A MAJOR PUBLIC information campaign to highlight how palliative care improves the quality of life of a person with an incurable illness takes place across the country this week. It is an all-island campaign that is being coordinated by the All Ireland Institute of Hospice and Palliative Care (AIIHPC).
As a member of Voices4Care – an initiative which involves people receiving palliative care, carers and the wider community in the development of the sector – I believe this week provides an important opportunity. It is an opportunity for conversations and education towards a better understanding of a palliative care approach and the benefits it can bring.
I always thought palliative care was for patients with cancer, luckily I learned early on that it was for anyone who had a debilitating or incurable illness no matter what their age.
The best quality of life possible
When my own mother, Angela, was diagnosed with vascular dementia, it was wonderful to be able to ask for help and give Mum the best quality of life possible. Mum was very aware of what was happening all around her but her ability to cope was diminishing, her balance, speech and rational thinking were being affected.
Palliative care is about quality of life for your loved one, it’s not just about the medications. It considers the mind, body and spiritual needs of the person.
It’s also important to get an early diagnosis. Unfortunately there is still a taboo around dementia, some GPs can be reluctant to diagnose and discuss the possibilities with their patients. It makes life so much more comfortable for your loved one, so much more relaxed; everyone will have some understanding of what’s happening and what the future holds. A palliative care approach gives insight into the stages ahead and what services are available.
Palliative care was a great comfort for my mum and it also greatly helped our extended family and friends to have that special time.
Misconceptions about palliative care
Palliative Care Week aims to change the common public perception that palliative care is about pain relief for older people during the final days of life, to an understanding that including a palliative care approach as part of a medical care plan helps to achieve the best possible quality of life for a person with an incurable condition.
The findings of a survey of users of Palliative Care called ‘Let’s Talk About’ have been launched as part of the awareness raising drive. The survey involved a study of experiences of Palliative Care among patients, carers and families across the island of Ireland undertaken by AIIHPC.
The survey showed that people want to discuss and plan for the future – 64% of respondents said that ‘planning for the future’ was the biggest practical worry in their experience.
When asked about what needs were least well met in their experience 50% said their ‘emotional and psychological needs’.
The need for better and clearer communication was also highlighted – 33% said that in their experience, they received too little information too late. Promisingly, 50% said they received information clearly and sensitively, but others felt the issues were either avoided or jargon was used.
Some 44% of respondents said family were involved and respected, 19% said family were put under too much pressure and 18% said family were forgotten about or excluded.
The campaign is being supported by the Department of Health, HSE and providers of hospice and palliative care across the country, as well as all health agencies in Northern Ireland.
This week, take the opportunity to find out more about palliative care to help ensure the best possible quality of life for people with incurable illnesses and for their carers, family and friends.
Carmel Geoghegan is a member of patient group Voices4Care. More information at is www.palliativecareweek.com and you can follow on Twitter at #pallcareweek
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