End of Life Decisions

Peter SaulNewcastle, NSW

Be careful, then, and be gentle about death,For it is hard to die,It is difficult to go through the door,Even when it opens.

D H Lawrence

“There is always an easy solution to every human problem - neat, plausible, and wrong”

H L Mencken 1917

This talk

• Dying is getting harder– Late, from chronic disease– Technology does prolong life– Decisions must be made for which we are ill-

prepared• There are no simple solutions– “Living Wills”– “Euthanasia”

Mrs A

Mrs A age 89yrs

• Long term resident in nearby RACF• Cognitively impaired• Wheelchair-bound with spinal arthritis• Recurrent UTI’s – several hospital admissions• Daughter listed as “next of kin”• Advance care directive in notes

At 1 am…

• Mrs A became very ill (BP 70)• Mrs A said:– Do nothing– Don’t ring my daughter (she’s on holiday)– Don’t ring the GP– I don’t want to go to hospital again

GP contacted

• After hours service– “call an ambulance”

3 am - in the ED…

• BP still low despite fluid and antibiotics• No urine output• Mrs A was clearly disoriented and confused– “I just want to go home”

• Still refusing treatment verbally (but allowing us to do everything)

In the ED…

• Advance care directive requested from RACF (not sent with patient as it was RACF policy not to)

• 2 years old• “Statement of wishes” form.• No-CPR order• Refused “life support” for any illness from which

she was not expected to make a “reasonable recovery”.

• What do we make of this?

In the ED…

• Daughter really was on holiday (and had no mobile).

• Niece contacted– “Do everything”

What did we do?

• We concluded the the ACD did not constitute a palliative care order.

• Mrs A, while refusing treatment was fully cooperative.

• We accepted the no-CPR order, but transferred her (against her will) to a private ICU for limited support.

• She stayed for a week, and was transferred back to the RACF in good spirits

A goodoutcome

A goodoutcome ?

90% of life gained after 2003 is with profound (core) disability

Change in demography of death

Everything has changed…

• When we die• What we die of• Where we die• How we die

The Big Movers• Dementia (7th to 3rd)• Diabetes (9th to 6th)• Falls (41st to 20th)

7000 deaths/year

4000 of them in acute care hospitals

Mostly in ED and ICU

Most are incompetent at the time a decision is made

The “Do Everything Default”

The D.E.D.

• Technical imperative• Medical imperative• Defensive practice• Medico-legal mumbo-jumbo• Subspecialisation and the SEP Field• Failure to recognise dying• Unwillingness to go there

Dysthanasia

Change in demography of death

Rise of “patient autonomy”

The rise of patient autonomy

“Living Wills”

• Uncommon• Legalistic• Vague• Not available• Unsupported by families/carers• Mystifying to doctors• Failed in trials and in legislation

Living Wills

• Level 1 evidence that you can get people to write them– J Crit Care 2004;19:1-8

• Level 1 evidence they don’t work– Arch Int Med

2004;164:1501-1506

Hastings Center Report 2004

Advance Care Directive

Substitute decision makers

MOLST medical summaryDiagnosis and co morbidityCo morbidity is increasingly

the biggest predictive

indicatory of mortality

Summary of prognostic indicators

observed over the past 6

months

Identification of advance

care planning discussion and

documentlocation

Medical advice re hospital based life sustaining treatment

Substitute decision maker

identification documented

MOLST medical ordersAttempt CPR

supports discussion re

success rate of CPR

Accept natural dying reinforces

that dying is anticipated

Clear instructions on

when to transfer to

hospital and use of critical care services

Goals of antibiotic therapy clarified.

Options other then IV administration are identified and

opens up discussion

opportunities

Identification ofartificial feeding and fluids as medical treatment,promoting furtherdiscussion opportunities

Consent for treatment

documented.MO ordering

treatment identified

Any section not completed implies

full medical treatment for that

option

Only work as part of a community-wide system of care.Health literacy the key first step.

7 out of 8 elderly patients with a potential for critical illness would not want CPR or ICU support

(but 7 out of 8 of their children would insist on it)

Advance care planning – keys to success

• Improve health literacy• Engage the family/carers• Cultural sensitivity• Get doctors on board• Find opportunities• Make sure plans are honoured• Engage the community

“Dying with Dignity”

Dying with Dignity

Dying with Dignity

Dying with Dignity

Dying with Dignity

Dying with Dignity

Euthanasia

Definitions

• “An act of euthanasia is one in which one person – Kills another person– For the benefit of the second person– Who actually does benefit from being killed”

Baruch Brody

“Euthanasia”• Mercy killing of the

incompetent• Mercy killing of the

competent• (Physician) assisted suicide• Terminal sedation• Refusal of reasonable

treatment• Withholding of reasonable

treatment• Unassisted suicide• Refusal of food and water

by the competent

• Withholding of food and water from the incompetent

• Withdrawing treatment from the competent

• Withholding treatment/ANH from the incompetent with/without a plan

• Withholding/withdrawing treatment with no real likelihood of success from people who don’t want it

“eu” means rightful, appropriate not just plain “good”

“The great thing about failure is that it requires no preparation”

Conclusion

• Dying is getting more difficult• We can’t guarantee a good or dignified death• We must stop recklessly inflicting dysthanasia

and avoidable indignities• Doing this is complex and subversive