This article was written by Naomi Richards in collaboration with Aileen Morton, Senior Policy & Advocacy Officer for Hospice UK in Scotland.
In early 2024, as the hospice sector in Scotland grappled with the prospect of another parliamentary vote on whether or not to legalise assisted dying, I was invited by Hospice UK to facilitate three interactive workshops to enable those working in the sector to discuss their views in a safe, managed space. The workshops were run in Glasgow (29th January), Edinburgh (7th February), and online (19th February) with over 100 attendees from 12 hospices across Scotland, with a wide spectrum of job roles represented – from hospice CEOs to clinical staff and volunteers.
A thematic overview of the issues raised shows that concerns about the legalisation of assisted dying fell broadly into five areas: the impact on the workforce; the perception and reputation of hospices; funding for hospices and palliative care; workload; and how conscientious objection, either at the institutional or the individual level, would operate. There is work to be done by those proposing the Bill to engage constructively and sensitively with those who would be vital delivery partners were the Bill to come into law.
Hospice UK is the national charity for hospice and end of life care. They represent the UK’s 200+ independent hospices, who support over 300,000 people every year. Hospice UK had previously received requests from member hospices in Scotland to provide open forums for those working in the sector to discuss the issue of assisted dying and consider the implications of the proposed assisted dying legalisation for them personally, whatever the job role, as well as for the sector in general.
Aileen Morton, Senior Policy & Advocacy Officer, and Helen Malo, Policy and Advocacy Manager for Scotland invited me to run three sessions on the topic and gave me a free reign to design the workshops in a way which was open, confidential, and respectful of a diverse range of views, but which would also help to call out some of the highly misleading stories (propaganda?) which is circulated by campaigners on both sides in what is a very heated debate.
As part of the End of Life Studies fully-online programme (micro-credential/PGDip/PGCert/MSc) at the University of Glasgow, I teach a course called Assisted Dying: Rhetorics and Reality. Over the 12 weeks of the course, I try to get students to understand why it is that assisted dying is seen as the answer to the problems of dying in the 21st Century, dispelling various myths along the way.
There have been three iterations of the Assisted Dying: Rhetorics and Reality course to date and each time it runs, students change their views over the 12 weeks (in both directions – from ‘for’ to ‘against’ or from ‘against’ to ‘for’). More often than not students’ awareness of the complexity of the issue increases and they become less strident and more nuanced in stating their views and in making claims.
Another hugely interesting element of the course is the fact that in an international cohort of students, some inevitably live in jurisdictions where assisted dying in lawful. This makes the live seminar discussions much more grounded and reveals a marked contrast in discourse between parts of the world where assisted dying is a legal option and those where it remains prohibited.
Hospice UK neither opposes nor supports a change in the law, but wants to ensure their members have the opportunity to contribute their views, experience and expertise to this national conversation. Hospice UK recognises that the views of staff, volunteers and trustees of their members will reflect the full spectrum of views on assisted dying that exist in society. They understand that people and organisations have strong opinions on this sensitive and emotive issue.
Hospice UK estimates that one in four people currently do not receive the specialist palliative care they need because of marginalisation and exclusion, exacerbated by a postcode lottery of patchy, uneven services and funding. They believe that the assisted dying debate must include discussion about how we can make good palliative care available and accessible to everyone, whoever they are and wherever they live.
The five broad themes identified (see below for more detail) matches what is known internationally about the key implementation challenges which can face a jurisdiction post-legalisation and will be instructive for the sector in terms of raising questions of the Scottish Bill as it is progresses through the Committee stage later this year (2024).
It is vital that the hospice and palliative care sector is closely consulted, as evidence from Canada, the US and some European countries indicates that between 74-88% of people who choose assisted dying also receive hospice or palliative care services. There is an unavoidable overlap. This statistic indicates that any legislation will not only rely on a palliative care workforce to implement it but will have an unavoidable impact on the entire sector which needs to be taken account of. Luckily, we are not operating in a knowledge vacuum and there’s lots of research from jurisdictions which have legalised which we in Scotland can learn from.
5 Broad Themes Identified in the Workshops
1. Impact on Hospice Staff
Concerns and opportunities were raised in relation to hospice workforce. Some felt that there were already unfilled vacancies in the sector, particularly at consultant level, and that this might cause further recruitment and retention challenges if people who opposed assisted dying leave the sector. Equally some felt the opposite, that people may consider joining the profession because of their interest in providing assisted dying, or in working in a professional space where it was offered. The point was also made that there will likely be a cultural shift over time as education and training filter through and those entering the health and social care professions will not know any different and it will be seen as part of the legal landscape.
Some concerns were raised about staff wellbeing due to the potential for division amongst staff on what many see as a “moral issue”, if there was disagreement between staff members’ views, or if staff felt caught between a patient and family’s different views.
2. Perception/Reputation of Hospices
A potential shift in public perception of hospices was raised, including a risk around increased fear of hospices if they become viewed as a place people go to access assisted dying. The idea that hospices are purely places people go to receive care in the final days of their life is already a myth hospices often find they have to bust. Hospices frequently raise awareness of the wide range of services they offer to counter this myth. Beyond the well-known and highly valued support they provide in the final weeks of life, hospices may provide outpatient, community, holistic, or spiritual services to people for many years before death, and their care goes beyond death too as they support families and friends through bereavement.
Some attendees raised that there is potentially an opportunity as well as a risk. Increased public discussions about the legalisation of assisted dying could open up the public conversation surrounding dying, death and grief. This may give hospices the opportunity to have more conversations with communities as they become more receptive to talking about dying, presenting opportunities to raise awareness of issues such as future care planning.
3. Effects on Funding for Palliative Care
There were concerns expressed about what impact any legalisation might have on funding for hospices. Would hospices which participated in delivering any law be negatively impacted if donors who opposed assisted dying withdrew financial support? Equally, would hospices which institutionally conscientiously objected and did not participate in any law (if this is permitted by the law) have funding withdrawn – either core NHS funding or a fall in charitable donations due to their opposition to the law?
There were concerns expressed about what impact any legislation might have on dedicated funding for palliative care more generally, beyond funding exclusively for hospices.
The concern appears not to be that funding would be explicitly reduced, but rather that palliative care would have to share existing funds with the administration of assisted dying legislation, in effect reducing time for palliative care delivery.
4. Effects on workload
There were concerns expressed that administering assisted dying would increase workloads within palliative care, as much of the time it would be palliative care patients who would be requesting assisted dying. Further, whether or not a hospice was directly involved in administering assisted dying, there would likely be a substantial training requirement across a wide range of staff.
5. Conscientious objection
There was interest in the option of conscientious objection and how it would work in practice. For example, at what point would a member of staff need to announce their objection and have permission to step away from the process? Would all clinical staff have the option of conscientiously objecting? Conscientious objection clauses work differently in all jurisdictions where assisted dying is lawful. Guidance is always required in addition to any law, and even then, the evidence from elsewhere suggests the parameters of conscientious objection are not always clearly defined and individual clinicians ‘operate across a continuum’.
Institutional conscientious objection was also a topic of interest in the workshop discussions. Would the law permit individual hospices to opt out of participating in the law? Would hospices in receipt of NHS funding be prevented from opting out? Could there be a process whereby it could be allowed on the premises in a designated area but without involvement of staff or using hospice resources?
Conclusion
Now that the Assisted Dying for Terminally Ill Adults (Scotland) Bill has been published, the hospice sector in Scotland will need to consider how to respond. Hopefully these safe space discussions held by Hospice UK will be helpful to hospice staff as they delve into the issues. While Hospice UK neither opposes nor supports a change in the law, they wish to ensure their hospice members have the opportunity to contribute their views, experience and expertise to the conversation.