As a young doctor I spent some time working in a palliative care hospital in the early 90’s. It was such a privilege to be working with people at end of life - with the opportunity to make a difference to quality of life and well-being of patients, and their family members. That experience made me decide to devote my career to Palliative Medicine.
I had some experiences at that time that stayed with me.
I had a patient, Marion, who had been a school principal. Marion had suffered a severe stroke. She had survived but was very incapacitated, confined to bed and unable to communicate. She was being kept alive, surviving on a feeding tube, and facing a life of care and dependence. Her specialist was very committed to her survival.
I discovered that Marion was particularly close to her sister Elizabeth. Marion had revealed to Elizabeth, and also her GP, her wishes in case she became seriously ill and was unable to speak for herself. Marion was fiercely independent. She had made it clear that she wouldn't want treatments or tubes to keep her alive if she became seriously ill and was unlikely to recover enough to be able to continue to live in her own home independently, walk, read and talk with friends. Hence, after the stroke Elizabeth asked that Marion’s feeding tube be removed to allow “nature to take its course”. If this path was taken, her final days would come. But this was what Marion had said she wanted.
This was very difficult for Marion’s specialist to accept, and also for Marion’s brother – neither of whom had had that conversation with Marion. Marion’s sister Elizabeth was very upset as she felt that Marion was receiving treatment that was against her wishes.
I realised that many people do not have the chance to discuss the care they would want if they were approaching the end of life because we don’t ask them – or if we do, it’s too late.
The key thing in Marion’s situation was that she had discussed this with her GP and he was able to clarify her wishes with the family. The GP’s involvement and credibility made it much easier for the specialist, and also her brother, to understand and accept that this was what she wanted.
I came to understand that the GP practice is for so many Australians the central managing point of their clinical care and that GP’s, and their practice nurses, are the ones who know the patient best, have their trust, and often also the trust of their family or loved ones.
This leads to a key question – what if we could start these conversations much earlier? Before we are in the middle of a crisis and in a routine way, that would be less daunting – both for the patient, the family, and the health care team. It became clear that we needed a routine screening process, that would start the conversation early, in a low key way, using a structured format and as a part of care and advice people were already receiving in their GP practice. That would take the pressure off all parties and well before there was a crisis or incident.
This was the genesis of the Advance Project - to help people like Marion, and their families and the health professionals providing care.
Advance is a free toolkit of screening and assessment tools and a training package, specifically designed to support nurses in Australian general practices to work with GPs to initiate advance care planning (ACP) and palliative care in everyday general practice.
The Advance Toolkit consists of six screening and assessment tools and a Guide, which indicates how to implement the screening tools in a systematic way in general practice. The toolkit was informed by a literature review of the best available evidence about tools to support palliative care and ACP in general practice, as well as input from our expert advisory group and feedback from general practice nurses, general practitioners and Carers Australia.
The program is available free of charge for nurses working in Australian general practice. Advance is funded by the Australian Government Department of Health, endorsed by the Australian Primary Health Care Nurses Association (APNA), and delivered by a national consortium. We provide free online training, face-to-face workshops, one-to-one tele-mentoring from an experienced palliative care nurse, sponsorship for completing patient assessments, and more. The training count towards nurses continuing professional development requirements.
The project has just launched – and we have been delighted with the response…“It’s wonderful - the Advance Project is filling a need in general practice – to create structured process to learn a patient’s needs and priorities – it also gives good practical help on how to communicate about this subject with patient in a practical way – giving options about the words to use and the approach to take.”
As it turned out, things eventually went according to her wishes for Marion. Because we had learned what she wanted, with support from all parties, Marion’s feeding tube was removed. She moved to a palliative care hospital, where in time, she died very peacefully and the family was very happy with the care she was provided.
For further information about Advance, contact firstname.lastname@example.org or check out the website at www.theadvanceproject.com.au.