Definition, variations in law, responding to an assisted dying request, procedures after death, conscientious objection, the healthcare team, suggestions for practice, recent research
Three sections follow:
1. Background Material that provides the context for the topic
2. Suggestions for Practice
3. A list of Supporting Material / References
Feedback welcome!
Introduction
Assisted Dying is given different titles in various countries. For example, in Australia it is called ‘Voluntary Assisted Dying’ (VAD), and in Canada it is referred to as Medical Assistance in Dying (MAID or MAiD). This post uses VAD when referring to assisted dying.
“Voluntary assisted dying (VAD) is the assistance provided by a health practitioner to a person with a terminal disease, illness, or medical condition to end their life. It includes:
self-administration, where the person takes the VAD medication themselves, and
practitioner administration, where the person is given the medication by a health practitioner.
‘Voluntary’ means it is the person’s voluntary choice. The person must have decision-making capacity to decide to access VAD. As social workers cannot legally initiate discussions about VAD to a client, their role would be in palliative care or generic counselling, where they are supporting their client to work through issues of grief and loss” (AASW, 2024).
Background Material
This Background Material section is drawn from the End-of-Life Essentials course called Voluntary Assisted Dying in Acute Hospitals. It is available (after you register or log in) at https://education.endoflifeessentials.com.au/course/about/vad. The course is about Voluntary Assisted Dying (VAD) in Australian hospitals.
Summary
There are strict eligibility criteria to access VAD.
VAD is not an alternative to palliative care services.
Only the patient can request VAD. No one can request VAD on someone’s behalf.
There are state based variations in Australian VAD law.
Each hospital will have specific policies and procedures related to VAD; it is important that practitioners are aware of their workplaces expectations.
A health professional is protected if they are a conscientious objector to VAD. They will not be compelled to participate in the process. However, they cannot impede or obstruct access to the VAD process.
Health practitioners should care for patients accessing VAD in line with their professional code of conduct and duty of care.
Statewide VAD Care Navigator services offer advice and support for patients, families and health professionals.
What is VAD?
It is important to know:
VAD is not for every patient. VAD is a legal end-of-life option for eligible patients who are terminally ill.
VAD patients will die from VAD or their illness; it is not an option for patients who will recover from their illness.
VAD is a legal process that involves multiple professionals and takes time to approve (in most cases at least two weeks).
Variations across Australian States
VAD laws operate in all Australian states and the Australian Capital Territory. It remains illegal in the Northern Territory. In all states, participating medical practitioners (and nurse practitioners or nurses where relevant) must have completed mandatory training specifically concerning the VAD process, prior to acting as coordinating, consulting, or administering practitioner.
What practitioners are allowed to say and do regarding VAD varies in each state and across different organisations. It is important for practitioners to check their organisation’s current policy regarding VAD. The End-of-Life Law website (https://end-of-life.qut.edu.au/assisteddying) discusses the laws on VAD both in Australia and internationally, and their intersection with palliative care and medical treatment decision-making. Further information and factsheets about VAD are available from each state government’s website.
What prompts a person’s VAD request?
Changed circumstances in their illness trajectory, e.g. deterioration or disease end stage, new diagnosis, exacerbation in pain, change in prognosis, transitions to care or change in care needs, hospital admission or surgery.
Personal circumstances such as:
A way of reclaiming control, being heard
Offers hope and comfort
Finding a way to end suffering
Avoiding being a burden to others
Maintaining independence or autonomy, self determination
Used to start discussions around getting affairs in order
Seeking reassurance, support, symptom management
Very certain, clear in their own mind as to what is important to them
When a person is admitted into hospital it may be a time of reflection and reassessing their current trajectory, prompting the patient to request or utilise VAD.
VAD request in hospital
A patient may be requesting VAD for the first time in hospital due to reaching a crisis point personally, their treatment not going as planned, or not getting a response from previous health team members (such as their GP or specialist). When a request in made it is useful to remember the CARE mnemonic:
Clarify
Meet the patient with concern and respect.
Listen actively and without interrupting.
Acknowledge
Encourage the patient to express how they are feeling.
Explore the patient’s thoughts about not wanting to live anymore.
Respond (within your role)
Inquire about the patient’s personal and social resources.
Document the discussion in the patient's medical record.
Escalate
With the consent of the patient, inform other members of the treating team while maintaining patient confidentiality.
Discussing VAD or end of life with a health practitioner does not begin the VAD process. The VAD process commences once the patient makes a clear and unambiguous request to a medical practitioner to access VAD, called a first request. Once a patient has communicated with a health practitioner that they would like information about VAD, the practitioner can choose the extent of their involvement. Conscientious objection is an option, discussed below.
In some states, a discussion with a patient regarding VAD must not be initiated by a registered health practitioner under any circumstance. This ensures that patients who wish to consider VAD do so of their own volition. After a patient has requested it, staff may provide patients with information about VAD. For example, in New South Wales the following information should be provided:
Medical practitioners: They must inform the person of available treatment options and their likely outcome, and available palliative care options and their likely outcome.
Nurse practitioners: They must inform the person that the person has palliative care and treatment options available, and should discuss these options with a medical practitioner.
Registered nurses: They must inform the person that a medical practitioner is the most appropriate person to discuss VAD and their other treatment and palliative care options with.
Other registered health practitioners: They must inform the person that the person has palliative care and treatment options available, and should discuss these options with a medical practitioner.
Other healthcare workers: They must inform the person that the person has palliative care and treatment options available, and should discuss these options with a medical practitioner.
Only the patient can request VAD
Only the patient can request VAD. No one can request VAD on someone’s behalf. Carers, family, and friends can ask about VAD and ask for information but cannot make a request for VAD on someone’s behalf. Families and caregivers can also suffer greatly because of providing care and support for many years. If someone other than the patient asks for information about VAD on the patient’s behalf the health practitioner should explain the following:
where to locate independent VAD information
that they cannot request access to VAD on another person's behalf
that health and medical practitioners need to talk to the patient directly before having any conversation with another person about access to VAD. The patient seeking VAD must initiate the discussion.
The patient is not legally obliged to inform anyone they are seeking access to VAD and may prefer to keep this information from providers and family and friends. In this case, it may be important to explore the reasons why the patient seeking VAD might not want to disclose this to family. While a patient exploring VAD is not obligated to tell family, friends or the healthcare professionals caring for them, patients should be encouraged to include family and friends in their end-of-life discussions.
How to respond to a patient requesting VAD
VAD is not an alternative to end-of-life care. It is an additional choice at the end of a patient’s life and does not stop any other care or treatment being received. It is important to maintain continuity of care for the patient accessing VAD, and uphold their right to receive safe, high-quality end-of-life care. This care can be provided by:
Clarifying—Listening to patients and empathising with them.
Acknowledging—Respecting the patient’s beliefs, values and choices about their end-of-life care.
Responding (within your role)—Supporting patients to make informed decisions about their end-of-life care. Supporting patients to access the care they need. Ensuring you are providing the same standard of care to all patients.
Escalating—Referring to specialist palliative care services when there are more complex and persistent needs.
A practitioner’s own own attitudes and personal values may affect their ability to have open and supportive conversations with patients, particularly if a patient is accessing VAD.
When a patient dies
When a patient on the VAD pathway dies in hospital treat this patient’s after death care as any other patient would be treated, i.e., with compassion and respect, according to the hospital’s policy and procedures. If a patient on the VAD pathway has died prior to taking the VAD medication, there will be location-specific procedures around returning unused medication.
As with any death, when a patient dies using VAD, the experience may be highly emotional and confronting for the patient’s family and caregivers. Healthcare professionals should ensure that support is provided to bereaved family members before and after death, including:
information on what to expect when someone is dying
explanation around what happens to a body at and after death
acknowledgement of the death once it takes place
advice on self-care strategies
normalisation of expected grief symptoms
referral to resources and services to assist the person through bereavement.
From a legal perspective, there are no prohibitions against organ donation after VAD in Australia, and it may be clinically feasible for a patient accessing VAD to participate in ‘organ donation after circulatory death’ (referred to as DCD). Many VAD patients seek to explore organ donation as a way of finding meaning in their situation or have something good come out of their illness. However, accessing VAD and organ donation can be complex logistically, ethically and emotionally. It is important that even with a plan for organ donation, a patient is never pressured or coerced into using VAD. While not all patients who are eligible for VAD will also be suitable for organ donation, those who do meet the criteria for both should be facilitated to donate their organs after VAD.
Family / Friend grief after VAD
Russel (2024) suggests that grief after assisted dying is characterised by a multitude of seemingly dual experiences, including:
Preparedness - the sense of comfort and reassurance that a loved one died in a way which was aligned with their values and involved rituals and processes which were meaningful to them.
Ambivalence, Worry and Hidden Experiences - at times, experiences of anxiety and ambivalence for family members regarding the process, guilt at participation and lack of support seeking.
Stigma and Secrecy - particularly within some communities, stigma was significant and created social isolation. Experiences with health professionals could also create or maintain this stigma.
For health practitioners, simply being aware of these potential responses can assist in providing psycho-education and normalisation for those families where VAD is involved.
In addition, where possible health practitioners can create opportunities for families to access:
comprehensive psychosocial support prior to the bereavement
referrals to appropriate grief and loss services in the community afterwards.
Health practitioners should also, where necessary, seek VAD education and support to explore their own responses to VAD, all of which an create better experiences for families.
Conscientious objectors
Hospital wards are complex places and at any time are likely to have a mix of staff at very different places in their understanding, awareness or comfort with VAD. An employee can choose to participate in Voluntary Assisted Dying discussions, or they may make a conscientious objection to any or all parts of the VAD process. Conscious objection occurs when health professionals exempt themselves from providing or participating in the VAD process. A conscientious objection to VAD can be made on the grounds of religious, moral, or ethical beliefs or for some other reason.
It is important health practitioners consider the level of involvement they are prepared to have with a patient who requests information about, or access to, VAD. Health and medical practitioners can continue to provide care to their patient, unrelated to VAD, if they are comfortable in doing so and wish to continue this care.
Practitioners have the right to refuse participation but should not obstruct the patient from making autonomous end-of-life choices. They may exercise their right to refuse:
to provide information about VAD.
to participate in the request and assessment process.
to supply, prescribe or administer a VAD medication.
to be present at the time of administration of a VAD medication.
to dispense a prescription for a VAD medication.
However, the therapeutic relationship between a patient and the patient's health practitioner should, wherever possible, be supported and maintained.
Each Australian state has their own guidelines around healthcare professional rights and obligations when it comes to conscientious objection of VAD. For example New South Wales healthcare workers who have a conscientious objection to voluntary assisted dying have the right to refuse to:
participate in the request and assessment process
prescribe, supply, or administer a voluntary assisted dying substance, and/or
be present at the time of the administration of a voluntary assisted dying substance.
However, they should understand their professional obligations, including under codes of conduct and codes of ethics set by National Health Practitioner Boards, and any legal obligations legislation, including under privacy legislation, and should not obstruct the patient's voluntary assisted dying process or access to information. For example, a patient should not be denied access to their personal health information (such as medical records containing or advising on the patient's diagnosis and prognosis details) merely because this information is to be used for the purposes of a voluntary assisted dying application.
It is against the law for a treating medical practitioner to withdraw other services the practitioner would usually provide to a patient or the patient's family because of the patient's request for access to voluntary assisted dying. If this occurs, there should be prompt attention to local problem solving, and escalation according to local policies.
If a health practitioner is a conscientious objector and receives a request for VAD from a patient the practitioner should explain that he or she will advise his/her supervisor that the patient would like to discuss VAD and ask the patient if there is anything that can be done right now to make the patient feel more comfortable. It is the practitioner’s responsibility to refer the patient another team member who can assist her with the VAD request. The practitioner should ensure that the patient is comfortable and receiving the best possible care, regardless of her VAD request.
A practitioner’s responsibility within an organisation that objects to VAD
Objections to VAD may be made by a range of different institutions, including hospitals, residential aged care facilities and other long-term care facilities, and hospices or other short-term care facilities. Institutional objection is where an ‘entity refuses to provide or facilitate a lawful health service based on its values’. Institutional objections are common in faith-based institutions. Institutions may object to participating in VAD on three levels:
Providing information or referring individuals to facilitate VAD.
Eligibility assessments
VAD administration
Each hospital will have specific policies and procedures related to VAD; it is important to be aware of one’s workplace expectations around VAD.
The healthcare team
Respectful and professional behaviour must be displayed towards colleagues and co-workers, regardless of their views on VAD. Healthcare professionals should:
be supported to work within their own professional or personal ethical values, whilst continuing to provide safe, high quality, and compassionate care
be treated with mutual understanding and respect, through open communication
be able to exercise their right to conscientiously object or participate in any aspect of VAD
advocate for system measures to facilitate the provision of information about, or access to VAD
have their privacy and confidentiality respected and maintained.
At the organisational level, policies and procedures can put in place to ensure that staff wellbeing is prioritised. To facilitate self-care, healthcare professionals should:
be supported when involvement with any aspect of VAD causes emotional or professional distress
be informed about and have access to an Employee Assistance Program (EAP)
be educated about the signs of fatigue, stress, and burnout, and how to recognise this in themselves and their colleagues
have access to prompt confidential supportive services (e.g. via psychologists or social workers), relevant to individual need, role, and scope of practice, regardless of whether they choose to conscientiously object to VAD, or work in an organisation that provides access to VAD.
Summary
There are strict eligibility criteria to access VAD.
VAD is not an alternative to palliative care services.
Only the patient can request VAD. No one can request VAD on someone’s behalf.
There are state based variations in Australian VAD law.
Each hospital will have specific policies and procedures related to VAD; it is important that practitioners are aware of their workplaces expectations.
A health professional is protected if they are a conscientious objector to VAD. They will not be compelled to participate in the process. However, they cannot impede or obstruct access to the VAD process.
Health practitioners should care for patients accessing VAD in line with their professional code of conduct and duty of care.
Statewide VAD Care Navigator services offer advice and support for patients, families and health professionals.
Social work role in VAD
The Australian Association of Social Workers (AASW, 2024) suggests the social work role in VAD is one of offering support: “Voluntary assisted dying (VAD) is the assistance provided by a health practitioner to a person with a terminal disease, illness, or medical condition to end their life. It includes:
self-administration, where the person takes the VAD medication themselves, and
practitioner administration, where the person is given the medication by a health practitioner.
Voluntary’ means it is the person’s voluntary choice. The person must have decision-making capacity to decide to access VAD. As social workers cannot legally initiate discussions about VAD with a client, their role would be in palliative care or generic counselling, where they are supporting the client to work through issues of grief and loss.” As regulations around VAD vary from State to State in Australia the AASW suggests https://www.eldac.com.au/Toolkits/End-of-Life-Law/Voluntary-Assisted-Dying/Resources be consulted for these regulations. This site also has a toolkit providing information for health professionals that will assist in supporting palliative care and advance care planning for aged care clients (https://www.eldac.com.au/Toolkits/End-of-Life-Law).
Guiding Principles
Palliative Care Australia (2022) offers a position statement and guiding principles around VAD that emphasise the need for palliative care to exist beside VAD. It clarifies that withdrawing or refusing life sustaining treatment when aligned with a person’s preferences (e.g. a ‘do not resuscitate’ request) is not a VAD request.
Position Statement (extracts)
Every Australian living with a life limiting illness should always have equitable access to quality needs-based palliative care at any point in their illness journey, with timely referral to specialist palliative care if required.
Palliative care is person and family-centred care with the goals of ensuring patient psychological safety and optimising quality of life. Palliative care helps people live their life as fully and comfortably as possible when living with a life-limiting illness.
When aligned with a person’s preferences, withdrawing or refusing life sustaining treatment (including withholding artificial hydration) or providing strong medication(s) to relieve suffering, does not constitute VAD.
All people providing palliative care should be supported to ensure people with life-limiting illness in their care receive safe, compassionate, competent care, regardless of whether they seek information about, or referral to, services that may provide VAD.
Guiding Principles
1. People living with a life-limiting illness are supported and respected as they explore their options and make end-of-life care decisions which may include voluntary assisted dying.
Health professionals, care workers and volunteers should:
Support people living with a life-limiting illness to make informed and autonomous decisions about their care.
Prioritise the opportunity to discuss needs, hopes and preferences with individuals that is consistent with personal values, experiences, culture, beliefs and goals of the person with a life-limiting illness.
Be familiar with the broader aspects of palliative care provision, including physical, emotional, spiritual and social care that may support a person exploring voluntary assisted dying.
Recognise that a person living with a life-limiting illness may have specific family members or friends they want to be involved in and informed about their end-of-life decisions. Likewise, a person with a life-limiting illness may have specific family members or friends they wish to exclude from end-of-life decision making, treatment and care.
2. People exploring voluntary assisted dying are not abandoned
A person living with a life-limiting illness, their family and carers should not be made to feel judged, abandoned, or scared that care will be adversely affected if they want to explore VAD. Safe, compassionate, competent care should be the norm, regardless of whether they seek information about, or referral to services that may provide, VAD.
3. Respectful and professional behaviour is displayed towards colleagues and co-workers regardless of their views on voluntary assisted dying
4. Effective communication is an important part of quality care
Spending time to listen and talk is essential to explore a person’s beliefs, values, concerns, understanding of, and preferences for care.
5. Ongoing development of knowledge, skill and confidence is required to provide competent and safe care to people living with a life–limiting illness
The evidence base, legal requirements and policy frameworks related to VAD are evolving rapidly in Australia and internationally.
6. Self-care practice is a shared responsibility between individuals, colleagues and organisations
Providing person and family-centred care at the end of an individual’s life is rewarding and satisfying much of the time, however it can also be overwhelming and difficult. Training and guidance in managing emotionally challenging situations must be backed up by organisational policies and processes that identify and support those at risk of moral distress and burnout.
Educating social workers in assisted dying practice
Bravo et al. (2023) suggest educating social workers in assisted dying practice should revolve around how best to assist clients with decision making and then to provide emotional support when the decision has been made to seek an assisted death. Social workers require guidance, perhaps in the form of practical steps to follow, on how to balance the principles of self-determination and autonomy with the need to protect vulnerable persons.
Other topics to address in educational materials or training sessions designed specifically for social workers include:
strategies to uncover the reasons behind the wish to die (e.g., quality of life considerations, social isolation, depression),
the extent to which alternative means to relieve suffering should be discussed (e.g., continuous deep sedation),
assessing decision-making capacity to request MAID (medical assistance in dying),
determining whether the person’s judgment is compromised by mental illness, and the role that emotions such as lack of hope, frustrations, and anger play in the decision to seek MAID,
assisting social workers in dealing appropriately with values that they may not share, given the increasingly multicultural nature of societies (Bravo et al., 2023).
Suggestions for Practice
Recent Literature around VAD / MAiD / MAID
As a result of greater access to assistance in dying, social workers practicing in health care increasingly encounter clients who wish to die. With self-determination as the primary ethical principle guiding their profession, and given their knowledge of family dynamics and communication skills, social workers are uniquely qualified to interact with persons considering medical assistance in dying (MAID or MAiD) to end their suffering. Social workers are called upon to provide a variety of tasks in the context of assisted dying. Most tasks deal with empowering clients to make end-of-life decisions for themselves and supporting loved ones of those who opt for MAID. For example, social workers may:
help clients distinguish between care options, and make decisions based on their own values,
investigate the impact of personal and contextual factors on motivations for a hastened death, including quality-of-life considerations and how the desire relates to their suffering,
assess capacity for informed consent to MAID,
advocate for clients’ rights,
assist family members in understanding and supporting their loved one’s choice, and
provide emotional support to families and coworkers before and after the patient has passed away.
The social work role can begin before and extending beyond the provision of MAID. Effectively performing these tasks requires adequate professional training on end-of-life issues, and on MAID specifically (Bravo et al., 2023).
As part of their study Bravo et al. (2023) surveyed 141 social workers in Canada who had been involved in MAID. They found assistance with decision making and emotional support to clients and families were the most common tasks, reported by 73.8% to 87.2% of the respondents. These were followed by providing procedural support to the person (69.5%), informing about end-of-life care (63.8%), and assessing social functioning (59.6%). Most social workers (85.5%) rated the emotional charge generated by their most recent MAID case as medium or high; 62.4% felt the need for a break to process their emotions; and 75.9% felt supported by their work environment. Perceived competence was relatively high; competence was rated lower by social workers who had not received any training in palliative care or on MAID.
Antifaeff (2019) describes the experiences and social work interventions around a 55-year-old woman who had been living with advanced cancer for six years. She had a family support network and wide circle of friends. The social worker’s role in this person’s choice of MAiD involved:
Biopsychosocial assessment A biopsychosocial assessment (conducted early in the MAiD process) explores the context (physical, emotional, social, economic, spiritual) of the MAiD request. While not a requirement for MAiD eligibility, the BPSS is beneficial for identification of any unmet needs that may contribute to a client’s decision to pursue MAiD (that is, a lack of supportive resources, fear of poor symptom management, dread of saying goodbye to loved ones and friends over weeks) while also screening for coercive factors relating to social or financial circumstances. Conducting the BPSS early in the process allows ample time to explore identified issues and offer interventions to address unmet needs. It enables any religious or spiritual community favoured by the individual to become involved if required. A BPSS can establish rapport that enables the person to call on the social worker when necessary to help process thoughts and emotions and gain clarity.
Family work Exploring the impact of the decision to pursue an assisted death on the client’s family and community is an integral part of the social work assessment process as it considers the family system, family roles, the impact of the illness, end-of-life decision making processes, and family beliefs and values. Disagreements about the decision to pursue assisted dying have been found to increase complicated bereavement. The role for social work is essential when these conflicts arise, as practitioners bring therapeutic communication skills that support a dialogue between clients and family members.
Period of reflection – panning for a good death Social workers can seek direction from the person about how he or she envisioned death: Who should be in attendance? Specific music? Dress? Other personal requests? Wake – yes or no, before or after death? The ability to voice these preferences allows the person to further control the circumstances of death. An important part of the social worker role can be to advocate for, and facilitate, an end-of-life environment that met the client’s needs.
Providing support on the day of the death Feeling adequately prepared for a loved one’s death has been found to positively affect bereavement outcomes for families who experience MAiD. On the day of the death, social workers have an important role in providing psychosocial support to clients and their loved ones to ensure that their needs are met on this difficult day. This could include a family meeting to provide loved ones the opportunity to share emotions, ask questions, and raise concerns. Preparedness involves providing family with reliable information and demonstrating empathetic behaviors, such as acknowledging caregivers’ emotions, listening, providing emotional support, and eliciting questions. Social workers can use family meetings to explore the perception of stigma regarding the client’s choice of MAiD, review strategies on how to manage it, and potentially increase feelings of solidarity within the family system.
Antifaeff (2019) points out that the above case is an example of a relatively ideal medically assisted death. Other cases of MAiD may have complications such as values and religious beliefs clashing with the choice for an assisted death, dysfunctional family systems, absent or estranged families, or a client’s preference to hide her or his choice of an assisted death from loved ones. Quality psychosocial care leading up to an assisted death should allow for ample opportunities for the client to discuss difficult relationships, family dynamics, and regrets that may constitute “unfinished business.” Social workers can help clients decide if and how they want to act, and potentially facilitate communication. Whatever the complexity, research has found that terminally ill clients want to discuss unresolved psychosocial matters with their professional caretakers as they face their end of life.
References
AASW: Australian Association of Social Workers. (2024). Voluntary assisted dying. https://my.aasw.asn.au/s/article/Voluntary-assisted-dying
Antifaeff, K. (2019). Social work practice with ' in Dying: A case study. Health and Social Work, 44(3), 185-192. https://doi.org/10.1093/hsw/hlz002
Bravo, G., Colli, N.D., Dumont, I., Bouthillier, M., Rochette, M. & Trottier, L. (2023). Social workers’ experiences with medical assistance in dying: Survey findings from Quebec, Canada. Social Work in Health Care, 62(5), 193-205. https://doi.org/10.1080/00981389.2023.2210624
End-of-Life Essentials. (2024). Voluntary Assisted Dying in Acute Hospitals. https://education.endoflifeessentials.com.au/course/about/vad
Palliative Care Australia. (2022, October 31). Palliative care and voluntary assisted dying position statement 2022. https://palliativecare.org.au/statement/palliative-care-and-voluntary-assisted-dying-position-statement-2022/
Russell, H. (2024, November 14). How understanding the pathways of grief after VAD can help health professionals provide better care for families. End-of-life Essentials. https://www.endoflifeessentials.com.au/News-and-Resources/Blog/ArtMID/21544/ArticleID/5394/How-understanding-the-pathways-of-grief-after-VAD-can-help-health-professionals-provide-better-care-for-families
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