Ethics at the

End of Life

“As soon as a person is born, it must at once and necessarily

be said: He will not escape death. Of all things in the world,

only death is not uncertain.” -Augustine

Certain and Necessary...

The human mortality rate is holding steady at around the 100% mark

Is it the task of the physician to “stave off death”?How well are we able to come to terms with the limits of medical care?

Remember...

Ethical• Outline principles of

medical ethics- And their application to difficult end-of-life decisions

• Clarify ethical distinctions and criteria– That inform medical

care for EOL patients

Social / Cultural• Identify social and

cultural attitudes towards ageing and dying – and their influence on end-of-life decision-making

• Review more ways to address patients’ fears and concerns during the final stages of life

Objectives...

The backdrop...We are living in an ageing society

Population Ageing: Statistics ONS (2012 Updates)

Other Cultural Trends:• Individualism: autonomy, self-reliance• Cult of Youth: anti-ageing industry / fears of ageing• Technological control: power to alter circumstances

of life– EXTERNAL (environment)– INTERNAL (self)

• Medical Advances: longer lifespan, cures for acute illnesses, increasing chronic illness and old age

• Distance from death: sanitised out of the home, ‘death denying’ and death defying culture, psychological refusal to acknowledge mortality

The backdrop...

The last 100 years, and especially the last 50 years has shown us the most advances in medicine

Extended lifespan has increased chronic illness

See ‘The Denial of Death’ – Becker, (1973/4)

The backdrop...

Illustration...DEMENTIA- Affects1 in 6 of 80+; 1 in 3 of 90+

-Alzheimer’s most common form dementia-Increasing incidence due to ageing population

Disease becomes a symbol of frightening burdens•Old age and dying•Fear of becoming dependent•Fear of having others dependent upon us

Dependence & Disability in an ageing society

LIFE HISTORY OF DEPENDENCE: it is part of the whole of human life

Common fear with ageing:• Becoming a burden on others

Dependency undignified?Life always begins with dependence• Preborn, newborn, young child

Life often ends with dependence–Old age and sickness–Loss of capacities

1st PRINCIPLE: Human dignity and personhood»Not something we ‘have’ at some points in our life»We remain persons with dignity throughout the whole of life

Dependence & Disability in an ageing society

DIMENSIONAL:• Scale of disability on which we all fall– Matter of more or less– Different periods in our lives – different points

on the scale• When we pass from one point to another:• we remain the same individual we were before making the transition• we don’t lose our personhood, dignity, or basic rights• human dignity is given (not granted)

– can be respected or violated

Modern Views...MODERN PSYCHIATRY• Might be seen as viewing dependence in

pathological terms– Dependent personality disorder– Co-dependent couples etc

MODERN PHILOSOPHY–Self-sufficiency superior to dependency–Moral philosophy emphasises•Individual autonomy•Capacity for making independent choices•But, emphasis might be seen as TOO ONE-SIDED

Exaggerated fears of dependency in old age...

Failure to recognise:– Extent of dependence throughout lifespan

Illusion of total control, complete autonomy:– Fostered by technological advances

Individualistic cultural attitudes:– Devalue social ties, mutual solidarity

Realities of ageing population:– May help correct one-sided values– Foster acceptance of care, encourage social

solidarity

Ageing, dependence and disability for you, for me, now and in the future...

Typically think of ‘disabled’, the elderly, the dependent, as ‘them’ rather than ‘us’; a special class or ‘interest group’

‘They’ are actually US– as we have been– as we are– as we will be

Medical Decisions at the End of Life

• An area that provokes a lot of anxiety– Patients and family members can be

ambivalent, afraid of making ‘wrong’ decisions

– Doctors can be uncertain – especially in ‘borderline cases’

> Ethical Principles....

Basic Principles / Values...Hippocratic starting point....

Doctors are healers: never directly aim at or intend death

Sometimes it may be ethically justified to withhold or withdraw potentially life-extending medical treatments> Is this aiming at or intending death??

Distinctions...–When treatment is withheld/withdrawn

we are aiming to dispense with the treatment, not the patient

–Might it be that we need not do everything to ensure the longest possible life?• We allow cars on the road, even though we

know their potential to destroy life– Our decisions may hasten death• Does not imply aiming at death, right?

Ethical Criteria: withholding/withdrawing

treatment

• When treatment is judged to be futile• When treatment is judged to be

excessively burdensome to the patient– Little expected benefits, high

burdens/risks

What choice..?• Refusing futile or excessively

burdensome treatment:– NOT choosing death, rather a different

quality of LIFE– Not rejecting life, as such, but rather

rejecting a life with added burdens of aggressive treatment

– NOT choosing death, but perhaps one of several LIVES open to us, even if a shortened life

Note about terms...• Useless / futile / burdensome– Refers to potential treatment /

intervention– Does not refer to value of patient’s life

• Refusal to treat / rejection of treatment because of feeling of ‘being a burden’ (to family, society etc)– Rejection is not of treatment but of life

itself– Ethically unacceptable? Prejudiced?

Proportionate Treatment

• Not too painful, burdensome, expensive– Reasonable chance of working

• Ethically obligatory– Pt has right to this; duty not to reject it– To refuse may imply suicidal intention

• Example: psychiatric consult – Otherwise healthy young patient – Refusing insulin injections– Depressed, did not want to live (suicidal intent)

Disproportionate Treatment

• Excessively burdensome or useless– For given patient in particular

circumstances• Acceptance/refusal prudential decision– Can justifiably be withheld or withdrawn

• Does not imply – doctor’s intention to kill – or patient’s intention to die

Proportionately beneficial vs disproportionately burdensome

(futile)Importance of context:- treatment in one context might be right for

one, but not appropriate for another- Eg. DIALYSIS: Young acute renal failure patient vs end stage cancer patient

- These terms do not simply describe a treatment, the describe a treatment within a particular clinical context

- Judgement is relative to individual patient and the particular circumstances of the case

Tough Cases...• Nutrition and Hydration in EOLC– Is it medical treatment or ordinary care?– Is it always proportionately beneficial?– Is it, in some circumstances,

disproportionate?• Futile• Excessively burdensome?

N & H: Treatment or care?• Treatment

– Medical interventions• Medications• Surgery/procedures

• Care– Natural means for

preserving life, along with• Shelter, warmth,

turning to avoid sores, cleaning wounds etc

In most cases:- N&H is care- Aim is nourishment

and sustenance- Aim is not alteration

of disease process- True even when

delivered by artificial means

Exceptions...• Where food and water no longer achieve

their desired ‘aim’:– No longer provide nourishment and sustenance– Can be true of spoon-feeding or tube feedingFUTILE OR EXCESSIVELY BURDENSOMEEg patient in process of dying: organ systems

failing- no longer absorb food or assimilate nutrition- Chronic patient: excessive discomfort, aspiration risk

Learning to be aware of limitations...• Do you agree that we are not

advocating...– ...that extending life at all costs is

always the imperative?– ...that a dying person should not be

allowed to die?– ...that we are obliged to use all

extraordinary means to keep a person alive?

Quality of life considerationsaffecting the decisions around EOLC• OBJECTION: shouldn’t the decision be

based on quality of life?– This objection appeals to our empathy

for the patient– It may arise from legitimate fears • That a person may be brutalised by

technology’s ability to prolong life• Fear of living a life of prolonged suffering

A ‘Slippery Slope’...• No universal standard to judge the quality

of life– May start with altruistic motives

• Judgments will eventually be determined by– Economic pressures– Political pressures

• Arbiters of ‘quality of life’:– Initially – patient, proxy, medical staff– Eventually those with economic interests– Decision-making power open to abuses

• Hippocratic Oath:– ‘Into as many houses as I may enter, I

will go for the benefit of the ill...”– Placed at the service of the individual

sick person• Not an administrator of social resources or

political programs• Not an agent of state power/authority

Hippocratic Paradigm...

Physician Assisted Suicide, Euthanasia...• Intentionally causing/intending

death, in order that suffering may be eliminated– Sometimes proposed as a solution to

burdens of care-giving, suffering, or prolonged illness

– Becoming / has been legalised in certain places

Human Life and Human Goods...

• Human life not merely instrumental good, but inherent good– Not something we ‘have’ or possess– It is what we ‘are’, living, being– Our life is our person

• Without life, we can possess no other goods– precondition for all other human goods• Inc. Autonomy, independence, rationality etc

Human Life: Value...For your reflection:• Life is a good– Of the person– Not just for the person

• To treat our life as a ‘thing’ that can be disposed of or authorise another to terminate is:– Contradictory, dehumanising– Destroys every other human good (inc autonomy –

in exercising our autonomy, we destroy our autonomy)

Physician Assisted Suicide...

• Misguided attempt to completely control death– Irony: trying to master one event that

finally shows our lack of complete mastery• Opposed by GMC– Erodes ethic of healing

• Represents a palliative care failure– Requests cease when symptoms and pain

and depression treated

Legitimate Fears...• Rise of medical technology: mixed

blessing?– People fear they will be kept alive

beyond what they can endureBUT...

• Ethical criteria can guide complex decisions– Recommend and provide proportionately

beneficial treatment– Recommend against or withdraw futile

or disproportionately burdensome treatment

Your role as physician...• Addressing fears:–We do not live in a society where futile

care is typically refused:• Eg have one more round of experimental

chemo– Do not want to give up hope• But we may unintentionally subject people

to harm• False medical hope in last days• Important to educate patients / proxy

– Understand what they are accepting / rejecting

What we learn...• We understandably want some control over life

– Over-zealous attempts to completely control life/death can be seen as ‘dehumanising’

• Limits to medical technology– Futile / disproportionately burdensome interventions

need not be attempted• Never abandon care

– Even when cure is impossible• Limits to human autonomy

– We are not the sole author of the story of our life– We are dependent rational animals– To be a physician is to be part of this interdependence

Ageing and Dying...“Against our confidence in mastery and control, we need to remember that old age and dying are not problems to be solved but human experiences that must be faced. In the years ahead, we will be judged as a people by our willingness to stand by one another, not only in the rare event of a natural disaster but also in the everyday care of those who gave us life and to whom we owe so much.”

-Dr Leon Kass, Washington Post article