Intended for healthcare professionals

Feature Assisted Dying

What is it like for doctors working under assisted dying laws?

BMJ 2024; 387 doi: https://doi.org/10.1136/bmj.q2355 (Published 30 October 2024) Cite this as: BMJ 2024;387:q2355

Linked Feature

Conscientious objection: will doctors be able to opt out of assisted dying?

Linked Feature

Assisted dying laws around the world

  1. Sammy Chown, freelance journalist1,
  2. Anna Volkmer, freelance journalist2,
  3. Mun-Keat Looi, international features editor3
  1. 1Toronto
  2. 2London
  3. 3The BMJ
  1. mlooi{at}bmj.com

Doctors and patients in different countries where a form of voluntary assisted dying law is in place tell The BMJ about their experiences

My first case under Australia’s assisted dying law

Victoria was the first Australian state to enact a voluntary assisted dying (VAD) bill in 2017. Niroshe Amarasekera, a GP at the Carnegie Medical Centre in Melbourne, tells The BMJ what it was like as a working clinician at that time

“I was about seven years into working at my practice when Victoria’s bill came in in 2017. I don’t remember a lot of information communicated to doctors. I remember thinking, ‘It doesn’t affect us. If a patient asks, we refer them on. And we can’t bring it up as a care option.’ That’s it.

“It is against the law for us to bring VAD up. I still can’t start the conversation. You can get into trouble, get sanctioned.

“I’ve had three long term patients either accessing or exploring the option for accessing VAD. The first was about three years ago: she was elderly with diagnosed bowel cancer. The prognosis was poor, and the hospital had referred her. She asked me to be her second approving person—two doctors need to approve VAD under Victoria laws. One of them can be your GP but the other needs to be external [independent], and you both have to agree that VAD is in the best interest of the patient. But the doctor who prescribes or administers the drugs can be your GP if they are trained to do so.

“I hadn’t had any training in assisted dying, and the law was new at the time. Still, I said I’d support her and she put me in touch with her assisted dying navigator—that’s the patient’s primary contact throughout the process [separate from the two doctors who approve the process]. They’re usually a clinical nurse but can be another health professional.

“The navigator talked me through the process and told me I needed one day of training that ran only at specific times. Finding time to do it was hard. Most GPs in Australia do not get paid when they are not working and doing such training. It’s a big investment because I lost a whole consulting day. I’ve got to keep up with professional development as well, so it’s even more of an investment. As much as I want to help my patients who request VAD, if I’m not doing it regularly enough, I’ll de-skill.

“The same factors affect VAD consultations. If I spend 30 minutes with a VAD patient, that’s the equivalent of three other 10 minute appointments. And in Australia payment is per consultation. And that’s before we get to the paperwork, which is quite onerous. So between the training, the cost, and the paperwork, it’s not that attractive for GPs to help patients with VAD requests.

“By the time I found time to do the training, my patient’s navigator had found another doctor. That doctor offered to mentor me through the training.

“In the end my patient didn’t access VAD. But she wanted that option, and I felt honoured to be included in that process. It’s a personal decision that patients share only with people they’re really close to. To be included in that circle was a real privilege.’’

What does a doctor have to do at the time of death?

“You can only prescribe or administer the drugs if you’re qualified. When the patient is ready, the patient, a family member, the navigator, or the GP [if they have had training] can administer the drugs. It depends on what the patient prefers—some don’t want to administer themselves, others might prefer to.” [Some countries distinguish between these as “assisted euthanasia or suicide” and “assisted dying.”]

Are doctors allowed to object to VAD? And what happens if they do?

“I don’t know of anyone in my colleague group who conscientiously objects to VAD. But I can tell you about conscientious objectors to medical terminations and vaccination. If you’re a conscientious objector, it’s still your responsibility as a doctor to say, ‘This is not something I can help you with, but here are the details of a service that you can talk to and that will discuss options with you. I’ll send you to my colleague.’ Doctors do not need to reveal whether they do or don’t object. But I suspect a lot of doctors when asked about VAD say, ‘No, there’s nothing I can help you with.’ I’ve certainly seen people who say their doctor didn’t know what to do. But how could you not know what to do? Just refer. Give them a phone number.”

Victoria’s assisted dying laws

Enacted in 2017 and revised in 2021, the law permits doctors to prescribe drugs for self-administration. Doctors can also administer the drugs themselves in cases where a patient is physically unable to self-administer.

A doctor cannot raise the conversation about assisted dying in the first instance—it must be initiated by the patient. According to the act, a person’s decision to ask for VAD must be:

  • Voluntary (the person’s own decision)

  • Enduring (the person makes three separate requests for VAD during the process)

  • Fully informed (the person is well informed about their disease, and their treatment and palliative care options).

To be eligible, people must meet all the following conditions:

  • They must have advanced disease that will cause their death and that is:

    • Likely to cause their death within six months (or within 12 months for neurodegenerative diseases like motor neuron disease)

    • Causing the person suffering that is unacceptable to them.

  • They must have the ability to make and communicate a decision about VAD throughout the formal request process

  • They must also:

    • Be an adult 18 years or over

    • Have been living in Victoria for at least 12 months

    • Be an Australian citizen or permanent resident.

Two doctors need to review a request separately and make an assessment. The patient must be acting without coercion from anyone else.

Besides Victoria, five other states in Australia have legislation on “voluntary assisted dying,” which permits assisted suicide and voluntary euthanasia in specific circumstances.

Patient perspective

Mary Cate Pickett’s husband was among the first in the state of Tasmania to use new rules around assisted dying. She tells The BMJ about their experience

“My husband John and I moved to Tasmania in January 2020 just after I retired. A bit over 18 months after we moved he was diagnosed with stage 4 colorectal cancer. It was quite a shock. John was a very active, fit, healthy man of 72.

“He went through some treatment, and after a couple of rounds of chemotherapy we were told that because of a genetic mutation in his cancer there were no other treatments available, and because it was stage 4, surgery wasn’t an option.

“That was about four or five months after diagnosis—from diagnosis to the time he died was 17 months. So there was a bit more than 12 months where we were managing his illness through him maintaining as healthy a lifestyle as he could. But towards the end of 2022 he was starting to get weaker and sicker, and started to experience a lot more pain.

“Around that time, the legislation for VAD had just come in in Tasmania. John and I had talked about if either of us would use it, and we both agreed that we would.

“In January he made an initial contact with the voluntary assisted dying commission. They managed the whole process, linking us to prescribing doctors. We had to go through quite a bureaucratic process.

“There were many forms and it was all paper based. Some states have an online process. There is still always duplication—filling in the same details—but that may have been because it was relatively new. I think it is a matter of people feeling confident that the system is safe.

“John was told originally that finding a doctor was going to be challenging because low numbers had been trained in VAD. But John was stubborn and very determined. He maintained a good and constant relationship with the consultant at the commission, checking in regularly to say, ‘I’m still here. I’m still interested. Have you found anyone?’

“Then in early February 2023 a doctor was found. It was a GP in our area who had been involved in the legislation coming in. We drove an hour up to Hobart to meet the doctor, and the VAD navigator—a consultant who was a health professional, but not a doctor or nurse. That trip was challenging, because by then John was quite sick. But it started the process—that was when we submitted the first request, as it’s called.

“That was followed up by written requests and a consultation with a second doctor. Both the doctors were very supportive and clear about the process, and wanted the best for John.

“From there it was negotiations around access to the drugs for VAD, and a time that was suitable for the first prescribing doctor to be with John when the time came. In Tasmania patients can choose to be prescribed the oral drugs to take themselves whenever they want or with the doctor present. There is also the choice of intravenous administration, if the person is unable to self-administer, but John never needed that because he was still able to swallow.

“The prescribing doctor attended with two pharmacists from the prescribing service in Hobart who brought the drugs. John was able to take the drugs himself so according to the law did not need to have a doctor present. That said, throughout the process, we’d had a good local GP who supported John’s decision. He did not take an active role in the administration of the drugs or the process but he offered to be with John while he died.

“John died at home in February 2023. We had John’s GP, as well as the prescribing doctor, who was very supportive, calm, and clear about what was going to happen. He’d always been available to take calls or answer questions. For example, one of our concerns was that John might lose consciousness before he could give his informed consent and take the drugs himself.

“John was probably one of the first ten people who died using VAD in Tasmania. We were lucky in a sense. Several people who wanted VAD have not been able to access a doctor who has undergone the training. Some areas, including ours in the south of Tasmania, have fewer health professionals trained to provide VAD.

“The important thing for both John and me was that the two doctors involved with the VAD, as well as John’s GP, were respectful of John’s wishes. They could see that John clearly fitted the criteria of someone who was going to die within a prescribed timeframe, that there was no other treatment available, and that John was very clear on wanting to take the substance and to die on his own terms.

“The key thing for me was the absolute respect that came with the doctors that we dealt with, so that John felt absolutely fine with what he was doing.”

I was ambivalent—until I had to do it

The US state of California introduced the End of Life Option Act in 2015. Ryan Spielvogel, a primary care physician in Sacramento recalls the ambivalence he initially felt before it became a big part of his job

“The End of Life Option Act went into effect in 2016 and I’ve been involved since then. [Similar legislation is currently legal in 11 jurisdictions in the US covering around 22% of the US population.]

“How many people do we see for assisted dying services each year? Our health system covers about 3.4 million patients and we have a few hundred referrals a year. It trickles in. Sometimes we’ll go weeks without a referral, and then we’ll get five. The stats work out to about one in 80 hospice patients will elect for assisted dying.

“I was never taught about any of this in medical school or in residency, probably because at the time it was only legal in Washington and Oregon, not in California. In 2016 I had literally never thought about it before. I hadn’t formed an opinion one way or the other.

“A couple of months before the law was to go into effect, our health system emailed all 5000 physicians to gauge individual physicians’ comfort and desired level of involvement. They gave us several options from ‘I want nothing to do with this in any capacity for my patients or anybody else’s patients’ to ‘I would feel comfortable seeing my own patients for this or even other people’s patients for this.’

“I had been in practice for two years and I thought, if my patient asks me for this, I’d figure it out. I’m not going to turn away a patient in need. And I decided that in the rare case that a primary care physician didn’t want to take care of them, sure, I'll see somebody else’s patient. I’m not going to leave a patient in the lurch. So I chose the most permissive option and didn’t think much of it.

“A week before the law went into effect, I got an email from the coordinator of the assisted dying programmewho said, ‘You were one of eight out of 5000 physicians who chose the most permissive options. Congratulations, you’re now one of our expert, go-to assisted dying physicians. Here’s a list of seven referrals that we’ve had over the past two months who are waiting for the law to go into effect. These are now yours.’

“I saw my first patient the week after the law went into effect. I was struck by how determined this person was.

“It was an epiphany for me, seeing not just how important it was for this man to have agency and have a little bit of control in his last months of life but also how much of a gift it was to his family to be able to have a memorial for him, surrounded by friends and family, while he was still alive.

“There are definitely times when family members might not be on the same page with the patient, but that’s also the case with most families as someone is passing. And you might say, surely not everyone can be that determined? But most of the time people who access assisted dying fall into one of two categories.

“One, they are actively suffering at the end of their life, in ways that they are very uncomfortable with, so it’s somewhat urgent to them. I’ve never seen someone change their mind in that circumstance. They want it right now, and they take it the moment that the process is completed.

“Two, the person is someone who has thought about this for a long time. There’s always this fear: what if someone changes their mind at the last minute. What if they take half the dose and then say this isn’t what I want? That’s fantasy. People have numerous chances to change their mind before they actually take the drugs. It’s an erroneous notion that the patient is thinking about it for the first time when they talk to me the first time about assisted dying.

“People have been thinking about it for a while before they feel comfortable admitting to a loved one that they’re thinking about it. It’s often weeks or months, from the time that they first start considering it to the time that they are sure enough, or have got over whatever stigma they feel was attached to it enough to actually talk to a physician about it. This is not a willy nilly decision that people have come to. When I tell people, legally, there’s a waiting period, we need to make sure that you’re sure about this, they’re like, ‘What do you think I’ve been doing for the past two months?’

“What does happen is you have people who have planned ahead. Somebody, for instance, who has metastatic cancer who says, I’m doing okay right now. I’m able to take care of my own body without my family members having to wash me. But I took care of my wife, or my mother, through cancer, and I know how bad it can get. And if it starts to get bad like that, I’m done. For those people, I say, okay, if you are eligible, so we can go through the whole process in terms of getting through the requirements. And then let’s see how things go. If it gets to the point where you are suffering in a way that is unacceptable to you and you’re ready for this, you give me a call.

“This puts the patient in the driver’s seat. And maybe they don’t reach a point where they feel they need this, and I never hear from them again. Either way, I got you.

“That choice is incredibly important for the people who want it: knowing that you don’t have to go through the suffering if you don’t want to—it’s up to you to decide when the suffering is too much for you. In a way it’s similar to, say, epidurals in labour. I don’t think anybody would argue that labour epidurals are immoral. It’s about alleviating something.”

Footnotes

  • Editor’s note (4 November 2024): One interviewee for this article, Leonie Herx, requested that her comments be published separately. This section has now been removed and has been republished at BMJ 2024;387:q2423 (doi:10.1136/bmj.q2423).

  • Competing interests: None.

  • Commissioning and peer review: Commissioned; not externally peer reviewed.

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