When Does Prolonging Life Become Prolonging Dying

1
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
• colleen.cartwright_at_scu.edu.au

2
Context

• 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

3
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

4
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
  (N817)
• Qld study 2 (1996) 73 of GPs (N169)
• Qld study 3 (2000) 66 of doctors (N394)
• 73 of nurses (N418)

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Fears and Concerns in the Community

• Cases Reported
• Loved one left hooked up to machines until the
  very end. We couldnt even get close enough to
  give him a hug and say goodbye.
• Mum always said she wouldnt want to be
  resuscitated if her heart stopped, but they
  wouldnt listen.
• I want to make sure that doesnt happen to me

6
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
  messIt just added to her pain. And they gave
  her more chemo as welland 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 didnt know most of the time what
  they were there for or what they were doing they
  usually just said something like Now were just
  taking you down to test you for (whatever) They
  never asked her permission.

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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 wasnt.
• (Wife) First of all he was stubborn when he was
  in hospital he wouldnt eat - he was just
  starving himself. They couldnt 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
  didnt want it.

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Confusion among health professionals over what
is/is not euthanasia.

• Some commonly held beliefs are that euthanasia
  includes
• (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.

9
Defining Euthanasia

• Definition often depends on who is doing the
  defining
• Proponents note that "euthanasia is a compound
  of two Greek words - eu and thanatos - meaning,
  literally, 'a good death'" (Kuhse, 199240).
• Opponents frequently define it as legalised
  killing or the taking of innocent human life
  (Pollard, 1993), sometimes adding "for
  compassionate motives" (Pollard, 199144).

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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., 1986208).
• 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 patients
  request, for what he or she sees as being in
  his/her best interests (i.e. Active Voluntary
  Euthanasia AVE).

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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 patients viewpoint.

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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 untreated

13
Respecting a Patient's Right to Refuse Treatment

• 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)

14
Results of Fear of Legal Consequences

• Inadequate pain management
• Inappropriate use of medical technology
• Poor doctor-patient communication
• Disillusioned fearful patients/families/ carers

15
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.

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Action Considered to be Euthanasia
17
Confusion about the Law
18
Victorian Case - BWV

• Woman in PVS, PEG inserted 8 years ago while
  still somewhat mobile
• 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.

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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 bodys production of natural endorphins that
  ease end stage of life.

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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.

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Conclusion

• 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.