The how-to of delivering an ACP in difficult times
With Drs. Paul Deehan (PD), Kieran Dinwoodie (KD), and Catriona Nisbet (CN), General Practitioners, NHS Lanarkshire
For advance care planning, this is the best of times. It is also the worst of times.
It is the best of times because the COVID-19 emergency makes advance care planning particularly relevant for high-risk patients with severe frailty or conditions such as COPD.
Many patients and their families are receptive. An Anticipatory Care Plan (which is the name used in Scotland) anticipates what the future may hold if someone has a life-limiting condition or is faced with a life-threatening illness. An ACP is the vehicle for a conversation about personal wishes, realistic choices, and feasible interventions - before the intense pressure of a medical emergency makes decision-making difficult. There has never been, in the history of the NHS, a time when this is so needful.
But it is also the worst of times. The COVID emergency has generated unprecedented levels of anxiety for everyone, and the anxiety is focussed on the threat of death. Approaches to patients about ACP – and more often family members – can intensify that threat.
Sadly too, the topic of ACPs has recently attracted adverse publicity. Sections of the media have indulged in wilful misunderstanding – that ACPs are about rationing care or ageism. Neither of these is true. But it makes the present task of delivering ACPs much more difficult. Some GPs have described the atmosphere as “intimidating”*.
In this blog, we will offer some pragmatic tips about how to deliver ACPs in the COVID era. I am grateful to three Lanarkshire GPs (PD, KD, CN) who have grappled with the challenges and applied practical solutions for ACP delivery in their own practice.
At first glance an Advance Care Plan seems like the ideal solution to so many of the challenges of modern medical care, especially out of hours and at weekends. The list of objectives is long (see first video below).
POA - Power of attorney
Understanding ACP objectives is helpful. But having a personal mantra that motivates the time and effort that ACPs require is probably better. The best of the bunch is: “Make it easier to do the right thing” (KD) My own is “Reduce uncertainty. Reduce harms. Reduce suffering”.
There is no doubt that having an ACP – in both primary and secondary care settings - is worthwhile. In a landmark study, 86% of patient with a Plan had their end-of-life wishes respected and fulfilled, compared to 30% of those who did not have a Plan1. In another study, the rates of non-beneficial interventions and medical harms were 2-3 times higher in hospitalised patients without a Plan2.
How? - identifying and contacting appropriate patients
The “blanket” application of ACPs has attracted widespread, often justified, criticism3. But just as for COVID-related “shielding”, it is helpful to identify patients who are likely to benefit from ACPs.
This can be facilitated using tools such as the Gold Standards Framework4. Many practices have registers comprising patients a. who are moderately frail or very frail5 or b. who are on a palliative care register. Each of these categories is distinct although there may be overlap between them. Not everyone in each category needs an ACP but the data in Box 1 highlight typical numbers.
Practice population (n)
Palliative care register**
Box 1: examples of the number of patients with frailty or with palliative care needs in three general practices and who would likely benefit from an ACP. * Calculated using Electronic Frailty Index5 ** In our local practices, only approximately one third of patients who are likely to be in the last 12 months of life using Gold Standards Framework criteria4 are entered into a palliative care register.
In the light of recent difficulties, contacting individual patients needs to be sensitive, multi-faceted and flexible. The tone of the initial approach is critical. Many patients do not respond well to a “one off”. A step-wise approach, perhaps beginning with written material, needs to be available. Three Lanarkshire practices provide variations on an introductory telephone call, an explanatory letter, and a booklet* as a “conversation starter”6. There is agreement that the person who knows the patient best is often best suited to introducing the topic e.g. community and practice nurses.
In the past, a tick box approach to ACPs has been tried but failed. The burden was too great. The quality was poor. The aim now is to provide ACPs to selected patients for whom having an ACP is going to matter, without an excessive burden of consultation or administrative work.
*The Coping with Crisis booklet is sold on a not-for-profit basis via the Goals of Care Charity (Reg. No. 049682). GSK are not affiliated with the charity and do not benefit in any way through the sale of this product.
How? - opening the conversation
An ACP conversation begins with an invitation. Thereafter the aim is to put patients, and more particularly their relatives, at ease and calm the fear factor thoroughly before going any further. Most experienced clinicians will have a language repertoire that achieves that. “Does the possibility of becoming ill [with COVID] make you anxious?” “Do you know anything about what an ACP is, or why it might be helpful?” Consent may be implied but is always necessary.
An explanation of “why ACP?” includes describing its purpose - what an ACP achieves if health deteriorates or there is a crisis. “It is always better to have a plan than not have a plan” or “If you ever need to go hospital, that’s not the best time to be making big decisions” or “I have seen so many patients get treatment that they don’t want or isn’t going to help from well-meaning young doctors. It helps immensely if you have already got some ideas worked out in advance”. For many it’s about how to avoid powerlessness in a crisis.
What? - the substance of the conversation
Although a written ACP outlining the preferred goals of care is an important objective, it is in many ways the icing on the cake. The benefit of the conversation lies in creating a thinking environment: “think – talk – record”. It may be helpful to write things down and then leave time for them (or next of kin) to confirm later. The ACP modified recently by Health Improvement Scotland for COVID is short and crisp and useful7.
A bank of possible questions is provided in Box 2. But the aim is to listen to answers rather than motor through a complete list of questions. With experience, the best questions and hence shared decision-making emerges out of the patient’s narrative. In turn this leads to what is written on the pro forma.
When asking a patient to think about future treatment options, I try to get them to reflect on trends over the previous 6-12 months including hospital experiences. Then, acknowledging that recent trends are likely to continue into the future, patients are invited to think ahead: reflection on the past followed by anticipation of the future. This is the basis for establishing goals of care.
ACPs are not gatekeeping tools designed to prevent hospital admission. Some patients with COPD loathe the prospect of hospital admission; for others, admission affords the only possibility of comfort and security. Even when an acute illness is likely to be terminal, dying at home needs to be not just desirable but realistic and feasible.
The most frequent difficulty in ACP conversations concerns Do Not Resuscitate. DNR should never be the starting point for a conversation. Public misunderstanding is rife especially as to the difference between cardio-respiratory arrest and a “natural death”. Time is often wasted because CPR is actually not relevant to most patients’ illness trajectory or treatment plan. The issues are complex and in the limited time available, providing information that can be grasped is a challenge; better to rely on appropriately informative material.
Dealing with family members who “want everything done” starts with trying to understand their fear / inadequacy / potential guilt about decisions regarding a loved one’s care. CN states “I try to assure family members that I carry the load of decision-making, not them”. “What would your mother really want?” can be followed by a description of things that can happen when someone doesn’t have an ACP, and a promise that the provisions of an ACP are not written in stone: they can be changed.
For resistant colleagues, building a consensus that ACPs represent “best practice” is step 1. Thereafter it is important to create a permission-giving environment that allows any member of an MDT to be trained to take the initiative in ACP conversations (with the pro forma endorsed and documented by the GP later on). Perhaps best of all is to highlight the issue of job satisfaction. One of us (PD) describes the ACP work as “liberating”. The liberation applies to patients as well as clinicians - from being enslaved to “fix it” medicine which is so often harmful and is not necessarily what patients need or want.
1.Detering KM, Hancock AD, Reade MC, Silvester W. The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. BMJ 2010: 340: c1345.
2.Lightbody, C. J., Campbell, J. N., Herbison, G. P., Osborne, H. K., Radley, A., & Taylor, D. R. (2018). Impact of a treatment escalation/limitation plan on non-beneficial interventions and harms in patients during their last admission before in-hospital death, using the Structured Judgment Review Method. BMJ open, 8(10), e024264.
3.Covid-19: Don’t apply advance care plans to groups of people, doctors’ leaders warn. BMJ 2020; 369: m1419 Doi: https://doi.org/10.1136/bmj.m1419 (last accessed 01 June 2020)
4.Gold Standards Framework. 2020. https://goldstandardsframework.org.uk/gsf-signposting-and-guidance-on-the-coronavirus-epidemic (last accessed June 2020)
5.Electronic Frailty Index https://ihub.scot/media/6106/frailty-and-the-electronic-frailty-index.pdf (last accessed June 2020)
6.Coping with Crisis: navigating the challenges of medical decision-making in critical illness. www.copingwithcrisis.org (last accessed June 2020)
7.Health Improvement Scotland Anticipatory Care Plan for COVID. https://ihub.scot/improvement-programmes/living-well-in-communities/anticipatory-care-planning/covid-19-anticipatory-care-planning/ (last accessed 01 June 2020) Go to: Essential ACP Guidance and template.
The Coping with Crisis booklet is sold on a not-for-profit basis via the Goals of Care Charity (Reg. No. 049682). GSK are not affiliated with the charity and do not benefit in any way through the sale of this product.
Professor Robin Taylor has received an honorarium from GSK for developing this article/content.
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