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					When Does “Prolonging Life”
Become “Prolonging Dying”?

   Professor Colleen Cartwright, Director
 Aged Services Learning & Research Centre
         Southern Cross University

 Adjunct Professor, UNSW Medical Faculty
           Rural Clinical School

• Better living conditions/health care have led to
  increased longevity – this is a success story, and it has
  rightly been celebrated as such.
• In addition, rapid technological development has
  allowed people who would have previously died to be
  kept alive for long periods of time, often through the
  use of such things as ventilators and PEG tubes.
• But
• These successes have led to practical, legal & ethical
  issues, in particular around end-of-life care and
  extending the dying process
                 Practical Issues

• An ageing population/more (numbers, not %) of
  older people needing care

• Increased cost of health care – especially for “hi-
  tech” interventions

• Need for an extended aged-care workforce

• Need for more home-based carers, at the same time
  as carers (mostly women) are being asked to stay in
  the workforce longer and prepare for their own old
  age through superannuation
               Legal/Ethical Issues

• Fear among health professionals of legal action
  being taken against them:
   – How concerned are you that legal action could be taken
     against you in the course of performing your normal
     duties? (% somewhat or very concerned):

  Qld study 1 (1995) – 69% of doctors & nurses (N=817)
  Qld study 2 (1996) – 73% of GPs (N=169)
  Qld study 3 (2000) – 66% of doctors (N=394)
                        73% of nurses (N=418)
   Fears and Concerns in the Community

• Cases Reported
  – Loved one “left hooked up to machines until the very
    end. We couldn‟t even get close enough to give him a
    hug and say goodbye”.

  – “Mum always said she wouldn‟t want to be resuscitated
    if her heart stopped, but they wouldn‟t listen”.

  – “I want to make sure that doesn‟t happen to me”
                     Carers’ Stories

• (Husband) Close to the end of her life, “because the cancer was
  attacking the bone and she had bad pain in her hip, they put a
  pin in. And … I wondered why, if they knew she was so
  crook, why did they do that, because it was a terrible mess…It
  just added to her pain. And they gave her more chemo as
  well…and they took numerous X-rays, 3 or 4 a day”.

• (Daughter). “She said that the medical staff were running
  through her room „like a gravy train‟. She didn‟t know most of
  the time what they were there for or what they were doing…
  they usually just said something like „Now we‟re just taking
  you down to test you for (whatever)‟… They never asked her
                  Carers’ Stories -2

• (Husband – who felt that the specialist just could not accept
  “defeat”). “Because of (X – specialist) they were still trying
  to cure her but it was not any point. They were doing
  everything. Everyone was making out that this was going to
  be the answer, when they knew damn well it wasn‟t”.

• (Wife) “First of all he was stubborn when he was in
  hospital; he wouldn‟t eat - he was just starving himself.
  They couldn‟t get him to eat … so they had to force-feed
  him. They put a tube down his nose and then they had to tie
  him in the bed, because he kept pulling it out. He just didn‟t
  want it”.
 Confusion among health professionals over
         what is/is not euthanasia.

• Some commonly held beliefs are that euthanasia
   (a) withholding or withdrawing life support systems that have
     ceased to be effective or that will provide no real benefit to
     the patient;
   (b) giving increasing amounts of needed pain relief which
     may also have the effect of shortening the person's life;

   (c) respecting a patient's right to refuse treatment

• None of these is euthanasia.
              Defining Euthanasia

• Definition often depends on who is doing the
  – Proponents note that "[e]uthanasia is a compound
    of two Greek words - eu and thanatos - meaning,
    literally, 'a good death'" (Kuhse, 1992:40).

  – Opponents frequently define it as legalised killing
    or the taking of innocent human life (Pollard,
    1993), sometimes adding "for compassionate
    motives" (Pollard, 1991:44).
             Definition of Euthanasia

• The World Medical Association defines euthanasia
  as "the deliberate ending of a person's life at his or
  her request, using drugs to accelerate death"
  (Brown et al., 1986:208).

• Definition used in studies by Steinberg et al, 1996a
  & b, 1997; Cartwright et al, 1998 & 2000
   – Euthanasia is a deliberate act intended to cause the death
     of the patient, at that patient‟s request, for what he or she
     sees as being in his/her best interests (i.e. Active
     Voluntary Euthanasia – AVE).
     Withholding/Withdrawing Futile Life-
              Supports Systems
• Used to be called "passive euthanasia”; general
  agreement that that term is unhelpful - it can lead to the
  inappropriate continued use of invasive technology.
• Often it is not prolonging life, it is merely prolonging
  the dying process!
• Removal of futile treatment is good medical practice.
  However, no definition of futility in law; generally
  agreed, when burden outweighs benefits – but “burden”
  and “benefit” should be from patient‟s viewpoint.
       Giving Pain Relief Which May Also
            Shorten the Patient's Life
• Often referred to as "the doctrine of double effect“ - primary
  intention is to relieve pain, secondary, unintentional effect may
  be the hastening of the person's death.
• Accepted by most religious and medical groups, including those
  who strongly oppose euthanasia.
• Even the term "double effect" is problematic and unhelpful,
  particularly in a palliative care situation, as it may lead to
  undertreatment of pain.
• Not giving adequate pain treatment when needed may shorten
  life: patient may suffer complications such as life-threatening
  cramps or severe respiratory problems if severe pain is left
     Respecting a Patient's Right to Refuse

• This is a legal and moral right possessed by every
  competent person, under both common law and, in
  some States/ Territories, under statute law relating to
  assault; also by non-competent patient by AHCD or
  Enduring Guardianship.
• Difficult area for some health professionals to accept,
  especially such things as a person refusing a blood
  transfusion because of religious beliefs. (NB: They
  cannot legally refuse for a child)
Results of Fear of Legal Consequences

•   Inadequate pain management

•   Inappropriate use of medical technology

•   Poor doctor-patient communication

•   Disillusioned & fearful patients/families/
            AMA Code of Ethics

• It is incumbent on doctors to “always bear
  in mind the obligation to preserve life, but
  allow death to occur with dignity and
  comfort where death is deemed to be
  inevitable and where curative treatment
  appears to be futile.”
        Action Considered to be Euthanasia
         STATEMENT                     DRs   Nurses S/Wkers C/ty
Not giving CPR to a terminally ill      6     26      25     44
patient whose heart stops

Not giving CPR to a non-terminally     31     46      36     48
ill patient whose heart stops

Giving large dose of medication to a
patient with primary intention of
ending pain but secondary intention    40     60      57     72
of ending patient‟s life

Withdrawing PEG tube from a non-
competent terminally ill patient who
is unable to swallow food or fluid     25     46      47     63

Switching off the ventilator of a
competent terminally patient who
asks you to do so                      62     80      78     84
                   Confusion about the Law
If a person is being kept alive by a life-support system, such as a
ventilator, should the doctor turn it off …:         (% YES)
                   If…                          Dr   Nurse S/Wkr C/ty
A competent patient asks?                       44    50    62      57
Patient not competent but has made AHCD
asking for the machine to be turned off in
such circumstances?                             81    85    89      75
If person has appointed EG and EG asks?         60    72    74      67
 Can the doctor legally turn off the machine?   70    70    63      42
If no EG but Person Responsible asks?           36    42    42      54
 Can the doctor legally turn off the machine?   29    25    22      20
REGISTRAR TO SPECIALIST: “Doctor, Mrs X has an Advance Directive”
SPECIALIST: “They’re about euthanasia. We don’t use them”.
                 Victorian Case - BWV
• Woman in PVS, PEG inserted 8 years ago while still somewhat
• For last 3 years – in foetal position in nursing home
• All nutrition, hydration, medication inserted through PEG
• She and husband had agreed neither would allow the other to
  linger in such a condition
• Husband applied to be appointed her Guardian
• Public Advocate appointed as Guardian, applied to Supreme
  Court for decision to allow removal of the PEG
• Permission granted – in this case Artificial Nutrition/
  Hydration not palliative care.
          Benefits of PEG Feeding?

• 1999 MEDLINE study (Finucane et al) found
  no evidence that PEG feeding has positive
  outcome re: improved survival, prevention of
  aspiration pneumonia, improved skin integrity,
  quality of life – but found strong evidence of
  negative outcomes, incl. infection, aspiration
  pneumonia, etc.

• Berkey (1998 ) claimed PEG Feeding
  interferes with body‟s production of natural
  endorphins that ease end stage of life.
         Hastings Centre Standards

• 1. No one should, in the modern world, have to live
  longer in the advanced stages of dementia than he
  (sic) would have in the pre-technological era.

• 2. The more advanced the damage of dementia, the
  more legitimate it is to overturn the usual bias in
  favour of treatment.

• 3. Whoever is making the decision has as strong an
  obligation to prevent a painful and degrading death
  as to promote health and life.

• Ignorance of the law and misunderstanding
  by health professionals and community
  members about what is/is not euthanasia has
  the potential to impact on patient autonomy
  and to prolong the dying process for
  terminally ill patients.
• Aiming to extend life is an admirable goal, as
  long as the life that is extended is judged by
  the person whose life it is to be of sufficient
  quality to be of value to that person.

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