Let's Talk About Palliative Care
Palliative care aims to offer comfort and support to patients and their families including caring for emotional and spiritual needs. The overall aim of All Ireland Institute of Hospice and Palliative Care (AIIHPC) is to improve end-of-life care in all of Ireland which led to the “Let’s Talk About” initiative.Let’s Talk About
The realities of living with a progressive, long term incurable condition is a difficult but necessary conversation. Using the experience of users and carers in shaping the delivery of human services is referred to as “experience shaped design”.
The “Let’s Talk About” survey had three sections:
- Firstly respondents were asked to write about a palliative care experience - giving it a title then summing up three key themes about their experience.
- Secondly respondents were to interpret the significance of their experience using eight questions in the form of triangles each deemed important to palliative care services.
- The final section consisted of demographic and profile questions.
Comparison of cancer and non-cancer responses
The survey data allowed for comparisons between people’s experiences of palliative care according to their condition or illness. Two distinct groups were compared – those whose condition(s) included cancer and those whose condition(s) didn’t include cancer. The family and close friends of the non-cancer group expressed feeling a lack of support as their stories indicate they were less likely to be involved or respected and felt that they were put under too much pressure. Perceived barriers for non-cancer patients in accessing palliative care included the unpredictability of the disease, difficulties with referral criteria and the lack of disease specific expertise.
1. The difference good care makes
2. Poor experience of care
3. Poor communication.
Sub-themes included talking about dying and a good death, family inclusion and home support or lack thereof, communication and information, managing symptoms and isolation.
The survey responses provided rich data and indicated that personal experience of palliative care, both good and bad, revealed key themes. Of the 528 respondents 68% indicated that planning for the future was their biggest worry while over half felt frustrated or helpless. At least one in three felt they had too little autonomy and one in five revealed they felt that their family and friends were excluded. Too little and often too late was the response to questions on information provision by over one third and almost a quarter felt that sensitive issues were avoided altogether.
• Avoidance of talking about the issues increases frustration and helplessness
• Information given too little, too late increases frustration and helplessness
• Clear and sensitive communication increases the feeling of being supported
• Ability to make choices increases the feeling of being supported
• Better co-ordination of care and treatment helps with physical symptom management