{"id":584470,"date":"2026-08-14T12:14:14","date_gmt":"2026-08-14T12:14:14","guid":{"rendered":"https:\/\/www.newsbeep.com\/il\/584470\/"},"modified":"2026-08-14T12:14:14","modified_gmt":"2026-08-14T12:14:14","slug":"palliative-care-biography-services-set-to-help-patients-find-purpose-dignity-at-end-of-life","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/il\/584470\/","title":{"rendered":"Palliative care biography services set to help patients find purpose, dignity at end of life"},"content":{"rendered":"<p><img loading=\"lazy\" decoding=\"async\" alt=\"Lauren Ironmonger\" data-testid=\"author-avatar-image\" height=\"64\" src=\"https:\/\/www.newsbeep.com\/il\/wp-content\/uploads\/2026\/02\/6db722e7f18977d112833b22d41ff88a566506d1.png\"  width=\"64\" class=\"sc-9a01536c-0 libeSR\"\/><\/p>\n<p data-testid=\"article-datetime\" class=\"sc-5cbbddda-5 hxoHkT\">August 14, 2026 \u2014 7:00pm<\/p>\n<p>Save<\/p>\n<p class=\"sc-d1b14060-4 JmUoF\">You have reached your maximum number of saved items.<\/p>\n<p>Remove items from your <a href=\"https:\/\/www.smh.com.au\/goodfood\/saved\" class=\"sc-3f16ee48-12 sc-d1b14060-2 jyLmZI iQLtAb\" rel=\"nofollow noopener\" target=\"_blank\">saved list<\/a> to add more.<\/p>\n<p>AAA<\/p>\n<p>Matthew Cumming grew up a keen sailor. But life \u2013 a career in advertising and then raising kids \u2013 got in the way. So, after receiving a diagnosis of <a class=\"inline-link\" href=\"https:\/\/www.smh.com.au\/healthcare\/mike-almost-missed-his-aggressive-cancer-an-overhaul-of-prostate-screening-rules-aims-to-stop-this-happening-again-20260807-p60m9m.html\" rel=\"nofollow noopener\" target=\"_blank\">stage-four prostate cancer<\/a>, which had already metastasised to his spine and pelvis, in 2020, being on the water was at the top of his bucket list.<\/p>\n<p>In the years since, Cumming has sailed around the Whitsundays, seen his daughter Maya perform at Coachella with Australian musician Flume (with wife Annette and youngest Indigo by his side) and travelled the country in a campervan.<\/p>\n<p>Cumming\u2019s bucket list has been modified since his cancer metastasised into a brain tumour last year and the surgery to remove it resulted in a stroke, though he continues to do the things he loves.<\/p>\n<p><img decoding=\"async\" alt=\"Matthew Cumming with volunteer biographer Kirsten Tilgals.\" loading=\"lazy\" src=\"https:\/\/www.newsbeep.com\/il\/wp-content\/uploads\/2026\/08\/625367cea032a66dac2c4783a8fb0b03df0edf76.jpeg\"  class=\"sc-d34e428-1 ldCIuB\"\/>Matthew Cumming with volunteer biographer Kirsten Tilgals.James Brickwood<\/p>\n<p>The singularity of his own life came into sharp focus when he participated in St Vincent\u2019s Hospital Sydney\u2019s Sacred Heart <a class=\"inline-link\" href=\"https:\/\/www.smh.com.au\/lifestyle\/life-and-relationships\/the-conversation-we-re-not-having-about-death-20251127-p5nj2c.html\" rel=\"nofollow noopener\" target=\"_blank\">palliative care biography program<\/a> \u2013 which he was initially reticent to join.<\/p>\n<p>\u201cI wondered, \u2018What have I really got to offer?\u2019\u201d says Cumming, who came to consider his hour-long sessions with biographer Kirsten Tilgals last year a beacon.<\/p>\n<p>\u201cThe process itself gave me purpose, and the biography was a surprise in terms of, \u2018Yeah, I have done some great and interesting things.\u2019 That makes you feel good about yourself.\u201d <\/p>\n<p>Related Article<a href=\"https:\/\/www.smh.com.au\/lifestyle\/life-and-relationships\/the-conversation-we-re-not-having-about-death-20251127-p5nj2c.html\" tabindex=\"-1\" class=\"sc-cba76dee-0 hdiTqm\" rel=\"nofollow noopener\" target=\"_blank\"><img decoding=\"async\" alt=\"Jill Nash\" loading=\"lazy\" src=\"https:\/\/www.newsbeep.com\/il\/wp-content\/uploads\/2026\/08\/2736f1906908da3d0d75da953cd1f3523c699578.jpeg\"  class=\"sc-d34e428-1 ioInpc\"\/><\/a><\/p>\n<p>Emma Rossi, the ward\u2019s biography services manager, who heads up the program\u2019s roughly 30 volunteers, says Cumming\u2019s reticence is common \u2013 particularly among older women who devoted their lives to raising a family.<\/p>\n<p>\u201cI might say to them, \u2018Yeah, but didn\u2019t you tell me you walked across Africa when you were 21?\u2019\u201d says Rossi.<\/p>\n<p>For a younger generation of women, she says, the stories might offer some perspective.<\/p>\n<p>\u201cThere\u2019s a message in that about, \u2018my grandmother was really a woman of great intelligence and integrity, and, gosh, I am not going to squander the opportunities that have been given to me\u2019.\u201d<\/p>\n<p>The hospital, whose program has been running for 12 years, has just partnered with the University of Notre Dame on a study hoping to back up the anecdotal benefits staff, patients, families and volunteers have experienced. It\u2019s slated for publication later this year.<\/p>\n<p>Biography or life story services in palliative care are nothing new, but research into their benefits is still emerging as the practice is becoming more common at home and abroad.<\/p>\n<p>St Vincent\u2019s model was the first of its kind in NSW and is adapted from one developed by Ivan Lichter in 1990 at Te Omanga Hospice in New Zealand. It was first exported to Australia 20 years ago by volunteers from Eastern Palliative Care in Melbourne.<\/p>\n<p>Penelope Di Sario, Eastern Palliative Care\u2019s co-ordinator of volunteers, says they use biography as a therapeutic tool to alleviate symptoms such as depression and anxiety during a time that can feel over-medicalised.<\/p>\n<p>\u201cTo have someone come for up to an hour a week, just to say, \u2018Tell me about who you are\u2019, at a time when people sometimes feel like they\u2019re just part of a medical cog, is really, really affirming,\u201d she says.<\/p>\n<p>Their 100 volunteers are trained to be guided by the patient. For some, biography may mean their full life story. For others, it may simply be a snapshot of a time in their life. Others use the service to write letters to family members, shape their eulogy or even create a cookbook or photo album.<\/p>\n<p>\u201cWhatever the person wants to talk about is what we\u2019ll engage with. The volunteer won\u2019t say, \u2018That\u2019s not how it happened, or the dates are wrong.\u2019 It doesn\u2019t matter,\u201d says Di Sario, adding they also record voice snippets to pass on to family members.<\/p>\n<p><a class=\"inline-link\" href=\"https:\/\/insightplus.mja.com.au\/2026\/8\/life-stories-for-life-limited-patient-care\" rel=\"noopener noreferrer nofollow\" target=\"_blank\">Research on the program by Dr Karly Edgar<\/a> demonstrated its therapeutic benefits as, among many other things, a means of transporting the dying to another world and making them feel seen.<\/p>\n<p>Having published close to 2000 biographies, Eastern Palliative Care is the largest service of its kind in the world. It now helps train other groups to do the same \u2013 from aged care to Indigenous communities and, recently, a hospice in Kenya.<\/p>\n<p>Related Article<a href=\"https:\/\/www.smh.com.au\/healthcare\/don-t-wait-til-2am-in-a-hospital-corridor-the-five-questions-every-adult-needs-to-ask-their-parents-20260512-p5zw3l.html\" tabindex=\"-1\" class=\"sc-cba76dee-0 hdiTqm\" rel=\"nofollow noopener\" target=\"_blank\"><img decoding=\"async\" alt=\"Kerry Milligan, 72, said death is the most inevitable thing about life but most people don\u2019t plan for it. \" loading=\"lazy\" src=\"https:\/\/www.newsbeep.com\/il\/wp-content\/uploads\/2026\/08\/c60122bfbad00330b2f736790a31ef10db2a0104.jpeg\"  class=\"sc-d34e428-1 ioInpc\"\/><\/a><\/p>\n<p>Davinia Seah, head of palliative medicine at St Vincent\u2019s, hopes the findings from the Notre Dame study will help bolster credibility and secure greater funding for the service.<\/p>\n<p>\u201cIt\u2019s the human aspects of people\u2019s stories that come out, bringing back connection, making one human, not just a patient,\u201d she says.<\/p>\n<p>Professor Megan Best, a research associate at Notre Dame\u2019s Institute for Ethics and Society, is leading the study.<\/p>\n<p>She says life story, facilitated by a trained and objective third party, offers the dignity and agency of shaping a legacy on one\u2019s own terms.<\/p>\n<p>Best\u2019s past research suggests the process helps counter demoralisation, a mental state that arises from serious stress like a terminal illness diagnosis (up to <a class=\"inline-link\" href=\"https:\/\/www.researchgate.net\/publication\/368905184_Spiritual_Care_in_Palliative_Care\" rel=\"noopener noreferrer nofollow\" target=\"_blank\">62 per cent of palliative care patients<\/a> report experiencing it).<\/p>\n<p>\u201cPeople can feel like giving up and have a desire to hasten death because the idea of a worthwhile future is inconceivable to them,\u201d she says.<\/p>\n<p><img decoding=\"async\" alt=\"Cumming says he looked forward to weekly biography sessions with Tilgals.\" loading=\"lazy\" src=\"https:\/\/www.newsbeep.com\/il\/wp-content\/uploads\/2026\/08\/2ce657c278d6081cf5eecd9e4379f7d5f563de8e.jpeg\"  class=\"sc-d34e428-1 bNAuyX\"\/>Cumming says he looked forward to weekly biography sessions with Tilgals.James Brickwood<\/p>\n<p>Indeed, while the biography can be a valuable document for patients and families, the process is often what matters more.<\/p>\n<p>\u201cIt\u2019s not just sitting down with granny and saying, \u2018Tell me what it was like when you were young,\u2019\u201d she says. \u201cIt requires a human presence to function fully. It\u2019s not something that AI is going to take over.\u201d<\/p>\n<p>Biography is part of <a class=\"inline-link\" href=\"https:\/\/www.smh.com.au\/national\/queensland\/an-icu-doctor-turned-her-hand-to-writing-poems-readers-can-t-stop-crying-20260216-p5o2l7.html\" rel=\"nofollow noopener\" target=\"_blank\">an emerging field known as narrative medicine<\/a> that marries the arts and the biomedical sciences, says Elizabeth Summerfield. A social historian at the University of Adelaide, Summerfield would like to see the service become mainstream.<\/p>\n<p>\u201cIndigenous societies have storytelling as a means of knowledge transmission. That\u2019s something we don\u2019t have \u2013 we\u2019re heavily dependent on science, especially in healthcare, as the language for explaining and moving through situations where we\u2019re of ill health or dying,\u201d she says, pointing to <a class=\"inline-link\" href=\"https:\/\/www.thelancet.com\/journals\/lancet\/article\/PIIS0140-6736(21)02314-X\/fulltext\" rel=\"noopener noreferrer nofollow\" target=\"_blank\">The Lancet Commission\u2019s report on The Value of Death<\/a>.<\/p>\n<p><img decoding=\"async\" alt=\"Matthew Cumming sailing at Scawfell Island in Queensland.\" loading=\"lazy\" src=\"https:\/\/www.newsbeep.com\/il\/wp-content\/uploads\/2026\/08\/b3ce814ceebd3ce77b5631e83cc940383cb38ead.jpeg\"  class=\"sc-d34e428-1 bNAuyX\"\/>Matthew Cumming sailing at Scawfell Island in Queensland.<\/p>\n<p>Cumming\u2019s biographer Tilgals, who retired from a career in media last year, says volunteering has had an enormous impact on her life.<\/p>\n<p>\u201cIt\u2019s made me appreciate the fact that deep listening is an exceptionally important thing to offer all people in your life \u2013 to actually be listening and not be thinking about other things including your own responses,\u201d she says, adding the process often reveals what\u2019s important in life.<\/p>\n<p>\u201cMost people seem to find a great deal of meaning and solace in those very basic of things of family, friends, pets, work, meaningful work and the things that spark joy, no matter what that is \u2013 like swimming, beading, cooking.\u201d<\/p>\n<p>The work has changed how she sees and connects with those in her own life, too.<\/p>\n<p>\u201cI\u2019ve started doing things like putting on my phone to record parts of conversations with older relatives when they start telling a story,\u201d she says, explaining that the minute details that make a life \u2013 names, places and feelings, for instance \u2013 can get lost when we rely on images to recall the past.<\/p>\n<p>\u201cSo we can all be these spontaneous biographers.\u201d<\/p>\n<p>Melanie Lindenberg, who has been volunteering with the program for almost five years, first became familiar with the benefits of biography as a manager in residential aged care.<\/p>\n<p>In the years since, she\u2019s become a keeper of the dying \u2013 young and old \u2013 and their stories.<\/p>\n<p>For many, telling Lindenberg about their life is the first time they have spoken about a traumatic past \u2013 whether that\u2019s the Holocaust, child sexual abuse, war or living through the HIV\/AIDS crisis.<\/p>\n<p>She says the main word to describe patients\u2019 experience with the process is \u201ccatharsis\u201d.<\/p>\n<p>\u201cTo be able to nurture them through the story, which is often quite traumatic, is very beautiful, and they love it,\u201d she says.<\/p>\n<p><img decoding=\"async\" alt=\"Melanie Lindenberg, a volunteer biographer with St Vincent\u2019s hospital palliative care program, describes the process as \u201ccathartic\u201d for those at the end of life.\" loading=\"lazy\" src=\"https:\/\/www.newsbeep.com\/il\/wp-content\/uploads\/2026\/08\/44cb07451878fce2830eafa4dae94c9f37312c11.jpeg\"  class=\"sc-d34e428-1 ldCIuB\"\/>Melanie Lindenberg, a volunteer biographer with St Vincent\u2019s hospital palliative care program, describes the process as \u201ccathartic\u201d for those at the end of life.Steven Siewert<\/p>\n<p>Lindenberg treasures the fact stories are written in the first person \u2013 a skill biographers are trained in, alongside responding to traumatic stories, editing and interviewing.<\/p>\n<p>\u201cI\u2019m basically a conduit for their story,\u201d she says.<\/p>\n<p>Related Article<a href=\"https:\/\/www.smh.com.au\/lifestyle\/life-and-relationships\/the-secret-to-a-happier-life-may-be-remembering-that-you-re-going-to-die-20260519-p5zyo4.html\" tabindex=\"-1\" class=\"sc-cba76dee-0 hdiTqm\" rel=\"nofollow noopener\" target=\"_blank\"><img decoding=\"async\" alt=\"Thinking about death may help us derive more pleasure and purpose from our time on earth.\" loading=\"lazy\" src=\"https:\/\/www.newsbeep.com\/il\/wp-content\/uploads\/2026\/08\/ea8e159e5addb87ae78b3d2567c3fafd9d5e3bdd.jpeg\"  class=\"sc-d34e428-1 ioInpc\"\/><\/a><\/p>\n<p>Rossi and the team convene with volunteers every six weeks to debrief and workshop challenges they may be having. All participants sign a consent form, while biographies are kept privately in the ward after patients die (volunteers erase all traces of the biography once they have finished their work).<\/p>\n<p>For now, Best\u2019s team is focused on integrating biography services into palliative care, but the hope is to expand it to other community groups that may benefit, including geriatric care and those who experience major health events, such as spinal cord injuries.<\/p>\n<p>For Cumming, his legacy is simple: his daughters Maya and Indigo.<\/p>\n<p>\u201cBoth constantly surprise me as to how much of me is in them,\u201d he says.<\/p>\n<p>\u201cSo I\u2019d like to be remembered for having produced two beautiful kids who are going to go on to do great things.\u201d<\/p>\n<p>Make the most of your health, relationships, fitness and nutrition with our Live Well newsletter. <a class=\"inline-link\" href=\"https:\/\/www.smh.com.au\/newsletter-signup?newsletter=live-well&amp;utm_source=EditorialArticle&amp;utm_medium=ArticleText&amp;utm_campaign=Newsletters\" rel=\"nofollow noopener\" target=\"_blank\">Get it in your inbox<\/a> every Monday.<\/p>\n<p>Save<\/p>\n<p class=\"sc-d1b14060-4 JmUoF\">You have reached your maximum number of saved items.<\/p>\n<p>Remove items from your <a href=\"https:\/\/www.smh.com.au\/goodfood\/saved\" class=\"sc-3f16ee48-12 sc-d1b14060-2 jyLmZI iQLtAb\" rel=\"nofollow noopener\" target=\"_blank\">saved list<\/a> to add more.<\/p>\n<p>From our partners<\/p>\n","protected":false},"excerpt":{"rendered":"August 14, 2026 \u2014 7:00pm Save You have reached your maximum number of saved items. Remove items from&hellip;\n","protected":false},"author":2,"featured_media":584471,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[34],"tags":[163,521,85,46],"class_list":["post-584470","post","type-post","status-publish","format-standard","has-post-thumbnail","category-healthcare","tag-health","tag-healthcare","tag-il","tag-israel"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/il\/wp-json\/wp\/v2\/posts\/584470","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/il\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/il\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/il\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/il\/wp-json\/wp\/v2\/comments?post=584470"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/il\/wp-json\/wp\/v2\/posts\/584470\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/il\/wp-json\/wp\/v2\/media\/584471"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/il\/wp-json\/wp\/v2\/media?parent=584470"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/il\/wp-json\/wp\/v2\/categories?post=584470"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/il\/wp-json\/wp\/v2\/tags?post=584470"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}