Advance care planning and societal ownership of death and dying

Advance care planning and societal ownership of death and dying

Jacqueline Kandsberger

Advance care planning (or ACP) is a conversation-based process of preparing for the complex decisions that have to be made when a person is seriously ill and approaching death. I am currently researching ACP in a Scottish rural area focusing primarily on the perspective of GPs. I am particularly interested in how ACP ‘conversations’ are shared and co-ordinated, both professionally and personally.

‘Advance care planning is a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care. The goal of advance care planning is to help ensure that people receive medical care that is consistent with their values, goals and preferences during serious and chronic illness.’ International Consensus Definition of Advance Care Planning [1]

There is growing interest in ACP by those responsible for healthcare resource allocation in western countries. Mainly, because ACP responds to the increasing awareness that avoiding intensive, but often futile, interventions at the end of people’s lives is both a welcome alternative for people and cost-saving (2). At the local and national levels, Scottish policy is pushing for all individuals to be involved in the awareness and planning of their own end of life care. However, with the focus on healthcare provision, ACP discussions are rarely seen to play a role in actively changing wider cultural assumptions about the end of life.

It is my aim to delve into who is currently involved in ACP in Scotland. I am also interested in whether ACP might go beyond person-centred healthcare decisions, to become a wider force for promoting a sense of ownership in society about preparations for death and dying.

The current situation: ownership beyond GPs?
ACP is promoted from within GP practices in Scotland for good reason. Medical decisions are still at its core. Furthermore, the national electronic Key Information Summary (KIS), which functions successfully as an information linchpin for healthcare professionals, is filled out by GPs (3). This means nurses, social workers, psychologists, consultants, and other healthcare professionals, who may at times be more suitably placed for some people to discuss with and feed into the ACP plans, have to communicate their discussions to GPs in discharge letters. Although there are plans to change the process, it currently relies on the discretion and time available to GPs. How this centralised system will, for example, connect with care plans in psychiatry and dementia work is key to the agenda for implementation in Scotland.

ACP is strongly linked with policy on bringing resources and ownership back into communities, such as the portfolio of improvement work entitled ‘Living well in communities’. Yet, putting values, events, and other elements that are of personal importance to people on an equal footing with biomedical healthcare deliberations requires a monumental paradigm shift. ACP asks patients and doctors to merge healthcare with patients’ personal lives. In my research, difficulties with this were evidenced as ACP conversations centred mostly around treatment specific clinical wishes and preferences, less around personal relationships, and almost never around cultural and other values that might influence the individual’s decision making.

The national ACP document for Scotland, launched in June 2017, attempts to include the broader approach and is aimed at individuals with complex needs who are at risk of frequent admissions, because they have multiple chronic illnesses, are dying, or both. Questions in the document range from ‘what is important to me in my life right now (e.g. my family, pets, garden)?’ to listing medications and allergic reactions. It is a rich mix. Moreover, the document is around 32 pages in length (including five pages on end of life care) followed by a two-page summary for the person and a two-page summary for the GP (relevant for the KIS). It is hard work to fill out and not everyone will complete it. If current practice is any indication, it will require substantial changes. Based on my study of 77 expected deaths, only eleven individuals were known to have received any form of ACP related document (completed or not) to take home.

Though Scottish frameworks stress a focus on person-centred, pre-crisis discussions, my observations suggest that care planning often takes place reactively and with family members just as much as with patients. The main motivation and focus is frequently care management among different professionals, making the patient’s involvement no guarantee. Furthermore, doctors in Scotland always have and continue to retain the ultimate responsibility for making decisions about medical interventions. There is growing policy encouragement for identifying individuals at the end of life using screening tools of various kinds (4). The tools aim to increase awareness and support clinical judgement about what interventions are appropriate for these individuals. They might address current concerns about unwanted, futile interventions. While a welcome shift, they do not guarantee increased patient involvement.

Individual choice to take on ownership
For now, a core element of ACP is that of bringing together different voices, focusing on the voice of the person who is dying – if that is their wish. In my research I explore what motivates individuals to engage in such discussions. GPs often perceive it as a passive engagement triggered by the person’s acknowledgement of a terminal illness. At times people are motivated by wanting to simply be involved or to express wishes about limiting ceilings of care (such as limiting admissions to hospital). It could be argued that to fully take ownership, the person needs to also to take on a linchpin role, or at least be able to delegate this to whomever they feel could help and advocate on their behalf.

Yet asking individuals to address and share their end of life care planning in discussions is unlikely to succeed for everyone. It can be an emotionally charged and difficult process. There are good reasons to remain cautious about ACP. Even GPs who excel at communication will inevitably be faced with patients who are confused by and don’t know what to do with the opportunity to be involved in such a discussion, who do not want to contemplate where they would like to die, or even to think about the fact that they are dying. I found that roughly a quarter of patients were not open to these difficult discussions with their GP, with a further fifth either not having had the opportunity or no longer having had the capacity to decide.

What if changes in culture cannot come from within the medical field?
Maybe the personal elements of ACP are simply not observable from the doctor’s perspective, or a merging of the personal and professional seems unnecessary to the clinician. The fact that the ACP discussions are initiated by doctors’ perceptions of our prognosis may mean that we fail or feel unable to fully take on a sense of ownership for preparing for our care when dying.

The importance of sense of ownership was highlighted again recently when a colleague commented that it would be inappropriate for GPs to suggest to their patients that they go to cultural events such as death cafés. Death cafés are informal gatherings aimed at breaking the social taboo of speaking about death and dying. It is possible that a GP recommendation would suggest that such events are appropriate for addressing clinical symptoms, when the ethos of the death café is essentially about self-initiation, community exchange, and a willingness to engage in death-related conversations.

Having ACP discussions will for now continue to be driven by government healthcare initiatives. However, if we wish to remain determined that ACP is about people in some wider social, cultural, and even spiritual sense, then it is crucial for those that feel they can to take on a sense of ownership themselves, or at least delegate it to a healthcare professional or loved one.

Further ways to perceive involvement
A shift in the ACP objective from ‘planning’ which focuses on reactive answers to questions influencing medical decisions, to ‘preparing’ which highlights the importance of full engagement with those around us, has emerged in the international literature (5). Scottish government guidance includes a section that urges individuals to think about ‘who is important to you’ (and to make them aware of what is important to you) as well as information on Legal Power of Attorney (LPA). However, the key elements when moving into end of life ACP remain the ‘person’s understanding of their illness and prognosis’ and their ‘preferred place of care and views on clinical interventions’.

This limited focus is reflected by the fact that 60% of 220 medical records of patients’ whose death was expected in my study had a KIS, but only 13% had a note of a LPA anywhere. Discussions of preferences in case of potential loss of capacity took place in only one in five cases. Fears of burdening families with decision making stand in stark contrast to the fact, highlighted earlier, that most of the time a family member will be involved.

To gather an appreciation for sharing the ongoing process at the end of life and how important preparing ourselves and those around us might be, we need to find ways of learning about the effects ACP has on everyone involved, not just on place of care and the medical course of action that results. Sharing allows us to discuss and witness, as a society, what is important when facing death, with the potential of slowly building our personal and societal sense of ownership of death and dying. This is what separates ACP from the rest of shared decision making in medicine.

[1] Sudore, R. L., Lum, H. D., You, J. J., Hanson, L. C., Meier, D. E., Pantilat, S. Z., … Heyland, D. K. (2017). Defining Advance Care Planning for Adults: A Consensus Definition from a Multidisciplinary Delphi Panel. Journal of Pain and Symptom Management, 53(5), 821–832.e1.
[2] Klingler, C., In Der Schmitten, J., & Marckmann, G. (2016). Does facilitated Advance Care Planning reduce the costs of care near the end of life? Systematic review and ethical considerations. Palliative Medicine, 30(5), 423–433.
[3] Craig, J., Morris, L., Cameron, J., Setters, J., Varley, D., Lay, A., & Thompson, I. (2015). An evaluation of the impact of the key information summary on GPs and out-of-hours clinicians in NHS Scotland. Scottish Medical Journal, 60(3), 126–31.
[4] Maas, E. A. T., Murray, S. A., Engels, Y., & Campbell, C. (2013). What tools are available to identify patients with palliative care needs in primary care: a systematic literature review and survey of European practice. BMJ Supportive & Palliative Care, 3(4), 444–51.
[5] Sudore, R. L., & Fried, T. R. (2010). Redefining the “planning” in advance care planning: preparing for end-of-life decision making. Annals of Internal Medicine, 153(4), 256–61.


Jacqueline Kandsberger is a PhD student at the University of Glasgow, School of Interdisciplinary Studies, based in Dumfries. Her thesis analyses the constituent elements, roles, and determinants of End of Life Anticipatory Care Planning (ACP) and how this relates and could relate to outcome measures and indicators in Scottish healthcare.