Almost half of social workers believe they should have a role in any future assisted dying process, though others fear the sector would struggle to take on such a role, a poll has found.

This follows the Terminally Ill Adults (End of Life) Bill passing its second reading in the House of Commons in November 2024.

Under the legislation, a terminally ill person with no more than six months to live could choose to receive assistance to die, so long as they had the mental capacity to make the decision.

To be approved, they would need to be assessed by two separate doctors, and a High Court judge would need to confirm that the legislation’s requirements were met.

However, in light of concerns about people being or feeling coerced into an assisted death, the Association of Palliative Care Social Workers (APCSW) has proposed the establishment of a social work role to safeguard those going through the process.

But do social workers agree?

A Community Care poll with 700 votes found that almost half of practitioners (46%) believed they should be involved in future assisted dying processes. However, over one-third (37%) expressed concerns about the sector’s capacity to accommodate the additional work.

Proposed social work role

The approved palliative care professional position proposed by the APCSW would have the following functions:

• Ensuring that the person had the mental capacity to make this decision.
• Having in-depth discussions with the person, those close to them, the multidisciplinary team responsible for their care and any paid carers.
• Ensuring all reasonable care and resources had been provided and that no other forms of care or treatment could be offered which would alter the person’s choice of an assisted death.
• Making an independent assessment of the individual in the context of their wishes, values and relationships, and ensuring that they were making a fully informed decision without undue influence by others or by concerns about the pressure on others of caring for them.
• Taking timely and sensitive action to safeguard anyone who was subject to neglect, abuse or coercion.

What do you think about the proposed safeguarding role?

Celebrate those who’ve inspired you

Photo by Daniel Laflor/peopleimages.com/ AdobeStock

We’re expanding our My Brilliant Colleague series to include anyone who has inspired you in your career – whether current or former colleagues, managers, students, lecturers, mentors or prominent past or present sector figures whom you have admired from afar.

Nominate your colleague or social work inspiration by filling in our nominations form with a letter or a few paragraphs (100-250 words) explaining how and why the person has inspired you.

If you have any questions, email our community journalist, Anastasia Koutsounia, at anastasia.koutsounia@markallengroup.com

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Legislation to permit assisted dying has cleared its first parliamentary hurdle after MPs voted in favour of it today.

The Terminally Ill Adults (End of Life) Bill passed its second reading in the House of Commons by 330 votes to 275.

Most Labour and Liberal Democrat MPs voted in favour, with the majority of Conservatives, and a sizeable minority from the governing party, voting against.

The bill will now be considered in detail by a committee of MPs, where it may be amended, before being reconsidered by the whole House of Commons at the report stage and third reading, where the whole legislation will be voted on again.

It is not certain that MPs will back the bill again at this point, given the narrowness of today’s vote and the contentiousness of the legislation.

Should they do so, the House of Lords would be highly likely to approve it, meaning it would become law.

Process for an assisted death

Under the legislation, a terminally ill person assessed as having no more than six months to live would be able to choose to receive assistance to die so long as they had the mental capacity to make the decision.

Before going ahead, they would have to be assessed independently by two doctors and a High Court judge would need to confirm that the requirements of the legislation were met.

Social workers are broadly in favour of the bill, according to a Community Care poll.

However, significant concerns have been raised by critics, including health and social care secretary Wes Streeting, that people would be, or feel, coerced into an assisted death or would choose this option because of the inadequacy of palliative care services.

To address such concerns, the Association of Palliative Care Social Workers (APCSW) – which is neutral on the bill – has proposed the establishment of a social work role to act as a safeguard for those potentially going through an assisted death.

Proposed social work role

The approved palliative care professional position proposed by the APCSW would have the following functions:

• Ensuring that the person had the mental capacity to make this decision.
• Having in-depth discussions with the person, those close to them, the multidisciplinary team responsible for their care and any paid carers.
• Ensuring all reasonable care and resources had been provided and that no other forms of care or treatment could be offered which would alter the person’s choice of an assisted death.
• Making an independent assessment of the individual in the context of their wishes, values and relationships, and ensuring that they were making a fully informed decision without undue influence by others or by concerns about the pressure on others of caring for them.
• Taking timely and sensitive action to safeguard anyone who was subject to neglect, abuse or coercion.

The committee of MPs established to scrutinise the bill will consider evidence, including by bodies such as the APCSW, which may lead to an amendment to the legislation being drawn up to introduce such a role.

Following today’s vote, think-tank the Nuffield Trust said critical questions remained around how the legislation would be resourced, in the face of the funding challenges facing palliative and social care.

Funding concerns

Chief executive Thea Stein said: “In particular, it is still unclear whether or not assisted dying would be fully publicly funded. If it is, it will sit alongside services like social care and hospice care which are not.

“Both of these services are financially on the brink and MPs will need to understand how current threadbare provision will interact with this new service, what implications this may have for people paying for social care, and how to fund assisted dying from a health budget that is already overstretched.

“If assisted dying is not publicly funded then it will be difficult for the bill to achieve its aim of improving choice for all patients. These are crucial questions to address in the next stage.”

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Most social workers support the legalisation of assisted dying, a Community Care poll has found.

The Terminally Ill Adults (End of Life) Bill, which was approved in principle by the House of Commons this week, would enable adults to receive assistance to end their lives.

Social workers back assisted dying

A Community Care poll, which received almost 1,300 votes, found that most respondents (64%) would support the bill, with 36% against. 

Maharg, who works at a continuing healthcare service, said older people and cancer patients they have worked with have broached this subject, with four to six people having expressed interest in receiving support to die.

“The guidelines are clear, people have to fulfil the criteria and only they can promote their choice,” they added.

“So I agree with this being an option for those who want it.”

Court delays could hinder process

Stuart said: “We are a society predicated on the principle of autonomous choice, which is enshrined in medical ethics. The law supports these principles.

“To deny someone the choice when death is a greater attraction than life is a denial of these principles.”

However, patients would need to seek court approval to be eligible for assisted dying, which might mean that it would not be granted at an appropriate timeframe, said Carol.

“With judges involved and court delays, I can’t see anybody ever being granted this in an appropriate timeframe to ‘self administer’ anything,” she added.

“I find it fascinating that it is okay for health professionals to administer the four core drugs [morphine, midazolam, haloperidol, and an antimuscarinic] which hasten death when they consider it the ‘right time’, but individuals can’t choose themselves.”

‘We need to first expand palliative care to all’

Laura Morris criticised the bill, however, calling it “utterly irresponsible”.

“As social workers, we must first address the unmet needs of any individual who has a life-limiting condition by expanding palliative care to all,” she said.

“First it starts with the wealthy who can afford this legal process but then what? It’s a slippery slope. Why is there no palliative care for all? This country invented palliative care social work.”

What are your thoughts on assisted dying?

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Specialist social workers should be involved in safeguarding people going through an assisted death should legislation on the issue become law.

That was the message from the Association of Palliative Care Social Workers (APCSW) in a position statement on the issue, which was published before the second reading of the Terminally Ill (Adults) End of Life Bill in the House of Commons on 29 November 2024.

MPs voted to back the bill in principle, meaning it will now be considered in detail by a committee of membersbefore returning to the full House of Commons for a further vote.

The APCSW did not set out a position on whether the bill should become law or on the legalisation of assisted dying more broadly. Instead, it made a series of recommendations on what should happen were the bill to be approved.

These included amending the legislation to create the position of approved palliative care professional, to assess and support people seeking an assisted death, with the role initially being carried out by specialist social workers.

What assisted dying bill involves

Under Labour MP Kim Leadbeater’s private member’s bill, adults who are terminally ill and assessed as having no more than six months to live would be able to lawfully be given assistance to end their lives.

They would need to be assessed by two doctors, who would need to confirm that they met the eligibility criteria, including that they had the mental capacity to make the decision.

A High Court judge would then need to declare that the legislation’s requirements had been met, and then the person would have to make a further declaration that they wanted assistance to end their life before this could go ahead.

The bill has proved controversial, with critics, including health and social care secretary Wes Streeting, raising concerns about people feeling coerced into making the decision and not having a free choice because of the alleged inadequacy of palliative care.

Proposed specialist role

The proposed approved palliative care professional role appears designed to tackle some of these criticisms.

The association said it would have the following functions:

• Ensuring that the person had the mental capacity to make this decision.
• Having in-depth discussions with the person, those close to them, the multidisciplinary team responsible for their care and any paid carers.
• Ensuring all reasonable care and resources had been provided and that no other forms of care or treatment could be offered which would alter the person’s choice of an assisted death.
• Making an independent assessment of the individual in the context of their wishes, values and relationships, and ensuring that they were making a fully informed decision without undue influence by others or as a result of concerns about the pressure on others of caring for them.
• Taking timely and sensitive action to safeguard anyone who was subject to neglect, abuse or coercion.

Palliative social work skills

The association said the functions were particularly suited to the skills of social workers, particularly the specialist palliative care practitioners that it represents.

These included carrying out holistic assessments of people’s physical, social, psychological and spiritual needs, assessing mental capacity, supporting people to exercise choice and autonomy in challenging circumstances and safeguarding.

“We are trained in assessing and managing risk, including the use of statutory powers and legal proceedings where no other options are adequate,” it said.

For its recommendation to be implemented, the bill would need to be voted through on Friday and then be amended to include the approved practitioner role at a subsequent stage, most likely the committee stage that follows the second reading.

Ensuring adequate skills

The APCSW said the role, were it to be implemented, should initially be developed with and held by palliative care social workers before being rolled out to other social workers and relevant practitioners.

However, it said having assisted dying legislation on the statute books would require adequate workforce skills, knowledge and resilience across health and social care more generally.

It said palliative care should be a required element on all qualifying courses for doctors, nurses, allied health professionals and social workers, but also stressed that staff needed adequate psychological support were the bill to become law.

Workforce ‘already stretched to capacity’

“The issue is sensitive, personal and emotive and professionals involved will require relevant training and high quality, structured supervision and opportunity for reflective practice.

“In a workforce that is already stretched to capacity and experiencing unprecedented burn out, the introduction of assisted dying would need careful preparation.”

Any assisted dying policy would also need to respect the views of practitioners who were ethically opposed to it without obstructing those who chose an assisted death.

Concerns over state of palliative care

In an echo of Streeting’s concerns, the APCSW warned that the current state of palliative care risked leading people to choose an assisted death as “the only way to escape from unbearable suffering”.

It said that the majority of palliative care was delivered by charitable hospices, whose already limited funding from the NHS and councils had declined in recent years as donations had also dried up, leading to cuts and redundancies in some areas.

Introducing an assisted dying law in this context could “lead to a vicious and tragic downward spiral by reducing the number of people seeking or being referred to palliative care services”, cutting investment still further.

The association stressed that the legalisation of assisted dying would have to be accompanied by “sufficient funding to provide equitable access to high quality palliative care for everyone”.

Service improvements should be informed by a population-wide assessment of the need for palliative care, it added.

By Tim Spencer-Lane

On 11 November 2024, the Terminally Ill Adults (End of Life) Bill was published. This bill makes provision for a person who is terminally ill and meets the eligibility criteria to choose to request and lawfully be provided with assistance to end their own life.

This will be of particular interest for social workers who work with people who have a terminal illness or practise in specialist palliative care settings.

This is a private member’s bill, introduced by the Labour MP Kim Leadbetter. The government has confirmed it will “remain neutral on the passage of the bill and on the matter of assisted dying”. MPs, including government ministers, will therefore have a free vote on whether to support the bill at its second reading, which involves a debate on its principles.

The House of Commons has not voted on the issue since September 2015.

The legal framework for assisted dying

The Suicide Act 1961 makes it an offence for a person to do an act capable of encouraging or assisting the suicide or attempted suicide of another person. A person guilty of this offence is liable to imprisonment for a term of up to 14 years.

The European Court of Human Rights recognises that states have a “wide margin of appreciation” when it comes to the lawfulness of assisted dying. For example, since 1942, assisted suicide has been lawful in Switzerland, which is also a signatory to the European Convention on Human Rights (ECHR).

But to be compatible with the ECHR, assisted dying must be accompanied by suitable and sufficient safeguards to prevent abuse and ensure that the person’s decision to end their life fully reflects their free will.

Who would be eligible for assisted dying?

Under the bill, there are four criteria that must be met before a terminally ill person can be assisted to end their own life. The person must:

• have capacity “to make a decision to end their own life” (with capacity to be determined in accordance with the Mental Capacity Act 2005);
• be aged 18 or over;
• be ordinarily resident in England and Wales, and have been ordinarily resident there for at least 12 months, and
• be registered as a patient with a GP practice in England or Wales.

A person is “terminally ill” if they have an inevitably progressive illness, disease or medical condition that cannot be reversed by treatment. The person must also reasonably be expected to die within six months.

A person must not be regarded as terminally ill merely by reason of them having a mental disorder, under the Mental Health Act 1983, or a disability, within the meaning of the Equality Act 2010.

The bill also requires that steps to be taken to ensure that the person has a clear, settled and informed wish to end their own life. They must also have made the decision voluntarily and have not been coerced or pressured by any other person in making that decision.

What will the process be?

The process of seeking assisted dying consists of three stages:

• The person makes a “first declaration” (and two medical statements are provided).
• The approval of the court.
• The person makes a “second declaration” (and a medical statement is provided).

The first declaration

At the first stage, the person must make a declaration confirming a number of specified matters, including that they are “eligible” for assisted dying and understand they can cancel the declaration at any time.

This is known as the “first declaration” and must be signed by the person themselves and witnessed by the “co-ordinating doctor” and another independent person. The “co-ordinating doctor” is a registered medical practitioner who meets certain requirements and is willing to carry out the functions under the bill in relation to the person.

The co-ordinating doctor is also required to assess the person and confirm a number of matters, including that the person has the requisite capacity and has not been subject to coercion or third-party pressure.

They must also refer the person for a second assessment by another registered medical practitioner (referred to in the bill as “the independent doctor”). There is a period of at least seven days (“the first period of reflection”) between the first and second assessments.

Approval of the court

At the second stage (ie once the person has made a first declaration and the two medical statements have been made), the person may apply to the High Court for approval of assisted dying. This would require the court to make a declaration that the requirements of the bill have been met in relation to the first declaration.

If the High Court refuses to make the declaration, the person can appeal to the Court of the Appeal. The Court of Appeal can confirm the decision of the High Court or make the declaration. There is no appeal against a decision of the High Court to make the declaration.

The second declaration

At the third stage, if the person still wishes to be provided with assistance to end their own life, they must then make a further declaration (referred to as “the second declaration”).

There must be a period of at least 14 days (“the second period for reflection”) between the court declaration and the person making the second declaration (or if the person is expected to die within one month of the court declaration, a period of at least 48 hours).

The second declaration must be witnessed by the co-ordinating doctor and by an independent witness. The co-ordinating doctor must sign a statement confirming certain matters and that must be witnessed by the same independent witness as witnessed the second declaration.

How would assisted dying be provided?

The bill sets out that in order to administer assisted dying, an “approved substance” must be provided directly, and in person, by the co-ordinating doctor. Approved substances are not defined in the bill but will be specified in regulations.

The co-ordinating doctor may prepare that substance for self-administration by that person, prepare a medical device that will enable that person to self-administer the substance, and assist that person to ingest or otherwise self-administer the substance.

The bill sets out that the decision to self-administer the approved substance and the final act of doing so must be taken by the person themselves, not by the co-ordinating doctor.

The co-ordinating doctor may authorise another named registered medical practitioner to exercise the co-ordinating doctor’s functions in connection with the provision of assistance to a person.

What about healthcare professionals who don’t want to offer assisted dying?

The bill sets out that no doctor is under a duty to raise the subject of the provision of assistance under the bill with a patient. Where a patient indicates to a doctor that they wish to seek assistance to end their own life in accordance with the bill, the doctor may (but is not required to) discuss the matter with the patient.

Clause 23 explains that no registered medical practitioner or other health professional is required to participate in the provision of assistance under the bill. Also, an employee cannot be discriminated against because they choose not to participate in the provision of assistance under the bill or because they choose not to participate in the provision of that assistance.

What are the protections against legal liability for providing assistance?

The bill sets out that a person is not guilty of an offence by virtue of providing assistance in accordance with the bill.

The Suicide Act 1961 is, accordingly, amended to ensure that the provision of assistance to a person in accordance with the bill is not an act which constitutes an offence under section 2 of that act (criminal liability for complicity in another person’s suicide).

The offence under section 2 of the Suicide Act 1961 will continue to operate for other cases where assistance is provided. But the amendment to that act also provides a defence to a charge under section 2 of the Suicide Act 1961 where the person proves that they:

• reasonably believed they were acting in accordance with the bill, and
• took all reasonable precautions and exercised all due diligence to avoid the commission of the offence.

The bill also sets out that providing assistance to a person to end their own life in accordance with the bill does not give rise to any civil liability.

What new criminal offences are created?

The bill creates a number of new criminal offences, including the following:

• where dishonesty, coercion or pressure is used to induce a person to make (or not to cancel) a first or second declaration, or self-administer an approved substance;
• to make or knowingly use a false first or second declaration, or willingly destroy one;
• to knowingly or recklessly provide a medical or other professional opinion which is false or misleading;
• to wilfully ignore or otherwise conceal knowledge of a cancellation of a first or second declaration.

Other matters

The bill provides that the duty to investigate a death under the Coroners and Justice Act 2009 does not arise just because the person died as a consequence of the provision of assistance in accordance with the bill.

The secretary of state is required to issue codes of practice in relation to the bill, such as on the assessment of whether a person has a clear and settled intention to end their own life and the assistance which a person may be given to ingest or self-administer an approved substance.

The chief medical officers for England and Wales are required to, separately, provide guidance relating to the operation of the bill. In particular, they must have regard to the need to provide practical and accessible information, advice and guidance to persons considering requesting assistance under the bill, their families, and the general public.

The secretary of state is also given powers to secure that arrangements are in place for assistance to be provided in accordance with the bill, including arrangements for the funding of any provision made. This would enable the secretary of state to provide for services to be provided through the health service or by a separate service.

The secretary of state is also required to review the operation of the bill. The review must take place at least five, but not more than six, years after the passing of the bill. The report of the review must be laid before Parliament.

Tim Spencer-Lane is a lawyer specialising in adult social care, mental capacity and mental health and legal editor of Community Care Inform. 

To some, at first glance, working in a hospice might seem a gloomy place to practise social work.

However, Wendy Ashton, joint education lead at the Association of Palliative Care Social Workers (APCSW), believes social work in palliative care is about celebrating life rather than focusing on death.

“This is proper social work, this is what I trained to do. I don’t mean that to be demeaning of any other social work but it is totally different,” she says.

Palliative care, usually given in a hospice, hospital or at home, is offered to those who are terminally ill, in order to improve their quality of life.

Ashton, who won the Making a Difference gong at the Social Worker of the Year Awards in 2018, has worked in a hospice for 13 years. She manages the social work, counselling and spiritual care teams as well as doing frontline work.

The Social Worker of the Year awards 2018

People come to the hospice after receiving a palliative care diagnosis. This could be due to cancer, respiratory or heart failure or any other terminal illness. They can then choose to stay at a hospice (dependent on waiting lists), either for a short duration before going home, or for the remaining period of their life.

Hospices are partially funded by the NHS, with the rest coming from charitable donations. The leading hospice charity, Hospice UK, supports 200 hospices that serve over 300,000 people, both children and adults.

The social work role

Like other branches of social work, palliative care social work has many strands to it. A social worker’s role includes, but is not limited to, giving advice, carrying out assessments, discharge planning, advance care planning (for example, regarding legal matters, wills and funerals) as well as providing psychological, spiritual and emotional support.

Marie Price, also joint education lead at the APCSW, has worked in hospices for more than 30 years and would like to see more social workers explore palliative care. As a social work lecturer she helps arrange placements for students at hospices.

Marie Price

“Social workers can do social work in hospices in a way that they can’t always in statutory work. It’s kind of good relationship-based social work, which is a good start,” explains Price.

Another aspect to palliative care social work is offering bereavement support to partners and families of the deceased. This is especially significant for parents who have lost children.

“Some [parents] feel that they ought to be able to cope, some people are so angry that they don’t want to access support,” says Price. “Others are just very grateful just to be able to come and sit somewhere and have someone just be with them even if it isn’t to talk necessarily.

“And that’s ok. The other thing we don’t always have the opportunity to do is to have lots of conversations around these areas so we don’t know what is ‘normal’ for grieving and there is no normal.”

Working with families

Palliative care social work is not limited to hospices. Karen Heale, who works for the Young Lives vs Cancer charity, is a paediatric social worker based in a specialist treatment centre for children with brain tumours.

Once a child has a cancer diagnosis, a referral comes through to the charity. If active treatment like radiotherapy or chemotherapy is needed, the child will be referred to Heale, with the family’s permission.

“I will have met the family right from the diagnosis,” she says. “What I always say to the parents is that our work is dealing with everything except the medical intervention, because we’re not nurses. It comes under the category of psychosocial support – we’re offering emotional and practical support. For example employment support and being able to pay your bills all comes under that umbrella.”

Even though the charity offers financial support in the form of grants and allowances, there are many other things that families need support with. Often, treatment centres can be hundred of miles away from where the family live.

Heale adds: “I just look at parents going through this and I just think what I bring is actually working with them to find solutions to problems, so whether it’s employment or ‘what am I going to do with the little brothers and sisters, what am I going to do with the dog if I’m in here for a month?’

Karen Heale

“It’s all those things that you don’t necessarily think are going to be issues that end up being huge and so that’s the way that I look at it. I’m actually helping to take some of that stress away from families and give them an avenue to literally just let out everything they feel and let out their frustrations and worries.”

Even after many years of experience, Price is still learning about people’s different cultural and spiritual needs despite most hospices having guidelines for some faith groups. She has organised a whole day of training at the hospice she works with to try and understand the specific needs of different cultures.

Ashton says she has done a lot of training in her 13 years and one of the most useful is advanced communication skills because “they’re quite difficult and delicate conversations that we’re having with families at the end of life”.

Detailed knowledge of human rights and mental capacity is also important, as many patients come in with dementia or brain tumours that have affected their capacity to make certain decisions.

“You’ve got to have compassion, empathy, be good at listening, you have to be resilient with yourself, you have to be flexible – you don’t always get off on time and sometimes we work weekends,” explains Ashton. “You have to be a team player – there is no way my job is about a single person doing something, everything I do involves another team member.

“You have to be adaptable and have a positive attitude to life. A lot of people say ‘is that not a really sad job?’ It’s not, it is what it says on the tin, it’s end of life.”

Heale, who works with young people and their families, says you also need to have a “bubbly personality, because if you’re doom and gloom, parents just don’t want that”.

“You’ve got to be able to put your emotions to one side which is extremely difficult at times. It takes a certain kind of person to be able to do the job – in this job, it’s the stress of being able to manage that family and support them through any parents’ worst nightmare. You have to be prepared for anything.”

Coping with loss

It can be difficult dealing with loss on a regular basis.

“You expect a children’s cancer ward to be quite subdued but it’s not, it’s full of laughter. A lot of the time it’s a happy environment. I get my strength from the children,” says Heale.

Ashton, who is based in a hospice, says: “It’s not our trauma to cope with. It’s not our grief. I go home knowing that I have done the best job possible to make their end of life as good as possible, so I’m not sad and it isn’t trauma because they’re going to die anyway.

“Everybody has to die and if we can improve the dying process, enhance it, include the family and help them to achieve what they want to achieve at the end of life, then to me that’s not trauma. That’s a good job.”

To learn more about palliative care social work visit the APCSW website.

If you’re a social worker in an unusual setting, and would like to share your experience for an article, please email sharmeen.ziauddin@markallengroup.com.