Shifting the focus of care from disease to people – heartfelt article about dying in acute hospitals

This article is going a bit viral on social media. Does it mirror your experiences? It certain does mine, having worked for a long time in consultation services in acute hospitals. There have been a number of comments and letters to the Age supporting the message of the article, written by a senior doctor about the death of his father. http://www.theage.com.au/comment/hospitals-must-shift-focus-of-endoflife-care-from-disease-to-people-20150707-gi6joz

2 thoughts on “Shifting the focus of care from disease to people – heartfelt article about dying in acute hospitals

  1. Thanks Neil for a significant contribution. My family and I had a similar experience when my twin sister died in hospital in February 2013 after a long struggle with melanoma. This had been preceded by various episodes of treatment and suffering the most exhausting being occasioned by a hospital admission whereby she was given total limb perfusion to treat melanomatosis of her left leg which resulted in the limb becoming constantly painful and with ongoing problems in maintaining skin integrity. Subsequently she had been bed or chair bound for some many months. This proved frustrating and depressing for a woman who had been an enthusiastic teacher, an active sports person and involved in her community.

    Her final admission occurred as a result of overwhelming infection in the leg which required IV antibiotics. The infection failed to respond to this and after 2 days it was evident that she had a large area of dead tissue and to her family it was clear there was no treatment which would every manage to return her to a state of health which would enable her to come home and continue to enjoy a life amidst friends and family. She had also indicated clearly to all of us that he she did not want her life extended if she had no quality.

    In discussion with her family and friends she made it very clear that she wished to that her treatment should be limited to comfort care only. This decision lead to an approach to her consultant on day three who admitted that there was no prospect of active treatment and that she should have appropriate pain relief and sedation. A request was made on day 3 for a referral to the palliative care service who had yet to be involved.

    Over the next 2 days her prescribed medication proved inadequate, she continued to experience severe pain and was constantly distressed and the Palliative Care did not assess her. Finally on day 5 our frustration and anger lead to our taking a more determined stand. I was a qualified Palliative Care consultant who had been responsible in 1995 for establishing the service in this hospital, and I went over the heads of the ward staff and made contact with the team. This resulted in a more adequate pain regime but it was all a little too late. My sister died 4 days later still in much pain and distress despite our best endeavours.

    In retrospect I still question my inability to properly challenge the system and demand the better care which I know she deserved. As a family we did our best but it could have been better if only doctors could confront their inadequacies in properly addressing the real needs of their terminal patients. They must come to realise that their best endeavours in offering cure fail completely in the face of inevitable death.

    Like Sonia, I have spent years negotiating good end of life care within an acute hospital environment but, sadly, have to acknowledge that endeavouring to change the attitudes of senior members of the medical is proving a herculean task. That I failed my sister, even with my

    Knowledge and experience, speaks volumes for the enormity of the task.

    Ian Scott

    Like

  2. Pingback: Elsewhere in the Palliverse – Weekend Reads | PALLIVERSE

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