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A NEW REPORT has found that some patients in palliative care are being left in pain, while one family said trying to find out what services are available is like “dealing with the mafia”.
The Let’s Talk About Palliative Care Survey Report found that 52% of palliative care users said they felt frustrated or helpless during the process.
The survey includes the experiences of 528 palliative care service users and carers from across the island (419 in the Republic of Ireland and 109 in Northern Ireland).
One woman described how her 63-year-old sister was left groaning in pain the night before she died as the doctor-on-call refused to call out to the hospice with the extra pain relief medicine required.
“This memory for my family was horrendous,” she told researchers.
Another carer described sitting with a patient for almost an hour during which there was a very strong smell of excrement as she had soiled herself but not cleaned up. They also described how:
The patient’s dirty washing was left in bags. Her family lived far away so washing was left in locker beside the bed for days.
‘He may as well have been invisible’
About 51% of respondents to the survey said their emotional and psychological needs were not met and 42% wanted better co-ordination of care or treatment.
One family described how they had to pay for private carers to go into a hospital as their father was not receiving the care he needed.
The elderly man, who suffers from Alzheimer’s and vascular dementia, was transferred to a public ward in order to ensure some supervision.
He had been very distressed in the private room and had fallen when trying to climb out over the side rails of bed. He was not found for some time. In addition he had to be strapped into a chair with his feet immobilised to prevent him getting up. Nobody ensured he had eaten his meals and he was left unsupervised for long periods.
“His personal care was overlooked. There is no specialist unit to facilitate his care. He may as well have been invisible. Carers had to be paid to go into the hospital to ensure his safety and ensure basic needs were being met. It was distressing for my father and those around him.”
Other expressed that they felt they were being passed on from service to service while one person described how it felt like they were ‘dealing with the mafia’ when trying to find out what services are available.
“My father was diagnosed with a brain tumour after just overcoming lymphoma. When he was diagnosed he lived with my invalided mother… his wish was to go home and die at home. I work in the HSE and I had to make all the relevant arrangements for him to go home with beds, home help and a palliative nurse … both my sister and I knew what we were dealing with even though we are not nurses but for a family that didn’t you are left all alone.
It is not a nice place to be in. We saw the public health nurse three times in that three weeks. I feel it’s like dealing with the mafia trying to find out what you can get what is available and where and how to get it. People taking care of people need a back up they don’t need to feel alone.
The study also showed that avoiding talking about the issues, or ‘too little information given too late’ increases frustration and helplessness.
One patient described how, “I asked my doctor what was my prognosis. He told me that the average age of survival with my type of cancer was six to 12 months.
I was 40 with two young children. I know he answered my question but he gave me no hope. Two-and-a-half years later I am still here.
‘The man was so happy, you have no idea’
The survey also highlighted positive experiences of palliative care in Ireland.
One family member described how they fought for their father to get home, explaining how he was a farmer so hated being cooped up in a hospital or nursing home:
We got him home, the man was so happy, you have no idea, we had great support from home help, someone used to sleep the night and we all took turns at weekend. That time was so precious to me, I have great memories, he survived nine months.
The report also heard how moving to a hospice in the final stages of one woman’s life meant she ‘started to live again’:
She moved to the hospice where she started to live again. She got a hairpiece and a wheelchair. She spent hours in the gardens.
“She entertained her son, daughter and grandchildren, as well as her sisters and nieces and nephews.
She arranged her funeral. On the day she died she attended an ‘indoor’ family picnic and died that afternoon with everyone close to her present.
‘Too little, too late’
The survey also found that more than two thirds (68%) of people with palliative care needs said that ‘planning for the future’ is their biggest worry.
The All Ireland Institute of Hospice and Palliative Care’s Karen Charnley said:
The survey findings challenge those providing care to respond in ways which best support people and their families at this time in their lives. It also challenges wider society to talk and think more about palliative and end of life care.
“The survey reflected many positive experiences of palliative care as well as highlighting where we can improve. The survey found that 37% said they received too little information too late, while 22% said that sensitive issues were avoided completely. However, 48% felt communicated with clearly or sensitively and 34% experienced information being communicated timely or appropriately.”
HSE director of advocacy Greg Price said: “The findings of this research will be reviewed to inform public policy and services for palliative and end of life care in Ireland. We can improve services by aligning them closer to the expressed needs and wishes of patients, their carers and families.”
The survey was coordinated by the All Ireland Institute of Hospice and Palliative Care (AIIHPC) and jointly commissioned by the HSE in the Republic of Ireland and Public Health Agency (PHA) in Northern Ireland.
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The doctor refused to call out to the hospice with the pain relief required? That doctor should be struck off. What part of Do No Harm does this “doctor” not get. To be groaning in pain on your death bed is f¥<£ing unacceptable and heads should roll for that one.
From the moment my mam was diagnosed with terminal pancreatic cancer she was assigned a palliative care team, hand on my heart I can say in all honesty that the care, warmth and genuine help and concern she received was faultless. As mam was from tipp but came to live with us in Waterford there was some crossover care between the two teams, it was seamless and professionally organised. From the local doctors to the public health nurses, the occupational therapists to the lovely caring palliative care nurse and the pharmacists, all excellent. When they get it right they do a superb job. All I can say is thank you.
Molly coddled you were blessed. My Mam asked for help from the hospice. No sorry couldn’t help. I asked her GP what would I do Jeff she died during the night. I was told to put the pillow from under her head under her chin. The morning of her funeral the hospice Dr arrived to Assess her.
So sorry that was your experience Mary, maybe we were just very fortunate that the team assigned were all genuinely caring and worked incredibly well together. Our experience should be the norm not the exception and I am truly shocked at some of the complaints in the article and comments.
Hospice homecare teams are run by hospices which rely 100% on charity funding. Unfortunately the less funding the less doctors and nurses which can leave the teams over whelmed. They truly do a wonderful job.
Deborah that may be the case in hospice home care but the palliative care team assigned was totally under the auspice of the HSE, even the hospice where mam spent the last month of her life was run and staffed by the HSE. Sometimes you have to give credit where credit is due.
Can honestly say the palliative care team were excellent when my grandfather was sick and only for them he could have not fulfilled his wish to die peacefully at home. Visited the house 4 times daily could not have asked for more really.
It all goes back too accountability which does not seem to be in the Irish mentality.
A friend’s partner recently died from cancer in a leading Dublin hospital. Due to extreme under staffing, almost all care was administered by family and friends. The surviving partner had to be at his side around the clock and to be sure, when she was not there, that there was someone else there.
There were problems with hygiene, disgusting dirty toilets, lack of changed bed linen, desperately bad pain management and a total indifference of the nurses and doctors who were past caring as result of stress, over work and simply too many patients to deal with.
Full details were sent to the HSE and copied to HIQA. Only acknowledgements have been received.
We are told that only the Irish Hospital Patients Assiciation have any clout.
We have no confidence on HIQA.
Awful to hear that. The palliative care teams who looked after my parents were both wonderful. I really couldn’t have asked for better. I was incredibly lucky. I can’t imagine how I’d have dealt with something like you describe at that time. I had my own run in with HIQA before it that and I had to agree that they’re next to useless. My mother was herself ill at the time and decided not to pursue a case over how my father was treated in hospital. She didn’t want to spend the last months of his life and the last while of her own dealing with it.
The HSE is an absolute mess. There are some wonderful people working in it but they really don’t have the support of the structure they work within. in most cases it’s down to their own hard work that we receive such good care, sadly that doesn’t happen in all cases.
Sorry to pry but St James by any chance?
Connolly in my case.
My gran died in Connolly eventually but the care was fantastic. Previously she had been in the Mater where she was just abandoned. Blanch deffo got a few more years out of her. My other gran was killed by the Mater, treating her for a stroke when she had an infection.
You should complain to the Ombudsman Peter Tyndall. HIQA will not respond to “individual” complaints but the Ombudsman office will investigate them . But PLEASE advocate for a comprehensive and INDEPENDENT patient safety office also! The latest plan from this government and the last seem to revolve around a more streamlined “complaints” process only and one that will be part and parcel of the DOHC .The HSE have simply replicated this agenda.We need INDEPENDENT patient voices at the heart of decisions around end of life care,service provision and chronic disease management /GP care and the rest…..t! NO other group is so excluded in the planning of a service delivery! Think of Education…….National Students Council,National Primary School Parents,National Secondary School parents……….National Patients….????
Believe me , working for the HSE is just a crap. You try your best but you really get to see first hand how little the HSE actually give a sh*t about patients or service users as they prefer to call them . As long as there are loads of suits with plenty of pay that’s all they care about.
My nanny passed away recently & have to say the palliative care she received was amazing. And not just her: the support given to my mam was fantastic. Just truly kind. Insisting my mam had a cup of tea & a biscuit & telling her to go home & get a few hours sleep. Good people. Really impressed all of us
Why should we be surprised? Every other part of the Irish Health Service is a disgrace so why should palliative care be any different? It is a third world system that is underfunded and staff(frontline staff, I mean) overworked.
I think is important to explain the difference between palliative care and end of life care. Is not the same and people get frightened when hearing the word “palliative”. Sadly, there aren’t enough people hired or trained to provide support.
Thank is true Diana, but depending on the diagnosis and prognosis of the illness one often leads to the other, our experience was initially palliative, managing the pain and symptoms and giving some manageable quality of life to the patient.. Then when the cancer began shutting down the organs and death was inevitable it became end of life care for a month in a hospice.
This wasn’t the experience we had with them . We found the whole team wonderful and we would’ve been lost without them at the time . I am forever grateful to them for all the help and support and even all the little things that mean so much when you’re going through something like that . It takes a special kind of person to do what they do ..
This article is truly very disturbing and upsetting, we are very hypocritical in the running of this country.
our commitment to our elderly, sick and those that need end of life care is disastrous …..it is illustrated well here with so few comments on the journal…..true there are some very caring people looking after their clients as best they can..but they are under resourced and some work for homes where the bottom line is profit!
BUT….worst of all is the “push” to recruit ” anyone” into this industry……. one single level 5 FETAC certificate should not be enough to look after some one who is terminally ill or dying and there should be a decent knowledge of the english language….it is sickening to observe what is going on with regard to our elderly and vulnerable citizens and those that have the power do not care……
Terribly negative article , my god glad some of the comments are positive ,
Get you living will in order and book your flight to Switerzland and If you have no one to leave your
few quid to in your will then leave it to the Simon DONT let those C**** in the HSE or DE get their hands
on it
@liam. Excellent advice.
They want to control before you’re born and before you die and their nefarious tentacles are all over education and healthcare still in 2016.
The HSE is all about numbers – people or care does not come it play – budgets and the lack there off that’s what our healthcare system is about – the count beds not the people in them. We have one charity after another helping to take care of all our vulnerable people in society and the HSE squanders money like its going out of fashion – how mush has it cost the HSE is the past few years in one law suit after another because they can hold their hand up when they make a mistake – when doctors differ people die!
@charliegrl80 you are spot on there….budgets for everything except what its needed for!
Saturday and Sunday are the worst days to die at home in Ireland. My 52 year old brother took bad a 3am on a Saturday with bowel cancer. The on call doctor arrived around 5am but refused to give him morphine instead giving him a drug that is given to pregnant women for pain. He wriggled in agony until the hospice nurse arrived around 10.30am. She connected a morphine pump up and he settled down and passed away peacefully shortly afterwards. She has to do the work of several hospice nurses at weekends as they have a limited crew. Huge pressure on the hospice staff who do fantastic work.
Where can we do the survey? It’s absolutely true what another post has said…dying at the weekend here is a disaster. There is nobody around, everyone that is is on call and really you’re just left.
Don’t die on the run up to Christmas, as the doctors and nurses who give constant care, go home for Christmas. You are then left with doctors and nurses who
1. Do not know the patient
2. or their history, so you have to repeat it,even though they are holding the patients notes.
have your say