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