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New information book to help kidney failure patients make treatment choices

Author: Petrina Vousden
09 May 2017
  • L-R Pat O’Connor National Renal Office HSE, Deirdre Shanagher Irish Hospice Foundation, Susan McKenna Cavan General Hospital, Esther Behan, designer at the launch of new Conservative Care information book

A book to help seriously ill patients with kidney failure make difficult treatment choices around dialysis has been launched.

The book focuses on conservative care where a kidney failure patient opts not to have dialysis or chooses to end dialysis treatment.

Mike Kelly, Irish Kidney Association Counselling Services Co-Ordinator said:  “This book is an invaluable tool for those on dialysis who are contemplating terminating or not starting dialysis. It provides the practical steps people need to consider when making the decision. “

Susan McKenna, Renal Clinical Nurse Specialist, Cavan General Hospital produced the book with grant support from the Irish Hospice Foundation.

Ms McKenna said the book was created to address the need to ensure that patients are fully informed about conservative care of kidney failure.

Ms McKenna said: “Unfortunately dialysis treatment can be onerous and will not suit everybody when their kidneys fail. This booklet  will hopefully bring clarity to a most difficult topic and will allow for patients to be real partners in their care and become involved, with their medical team,  in shared decision making around their medical treatment choices and plans for future care. “

Choosing conservative care means kidney function failure will progress and there is a high probability this will lead to death.

Ms McKenna said it is essential that patients, their families and staff caring for them know the exact details of the treatment choices they are facing.

Kidney transplant recipient Margaret Fleming who spoke at the launch said the day she received a diagnosis of chronic renal failure and required a kidney transplant is scorched into her mind forever.

Margaret who is a retired nurse from County Monaghan said: “Dialysis for me was not an option, I was more concerned with having a quality life than extending my life artificially. Whilst it was devastating news, I chose not to be devastated,” she said.

Margaret said there was limited information on conservative care of kidney failure available at the time. But she researched the idea of making an Advance Care Directive and discussed the idea with her consultant and renal nurse specialist.

Margaret added: “In the meantime I was blessed to receive the precious gift of life from my sister, who generously and without hesitation donated one of her kidneys to me.

“This booklet provides information which is practical, honest and easy to understand, it enables us to begin a sometimes very difficult conversation with both ourselves, those we love and our healthcare team in order that we can make informed decisions about our treatment choices and our lives.”

Marie Lynch, Irish Hospice Foundation Head of Health Care Programmes said the booklet is timely as it coincides with the implementation of the Assisted Decision Making Capacity Act.

She said provides detailed information to help patients with advancing kidney disease make their  own decisions about terminating or not starting dialysis.

 “Although it is a very sensitive topic, we know that patient information on this topic is lacking and we are sure it will help patients with advancing kidney disease and their families as they face the decisions that lie ahead,” Ms Lynch said. 

Conservative Care of Kidney Failure, Helping You to Make an Informed choice, is the seventh in a series of publications published for kidney failure patients by the Irish Kidney Association.

It is available free from the Irish Kidney Association Health Office and Support Centre.  It can also be downloaded from www.ika.ie

Kidney failure patients, family members of patients who had chosen conservative care, palliative care consultants, renal consultants and the Irish Society of Nephrologists , Irish Kidney Association and the Irish Hospice Foundation were among those Ms McKenna consulted for the book.

The Irish Kidney Association approved the content of the book before its release.

Ms McKenna said:” It is thanks to the Irish Hospice Foundation both in terms of financial  and mentoring support, and of course to all of those who contributed their opinions during the process, that this booklet was completed.  I hope that it will become a valuable asset along with the other Irish Kidney Association booklets, in fully informing all those with kidney failure. “

The book was launched at the office of the Irish Hospice Foundation office on Nassau Street, Dublin following a: “Living with chronic illness: Helping people make informed choices” workshop.

 

 

 

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