Plan helps whānau face an uncertain future

Tahu Hikuroa’s aggressive brain tumours mean his future is uncertain. But, having an advance care plan has helped Tahu and wife Jo to make some tough decisions and feel more in control about what lies ahead.

Three years ago, the 37-year-old husband and father of two boys was working as a builder. One day he was talking to a contractor on site when he found it hard to speak. Over the next few weeks he had several migraines, but at the time didn’t think much of it.

In late February 2017, shortly after Tahu and Jo, 36, found out they were expecting their son Manaaki, Tahu visited his GP because he wanted to get the migraines under control. The GP was concerned enough to send him for a scan. Tahu was diagnosed with an aggressive brain tumour and given only weeks to live without treatment.

He 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 his 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.

Tahu’s treatment was 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, hopefully, being able to die at home is important to Tahu.

It is hard for Jo to face the reality that she may need more help to keep him at home as his health deteriorates, but reassuring to know that home support service, Nurse Maude, will be there when they need it.

They have talked through the reality of 24-hour caregiving with their two young sons, Knox and Manaaki.

‘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 wants when the time comes.’

Talking through these issues while things are relatively peaceful and stable has allowed Jo and Tahu to feel more in control of the process. The plan will also help the medical professionals who work with them in the future to be aware of their wishes.

‘If all of the logistics have been sorted, I can 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. ‘When Tahu is no longer able to talk, I don’t have to worry about what he would want because we have already talked through these decisions.

‘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.’

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.

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