Anticipatory Care Planning:
the challenges, the limitations,
the benefits
PROFESSOR D ROBIN TAYLOR
CONSULTANT PHYSICIAN,, UNIVERSITY HOSPITAL WISHAW
HONORARY FELLOW, UNIVERSITY OF EDINBURGH,
ADDICTION to
the CURATIVE
MEDICAL MODEL
DEATH DENYING
and
DEATH DEFYING
CULTURE
Anticipatory Care Plan
Shared decision making
Prognostic conversations
Contextual honesty
Cultural attitudes to human mortality and the role of health care
Anticipatory Care Plans
– scope and objectives
A communication tool designed to reduced uncertainty due to discontinuity of care
A prompt designed to reduce harms by addressing overtreatment (curative intent) and undertreatment (supportive / palliative care)
A vehicle for implementing patient-centred choices and goals of care especially towards the end of life
A mechanism for reducing costs related to wasteful high-end medical interventions
Anticipatory Care Plans
– an unequivocal good?
Robins-Browne et al. Intern Med J. 2014; 44: 957-60.
- Value assumptions re. the benefits of ACPs
- The myth of autonomy at the end of life
- Eventual tension between what is realistic / feasible
versus what is unrealistic / unattainable
- Conflation of wishes of patient and those of family
members
- Routinisation
e.g. Use of ACPs for all rest home residents (Australia)
Clinicians pad for completion of ACPs
(cf. immunisations, cervical smears)
The challenges of ACP
– human reluctance to anticipate
King Solomon said: “It is better to go to a house of mourning than a house of feasting, for death is the destiny of everyone; the living should take this to heart”
So, how many of us ….
- have a financial plan for retirement income?
- have completed an advance directive?
- have life insurance / sickness insurance?
- have prepared a will?
- have made funeral arrangements?
It’s just too hard!
ACP perspectives: patients, families
Cultural / generational issues re. decision-making
Does not want to discuss (about 15-20%)
No idea about illness trajectory / prognosis esp. non-malignant
disease
Taboo about the term “palliative care”
Think that a conversation will be anxiety-provoking (<5%)
A written plan is going to be inflexible / will need to be changed
BUT
❖ Reduction in uncertainty, reassurance, peace of mind
❖ Opens the door to different goals of care
Boddy et al., Aust. J Primary Health. 2013: 19: 38-45
Trained to treat. End of life care is someone else's job … and so is the conversation.
Reluctance to initiate conversation - “If the patient wants it they’ll ask for it”. (Only 15% of patients will ask; only 30% of doctors will take the initiative)
Time management: it takes too long: other things are more urgent
Timeliness: windows of opportunity
Review: obsolescence, the need to be up-ro-date
Medico-legal issues (Tracey, Montgomery)
BUT
❖ Reduction in uncertainty, harms, and relief of moral distress
❖ Job satisfaction following a “good death”
Boddy et al., Aust. J Primary Health. 2013: 19: 38-45
It’s just too hard!
ACP perspectives: clinical staff
Organ system failure:
continuous change
Fun
ctio
n
Death
High
Low
Frequent admissions, self-care becomes difficult
2-5 years but death often
seems “unexpected”
Time
Occasions for a fresh ACP assessment
Anticipatory Care Plans
Making Choices
Advanced Care Plan for patients with chronic respiratory illness
ACPs: the domains for discussion
➢ Prognosis – what does the future hold?
➢Managing uncertainty in the acute care
setting:
best case scenario / worst case scenario
➢Goals of care (incl. quality versus
quantity?)
The impact of advance care planning on
end of life care in elderly patients:
randomised controlled trial
❖ Hospital initiated ACP
❖ 56 / 125 randomised patients died within 6 months
❖ 25/29, 86% with ACP had their end-of-life wishes respected compared with 8/27, 30% among controls (P<0.001)
❖ Family members of patients who died had significantly less
stress (P<0.001), anxiety (P=0.02), and depression (P=0.002)
than those of the control patients.
Detering et al., BMJ 2010; 340: 1345
“It’s just too hard! Perspectives on
advance care planning”
“The tubes go in and the tubes go out, the
tubes come in and the tubes come out,
and I just wonder if anyone is ever going to
make a decision about the tubes?”
Boddy et al., Aust. J Primary Health. 2013: 19: 38-45
HACP: component parts
➢ Scope and triggers
➢ Reminders: capacity, discussion,
previous ACP decisions
➢ No DNACPR without HACP!
➢ Goals of care
➢ Reversible problem?
➢ For full escalation?
➢ For DNACPR?
➢ Individual treatment options
(disease specific list: YES / NO)
➢ Endorsement / signatures
➢ Guidelines incl. medico-legal
➢ What is urgent is dealt with in isolation: the context of an
acute event is often neglected
➢ Limited treatment aims: to achieve recovery from the
acute event
➢ Default interventions are protocol-driven and may be
indiscriminate.
➢ Risk versus benefit ratio is skewed: the risks of NOT
intervening motivate inappropriate decision making by
out-of-hours staff
Discontinuity of care in crisis management
Problems with DNACPR
➢ Misunderstandings:
- that success rate for CPR is high (in fact it’s only 18% overall)
- DNACPR perceived to be a surrogate for withholding other treatments
➢ Discussions about DNACPR in isolation or out of context are difficult and distressing to patients, relatives and clinicians.
➢ CPR is about one potential intervention; many others are much more relevant.
What interventions are appropriate / not
appropriate if the patient deteriorates?
Hospital ACP (HACP)
– aka Treatment Escalation Limitation Plan (TELP)
Category Description of ‘problem’
1 Assessment, investigation or diagnosis
2 Medication / IV fluids / electrolytes / oxygen
3 Treatment and management plan
4 Palliative or end-of-life care
5 Operation/invasive procedure
6 Clinical monitoring
7 Resuscitation following a cardiac or respiratory arrest
8 Any other type not fitting into the categories above
Structured Judgment Review Method, Royal College of Physicians
Hutchinson et al., BMJ Quality and Safety. 2013.
The Structured Judgement Review Method
(Royal College of Physicians, London)
Incident Rate Ratios: all patients (n=289)
HACP +
DNACPR
N=155
DNACPR
only
N=113
p Neither
HACP nor
DNACPR
N=21
p
‘Problems’ 1.00 2.05 (1.62 – 2.58)
<0.001 1.78 (1.19 – 2.68)
<0.001
Non-beneficial
interventions
1.00 1.98 (1.48 – 2.64)
<0.001 1.44 (0.83 – 2.50)
0.198
Harms 1.00 2.77 (1.96 – 3.92)
<0.001 2.61 (1.50 – 4.55)
<0.001
Lightbody et al. BMJ Open, 2018
Description of clinical ‘problem’
as per Structured Judgment
Review
All patients HACP and
DNACPR
DNACPR only Neither HACP
nor DNACPR
1 Assessment, investigation or
diagnosis 12.5 6.7 25.2 34.8
2 Medication / IV fluids /
electrolytes / oxygen 19.5 12.6 33.9 58.0
3 Treatment and management
plan 21.3 11.5 40.0 92.8
4
Palliative or end-of-life care 15.8 7.8 33.9 34.85 Operation/invasive
procedure 2.8 1.1 4.4 34.8
6
Clinical monitoring 4.5 2.2 8.7 23.2
7 Resuscitation following a
cardiac or respiratory arrest 2.8 0.4 4.3 58.0
8 Any other type not fitting the
categories above 5.0 3.3 8.7 11.6
Rate of events per 1000 patient days
Conclusions
➢ Anticipatory Care Planning is inherently but not
unequivocally good.
➢ ACPs are grounded in honest prognostic conversations and
a patient-centred approach to setting goals of care.
➢ ACPs have the potential to enhance concordance between
patient choices and clinical outcomes. They reduce
uncertainty and harms. But they cannot deliver all things to
all people.
➢ The obstacles to using ACPs are societal and institutional.
Implementation will improve as the death taboo and the
pre-eminence of the curative medical model are pro-
actively addressed.
References
1. TREATMENT ESCALATION LIMITATION PLANNING
https:// vimeo.com/204400091
Password: NHS2017
2. The impact of a treatment escalation / limitation plan on non-beneficial interventions and harms to patients approaching the end of lifeLightbody et al., BMJ Open 2018; 8:e024264. doi: 10.1136/bmjopen-2018-02426