deal with the cost of cancer. The experiences of patients reflected in this research underlines why Government needs to better financially support all people diagnosed with cancer, including palliative care patients. Specifically, we are calling for patients to be automatically entitled to the Household Benefits Package, the Fuel Allowance Payment, and the Additional Needs Payment. Each year, more than 9,000 people die from cancer in Ireland. All anybody wants is for their loved one to be comfortable and to live well at the end of life. The end result of ignoring these calls is cancer patients dying in cold homes.”

Dr. Suzanne Denieffe, Research Lead and Head of the School of Humanities at South East Technological University (SETU), said: “People deserve a good quality of life as they are dying. Through this research, home care palliative care nurses reported to us ongoing energy hardship and financial difficulties faced by patients in their home. Our research sheds light on the hidden costs of cancer often experienced in the privacy of a person’s home. Now, we must bring this conversation into the public domain to highlight the needs of people living with a life-limiting cancer. We know that people need support, and we have brought together the evidence base and recommendations for Government to take action.”  

In light of these stark findings, the Irish Cancer Society is today reiterating its calls, which have been made to successive Governments in pre-budget submissions, to introduce the following:

• Expand the Household Benefits Package to include those with a cancer diagnosis.
• Automatically extend eligibility to the Fuel Allowance payment to people diagnosed with cancer immediately and ensure access to the full 2023/24 entitlement.
• Extend the Additional Needs Payment to people with a cancer diagnosis to alleviate some of the financial burden. The burdensome application procedure with a means test should be waived for this group and a cancer diagnosis should be the only qualifying criterion for accessing the payment for a cancer patient or their carer.

Anna Drynan Gale, Night Nursing Team Lead at the Irish Cancer Society said: “The Irish Cancer Society Night Nursing Service supports patient choice to die in their own homes and is a vital service to patients and their families. In my Night Nursing role, I have attended many homes over the years and have experienced first-hand that energy hardship can be a real challenge, regardless of their Eircode.” 

She continued: “I have attended to patients in homes where the internal temperature has been dictated to by financial concern rather than choice, evidence of condensation, mould and damp were apparent, contributing to respiratory problems and adversely affecting a patient’s immune system; specifically in immune-compromised patients following chemotherapy. Notwithstanding the detrimental impact that coldness and damp play on a patient’s physical and mental wellbeing. All palliative care patients need and deserve targeted support with energy costs as well as access to a range of non-means-tested entitlements, which the Irish Cancer Society has repeatedly called for." 

Background:

The Irish Cancer Society’s Real Cost of Cancer work shows that many households lose on average €1,500 in income per month following a cancer diagnosis. At the same time, people face additional expenses, including for medication, personal care items and utilities bills (for electricity and heating). 

In 2022, 3 in 4 people affected by cancer planned to reduce their spending on home heating, rising to 4 in 5 people amongst unemployed/retired people and people who lived in a rural area. During treatment, 2 in 5 people affected by cancer reported additional electricity bills and heating expenses.

Energy hardship occurs when households cannot afford energy use or access energy services. A Marie Curie UK report highlighted that energy usage (and therefore costs) increase in households where a person is at the end-of-life. The reasons are varied: many people at the end of life can experience the cold more, clothes/bedding must be washed more often, and some rely on electronic medical devices. Energy hardship has real consequences. Living in a cold home adversely impacts a person’s physical health and mental wellbeing. 

To learn more about the Irish context, the Irish Cancer Society funded Dr Suzanne Denieffe (South East Technological University) and her team to examine energy hardship for people with a life limiting cancer diagnosis, receiving palliative care at home. The research explores the views of home care nurses, family carers, patients, and energy providers and regulators. This brief relies on the responses of 61 home palliative care nurses who completed an online survey, sharing their experiences of visiting patients in their home. Home palliative care nurses working across 26 counties participated in the survey. Results from energy providers and patients/carers will be released in early 2024.

Resources:

Preliminary research findings based upon the responses of home palliative care nurses can be found here Cancer.ie/EnergyHardship 

The Irish Cancer Society’s ‘Real Cost of Cancer’ report from 2022 can be found here