\n<\/p>\n
My father spent the last 12 days of his life unconscious, unresponsive, in a hospital bed on Queensland\u2019s Sunshine Coast.<\/p>\n
My mother sat beside him night and day, holding his hand. I massaged Dad\u2019s legs, horribly swollen, the effects of oedema \u2013 a buildup of fluids. His mouth fell open, dried out; I swabbed it constantly in an attempt to keep it wet. Sometimes his breath was a gurgle. My brother and I took turns sleeping on a stretcher in his room \u2013 the \u201cdying room\u201d was what hospital staff called it.<\/p>\n
I whispered to him, \u201cYou can go now, we love you.\u201d But for 12 days Dad remained tenaciously alive. Had he known of his grievous state, he would not have been happy.<\/p>\n
We were distraught. What did<\/em> he know? Was he frightened? Was he in pain but unable to tell us?<\/p>\n Dying is difficult, a nurse told me \u2013 it can be an unmercifully long passage.<\/p>\n It might have been even longer and more appalling had Dad not been clear about his wishes.<\/p>\n S<\/span>oon after he was diagnosed with prostate cancer in 2005, my father signed a legally binding advance health directive, Queensland\u2019s version of what is known in some other states as an advance care directive. AHDs and ACDs record what a person wants in the event they do not have the capacity to make or communicate decisions about their own healthcare or treatment \u2013 say in situations such as my father\u2019s decline into unconsciousness, or as a result of a catastrophic accident.<\/p>\n Dad\u2019s directive said he did not want to receive \u201clife-sustaining\u201d treatments including cardiopulmonary resuscitation, assisted ventilation or artificial nutrition. He wanted to die as swiftly as possible without medical intervention beyond palliative care to keep him comfortable.<\/p>\n <\/span>Stephanie Wood with her father<\/span><\/p>\n We might have felt there was little to be thankful for through those wretched days in the dying room but things could have been much worse.<\/p>\n One day at the nurse\u2019s station outside my father\u2019s room I saw three people arguing with one another and a doctor. It was heated, circular, unpleasant. Decisions about their loved one\u2019s care were up for debate.<\/p>\n At least we knew what Dad wanted. But too few Australians have such certainty: only 33% of Australians have undertaken some form of advance planning and only 6% of them have formally completed an ACD, according to a 2025 study conducted by Advance Care Planning Australia.<\/p>\n When there is no legally binding directive in place, the consequences can be grim: people might receive interventionist treatments they would never have wanted had they been able to express their wishes. Families, meanwhile, can find themselves in dispute about treatment decisions at a time already characterised by enormous stress and anguish.<\/p>\n double quotation markI was in hospital for four months! I\u2019ve had a million needles and a million tests. It\u2019s a lot. And it\u2019s not just a lot for me, it\u2019s a lot for DawnJohn Groves, retiree<\/p>\n Associate Prof Davinia Seah, the head of palliative medicine at St Vincent\u2019s hospital in Sydney, frequently sees conflict between family members. \u201cWe\u2019ve had situations where one daughter will say, \u2018Mum really wanted to be comfortable, let\u2019s just dose her up on morphine\u2019 and the other family member will say, \u2018No, I want everything done, they need to be in ICU, they need to be intubated,\u2019\u201d Seah says. \u201cIt\u2019s very hard to know which family member you should be listening to because there\u2019s no documentation.\u201d<\/p>\n Seah says people\u2019s manner of death often reflects the way they lived: \u201cIf your family has been arguing for many years, unfortunately that\u2019s probably going to manifest itself in someone\u2019s death as well.\u201d (Queensland\u2019s AHD form has space to jot notes under the statement \u201cI would prefer these people not be involved in discussions about my health care.\u201d)<\/p>\n Clinicians, Seah says, are thankful for more harmonious situations in which a family member can speak for their loved one in the absence of written instructions. \u201cIt\u2019s really important that they are able to say, for example, \u2018Mum said that she never wanted to be hooked up to machines.\u2019\u201d<\/p>\n When there is neither documentation nor a legally appointed \u201cenduring guardian\u201d, doctors like Seah are in the dark. \u201cI\u2019ve got a patient at the moment who has had some mild cognitive impairment and a range of neighbours have been really supportive but no one has actually been appointed to make decisions, so we\u2019ve got to figure out, \u2018Are these neighbours trustworthy, are they really thinking of this patient\u2019s best interests?\u2019 That\u2019s a tricky situation to be in.\u201d<\/p>\n If a written document has been completed, she says, it\u2019s vital that it can be produced at the hospital. \u201cToday I had a conversation with an 87-year-old lady who came into hospital with heart problems. She scored a tick \u2013 she has an advanced care directive \u2013 but when I asked where it was she said it was with her solicitors. Do you know how hard it is to get that paperwork?!\u201d<\/p>\n One doctor who asked not to be named says she has helped her own parents finalise their directives, even though it was a struggle to persuade her mother to think about the future. \u201cMum is fiercely independent and would rather die than have someone help her shower, for example, but she is still resistant to talking about what might eventually happen,\u201d the doctor says. \u201cI have too often watched older people die in hospitals or be maimed by well-meaning CPR\/life-sustaining measures when their wishes are not set out formally.\u201d<\/p>\n John Groves, a New South Wales retiree, completed an ACD after coming close to death multiple times over the past year. \u201cIt\u2019s all written down now \u2026 what we want done,\u201d he says in a Zoom call from his Port Macquarie lounge room, turning to look at his wife, Dawn, beside him. \u201cEverything\u2019s pretty black and white with us now.\u201d<\/p>\n About 15 years ago, Groves developed cardiomyopathy. By late 2025 his body was failing him. \u201cIt all got pretty bad, pretty quick,\u201d he says.<\/p>\n In September, he collapsed at his cardiologist\u2019s office. He was resuscitated and intubated at Port Macquarie base hospital before being airlifted to Sydney. \u201cIt was pretty scary,\u201d says Dawn, a social worker and case manager at Kempsey correctional centre.<\/p>\n At St Vincent\u2019s hospital, Groves had a mechanical heart pump surgically implanted but soon afterwards developed a liver infection. He becomes emotional as he talks about the effect of his health crises on his family. \u201cThe poor buggers, they\u2019ve been told four or five times now that \u2026 I\u2019m probably not going to wake up, it\u2019s pretty tough on them.\u201d<\/p>\n A St Vincent\u2019s palliative care specialist suggested that Groves should complete an ACD. \u201cShe would come in and have the discussion with us and then after a couple of visits, she\u2019d leave some paperwork for us to have a look at.\u201d<\/p>\n <\/span>Part of John Groves\u2019 advance care directive<\/span><\/p>\n The decisions John has documented in his ACD reflect his concern for his family. \u201cI was in hospital for four months! I\u2019ve had a million needles and a million tests. It\u2019s a lot. And it\u2019s not just a lot for me, it\u2019s a lot for Dawn.\u201d He points to the external battery pack and controller connected to his heart pump: \u201cIf this thing fails, just let me go.\u201d<\/p>\n Among the declarations in his ACD, Groves has noted that he wants to be cared for, if possible, at home when he is dying and to be kept pain-free. He would accept resuscitation\/CPR but not renal dialysis or \u201clife prolonging treatments that require continuous administration of drug(s)?\u201d. He has recorded that, \u201cIf I pass outside of Port Macquarie I would like to be cremated and for my wife to take my ashes home.\u201d He has ticked the yes box in answer to a question about whether he would like to donate his organs and tissues for transplantation after his death.<\/p>\n \u201cI said they could have whatever bits and pieces they wanted but I said to the doctor, \u2018I don\u2019t know what you\u2019re going to want because nothing\u2019s any good any more!\u2019\u201d<\/p>\n In addition to recording preferences about treatment, the person you want to make decisions on your behalf and whether you want to donate your organs (which requires additional planning), ACDs typically allow space to outline values that might be relevant at end of life. For example, NSW guidelines suggest people consider stipulating whether they want flowers in their room, to spend time in their garden or for favourite music to be played.<\/p>\n Seah says she has had patients write things in their directives such as \u201cIf I can\u2019t eat chocolate, I can\u2019t wipe my bottom, I can\u2019t play golf, life\u2019s not worth living \u2026 there\u2019s no point in trying to prolong it.\u201d<\/p>\n I think about what made my father\u2019s life worth living even as he became sicker: being able to enjoy his food, walking to the local shop to buy a newspaper, reading books to his grandchildren. In his last weeks, none of that was possible \u2013 and pain became a permanent resident.<\/p>\n And I remember a conversation with a friend who has in place every last possible end-of-life document, from her will to an ACD: \u201cWhen you don\u2019t have children, when you don\u2019t have a spouse, you really need to get it sorted out.\u201d<\/p>\n On NSW Health\u2019s website I find an advance care directive form. I hit print.<\/p>\n","protected":false},"excerpt":{"rendered":" My father spent the last 12 days of his life unconscious, unresponsive, in a hospital bed on Queensland\u2019s Sunshine Coast. My mother sat beside him night and day, holding his hand. I massaged Dad\u2019s legs, horribly swollen, the effects of oedema \u2013 a buildup of fluids. His mouth fell open, dried out; I swabbed it<\/p>\n","protected":false},"author":1,"featured_media":51218,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[51],"tags":[546,376,141,2217,2760,3330,4358,3305,2455],"class_list":{"0":"post-51217","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-health","8":"tag-days","9":"tag-death","10":"tag-dying","11":"tag-father","12":"tag-nursing","13":"tag-planning","14":"tag-room","15":"tag-taught","16":"tag-twelve"},"_links":{"self":[{"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/posts\/51217","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=51217"}],"version-history":[{"count":0,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/posts\/51217\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/media\/51218"}],"wp:attachment":[{"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=51217"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=51217"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=51217"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}\u2018It\u2019s very hard to know which family member you should be listening to\u2019<\/h2>\n
\u2018If this thing fails, just let me go\u2019<\/h2>\n
What makes life worth living?<\/h2>\n