‘I’M SORRY I FAILED YOU, MUM’

Mackay teacher’s fi­nal days ex­pose gap in pal­lia­tive care

Daily Mercury - - FRONT PAGE - ME­LANIE WHIT­ING

AS she de­scribed the help­less­ness she felt when she ar­rived to find her mum on death’s door in a Mackay nurs­ing home, Fiona Ja­cobs said her mother’s pal­lia­tive care was woe­ful.

In a sub­mis­sion to the Queens­land Gov­ern­ment’s in­quiry into aged care, end-of-life and pal­lia­tive care and vol­un­tary as­sisted dy­ing, she said she be­lieved her mother, if she could have, would have cho­sen to end her life “be­fore she suc­cumbed to full blown de­men­tia and such a ter­ri­ble drawn out death”. “I am still pro­foundly af­fected by the way mum died, the ef­fect on my health and re­la­tion­ship with my sib­lings has been ir­re­vo­ca­bly harmed,” she said.

THE daugh­ter of a for­mer Mackay teacher has de­scribed the “woe­ful” pal­lia­tive care her mother re­ceived dur­ing her last 12 days of “suf­fer­ing”, be­fore her death in 2017.

The Queens­land Par­lia­men­tary Health, Com­mu­ni­ties, Dis­abil­ity Ser­vices and Do­mes­tic and Fam­ily Vi­o­lence Pre­ven­tion Com­mit­tee is con­duct­ing an in­quiry into aged care, end-of-life and pal­lia­tive care and vol­un­tary as­sisted dy­ing.

In her writ­ten sub­mis­sion to the in­quiry, Fiona Ja­cobs de­scribed the pain of watch­ing her “in­tel­li­gent and gen­tle” mother’s health de­te­ri­o­rate fol­low­ing her fa­ther’s death.

“Her rheumatoid arthri­tis be­came worse and her os­teoarthri­tis be­came so bad her an­kles joints fused, leav­ing her with lit­tle move­ment left at all,” Ms Ja­cobs said.

“Her knees grated bone on bone and her hips and back were out of align­ment due to her chronic ataxic gait.”

De­spite her ex­cru­ci­at­ing phys­i­cal pain, Ms Ja­cobs said her mother only ever took Panadol for her symp­toms.

“She still, how­ever, had a sharp mind and al­ways par­tic­i­pated in in­ter­est­ing con­ver­sa­tion un­til she started show­ing signs of de­men­tia. This was mum’s worst night­mare,” she said.

Ms Ja­cobs’ mother was even­tu­ally sent to a Mackay nurs­ing home to re­ceive high care pal­li­a­tion.

The day after her mother ar­rived at the nurs­ing home — her sec­ond stint at the fa­cil­ity — Ms Ja­cobs re­called the shock of re­ceiv­ing a teary phone call from her brother ask­ing her to fly up to Mackay “be­cause mum was dy­ing”.

Ms Ja­cobs ar­rived at the nurs­ing home the fol­low­ing day to find her mother “ly­ing in a nappy with her shirt up around her head” and in dis­tress.

“I asked the stu­dent nurse if she could go and find a nurse im­me­di­ately. I stayed with mum to try and calm her down,” she said.

“Noth­ing worked — she had no idea who I was or where she was, she was non­ver­bal, clearly dis­tressed and ob­vi­ously suf­fer­ing in pain.

“Be­ing a reg­is­tered nurse my­self, I was used to car­ing for dy­ing peo­ple, but mum’s dis­tress shocked me deeply.”

Ms Ja­cobs said for the next three days, she fought her mother’s doc­tor, nurs­ing staff and her sib­lings to main­tain ad­e­quate relief for her.

She claimed at one point, she was told the nurs­ing home had “run out of mor­phine” and was wait­ing for a phar­macy de­liv­ery.

She also claimed her mother con­tin­ued to drift in and out of con­scious­ness and went with­out fluid for five days prior to her death.

Since the ex­pe­ri­ence, Ms Ja­cobs has be­come a pas­sion­ate ad­vo­cate for vol­un­tary as­sisted dy­ing.

To this day, she is still pro­foundly af­fected by the way her mother died, and her re­la­tion­ship with her sib­lings has been ir­re­vo­ca­bly dam­aged.

“I be­lieve that ev­ery per­son has the right of choice and self­de­ter­mi­na­tion and that vol­un­tary as­sisted dy­ing is an ad­junct to good pal­lia­tive care and end of life care,” Ms Ja­cobs said.

“Cur­rently, the qual­ity of a per­son’s end of life care and ex­pe­ri­ence is of­ten de­pen­dent on the knowl­edge and skills of those pro­fes­sion­als who are car­ing for them.

“There is a fun­da­men­tal need for fur­ther ed­u­ca­tion around the ar­eas of not only pal­lia­tive care, but also Ad­vance Health Care Di­rec­tives and end of life care as op­posed to rou­tine aged care.”

Pal­lia­tive Care Queens­land chief ex­ec­u­tive Shyla Mills said Queens­land’s in­quiry into aged care, end-of-life and pal­lia­tive care and vol­un­tary as­sisted dy­ing had ex­posed eye­open­ing sto­ries and gaps in pal­lia­tive care.

Ms Mills said de­spite the great work of skilled staff work­ing in pal­lia­tive care in Mackay, the re­gion’s sparse pop­u­la­tion and a lack of re­sources meant it was some­times dif­fi­cult for pa­tients to ac­cess spe­cial­ist care.

“We def­i­nitely think there needs to be im­prove­ment in that space. A lot of peo­ple in Mackay travel to Townsville or Bris­bane for spe­cial­ist care,” she said.

“Across Queens­land, we have only 50 per cent of the rec­om­mended spe­cial­ist pal­lia­tive care doc­tors needed.”

Ms Mills said PCQ had a neu­tral position on the is­sue of vol­un­tary as­sisted dy­ing.

But she said the cur­rent gaps in pal­lia­tive care and aged care across the state should not be the rea­son for in­tro­duc­ing new leg­is­la­tion.

“We re­ally need to look at the is­sues in the sys­tem. It’s likely only two per cent of the pop­u­la­tion will be el­i­gi­ble for vol­un­tary as­sisted dy­ing,” Ms Mills said.

“If peo­ple are look­ing at choice, re­ally there’s not a choice for good pal­lia­tive care across Queens­land — that is needed whether vol­un­tary as­sisted dy­ing comes in or not.”

Mackay Base Hospi­tal has a ded­i­cated pal­lia­tive care nurse.

In 2017, it re­cruited a pal­lia­tive care nurse nav­i­ga­tor to help guide peo­ple with a ter­mi­nal ill­ness through the health­care sys­tem.

Mackay Hospi­tal and Health Ser­vice act­ing chief ex­ec­u­tive Marc Warner said there was no max­i­mum ca­pac­ity limit set for its pal­lia­tive care ser­vice.

“At any one time there are up to 50 pa­tients ac­cess­ing pal­lia­tive care and each year about half of these pa­tients are sup­ported to die at home,” Mr Warner said.

“We recog­nise sup­port­ing peo­ple at the end of their life is a sen­si­tive time in life and we are al­ways striv­ing to see how we can en­hance our work in this area.”

Mackay Mater Hospi­tal ex­ec­u­tive of­fi­cer Beth Thomas said the hospi­tal had a ninebed pal­lia­tive care unit, which re­cently re­opened after un­der­go­ing a re­fur­bish­ment.

The num­ber of beds in the unit can be in­creased dur­ing times of higher de­mand.

Ms Thomas said sta­tis­tics from Pal­lia­tive Care Aus­tralia found 70 per cent of pa­tients pre­ferred to die at home.

“In­vest­ment in ser­vices and hav­ing funds avail­able to pro­vide re­ally good pal­lia­tive care ev­ery­where is the first step.”

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