Terminally ill woman: We need to talk about death

Latoya Masinalupe never felt more alone than when she learned she was dying. And cultural taboos made it even harder, writes

When doctors told Latoya Masinalupe she was terminally ill, the 41-year-old Papatoetoe woman had never felt more alone.

Barriers enforced by her Samoan culture made it impossible at first for her to discuss the subject with her parents, and going to her local hospice felt like she was being shipped off to die.

Hospice New Zealand has been running a campaign in May to raise awareness of the value of the care it provides and to encourage more people to open up about the subject of dying.

Masinalupe became a paraplegic after a motor vehicle accident in 1998, and complications from this led to her suffering from a bone infection that became terminal in 2017.

‘‘One of those symptoms that has been persistent and getting increasingly worse is pain,’’ Masinalupe said.

‘‘I get so much pain it affects my mobility, how I’m able to get out of my chair and function from day to day, and it’s steadily gotten worse over the years.’’

A pain specialist referred Masinalupe to Totara Hospice in Manurewa in 2019.

‘‘At that point I didn’t know anything about hospice, so I had a mental freak-out ... and I’m looking at my pain specialist through Zoom, and I’m like, ‘give me some time’,’’ she said.

‘‘I just thought, OK, I’m going now, they’re going to ship me off there and that’s it, I’m going to die.’’

Masinalupe was determined not to go, but she reached a point where she was in so much pain it became impossible for her to function at home.

Doctors eventually convinced her that if she went into hospice for a few weeks, they could help her manage the pain.

‘‘I gave in after about a month, I really didn’t want to, I was so annoyed, I was pissed. I was convinced, one, that I’m going in there to die,’’ she said.

‘‘I probably lost my shit after the first or second night... I was in a really bad mental state. Looking back on it now, I honestly don’t know who that person was.’’

But two weeks in hospice care changed Masinalupe’s perspective, and she’s now back at home receiving outpatient care from hospice and a team of community nurses.

‘‘You might just read those first three words and think, end of life, that’s it,’’ she said.

‘‘There’s so much more in that, it’s your quality of life, it’s how you can live out what time you have left, how you want to live that out, with dignity, respect and no fear.’’

Masinalupe has also had to deal with the mental side of accepting death.

She is a proud Samoan, but cultural barriers made it difficult for her to broach the subject with her parents.

‘‘From a cultural perspective, there’s a belief that if you don’t talk about it, it’s not going to happen. It’s really sad,’’ she said.

‘‘It’s the uncertainty of the unknown. It was so hard to talk about. I couldn’t talk about it with my parents for ages.

‘‘I felt alone, I felt so alone. I had already been given this diagnosis, I couldn’t talk to my parents about it, which I wanted to, desperately.’’

But her parents eventually came around because of her personality.

‘‘I’ve always been their kid that’s, like, held them accountable, I’m not going to submit to what our culture says.

‘‘Don’t get me wrong: I am a proud Samoan, I love our culture. There are aspects to it that have really defined me as a person and that I’ve carried through my life, and that I hope I’ve passed on to my children.’’

Masinalupe said it took a while for her children to accept that she was dying.

‘‘With my family it was a struggle, my kids, especially my daughter, it took about a year for her to come around to being able for us to even be able to talk about it without her losing her mind, and it wasn’t cultural, it was just a human natural response to the fear of losing a loved one and her mum,’’ she said.

‘‘When she came around it was like I’m not alone any more, it was just such a deep sense of relief for myself and, in the end, for my daughter and my kids.’’

Masinalupe said it was important to remove the taboo and talk about something as natural as dying, so people who were struggling didn’t feel alone.

‘‘I feel like it’s something everyone should do, but I know there’s a lot of... It’s not just the Samoan culture that has taboo around that, culturally it’s such a huge topic, some are more open than others,’’ she said.

‘‘There are people within their own cultures who think outside the box like us and do it anyway.

My mum’s come around, it’s so much better to talk about it.

‘‘It even transcends cultural boundaries, it’s a human thing. So anyone, no matter what culture you come from... We’re all going to die eventually.’’

Hospice New Zealand launched a campaign, It’s OK, this month to raise awareness about the value of its care.

Chief executive Wayne Naylor said more than 3 million Kiwis tended to feel anxious and uncomfortable when thinking about a loved one dying.

‘‘Dying is not an easy subject to talk about. We don’t know what to say, and we’re afraid we’ll say the wrong thing,’’ he said.

‘‘Everyone’s story is unique, but feelings are universal and whatever you feel is OK. If we can open up, if we can talk about dying and be OK with all the feelings we have, we can make the most of life right until the end. Hospice helps people get through.’’

Masinalupe said in her final years she was focused on family and just living.

‘‘You’re definitely more appreciative of every day that you’re here, and the people who surround you and probably care less about what people think, especially if it’s negative,’’ she said.

‘‘You definitely do just want to live as normal as you can with the people you love around you.’’