A new report has found that patients in palliative care have been left feeling frustrated or helpless by their experience in the services across Ireland.
The Let's Talk about Palliative Care Suvery Report identified 'planning for the future' as the biggest concern for 68% of palliative care users, in particular planning for end of life, and putting in place advanced care directives.
The survey charted the experiences of 528 palliative care users (419 in the Republic of Ireland and 109 in Northern Ireland), and was coordinated by the All Ireland Institute of Hospice and Palliative Care (AIIHPC).
Although the survey showed many people felt supported by care services, over half said they felt frustrated and helpless, with 51% saying their emotional and psychological needs were not met.
One fifth of those surveyed said sensitive issues were avoided completely during care, and 42% wanted better coordination of care or treatment.
One carer told researchers that waiting times in hospitals "became and ordeal, with three hours the average waiting time to see a doctor".
Another former carer spoke of the care her 63-year-old sibling received in the final days of her life: "The night nurse at the hospice had exhausted all the pain relief prescribed for her and rang the hospital for further guidance.
"There was nowhere to avail of the pain relief prescribed, and the doctor on call refused to call out to the hospice with this pain relief medicine.
"My sister groaned out all night until morning when she breathed her last. This memory for my family was horrendous", she added.
Conversely, the report also highlighted many positive experiences of palliative care.
34% of those surveyed said they had experience of information being communicated timely or appropriately, with nearly half saying they felt communication was clearly presented and sensitively put.
One former carer had very positive things to say about Palliative Care, stating they had "involved the family every step of the way and showed the ultimate respect for mum always speaking with her and not at or about her".
They also gave the family "confidence in the level of care" their mother was receiving and afforded her a "quality of life to enjoy the time she had left with her family."
Speaking to Newstalk Breakfast, Head of the AIIHPC Karen Charnley said the results of the survey show that palliative care "is not just about caring for an illness and it’s physical symptoms".
She added, "Good care puts the person at the centre and takes into account how their illness affects them physically, socially, emotionally and spiritually, as well as the impact on the family".
Based on the results of the survey a number of recommendations were proposed to improve the quality of care for users.
These include proposals for policy makers to ensure the integration of palliative care across the health system so people are supported as early as possible, support for the individuals, their families or carers to plan for the future, and the provision of an information and awareness raising campaign targeted at medical professionals.
Charnley said the report will help palliative care providers in the future development and design of services, and it will inform the work the All Ireland Institute of Hospice and Palliative Care.
