Ethics in the Context of Age, Dementia and Palliative Care

Ian MaddocksCaroline Chisholm CentreOctober 3, 2013madd0064@flinders.edu.au

So many dumb ways to Die – does Palliative Care address them ?

What is ‘Ethical’ ?

“Then there’s ethics. Ethics is easy.Leave the shielas alone and don’t rubbish your mates:That’s all you need to know about ethics”.

Experienced GP addressing medical students, circa 1965

‘Mores’ are different from Ethics

Making sure that they stayed within the law, and kept the reputation of the profession safe, may have been a fair representation of the ethics of the Medical Profession at the time; has it changed? Have we also learnt from the Bankers to be greedy?

A paraphrase of Dickens’ view of lawyers (in Bleak House) was made by Davis McCaughey in a sermon considering medical ethics: “let patients in hospitals once clearly perceive that the grand principle of medical care is to make business for doctors at their expense, and surely they will cease to grumble”.

What ethic motivates doctors and health workers?

A questionnaire for applicants to the Christian Medical College at Vellore, India, asked: ” Apart from your desire to serve suffering humanity, why do you wish to study medicine?”

Traditional Ethical Issues:

Autonomy Consent, Rights, Information. Beneficence Outcome. Non-malevolence Do no harm, Outcome. Justice Equity, Fairness.

Fidelity Keeping Faith, Veracity Truth, Communication, Confidentiality Keeping Secrets, Privacy Dignity

Traditional Ethical Issues:

Autonomy Consent, Rights, Information. RespectBeneficence Outcome. Trust, Relationship Non-malevolence Do no harm, Outcome. Trust Justice Equity, Fairness.

Respect

Fidelity Keeping Faith. Trust, Respect, Relationship Veracity Truth, Communication. RelationshipConfidentiality Keeping Secrets. Trust, Relationship Privacy Dignity.

Respect

Respect, Trust and Relationship can be more important than Rules and Guidelines.

Palliative Care promotes ‘Patient-Centred’ or ‘Person-Centred’ Care

Another term suggested by Kitwood, pioneer in dementia care, is

‘Presence’ – Being ‘present’ with a patient means attending with a knowledge, sympathy, interest and concern for the totality of that individual .

It requires an understanding of history, culture, context, relationships, fears, hopes etc.

A reflection on the nature of ‘evidence’ important in care?

Process Theology considers the interdependence of the many parts of creation. At the simplest level: ‘I experience the tree, the tree experiences me’.

It affirms that relationship creates something different from the individual parts separately.

Patient with doctor is different from each apart – the behaviour of both will change.

Understand what it is like being a patient, being subjected to the talk: ‘Hop up here, dear’ (Polly Toynbee: Hospital)

Beatitudes: Arizona care home for dementia. Staff experience being bathed, teeth brushed, sitting in wet diaper. New Yorker May 20, 2013

Pacientia: Suffering (pati = to suffer) is the Latin root from which come many of the words important in care, such as:

Patient, passion, patience

We can recast ‘Patient-centred’ as ‘Suffering-centred’.A healer needs to consider the many latent depths of suffering, and ethical practice will reach into those depths to assist or relieve.

It is unethical to allow unnecessary suffering.

The Fourfold Noble Truth from the Buddhist literature

“The world is full of suffering. Birth is suffering, old age is suffering, sickness and death are sufferings. To meet a man whom one hates is suffering, to be separated from a beloved is suffering, to be vainly struggling to satisfy one’s desires is suffering. In fact life that is not free from desire and passion is always involved with distress”.

Toby Minyintiri Baker is an artist and Ngangkari(traditional healer) in the APY Lands. He uses his healing hands with understandings that are centuries-old, to relieve suffering among his people.

A patient who needs medical attention may also be affected by cultural unease and by the 200 years of suffering inflicted on the Aboriginal communities of Australia since white settlement.

Ngangkari heal in traditional ways, help their people be ready for the mechanics of western medicine

Ethical Issues that are Currently Prominent

Privacy: Face-Book? Twitter? Electronic Health Record (PCEHR); Government surveillance; Submitting to public health programs – opt out?; Trust eroded by recent revelations eg in USA; Protecting the privacy when providers share health

data Tele-health, surveillance of home care by two-way

video; The imperative of what is Possible (but intrusive?)

Consent:Increased requirement for recording consent

– every intervention, each transfusion etc.Fear of Litigation lessens transparency, increases investigations, distorts decisions, focuses on the record, not the patient.

ISSUES RELATED to AGE

Attitudes to ageing relate to values and therefore to ethicsIdeal – to come to death ‘full of years ‘.

Traditional veneration – Chinese, Biblical, Papua – Eroding?Demographic realities: much recognized, little actionChanges in patterns of illness and costs of care for aged Responsibility for one’s own ageing, healthy life-style,

acceptance of change – ethical responsibility?Societal behaviour towards ageing – denial, devaluingPlace of Advance Directives – current enthusiasmEnthusiasm for Assisted Suicide in elderly groups

Confucius:Old age, believe me, is a good and pleasant thing.

Exodus 20:12 Honour thy father and thy mother: that thy days may be long upon the land which the Lord thy God giveth thee.

Traditional veneration – Chinese, Biblical – Eroding?

Pari, a village near to Port Moresby

Ageing in Papua

Igo Ovia – knew the old storiesof the Sacking of TauramaVillage, the songs of the Hiri Voyages,the legend of the tuna fish

Guba Rahobada, knew the ways of the sea and the reefand could direct canoes fromthe land where to lay the net

Legu Tom, at Daugolata, where the tuna came eachyear to be caught, as theLegend prescribed.

Aged Men accorded respect; but no longer, the songs and the knowledge have become irrelevant in the modern city

POPULATION STRUCTURE, Age and sex - Australia - 1990-2010

Population change, Age groups - 1990 to 2010

Demographic realities

Household Expenditure on Health: A Snapshot, 2004-05

Total health expenditure in Australia in 2004–05 was $4,001 per person (AIHW 2007).

Government, both state and federal, funded 68% of

health spending.

Individual out-of-pocket payments accounted for 31%

= > $1,000 each

In 2011, a report showed that 65% of mature age people (aged 50-79) did not purchase health

insurance because they could not afford it.

Chronic conditions cause burdensome out-of-pocket

health care costs. Expectations of healthy old age.

The Public Ethic

Is illness a public responsibility?Medicalization of illness: who owns?Balance in use of resources the aged use a high % of health costs

- their demand = others have less?Public attitudes, values, regarding age

Discounting those with dementiaInequities in the treatment of

minoritiesAdvance directives being promoted,

help in aged care – are they paternalistic?

1984: Governor Richard Lamm: The old have an obligation?

''You've got a duty to die and get out of the way,'' said the 48-year-old Governor. ''Let the other society, our kids, build a reasonable life.''

Arguments for ‘getting out of the way’:You’ve had the best of it, retire gracefullyCosts of me staying alive – waste of $Burden for the familyChronic diseases a cost to the community

Daniel Callahan, 1984 also advocated Setting Limits

Daniel Callahan (Hastings Centre) , Update, 2001

Justice and unconstrained progress are no longer compatible. Rich will not suffer, everyone else will.

Recast medicine’s goals – to more than reduced mortalityPalliative care opens the way for a medicine that better balances life and death, curing and caring.

Preparation for a Healthy Old Age up to the time of death still makes sense. Prevention encourages a good end of a good life. But we need to accept that to live with and die with mortality is a fundamental mark of the human condition.

‘Most Kind and Gentle Death’

A Personal EthicDealing with one’s own ageing

Preparedness for change, Making advance decisionsSharing with family, friendsWillingness to accept help

ORBargaining

Denying changeDemanding: promise never put in nursing homeTransferring assets to avoid tax

Questions and Dilemmas

Who should decide?How ‘informed’ need consent be?Is ‘ethical’ personal or societal?What is allowed in law?

PatientFamily

Doctor Team

Lawyer/court The influence of culture, language, age, competence

Who should decide?

Consent: how ‘informed’?

The former acceptable standard was little more than the level of information offered by a used car salesman explaining the performance of a vehicle. This has been replaced by later judgements eg. Whittaker. Information has to be full, accurate, comprehensive.The use of databases which can churn out lists of drug/procedure side-effects does not equate to provision of information.

The Ethics of Professional Communication:When the Patient Fails to Follow Instruction – whose fault?

“Unfortunately, according to the Institute of Medicine, nearly one half of all adults in the United States -- 90 million people -- have trouble understanding what the doctor tells them about why they are sick and how to comply with their medication regimens.Studies show that among those patients with limited literacy skills – and these may include affluent and educated patients as well as indigent ones - 26% do not understand when is their next appointment; 42% do not understand “take on an empty stomach”; and 78% misinterpret warnings on prescription labels,

Autonomy = self-rule, making one’s own law

To what extent is this purely individual, to what extent collective? Influence of family, local mores,training, prejudice.

Autonomy is always relative to:The cultural and religious settingThe competence of the individualThe effect of a personal decision on othersThe requirements of the larger law

Justice Issues:The balance of Cost and Benefit. Spend more on anti-cancer drugs than any other disease category:What is 2 -3 months survival worth? What quality?Is palliative care better value than chemotherapy?

Medical/Social/Ethical/Economic considerations are claimed to influence PBA recommending a new drug Clinical value, $ value/social value: equity of access

In palliative care, what priority for cancer compared with the needs of the very old, the slow-stream terminal illnesses - eg dementia?

“Man’s consciously lived frailty, individuality and relatedness make the experience of pain,sickness and of death an integral part of his life.The ability to cope with this trio autonomously is fundamental to his health. [Illich 1976]

CONTROL is a central component of health;are we too controlling of our patients?

Ivan Illich

PALLIATIVE CARE IS DIFFERENT?The patient is dying, incompetent, discounted.The patient is weak and uncomfortable, lacking confidenceand clarity.

Autonomy is diminished

Not always clear what will do good, what harm.Much uncertainty re beneficence

Other family considerations may seek precedencebut be confusing; inconsistent; what is ‘just?’

Working in a team introduces some additional concernsWhich secrets ought to be shared, kept private?

Palliative Care Issues with an Ethical Edge

Truth-telling: family ask, “Don’t tell him”

Intervene or no? - I-V, PEG, drainage of effusion.

Nutrition, hydration: I-V, S/C, thirst, Prolonging discomfort?

Treatment of infection: Is it necessary? Eg pneumonia

‘Terminal restlessness’: Will sedation hasten death?

Assessing ‘Pain’ in the unresponsive, eg with dementia

Writing ‘DNR’ orders v. Good Palliative Care

Advance Directives. Care planning.

Prognosis: What will the end be like? How long have I got?

“Falsehood and delusion are allowed in no case whatsoever, but as in the exercise of all virtues, there is an economyof the truth. It is a sort of temperance, by which a man speaks truth with measure, that he may speak it longer.

Truth-telling

House of Commons, London1790

Edmund Burke‘Letters to a fellow MP’, 1796

When a patient with advanceddementia refuses to eat, that person is dying.

Artificial measures to provide nutrition, particularly if offered inuncomfortable ways, are entirely inappropriate.

Dr

Joanne Lynne

PLATO:“To a dying man, food is like poison ” “If he won’t eat he’ll die”: change to:“He is dying, and so he doesn’t need to eat”

‘Pneumonia may well be called the friend of the aged. Taken off by it in an acute, short and not often painful illness, the old man escapes those cold degradations of decay so distressing to himself and his friends’

Sir William Osler: The Principles and Practice of Medicine

Abbey Scale for Assessing Pain in Dementia

Score 1 - 3 for severity of:

Vocalization- whimper, groan, cryingFacial expression - tense, frown, grimace, fearChange in body language - fidget, rock, guardBehavioural change - confused, refusing foodPhysiological State - Temp, pulse, BP, sweatsPhysical Change - torn skin, pressure areas, injuries

Add up to a score out of 18:0-2 None; 3-7 Mild; 8-13 Moderate; 14+ Severe

“Good Palliative Care Orders”An attempt to replace the negative, coded order of ‘DNR’ with an open shared and positive response to a situation in which intrusive and intensive treatment was seen to be unacceptable or inappropriate (futile).

“I have discussed the situation of patient XX with him, with family members PP, YY & ZZ, and with staff members QQ,RR & SS. We have agreed that management shall be directed to the provision of good palliative care, with emphasis on dignity and comfort, and that in the event of further deterioration, resuscitation measures will be inappropriate”. Signed Dr. AA

Perceived difficulties with ‘Euthanasia’ legislationDefinitions: ‘terminal’, ‘unbearable’Diagnosis and management of depressionEstimate of prognosisQuestions of competencePossible pressure from familyIntent of doctorExample of Netherlands, Switzerland, Australia

I expect legislation to continue to be actively pursued. Phillip Nitschke attracts enthusiastic responses from elderly groups who want CONTROL, the right to decide,but may rarely effect their own suicide.

Professional Issues:

Coping with no right answersLiving with uncertainty

Personal Issues being true to self:

‘conscience’Legal issues balancing requests with what is allowed in law - matters of ‘intent’.

EVIDENCE and INTUITION“The Intuitive Mind is a Sacred Gift;

the Rational Mind is a Faithful Servant.

We have honoured the servant, and forgotten the gift.”

Attributed to Albert Einstein

Evidence is given pride of place Where is Intuition Born?What feels ‘Right’?

I pray you, give audience, and hear this matter with reverence; the Summoning of Everyman called it is, that of our lives and endings shows how transitory we be all day. The story saith, “Man, in the beginning look well, and take good heed to the ending, be ye never so gay.Ye think sin in the beginning full sweet, which in the ending causeth thy soul to weep, when that the body lieth in clay.

Does religion still influence behaviour?

Fear?

Triumph?One short sleep past we wake eternallyAnd death shall be no more; Death, Thou shalt die

Laws, Mores and ConscienceIn 1534, Sir Thomas More refused to swear to the Act of Succession and the Oath of Supremacy demanded by the King. His companions urged him to go along with them, and accept the Oath in ‘fellowship’ with them.

In a representation of the time, Sir Thomas replies, “And if I do, and you go to Heaven for following your conscience, and I go to Hell for denying mine, will you visit me, for ‘fellowship’?”

He was committed to the Tower, found guilty of treason and beheaded on July 6, 1535. His final words, were: “the King’s good servant, but God’s first”.

Arthur Kleinman The Illness Narratives: Suffering, Healing and the Human Condition.

Understanding the meaning of the illness to them ‘may liberate sufferers and practitioners from the oppressive iron cage imposed by a too intensely morbid preoccupation with painful bodily processes and a too technically narrow and therefore de-humanizing vision of treatment‘.

Do we get too involved with physical issues?

’

Back to Davis McCaughey: His text was Matthew 6 25. Is not life more than food? And the body more than clothing?

Discomfort is more than diseaseWhat matters to the patient? To the

family?

Deciding: Conscience and Faith

In the same passage from Matthew:Which of you by being anxious can add one cubit to his span of life?

McCaughey’s conclusion asks us not to be anxious in making ethical decisions:

“Receive life from God as a gift, not a threat. Then you will be freed from anxiety. The decisions you make may be difficult, they will certainly not be simple. But they need not make you anxious”.

“For whether you make them right or wrong, or, as is common among men, a mixture of right and wrong, your future and the future of the human race is in the hands of God, the Lord, with whom belongs the issues of life and death”.

Ethics and End-of Life IssuesNurselink, February 21, 2012

Thankyou for listening

madd0064@flinders.edu.au