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  • Over 50% of Australians die in institutions

USA

  • 70% of Americans want to die at home
  • 75% die in medical institutions
  • >30% spend at least 10 days in ICU
  • >30% bankrupt families in the process of dying

Future

  • In the future there will be a rectangular population pyramid --> lots of old people

What we want vs what is done

  • Most people would prefer to die at home
  • But the dying process is medicalised because we call an ambulance when someone is sick --> in ED --> only treat them

Conveyor belt to intensive care

  • Ambulance
  • Emergency department
  • Hospital ward
  • Intensive care
  • System favours an institutionalised technological supported death
  • Inadequate home support systems or motivation
    • It's easier to come into hospital

Some drivers

  • Dying is frightening
  • Lack of community support for the dying
  • Societal expectations (media)
  • Reluctance of medicine to discuss death
  • Specialisation of medicine - but old people have declining function of all their systems - it's the normal part of ageing and dying
  • Difficult to be 100% certain - that someone is going to die soon
  • Because we can, we do
  • “They want everything done”
    • This is awkward because we can't always fix the problem
  • Litigation
  • "Dying" is a medical diagnosis that is over the course of 2-3 days (i.e. imminent death - requires a doctor's signature)

Accuracy of prognosis

  • Doctors are systematically over- optimistic in their prognosis
  • Death is a non-negotiable medical diagnosis, it's not something you ask patients about (i.e. you don't ask "do you want everything done?"), it's something you tell patients about.
  • Nurses are better at predicting dying than doctors

Death

  • No legal definition in the UK
  • Based on opinion of a suitably experienced, registered medical practitioner

Imminent death = dying

  • No legal definition
  • Minutes to days (<5 days)
  • Based on opinion of one or more suitably experienced and registered medical practitioners

Diagnosis of dying

  • Severity of Acute illness
  • Response to Treatment
  • Therapeutic Options
  • Co-morbidities
  • Scores eg APACHE & SAPS

2 Models

  • Individual patient/family choice (USA) - except for the poor
  • Right of health professionals to not deliver futile end-of-life care (Scandinavia)
  • DEATH IS A NON-NEGOTIABLE MEDICAL DIAGNOSIS – although different rates of tissue death
    • We have nothing left to offer, further support is futile
    • There is no hope for any meaningful life
    • Further medical support is perverse and not indicated

Who decides?

  • Autonomy - right to make decisions
  • Beneficence - should benefit
  • Non maleficence - do no harm
  • Distributive justice - equitable distribution of resources
  • Difference in emphasis and passion with which opinions are argued
  • Translating attractive theoretical framework into bedside decision making is hard
  • You need to seek consensus without seeking permission (ie don't ask the family if you can or can't pull the plug)
  • Double effect interventions
    • E.g. morphine's primary aim is to relieve pain but may also hasten death

A good death

  • Free from avoidable distress and suffering for patients, families and care givers.
  • In general accord with patients’ and families’ wishes.
  • And reasonably consistent with clinical, cultural and ethical standards.

Palliative care

  • Community based
  • Cancer orientated
  • Work with conscious patients with prognosis of weeks/months/years

Possible solutions

  • Advanced Care Directives – ‘ifs’ and ‘buts’
  • Medical and nursing education
  • Targeted dying process with support Patient expectations
  • Societal debate
  • Expenditure cap

Do not resuscitate

  • Most cardiac arrest patients die in hospital; only 15% survival rate
    • Half the survivors are dead within 12 months of discharge - in the hospital, it's a terminal event of a chronic illness
  • CPR as an intervention has a very low success rate (except in the community)
    • Portayal on US TV: 77% survival rate (100% on Baywatch)
    • Initially for anaesthesia-induced cardiac arrest - 'miraculous, effective, simple'
    • Now popular belief is that it's universally applicable to death and dying, no matter the cause
  • DNR pretends medicine has something to offer. That we are withholding something from the dying
  • DNR is the basis for the beginning of an honest dialogue about the natural process of death - note CPR is not a particularly effective intervention - the discussion is therefore more about being honest/open about death
  • DNR
    • = Diagnosis of dying
    • = Medicine has no more to offer
    • = Change thrust of care
    • HONESTY AND PALLIATION
    • In hospitals, it's very difficult to die in peace
    • Medical emergency team: Cardiac arrest team --> MET

Seriously ill patient

Definition (Code blue):

  • Airway threatened
  • Breathing: RR <5 or RR >36
  • Circulation: HR <40 or HR >140
    • SBP <90
  • Neurology: sudden fall of GCS by 2 points, repeated or prolonged seizures
  • Any pt you're significantly concerned about
  1. Acute reversible component --> Living safely
  2. DNR - diagnosis of dying --> Not for MET --> Dying safely

Intensive care medicine

*$4000/patient/day

  • Sophisticated monitoring and life support machinery
  • 1:1 nurse:patient
  • 1:4 junior doctor:patient
  • 1:8 specialist doctor:patient
  • Patients DO NOT suddenly die in ICU - we plan the dying process - we plan it by withdrawing or withholding treatment when we think people aren't going to recover

Manipulation of the dying process

  • Death is a transitional process
  • Intensive care
    • Manipulate up - prolonging dying by temporarily supporting some of the dying organs
    • Manipulate down - withdrawal and withholding when no progress is being made
  • Patients in ICU die a carefully orchestrated death

Personal lessons

  • Knowing about different cultures, religions, nationalities, attitudes and beliefs around death
    • 44% of his patients are born outside Australia
  • “He/she is deteriorating, do you want everything done?”
  • “What would you like us to do?”
  • “The relatives want everything done”
    • Intubation
    • Ventilation
    • Dialysis
    • Heart lung transplants
    • Cryogenics
  • Learn to say “WE CAN’T OFFER ANY MORE - YOUR LOVED ONE IS DYING”

FIRST ADVICE

  • This could be a marathon, not a hundred metre dash
  • Look after yourselves
  • Resume normal lives as soon as possible
  • Patient will have even more pressing needs when they leave hospital
  • Sit at bedside of patient and hold/stroke them, rather than look at monitors
    • The reason for coming into hospital is for the relative, not the patient
  • Be comfortable with silences

Use plain speech

  • “This is a very serious situation. We are doing everything possible, but I’m afraid that he/she may die during this illness.”
  • Also ask them what the person was like
  • Also say "we don't think he/she is going to live, but we'll take them up to ICU and monitor them for 24 hours"
  • Avoid making people feel guilty - don't ask them "what would you like us to do"
    • It's not any of our decisions - it's in the hands of the patient - whether their heart/lungs start working again etc
  • People get angry and often blame the system
  • HONESTY
  • TRANSPARENCY
  • Things will change by the minute/hour/day
  • Health care workers will say things in different ways
  • Seeking consensus without asking for permission
  • Tensions in the family = people use serious situations as a weapon to manipulate people
  • Withdraw treatment not care


Some tricks

  • Tell us a little about ____, Non of us got to know her/him.
  • Alleviate guilt
  • Understand anger and blame
  • Consider dying at home
  • Explain laughter by staff in ICU - they're being professional, just there are many patients

==Caring for the dead==

  • See patient in ICU, not morgue
  • Remove all lines, tubes, monitors
  • Remove drugs and machines
  • Situp
  • Wash and comb hair
  • Put hands outside sheets – show wedding ring
  • Close eyes
  • Draw curtains and allow as much time as needed for relatives and ensure seating
  • Pre-prepared envelope with ALL required procedures/forms that now have to be addressed.
  • Send letter of condolence – make contact at 6 months/1 year

Case

  • Heavy smoker
  • Severe heart disease
  • Crippling respiratory restriction --> chair bound
  • Admitted with respiratory failure

2 1⁄2 Weeks

  • Bounced around various specialists – heart, lung, kidneys documenting the extent of their own organ failure
  • Chest x-ray consistent with advanced lung cancer

Bronchoscopy

  • Drowsy --> cardiac arrest
  • Intubated/ventilated
  • Relatives present – had not been informed of his state and demanded further treatment
  • No NFR/NFMET notes

ICU

  • 2 days difficult discussion with relatives
  • Finally died, despite intubation and ventilation

Another case

  • 78 year old man with terminal cancer of the lung with:
    • malignant pleural effusions
    • renal failure
  • Written by relatives and inserted in clinical

notes

    • “If creatinine is decreasing – wants ‘full’ resuscitation”
    • “If creatinine is rising – wants 2 hours of resuscitation”