The guest speakers were:
Amanda Bolleter (Project Manager End of Life Care, WA Department of Health) on
VAD eligibility and process requirements and an update on advance health directives;
Alice Herring (WA Voluntary Assisted Dying Statewide Care Navigator Service) on
The role of the care navigator service in WA;
Dr Clare Fellingham (Clinical Lead: Voluntary Assisted Dying, East Metro Health Service) on
The relationship between voluntary assisted dying and palliative care; and
Dr Scott Blackwell (Chair of the Voluntary Assisted Dying Board) on
The role and functions of the VAD Board.
You can watch the video of Workshop 7 below.
Q&A
The presentations were followed by a Q&A session moderated by President Steve Walker. The panellists included the speakers, together with Dr Richard Lugg and Dinny Laurence.
The Q&A was not recorded but the panellists have provided written answers to the questions asked at the workshop and sent them to DWDWA subsequently in writing. These follow in the FAQ section below.
FAQs
Note: Answers 1 – 33 have been provided to us by the Health Department, and we welcome the cooperation we have received in this regard. However, we do not agree that every answer provided is both accurate and comprehensive. The views of the committee on any particular matter can be ascertained by reference to our website or by contacting the President.
1. How transparent will the VAD Board’s deliberations and decisions be and how frequently will the Board issue a report?
As per the Voluntary Assisted Dying Act 2019, the Board will, within 6 months after the end of each financial year, prepare and give to the Minister a report on the operation of the Act during that financial year.
The report will include the following information about the Board’s decisions/deliberations:
- any recommendations that the Board considers appropriate in relation to voluntary assisted dying; and
- any information that the Board considers relevant to the performance of its functions; and
- the number of any referrals made by the Board under section 118(c); and
- the text of any direction given to the Board under section 123(1) or 152(2); and
- details of any disclosure under section 140(1) that relates to a matter dealt with in the report and of any resolution under section 142 in respect of the disclosure; and
- statistical information that the Board is directed under section 152(2) to include in the report; and
- information about the extent to which regional residents had access to voluntary assisted dying, including statistical information recorded and retained under section 152(1)(c), and having regard to the access standard under section 156.
2. Will the VAD Board collect the following information?
a) the number of people who have applied for VAD, those who have been assessed as eligible and those who have been rejected;
Yes
b) reasons for rejection
Yes
c) location of applications - as an indication of ease of access to the service
Yes
3. What happens if a patient’s first request is rejected? (see also Q17)
If the medical practitioner refuses the request because of a conscientious objection to voluntary assisted dying, they must inform the patient of the refusal immediately and provide the ‘Approved information for a person making a First Request for voluntary assisted dying’ (approved information). They then have two business days to complete the following steps:
- Document the First Request in the patient’s medical record, including the reason for refusal.
- Notify the VAD Board of the request by completing and submitting a First Request Form.
If the medical practitioner does not hold a conscientious objection, they have two business days to complete all steps:
- Make their decision and inform the patient of that decision.
- Provide the approved information to the patient.
- Document the First Request in the patient’s medical record, including the reason for refusal if the request has been refused.
- Notify the VAD Board of the request by completing and submitting a First Request Form.
The approved information includes the contact details of the Statewide Care Navigator Service to ensure the patient has an avenue for seeking support. The patient may decide to make a new First Request to another practitioner and can contact the Statewide Care Navigator Service for assistance in locating a practitioner for this purpose.
The patient may also decide to make a new First Request to the same practitioner at a later point in time if their eligibility changes.
4. Costs
a) What does VAD cost me as a patient and is it covered by Medicare?
The services of the Statewide Care Navigator Service and the Statewide Pharmacy Service are free of charge. Practitioners can charge a fee for their services as they do for other medical appointments, some of which may be covered by Medicare. Fees should be discussed directly with the practitioner.
b) Is there a limited fund available for RASS or enough to ensure that country people have equal access to VAD?
The Regional Access Support Scheme has a budget allocation for each financial year. The Statewide Care Navigator Service reports on this each month to the Department of Health. This will be carefully monitored and managed as we understand more about the requirements for use to support access to voluntary assisted dying in regional and remote WA.
5. Does the experience in other jurisdictions show that the number of suicides reduces if VAD becomes a lawful end of life choice?
There is currently no published data in Australia on the relationship between suicide rates and access to voluntary assisted dying[1].
6. I understand there is a problem with using telehealth in some circumstances. Can something be done about this to ensure that people in remote WA have access to VAD? (see also Q35)
The Commonwealth Criminal Code Act 1995 contains offences which limit the use of a carriage service to access and transmit suicide-related material. In practical terms, a ‘carriage service’ refers to phone, fax, email, internet and videoconference.
Any information that relates specifically to the act of administering a voluntary assisted dying substance or provides details or instructions about the act of administration must not be discussed or shared by phone, fax, email, videoconference, internet and the like. As a result, there are some discussions that must occur in person and cannot occur over phone or telehealth. Similarly, there is some information that must be provided in hard copy and cannot be provided by email or fax.
Videoconference/telehealth can be safely used for provision of a significant amount of care throughout a patient's voluntary assisted dying journey, such as making a First Request, and conducting the First and Consulting Assessments (where appropriate). To support care provision and equity in access across rural and remote WA, the Regional Access Support Scheme has been created to facilitate travel of a person to a practitioner, or a practitioner to a person, where this is required.
7. What is ‘the community of practice’ and why is it important?
An important way to address the challenging aspects of voluntary assisted dying is to connect with others who are also providing voluntary assisted dying services to patients and families. A community of practice supports practitioners by providing an inclusive forum that can offer practical and emotional support.
The WA VAD Community of Practice brings together practitioners actively engaged in the voluntary assisted dying process, including medical practitioners, nurse practitioners, pharmacists from the Statewide Pharmacy Service, and the Care Navigators. This peer support network provides opportunities for members to share their experiences, support each other, learn from one another and seek guidance from senior practitioners with experience in palliative and end-of-life care, and managing complex deaths.
8. Why is the content of the VAD training secret? If this is just one more end of life choice, shouldn’t it be seen for what it is, a legitimate part of medical practice?
The content of the WA VAD Approved Training is accessible to any eligible practitioner who intends to engage in the voluntary assisted dying process, or who wants to know more about what the process involves[2].
9. How difficult is it to switch from self-administration to practitioner administration (or vice versa) and how is this done?
The process for this is not difficult, and steps are outlined for the Coordinating Practitioner.
The patient must first notify their Coordinating Practitioner of their decision to revoke their administration decision (e.g. for self-administration). This can be done in writing, verbally, using gestures or in another way (such as through a communication aid). The Coordinating Practitioner will then complete and submit the ‘Revocation Form’ to the VAD Board.
Following further discussion with their Coordinating Practitioner, the patient may make another administration decision (e.g. for practitioner administration). If required, a new prescription will be written for the patient and sent to the Statewide Pharmacy Service. [3]
10. (a) If I choose self-administration, to what extent can my family or someone present at the time help me to take the VAD substance?
Self-administration of the voluntary assisted dying substance requires the patient to prepare and ingest the substance by swallowing or via a percutaneous endoscopic gastrostomy (PEG) or nasogastric (NG) tube. The patient needs to be able to complete these actions entirely by themselves without assistance from someone else[4].
(b) If someone helps me to take the VAD substance, e.g. by lifting a cup to my lips, does this qualify as ‘assisting a suicide’ and be grounds for prosecution? (see also Q25(1))
Under the Act, the patient cannot be assisted with preparing the substance (which includes decanting, mixing etc.) or with the physical act of ingesting the substance. This includes assistance with using their PEG or NG tube. If the patient is unable to independently undertake these actions or is concerned about their ability to undertake these actions, self-administration is not a suitable option for them.
11. What provisions are made for patients who are non-verbal or who cannot sign a written request?
Non-verbal patients can go through the request and assessment process and the administration process using their usual means of communication (e.g. a text-to-voice communication aid).
If the patient is unable to complete the Written Declaration, they can have someone complete it on their behalf. This person must:
- be 18 years of age or older
- not be one of the two witnesses to the signing of the Written Declaration
- not be the Coordinating Practitioner or the Consulting Practitioner
- sign at the direction and in the presence of the patient
12. What provisions are there for the use of technology, especially if I am unable to speak or sign a request?
Technology is frequently used to support communication in relation to voluntary assisted dying, as it is in other forms of care, including text-to-voice and typed communication. Any part of the request and assessment process or the administration process can be conducted using the usual means of communication of the patient.
Where a signature or written documentation is required (e.g. the Written Declaration), another person can complete the documentation on behalf of the patient, provided the person meets the necessary criteria.
13. Are there any prohibitions on talking about VAD to friends? (see also Q18)
It is entirely the patient’s decision as to who they discuss their thoughts and intentions about voluntary assisted dying with. However, practitioners or staff caring for a patient who has decided to access voluntary assisted dying may prefer discretion and may not want the patient to share their details when talking to people outside the process.
14. If I am a witness to a person’s written declaration or to a practitioner administration, am I prohibited from talking about the experience to another person (without disclosing the person’s name)?
Discussing this experience is a matter of individual choice. However, unless they have confirmed otherwise, it is best not to identify the patient, practitioners and staff involved as they have a right to confidentiality.
15. If I am the Contact Person for a person who has chosen self-administration, are there constraints on my discussing my role with others if I need support? Do I have to keep the name of the person confidential and if so, can the person release me from that obligation?
This should be discussed with the patient before accepting the role of Contact Person, as each person will have different feelings on who they would like to be aware of their decision to access voluntary assisted dying. The role of Contact Person is an important one and the Statewide Care Navigator Service and Statewide Pharmacy Service are available to talk through the Contact Person role if extra support is needed.
16. What happens with people who have no family? Can provision be made to ensure that they don’t die alone?
Each patient’s choice around the timing of their death and who they wish to have present is unique and individual. The Coordinating Practitioner and the Statewide Care Navigator Service can assist with planning for death, including how someone can be present at the time to provide support.
17. If the first doctor assesses me as ineligible, am I free to approach another doctor or doctors for a second opinion?
Yes. If a patient is found ineligible by their medical practitioner, they may decide to make a new First Request to another medical practitioner. This would not be a ‘second opinion’ but commencement of a new process. The patient can also make a new First Request to the same practitioner at a later point in time if they believe their eligibility has changed.
A discussion with the practitioner as to why the patient is ineligible for voluntary assisted dying is encouraged and may assist in determining next steps.
18. Is a doctor who is a family friend free to discuss VAD with me outside a medical consultation?
Yes, provided they feel comfortable and are willing to do so. However, a request for access to voluntary assisted dying made in this setting would not meet the requirements of a First Request, which must be made during a medical consultation.
19. If I have been diagnosed with Alzheimer’s in a mild form, but also have a terminal illness and satisfy the other eligibility criteria for VAD, can I opt for self-administration (provided I still have the mental capacity to make the 3 requests) and take the VAD substance when it suits me?
A person with Alzheimer’s who meets the eligibility criteria and completes the request and assessment process is eligible to access voluntary assisted dying. However, they must maintain their eligibility throughout the entire process. This includes up to the point of self-administering the substance.
20. Is there a time line on using the VAD substance once a request has been approved?
No, there is no timeframe as this is intended to be an individual decision.
21. Alice said that the SWCNS is not an emergency service because VAD is a considered choice. But sometimes for a patient at risk of losing capacity or dying it is an emergency. What does the patient do then?
The Statewide Care Navigator Service is not essential for a person to access voluntary assisted dying. The service is provided as a support for those who choose to access it and can be contacted at any stage in the voluntary assisted dying journey.
A patient can always reach out to their Coordinating and Consulting Practitioners and the Statewide Care Navigator Service; however, it is important to be aware that they may not always be available in emergencies.
22. Witness to the written declaration
A witness to the second request must ascertain from the patient if they are signing voluntarily and without coercion.
Note: The patient must source two witnesses for the Written Declaration or request assistance to do so.
Do the witnesses have any other responsibilities? For example:
a) If the patient or the coordinating practitioner asks them to do so, can the witness agree to deliver the signed and witnessed declaration to that practitioner if the patient is not able to do so?
Yes, provided they are willing and able to do so.
b) If no to (a), can they get the declaration signed in duplicate, leave one executed and witnessed original with the patient and deliver the other to the practitioner?
Yes, provided one original is provided to the Coordinating Practitioner.
23. (a) Who can be a witness to a practitioner administration? Can you be a family member of the patient or a person who works with the administering practitioner?
The witness to a practitioner administration must:
- be 18 years or older
- not be related to the Administering Practitioner
- not work for the Administering Practitioner
The witness can be a family member of the patient provided they meet the above criteria and are willing and able to do so. It is important to carefully consider this role as this can be an extremely emotional time for families.
(b) Can the witness talk to the media about the experience if the patient has consented to this (or requested it)?
If this is something the witness is considering, they are encouraged to discuss this with the Coordinating Practitioner and the Statewide Care Navigator Service prior to talking with the media. The patient’s wishes should be carefully considered, as should the right to confidentiality of the practitioner, staff, and health service/s caring for the patient.
24. If you are a contact person for a patient who chooses self-administration, can you be liable if a third party consumes any left-over VAD substance without your knowledge?
The Contact Person is responsible for giving any unused or remaining substance to an Authorised Disposer for correct disposal. Liability would depend on the circumstances of the case in question.
25. Guidelines inconsistent with Legislation
If the Guidelines go further than the legislation, will consideration be given to amending the Guidelines and if so, how will this be done?
Examples:
Self-administration without any assistance:
The Guidelines state explicitly that “Under the Act, they cannot be assisted with preparing the substance (which includes decanting, mixing etc.) or with the physical act of ingesting the substance. This includes assistance with using their PEG or NG tube”, but this is not consistent with the legislation.
Expiry of eligibility and approved training after 3 years is in the Guidelines but not in the legislation (noting that the CEO requirements apply to qualifications not training).
The Western Australian Voluntary Assisted Dying Guidelines provide detailed and up-to-date guidance on the voluntary assisted dying process in Western Australia. If changes are made to the voluntary assisted dying process in Western Australia these will be reflected in updated Guidelines.[5]
Faith-based questions
DWDWA Note: By far the biggest volume of questions DWDWA received was on this subject, but, understandably, our guest speakers are not willing to speak on behalf of faith based institutions.
DWDWA therefore encourages anyone who is considering VAD as an end of life option, to satisfy themselves about these issues before going into an acute care hospital, any aged or other residential institution, or a palliative care hospice.
The SWCNS has established working relationships with many such institutions and may be able to support you, especially if you find yourself admitted to care where access to VAD is not facilitated. SWCNS email: [email protected] or tel: (08) 9431 2755 during standard working hours (8.30a.m – 5.00p.m.)
If the SWCNS is not available, contact DWDWA: https://www.dwdwa.org.au/contact
26. The Catholic sector has been recalcitrant in its approach to the new law. Being by far the largest organisation in the Western Australian private hospital, palliative care and shared services facilities, their control of procedures that they allow or proscribe is widespread and rigorously applied.
- What is their sanctioned approach to VAD within the facilities they control?
The Catholic health sector is best placed to answer this question for itself.
- Are there any penalties for professional staff who choose to embrace VAD, either within any particular facility or otherwise, throughout their organisation?
The Catholic health sector is best placed to answer this question for itself.
- Should VAD be denied, is there an acceptable referral system in place and how would this work?
The ‘Approved information for a person making a first request for voluntary assisted dying’ booklet provides the contact details for the Statewide Care Navigator Service which can assist.
- If VAD is denied within the Catholic Palliative Care Programme, how will patients be advised before admission and what are the mechanics of the patient being moved on/out, if already admitted to a non-complying establishment?
Several faith-based services have shared their positions on voluntary assisted dying publicly and all patients who have an interest in accessing voluntary assisted dying are encouraged to discuss this with care providers.
Should a patient wish to access voluntary assisted dying while an admitted patient of a service which does not facilitate access, they are encouraged to contact the Statewide Care Navigator Service for support.
27. Are policies on VAD the same across the board for faith-based institutions? If not, how do they differ?
Each organisation is best placed to answer this question for itself.
28. Will the SWCNS provide a publicly available list of facilities (aged care, nursing homes, palliative care etc) and their policies on VAD to enable me to make the right decision about where to go if I have to leave home?
No. The Statewide Care Navigator Service is not able to speak on behalf of other services or institutions. Patients should discuss a facility’s position on voluntary assisted dying as part of their decision-making process.
29. At an ABC forum a few months ago a representative of SJOG (Lou Angus) said that nothing will be done at a SJOG facility to impede a patient’s right to VAD if eligible. What does that mean in practice?
- If I am in a SJOG palliative care facility and want to access VAD would the facility assist me to go somewhere else to do this?
- If a locked box has been provided for the safe storage of the VAD substance can I ask a nurse to give it to me with a glass of water if I am unable to get out of bed?
- Can my own doctors visit me to do eligibility assessments on SJOG or other faith-based premises?
- What about practitioner administration?
- Do the same rules apply to faith-based palliative care and other residential facilities as to acute care hospitals?
- What do people choosing VAD in country areas do if a public hospital is not available?
St John of God Healthcare is best placed to answer these questions for itself.
30. In a PC facility that permits VAD, will a patient’s treatment still depend to an extent on the treating doctor’s own view?
Each medical practitioner has the right to consider their own position in relation to voluntary assisted dying. They may choose not to undertake a role under the Act, or not to discuss voluntary assisted dying outside of their mandatory requirements in response to a First Request.
Many people choose to explore voluntary assisted dying as part of their end-of-life choices, while also receiving palliative care.
31. How does the Care Navigator Service work with faith-based healthcare institutions to enable those whom they look after to access VAD if they wish to?
The Statewide Care Navigator Service works closely with all services caring for people choosing to explore voluntary assisted dying. This includes working to understand the organisation’s position and providing collaborative and cohesive care to support the patient’s wishes.
32. The By-laws of St John of God Healthcare prohibit employees and accredited health practitioners from providing VAD-related health care whether on SJGHC premises or elsewhere and are at risk of suspension or dismissal if they do so. Does this mean
- that a nurse practitioner risks losing his or her job at a faith-based institution for participating in the VAD process?
- that a doctor risks not having his or her accreditation renewed for participating in VAD even if on other premises?
- If yes, is this provision contrary to the anti-discrimination provisions of the WA Equal Opportunities Act?
St John of God Healthcare is best placed to answer these questions for itself.
33. AHDs
a) When are the new AHD form and dedicated register likely to become available?
The new AHD form will most likely be available in mid-2022 and the full complex Register will likely be available in late 2023/early 2024.
b) Will I have to re-do my existing AHD when that happens or will the information I have lodged on MyHealthRecord be automatically transferred to the new register?
Individuals do not have to re-do their AHD once the new form is active. Existing advance care planning information within an individual’s MyHealthRecord will most likely be transferred to the new AHD Register. The full design of the AHD Register is yet to be determined.
c) Will sample forms be provided to help people complete an AHD under the new regime?
Yes, sample forms will be provided to help people to complete the revised AHD form.
Answers 34 – 36 below were provided by DWDWA moderator Steve Walker, and panellists Dr Richard Lugg and Dinny Laurence
34. Question to Richard
(a) Must witnesses satisfy themselves as to the identity of the patient?
A: There is no statutory requirement for this to happen. A witness may elect to check with the patient as to their identity, and the Department of Health has said that in its view, witnesses ought to be comfortable as to the patient’s identity, but there is no such obligation at law. Nor does the written declaration form provide any space for a notation to that effect.
(b) Must witnesses satisfy themselves that the patient understands the nature and effect of the declaration?
A: There is no statutory requirement for this to happen. There was a deliberate decision to depart from the Victorian precedent in this respect, although the Department of Health has said that in their view, it ought to happen. However, there is no such obligation at law. Nor does the written declaration form provide any space for a notation to that effect.
35. Question to Steve/Richard
What can be done in WA to ensure that this “telehealth” issue does not become a beat-up as it has in Victoria?
A: These are reasonable guidelines for doctors when discussing VAD options with a patient over a carriage service:
- Be sure to make clear that you are not favouring self-administration over practitioner administration – this is the patient’s choice in consultation with their coordinating doctor.
- If self-administration is decided upon, be sure to make clear that instructions will be provided to the patient in writing (NOT by email), and that anything that you say over a carriage service is not to be construed as any form of instruction on how to prepare or take the VAD substance.
- Apart from the above limitations (which are suggested out of an abundance of caution) there is pretty much nothing that cannot be safely discussed over a carriage service.
In due course it is hoped that confirmation will be obtained from the Federal Government that the provisions of the Commonwealth Criminal Code should not apply to anything done lawfully under the Act. This will logically lead to the repeal of s. 158(4) of the Act, which in turn will mean that doctors and their patients will be able to communicate freely about VAD by audio-visual communication as authorised by sections 158(1)-(3) of the Act.
36. Questions to Dinny
a) Can you do your own AHD or must you use the standard form?
A: An AHD must be in the form or substantially in the form of the official form provided by the Department of Health at http://www.health.wa.gov.au/docreg/education/population/HP11536_advance_health_directive_form.pdf
A common law “living will” will also be effective provided it complies with the statutory requirements, such as being witnessed by one competent adult and one person who is a person authorised under the Oaths, Affidavits and Statutory Declarations Act 2005 https://www.publicadvocate.wa.gov.au/_files/statutory_declarations_witnesses.pdf
b) Is it a requirement that I get medical or legal advice before signing an AHD?
A: Not a requirement, but it is advisable to talk to your doctor to make sure that a medical person confirms that the treatment decisions you have made and the circumstances in which they are to apply are clear.
c) How will someone know that I have an AHD?
A: It is advisable to leave a signed and witnessed copy of your AHD with your usual doctor and next of kin and to register it on https://www.myhealthrecord.gov.au/
You can also carry an “alert card” in your wallet.
d) If I have an AHD why do I also need an enduring power of guardianship (EPG)?
A: The AHD is at the top of the hierarchy of decision makers in that it is “your voice” when you do not have capacity, whether temporarily or permanently. Next in line is the EPG. It is sensible to have an EPG – in favour of someone who knows you well, including your values and preferences and the decisions you would be likely to have made in any particular circumstances. In cases where your AHD is not clear and unambiguous in relation to a particular treatment decision or the circumstances in which it will apply, your enduring guardian is the person who will guide your health professionals to do what you would have wanted had you had the capacity to express it.
e) If there have been medical advances since I made my AHD, would my medical practitioners be able to override the instructions in my AHD?
A: Possibly, depending on the circumstances. Section 110(S)(3) of the GAA Act states that a “treatment decision in an AHD does not operate” if circumstances have arisen that the maker of the AHD would not have anticipated at the time of making it; and that “would have caused a reasonable person in the maker’s position to have changed his or her mind about the treatment decision” (emphasis added).
Three ways of safeguarding against this are:
- Update your AHD from time to time;
- Insert a provision into your AHD to make it clear that any advances in available medical treatments would/would not change your directives;
- If you do not have an AHD or the AHD you do have is old and/or possibly ambiguous, your doctors would be required to consult your enduring guardian before making a treatment decision for you. Having an EPG in these circumstances is important and it should contain a provision something like this:
“If circumstances (including but not limited to any medical advances or improvements in technology or treatments) have arisen that I would not have anticipated at the date of signing any AHD I have executed or at the date of signing this enduring power of guardianship, then I authorise my enduring guardian to consent to treatment or other actions on my behalf only for the purpose of alleviating my pain or making me comfortable, but I do not authorise him/her to consent to treatment or actions for the purpose of prolonging my life”.
f) Can I direct in my AHD what treatments I consent to or refuse if I subsequently get dementia and lose capacity?
A: Yes, in exactly the same way as you can do this when you no longer have capacity for any other reason, whether permanently or temporarily.
g) Can I ask for VAD in an AHD?
A: No, because you have to have mental capacity throughout the VAD process.
Also the existing AHD form contemplates only treatments that you consent to or refuse in specified circumstances, and VAD does not easily fit into that description. Note, however, that a request for a particular treatment (for example terminal palliative sedation, which is legal in some circumstances) may be provided in an AHD. If you make such a request it would be advisable to confine it to circumstances where your health professionals deem that treatment appropriate.
[1] DWDWA respectfully notes that the question relates to “jurisdictions” in which VAD is lawful, not only Australia.
[2] DWDWA respectfully notes that this statement does not answer the question
[3] This answer does not state how long such a switch is likely to take. This information may be provided by the VAD Board in its reports and DWDWA will also endeavour to collect such information over the next 18 months.
[4] This answer accurately reflects what is in the Guidelines but not what is in the legislation. DWDWA refers you also to sections 113 and 114 of the Voluntary Assisted Dying Act 2019 which provide protection from liability in certain circumstances.
[5] DWDWA respectfully notes that this statement does not answer the question.