Barriers to a Good Death at Home Identified in New Report

Today, we are releasing the Dying Well at Home Report. This report examines the experience of dying at home in Ireland and shows that there are barriers and many challenges to experiencing a good death. (Read the report.)

While it was noted that many people do die well at home, the report notes that systemic gaps in the provision of end-of-life care in Ireland can lead to consistent barriers and difficulties for both the individual and those who care for them at home and also for the professionals providing care.

Statistics show that between 30,000 and 35,000 people die in Ireland each year. Previous research has shown that 74% of people in Ireland would want to die in their home. However, only 23% of individuals in Ireland have home deaths.

Barriers to a good death include:

1. Insufficient support for families and carers
2. Inadequate access to care
3. Poor coordination of care
4. Insufficient resources to provide care
5. Unsuitable standard of care for individuals or communities; and lack of other social supports.

These issues were further exacerbated in communities that already experience inequitable access to healthcare in Ireland, highlighting the lack of suitability of current services.

Paula O’Reilly, CEO of Irish Hospice Foundation said:

While it is not possible for everyone to die at home, Irish Hospice Foundation believes that more can be done to enable greater choice about where people are cared for as death approaches, to allow them to receive the highest quality of care and indicate their preference to die at home if medically and practically possible. This report identifies the gaps in services that need to be filled if everyone in Ireland is to have the opportunity to be supported to die in the right place, at the right time with the right care.

The report compiles qualitative research conducted between November 2021 and 2022 and details the enablers and barriers faced by people in Ireland that impact whether or not they have a good death. A good death was described by participants as comfortable, calm and free from pain and suffering. A good death honoured the end-of-life wishes of the patient, allowing them to die with dignity in the place of their choosing, with those they wanted present. A good death in the home was also one where families and carers were empowered to provide suitable care to patients; where medical professionals could support informal care; and where the medical and social needs of the patient were met promptly and responsively.

In order to address the gaps in end-of-life care, the report includes the following recommendations and next steps for IHF:

1. To scope and develop an Information and Support Line. 
2. Create an easily accessible map with information resources and current services for supporting end-of-life care.
3. Support and scope further research to identify the barriers and inform the development of resources and co-ordination required to better support dying well at home.
4. Conduct a review of existing resources and training with a view to making these accessible to the community.
5. Identify best-practice community-based end-of-life models of care, which are socially and culturally appropriate to address the specific barriers to care faced by underserved groups to support dying well within their communities.
6. Strengthen our advocacy for primary palliative care supports that help people remain in their community and die at home if this is their wish and is possible.

Participants also highlighted the fundamental need for a strong health system in order to provide end-of-life care at home, including sufficiently resourced services and adequate staffing. They also shared opportunities for greater holistic care through integration of health, social and community services.

The report also found that Covid-19 reduced access and quality to care, due to guidelines and shifting norms in response to restrictions. The pressure on the health service exacerbated referral gaps, leading to an increased reliance on pharmacists to provide care, while specialist care such as occupational therapists or speech therapists were unable to see patients in person.

A research participant said:

Everybody’s afraid as they’re in pain and they’re all worried about how it will be at the end. There’s a fear that they’ll be gasping for air. You have to reassure them that we will do our best to help them and that there’s medication there to relieve those symptoms. They just want to have somebody around them, that they are not on their own.

Paula O’Reilly continued:

The report identifies inconsistencies in the provision of end-of-life care. The huge financial, psychological, physical and emotional pressures placed on both families, carers and healthcare professionals’ is highlighted as a result of lack of resources and system gaps. These impact how healthcare teams interact and how people in the community can access appropriate services, which may result in inappropriate care and treatment for people who wish to die at home.

Another research participant said:

Anytime we ran into a crisis, it was late on a Friday night or during Bank Holiday weekends, and you are left with very limited backup support. It’s all left on you as a carer. There was no coordination of services. It’s very frustrating. To have a parent in severe pain, and trying to get the medication right, we really need quicker access to supports. Ideally, timely phone support from a palliative doctor/nurse would ease the carers’ burden and the distress of their loved one.

Read the full report below.