“There was a giant elephant in the room,” said Katie. “We felt we were having an affair as Dan was in the process of arranging an assisted death whilst knowing the hospice don’t allow it on their premises.
“It added this huge level of stress and anxiety around where he would die. Hospices are the right place. They look after people with love. They’re amazing. Why do they get to make this decision that they’re not going to allow it? It’s absurd.”
The Herald reported earlier this month that the Ministry of Health has recommended that hospices and other care facilities should have to allow assisted dying on their premises – but only if the patient lived there fulltime. The existing law allows individuals to object to taking part in assisted dying but is unclear on the role of institutions.
Dan did not want to have the procedure at home because they had a 7-year-old son. After being in and out of hospitals and medical centres with pseudomyxoma peritonei (PMP) for two and half years, “the last place he wanted to die” was in a medical facility.
Some terminal patients have chosen to have their assisted death outdoors, including at the beach, the bush or at a farm, but Katie said this was not practical for their family and did not resonate with her husband.
Not knowing how quickly he could deteriorate, she was concerned that he would have to be admitted to a hospice and then later “bungled into a van” to die offsite.
In the end, a private business in central Wellington offered to provide a venue for him to die. That company did not want to be named because of concerns that any publicity would affect their business.
Mary Potter Hospice chief executive Tony Paine said they were unable to comment on an individual case, but said palliative care and assisted dying were “two distinct and different services”.
“While both palliative care and assisted dying are concerned with end-of-life issues, Hospice care seeks to provide comfort and support without hastening death, whereas assisted dying involves actively helping a person to die when they wish to do so – something that sits outside what we deliver as palliative care,” Paine said in a statement to the Herald.
“While we do not provide assisted dying services, we do continue to support patients with their specialist palliative care needs if they choose assisted dying. Patients wanting both palliative care and assisted dying can receive both, however, assisted dying doesn’t take place on our premises or with our staff present.”
Hospice New Zealand, the national body, sought a clarification from the High Court in 2020 on whether hospices could conscientiously object to having assisted dying on their premises. A judge found that the End of Life Choice Act did not require hospices or other organisations to provide assisted dying services and they were entitled not to provide these services.
The ministry, in its review of the End of Life Choice Act, concluded that the balance of rights should favour the consumer accessing healthcare – including assisted dying services. It recommended that hospices should not be able to prevent a doctor from assessing a patient for assisted dying or helping them to die onsite. If the patient was well enough to be transferred to another site, the facility would have to arrange this.
Any attempt to change the law is likely to face significant opposition from hospices and religious groups. The Catholic Church told the ministry that a law change would “significantly impact the atmosphere” of rest homes and hospices.
Among those who raised the issue with the ministry was the Health and Disability Commissioner, who cited a case in which a patient had set a date for their assisted death and was then admitted into a care home.
Once the head office became aware of their plans to have an assisted death, the care home was asked to “exit” the patient, “despite their very advanced decline”.
“We have also received several complaints about care homes and hospices where families have raised concerns about being treated in a disrespectful or discriminatory manner once staff became aware that their loved one was pursuing an assisted death,” the commissioner said.
Totara Hospice, in Auckland, is the only facility in New Zealand which allows assisted dying onsite. Its leadership has previously said that patients at the end of their lives should be free to make the choice that is right for them.
Katie said she hoped the law would change to require other hospices to follow their example.
“These people are dying. They get to make one decision on what that looks like. So that decision should be supported, fully supported, and not made harder.”
Isaac Davison is an Auckland-based reporter who covers health issues. He joined the Herald in 2008 and has previously covered the environment, politics and social issues. He has covered assisted dying issues since the End of Life Choice Act was first drafted.
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