{"id":76319,"date":"2025-10-13T19:43:09","date_gmt":"2025-10-13T19:43:09","guid":{"rendered":"https:\/\/www.newsbeep.com\/nz\/76319\/"},"modified":"2025-10-13T19:43:09","modified_gmt":"2025-10-13T19:43:09","slug":"why-do-i-have-to-keep-proving-im-dying-dying-kiwis-rate-nzs-compassion","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/nz\/76319\/","title":{"rendered":"&#8216;Why do I have to keep proving I&#8217;m dying?&#8217; Dying Kiwis rate NZ&#8217;s compassion"},"content":{"rendered":"<p class=\"body-paragraph articleLinkText  [&amp;_p]:tit-sub-xl tit-sub-xl md:[&amp;_p]:d-tit-sub-xl md:d-tit-sub-xl mb-[1.3rem]\">A world-first project has revealed New Zealand&#8217;s government agencies are falling behind when it comes to showing compassion to dying people.<\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">Hospice NZ has released the first 500 results from its Dying Reviews initiative \u2013 a platform where terminally ill New Zealanders and their families rate how they&#8217;re treated by hospitals, banks, workplaces and public agencies.<\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">The results show an average score of just 3.28 stars out of five, with restaurants and events ranking highest at 4.55 stars, and government services and membership or subscriptions tied for lowest at 2.5 stars.<\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">Many respondents said the most distressing part was having to repeatedly prove a loved one&#8217;s death or terminal diagnosis.<\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">Hospice NZ chief executive Wayne Naylor said it wasn&#8217;t about what was done or said but how people were made to feel.<\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">&#8220;What this tells us is that while some individuals and organisations are leading with empathy, many systems are still designed for business-as-usual,&#8221; he said. <\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">&#8220;And dying is often anything but that. Bringing compassion back into our systems is the key message.&#8221;<\/p>\n<p>&#8216;We felt like anyone else&#8217;<\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">Among those behind the reviews is Deb McCulloch, who lost her husband Steve to cancer six years ago.<\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">During his illness, a small Whenuapai caf\u00e9 became their sanctuary.<\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">&#8220;He finally got his appetite back, and they were just so welcoming. We felt like anybody else,&#8221; she recalled. &#8220;He had two breakfasts that morning.&#8221;<\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">That experience inspired McCulloch to create Dying Matters \u2014 a website helping others plan for death and start conversations many still avoid.<\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">&#8220;From diagnosis to him passing was four months,&#8221; she said. <\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">&#8220;We didn&#8217;t have the conversations, we went into it unprepared, and it was scary.&#8221;<\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">McCulloch has since retrained as a death doula, supporting others through their final days.<\/p>\n<p><img decoding=\"async\" src=\"https:\/\/www.newsbeep.com\/nz\/wp-content\/uploads\/2025\/10\/karen-barnett-in-dubai-in-2023-BYCIGRSNBBBBXL4IFDOBOEXWQA.jpg\" alt=\"Karen Barnett in Dubai in 2023.\" width=\"800\" height=\"450\" loading=\"lazy\"\/><\/p>\n<p class=\"ImageMetadata__MetadataParagraph-sc-hi5x8q-0 cWTYyG image-metadata\">Karen Barnett in Dubai in 2023. (Source: Supplied)<\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">Karen Barnett was diagnosed with incurable breast cancer almost five years ago at age 38. She said her own experiences had been mixed. <\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">&#8220;I don&#8217;t waste heartbeats,&#8221; she said. &#8220;The fact that you&#8217;re above ground is a special occasion.&#8221;<\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">Barnett said while she&#8217;s encountered kindness, dealing with bureaucracy had been brutal.<\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">&#8220;I&#8217;ve got incurable breast cancer, why do I have to keep proving I&#8217;m dying every two years?&#8221;<\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">The reviews painted a stark picture. One five-star review read: &#8220;I was treated with kindness and empathy. They made a very difficult situation feel a little bit easier.&#8221;<\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">But another read: &#8220;They told my dying husband to come in and sign a form. It was the last time he left the house.&#8221;<\/p>\n<p>How the reviews work<\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">Modelled loosely on customer-feedback sites, Dying Reviews invited people living with terminal conditions and their carers to share how they were treated across everyday settings \u2014 from energy providers and insurance companies to employers, public services and gyms.<\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">The reviews were submitted by 380 individuals, either living with a terminal diagnosis or supporting someone who was dying.<\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">Hospice NZ has launched online training modules for banks, government departments and workplaces to help staff respond with more empathy. Several major banks and two government agencies have already begun rolling out the training.<\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">Naylor said the goal was simple: treat dying as part of life, not an administrative burden.<\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">&#8220;Once you bring empathy into it, how people feel about the whole process changes.&#8221;<\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">&#8220;This is about designing better \u2013 not just for the dying, but for all of us,&#8221; he said. <\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">&#8220;Because how we treat people in this stage of life says everything about who we are as a society.&#8221;<\/p>\n<p>What the first 500 Dying Reviews revealed<\/p>\n<p><img decoding=\"async\" src=\"https:\/\/www.newsbeep.com\/nz\/wp-content\/uploads\/2025\/10\/XDYE3WPDYBAAHA5KJ6B6HRHHGU.jpg\" alt=\"\" width=\"800\" height=\"450\" loading=\"lazy\"\/><\/p>\n<p class=\"ImageMetadata__MetadataParagraph-sc-hi5x8q-0 cWTYyG image-metadata\">(Source: Supplied)<\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">The platform has collected the country&#8217;s first 500 accounts from people living with terminal illness and their wh\u0101nau, rating how they were treated by workplaces, banks, government agencies and more.<\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">&#8220;The most consistent theme was repetition,&#8221; Naylor said. &#8220;People told us they had to keep retelling their story &#8211; every new form, every new person. That lack of empathy is exhausting when you&#8217;re already vulnerable.&#8221;<\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">Despite the low points, reviewers also described moments of humanity that changed everything: a pharmacy assistant who remembered a patient&#8217;s name, a bank manager who made a house call, or a caf\u00e9 that simply treated them like anyone else.<\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">Others shared stories of waived fees, home visits, and compassionate phone calls.<\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">Many described feeling unseen, unsupported or forced to fight bureaucracy at a time when they were at their most vulnerable.<\/p>\n<p class=\"body-paragraph articleLinkText  lg mb-4\">Last year, an estimated 38,000 people died in New Zealand \u2013 the vast majority following a period of illness, ageing or gradual decline.<\/p>\n<p>How New Zealand rates<\/p>\n<p>Restaurants &amp; events: 4.55 starsClubs and community groups: 4.10 starsShops and pharmacies: 4.08 starsEducation: 4 starsWorkplaces: 3.63 starsTravel and public transport: 3.58 starsLegal and accounting: 3.43 starsRest homes and retirement villages: 3.33 starsInsurance: 3.16 starsUtilities and payments: 3.12 starsBanking: 2.93 starsHealthcare: 2.77 starsGovernment agencies: 2.50 starsMemberships and subscriptions: 2.50 stars<\/p>\n","protected":false},"excerpt":{"rendered":"A world-first project has revealed New Zealand&#8217;s government agencies are falling behind when it comes to showing compassion&hellip;\n","protected":false},"author":2,"featured_media":76320,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[3],"tags":[5901,42,134,43,550,40,38,41,39],"class_list":{"0":"post-76319","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-headlines","8":"tag-1news-recommends","9":"tag-headlines","10":"tag-health","11":"tag-news","12":"tag-social-issues","13":"tag-top-news","14":"tag-top-stories","15":"tag-topnews","16":"tag-topstories"},"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/posts\/76319","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=76319"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/posts\/76319\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/media\/76320"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/media?parent=76319"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/categories?post=76319"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/tags?post=76319"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}