{"id":634785,"date":"2026-10-19T00:36:09","date_gmt":"2026-10-19T00:36:09","guid":{"rendered":"https:\/\/www.newsbeep.com\/nz\/634785\/"},"modified":"2026-10-19T00:36:09","modified_gmt":"2026-10-19T00:36:09","slug":"seizing-the-day-how-terminally-ill-nzers-are-living-well-while-dying","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/nz\/634785\/","title":{"rendered":"Seizing the day: How terminally ill NZers are living well while dying"},"content":{"rendered":"

After a terminal cancer diagnosis, Karen Barnett is putting the fun into a FUNeral she plans to hold before her death. She\u2019s one of many refusing to go quietly. <\/p>\n

\n Karen Barnett watches her friend\u2019s reaction as she spots the playlist lined up for their girls\u2019 road trip. \u201cSongs
\n for my funeral\u201d could be full of tear-jerkers but that\u2019s not Barnett\u2019s style. The banging singalongs she\u2019s chosen for her big day reflect her approach to dying, which could be summed up as \u201ccelebrate living life rather than dwelling on its ending\u201d.\n <\/p>\n

Barnett, who lives in Auckland, was diagnosed with incurable breast cancer at 38 and told she might have only 15 months to live. Nearly six years later, she\u2019s passed her \u201cbest before date\u201d and is working her way through a still-growing bucket list, making every heartbeat count, and most importantly to her, encouraging others to do the same.<\/p>\n

\u201cMy approach is that life is 10% what happens to you and 90% how you respond,\u201d says Barnett, 44, who undergoes chemotherapy every three weeks and is often fatigued and extremely nauseous.<\/p>\n

Her list has included overseas travel that\u2019s reconnected her with family, swimming with dolphins, and bungy jumping, despite her fear of heights. She still works part-time as a counsellor for children and teenagers, volunteers at Riding for the Disabled, and last year, adopted a puppy. She also fundraises for charities, including Sweet Louise, which cares for Kiwis living with metastatic breast cancer.<\/p>\n

Her oncologist noted on her file, \u201cKaren would like honest and frank discussions about her prognosis because she wants to organise a massive party before her death.\u201d<\/p>\n

She\u2019s dubbed this her FUNeral, and it will be a colourful Hawaiian-themed celebration, with an MC and speeches. She encourages others to achieve what\u2019s on their bucket lists, take videos and share them.<\/p>\n

The date for this funeral depends on how her cancer progresses. When her oncologist tells her death is near, plans will be put in motion.<\/p>\n

\u201cMy goal long before I was diagnosed was to change the world one person at a time. If I can encourage others to make the most of living, it makes everything worthwhile.\u201d<\/p>\n

But friends and acquaintances don\u2019t always share her exuberant approach to death; some steer clear of the topic to avoid saying or doing the wrong thing.<\/p>\n

Silence can hurt more than an awkward conversation, says Barnett. \u201cMy advice would be to just say something. You don\u2019t have to have the right words. You can simply say, \u2018I don\u2019t know what to say, but I\u2019m here.\u2019\u201d<\/p>\n

She says sometimes the hardest part is feeling as if some people have already started grieving her, even though she is still with them. <\/p>\n

\u201cIt can make dealing with a terminal diagnosis even harder. It doesn\u2019t just happen with people I haven\u2019t seen for a while either. It happens with family and close friends too.\u201d<\/p>\n

\"KarenKaren Barnett\u2019s bucket list, clockwise from top left: Meeting a dolphin at Sea World on the Gold Coast; suited up to be attacked by a police dog in Hamilton; a meerkat encounter; a SkyRide bungy jump with TV host Bree Tomasel for Daffodil Day, and a Dubai desert visit. Photos \/ Supplied<\/p>\n

Navigating the end<\/p>\n

Richard Egan, an associate professor of health promotion at Otago University, is a patron of the End of Life Doula Alliance Aotearoa. While birth doulas \u2013 a non-medical supporter during labour \u2013 are at the start of life, death doulas are there at the end. They complement our current end-of-life-support system, he says.<\/p>\n

\u201cThey are like navigators. They are death literate and aware of all the systems \u2013 before, during and after death. This is a boon in a healthcare system that\u2019s often completely strained, especially because of the ageing tsunami. That means there\u2019s also going to be a tsunami of dying \u2013 and we want to do that as well as possible.<\/p>\n

\u201cPeople used to die in days and weeks \u2013 my granddad died mowing the lawns. But most of us will die of cancer or heart disease, and it takes a long time. That\u2019s a long time to be thinking about all the issues in the context of dying, and doulas can help through that process.\u201d<\/p>\n

Barnett goes as far as saying cancer\u2019s been a blessing, a wake-up call that invigorated her. Despite her overarching lightness though, concern for her family weighs heavily.<\/p>\n

\u201cI think the biggest fear for most people who are dying is not what\u2019s going on for them, but how everyone else will cope emotionally,\u201d says death doula Deborah McCullough, who Barnett engaged last year.<\/p>\n

McCullough\u2019s role includes helping people write a death plan, outlining how they want their ending to be. This could be as detailed as whether they\u2019d like flowers in their room, certain people kept away or even whether they want the doula present. Medical wishes are also part of the plan \u2013 for instance, whether feeding tubes or catheters are acceptable.<\/p>\n

\u201cWhen you have that plan, it empowers you to just live life,\u201d says McCullough, who likens her role to a midwife. She\u2019s also an educator, demystifying the dying process. \u201cOften, fears around what dying will look like stop people enjoying the time they have left.<\/p>\n

\u201cClassic signposts someone is close to dying include terminal restlessness, which as doulas we often understand as people wrestling with the fact they\u2019re letting go of their physical body and moving to another realm. Another is hearing the voices of people who have passed. If they\u2019re hearing them coming from outside in the hallway then they\u2019re further away from dying than if they were hearing them in the room with them. Knowing what these represent can be really enlightening.\u201d<\/p>\n

\"RichardRichard Egan and Deborah McCullough. Photos \/ Supplied<\/p>\n

McCullough, a former beauty therapist and business owner, became a doula two years ago. She was widowed suddenly when her husband, Steve, died of cancer at 47. Their daughters were 12 and 15. The family had hoped the treatment offered when the cancer was first diagnosed would enable a full recovery, but only four months later, they learned the cancer had metastasised. Three days after that, he was gone.<\/p>\n

\u201cI realised this was a way to help others die better than Steve did,\u201d says McCullough, who retrained as a death doula in the US. \u201cIt was really traumatic for us all sometimes, and scary and awful. If there\u2019d been someone there to tell us what to expect we\u2019d have realised that some of it was normal, and not as awful as we\u2019d thought.\u201d<\/p>\n

Like writing a will, death plans are best completed before a terminal diagnosis, she says.<\/p>\n

\u201cWe\u2019re all going to die. It\u2019s a 100% hit rate, yet we spend more time planning a holiday,\u201d says McCullough.<\/p>\n

Hiring a death doula costs anywhere between $45 to $200 an hour, partly dependent on clients\u2019 individual needs, though doulas can sometimes help identify sources of funding. Similar to a midwife, they\u2019re on call near the end of life. <\/p>\n

Richard Egan\u2019s research includes understanding what makes for a good death, focusing on spiritual care at the end of life. \u201cYou\u2019re likely to have a better experience if you have some framework for understanding life and death.\u201d Religion engenders a natural familiarity with death and dying, he says. \u201cMost of us don\u2019t have that familiarity any more though because 80% of the population aren\u2019t actively religious.\u201d<\/p>\n

\"TheThe fuck-it list: Before her death in 2023, Georgia Ferris ticked off skydiving in Motueka, a jetski ride in Honolulu and, right, a living wake. Photos \/ Supplied<\/p>\n

A living wake<\/p>\n

Georgia Ferris, who died in November 2023 at 27, left warm memories well beyond her family. In the care of Nelson Tasman Hospice, she had had Ehlers-Danlos syndrome, a genetic connective tissue disorder that led to gastrointestinal failure. Admitted to the specialist palliative care unit, Georgia organised a pyjama party for the entire facility.<\/p>\n

\u201cEven the CEO and charge nurse wore PJs that day,\u201d says Liv Ferris, Georgia\u2019s twin. Other patients came out of their rooms for the party, which included music, a catwalk show and prizes.<\/p>\n

\u201cThe hospice was phenomenal,\u201d says their mother, Robyn Maxwell. \u201cPeople don\u2019t know that hospice helps you live well while you\u2019re dying. It was like being enveloped in a korowai of love and care.<\/p>\n

\u201cShe was a beautiful young woman with a big heart. She showed everyone it\u2019s possible to live while dying, with graciousness and dignity.\u201d<\/p>\n

Following her terminal diagnosis, Georgia had been working through her bucket list, which she dubbed her \u201cfuck-it list\u201d. She also set up a charity, Treasure Troves, for children in hospitals nationwide and shaved her head to raise money for a friend with cancer and donated her hair for a wig.<\/p>\n

As she became too sick to tick off the remaining \u201cfuck-it list\u201d items herself, friends, family, and even a member of the hospice staff did it for her, videoing and sharing their experiences with her. Before she died, she threw another meticulously planned party \u2013 her living wake.<\/p>\n

During many wakeful nights, she would pass time drawing mandalas and gifting them to people. A doctor suggested she make a book, so she did, and gave the rights to the hospice. So far, it has raised $5000.<\/p>\n

Government funding covers only about 65% of hospices\u2019 clinical services, so initiatives like these are invaluable, says Hospice New Zealand CEO Wayne Naylor.<\/p>\n

This year, Health New Zealand announced an extra 10% in funding \u2012 $12 million \u2012 with much of it targeting underserved areas. \u201cThis goes some way to addressing inequities of palliative care access nationally, but is not a full solution to the postcode lottery.\u201d<\/p>\n

Before joining Hospice NZ, Naylor was director of nursing at Hospice Waikato, where funds raised by the Race4Life charity helped make wishes come true for terminal patients. \u201cOne person wanted a final dinner of crayfish,\u201d says Naylor. \u201cRace4Life didn\u2019t just organise that, a chef came along, too, and cooked it on site for the whole family. It helped make a very special memory.\u201d<\/p>\n

\"LivingLiving it up: Geneva Gill at a Breast Cancer Foundation event; with husband James on their wedding day in 2022; with her dog Bowie. Photos \/ Supplied<\/p>\n

Last wishes<\/p>\n

Race4Life Trust founder Viv James had previously been the patient programme leader at Mercy Hospice in Auckland, where she helped grant people\u2019s wishes and organise memorable events and activities.<\/p>\n

In 2015, she set up the trust to fulfil the wishes of palliative care patients nationally. Through it, her team granted more than 600 wishes. \u201cWe worked with incredibly generous communities throughout New Zealand who made these amazing things achievable.\u201d<\/p>\n

One case she remembers vividly is that of a 37-year-old father with terminal cancer who was sad he wouldn\u2019t be able to dance with his then-teenage daughter at her future wedding. Viv rallied a team and together they created a groom-less mock wedding at an Auckland venue, complete with a tuxedo for the dad, wedding dress for his daughter, catering and musicians.<\/p>\n

\u201cWe videoed everything, including the father-daughter dance, for her to use at her own wedding.\u201d<\/p>\n

She says such events \u201cenabled patients to look beyond the confines of life-limiting illnesses\u201d. \u201cThe biggest privilege was for us volunteers seeing the magic and importance of embracing the beauty of life.\u201d<\/p>\n

We were privileged to witness humanity at its best, and joy around death.<\/p>\n

Viv James<\/p>\n

Following Covid, instead of granting individual wishes, the trust focused on its annual Hampton Downs Track Day. At these, with more than 400 volunteers helping, there were rides in helicopters, on motorbikes and in classic cars, fire engines and supercars. But this year\u2019s event will be the last for the charity, which is winding up.<\/p>\n

One of those at the Hampton Downs event in 2023 was Geneva Gill, diagnosed with incurable cancer at 25. Her father Paul Simpson considers himself lucky to have been there with her.<\/p>\n

\u201cIt was incredible,\u201d says Simpson. \u201cGeneva was a bit of a rock star and these were life experiences she wouldn\u2019t have had otherwise, and memories we got to make together.\u201d<\/p>\n

Geneva\u2019s breast cancer had been in remission for only a few weeks before she found out the cancer had spread to her lymph nodes and lungs. It was the trigger to her seizing every opportunity she could, says her mum Lisa Wilson, who describes Geneva as beautiful, smart and kind. She had been dedicated to her studies, worked hard, and volunteered with Youthline and Coastguard.<\/p>\n

\u201cShe did this big change where she said \u2018yes\u2019 to everything. Some things you wouldn\u2019t think she\u2019d have been able to do, given what she was going through. She\u2019d go swimming at night with her friends, throw amazing parties, travelled, went jet boat sprint racing, bungy jumping, and skydiving from 10,000 feet.\u201d<\/p>\n

For her parents it was sometimes hard to see her take on so much. \u201cIt was a double-edged sword because we didn\u2019t want her to take off any extra life by exerting herself too much. She could be pretty feisty though, and if we voiced concern, she\u2019d say, \u2018What\u2019s the worst that could happen? It could kill me?\u2019<\/p>\n

\u201cIt wasn\u2019t that she had a bucket list, it was about having fun and creating memories. She always had a smile, and she did everything with grace and sheer determination, right to the end.\u201d<\/p>\n

Despite her terminal diagnosis, she also graduated with a degree in psychology and fulfilled another wish, getting married to her partner James Gill.<\/p>\n

\u201cTo have been able to call her my wife makes me feel like the luckiest man in the world,\u201d says James. \u201cShe was really determined to do good and help people.<\/p>\n

\u201cIt was quite remarkable how beautiful this girl was, and she had no hair, but there was just this beauty that shone out in her face. Our first date lasted three days because we didn\u2019t want to leave each other.\u201d <\/p>\n

The couple married in May 2022, a year after they\u2019d met, and just six months after Geneva\u2019s illness was found to be terminal. \u201cIt was amazing and felt really important for me to give her that,\u201d says James. Geneva died 20 months later, aged 29.<\/p>\n

\"WhenWhen Declan O\u2019Neill was diagnosed with stage 4 melanoma, one of the first things he and wife Jill did was include their son, daughter-in-law and 12-year-old granddaughter on a trip they planned to Europe. Photo \/ Supplied<\/p>\n

The early exit<\/p>\n

Declan O\u2019Neill was diagnosed with stage 4 melanoma 21 months ago, though you wouldn\u2019t know it to meet him, with his seemingly boundless energy.<\/p>\n

\u201cLike anybody who\u2019s had a close encounter with their own mortality, you look at what the future might hold,\u201d says the 75-year-old, who began immunotherapy following the discovery that the cancer had spread to his lungs. \u201cI looked at how this might end if treatments don\u2019t work and realised it was time to be proactive about really living, rather than just letting life happen.\u201d<\/p>\n

One of the first things he and wife Jill did was include their son, daughter-in-law and 12-year-old granddaughter on a trip they had planned to Europe.<\/p>\n

With a career in corporate video production, O\u2019Neill also decided to make a film, The Waiting Room, about the time between a terminal diagnosis and assisted death, focusing on end-of-life care in the remote Marlborough Sounds.<\/p>\n

Twenty years ago, he watched his sister die from multiple system atrophy, seeing for himself the toll degenerative diseases have on the patient and loved ones.<\/p>\n

\u201cHaving witnessed the sort of death some people have, I\u2019ve said I wouldn\u2019t want to put my family through that type of long, traumatic experience, so if I ever had something of that ilk, I\u2019d prefer to go down the other route of assisted death if I could.<\/p>\n

\u201cIt\u2019s very much a taboo subject but I think people really want to talk about what death is actually like, and what choices are realistically open.\u201d<\/p>\n

One thing Karen Barnett\u2019s never been afraid of is discussing what lies ahead. It\u2019s one of the reasons those around her are able to support her, she says.<\/p>\n

She\u2019s still adding to her FUNeral playlist, and her bucket list, with attendance at the 2027 Rugby World Cup a high priority.<\/p>\n

\u201cI want to keep encouraging people to believe in themselves and to live life. The more I can achieve that, the more it makes this worthwhile. My advice is don\u2019t wait for a terminal diagnosis, because none of us get out alive.\u201d<\/p>\n

Save<\/a>Share this article<\/p>\n

Reminder, this is a Premium article and requires a subscription to read.<\/p>\n

Copy LinkEmailFacebookTwitter\/XLinkedInReddit<\/p>\n","protected":false},"excerpt":{"rendered":"After a terminal cancer diagnosis, Karen Barnett is putting the fun into a FUNeral she plans to hold…\n","protected":false},"author":2,"featured_media":634786,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[8],"tags":[74,192,149286,9218,2534,5972,634,796,42834,156,26524,28162,221,29418,296,42551,4188,5829,111,139,69,109985,2171,29158,77617,40182,29954,6180,30331,49929,223,6436,6123],"class_list":["post-634785","post","type-post","status-publish","format-standard","has-post-thumbnail","category-entertainment","tag-after","tag-are","tag-barnett","tag-before","tag-cancer","tag-day","tag-death","tag-diagnosis","tag-dying","tag-entertainment","tag-funeral","tag-hold","tag-how","tag-ill","tag-into","tag-karen","tag-living","tag-many","tag-new-zealand","tag-newzealand","tag-nz","tag-nzers","tag-plans","tag-putting","tag-quietly","tag-refusing","tag-seizing","tag-shes","tag-terminal","tag-terminally","tag-the","tag-well","tag-while"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/posts\/634785","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/comments?post=634785"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/posts\/634785\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/media\/634786"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/media?parent=634785"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/categories?post=634785"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/tags?post=634785"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}