After nursing patients with chronic kidney disease for more than two decades, Suzanne Joynt has seen the comfort and support that advance care planning (ACP) about end-of-life care can provide for patients and their families. So when her stepfather was diagnosed with a terminal illness, she hoped other nurses would be aware of its benefits too.
I’ve been involved with advance care planning for a number of years now and have seen first-hand the comfort and support it can bring to a patient and their family. And I wished the benefits of ACP had been more widely known during my recent personal experience with my step-dad.
Last year, quite suddenly, my step-dad Barry was diagnosed with a terminal illness following a hospital admission. As a nurse with knowledge and skills on advance care planning, I spoke with Mum and Barry about ACP and gave them reading material to look at.
Advance care planning makes sure patients, their whānau and healthcare professionals are all aware of plans for end-of-life care, and as a living document it can be changed by the patient at any time. In my experience, having the conversation not only helps the patient, but also the family and whānau by avoiding those difficult situations and decisions about their loved one’s wishes when unsure of what they would have liked.
My mum, with the support of my family, tried to care for Barry at home but sadly, this was hard and he needed to be admitted when his symptoms became unmanageable.
On this hospital admission, I mentioned to the staff about advance care planning, but was told that this was ‘premature’. This seemed odd since we’d had a conversation about palliative care. I was left feeling uncertain that anyone knew of the benefits of advance care planning.
After his discharge, Barry lasted another five days at home with support from his brother, my sister and me. After a few falls and other deteriorations of his health, he was admitted for the very last time.
It was now obvious he was dying but still no conversations were initiated by staff about advance care planning and what Mum and Barry wanted. The care provided in those last few days was fantastic though and for that we were all appreciative. Barry passed away peacefully three days after his admission.
Unfortunately, Barry was not able to fully complete his advance care plan as his illness was quite aggressive and his death was a month after his diagnosis. I was, however, able to spend a great deal of time talking with him about what he wanted, including a very difficult conversation about his resuscitative status.
As nurses, we need to think about the holistic care that is needed for patients with terminal illness, not just the physical care. It’s about having those ‘important conversations’, which research has shown is what our patients want.
Yes, these conversations can be difficult, but there is training available and nurses should be encouraged and supported to do it. I have found that having conversations with patients is both rewarding and a privilege and, to me, is part of what nursing is about. ✚
On 16 April, New Zealand holds Conversations that Count Day, a national day to raise awareness about advance care planning. Visit www.advancecareplanning.org.nz for more information.
Author: Suzanne Joynt is a nurse unit manager in Auckland District Health Board’s renal and gastroenterology services and has cared for patients with chronic kidney disease for more than 20 years. After experiencing the positive benefits of supporting patients and their families to discuss and document end-of-life care and decisions, she introduced advance care planning into her own and her team’s daily working practice.