Anna Edgell’s passing reinvigorates calls for palliative care hospice

Anna Edgell, the courageous Woy Woy midwife with terminal breast cancer, who passed away on December 1, had one message for the residents of the Central Coast, who currently have no hospice or palliative care facilities outside of a nursing home, “Palliative care is worth fighting for, and it’s worth dying for.”
Edgell, 38, whose breast cancer metastasized to her liver, lungs and pelvis was determined to make a last-ditch bid to help residents from across the Central Coast to “die with dignity” and was gearing up for a media campaign to lobby the State and Federal Government to build a palliative care hospice on the Coast.
Prior to her passing Edgell delivered the following media statement to Coast Community News.
“As a midwife for more than a decade, I’ve been trained for 13 years to promote choice and advocate for women in birth where they are treated; that they are treated with dignity and respect and that they are happy and comfortable surrounded by their loved ones.
“So why is it that whilst you can choose where to give birth on the Coast, you can’t choose where you are going to die?” Edgell said.
“Currently my choices are to die in a nursing home, or a standard hospital ward as there are no palliative care beds in any public hospitals on the Coast.
“My dream, is for a palliative care centre like home, a bit like a birth centre really with your own bathroom, a room big enough for visitors, no restrictions on visiting hours, use of a communal kitchen for relatives to prepare meals, low level lighting and maybe flowers and a little music therapy,” she said.
The Member for Gosford, Liesl Tesch, who had been an active supporter of Edgell’s campaign, delivered a speech in Parliament in November about the region’s need for a palliative care hospice.
“The Central Coast has the largest population of centenarians in NSW, and 5.9 per cent of our population is over 80-years-old, close to 20,000 people,” Tesch said.
Tesch told Parliament she had received a multitude of letters and email and a petition with 7,000 signatures from community members who support the erection of a local palliative care hospice.
“The East Gosford Wyoming Lions Club has also been working tirelessly to fundraise for a dedicated hospice called Elsie’s Retreat, named after another nurse who died inappropriately in a nursing home.
“The community’s effort has been amazing but it needs government for a dedicated, stand-alone facility.
“Many people on the Central Coast spend their time commuting to and from work.
“There is absolutely no reason someone who is terminally ill should have to commute in their final days.
“I fully support beautiful Anna, who knew at the end of the treatment she had no options left to cure her cancer.
“We may not have the power to choose when we die, but in situations like Anna’s, we should have the power to choose how we die,” Tesch said.
For Anna, who at Christmas was focusing on what to buy her little girl, either something fun and frivolous in the Minecraft vein or something poignant because it the last Christmas gift Ellie will ever receive from her, she took on the dilemma head on with typical nurse’s stoicism.
“I can’t focus on the lasts too long, I want to focus on the firsts,” Edgell said.
“If I can continue another nurse’s legacy and help achieve the dream of the Coast’s first palliative facility, then that is the best gift I can give my daughter, showing her that the world is full of strong women.
“May we know them, may we raise them, may we be them,” Edgell said.
Labor’s candidate for Robertson, Anne Charlton, is also supporting the campaign and urged Central Coast residents to sign the Elsie’s Retreat Petition.
“The cost of keeping a patient in an acute hospital bed was $1800 per day compared to $1000 per day for a palliative care hospice staffed by palliative care specialists,” Charlton said.
“We propose to establish a specialty sub-acute stand-alone Palliative Care Unit on the Central Coast.
“A stand-alone unit is a cost-effective solution to house a dedicated Palliative Care multidisciplinary team to meet patients’ end-of-life preferences and needs,” she said.
“The Elsie’s Retreat campaign is similar to that mounted by the local community to establish the now highly successful Central Coast Cancer Centre at Gosford.
“Currently care is frequently provided by strangers and in urgent circumstances with a lack of holistic approaches.
“Our patients and our families and our community expect and deserve more, Anna deserved more,” Charlton said.
“Anna touched our lives with her passion, love and dedication.
“As part of Elsie’s Retreat Committee I will continue to campaign for the type of palliative care services that Anna called for.
“Visit the Elsie’s Retreat Project website to sign the petition,” Charlton said.
Darren Edgell, Anna’s husband, said he had lost the most amazing woman he had ever met.
“Words fail me, but Anna will leave such an empty space to me.
“Our children Brad and Ellie will miss her so dearly, as will so many others,” he said.
Edgell’s funeral was held on December 7 at the Greenway Chapel.
Hundreds gathered in the chapel to pay their respects.
“Being a midwife defined Anna as a person, it was what she lived for, helping women at their most vulnerable and through this profession she found many friends on the way with her infectious smile.
“May we remember this same passion in her death and may Elsie’s Retreat be her legacy and a reality for people on the Coast who need it most,” Mr Edgell said.
Inspired by Anna Edgell’s story, Ettalong business owner and lymphoma survivor, Celeste Boonearts, is taking up the cause to fight for Elsie’s Retreat.
“As a mother, every instinct is to protect our children and I was so scared for them and how cancer would impact our family,” Boonearts said.
“At the outset my disease was expected to be quite advanced and the full diagnosis took 10 months. So there was a lot of time I really didn’t know if I would have a future.
“When I read Anna’s story, that she was the same age as me and that her daughter was the same age as my son, my heart just went out to her and to her family.
“Although our illnesses were unique and different, we both heard our diagnoses as mothers who have to tell our children we have a life-threatening illness.
“I know Anna has done so much to help others in our community both as a midwife and as an advocate for this hospice which we must all fight for.
“Her courage of showing such bravery in the midst of having such a terrible illness herself, yet she still continues to dedicate herself to the community, well it’s just incredible,” Boonearts said.

Source:
Media release, Nov 30
Jane Worthington, Write This Way Media
Media release, Dec 13
Jane Worthington, Write This Way Media
Social media, Dec 2
Anne Charlton, Labor’s Candidate for Robertson

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