Social workers would sit on three-person panels set up to review adults’ requests for assisted dying under a proposed amendment to the bill to legalise the practice.

Labour MP Kim Leadbeater, sponsor of the Terminally Ill Adults (End of Life) Bill, has proposed that the panels – which would also comprise a psychiatrist and a senior lawyer – should consider requests for an assisted death that had been already signed off by two doctors.

Role of panels including social workers

The panels’ role would be assess whether the statutory requirements for an assisted death had been met, including that the person:

• has an inevitably progressive illness and is expected not to live beyond a further six months;
• has capacity to make the decision to end their life;
• has a clear, settled and informed wish to end their own life;
• made the initial declaration that they wanted to end their life voluntarily and was not coerced or pressured into making it.

The panels would have to take evidence from at least one of the two doctors and may also hear from the person themselves or any other person.

Replacing court role

Under the bill as currently stands, this role would be carried out by the High Court. However, concerns have been raised about the impact this function would have on court capacity, at a time when the judicial system is already under significant pressure.

Under Leadbeater’s proposal, the social worker member would need to be a registrant on either Social Work England’s or Social Care Wales’s register.

The panels would be appointed by a Voluntary Assisted Dying Commissioner, a new role appointed by the prime minister that would be held by a senior judge. This would be provided for by another of Leadbeater’s proposed amendments to her bill.

The amendments will be discussed by the committee scrutinising the bill after Parliament returns from its current recess next week.

Argument over level of safeguards

In a committee debate last week, bill opponent Danny Kruger raised concerns that replacing the High Court with a panel would weaken provisions in the bill protecting people from being coerced into ending their lives.

In response, Leadbeater cited the evidence of the Association of Palliative Care Social Workers (APCSW) to the committee in arguing that the panels would consist of practitioners with expertise in tackling coercion.

Though neutral on the question of assisted dying, the APCSW and the British Association of Social Workers (BASW) welcomed Leadbeater’s plan.

Social workers ‘uniquely qualified’ for role

The APCSW said: “The inclusion of social workers as core members of these panels shows that Kim Leadbeater and her colleagues have taken on board our arguments that social workers are uniquely qualified and equipped to undertake the complex and sensitive tasks of assessing mental capacity and safeguarding individuals who may be subject to any form of undue influence or coercion.”

It added: “The choices that people make as they approach the end of their lives are strongly influenced by their relationships with others and by the practical circumstances of their lives. This holistic perspective is our native ground as social workers.”

BASW issued a similar message, saying: “Individuals considering assisted dying, and their families, need holistic advice and support. The multi-disciplinary panel also potentially provides the framework to resolve issues of mental capacity and adult safeguarding, both issues which sit with social workers.”

Panels ‘would need to be backed by resource and training’

However, it added that the panels would require sufficient resource to ensure they were adequately staffed, while practitioners serving on them would need appropriate training and supervision to fulfil their roles.

There is a majority in favour of assisted dying on the committee, suggesting that the amendments will be agreed.

The bill will then return to the House of Commons for further debate and a final vote. Though MPs backed the bill in principle previously, the changes proposed by Leadbeater may lead to a weakening of support.

Celebrate those who’ve inspired you

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Do you have a colleague, mentor, or social work figure you can’t help but gush about?

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

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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

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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.

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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.

Over the last decade, national carer organisations have increasingly recognised the particular nature of caring for someone as they approach the end of life, and some specific support has been created, for example, the End of Life Carers Project run by Carers Network.

This has encouraged local carer organisations to recognise carers of those approaching the end of life as being in need of specifically developed, targeted services.

Many of the challenges faced by carers are the same whatever the stage of an illness or disability, but at end of life their urgency and significance are magnified.

Communicating with carers as needs increase

Carers’ needs can change as the cared-for person’s condition progresses, and practitioners should encourage open discussion between all involved. Sometimes the needs of carers conflict with the needs of the person nearing the end of life, so practitioners will require skills in facilitating difficult conversations.

End-of-life carers may want information about their loved one’s prognosis and symptoms, and what to expect as death approaches.

Equally, they may find the only way to cope is to ignore the inevitable. This can be difficult if they are required to have discussions about advance care planning, such as resuscitation, artificial feeding or active treatment coming to an end.

This is especially pertinent if the person they care for lacks capacity to make relevant decisions for themselves or the carer has lasting power of attorney for health and welfare.

The person nearing end of life may want help to organise their will, plan their funeral or discuss arrangements for dependent children.

Again, this can work well if the carer is in the same place emotionally, but it can be painful for both if they are not. If the cared-for person and carer are parents, and the carer wants to make forward plans or prepare the children, it can be very difficult to talk to their children about what is happening if this goes against the other parent’s wishes.

Practitioners will have to think how best to communicate with the carer about matters such as options for a preferred place of care and of death. Should it be at home, in a hospice or in hospital? What are the practicalities in each case? These are not always easy questions to ask or answer.

Tips for communicating with carers as the person nears end of life

• Enable a conversation about end-of-life concerns, both between yourself and the carer, and between the carer and their loved one. Practitioners may worry about offending or upsetting the carer (or the cared-for person), but the worst thing is to say nothing.
• A good place to start can be to ask more general questions about difficult conversations. For example: “In your family, how do people begin difficult conversations?”; “In your household, if someone wants to talk about a sensitive subject who is usually the person to initiate that?”
• We have come across many families/couples who want to talk about difficult or painful matters but wait for a time when it will feel easier. In our experience, the time for it to feel easier never comes. Practitioners should gently probe the possibilities here, perhaps suggesting that planning for dying can be done in the same way as we plan for other unwanted events, like an accident or a burglary. We make an insurance plan and then put it on the shelf to be brought out as and when.
• You may encourage carers to reflect on the personal cost of ignoring the inevitable. You can ask: “If you didn’t have to worry about upsetting them, is there anything you would like to talk about with them?” And if they tell you, you can answer: “What do you think would happen if you were unable to have that conversation with them?”
• The only exception to the rule of persevering with discussions along these lines is if there are reasons to suspect that the carer is abusing the dying person, in which case local authority safeguarding procedures should be followed.

Professionals need skills in initiating and engaging in conversations that are often avoided because they are so difficult. By modelling these conversations, we can encourage individuals and communities to be less frightened of death and more ready to become involved in end-of-life care.

Useful resources to share with carers in end-of-life situations

• Hospice UK’s information and support resources and advice from its Dying Matters campaign.
• Carers UK’s helpline, 0808 808 7777, which is available, Monday to Friday, 9am-6pm.
• Healthtalk.org’s section on caring for someone with a terminal illness.

The guide also covers applying the law on assessment, support planning and review to support carers at this difficult time. Inform Adults subscribers can access the full guide here.

What to read next

• Tips for keeping assessment processes strengths-focused
• How to communicate with people who are deafblind
• Tips for coping with difficult conversations

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.