Two months ago, Tahu Hikuroa (37) died of an aggressive brain tumour leaving his wife Jo and two young sons, Knox and Manaaki to carry on without him.
As they navigated their way through numerous treatments over the last few years, they found that doing an advance care plan helped them face tough decisions.
An advance care plan (ACP) is the process of thinking about, talking about and planning for future health care and end-of-life care. It is about identifying what matters to you.
Talking through these issues while things were relatively peaceful and stable allowed Jo and Tahu to feel more in control of the process. The plan also helped the medical professionals who worked with them to be aware of their wishes.
‘With all of the logistics sorted, I could just be with Tahu as his wife and have the kids around us, knowing that we have done all the preparation together as a whānau,’ says Jo. In particular, he wrote in his plan that he just wanted the four of them together when he died and that is what happened.
‘When Tahu was no longer able to talk, I didn’t have to worry about what he would want because we had already talked through these decisions.’
Tahu was a builder. One day, while talking to a contractor on site, he found it hard to speak. He had been having ongoing migraines, but he didn’t connect the two at first.
In late February 2017, shortly after Tahu and Jo, found out they were expecting their second son, Tahu visited his GP because he wanted to get the migraines under control.
The GP sent Tahu for a CT scan. He was then diagnosed with an aggressive brain tumour and given only weeks to live without treatment. At the time, Tahu took advantage of all the treatment he could - surgery to remove the tumours, radiation and chemotherapy for six weeks and then six months of high-dose chemotherapy.
A few weeks after his diagnosis, a social worker and psychologist from the oncology team talked to Tahu and Jo about what to expect in the future and what support they could give them. ‘They mentioned an advance care plan but we weren’t ready to talk about dying then,’ says Jo. ‘But we knew it was there when we were ready.’
Tahu was unable to keep working because of the risk of him having a seizure on a building site. Fortunately, he had taken out income protection insurance a few months before his diagnosis, so was able to ‘retire’. He was also not allowed to drive and says adjusting to these changes was harder than expected - not only had he lost his career but also his independence. The family had just bought a house, so he was at least able to do renovations on their new home when he felt well enough.
The treatment Tahu received was initially successful and he had a clear scan in February 2018. The family made the decision to travel while he was well and spent six months visiting 19 countries.
However, on their return home, a routine MRI showed the tumours had returned. After 18 weeks of unsuccessful chemotherapy, Tahu had surgery to remove as many of the tumours as possible. Unfortunately, he picked up a severe infection, which resulted in two emergency surgeries and a stroke.
Recovery was slow but once he was back home and doing better, Tahu and Jo decided it was time to work on his advance care plan. He went to a session at the Cancer Society on end-of-life planning and picked up the advance care plan booklet. He and Jo worked through it together, and their GP also arranged for a local occupational therapist who was trained in advance care planning to come to their home to go through the booklet with them.
Tahu and Jo discussed what was important to them as they developed his advance care plan. Being together with the children in their home and being able to die at home was important to Tahu. It was hard for Jo to face the reality that she needed more help to keep Tahu at home as his health deteriorated, it was reassuring to know their home support service was there when needed.
Tahu and Jo talked through the reality of 24-hour caregiving with their two young sons.
‘It is much easier to think about advance care planning at a time when you are well rather than having to make decisions in a crisis,’ says Jo. ‘These conversations are hard but it’s so much better knowing what Tahu wanted when the time came.
‘I think everyone should have an advance care plan, whether they have a serious diagnosis or not. At the same time as sorting our wills and getting insurance we should all be putting together an advance care plan so our loved ones don’t have to question themselves if the worst-case scenario happens. As a society, we try to avoid talk of death but as adults it’s important that we are prepared - even if it means having tough conversations.’
At Tahu’s tangi, Jo shared some of the lessons they had learnt since his diagnosis, ‘Listen to your body- if you are brushed off, get a second or third opinion. Do the paperwork - have the tough conversations including doing your advance care plan so your loved ones know what you want and don’t want. Do the things you want - don’t hold back, don’t be afraid of what others might think. Feel everything - don’t bottle it up, be happy sad, laugh and cry. Be kind to your mental health and, lastly, say ‘I love you’ - make sure the ones you love know you love them and that they are valued.’
Tahu died at home with his wife and sons by his side.
E Tahu, haere atu rā, e moe, okioki mai rā.
Arohanui ki te whānau.
The Health Quality & Safety Commission is leading a five-year strategy to promote advance care planning throughout New Zealand in partnership with district health boards.
Any time is a good time to start your advance care plan.
Visit our website to view more stories: www.myacp.org.nz