12 Apr 2016
It’s not too early to start thinking about your end-of-life care and treatment choices for the future.
Saturday 16 April marks the third national Conversations that Count Day, designed to encourage people to talk with their family, loved ones and health care team about what’s important to them.
Below is Marie Mitchell’s story about how advance care planning helped her father and family in his final days….
When Marie Mitchell’s elderly father Kevin Jackson came to the end of his life, family and health care staff knew exactly what he wanted in terms of treatment choices, beliefs, and what was important to him.
Kevin had been suffering from a range of health conditions when his GP recommended completing an Advance Care Plan (ACP). The online plan is written and lodged with health services to guide health staff, family and caregivers when patients are unable to speak for themselves.
April 16 marks the third national ‘Conversations that Count Day,’ designed to encourage people to talk about planning their future and end-of-life care with their family, loved ones and health care team.
This is a conversation that Marie, one of Kevin’s six children, is grateful her father had before he passed away in February. “My parents had previously been unaware of advance care planning, but decided it was a good idea to go through the process,” she says. “Dad had lost his mobility, was living on supplemental oxygen, and was also diagnosed with early onset dementia. He was still functioning but his quality of life wasn’t great.
“He completed an ACP last year, which is basically a question and answer sheet, with the help of my sister. His GP helped him answer some of the tougher questions, so it was good to have that balance.”
Kevin was admitted to Princess Margaret Hospital after he had a fall and broke his hip, where it was discovered he had contracted pneumonia. As his health declined, the staff used his ACP for guidance. Marie says the plan was a valuable tool for the family. “When dad started to go downhill, we were so grateful for his ACP. It was a real benefit to us, so we could just be there for him as a family and not worry about making decisions and whether or not we were doing the right thing for him.
“When a loved one is really sick, the last thing you need is that added stress, so the more information you have about what they want, the better. One of the things Dad wanted was a blessing, so the hospital arranged for a chaplain to come in. This was one thing that we would never have even known about or thought he would’ve wanted if it wasn’t for the ACP.”
Marie says it also helped eliminate any conflict within the family. “Dad had specified on the plan that he wanted antibiotics for treatment, but only when it was of benefit to him. Our siblings from the North Island arrived at the hospital after us and when Dad was a bit more alert, asked whether he could go back on medication. However, after talking to the doctor and reviewing his wishes, it was decided that this was not what he had wanted.”
Conversations that Count Day is coordinated by the National Advance Care Planning Co-operative, and supported by the South Island Alliance’s Health of Older People Service Level Alliance (HOPSLA). Val Fletcher, geriatrician and chair of HOPSLA, says advance care planning is something that all of us should start thinking about. “Conversations that Count day reminds us all how important it is to plan ahead, and for people to communicate their choices about what they would want for end-of-life care.”
Kevin’s consultant geriatrician, Dr Natasha Smith says his ACP was incredibly helpful. “Walking into a room of upset and anxious family members is a really hard place to start. So having an ACP meant I didn’t have to ask his family the difficult questions and they didn’t have to guess or make those choices for him. At times like this, it’s important that families spend as much time with each other as possible, so it helped that I didn't need to intrude too much – yet they knew we were managing his care according to his wishes.”
Dr Smith says an ACP is really important, especially for the older population and those with chronic illnesses, to know they will be heard and to take the pressure off family. “It’s not just about what you don’t want – what you do want is just as helpful. Kevin had a big family and from our perspective it made things more straightforward, because we were able to follow his instructions.
“It would be helpful if everyone had a plan, so when difficult times happened, families could be spending that time with the patient, instead of me.”