Phillip Higgs did not want to die in hospital, but it took the last-minute intervention of a chaplain to ensure he got his wish.
Subscribe now for unlimited access.
or signup to continue reading
Bed block at Canberra's only palliative care hospice, understaffed wards and poor communication made the 81-year-old's final days unbearable, his tearful family told an ACT parliamentary inquiry on Thursday.
The inquiry on end-of-life choices has largely focused on voluntary assisted dying, currently illegal in the ACT, but has also laid bare glaring deficiencies in the palliative care system.
Phillip Higgs' daughter Michelle Heine said while she believes her father would have wanted the option of euthanasia, the Canberra Hospital needed to have a palliative care ward with dedicated staff.
There are only 19 palliative care beds in Canberra at Clare Holland House, a hospice run by the same company as Calvary Hospital.
Although Mr Higgs, 81, had lived with chronic lymphocytic leukaemia for 29 years, he worked full-time until the age of 76, and played golf until he was 79.
But last February, he developed a sore that wouldn't heal. His GP initially wasn't worried but when a biopsy was done, they discovered it was melanoma.
Eleven cancerous lymphnodes were removed from his groin, but then Mr Higgs developed lymphodoema in his left leg.
The wound where his lymphnodes were cut out never fully healed and he was in too much pain to move around properly.
Later Mr Higgs had a fall and was rushed to the emergency department, where scans revealed the cancer had spread to his brain.
Mr Higgs wanted another six months of life so he opted for radiation, but after one round of treatment was rushed back to the ED with cellulitis in his leg.
He spent four days in the intensive care unit before he was transferred to the oncology ward.
He had four more rounds of radiation before he had a seizure on Christmas Day, which left him unable to speak.
“When his speech went, that was a killer, being a person who loved to talk. He couldn’t handle that. He would open his mouth, and he’d just, he couldn’t get out a syllable," his wife, Marie Higgs said.
On December 29, a ward doctor pulled the family aside and warned them Mr Higgs was seriously ill.
"I said to him 'I have a son in Singapore, do I call my son?' and he said 'yes'. That’s the last contact we had with a doctor," Mrs Higgs said.
The cancer in his leg was causing him excruciating pain and his family weren't told he could have morphine whenever he needed it.
They weren't even told his organs were shutting down, so their attempts to feed him were futile.
“Because he wasn’t eating, we asked if it was possible for him to be put on a drip and for three days they kept avoiding us and saying 'we’ll talk to the doctors' but nothing ever happened," Mrs Heine said.
“Every time dad opened his mouth we were feeding him with a syringe with a protein shake.
"We asked the doctor to come and see us at 9am the one day and they avoided us until 5pm, we were literally standing in the doorway of the ward overlooking the nurses station, saying 'we really need to see someone, we really need to see someone'.
"It was only then they came in to say stop feeding him, what we were doing was detrimental, they basically said he was likely to choke on the fluid because he was already starting to have a little bit of a cough."
That cough, Mrs Heine learnt from Google, was the death rattle, a telltale sign the end was near.
"No one came to us to explain what happens in death, like what were the next stages he would go through, nothing. No social workers, no one came to see us at all until eventually we called the hospital chaplain and asked if he would come and do a little service in the room with my dad," Mrs Heine said.
That morning, Mrs Heine had called Clare Holland House to try and get a bed for her father but was told they were only operating 17 of 19 beds because of low staff and all were full.
The next day, the chaplain came back to see if he could help. Forty-five minutes later, the family was told a bed had become available at Clare Holland House.
While the nurses did not think Mr Higgs' would make it out of the ward, he arrived at Clare Holland House and was able to spend an hour under the gazebo with his family. It was the first fresh air he'd had in weeks.
He spent one night at the hospice, and at 6am the next morning nursing staff warned the family his breathing had changed and the end was near.
With all of his children around him, brushing his hair and holding his hands, Mr Higgs died on January 9.
"I would have liked him to know he was cared for in that way earlier than in the last day but at least we kept our promise not to let him die in the hospital, we fought so hard to not have that happen," Mrs Heine said.
Mrs Higgs said the families of dying patients should be told what to expect.
"There should be a process," she said.
