Failing to Plan is Planning to Fail: Advance Care Planning for People Nearing the End of Life

Abstract

Following the inaugural meeting in Melbourne, Australia, in 2010, the newly formed International Society for Advance Care Planning and End of Life Care (ACPEL) held its second International 3-day conference in London in June this year, hosted by the UK team of which Keri Thomas was convenor. This article gives an overview of the conference and one delegate‘s perspective (R Newman). With over 400 delegates from across the world representing 22 different countries, the conference and society represent the increasing international recognition of the importance of holding and recording advance care planning discussions with people nearing the end of their lives, with a particular focus on the growing needs of the elderly in our society.

The idea of the International Society for Advance Care Planning and End of Life Care (ACPEL) was inspired by the collaboration between like-minded people that arose during the preparation for the Inaugural International Conference on Advance Care Planning held in Australia in 2010. The founding President of ACPEL is Bill Silvester, Director of the Respecting Patient Choices Programme and Intensive Care specialist in Australia. The ACPEL and their annual conferences bring together a uniquely disparate group of people from widely different health and social care backgrounds, with differing expertise and experience from over 20 countries worldwide, all united by the desire to improve the care that we provide to the people who entrust themselves to us. This conference was the second of the ACPEL and was held in London, UK. Next year, the conference moves to Chicago, IL, USA in May 2012.

The ACPEL‘s objectives include:

• Promoting universal access to quality advance care planning;

• Promoting excellence in care for people near the end of life;

• Promoting the provision of physical, psycho-emotional and spiritual care in the context of advance care planning and end-of-life care.

In the context of the radical demographic changes across the world and the increasing aging populations, the shared vision and commitment of ACPEL members is to seek ways to clarify the needs, wishes and choices of people nearing the end of life, and to enable these to be respected and enacted, in alignment with their preferences

“By assisting people to undertake advance care planning we honour their autonomy and give them the opportunity to reflect upon, and tell us, how they wish to be cared for if they lose their ability to consider or communicate their views.” [101].

The origin of ACPEL is interesting. A number of intensive therapy unit clinicians from across the world are becoming increasingly concerned that elderly people are being admitted to their units when such admissions and potential over-interventions were not in the person‘s best interest, and with earlier proactive planning were preventable. As one intensive therapy unit specialist said “Just because something is possible to do, doesn‘t mean it is right for every person.” In the NHS in the UK, there is a well-known need for policy regarding major savings and improved cost–effectiveness that can be made from reducing avoidable or inappropriate hospital admissions. Marrying this with the increasing awareness of end-of-life care, the possibility of earlier planning if we identified these people earlier, and the recognition that if we listen more astutely to their wishes many admissions and interventions would be avoided with consequent financial benefits, this is a potential ‘win–win’ situation.

Although newly formed, the current membership is open to all those committed to engaging with this vitally important issue. So it brings together people not only from hospitals and intensive therapy units, but from community, primary care and palliative care units, hospices, care homes, teachers, academics and ethicists, volunteers, experts in communication skills, spirituality, children‘s care and emergency care, and strategic planners and policy drivers from across the globe and from all sectors of society.

For the London conference, over 400 delegates came from 22 countries for up to 3 days, with 14 invited expert plenary speakers and 200 abstracts accepted as posters, oral presentations or workshops. Each plenary was covered and topic areas were linked with abstracts. There was good representation from England‘s policy developments on end-of-life care and advance care planning from the Department of Health (England) plus representatives from geriatrics, primary care, care homes, palliative care and others.

The event coincided with the 7th Annual Conference of the Gold Standards Framework (GSF), with presentations of work in care homes, domiciliary care, primary care, acute hospitals and other areas [102]. The first day concluded with the presentation of the GSF Quality Hallmark Awards by Baroness Julia Neuberger to some of the successful GSF accredited care homes, with interviews and a celebration of their success.

Plenaries & keynote lessons

The ACPEL conference was opened by this year‘s convenor (Keri Thomas), the Chair (Bill Silvester) and Teresa Tate from the Department of Health End of Life Care Programme. During the opening plenary Joanne Lynn spoke of the fact that we are only just starting to acquire experiences from those who live for long periods of time with incurable illness, and that the whole concept of what ‘dying’ constitutes has altered immensely over the last few decades [1]. We know that our aged population is expanding, and there are enormous resource issues regarding healthcare delivery, but she emphasized taking the question back to patients – what are their priorities for care at the end of life? This should drive resource allocation – a common theme for the conference – back to the patients and carers themselves, to inform future strategies and service developments. Other excellent plenary speakers included Dame Jo Williams, Chair of Care Quality Commission (CQC; UK) and Simon Conroy (Consultant Geriatrician, the Royal College of Physicians [RCP], UK) who reinforced the importance of listening to people and the value of advance care planning discussions. Bill Silvester spoke of the development and substantial uptake of advance care planning across Australia, and spoke of the new International ACPEL based there. Sara Davison, a renal physician from Clinical Ethics, Canada [2], described the growing and significant evidence base for advance care planning, including the finding that it can increase rather than diminish a sense of hope in some studies. She presented evidence of significant inaccuracies in both surrogates’ and physicians’ assumptions of a patient‘s treatment preferences, especially in patients with dementia or cerebrovascular disease. Accuracy improved following facilitated advance care planning discussions. The importance of retaining hope and supporting decision-making was later affirmed by Carole Robinson [3] – one patient and carer said that this “opened a door we knew was there, but could not turn the key of”. Baroness Ilora Finlay challenged ‘accepted wisdom’. She also expressed the opinion that a disproportionate amount of time is spent on the issue of euthanasia and physician-assisted suicide, relevant to very few people, whilst huge numbers in the developing world cannot access basic opioid analgesia [103]. John Ellershaw spoke of the conference promoting common values and vision from multiple international perspectives, and the need to continue to strive for excellence, and organizational and cultural change. At a basic level we are asking ‘what would our patients want?’ and ‘what does ‘good’ look like?’

Care homes & dementia care

Advance care planning discussions are becoming well established within the community, care homes, hospices and other settings, and Keri Thomas, representing the National GSF Team, spoke of the widespread successful adoption of advance care planning within the integrated structure of the GSF training program in care homes, she said that for all accredited GSF care homes, advance care planning discussions are offered and recorded for every resident, with evidence that these views influence the care provided. Karen Harrison Dening and Beke Tshuma discussed advance care planning in patients with dementia, clearly identifying that the ‘advance’ in advance care planning refers to the planning being “in advance of the loss of (mental) capacity” [4,104]. Many healthcare professionals question whether any dementia patient could follow an advance care planning process, but their work identified levels of cognitive decline where patients could contribute to an advance care planning process. There was a significant divergence between patients and surrogates (carers), and if carers were present in discussions, they often spoke for/over patients.

In relation to hospitals, the keynote speaker Randall Curtis presented a study from the USA, where 20% of deaths occurred in intensive care units and that family satisfaction increased the more the family talked (and the less the doctor spoke) [5]. Other priorities were not abandoning the patient, patient comfort and family support. A useful mnemonic was VALUE: Value family statements, Acknowledge emotion, Listen to family, Understand patient as a person and Elicit family questions. Several workstreams focused on the growing integration of advance care planning within hospital care. Peter Saul, Intensive Care Unit Consultant from John Hunter Hospital, Australia, presented stark figures regarding deaths in acute settings in New South Wales, Australia, where there was a 60–70% chance of death in an acute setting, with an average of eight admissions and two emergency department attendances in the last year of life [6]. Karen Detering took the issue of surrogate decision-making further, highlighting misunderstandings regarding differences between different powers of attorney [7]. Legal frameworks for appointment of surrogates vary significantly across the international community. Early identification of end-of-life patients in acute settings, where the majority of deaths occur (commonly medical admissions units), is vital to improve timely quality end-of-life care. For example, the AMBER care bundle at Guy‘s and St Thomas’ Hospital (UK) [8] and the use of GSF in Acute hospitals improving cross-boundary integrated care (as presented by Karen Groves from Southport Hospital, UK).

Other lessons learnt on strategic developments, tools and research evidence included a plenary and workshop based on the UK General Medical Council‘s (GMC) report on end-of-life care from Sharon Chadwick and Barbara Miller, who discussed advance care planning discussions about preferred place of death in noncancer patients [9]. They concluded that discussion of where patients did not want to die was vital. When patients are very unwell – specifying what they do not want to happen is easier than engaging in full advance care planning discussion. A presentation from Australia demonstrated a tool for evaluating advance care planning programs, emphasizing the need for a whole system approach that incorporates establishment, sustainability, advance care planning education, quality processes and community engagement [10], communications skills, and the similarities and differences in required skills between clinicians and researchers [11]. The English NHS End of Life Care Programme and Intelligence Unit ran a workshop related to UK policy developments and integration in the light of radically aging populations.

Spiritual care remains an underdeveloped area, but was represented in several abstracts, including work covering staff perceptions, raising awareness, assessment and development of training [12]. Reverend George Pitcher, representing the Archbishop of Canterbury, spoke eloquently in affirming the importance of including this area, and that dependency is being perceived as negative – perhaps we should accept that living longer results in a return to dependency on fellow humans at the end of life, as at the start.

Internationally, there were presentations and posters from most of the 22 countries represented – including work aiming to improve psychosocial and spiritual care of patients in Catalonia (Christina Lasmarias [13,105,106]), work in Hong Kong, Singapore, Taiwan and Japan, as well as the significant lead from those from Australia, New Zealand, Canada and the USA. (Abstracts from the wide-ranging poster exhibition were published in BMJ Supportive & Palliative Care[14].)

One of the most entertaining session was that of Poh Wah Lee from Singapore‘s Lien Foundation, presenting on growing public awareness and use of DIE-logues, Legacy Albums, ‘say it’ flower bouquets, caregivers’ journals; print advertisements, documentaries in English and Chinese, and use of social websites. The ‘Happy Coffins’ campaign and competition attracting 733 entries from 37 countries, with winning designs made into actual coffins for exhibition [15].

Conclusion

The use of advance care planning discussions and the new International ACPEL are a growing force across the world. This involves deeper and structured listening to people nearing the end of life and their families, and enabling the delivery of care in alignment with their preferences. Patient (and family) stories are extremely powerful both personally and politically, and may help drive forward improvements in quality service delivery, prioritizing funding and resource allocation.

This conference affirmed the importance of this area, but did not belittle the challenges ahead, and provided inspiration and motivation to continue to drive forward the development of quality end-of-life care, incorporating advance care planning as a process informing its delivery, not just to individuals, but to populations across the globe.

Acknowledgements

The authors wish to thank H Pickering, Royal Cornwall Hospital Trust, UK, for secretarial support and Rebecca Morley, The GSF Centre, UK.

Financial & competing interests disclosure

K Thomas was convenor of the conference and is now Secretary of International Society for Advance Care Planning and End of Life Care (ACPEL) – all unpaid. She is Clinical Director of the National GSF Centre and the Annual Gold Standards Framework (GSF) Conference coincided with the ACPEL Conference on this occasion. The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed.

No writing assistance was utilized in the production of this manuscript.

Additional information

Funding

K Thomas was convenor of the conference and is now Secretary of International Society for Advance Care Planning and End of Life Care (ACPEL) – all unpaid. She is Clinical Director of the National GSF Centre and the Annual Gold Standards Framework (GSF) Conference coincided with the ACPEL Conference on this occasion. The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed.