FOR many people facing life-threatening conditions such as advanced cancer, dementia or motor neurone disease, once the term 'palliative care' is mentioned, it can seem like the end.
Palliative care is offered to people to help with the pain of their condition without treating the cause. It is also offered to patients as end of life care when they are expected to die within 12 months or less.
However, this often difficult and lonely stage in a person's illness needs to be just as carefully managed as when the medical team are actively trying to do all that they can to cure or halt the spread of disease.
The spotlight has recently been turned on this sensitive time for patients by an new all-Ireland survey on palliative care experiences – good and bad – which reveals that there is still room for improvement.
The Let’s Talk About Palliative Care Survey Report found that over two thirds (68 per cent) of people with palliative care needs regarded ‘planning for the future’ as their biggest worry.
Revealingly, half of palliative care users (52 per cent) said they felt frustrated or helpless, while 51 per cent said their emotional and psychological needs were not met.
A further 42 per cent wanted better co-ordination of care or treatment.
The report was coordinated by the All Ireland Institute of Hospice and Palliative Care (AIIHPC).
Jointly commissioned by the Public Health Agency (PHA) in Northern Ireland and the Health Service Executive (HSE) in the Republic of Ireland, the survey took in the views of 528 palliative care service users and carers from across Ireland: 109 in the North and 419 in the Republic of Ireland.
Eileen Wright is one of the volunteer members of the Institute's service community group, Voices4Care.
The 74-year-old from Banbridge, Co Down, has personal experience of helping to provide palliative care as she cared for her husband David until he died five years ago, her sister who had cancer over 20 years ago and her own mother before she died at 96.
"My real interest is to make sure that the voice of the patient can be heard," she says.
"The survey did show a lot of positive comments but I think it showed that a a need for more sensitivity and a lack of communication.
"When people are faced with something as final as what palliative care appears to be, I think its very important to allow them to articulate what's going on within themselves, because that is also in essence therapeutic."
Her southern counterpart, Anne Molloy, stressed: "The survey shows that we must encourage people to exercise personal choice through the timely provision of accessible and appropriate information on palliative and end of life care."
While most of the patients surveyed had cancer, there were interviews carried out with patients with dementia, chronic kidney disease and Parkinson's Disease.
The range of healthcare professionals and carers surveyed included GPs to home helps, chaplains and hospice volunteers.
One comment from a relative carer recorded: “I cared for my Mum who got a late diagnoses for vascular dementia, her affairs were not in order and because of the diagnosis she was deemed unfit to make decisions, her wishes or requests were completely ignored.”
And concern for patients' wishes was also expressed by healthcare professionals judging by this comment:
“I am a nurse in a residential care home. Within the last 16 months an 87-year-old resident with late stage dementia was given a peg tube. It had become very apparent to staff that Mrs S wanted to die and had endured enough but sadly her family insisted that Mrs S be transferred to hospital in which they insisted a peg-feed was inserted.
"Sadly, again poor Mrs S had no say in this and with no pre-planned future healthcare in place, it was left to her family to decide."
According to Karen Charnley, head of AIIHPC, it's hoped that the findings will help further develop palliative care services in the future both here and in the Republic.
"It's often very difficult for people to talk about palliative care and planning for their future," she says.
"While there were a lot of positive experiences highlighted, four in ten received information too little or too late, while 22 per cent said that sensitive issues were avoided completely.
“The research also highlighted the need to build the competences and communications skills of healthcare professionals to support them and those they care for to talk openly and sensitively about care.
"This is particularly important for those professionals who people with palliative care needs most regularly come into contact with, including GPs, nurses and medical consultants.
"We are working with our partners to ensure the dissemination of the findings so that it feeds into the future palliative care policy. We want to ensure that people are supported as early as possible when they are diagnosed with an illness which may limit or shorten their life."
The PHA has promised that the findings and recommendations will be incorporated into the Regional Palliative Care Programme Palliative Care in Partnership.
Health Minister Michelle O'Neill recently said that the report presented "a powerful picture" of positive experiences and negative concerns of people who are living with an advanced progressive illness across Ireland.
She added: "I believe the experiences of the many voices which resonate through this report, and what we can learn from them, will reinforce our commitment to providing quality palliative and end of life care for those who need it".
:: For further information visit Publichealth.hscni.net