Advance care planning

Do we really know what our

patients want & do we respect it?

Dr Karen Detering Respecting Patient Choices Program

Austin Health

karen.detering@austin.org.au

Mr K, aged 62

• Separated, wife lives nearby, 5 children

• Medical history

• Severe COPD

• Ischaemic cardiomyopathy

• Undertook advance care planning Dec 09

• Son appointed as substitute decision-maker

• Completed ACP electing to have “trial” of life-sustaining treatment

Mr K continued....

• 2010 - 3 admissions - exacerbations COPD

• Early 2011 – 2 admissions – exacerbations COPD

• September 2011

• Presented with exacerbation of COPD

• Managed on ward, deteriorated

• Intubated, ICU for 3 days

• no reversible factors identified

• patient extubated

• 1/7 later, died on ward with sons, and wife present

Impact of advance care planning for Mr K

• Family very happy with care received

• Staff felt comfortable

• Clear plan of management

• No conflict

• Reduced staff time required to manage patient

and family

• Staff happy with outcome as they knew patient

wishes followed

Mr G, 81 YO

• lives with wife, 3 children

• Pulmonary fibrosis – diagnosed in July 2011

• treated - steroids & oxygen. Poor response to Rx

• increasing SOB, and oxygen requirements.

• Recurrent infection requiring IV antibiotics

• ACP was introduced. July 2011 – he declined

• In January 2012 he was approached again:

• Not for intubation / Not for ICU

• Not wishing further hospitalisation

Mr G Continued …..

• He discussed his wishes with his GP, and

documented his wishes.

• Wife as his substitute decision maker

• Subsequently became unwell - infection & SOB

• GP called, not ambulance (as he would have

previously done)

• Died at home with family present

Background – medical decision-making

• Competent patients can refuse unwanted medical

interventions, even if death is the likely outcome

• This is well established ethically and legally in the

practice of modern medicine

• Ethical principles:

• Autonomy & Informed consent

• Beneficence vs. non maleficence

• Dignity & Respect

Decision-making in non competent patients

• Substitute decision maker

• Decision making guided by

• Previously completed Advance Care Plan

• “Substituted judgement” –aim to reach the

decision patient would reach if competent

• Consideration of the patient’s “best interests”

What Is Advance Care Planning?

• Advance care planning:

• Assists patients to reflect on their values and

beliefs in relation to their goals of medical care

• Encourages patients to

• Appoint a substitute decision maker & discuss

their wishes with this person

• Document their future treatment wishes

• Only comes into effect if the person becomes

unable to make their own decisions

Why is ACP important?

• Most people die after chronic illness

• 80% of deaths occur under medical care & ~ 50% not competent when near death

• Family & friends – significant chance of not knowing our views without discussion

• A doctor who is uncertain will, with good intention, treat aggressively

People being kept alive under circumstances that are not dignified, and in way they would not have wanted

Coordinated ACP:

• Trained non medical staff facilitate ACP

• Work closely with patient’s health care team

• Assist patients / relatives to reflect on patient’s

goals, values and beliefs

• Encourage appointment of SDM and documentation

of wishes

• Uses current legislation

• Makes sure documents are clear and available

Building the evidence

Randomised controlled trial of ACP

• English speaking, competent patients ≥ 80YO

• Main diagnosis - Cardiac / Respiratory

• Intervention – coordinated ACP

• 81% patients completed ACP

• 86% expressed wish re end-of-life care

• 82% wish re CPR, 75% wish re LPT

• Family involved – 74%, ↑ likelihood of completing ACP

• Average time taken - 64 minutes

What happened to decisions after ACP?

Yes Y- DOO No Delegate Don’t know

Pre ACP (%) 27 23 38 0 12

Post ACP (%) 3 31 47 18 1

Cardiopulmonary Resuscitation

Yes Y- DOO No Delegate Don’t know

Pre ACP (%) 67 9 22 0 2

Post ACP (%) 2 37 33 24 4

Life-prolonging Treatment

Wishes regarding CPR?

Yes Y- DOO No Delegate Don’t know

Pre ACP (%) 27 23 38 0 12

Post ACP (%) 3 31 47 18 1

Cardiopulmonary Resuscitation

Yes Y- DOO No Delegate Don’t know

Pre ACP (%) 67 9 22 0 2

Post ACP (%) 2 37 33 24 4

Life-prolonging Treatment

Wishes regarding life-prolonging treatment?

Yes Y- DOO No Delegate Don’t know

Pre ACP (%) 27 23 38 0 12

Post ACP (%) 3 31 47 18 1

• move to less aggressive treatment

• delegation of decision making

Cardiopulmonary Resuscitation

Yes Y- DOO No Delegate Don’t know

Pre ACP (%) 67 9 22 0 2

Post ACP (%) 2 37 33 24 4

Life-prolonging Treatment

Other results:

• ACP patients more likely to be satisfied regarding

• overall hospitalisation & information provided

• being listed to

• level of involvement in decision making

• their own / their family

Other results:

• Control patients- negative comments

• the doctors don’t listen

• I felt ignored and in the way

• They don’t want me as I am too old

• They wouldn’t speak to me, and kept

discussing things with my family

Deceased patients

• Primary outcome measure:

• Patient’s wishes known and respected

• Intervention 86%

• Control 30% p < 0.001

• No difference in mortality between groups

• Location of death

• ICU: 0 intervention pt, 4 control pt (p = 0.03)

Impact of death on surviving relatives

• Death of a relative can cause significant anxiety,

depression and post-traumatic stress

• How do you quantify the impact?

• IES: Impact of Event Score

• HADS: Hospital Anxiety & Depression Score

Deceased patients (56 patients)

Intervention Control P value

Number of people with IES > 30 0 4 0.03

Number of people with HADS –

depression > 8 0 8 0.002

Number of people with HADS –

anxiety > 8 0 5 0.02

FM’s satisfaction with the quality

of death

Very satisfied: n, %

Satisfied: n, %

Not satisfied, n. %

24, 82.8%

2, 6.9%

3, 10.3%

13, 48.1%

8, 29.6%

6, 22.2%

0.02

FM’s perception of patient’s

satisfaction with the quality of

death

Very satisfied: n, %

Satisfied: n, %

Not satisfied, n. %

25, 86.2%

1, 3.4%

3, 10.3%

10, 37.0%

10, 37.0%

7, 25.9%

<0.001

Deceased patients (56 patients)

Intervention Control P value

Number of people with IES > 30 0 4 0.03

Number of people with HADS –

depression > 8 0 8 0.002

Number of people with HADS –

anxiety > 8 0 5 0.02

FM’s satisfaction with the quality

of death

Very satisfied: n, %

Satisfied: n, %

Not satisfied, n. %

24, 82.8%

2, 6.9%

3, 10.3%

13, 48.1%

8, 29.6%

6, 22.2%

0.02

FM’s perception of patient’s

satisfaction with the quality of

death

Very satisfied: n, %

Satisfied: n, %

Not satisfied, n. %

25, 86.2%

1, 3.4%

3, 10.3%

10, 37.0%

10, 37.0%

7, 25.9%

<0.001

Deceased patients (56 patients)

Intervention Control P value

Number of people with IES > 30 0 4 0.03

Number of people with HADS –

depression > 8 0 8 0.002

Number of people with HADS –

anxiety > 8 0 5 0.02

FM’s satisfaction with the quality

of death

Very satisfied: n, %

Satisfied: n, %

Not satisfied, n. %

24, 82.8%

2, 6.9%

3, 10.3%

13, 48.1%

8, 29.6%

6, 22.2%

0.02

FM’s perception of patient’s

satisfaction with the quality of

death

Very satisfied: n, %

Satisfied: n, %

Not satisfied, n. %

25, 86.2%

1, 3.4%

3, 10.3%

10, 37.0%

10, 37.0%

7, 25.9%

<0.001

Deceased patients (56 patients)

Intervention Control P value

Number of people with IES > 30 0 4 0.03

Number of people with HADS –

depression > 8 0 8 0.002

Number of people with HADS –

anxiety > 8 0 5 0.02

FM’s satisfaction with the quality

of death

Very satisfied: n, %

Satisfied: n, %

Not satisfied, n. %

24, 82.8%

2, 6.9%

3, 10.3%

13, 48.1%

8, 29.6%

6, 22.2%

0.02

FM’s perception of patient’s

satisfaction with the quality of

death

Very satisfied: n, %

Satisfied: n, %

Not satisfied, n. %

25, 86.2%

1, 3.4%

3, 10.3%

10, 37.0%

10, 37.0%

7, 25.9%

<0.001

Survey of surviving family members

“He had a very peaceful death, just as it should have been, & I would like to thank all staff for this.”

“Even though we already knew what he wanted it was great to be able to talk about it so openly.”

_____________________________________________

“Mum didn’t want heroics. I was horrified to hear she received 45 minutes of CPR. She didn’t want it. All anyone had to do was ask.”

“The doctors kept asking if dad should be resuscitated. I didn’t think they should keep asking, as they also told us it wouldn’t help him. It was obvious to us he was dying.”

Benefits of ACP

• ACP improves end of life care and patient

satisfaction with care

• ACP assists family to:

1. know patient wishes, be involved in ACP

discussions

• More able to make decisions

• Less burdened

2. Have less risk of stress, anxiety and depression

3. Be more satisfied with quality of patient’s death

Illness trajectories

Illness trajectories

Erratic e.g. organ failure – COPD

Illness trajectories

Erratic e.g. organ failure – COPD

ACP in patient with chronic / life limiting illness

• Hope for the best/ plan for the worst

• Determine patient’s treatment preferences during an

acute exacerbation/ deterioration

• Consider a “trial of treatment” if appropriate

• Reassure that discussing ACP

• Will not diminish focus on maximizing outcomes

(incl. survival if this is a goal)

• limiting LPT does not equate to limiting care

• discuss a commitment to non abandonment

ACP - the present and the future

• ACP – should be part of routine health care

• Acute, sub acute, GP, community, aged care,

well elderly

• Incorporated into hospital standards, government

policy

• All health care staff need to be aware of concepts,

know what to do if patient has ACP, how to respond

to requests for ACP

www.respectingpatientchoices.org.au