As the new assisted dying law takes effect, Jessica Young argues it is important to ensure everyone knows what is and isn’t permitted

The End of Life Choice Act (2019) passed into law at the weekend, but there may be significant misunderstandings about aspects of the assisted dying process.

The Act legalises assist­ed dying for adults who are assessed by at least two medical practitioners as meeting specified criteria.

These criteria, whether you agree with them or not, as well as the procedural steps that the Act stipulates, are complex. To be eligible for assisted dying under the Act, two doctors must agree that a person meets, and continues to meet throughout the appli­cation process, all of the following criteria:

– be aged 18 years or older;

– be a citizen or permanent resident of New Zealand;

– have a terminal illness that is likely to end their life within six months;

– be in an advanced state of irreversible decline in physical capability; and

– be experiencing unbearable suffering that cannot be relieved in a way that is acceptable to them.

Now that the referendum is complete, the spotlight should move away from whether we should pass such legislation and on to how we should implement it, and how we measure its outcomes.

As the law stands, I am concerned members of the public are unaware that the onus is on them to make an explicit request for help to die.

If people do not realise that doctors are prohibited from raising assisted dying as an option, they may assume assisted dying is not an available alternative for them or that they are ineligible. They also need to know that when they speak of their suffering it needs to be in a way seen as legitimate by the doctor.

Health literacy and navigating a complex system play a crucial role here. These communication issues may mean the availability of assisted dying is inequitable in practice.

Health practitioners need to understand the nuanced reasons that people may consider assisted dying. This important communication will affect healthcare outcomes for people approaching the end of life, as well as affecting their whānau, at a crucial time in their lives. From my research with dying people, people said they wanted to be trusted by doctors to decide for themselves, if and when the time was right for them to choose to die.

While ensuring no one is coerced and avoiding suggestibility are important, the prohibition on initi­ating the first assisted dying conversation becomes problematic in practice. A concern is that practitioners may avoid any discussions for fear of repercus­sions.

A doctor raising the option of assisted dying would be in breach of the Act and open to a complaint to the Health and Disability Commissioner and further consequences.

The attending medical practitioner, who is responsible for overseeing the application, has other obligations they must fulfil.

They must do their best to ensure that a person’s expressed wish to access assisted dying is made free from pressure, including ensuring the person understands their other options of end-of-life care and knows they can change their mind at any time.

If at any point the attending medical practitioner or nurse practitioner, who is permitted to administer the medication, suspects on reasonable grounds that a person is being pressured about their decision, the attending medical practitioner must stop the process immediately and report it.

If either assessing doctor is not satisfied of the person’s competence, then a psychiatrist must also assess the person. To protect people who may be vulnerable, the Act excludes people whose sole reason for requesting assisted dying is because of advanced age or having a mental disorder or mental illness, or a disability of any kind.

Translating legislation into clinical practice, especially a new area of practice, is challenging for all people and services involved. Attention must be paid to training for all health practitioners and additional training for assisted dying providers, including ensuring cultural safety.

End-of-life tikanga (correct protocol) and kawa (customs) hold special significance for Māori regarding assisted dying, as well as for other cultures too. As the person is encouraged to discuss their decision with their loved ones, there is scope to include family/whānau in the decision-making process.

Health practitioners should be proactive in discussing cultural needs, while acknowledging the diversity among Māori. Given substantial evidence of bias that disadvantages Māori and issues of access to care, providing culturally responsive care and equitable access to assisted dying, while at the same time safeguarding structurally disadvantaged populations, is crucial.

The data to be collected by the Ministry of Health is vital to ensure research can track trends of use, to monitor safeguard adherence to protect vulnerable populations, and to ensure access is only granted to those who are eligible.

Safeguards, each of which have merit on their own, when put together can become burdensome for those involved, and may undermine the stated aim of the law—to establish a lawful process for assisting eligible persons to request medical assistance to end their lives. Monitoring this is essential too.

While the end of life is not easy to talk about, we all need to be willing to discuss dying, assisted or otherwise. Doing so is an opportunity to open and deepen the conversation about dying.

Talking about dying will not lead to fewer deaths, but it should facilitate better deaths.

Dr Jessica Young is a Postdoctoral Research Fellow in the School of Health at Te Herenga Waka - Victoria University of Wellington.

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