key: cord-0927127-iuce4j1e
authors: Borgstrom, Erica
title: Models will only get us so far: planning for place of care and death
date: 2021-04-20
journal: Age Ageing
DOI: 10.1093/ageing/afab070
sha: 77b29b22012a1f4ca4d5cae86837b64dbe1362fe
doc_id: 927127
cord_uid: iuce4j1e

nan

Over several decades, there has been increasing attention given to how, as a society and as individuals, we can ensure that people age and die well. On the latter point, end-of-life care policy has focused on place of death as a mechanism for and measure of improving the quality of care [1] .

Being cared for and dying in one's usual place of residence, including a care home, has been presumed to be both desirable and beneficial for dying people, those who care for them, and the bereaved [2] . Nevertheless, operationalising this ambition across all groups and geographical areas has been difficult, not least because not everyone has the same preference and/or access to

resources [3] . Moreover, the assumptions about the importance of 'dying at home' have been challenged [4] . [6, 7] . At its core, this logic presumes that considering and discussing preferences -for example around preferred place of death -can enable patients, informal carers and care professionals to align care provision to the preference [8] . The decision-making model presented here suggests ways in which to support these elements with an emphasis on the information people may need, including information that is accessible, culturally appropriate and in a language the person can understand. The model also encourages considering the decision-making context, such as capacity and the network of people involved. Whilst they do not go as far as to suggest relational autonomy, there is an understanding that some of the decisions being made are not just about the older person. This is evident in their example of how advance care plans may need to be renegotiated and reconsidered as care options change during the COVID-19 pandemic, such as the impact of visitor restrictions. Others have also recommended thinking about joint discussions and plans to acknowledge the COVID-19 context [9, 10] .

Advance care planning is an evolving field [11] and this may be a useful model for many for capturing a variety of aspects to be considered during the ongoing process of decision-making. However, like most models, it will not in itself do the work. It requires people being willing or able to articulate their preferences -and some may not wish to do this or may consider the future differently to how advance care planning orients time. As seen in other studies about shared decision-making and advance care planning, for it to be effective, those employing this model still require skills and judgment on how to communicate, how to weigh up different factors and manage potential tensions between these elements and/or between people. It takes a commitment to have conversations early, revisit decisions once they have been made and accept that they can be fluid, which has not always been done before [12] . Moreover, for the outcomes to be realised, there will need to be an ongoing effort to ensure the preferences and decisions can be enacted even if they change: assessing needs, providing supports, facilitating adaptation. Patient, families, carers and

professionals therefore not only need access to information, but also a range of skills and resources that facilitate making preferences a reality.

If aligning place of care and death with the dying person's preference is considered an outcome, the process of advance care planning can be a useful mechanism for determining and preparing for such preferences. However, place is not the only 'outcome' that matters to many people -they may be more concerned about how they are cared for, or who they can see, or how much control they feel they have. Advance care planning can consider a much wider remit than just location of care, and it may be the processes of discussion that most beneficial for some. Importantly, decisions -in how they are made, enacted, and experiences -are inherently relational, involving and impacting the dying person and also those who care about them and for them, including health and social care professionals. There is therefore further scope to consider what good outcomes look like for this wider network and how to support them all through the changing contexts of care during the end of life and the COVID-19 pandemic. Models can be useful to support conversations but they will only get us so far. 

Is it recorded in the notes? Documentation of end-of-life care and preferred place to die discussions in the final weeks of life

Is home always the best and preferred place of death?

Socioeconomic position and use of healthcare in the last year of life: A systematic review and meta-analysis

The 'problematisation' of palliative care in hospital: an exploratory review of international palliative care policy in five countries

Do Patients Want to Die at Home? A Systematic Review of the UK Literature, Focused on Missing Preferences for Place of Death

Planning for an (un)certain future: Choice within English end-of-life care

The Logic of Care: Health and the Problem of Patient Choice

Advance Care Planning in End of Life Care

Advance care planning re-imagined: a needed shift for COVID times and beyond

Reassessing advance care planning in the light of covid-19

Advance care planning: the future

Reappraising 'the good death' for populations in the age of ageing