Palliative Care
What is it and who is it for?
e information in this booklet is written for people who have been diagnosed with a life-limiting condition and it is intended to provide information about palliative care as a holistic approach that aims to make you feel comfortable and supported throughout your illness.
is information will also bring useful insights for the people close to you.
Contents
What is palliative care?
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Does having palliative care mean I'm going to die soon?
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Who provides palliative care?
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Who can access palliative care?
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Do you have to be in a hospice to access palliative care?
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How much is palliative care?
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Is palliative care the same as end-of-life care?
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IHF resources for end-of-life care and planning
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What is palliative care?
Palliative care is person-centred holistic care which supports your physical, psychological, emotional, and spiritual wellbeing. It helps to improve or maintain your quality of life when diagnosed and living with a life-limiting illness. Palliative care also supports your family or significant people in your life by facilitating open and honest conversations to ensure that treatment options and care decisions align with your preferences and values. Palliative care provides symptom control so you have the added reassurance of knowing symptoms associated with your condition can be managed in a timely manner. Palliative care is supportive care offered throughout the progression of all phases of your illness. It will help to improve your ability to participate in your daily activities and hobbies.
Palliative care focuses on your best quality of life. It is comprehensive, compassionate and person-centred.
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Does having palliative care mean I'm going to die soon?
is is often the first thought people have when they hear the words ‘palliative care’. However, palliative care takes a holistic approach, focusing on improving the quality of life for you and your family throughout your illness. A prognosis on life expectancy is very difficult to determine at the outset of any diagnosis, so whilst your illness may not be curative, it may be managed for a very long time. Palliative is not synonymous with end-of-life care only, it is much more than this. Palliative care isn’t just for end of life; it’s about living your best life and remaining involved in all decisions as your illness progresses.
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Palliative care is about living well and planning for the future. Irish Hospice Foundation’s ‘ ink Ahead Planning Pack’ helps you discuss and record your wishes and preferences. Visit thinkahead.ie for further information.
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Who provides palliative care?
Palliative care provision is the responsibility of a multidisciplinary healthcare team. is team will provide care that is tailored to meet the individual needs of the person and their family. Depending on where your care is being provided, your team may include members of Hospital, Primary and Community care teams that are made up of Doctors, Nurses, Social Workers, Carers, Pharmacists, Speech and Language erapists, Occupational erapists, Counsellors and other professionals. Specialist Palliative Care (SPC) teams become involved when complex symptom management is required. ese teams can be hospital or community based. Many Community Palliative Care Teams are based at your local hospice, which provide additional services like symptom control admissions, outpatient services or day-care services. Palliative care is provided at different levels depending on your illness. As your illness progresses and if your symptoms become complicated you may need more specialised care from a specialist palliative care team.
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Within a healthcare team, there are three levels of palliative care provision with increasing specialisation from Level 1 to Level 3.
Level 1
Level 1: is is a Palliative Care Approach and is provided in any location - at your home, in hospital or in a nursing home by all healthcare professionals as part of their role. Care at home is usually provided by your Primary Care Team. Level 1 includes managing basic symptoms and providing educational supports for you and your family. Example: Being linked in with your GP or Public Health Nurse on the Primary Care team will provide you with signposts to other healthcare professionals and information resources for you and those closest to you.
“We cannot change the outcome, but we can a˔ect the journey.”
Ann Richardson
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Level 2
Level 2: is is Palliative Care which can be provided in any location - at your home, in hospital or in a nursing home using a non-specialist palliative care approach. Level 2 Palliative Care is provided by your GP/PHN/RGN and Carer who have additional knowledge, training and experience of the palliative care principles and use this as part of their role.
If you feel more unwell, you should continue to speak with your healthcare team about managing your symptoms and issues that affect your quality of life.
Example: Your healthcare team will support you in learning how to manage symptoms you may experience, focusing on reducing distress to increase the amount of comfort and control you feel.
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Level 3
Level 3: is is Specialist Palliative Care and is provided in any location - at your home, in hospital, or in a nursing home - by specialist palliative care teams that are made up of healthcare professionals who work solely in palliative care and have extensive knowledge and skills in this specialty. As with Levels 1 and 2 palliative care, this can be provided to you at home, in the community or in a hospital. You may be discharged from a Level 3 specialist care if your needs become less complex; you can be referred again should you need it. Example: e Specialist Palliative Care Team will visit you in your place of care and complete a symptom control assessment. ey will then link in with your healthcare team regarding any changes to medication or treatment that is needed and will do a follow-up assessment to determine their level of involvement at this stage.
Most of your palliative care needs will be met at Levels 1 and 2. End-of-life care can be provided at Levels 1, 2 and 3.
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Who can access palliative care?
Palliative care is for anyone, at any age, who is living with a life-limiting illness. e term ‘life-limiting illness’ refers to any disease, condition or illness that is progressive and cannot be cured. Palliative care focuses on improving and maintaining quality of life for people who are facing the challenges associated with all life-limiting illnesses. If you have been told you have a life-limiting illness, you can access palliative care in Ireland, and you can have palliative care at any stage of your illness at the level required. Ideally, Level 1 palliative care should be offered to you and begin at the time of your diagnosis and continue throughout your life-limiting illness. In the past, palliative care was associated with the treatment of patients who had a cancer diagnosis. However, it is also available if you have other types of advanced life-limiting illnesses such as Parkinson’s disease, motor neuron disease, dementia, heart failure, stroke, renal, respiratory conditions or other. Palliative care can be integrated into care plans early in the course of your illness and can be provided in conjunction with other treatments intended to prolong life, such as dialysis, chemotherapy, and medication. Providing palliative care at an early stage in a person’s illness can support better management of symptoms and complications as well as in planning for future care.
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Do you have to be in a hospice to access palliative care?
No. Palliative care is provided in hospitals, in residential centres, nursing homes and/or your home.
• In hospital: your healthcare team may manage your treatment or refer you to the Specialist Palliative Care Team. is initial consultation will determine your future care needs whereby you may be referred for ongoing specialist palliative care follow-up in hospital, or the team will inform your GP and Primary care team to support your needs when you are being discharged. • In a residential care setting or nursing home: the staff there and/or your GP are able provide palliative care. ey will refer you to the Community Palliative Care Teams to be involved in your care if you are experiencing more complex symptoms. • In your own home: your GP or healthcare team can arrange for a referral to the community-based Specialist Palliative Care Team to complete an assessment to improve the symptoms you are experiencing. is assessment may be offered to you through hospice day services or with a Specialist Palliative care Consultant in the outpatients Department. is might involve you attending day services where available at your local hospice or a home visit from the Community Palliative Care Team. ese visits may be required more often as you near end of life. e Community Palliative Care Team will arrange, if possible, free night nursing care to support you and your family in your final days. is provides reassurance and respite for your families and loved ones
caring for you at home. See hospicefoundation.ie/nnc for details.
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How much is palliative care?
Most palliative care services are free for all patients and their families in Ireland. Where people have private medical insurance, their insurer may be asked to contribute towards the cost of their care. Depending on the stage of your illness, you may be entitled to a medical card, which is applied for with the support of your consultant, GP or social worker, who facilitate the application process to the HSE.
Be sure to check in with your GP and local primary care team about what other free services may be available in your local area.
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Is palliative care the same as end-of-life care?
No. End-of-life care is an important part of palliative care provision and usually commences when a person is in their last year of life, whereas palliative care is much broader and can last for longer. End-of-life care offers treatment and support for people who are near the end of their life to ensure their comfort and dignity. e aim is to allow someone to be as comfortable as possible in the time that they have left and making sure their preferences or wishes are respected as part of the care that they receive.
Palliative and end-of-life care also includes supporting your family, carers and those who are important to you.
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IHF resources for end-of-life care and planning
Information and Support Line Facing a life-limiting illness or caring for a friend or family member with one can be both a challenging and uncertain time for anyone. e Information and Support Line (1800 60 70 66) is a confidential line that provides signposting, practical supports and resources about end-of-life care, advance care planning and palliative care in Ireland. For more information, visit: https:// hospicefoundation.ie/our-supports-services/healthcare- hub/information-and-support-line/ Nurses for Night Care We fund the Nurses for Night Care service for people dying with illnesses other than cancer. Nurses for Night Care enable people with diseases like dementia, motor neurone disease, advanced respiratory disease, heart failure and end stage kidney disease to receive expert nursing care and support at night in their own homes in their final days. It also provides reassurance and respite for families and loved ones caring for someone at home. See hospicefoundation.ie/nnc Dying Well at Home Many people would like to stay in their own home or in a relative’s or friend’s home when they are approaching the end of their lives. For those who can manage to be at home in the final months, weeks and days of their lives, they can be supported to ‘die well’ at home by a professional carer, and by loved ones. People often take on the role of a carer without any training and with little knowledge of what being a carer at end of life involves. at is why the Dying Well at Home team at IHF developed this brochure which contains useful information and practical tips to help you in your caring role. See hospicefoundation.ie
IHF Resources and information to support people who are bereaved
When Someone you Care about is Dying at Home
What to Expect
Practical information when caring for the person
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DWAH eLearning Programme At Irish Hospice Foundation, we are working to ensure the best end-of-life and bereavement care for all. A key part of our role is to provide education and training to healthcare and social care professionals and volunteers, as well as to members of the public. One of the ways we do this is through eLearning, which people can engage with
in their own time. For full details see https://elearning.hospicefoundation.ie/
If someone you care abut is dying in a nursing home or other care settings, IHF have developed two other booklets which may help you know what to expect. We understand that this is a very emotional and challenging time for you and hope these booklets make it a little easier for you. Both of these booklets are available to download - see details below.
When someone you care about is dying What to expect
IHF Resources and information to support people who are bereaved When Someone You Care About is Dying in a Nursing Home What to Expect When Someone You Care About is Dying in a Nursing Home - What to Expect Available at: caru.ie
When someone you care about is dying - What to Expect Find out more at: hospicefoundation.ie
caru.ie
Think Ahead A practical tool and customisable guide for advance care planning and end of life. It helps a person document their healthcare choices and personal wishes, for a future time when they may not be able to make or express those decisions. ink Ahead is in full alignment with the recently commenced Assisted Decision-Making (Capacity) Act 2015. Palliative care isn’t just for end of life; it’s about living your best life and remaining involved in all decisions as your illness progresses. Palliative care is about living well and planning for the future. Irish Hospice Foundation’s ‘ ink Ahead Planning Pack’ helps you discuss and record your wishes and preferences. See www.thinkahead.ie
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Notes
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Notes
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is information booklet has been collated by healthcare staff in Irish Hospice Foundation who have combined expertise in the delivery of people-centred care through their nursing, social work, specialist palliative care, and health promotion background spanning over many years. All are advocates for compassionate and holistic care for patients and families. Authors of this booklet at Irish Hospice Foundation: Marese Damery, Programme Manager Healthcare, Dying Well at Home Nicole Forster, Development Officer Healthcare, Dying Well at Home Sharon O’Brien - Regional Lead CHO 8 for Caru – a continuous learning programme supporting Care and Compassion at End of Life in Nursing Homes
Refreshed April 2025.
Irish Hospice Foundation Morrison Chambers, 32 Nassau Street, Dublin 2, D02 X627. (01) 679 3188 | info@hospicefoundation.ie | hospicefoundation.ie
Registered Charity Number 20013554
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