Identifying “Harm” in Palliative Care

…when death is the

anticipated outcome

Dr David MacKintosh, Senior Staff Specialist, Central Coast Palliative Care Service, NSW

Australasian Association of Bioethics and Health Law, Sydney, 2013

drdmac1@gmail.com

Case…

• AB - 73 year old woman• Chronic airways disease – emphysema• Cancer of the kidney• Admitted to a hospice at family’s request – acutely

unwell (2 days) –capacity lost• Family requested no active management• Hospice staff agreed• AB died peacefully four days later• Family grateful for care• Hospice staff – job well done

Australasian Association of Bioethics and Health Law, Sydney, 20132

Has AB been harmed?

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Patient Safety?

• ‘freedom from accidental or preventable injury produced by medical care’– ‘How do I harm thee? Let me count the ways.’

– Drug adverse effects– Chopping off the wrong leg– Untimely death

Australasian Association of Bioethics and Health Law, Sydney, 20134

Patient Safety?

• Medline 2012 – ‘Patient Safety' – All disciplines - 1694 citations– Palliative Care - 5 citations

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Untimely death

• Curative medicine– You need a very good excuse

• Palliative care ‘cultural’ perspective– Death normalised– The Death Denying Society

• Does PC need a good excuse?• Are rules of clinical governance different?

Australasian Association of Bioethics and Health Law, Sydney, 20136

For our purposes, ‘harm’ is…

• A circumstance which causes a person to be in a bad state– Non-comparative (badness is bad in itself)

Australasian Association of Bioethics and Health Law, Sydney, 20137

Harm is always bad, but…

• Magnitude – degrees of badness• Constipation vs Death

• Mitigation available – still bad, but…• ‘all things considered…’ e.g. death as release from

unbearble suffering

…despite mitigation…

Australasian Association of Bioethics and Health Law, Sydney, 20138

…but, …despite mitigation…

• Harm still exists: ‘harm as fact’• Has magnitude but is not amenable to mitigation

• Harm experienced: ‘lived harm’• Has magnitude, is amenable to mitigation

Australasian Association of Bioethics and Health Law, Sydney, 20139

For our purposes dying is:

• The period of life during which the processes which maintain life begin to fail irreversibly– Hours to days

• Not applicable where death is anticipated but not imminent– Weeks to months (Pre-dying)

• He was sick and was going to die anyway

Australasian Association of Bioethics and Health Law, Sydney, 201310

For our purposes death is:

• Death1- Moment of irreversible cessation of life

or

• Death2- The continuing state following irreversible cessation of life

Australasian Association of Bioethics and Health Law, Sydney, 201311

Death as harm…

• Loss of a portion of a life that would otherwise have been lived

• Epicurus (341 BC to 270 BC) – ‘Death is nothing to us’ (Letter to Menoeceus)

• Death2… the state of being dead, NOT loss of life lived

• Curative medicine - ultimate harm

• Palliative care - ? Australasian Association of Bioethics and Health Law, Sydney, 201312

Death as harm…

• Any circumstance that leads to a reduction in life lived can be considered to be a harm (‘harm as fact’)

• Mitigation through an all things considered approach (e.g. burden vs benefit) may reduce the magnitude of the harm of death (‘lived harm’) but does not remove it

Australasian Association of Bioethics and Health Law, Sydney, 201313

Was AB harmed?

• AB - 73 year old woman• Chronic airways disease – emphysema • Cancer of the kidney• Admitted to a hospice at family’s request – acutely

unwell (2 days) –capacity lost• Family requested no active management• Hospice staff agreed• AB died peacefully four days later• Family grateful for care• Hospice staff – job well done

Australasian Association of Bioethics and Health Law, Sydney, 201314

AB…

• The rest of the story…• Emphysema - No recent admissions to hospital

(Predying)• Extent of the cancer unknown (Predying)• Interesting lifestyle – burdensome for husband /

family• Respite admission to hospice in week prior to final

illness– Subsequent death unexpected, unanticipatable

• Acutely unwell for only 2 days prior to admission

Australasian Association of Bioethics and Health Law, Sydney, 201315

Right Time? – Right Reason?

• Would AB have died from one of her diseases?– Probably; eventually

• Did she die from one of her diseases?– Probably not

• What did she die from?– We don’t know

• Possibly urinary sepsis – potentially treatable

Australasian Association of Bioethics and Health Law, Sydney, 201316

Possible harmsA circumstance which causes a person to be in a bad state

• Loss of a portion of life that would otherwise have been lived – Untimely death

Australasian Association of Bioethics and Health Law, Sydney, 201317

Contributing harmsA circumstance which causes a person to be in a bad state

• Deprivation of access to adequate assessment and treatment that may have mitigated that loss– As a result of

• Subordination of AB’s interests to– Substitute decision makers’ interests – release from

burden of care– Obiesance to Palliative Care / Hospice Perspective

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Conflicting needs

• Substitute decision makers interests– What constraints if any can / should be

imposed on substitute decision makers?

• Palliative Care / Hospice perspective– What is its place?

• Normalisation of death• The struggle against Death Denial

– Is it any of their business?

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Mitigating circumstances

• None known

• Suggestions please

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Restitution available

• None

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?

• For possible harms– Do such harms exist?

Should we care about them?Can we do anything about them?Should we do anything about them?

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