We need your help now
Support from readers like you keeps The Journal open.
You are visiting us because we have something you value. Independent, unbiased news that tells the truth. Advertising revenue goes some way to support our mission, but this year it has not been enough.
If you've seen value in our reporting, please contribute what you can, so we can continue to produce accurate and meaningful journalism. For everyone who needs it.
Sign in. It’s quick, free and it’s up to you.
An account is an optional way to support the work we do. Find out more.
By continuing, you are indicating that you accept our Terms of Service and Privacy Policy.
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.
To embed this post, copy the code below on your site
There will never be enough homes in this country for people. The politicians want immigration to continue and the people keep voting them in.
@common sense: Nothing to do with immigration tho, we’ve only had it for like 2/3 years ffs, we’ve never been allowed to build our own houses, they want us in a line waiting to genuflect in front of our multinational developer millionaires.
@common sense: There’s about 240. 000 empty houses in Ireland. Small towns and villages all over rural Ireland and the islands are dying, losing their schools, GPs, post offices, banks and other services due to lack of population. The focus on a couple of large urban centres is the root cause of most of our housing issues. We need more people in our small towns and villages or we will end up losing them completely.
When you present an analysis of anything there’ll be a ‘top performer’ & a ‘bottom performer’, this is hardly earth shattering or news worthy, there’s nothing to be extrapolated from this article as such
@Buster Lawless:
It is informative and interesting for people, especially those searching for a place to live.
80 miles from Dublin, wonder how long it would take a new train to make that trip! 45 mins?
@Thesaltyurchin: 160 miles away so 90 mins for me I suppose.
@Thesaltyurchin: I’d say 45 years more like if you’re lucky. Not counting consultants reports on the pricing of the previous consultants report
Where?
I have fam in MN most there build their own houses. The only ones that dont generally are the new comers.
So there’s 10,000+ people in Monaghan then !
@Kevin Kerr: report to mammy all you like, I’ll never back down from your type…… I’ll ALWAYS CALL your type out….I have daughters, sisters, nieces etc & your sickening misogyny should NEVER be acceptable
@Buster Lawless: you are a despicable individual. I never condoned that attack, and you know it. You said this morning that you have a screenshot – so tell me, what does it say?
@SYaxJ2Ts: lol, you want to run to momma y et again????…… I tried, I really tried to leave your accounts ‘unmuted’ but you & your type are simply beyond redemption…..so it’s Muted yet again , cheerio
@Buster Lawless: seek help
Use precise geolocation data. Actively scan device characteristics for identification. Store and/or access information on a device. Personalised advertising and content, advertising and content measurement, audience research and services development.
These cookies are necessary for the website to function and cannot be switched off in our systems. They are usually only set in response to actions made by you which amount to a request for services, such as setting your privacy preferences, logging in or filling in forms. You can set your browser to block or alert you about these cookies, but some parts of the site will not then work.
These cookies may be set through our site by our advertising partners. They may be used by those companies to build a profile of your interests and show you relevant adverts on other sites. They do not store directly personal information, but are based on uniquely identifying your browser and internet device. If you do not allow these cookies, you will experience less targeted advertising.
These cookies enable the website to provide enhanced functionality and personalisation. They may be set by us or by third party providers whose services we have added to our pages. If you do not allow these cookies then these services may not function properly.
These cookies allow us to count visits and traffic sources so we can measure and improve the performance of our site. They help us to know which pages are the most and least popular and see how visitors move around the site. All information these cookies collect is aggregated and therefore anonymous. If you do not allow these cookies we will not be able to monitor our performance.
Cookies, device or similar online identifiers (e.g. login-based identifiers, randomly assigned identifiers, network based identifiers) together with other information (e.g. browser type and information, language, screen size, supported technologies etc.) can be stored or read on your device to recognise it each time it connects to an app or to a website, for one or several of the purposes presented here.
Advertising presented to you on this service can be based on limited data, such as the website or app you are using, your non-precise location, your device type or which content you are (or have been) interacting with (for example, to limit the number of times an ad is presented to you).
Information about your activity on this service (such as forms you submit, content you look at) can be stored and combined with other information about you (for example, information from your previous activity on this service and other websites or apps) or similar users. This is then used to build or improve a profile about you (that might include possible interests and personal aspects). Your profile can be used (also later) to present advertising that appears more relevant based on your possible interests by this and other entities.
Advertising presented to you on this service can be based on your advertising profiles, which can reflect your activity on this service or other websites or apps (like the forms you submit, content you look at), possible interests and personal aspects.
Information about your activity on this service (for instance, forms you submit, non-advertising content you look at) can be stored and combined with other information about you (such as your previous activity on this service or other websites or apps) or similar users. This is then used to build or improve a profile about you (which might for example include possible interests and personal aspects). Your profile can be used (also later) to present content that appears more relevant based on your possible interests, such as by adapting the order in which content is shown to you, so that it is even easier for you to find content that matches your interests.
Content presented to you on this service can be based on your content personalisation profiles, which can reflect your activity on this or other services (for instance, the forms you submit, content you look at), possible interests and personal aspects. This can for example be used to adapt the order in which content is shown to you, so that it is even easier for you to find (non-advertising) content that matches your interests.
Information regarding which advertising is presented to you and how you interact with it can be used to determine how well an advert has worked for you or other users and whether the goals of the advertising were reached. For instance, whether you saw an ad, whether you clicked on it, whether it led you to buy a product or visit a website, etc. This is very helpful to understand the relevance of advertising campaigns.
Information regarding which content is presented to you and how you interact with it can be used to determine whether the (non-advertising) content e.g. reached its intended audience and matched your interests. For instance, whether you read an article, watch a video, listen to a podcast or look at a product description, how long you spent on this service and the web pages you visit etc. This is very helpful to understand the relevance of (non-advertising) content that is shown to you.
Reports can be generated based on the combination of data sets (like user profiles, statistics, market research, analytics data) regarding your interactions and those of other users with advertising or (non-advertising) content to identify common characteristics (for instance, to determine which target audiences are more receptive to an ad campaign or to certain contents).
Information about your activity on this service, such as your interaction with ads or content, can be very helpful to improve products and services and to build new products and services based on user interactions, the type of audience, etc. This specific purpose does not include the development or improvement of user profiles and identifiers.
Content presented to you on this service can be based on limited data, such as the website or app you are using, your non-precise location, your device type, or which content you are (or have been) interacting with (for example, to limit the number of times a video or an article is presented to you).
With your acceptance, your precise location (within a radius of less than 500 metres) may be used in support of the purposes explained in this notice.
With your acceptance, certain characteristics specific to your device might be requested and used to distinguish it from other devices (such as the installed fonts or plugins, the resolution of your screen) in support of the purposes explained in this notice.
Your data can be used to monitor for and prevent unusual and possibly fraudulent activity (for example, regarding advertising, ad clicks by bots), and ensure systems and processes work properly and securely. It can also be used to correct any problems you, the publisher or the advertiser may encounter in the delivery of content and ads and in your interaction with them.
Certain information (like an IP address or device capabilities) is used to ensure the technical compatibility of the content or advertising, and to facilitate the transmission of the content or ad to your device.
Information about your activity on this service may be matched and combined with other information relating to you and originating from various sources (for instance your activity on a separate online service, your use of a loyalty card in-store, or your answers to a survey), in support of the purposes explained in this notice.
In support of the purposes explained in this notice, your device might be considered as likely linked to other devices that belong to you or your household (for instance because you are logged in to the same service on both your phone and your computer, or because you may use the same Internet connection on both devices).
Your device might be distinguished from other devices based on information it automatically sends when accessing the Internet (for instance, the IP address of your Internet connection or the type of browser you are using) in support of the purposes exposed in this notice.
The choices you make regarding the purposes and entities listed in this notice are saved and made available to those entities in the form of digital signals (such as a string of characters). This is necessary in order to enable both this service and those entities to respect such choices.
have your say