Cohen and Chambaere imply that palliative care (PC) and ‘assisted dying’ (AD) will develop a loving relationship, albeit with compulsory marriage guidance.(1)

Claiming existing ‘integrated and synergistic’ links contradicts the fact that growth in PC services has stalled in Belgium and the Netherlands since 2012.(2) This assumes expert PC teams are accessible. In the UK, an estimated 118,000 people in 2017 could not access expert PC,(3) and only 15% of Canadians have access to publicly funded PC.(4) Even when PC is involved, the median duration of specialist PC involvement is 19 days,(5) barely enough time to resolve physical symptoms, let alone a wish to die.(6) Claiming PC or hospice involvement in AD patients is meaningless without knowing the expertise and length of involvement.

Suggesting that because some PC teams are involved in AD the rest must follow, ignores the depth of disquiet. Even 15 years after Oregon’s AD legislation, two thirds of hospices were refusing to participate.(7) The authors point to a paper which surveyed staff from two Canadian hospices.(8) This exposed profound concerns amongst staff about participation in AD but ignored the insidious impact of government mandates forcing hospice involvement, while glossing over reports of clinical complications and concerns about patients’ capacity and the steadfastness of their decision. There is no mention that Canadian AD legislation has removed many safeguards such as the 10-day reflection period, making AD quicker to obtain than most wheelchairs.

The suggestion that PC’s refusal to engage with AD is abandoning patients is a cynical ploy. The authors ask whether PC professionals are ‘uniquely positioned to evaluate legal requirements for MAiD such as the nature of suffering or the reason for the request’. There is no standard for suffering and no non-legal healthcare professional has the skill or training to make a dispassionate legal decision. Their very compassion exposes them to bias and fallibility such that they overlook coercion and manipulation. Switzerland is the only AD legislature in Western Europe to show some growth in PC services,(2) and yet is largely a non-medical model. PC teams should be free to care for all patients without the burden of AD involvement.

AD is a legal right in Canada, but PC is not and it is no surprise that PC remains deeply uncomfortable and suspicious of direct involvement with AD. Using healthcare to legitimise AD and exploiting palliative care to grease the process is disingenuous.

References
1) Cohen J, Chambaere K. Increased legalisation of medical assistance in dying: relationship to palliative care. BMJ Support Pall Care, 2022; http://dx.doi.org/10.1136/bmjspcare-2022-003573
2) Arias-Casais N et al, Trends analysis of specialized palliative care services in 51 countries of the WHO European region in the last 14 years. Palliat Med, 2020; 34(8): 1044-56.
3) Hospice UK. Hospice care in the UK 2017: from numbers to insight. London: Hospice UK, 2017.
4) Access to Palliative Care in Canada. Ottowa: Canadian Institute for Health Information, 2018, p6.
5) Jordan RI, Allsop MJ, ElMokhallalati Y, Jackson CE, Edwards HL, Chapman EJ, Deliens L, Bennett MI. Duration of palliative care before death in international routine practice: a systematic review and meta-analysis. BMC Medicine 2020; 18: 368.
6) Voltz R, Boström K , Dojan T, Rosendahl C, Gehrke L, Shah-Hosseini K, Kremeike K. Is trained communication about desire to die harmful for patients receiving palliative care? A cohort study. Pallia Med2022, Vol. 36(3) 489–497
7) Campbell CS, Cox JC. Hospice-assisted death? A study of Oregon Hospices on death with dignity. Am J Hospice Palliat Med, 2012; 29(3): 227-35
8) Mllett J, Macdonald ME. Medical assistance in dying in hospice: a qualitative study. BMJ Support Pall Care, 2021; http://dx.doi.org/10.1136/bmjspcare-2021-003191

I approve of the direction-of-travel of the approach in Wales, which it seems to me is more reflective and encompassing of the complexity of end-of-life than is the now widely-adopted ‘ReSPECT’ in England. The term Future Care Planning as used in Wales, explicitly includes planning made when a patient lacks capacity – for example, if the planning takes place when a patient is ‘comatose’ or ‘deeply unconscious’. Whereas the ReSPECT process, generates a main ReSPECT form (ref 1) which tells readers in its section 1 ‘The ReSPECT process starts with conversations between a person and a healthcare professional’. So, presumably any planning ahead which is only embarked on after a patient has already become unable to engage in conversation, should not be captured by either the ReSPECT process or by the ReSPECT form.

I believe that many NHS Trusts in England, in adopting ReSPECT have moved too far in the direction of trying to create a form which seeks to be ‘all things to all readers’ - whereas in Wales, as we can read in the paper by Taubert and Bounds ‘The approach seeks to cater for the disparate need of the Welsh population; there is not merely one format for multiple scenarios, but a choice of approaches, communication strategies and documents to suit bespoke needs.’.

I have only two issues with the paper. One is this sentence, which is in fact from the European Association for Palliative Care definition of ACP: ‘It encourages individuals to identify a personal representative ...’. I consider it inappropriate, even if it is ‘convenient for ‘the NHS’’, to try and impose the identification of a single ‘representative’ (even setting aside that I’m not clear what ‘representative’ implies, especially in the context of decision-making) within the ranks of relatives and family-carers - ‘hierarchy’ is not an easy fit within many families. However, the paper does make it clear that in Wales the approach has gone beyond, or differs from in some ways, the EAPC definition of ACP – what I am unsure of, is whether Wales has avoided attempts to ‘identify or nominate’ a single person as what I will here describe as ‘a ‘senior or main’ contact or family-carer’ (unless, of course, the patient wishes to do that: my reservations are about situations when a person is being equally-supported by several different people, such as by three daughters).

My second issue, is with this sentence: ‘Some patients may wish to take control and fill in and cosign their own advance decision form, while others may prefer their clinician to help them set this up.’. I find the word ‘cosign’ misleading and inappropriate in the context of a written Advance Decision: an ADRT should be signed by the patient and witnessed by another person. That isn’t in my mind ‘cosigning’. Some patients might decide to create their own written Advance Decision(s), in line with the requirements of sections 24-26 of the Mental Capacity Act, and some patients might have their signature witnessed by someone other than a clinician – both are allowed by the MCA’s requirements for ADRTs. Asking a doctor, or nurse, to help you create a written ADRT, is of course an option and I believe clinicians should then help: but, that does not amount to the patient ‘not taking control’ of the ADRT – if the patient isn’t in control of his or her ADRT, I suspect the document would not ‘stand up’ legally.

I entirely agree with the authors when they state: ‘Advance and future care planning is a complex topic area for healthcare professionals, patients, carers and policymakers alike. It is not likely that a ‘one-size fits all’ approach will ever meet the different needs of the population, and so different forms and approaches are offered in Wales.’.

As it happens, I have recently published a piece (ref 2) which investigates the complexity of planning ahead, especially for end-of-life and in the context of the MCA : one of my ‘conclusions’ is that ACP or FCP can only be useful, and cannot be ‘a panacea’.

Mike Stone Twitter @MikeStone2_EoL

Ref 1 https://www.resus.org.uk/sites/default/files/2020-09/ReSPECT%20v3-1-form...

Ref 2 https://www.dignityincare.org.uk/Discuss-and-debate/download/449/

We are responding to the recent article in the June 2021 edition of the online BMJ Supportive & Palliative Care Hospital deaths dashboard: care indicators article as the NACEL Clinical Leads.

Primarily, we were pleased to see that the NACEL metrics and audit themes had been used as the starting point for the dashboard. The scope of NACEL is to audit against the NICE Quality Standards and Guidelines, and the Five Priorities for Care, representing best practice in adults dying in hospital.

We would concur with the theme of the article that continuous quality improvement, and thematic feedback to clinical teams is a good thing, which must be promoted. As you are aware, NACEL is not commissioned to provide QI support directly to acute hospitals but does provide hospitals with the evidence and the tools for QI activity.

We would agree that the “less onerous” approach is usually good, and whilst NACEL initially set off in the first cycle with many data items to collect, we listened to feedback in subsequent years and pulled back significantly on the metrics requested. We can assure you that the NACEL Steering and Advisory Groups both aspire towards less data burden, and the ask of acute providers is reviewed after each audit cycle. In addition, the article also mentions that NACEL is ‘too onerous’ and provides ‘little specific data that can be used for continuous quality improvement’. We would wish to counteract this in that the metrics are chosen specifically to enable quality improvement, based on agreed best practice, and we understand from audit participants that their data is being reviewed locally after each cycle to inform quality improvement activity. It may be worth reviewing the current NACEL good practice case studies on the NACEL webpages where audit participants report that NACEL data has been used to this effect. To add to this, 81% of acute hospital audit participants reported in the last cycle that an action plan was produced and monitored using NACEL findings. The issue here would appear to be that NACEL is currently an annual data collection (as commissioned by the funders, NHS England and NHS Improvement and the Welsh Government), and doesn’t provide the continuous more rapid flow of data as suggested by the article which would be more useful. On this note, when NACEL is re-tendered, the funders are likely to ask for such an audit (more frequent reporting with key metrics only reported). This is likely to be a combination of the current Case Note Review and Quality Survey (survey of bereaved carers) audit elements.

One of the key bonuses of the NACEL data is that it provides comparison with other providers. It also helps to identify areas for improvement at local level and helps to inform business cases with robust evidence on key metrics. For example, we understand that many providers have used the workforce findings to pursue the case for additional SPCT funding, even for the ‘adequate’ coverage of 8 hours per day, 7 days per week specialist palliative care team coverage, of which 64% of organisations lack.

NACEL has the added advantage of the NACEL Quality Survey, which provides feedback directly from bereaved carers, providing intelligence on the needs of families and others and families and others’ experience of care, both of which being identified as needing additional development with 20% judging quality of care and support as ‘poor’ or ‘fair’. We feel that more continuous reporting would need to take in the views of bereaved carers more systematically.

Thank you for keeping us up to speed with developments in your neck of the woods. It may well be useful if we could formally consult with you once the scope and timings of the of the NACEL re-tender have been agreed with the funders.
Kind regards

Suzanne Kite and Elizabeth Rees
NACEL Clinical Leads

Acknowledgement: with thanks to the NHS Benchmarking NACEL team for support in drafting this response.

We have read with interest your letter about the changing face of day hospices since the onset of the COVID-19 pandemic. We would like to share our experience of support provided by our Wellbeing Centre team during this time which has evolved and developed into what is currently an entirely virtual service. This has been a challenging but also an extremely positive experience with an enthusiastic response from our patients wanting to engage in our extensive virtual offer of hospice wellbeing services.

In March 2020, we began by offering 3 virtual sessions per week. This has grown exponentially over the year and we are now offering up to 4 sessions per day with a total of 18 sessions per week supporting, on average, 23 patients per day. We have provided multiple types of support including yoga and other exercise classes, guided relaxation, art, Q&A sessions with our doctors, discussion support groups, carers’ groups, management of breathlessness and pain, and anxiety and fatigue management.

Age range of attendees of the virtual sessions have been between 40 to 90 years old, and from early to late in their disease trajectory. Between April 2020 and April 2021, we had 4,603 attendances with 413 referrals to the service.

We have conducted service evaluations to evaluate this new way of providing support to our patients and the feedback indicates that patients are keen for support to continue to be provided virtually.

“Keep at it even after lockdown finishes, it is too good not to use on the right occasions”

“Very useful and enjoyable Don’t want to lose this opportunity for support”

However, there is also excitement at the prospect of being able to return to the hospice in person.

“This is wonderful technology but cannot wait for the hospice to be opened for our Wellbeing classes and to come in person!”

We conducted a service evaluation of our virtual video interactions with patients after the first wave of COVID-19. 92% of Wellbeing attendees stated that they be happy to communicate with healthcare staff at our hospice via a video link in the future. In a separate service evaluation, it was noted that the most common reasons for patients wanting to attend the virtual Wellbeing sessions were for emotional benefits (63%), contact with others (58%), contact with the hospice (56%) and to receive support for their medical condition (44%).

Although this way of providing support to patients with life-limiting illness may not be the preferred method, we have been surprised by the enthusiasm of the patients and their keen uptake of the sessions. Alongside a return to face-to-face sessions when possible, we plan to continue to offer virtual Wellbeing sessions going forward given the great success of the programme and also the extending the reach of our service to support both patients and carers who may not be able to attend the hospice in person. Maintaining support and a link with the hospice during the pandemic and providing a form of social interaction for our patients who have been shielding at home during the pandemic has been really appreciated and valued.