Reflective Piece on a Carer’s Involvement and Contribution to PalliatHeartSynthesis: Palliative Care in Heart Failure Project

Why I think this project is important, and why I as a carer, wanted to be involved

My father had Chronic Heart Failure (CHF) and died in June 2022 after many years of poorly controlled symptoms. When he died, we, as a family, wanted to be involved in palliative care in some way to make a difference and help someone or their families have a more positive palliative and end-of-life experience.

When Tracey approached me about the ongoing project and that it was looking at CHF and palliative care, I knew right away that it was the perfect opportunity to be involved and influence change


Key barriers to integrating palliative care and heart failure, and key solutions

In hindsight, I can now see how Dad may have benefited from palliative care at an earlier stage of his illness. I suppose this didn’t happen for several reasons. The main one I see is that firstly we were never given a diagnosis of CHF although it is now obvious that was what his diagnosis was.

There is certainly a lack of understanding from both the public and medical community about what palliative care is and what it isn’t. The perception is that palliative care is an end-of-life process and until that changes then the benefits of it won’t be seen or offered to those who can benefit from it.

“Dad would have benefited from palliative care support certainly in his last year and it would have prevented unnecessary hospital admissions that were so distressing to my Dad and our whole family.”

Dad always felt that his medication would eventually be balanced, and his symptoms would ease. If he and we had been better informed that his condition was palliative, then we would have had a better understanding of his prognosis and we would have had more realistic expectations. Dad wouldn’t have been waiting to “get better” and could have lived his life with a different mental attitude and accepted his condition and symptoms more readily and looked for other ways to relieve his symptoms or to come to terms with their limitations.


Solutions for integrating palliative care and heart failure

Awareness for both the general public and healthcare professionals is the first and most important step on this journey. This project has made great advances and has the all-important data to back up its recommendations, but next step is how to implement it in a practical manner.

Building networks between services like physiotherapy, pharmacy, dietetics and GPs to coordinate their services to offer a package of care tailored to the patients’ needs is key.

Patient & Public Involvement and involvement of those people living POSITIVELY PALLIATIVE lives is also key to changing public attitudes and perceptions.

“As heart disease is one of the most prevalent health conditions in UK/Ireland then integrated care pathways are essential to ensure improved quality of life for its sufferers and to reduce unnecessary hospital admissions in the currently overworked emergency care, wards & departments.”

As a family we had no awareness of palliative care prior to Dads last week of life. We assumed that palliative care and end-of-life care were one and the same. Looking back now I believe that the ward staff were unsure of the differences either. Dad wasn’t actually palliative, I believe, but end-of-life and even then, this service was lacking in what it could provide.

There is a need to demystify palliative care and to reinforce the positive benefits.

Clear, simple and honest definitions of palliative care and CHF directly related to real life situations will help to educate everyone.

If we think of other situations/conditions that were once taboo subjects that are now integrated into everyday life and mirror them. Also, look at other cultures that have a more positive outlook on palliative and end-of-life care and see how that was achieved.


Final Reflections 

My son looked up the definition of palliative care and it said it was:  “Treating the symptoms but not the underlying disease”. He said,

“If you had the flu and took paracetamol that is technically a palliative treatment”

I thought that was quite a good way to look at it.

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