Ethics

End of Life Care

Deaths of different kinds

 A ‘good death’: to die peacefully, surrounded by loved ones, in one’s
own bed after a long, healthy, and fulfilling life.
 Death in the past: came sooner, often as a result of acute infection,
childbirth, accident, the progression of an untreated disease …
 Death in the present: comes later, postponed and managed in intensive
medical settings, and often follows one kind of medical decision or
another.

Examples of questions/decisions in EOL settings

 How will I answer the question; am I going to die nurse/doctor?
 Will increasing the pain medication hasten death?
 Should I document a Do Not Attempt Resuscitation Order (DNAR)?
 What should I do if there is no DNAR order?
 How much involvement should this patient and/or family have?
 What will I do if a patient refuses treatment e.g. ventilation,
chemotherapy, medication which I believe would prolong life
 How far do my professional and legal responsibilities extend?
 How will I respond if parents insist on futile treatment?

2 key questions
 Who should decide? Who has the moral and legal authority to make
decisions?
 On what basis do they make their decision? What principles or criteria
should guide them?
Principles of evaluating decisions/ interventions in the dying process
 Beneficence – do good for the patient
 Nonmaleficence – do no harm, protect from harm
 Sanctity/Value of human life – protect and preserve human life
 1 + 2 + 3 inform what are still seen today as the primary aims of
medicine: to restore health and preserve life.
 4. Autonomy – respect patient choice, values, beliefs
 5. Justice – distributive and social justice - equitable treatment; fair
distribution of burdens and opportunities; responsiveness to power
asymmetries

Transforming nature of moral realm

 Principles of doing good and avoiding harm …
o Traditionally exercised in a context of paternalism
o Where the patients’ choices were subordinated to the deciding
power of doctors
o Deemed best qualified to know what served their best interests
(benefit/harm)
 The principle of the sanctity of life is challenged by
o Changes in understanding of what makes human life valuable
 Ethics

 Traditionally, human life has irreducible value

(independently of the individual’s own view of it) because of
the relationship between humanity and the divine e.g.
 Judaeo-Christian tradition (Bible, Genesis): life has an
intrinsic value; each life is unique, on loan, made in the
image of God with an unrepeatable opportunity to praise
God.
 Islamic tradition (Qur’an, Al-An’am, Verse 151): life has
intrinsic value, is made sacred by Allah, is a divine trust,
created to discover God’s work and serve God’s plan

HSE policy, professional codes, laws indicate:

 Doing good/avoiding harm should be exercised in a context of respect
for a patient’s right to participate in and make choices about their own
medical treatment and care
 The patient’s own view of their best interests is given weight
 In sum, increased value is placed on patient autonomy

Emphasis shifting to autonomy and relationship

 An alternative view of the value of life principle sees human life as
profoundly valuable because each human individual is unique
(irreplaceable and incomparable). Human existence is not an end in
itself but a necessary condition for the actualization of human values
and potential.
 Life is devalued, not when a patient refuses medical treatment, but
when the choice of a competent patient (to choose or refuse
treatment) is not respected.
 On this view, human life is a central good, but not always.
 For some individuals, life may not be a benefit but a burden. On this
view, if continued life is worse than no life at all, then allowing to die is
viewed as morally acceptable.

The principle of the sanctity of life is also challenged by

 Advances in technology can prolong and preserve life in conditions
where, in the past, death would have been imminent and inevitable.
o Very ill and dying people can be kept alive, e.g. By ventilators,
peg feeding, CPR
o Can conflict with the principles of doing good and avoiding harm,
and with the physical integrity and dignity of patients

Conditions justifying allowing to die

 Refusal of treatment: The right of competent patients to refuse medical
treatment based on their own view of its benefit/effectiveness/futility is
widely accepted and respected in ethics and law.
 Ethics

o Right of competent patients extended through Advance

Healthcare Directives
 Best Interests Judgement: requires that treatment is not started or it is
stopped, if the burden of treatment (e.g. suffering) may be judged to
outweigh the benefits of such treatment. (more nuanced in Assisted
Decision-Making (Capacity) Act 2015)

Right to refuse
 A relevant person who has attained the age of 18 years and who has
capacity is entitled to refuse treatment for any reason (including a
reason based on his or her religious beliefs) notwithstanding that the
refusal—
 (a) appears to be an unwise decision
 (b) appears not to be based on sound medical principles, or
 (c) may result in his or her death.

AHD in 2015 act

 In relation to a person who has capacity, means an advance expression
made by the person … of his or her will and preferences concerning
treatment decisions that may arise in respect of him or her if he or she
subsequently lacks capacity, and
 In relation to a designated healthcare representative, means the
advance expression referred to in paragraph (a) under which the
representative was designated as such representative

The healthcare representative has one or both of the following powers:

 The power to advise and interpret what the directive-maker’s will and
preferences are regarding treatment as determined by the
representative by reference to the relevant advance healthcare
directive;
 The power to consent to or refuse treatment, up to and including life
sustaining treatment, based on the known will and preferences of the
directive-maker as determined by the representative by reference to
the relevant advance healthcare directive.’

A refusal of treatment set out in an advance healthcare directive shall be

compiled if:
 (a) at the time in question the directive-maker lacks capacity to give
consent to the treatment;
 (b) the treatment to be refused is clearly identified in the directive;
 (c) the circumstances in which the refusal of treatment is intended to
apply are clearly identified in the directive.’
A request for a treatment
 ‘A request for a specific treatment set out in an advance healthcare
directive is not legally binding but shall be taken into consideration
during any decision-making process which relates to treatment for the
 Ethics

directive-maker if that specific treatment is relevant to the medical

condition for which the directive-maker may require treatment.’
 AHD respects negative right of autonomy (strongly) and positive right
of autonomy (moderately)

Where there is ambiguity- consultation, preservation, benefit

 The healthcare professional concerned shall, in an effort to resolve the
ambiguity—
o Consult with the directive-maker’s designated healthcare
representative (if any) or, if there is no designated healthcare
representative, the directive maker’s family and friends, and
o Seek the opinion of a second healthcare professional, and
 If … the ambiguity still has not been resolved, the healthcare
professional shall resolve the ambiguity in favour of the preservation of
the directive-maker’s life.

Best interests judgement

 A judgement made to protect the well-being of someone who lacks all
capacity for competent decision-making and has not left an advance
directive stating preferences
 Well-being = judged by assessing harms and benefits in using different
treatments vs. harms and benefits in withholding treatments from the
reasonable person point of view
 Treatment is not started, or it is stopped if it is:
o ineffective or futile
o excessively burdensome
 = A calculation of risks, costs and benefits

Best interests standards considered

 Lack of capacity is temporary or permanent
 Lucid periods to obtain consent
 Options overall clinical benefit
 Options least restrictive of future choices
 Support involvement
 Previously expressed preferences
 Views of anyone the service user asks to consult
 Views of people who have a close, on-going, personal relationship
 Involve an advocate to support

Patients who lack capacity

 Even in the presence of incapacity, the expressed view of the service
user carries great weight;
 Where patient cannot express an opinion (coma, severe dementia…)
decisions should be made in the person’s best interests;
 ‘It is good practice to inform those close to the service user of planned
interventions and to seek their agreement if possible;’
 Ethics

 Preferences of the patient who lacks capacity to make decision should

in general be respected.

Futility Judgement: A treatment is judged to be ineffective; it cannot

achieve its aim.
 A judgement that a treatment is futile is a judgement that it offers no
prospect of benefit to a patient who is close to death: futile treatment
which will have no effect or next to no effect in keeping a patient alive
is deemed pointless or ineffective.
 It may also be harmful to the patient - thus risking violation of the
principles of beneficence and nonmaleficence.
 Important to distinguish between (1) futility and (2) harm.
o ‘Not offering a treatment because it won’t work is not the same
as not offering it because it won’t work and it is degrading and/or
painful. The latter is (other things being equal) a much stronger
reason for non-treatment.’ (Wilkinson 2002)

Futility
 Is a concept in evolution and its meaning is debated.
 Distinguish between two meanings of futility:
o Physiological futility
 When the goal of an intervention is highly unlikely to be
achieved e.g. administering CPR when successful
resuscitation is 1% probable. Or, when a LPT has been
ineffective in 100 relevantly similar cases.
 Views of determining the probability threshold vary, but
judgements of physiological futility only make sense in
relation to a specified goal e.g.
 ANH for PVS patient may be futile vis a vis aim of restoring
health but not in relation to the goal of prolonging life for
another few days.
o Normative futility
 Treatment is futile if it is highly unlikely to benefit the
patient and does not directly harm the patient.
 Most cases of physiological futility are also normative –
treatment that doesn’t work won’t benefit patients.
 But, normative judgements involve judgments about the
patient’s best interests, physiological judgements don’t.
 Judgements in PVS cases such as Ward of Court (1995)
centre on judgements of normative futility. They are not
arguing that treatment won’t prolong life. The question is,
not will the treatment work, but is being kept alive in the
patient’s best interests?

Some claim that futility is a value judgement

 Futility is not a diagnosis as such, but a value judgement and there
have been suggestions that futility judgments allow the doctors and
 Ethics

the courts to camouflage conflicts of value with the respectability of a

valid clinical decision. This has a particular resonance when one
considers that there is much disagreement about the meaning of
medical futility…futility means different things to different people, who
then argue with one another as if they were talking about the same
thing.’

When families and health professionals disagree

 ‘The concept of medical futility is used in response to concerns of
families who insisted on life-prolonging treatments for their loved ones
while clinicians deemed these treatments to be inappropriate.
Clinicians felt providing futile treatment was cruel while studies of
patients and families consistently stated that such care was valued
and wanted.
 Families and health professionals often disagree, not about the
probability of a treatment working; but about the goals it will serve.

Is some chance better than no chance

 Yes, except when:
o The treatment is harmful
o The quality of life of the patient is so poor (intractable pain,
suffering, distress) that death is preferable
o The treatment is not an effective use of resources
 All three reasons are controversial

Who defines futility

 Clinicians? No consensus on probabilities
 Ethics committees/hospitals (e.g. US/UK)? No consensus
 But, judgements are unavoidable
 Negotiation at the bedside/ongoing communication

Futility arguments prompt us to think about

 The goal of treatment (Prevent death? Return to health? Improve
quality of life? The claim of futility is made relative to what goal?)
 The likelihood of a particular treatment achieving the goal (e.g.
surgery, dialysis, intubation)
 The level of certainty that the action will fail to achieve the goal
 The risks, costs and benefits to the patient of the treatment v.
alternatives
 The expectations, beliefs, needs, wishes, values of the patient

Palliative care
 Is an approach which improves quality of life of patients and their
families facing life-threatening illnesses, through the prevention and
relief of suffering by means of early identification and impeccable
 Ethics

assessment and treatment of pain and other problems, physical,

psychosocial and spiritual.
 Its goal is to achieve the best QOL available to the patient by relieving
suffering and controlling pain and other symptoms occurring with the
particular illness of the patient.

Ethical justifications for providing the pain relief

 Unambiguously and ‘imminently dying’ and the relief of pain is a widely
acknowledged moral good to aim at even while recognising the risk of
hastening death.
 Consent is given
 No desire to die
 Adequate dosage to relieve this pain
Palliative treatment relies on concepts of adequacy and proportionality
 So a particular treatment (type of med. and dosage) is ethically
justified when and if:
o It is adequate for the task with this particular patient
o It is proportionate in its effect to the symptoms this particular
patient is experiencing
o If the appropriate aim is to stabilize the patient on a regime that
keeps them comfortable with minimum side-effects
o If a patient experiences pain, while taking it, then the aim is to
increase the dose progressively until the patient’s pain is relieved
(dose titration).
o Even a large (and small) dosage can be proportionate to a
particular patient’s pain experience.

Can we always be clear and certain about our intentions? NO

 The lack of clear and uncomplicated intentions does not mean that a
clinician aims at the death of a patient – committing euthanasia.
 The crux of the difference between alleviating suffering and euthanasia
lies in the intention behind the act and use of appropriate and
proportionate means consistent with that intention.
 Even if it were granted that, on a very rare occasion, the medication to
relieve intractable symptoms has the foreseeable risk of hastening
death, ethicists generally agree that taking such a risk is justified if the
dying patient consents to it; its purpose is to relieve pain; and the
dosage is adequate and proportionate to ensuring that relief.

Palliative sedation
 “Palliative sedation is the monitored use of medications intended to
induce a state of decreased or absent awareness (unconsciousness) in
order to relieve the burden of otherwise intractable suffering in a
manner that is ethically acceptable to the patient, family and
healthcare providers”
o International palliative care associations, including the Irish
Association for Palliative Care (IAPC) (2011), all justify the use of
 Ethics

palliative sedation for the treatment of refractory physiological

symptoms as well as, in some cases, for existential, spiritual,
emotional or psychological distress.
o A refractory symptom is any symptom which cannot be
adequately controlled in spite of every tolerable effort to provide
relief within an acceptable time frame without consciousness
being compromised.

Ethical challenges
 The unconscious patient is unable to eat and drink and this prompts a
further decision about the provision of ANH.
o But, we can distinguish between the decision to administer PS
and the decision to withhold or withdraw ANH and other life
prolonging therapies.
o In many cases, the patient will have ceased ANH before sedation
is applied.
o Where life-prolonging measures are withheld; it is viewed as
acceptable as long as certain criteria are met e.g. that the
patient has refused them; that they are futile; that they intensify
the patient’s suffering; that they are too stressful and
burdensome for the patient’s system to bear

Is palliative sedation a form of physician assisted suicide (PAS) or ‘slow

euthanasia’?
 Key differences:
o Intent:
 To relieve unmanageable symptoms v. Death of patient
o Means:
 Select drugs and titrate dosages to control symptoms v.
 Select lethal drugs and dosages to stop breathing and heart
beating
o Outcome:
 Were the drugs to have a life-shortening effect this would
be considered an adverse outcome v.
 If the patient continued to breathe, the intervention would
be considered unsuccessful

Do not attempt resuscitation (DNAR)

 Cardiopulmonary resuscitation (CPR), including chest compressions,
defibrillation (with electric shocks), the injection of drugs and
ventilation of the lungs, is an important and potentially life- saving
intervention for victims of cardiorespiratory arrest.
 Positive developments in recent years that have resulted in improved
outcomes include CPR training for the public and the widespread
availability of automated external defibrillation
 However, it is important that the overall survival rate after CPR
is relatively low:
 Ethics

o following cardiorespiratory arrest in a hospital the chances of

surviving to hospital discharge are about 13-20%;
o following out of hospital cardiorespiratory arrest, the survival
rate is lower.
 The success rate is particularly poor in those with severe acute
non-cardiac illness or those with multiple chronic illnesses.
 There is a risk that the individual may be left with long-term
brain damage and disability, especially if there is delay between
cardiorespiratory arrest and the initiation of the CPR.
 CPR can be a relatively traumatic procedure and in extreme
cases adverse effects may include bone fractures and organ rupture.
 Scope of DNAR Orders
o A decision not to attempt CPR applies only to CPR. It does
not apply to any other aspect of treatment and all other
treatments and care that are appropriate for the individual
should continue.
o If a decision is made to restrict the nature or extent of
CPR, this should be carefully documented and communicated
effectively to all members of the healthcare team caring for the
individual.
 General Principles
o Need for individual decision making
o Involving the individual in discussion regarding CPR
o Involving family and friends in discussions regarding CPR
o Assessing decision-making capacity
o Provision of information
o Decision-making regarding CPR and DNAR orders.

 When should CPR and DNAR decisions be considered?

o Cardiorespiratory arrest is considered unlikely
o Cardiorespiratory arrest, as a terminal event, is considered
inevitable
o Cardiorespiratory arrest is considered possible or likely.
 Presumption in favour of providing CPR
o As a general rule, if no advance decision not to perform
CPR has been made, and the wishes of the individual are
unknown and cannot be ascertained, there is a presumption
in favour of providing CPR, and healthcare professionals
should make all appropriate efforts to resuscitate him/her.
o In these circumstances, the extent and/or duration of the CPR
attempt should be based on the clinical circumstances of the
arrest, the progress of the resuscitation attempt and
balancing the risks and benefits of continuing CPR.
 Balancing the benefits and risks of providing CPR
o The decision to use any treatment, including CPR, should be
based on the balance of risks and benefits to the person
 Ethics

receiving the treatment and on that individual's own

preferences and values.
o When discussing CPR with individuals, it is important to
ensure that they understand the relevant benefits and risks.
o While acknowledging the uncertainty inherent in many
medical predictions, healthcare professionals still have an
obligation to provide an opinion, based on their expertise.
 Respecting an individual’s right to refuse CPR
 When the balance between the risk and benefit is uncertain.
 When the risks outweigh the benefits
 When an individual does not want to discuss CPR and DNAR
 Documenting and communicating CPR/DNAR decisions
 Reviewing DNAR Orders.

An ethical approach to EOL care

 Accepts that decisions are complex and contested
 Assumes that moral expertise is communal and that meaning arises
out of dialogue and context
 Purposefully seeks out the grey in questions and concerns
 Promotes moral progress more than moral truth
 Offers ways of systematically considering our moral intuitions
 Offers tools for thinking about difficult problems and cases
 Suggests ways of progressing/resolving problems and disagreements

Age of instant solutions but ethical problems in end-of-life care are not
easy to resolve
 Involve value-laden opinions and strong personal emotional responses
 Traditionally, the answers seemed clearer, simpler, ‘true’ or ‘false’ but
 Resolving ethical problems as definitively is not possible
 Appeals to authority and ethical values of simple obedience and loyalty
 Replaced by other ethical values: good judgement, collaborative
decision-making and accountability
 Ethics

Euthanasia + Physician Assisted Suicide

 "The WMA reiterates its strong commitment to the principles of

medical ethics and that utmost respect has to be maintained for human
life. Therefore, the WMA is firmly opposed to euthanasia and physician-
assisted suicide.”
 EUTHANASIA:
o A physician deliberately administers a lethal substance or carries
out an intervention to cause the death of a patient.
 Voluntary euthanasia: with the consent of the patient who
has capacity
 Involuntary euthanasia: when the patient has the capacity
to consent but does not do so
 Non-voluntary euthanasia: when the patient is unable to
consent
 PHYSCIAN ASSISTED SUICIDE
o When a physician deliberately enables a patient to end his or her
own life by prescribing or providing medical substances with the
intent to bring about death, at the voluntary request of a patient
with decision-making capacity.

Arguments FOR Physician Assisted Suicide + Euthanasia

 TECHNOLOGY: it prolongs life & denies patients a death with dignity.
 AUTONOMY: People should have free choice, including how to die.
 MERCY: Patients need the assistance of a physician to alleviate
suffering and bring about death.
 THE STATE: Death is a private matter; the state should not have laws
that interfere with the private lives of citizens.
 THE LAW already tolerates other ways in which a person's life may be
shortened in healthcare contexts.

Arguments AGAINST Physician Assisted Suicide + Euthanasia

 Does not address urgent needs of the dying, including emotional,
psychological, spiritual...
 Threatens those with disabilities & jeopardizes the suicidal
 Undermines a foundational principle of law and justice i.e., that it is
wrong to intentionally kill another.
 Undermines a key principle of medical ethics, i.e. to respect human life
and do no harm.
 Undermines a key principle of palliative care, i.e. it ‘intends neither to
hasten nor to postpone death.’

The principle of double effect (PDE)

 Ethics

 ACKNOWLEDGES that there are morally complex cases in which one

cannot achieve a particular desired good result without also bringing
about some clear bad result.
 ATTEMPTS TO DISTINGUISH
between permissible and impermissible
procedures.

PDE 4 conditions regarding moral

permissibility
 NATURE OF THE ACT: The act must be
morally good in itself.
 INTENTION OF THE AGENT: The intention is solely to produce the good
effect, though the possible bad effect may be foreseen
 DISTINCTION BETWEEN MEANS & EFFECTS: The bad effect is not the
means to the good effect.
 PROPORTIONALITY: The good effect must outweigh the bad effect &
there must be a sufficiently grave reason to permit the bad effect.
 Ethics

Methods of Ethical Reasoning

 Ethics

Organ Procurement and Donation

 Organ donation takes healthy organs and tissues from one person for
transplantation into another, in order to replace diseased and non-
functioning organs.
 Most donated organs come from people who die while on life support
following a severe brain injury – brain death.
 In some countries, organs are also taken from non-heart-beating donors
(NHBD) or patients who have died a cardiac death (irreversible loss of
heart and lung function).
 Organs can also be donated by the living.

Irish transplant system

 There are three transplant centres in Ireland, Beaumont Hospital (renal
and pancreatic transplantation), St. Vincent’s Hospital (liver transplant
programme) and the Mater Hospital (Heart and Lung transplant
programme. Children are referred to the UK for heart, lung and liver
transplants.
 Organ Donation and Transplant Ireland (ODTI) operating under the
auspices of HSE.
 Ireland currently operates an opt-in system in which individuals can
express a wish to be an organ donor by carrying a donor card/driving
licence.
 No national organ donor register operating in Ireland.
 Relatives always asked for their consent and even in cases where an
individual does carry a donor card, the donation will not proceed with
consent of the next of kin

Organ shortages
 The most significant problem affecting transplant programs today is
the shortage of suitable organs. The number of deceased donors has
remained fairly static over the last decade i.e. road safety measures
 2016: approx. 550 people on the organ transplant list, 460 of those
awaiting kidneys
 Predicated increase from 2000 people on dialysis to 3000 by 2026 ( €50
million/year)
 Ethics

Rationing of organs
 Donor organs are a national resource
 Patients selected if expected survival in
absence of transplant is less than 12
months
 Expectation that those transplanted
should have survival probability of more
than 50% at 5 years, with quality of life acceptable to patient

Process of selection for transplant

 Medical tests
 Psychological assessment
 Multi-disciplinary meeting
 Allocated according to medical urgency, time on waiting list, blood
type, body size
 National waiting list for elective and for emergency transplantation
 Donors cannot select recipients (unconditional donation)
 In Ireland, transplantation is provided free of charge to all recipients,
irrespective of health insurance or medical card

Increasing the donor pool: Scientific Developments

 Xenotransplantation
o 2002:with the cloning of α -gal-knockout pigs minimised with
hyperacute rejection (HAR) of xenografts
o June 2016: Researchers in California have created human-pig
chimeric embryos as part of a project to grow human organs for
transplantation
o Potential transmission of pathogens (retroviruses) from the
xenograft donor to the human receipt and subsequently to the
community at large.
o Breaching of normally inviolate boundaries “unnaturalness”
 Regenerative Medicine
o Attempts to generate organs using tissue engineering with
autologous cells, embryonic stem cells, induced pluripotent stem
cells, 3D organ printing
o Main challenge is vascularisation
 Policy Developments
o Abandon the dead donor rule
o Donation after circulatory death
o Opt-out Model (presumed consent)
o Mandated Choice
o Required Request
o Solidarity Model
o Public Attitudes
o Increase Living Donors

Definition of brain dead

 Ethics

 Prior to the 1960’s, death was principally diagnosed using cardio-

pulmonary criteria (irreversible cessation of breathing and heartbeat).
 Mechanical ventilation caused a re-examination of death which
focussed on neurological criteria (lack of EEG activity). In 1963, first
transplantation using a heart-beating, brain-dead donor was performed.
 In 1968, a Harvard ad hoc committee proposed a new set of criteria for
death based on irreversible coma with no discernible central nervous
system activity.
 US President’s Commission on the Study of Ethics in Medicine (1979-
1982) The commission framed a uniform definition of death that
included both the traditional cardiopulmonary and the brain criteria:
“An individual who has sustained either (1) irreversible cessation of
circulatory and respiratory function, or (2) irreversible cessation of all
functions of the entire brain, including the brain stem, is dead”. The
report provided a more extensive and precise set of clinical criteria to
identify the irreversible cessation of brain stem function.
 Academy of Medical Royal Colleges in the UK states death should be
regarded as 'the irreversible loss of the capacity for consciousness,
combined with irreversible loss of capacity to breathe' and explicitly
states 'irreversible cessation of the integrative function of the brain-
stem equates with the death of the individual'. (2013)
 As in the UK, there is no statutory definition of death in Ireland and the
diagnosis of brainstem death is made according to the UK Academy of
Medical Royal Colleges Code of Practice

Dead donor rule

 Concerns that whole brain/brain stem death does not constitute a
biologically plausible definition of death. Regulation of many bodily
functions, including but not limited to haematopoiesis, glucose
metabolism, wound healing and maintenance of body temperature
continue to function in brain dead patients.
 Instead of tinkering with definitions of death, Miller and Truog have
advocated abandoning the “dead donor” rule. Would allow removal of
organs from patients suffering traumatic brain injury who are close to
death but not yet dead.
 Honesty is the best policy and that greater transparency about the
nature and circumstances for organ donation would benefit patients
and the public. Others argue that abandoning the dead donor rule
would be a counterproductive measure as it would undermine public
confidence and thus reduce, rather than increase the supply of organs.

Donation after circulatory death

 Donation after circulatory death (DCD) re-emerged as an important
strategy for securing viable organs for transplantation.
 Maastricht classification Controlled DCD (Categories III/IV); patients
from whom artificial life support is being withdrawn; Uncontrolled DCD
occurs when patients unexpectedly die as a result of cardiac arrest or
 Ethics

following unsuccessful cardio-pulmonary resuscitation (Categories I /II

and V).
 “No touch time” varies from 2 to 10 minutes. Restoration or
spontaneous resumption of a heartbeat in a patient who has been
asystolic for a period of 10 minutes is exceedingly unlikely and after
this period the process of irreversible brain death has begun, thereby
satisfying both the neurological and cardio-pulmonary criteria for
declaring death.
 Anticoagulants and vasodilators are routinely administered to ensure
to organ preservation, in controlled DCD can ask for family consent, not
so for uncontrolled DCD.

Opt out model (presumed consent)

 Unless the deceased has expressed a wish in life not to be an organ
donor then consent will be assumed.
 Programme for Government 2011/2016 contains a commitment to
change the process of organ donation to an opt-out system for organ
transplantation, rather than the current opt-in system.
 Countries vary in how legislation is applied in practice and the terms
“hard” and “soft” have been used to characterise the weight given to
relative’s wishes.
 Pros
o It would increase the pool of donors
o Strong utilitarian arguments to save lives
o Takes pressure off families
o Increases autonomy of donor
o Same choice, just changes default position
o Actually fulfills many people’s wishes
 Cons
o Reduces autonomy if don’t actively opt-out
o Vulnerable people would not opt-out
o Changes nature of ‘gift’ of organ donation
o May induce backlash and reduce donations
o Mixed evidence about whether it would increase pool

Mandated choice
 Competent adults required to inform a relevant authority whether or
not they wish to donate their organs after their death .
 mandated choice can help ensure that personal preferences will be
known and respected. Less traumatic for relatives.
 Compelling people to choose undermines their autonomy; mandated
choice is coercive and constitutes an invasion of personal privacy

Required request
 Ethics

 Hospitals to ensure that health care professionals approach the

families of eligible donors to give them the opportunity to donate.
 Can be a reluctance of behalf of health care professionals to approach
grieving families.
 Manner in which families are approached and indeed by whom they are
approached makes a difference to respect to willingness to donate.
Importance of training.

Solidarity Model
 Operates on the basis of giving priority to those who need an organ if
they have previously consented to becoming an organ donor in the
event of their death.
 highest priority to be afforded to those who have already served as
living donors should their second kidney fail
 Morally ambiguous to allocate transplantation on the basis of anything
other than medical need?
 Unjust to those who cannot donate on medical grounds; or simply don’t
wish to, other ways to show solidarity?

Public attitudes
 Research consistently documents positive attitudes amongst the
general public toward organ donation. The relationship between
attitudes and behaviours i.e. actual donation is generally quite weak.
 Prime determinant of next-of-kin decisions is a desire to execute the
known or inferred wishes of the deceased.
 Most significant factors in determining consent/refusal rates are the
specific timing of the request, the setting in which it is made, and the
approach and skill of the individual making the request.
 Know less about motives for not wishing to donate.
o Distrust of the health care system
o Misperceptions
o Media
o Bodily integrity

Living organ donation

 Removal of organ or part of organ from a healthy person (the living
donor) and transplanting to person with organ failure.
 Organs that can be harvested from live donor include kidney, liver
segment, lung lobe and small intestine
o Better condition of the donor organ, better outcome
o Motivation for donation is altruistic
 Ethical Concerns
o Informed Consent: risk to donor and no direct therapeutic benefit
to donor (first do no harm). Information on risks to donor, as well
as the benefits and alternatives available to the recipient.
o Voluntariness: potential for coercion amongst family members,
when pool expanded to acquaintances and strangers, fears of
 Ethics

commercialisation and exploitation of donors and recipients. Use

of Donor Advocates.

Living organ donation- donor outcomes

 Evidence to date suggest that living kidney donors show similar if not
better long term survival as compared to control groups (healthier
cohort, follow-up)
 Development of end stage kidney disease (ESKD) by living kidney
donors is relatively rare but data emerging that it may be more
significant than previously thought.
 Donor wellbeing following recovery from the immediate post-operative
effects of donation, tends to meet or even exceed that experienced by
the general population. Clemens KK et al. Am J of Transplant.
2006;6(12):2965-2977. However up to a quarter of living donors suffer
clinically significant psychological distress post-transplant.

Regulation of living organ donation

 Article 19 of the CoE Convention on Biomedicine states ' Removal of
organs from a living person for transplantation purposes may be carried
out solely for the therapeutic benefit of the recipient and where there
is no suitable organ or tissue available from a deceased person and no
other alternative therapeutic method of comparable effectiveness'.
 WHO guiding principles on organ transplantation: living organ donation
is permitted when a deceased donor is not available and in general
living donors should be genetically related to the recipient.
 In The Netherlands, Cyprus and Bulgaria, kidney transplants from living
donations outstrip the number of transplants being performed with
organs from deceased donors.
 Ireland does not have any national legislation regulating living
donation. National Living Donor Ethics Committee.

Living donation minors

 Has been argued donation from a minor strains the concept of
voluntarism which forms the ethical bedrock of live donation.
 Described a sharp edge of the utilitarianism, obliging minors to donate
organs when competent adults could not be similarly compelled.
 Situations in which potential emotional and psychological benefits
from donation. The Live Organ Donor Consensus Group minors can be
living donors but only in rare and exceptional circumstances.
o The potential donor and recipient have to be both highly likely to
benefit,
o The surgical risk for the donor should be extremely low, all other
opportunities for transplantation should have been exhausted,
o There should be no potential adult donor available,
o Donation of a cadaveric organ is highly unlikely
o The minor should agree to donate, free of any coercion
 Ethics

 UK, Sweden, Belgium (liver lobes) and Norway only European countries
will allow for minors to act as living donors. Draft Human Tissue Act
2011 (Ireland), allowable in exceptional cases with High Court
approval.

Living donation incapacitated adults

 Unease that vulnerable, incapacitated adults could be exploited; their
interests sacrificed in the interest of others.
 Article 14(1) of the additional protocol to the Convention on Human
Rights and Biomedicine (2002) states 'no organ or tissue removal may
be carried out on a person who does not have the capacity to consent'.
 Non-binding preamble of the EU Directive on Organ Donation and
Transplantation 2010/53/EU states that the potential living donor must
be able to take an independent decision.
 Austria, Sweden, Belgium and the UK do allow living organ donation by
incapacitated adults. Typically the restrictions and requirements are
similar to those applicable to minors. Assisted Decision Making Act
Section 3(3)a where donor lacks capacity decision must be made by
High Court.
 Strunk v Strunk 336 (State of Kentucky Court of Appeals) permitted an
adult with serious learning difficulties to donate his kidney to his adult
sibling brother. Court adopted the position that the incapacitated
adult’s well-being would be jeopardised to a greater extent by the loss
of his brother than by the donation of his kidney.

Unspecified donation
 Volunteer donates an organ to a recipient that they do not know and
did not select (also referred to as anonymous, altruistic, stranger or
good-Samaritan living donation).
 Concerns donors may be motivated by mental illness or material gain
rather than by purely altruistic motives. Others argue they are hero's
akin to strangers who save people from drowning, fires etc
 A spectrum of motivations identified in living unspecified donors;
altruism, compassion, a desire for media attention, approval from
peers, atonement, redemption, financial remuneration
 Very little data on long-term psychological effects of unspecified
donation, scrupulous screening of potential donors, cooling off period
and anonymity of parties maintained.

Solicitation for organs

 Patient advertises for an organ publicly on television, through print or
social media sites.
 Two central objections to solicitation : potential for financial
exploitation and the inequitable allocation of organs. Organs do not
necessarily go to the best immunological match, to the patient with the
most urgent need, or to those who have waited longest.
 Ethics

 Some argue it undermines the transplant system while others point out
that no-one is disadvantaged by this type of donation as everyone
moves up this list due to the availability of an organ.
 What about if recipient is chosen by the donor on the basis of race,
religion or ethnic group? Family of a brain dead Florida man (allegedly
a Klu Klux Klan sympathiser) agreed to donate their son’s organs but
only if they were transplanted to a white recipient.

Organ donation- the gift of life

 Altruism and gift giving are guiding principles of organ donation and
transplantation.
 Terms are often used interchangeably, but have different meanings,
albeit they are closely linked.
 “an altruistic basis for donation helps underpin a communal, and
collective, approach to the provision of bodily material for others'
needs, where generosity and compassion are valued”
 Gift-giving; obligations within a community require that individuals are
required to give, receive and to reciprocate

Organ commercialization
 Position of UN, Council of Europe, EU, WHO and WMA is that organs
may be donated, but they should not be sold, despite the shortfall in
organs for donation. Council of Europe Additional Protocol concerning
the Transplantation of Organs and Tissues of Human Origin. Article 21
“The human body and its parts shall not, as such, give rise to financial
gain or comparable advantage”. Under the EU Directive 2010/53/EU,
organ donation must be voluntary and unpaid. Compensation may be
paid to refund the expenses and loss of income related to the donation.
This must avoid any financial incentive. Member states are prohibited
from advertising the need for, or availability of, organs.
 More recently, this premise has been challenged. Extensive discussion
in the literature regarding the pros and cons of compensated organ
donation/organ selling.

Incentivised organ donation

 Reimbursement of living donors uncontroversial, provision of incentives
has met with strong opposition.
 Remuneration suggested in the form of financial or non-financial
rewards, includes non-taxable lump sum payments, health/life
insurance, travel and social benefits (including subsidising housing
costs, scholarships). This monetary or non-monetary form of
acknowledgement is often referred to as rewarded gifting.
 Nuffield Council in UK recommended that the NHS should cover funeral
expenses if someone who has signed the Organ Donor Register dies in
circumstances where their organs can be donated to others. “ Paying
for the funerals of organ donors would be ethically justified – no harm
 Ethics

can come to the donor, and it would be a form of recognition from

society”.
 Is there a difference between financial or non-financial rewards?

Proposed ethical market in organs

 Market should be confined to a self-governing geopolitical area, eg EU
or USA or nation state. Only citizens resident within that state could
sell into the system, and would be eligible to receive organs, if needed,
at a later time,
 only one purchaser (eg. NHS) which would purchase all organs and
distribute according to some principle of medical priority or need,
 No direct sale or exploitation of low income countries and their
populations,
 Provenance of all organs would have to be known, with controls and
penalties to prevent abuse of the system,
 Price would need to be high to attract potential donors to marketplace.

Iranian model
 In 1988, Iran introduced a state sponsored compensated renal
transplantation program. Only country in the world without a significant
kidney transplant waiting list.
 Transplants performed in university hospitals. Donors receive a fixed
monetary payment of approximately €1000 and one year of limited
health-insurance coverage from the government. In addition kidney
recipients pay donors between €2,000 and €4,000 (charitable donations
for those who cannot afford. No middlemen.
 Non-Iranian nationals are prohibited from receiving a kidney from an
Iranian living unrelated donor and non-national are also not allowed to
act as donors.
 There is no long term follow-up of organ vendors and donors do not
maintain anonymity (possible private transactions).
 The majority of kidney vendors come from lower income backgrounds
with 60% living below the poverty line.

Organ sales: who owns your body

 Central to the ethical debate regarding whether or not it is acceptable
to sell organs relates to the question of ownership of our bodies
o Immanuel Kant: morally wrong and degrading to use the body as
an instrument, commodification of the body and reduce the
individual to the status of a mere object.
o Cartesian Dualism (René Descartes): The body and the person’s
“self” are separate and distinct. Because the mind is dominant,
the body can be used as a tool to further a person’s wants and
needs.
o Civil Libertarian (John Locke):“Every man has a property in his
own person”. Lockean philosophy implies that the body is an
extension of our own personal property and that, so long as no
 Ethics

harm is caused to anyone else, people can do what the wish with
it, this include the freedom to sell parts of one’s body.

Commodification and dignity

 Commercialisation of the body, places a market value on people and
their body parts. This instrumentalization of the human body
undermines human dignity. People may be regarded as “repositories of
organs and other bodily bits and pieces” demeaning not only individual
humanity but society’s humanity
 "By putting a price on organs, we would cease to view ourselves as
moral agents with dignity and instead see ourselves as repositories of
bits and pieces which could be bought and sold. The commodification
of people would demean not only their humanity as an individual, but
the humanity of all of us". Cynthia Cohen
 Any act done to save the life of or alleviate the suffering of another
human being cannot be construed as contrary to human dignity. The
presence of a monetary incentive does not alter the basic content of
the act.
 Rewards/Incentives, in cash or kind, are routinely given by society, do
not consider that giving or accepting of the reward commodifies the
recipient or diminishes dignity.
 The concept of human dignity appears to be selectively applied
depending upon the nature of the human tissue in question

Coercion and exploitation

 Financial incentives can adversely influence the voluntariness of
people’s donations and result in the potential exploitation of people,
particularly those from lower socio-economic groups.
 The over-whelming majority of kidney vendors come from low income
families in low income countries. Are individuals in a position to
exercise their autonomy in providing their genuine consent to
participate in the organ donation process?
 People take risks for money, judging that benefits to them and their
families outweigh the risks. Denying an individual their right to self-
determination on the basis of their socio-economic status is an overly
paternalistic approach.
 Average family income declined by one third after donation and the
number of participants living below the poverty line increased post-
donation

Organ sales and social harms

 Commercialisation of organs will likely undermine the gift relationship
and will “crowd out” altruism. Incentives have been shown to have
negative effects on prosocial behaviours such as blood donation.
 Ethics

 Alternatively “The mere fact that an object can be bought and sold
need not destroy our ability to transfer that object as a gift” (Resnik)
 Commercialisation will likely undermine public trust in transplantation
system. Public show a low level of acceptance for payment for organs
in living donation. Preference is for removal of disincentives or
expressions of reciprocity.

Organ trafficking
 Notwithstanding, the legal prohibition on organ sales, there exists a
vibrant black market for organs. Estimated 5-10% of transplanted
kidneys worldwide have been trafficked.
 As observed by Johnathan Ratel, a European Union special
prosecutor," thanks to the global financial crisis, organ trafficking is a
growth industry".
 The circulation of trafficked kidneys follows well established routes
'from South to North, from East to West, from poorer to more affluent
bodies, from black and brown bodies to white ones, and from female to
male or from poor, low status men to more affluent men'. Nancy
Scheper-Hughes

Declaration of istanbul
 Summit convened in Istanbul from 30 April 30 to 1 May 2008 by The
Transplantation Society (TTS) and the International Society of
Nephrology (ISN).
 Consensus Statement “Organ trafficking and transplant tourism violate
the principles of equity, justice and respect for human dignity and
should be prohibited. Because transplant commercialism targets
impoverished and otherwise vulnerable donors, it leads inexorably to
inequity and injustice…”
 What can be done:
o Problem of organ shortage: present realistic alternatives to
desperate patients
o Increase living donation and establish robust deceased donor
programs

Council of Europe convention against trafficking in human organs 2014:

article 21
 Each Party shall take the necessary legislative and other measures to
ensure:
o The existence of a transparent domestic system for the
transplantation of human organs;
o Equitable access to transplantation services for patients;
o Adequate collection, analysis and exchange of information
related to the offences covered by this convention in co-
operation between all relevant authorities.
 Ethics

 With the aim of preventing and combating trafficking in human organs,

each party shall take measures, as appropriate:
o To provide information or strengthen training for healthcare
professionals and relevant officials in the prevention of and
combat against trafficking in human organs;
o To promote awareness-raising campaigns addressed to the
general public about the unlawfulness and dangers of trafficking
in human organs.
 Aim of Convention is to prevent and combat the trafficking in human
organs by providing for the criminalisation of certain acts; who is
punishable?

Regulation of organ donation and transplantation

 2010 WHO Guiding Principles on human cell, tissue and organ
transplantation. The principles were accompanied by resolution WHA
63.22 emphasis placed on the voluntary non-remunerated donation of
organs for transplant and a commitment to protect vulnerable persons
against human trafficking.
 The Convention for the Protection of Human Rights and Dignity of the
Human Being with Regard to the Applications of Biology and Medicine:
Human Rights and Biomedicine. Articles 19 and 20 of the Convention
deal with organ and tissue removal from living donors for
transplantation purposes. In 2002, an Additional Protocol to the
Convention concerning Transplantation of Organs and Tissues of
Human Origin
 In July 2010 the European Parliament and the Council of Europe
adopted Directive 2010/53/EU Standards of Quality and Safety of Human
Organs intended for Transplantation.
 No Domestic Legislation Draft Human Tissue Bill 2009

2010/53/EU Directive
 EU directive on quality and safety of organs intended for
transplantation 2010/53/EU was adopted by the European Parliament
and the Council on 7 July 2010 . Transposed into Irish legislation by S.I.
No. 325 of 2012 and S.I. No. 198 of 2014.
 States - available organs should be able to cross borders without
unnecessary problems and delays. Directive acknowledges that several
models of consent to donation coexist in the EU and does not specify
the adoption of any particular model.
 Under the directive, organ donation must be voluntary and unpaid.
Compensation may be paid to refund the expenses and loss of income
related to the donation. This must avoid any financial incentive.
Member states are prohibited from advertising the need for, or
availability of, organs.
 The Health Products Regulatory Authority (HPRA) and the Health
Service Executive (HSE) have been appointed as the Competent
Authorities for implementation of different aspects of this legislation.
 Ethics

 The HSE has established Organ Donation Transplant Ireland (ODTI) as

the delegated body responsible for the implementation of the
obligations applicable to the HSE under the Directive and national
regulations.
 Ethics

Advanced Healthcare Directives

Origins of AHCD
 In 1969, Luis Kutner drafted first “living will” allowing a patient to set
out treatment decisions when patient lost capacity
 California adopted first statutory scheme for AHCD in 1976
 Definition: an adult’s written statement setting out type & extent of
treatment to which adult consents to or refuses if adult losses capacity
to make treatment decisions
 AHCD is an expression of autonomy & provides a patient with a
mechanism to record refusal of treatment
 Two types of AHCD
o Instructional directive i.e. directions for treatment &
o Proxy directive i.e. designated person is allowed to communicate
patient’s treatment choices
 There was anecdotal evidence of Jehovah’s Witnesses using
instructional and proxy AHCDs to refuse blood products
 In Governor of X Prison High Court held that an instructional AHCD is
valid where four conditions are satisfied
o Patient has capacity at time of writing AHCD
o AHCD applies to patient’s situation/condition
o Patient treatment decision is free & informed
o No evidence of patient changing mind since making AHCD
 Patient’s change of mind or values underpinning AHCD
o HE v A Hospital NHS Trust [2003] English case of a Muslim
woman became a Jehovah’s Witness & executed an AHCD
refusing blood products
o Change of values when woman became engaged to a Muslim man
& returned to Muslim faith
o English High Court found that AHCD was no longer binding
because of the woman’s changed circumstances

Ethical issues
 Dying patients had very individual needs and decision-making was, for
many, a social rather than a medical exercise.
 Active medical interventions and treatments were continued long after
some practitioners thought them appropriate and beneficial
 Little or no documentation of patients’ wishes
 Lack of planning means:
o Many deaths are managed through a moment-by-moment, event
by event decision-making process
o Embedded in uneasy communication between distressed and
grieving relatives and under-resourced and over-stretched carers
and clinicians
 Ethics

o Often collusion of families and clinicians to exclude patients;

particularly older and younger patients from awareness of and
participation in decisions about their dying and death
 From patients’ perspectives:
o Advance care planning is about preparing for death as well as
incapacity
o Not just based on exercising autonomy and control but on
personal relationships and relieving the burden on others
o Not just about filling forms but on the social process
o Not just about relationships with health professionals but also
loved ones and strengthening relationships
 Principles of doing good and avoiding harm …
o Traditionally exercised in a context of paternalism
o HSE policy, professional codes, legislation and case law indicate
doing good/avoiding harm should be exercised in a context of
respect for a patient’s right to participate in and make choices
about their own medical treatment
o The patient’s own view of their best interests is given weight
o Increased value is placed on patient autonomy
o The capacity of self-determination; a person’s ability to make
decisions about their own life based on their own beliefs and
values.
 AHD: Calculation or Shared Meaning?
o AHDs can be viewed:
 As a means to promote the ability of patients to determine
the medical treatment they will have at the end of their
lives (standard view)
 As instruments or tools that enable the inclusion of the
patient and the family in the process of decision-making at
the end of life (narrative view)
 Standard View of AHDs
o ‘According to this [standard] view, patients should decide on the
basis of objective information about risks and benefits. The
decision will be influenced by their system of preferences.
Ideally, a patient will choose the option which is in accordance
with his set of preferences. Therefore, decisions about treatment
and care can be calculated. If we know the patient’s preferences,
we can determine the right solution in an unambiguous way.’
o Sees the doctor-patient relationship as contractual
o Conceives the AHD as an instrument of patient autonomy
o Sees the AHD as an outline of preferences which enables health
professionals to calculate the best option for the patient’s
present condition
 AHD in 2015 Act = Calculation?
o In relation to a person who has capacity, means an advance
expression made by the person … of his or her will and
preferences concerning treatment decisions that may arise in
 Ethics

respect of him or her if he or she subsequently lacks capacity,

and
o In relation to a designated healthcare representative, means the
advance expression referred to in paragraph (a) under which the
representative was designated as such representative.
 ‘A refusal of treatment set out in an advance healthcare directive shall
be complied with if:
o At the time the directive-maker lacks capacity to give consent to
the treatment;
o The treatment to be refused is clearly identified in the directive;
o The circumstances in which the refusal of treatment is intended
to apply are clearly identified in the directive.’
 A request for a treatment = shared meaning?
o ‘A request for a specific treatment set out in an advance
healthcare directive is not legally binding but shall be taken into
consideration during any decision-making process which relates
to treatment for the directive-maker if that specific treatment is
relevant to the medical condition for which the directive-maker
may require treatment.’
 AHD respects negative (strongly) and positive rights of autonomy
 A Version of Substituted Judgement?
o A decision that would be consistent with what the patient would
decide if they had capacity. Based on information drawn from
people who know the patient and understand their values
o Task of representative:
 Follow the directive if it exists and is clear
 Interpret the directive if it is ambiguous or its application
uncertain
 Imagine what the patient would want on the basis of their
known beliefs and values if there is no directive
 Where there is ambiguity – consultation, preservation, benefit
o The healthcare professional concerned shall, in an effort to
resolve the ambiguity
 Consult with the directive-maker’s designated healthcare
representative (if any) or, if there is no designated
healthcare representative, the directive maker’s family and
friends, and
 Seek the opinion of a second healthcare professional, and
o If … the ambiguity still has not been resolved, the healthcare
professional shall resolve the ambiguity in favour of the
preservation of the directive-maker’s life.
 Guiding Principle
o Act at all times in good faith and for the benefit of the relevant
person.
 Ambiguity: The person with Dementia + AHD
 Ethical Rationale for AHDs
 Ethics

 Respect for autonomy acknowledges and protects the right

to a life structured by one’s own values (integrity view)
 Respect for autonomy acknowledges that people are the
best judges of their own interests (evidentiary view)
 Critical interests: interests that are critical to a meaningful
life
 Experiential interests: interests in positive experiences
 The person with dementia and AHD
 On both integrity and evidentiary views of autonomy; the
choices of people with severe dementia need not be
respected for reasons of autonomy
 (they might be respected for other reasons e.g. to avoid
stress).
 For reasons of precedent autonomy (previously expressed
wishes via AHDs)?
 Integrity view: strong case
 Evidentiary view: weak case
 On the integrity view of autonomy, an AHD is a judgement about the
overall shape of the kind of life we want to live.
o ‘Something is wrong . . . when we treat formerly competent
patients as if they were never competent. Someone who makes a
prior directive sees herself as the unified subject of a human life.
She sees her concern for her body, her goals, or her family as
transcending her incapacity. . . . One . . . component of treating
persons with respect [is] that we view them as they view
themselves. If we are to do this, we must not ignore their prior
choices and values.’
 Arguments for treatment withdrawal: focus on autonomy
o The AHD could be seen as supporting withdrawal (precedent
autonomy)
o The patient’s friends and doctor supported such an interpretation
o There is a narrative ‘fit’ with the patient’s story
o The ‘then self’ (competent person) and the ‘now self’ (person with
dementia) are the same person and the autonomous choice ought
to be respected.
 Arguments against treatment withdrawal: focus on beneficence
o The intent of the AHD is unclear
o Withdrawal conflicts with her contemporary well-being, the
patient is content, the treatment is not burdensome
o The ‘now self’ and the ‘then self’ are different persons. The
person with dementia has indicated that she wants to live
 Implications AHDs – Shared Meaning?
o Distinguish between AHDs re a person with dementia and a
person who is unconscious
o The desires, experiences and behaviour of the person with
dementia count
o Accept moral ambiguity and uncertainty
 Ethics

o Decision-making is not a mechanical process – a shared process

of interpretation
 Who can make an AHD?
o A relevant person who has attained the age of 18 years and who
has capacity is entitled to refuse treatment for any reason
(including a reason based on his or her religious beliefs)
notwithstanding that the refusal
 Appears to be an unwise decision,
 Appears not to be based on sound medical principles, or
 May result in his or her death.
o Exceptions : Pregnancy and subject to involuntary detention
under Mental Health Act 2001.
 Life and death without AHDs
o ‘[If] living wills are not enforced, it is not because physicians are
"disrespectful." It is because these are perplexing decisions
where the facts are ambiguous and good people are ambivalent.
An even more heretical possibility deserves to be explored—that
living wills may address a process not sufficiently broken to
justify efforts at repair and in any event not susceptible of repair
through living wills. The way treatment decisions are presently
made for incompetent patients is hardly error free. No human
process is. But it may not be significantly inferior to the way
decisions are made for competent patients.’
 Learning from past mistakes? Fagerlin and Schneider 2004: Checklist
for success?
o ‘People must have living wills …
o Must decide what treatment they would want if incompetent…
o Must accurately and lucidly state that preference…
o Their living wills must be available to people making decisions…
o Those people must grasp and heed the living will’s instructions
…’

 Learning from past mistakes

o What are AHDs for? To respect autonomy? To prevent over-
treatment? To save £££? Within Advance Planning – as
preparation for death
o Focus ensuring freedom from ‘external constraint’ but also pay
attention to the intimate, social and structural relationships that
enable autonomy understood in a dynamic, fluid and relational
way. Requires active support
 If circumstances are v. different, view
 AHD as guideline (not directive).
 Include and support loved ones and carers.
 Progressive specific AHDs e.g. Do not Hospitalize, person specific,
immediately actionable medical orders (POLST) that transfer with the
patient through the system.
 Ethics

 Support health professionals – education, communication, cultural and

ethical competence

Application of AHCD
 2015 Act defines treatment as ‘an intervention for a therapeutic,
preventative, diagnostic, palliative or other purpose related to patient’s
physical or mental health, including life-sustaining treatment ’
 2015 Act defines AHCD purpose as twofold
 Enable a patient to be treated according to his/her will & preferences
 Provide clinicians with information about patient’s treatment choices
 2015 Act Guiding Principle for AHCD – Refusal of treatment must be
accepted even if refusal appears to be unwise, appears not to be based
on sound medical principles, or, may result in patient’s death
 Treatment refusal must be followed if three conditions are satisfied:-
o Patient had capacity at time of making AHCD
o Treatment to be refused clearly identified in AHCD, &
o Circumstances in which refusal of treatment is intended to apply
are clearly indicated in AHCD
 AHCD request for specific treatment not legally binding
 Request must be taken into account during any decision-making
process provided treatment relevant to condition for which patient may
require treatment
 Clinician must record reasons for not complying with request i.e.
treatment not clinically indicated or unethical
 Proxy AHCD -- Patient may choose a person to act as the designated
healthcare representative (DHR) in AHCD
 DHR must sign AHCD to confirm willingness to comply with patient’s
will & preferences contained in AHCD
 A DHR acts as patient’s agent when exercising powers under AHCD
 DHR must ensure compliance with AHCD’s terms
 A patient may confer two powers on DHR
o Power to advise & interpret what are the patient’s will &
preferences regarding treatment by reference to AHCD
o Power to consent to or refuse treatment, up to & including life-
sustaining treatment based on the patient’s will & preferences by
reference to AHCD
 Criteria for ineligibility & disqualification of DHR similar to criteria for
Decision-Making Assistant or Co-Decision-Maker
 Requirements for Valid AHCD AHCD must be in writing, signed by
patient, any DHR & two witnesses of which one cannot be a family
member
 Invalidity of AHCD:- If patient did not make AHCD voluntarily i.e. AHCD
does not represent autonomous choice of patient
 Patient did anything clearly inconsistent AHCD when patient had
capacity i.e. Patient’s actions constitute a rejection of his or her
choices in AHCD
 Applicability of AHCD
 Ethics

o AHCD is inapplicable if:-

 Patient has capacity to give/refuse consent to treatment
 Treatment not materially same as treatment in AHCD or,
 Circumstances set out in AHCD as to when specific
treatment is to be requested/refused are absent or not
materially the same
 AHCD inapplicable to life-sustaining treatment unless patient
substantiates this in a statement to the AHCD
 In Fitzpatrick v FK [2009] held refusal of life saving or preserving
treatment requires clear & convincing proof because of gravity of the
situation
 An AHCD inapplicable to administration of basic care warmth, shelter,
oral nutrition, oral hydration & hygenie
 AHCD applies to artificial nutrition & hydration
 Ambiguity over AHCD validity or applicability Clinician resolve
ambiguity by consulting with any DHR, patient’s family & friends &
seek second clinical opinion
 Ambiguity unresolved then clinician should resolve ambiguity in favour
of preserving patient’s life
 Pregnant Woman, Unborn & AHCD Presumption in favour of treatment
where the AHCD contains no reference to pregnancy
 If AHCD refers to pregnancy, High Court application if refusal of
treatment have deleterious effect on unborn
 Effect of AHCD
o AHCD refusal is as effective as if it had been made
contemporaneously by patient if patient had capacity at time of
decision
o No civil or criminal liability for clinician who complies with AHCD
or who does not comply with AHCD because unaware of AHCD’s
exsitence
o No civil or criminal liability for DHR
 Revocation & Alteration of AHCD
o A patient with capacity can revoke AHCD in writing
o A patient with capacity may alter AHCD unless signed &
witnessed by any DHR & two witnesses
o Role of Minister
o Minister has power to specify AHCD forms
o Minister has power to require patient give notice of making of
AHCD to Director & other specified people
o Minister may require Director to establish an AHCD register

 Safeguards for AHCD

o DHR make a written record of decisions & produce record if
requested by Director or the patient who has regained capacity
o Complaints can be made against DHR to Director with possible
role for Circuit Court
 Ethics

o Circuit Court has power to issue declaration as to validity of

AHCD, applicability of AHCD or DHR acting in accordance with
relevant powers
o Director has power to issues codes of practice for AHCD
o Five year review of AHCD Part of 2015 Act
 Assessment of AHCD
o Provisions Significant change in law providing statutory
foundations for AHCD & DHR with significant safeguards
o One omission – there is no medical or legal assessment as to
patient’s capacity for AHCD similar to Enduring Power of
Attorney or Co-Decision-Making Agreement

Assisted Decision-Making (Capacity)

 When a person has capacity may appoint: Attorney under an Enduring

Power of Attorney
 Designated Healthcare Representative in a AHD (or make an AHD with
no appointed representative)
 Think Ahead/Plan Ahead
 Enduring Power of Attorney
 Advance Healthcare Directive
 Interveners: Stages for appointment
o When a person considers his/her capacity to be in question or
may shortly be in question may appoint a: Decision-Making
Assistant (to assist with decision/s)
o Co-Decision-Maker (to jointly make decision/s)
o When a person lacks capacity – application is made to the court
and if the court makes a declaration that person lacks capacity,
court will make an order (have regard to any AHD/EPA) to make
the decision on behalf of the person
 Ethics

o Appoints a decision-making representative to make specified

decisions on behalf of person
o Can be at different stages at same time for different decisions

Attorneys- Enduring power of attorney

 Attorneys appointed under 2015 Act
 Functional assessment of capacity
 Guiding Principles apply – participation by donor even if EPA has come
into effect
 Personal welfare decisions include healthcare decisions
 Attorney - ‘suitable person’
 Does not enter into force until: The donor lacks capacity in relation to
relevant decision/s
 Instrument creating EPA has been registered

 Statement by Attorney
o Understands implications of undertaking to be an attorney and
has read and understands information contained in the
instrument (EPA)
o Understands and undertakes to act in accordance with functions
set out as specified in the EPA
o Understands and undertakes to act in accordance with Guiding
Principles
o Understands and undertakes to comply with the reporting
obligations
o Understands the requirements in relation to registration
 Scope of Authority in EPA (1)
o Property and Affairs decisions
o Personals Welfare decisions (including healthcare)
 An attorney restrains a donor if he or she – Uses, or
indicates an intention to use, force to secure the doing of
an act which the donor resists
 Intentionally restricts the donor’s liberty of voluntary
movement or behaviour, whether or not the donor resists
 Administers a medication, which is not necessary for a
medically identified condition, with the intention of
controlling or modifying the donor’s behaviour or ensuring
that he or she is compliant or not capable of resistance, or
 Authorises another person to do any of the things referred
to above

 Scope of Authority in EPA (2)

o Donor can confer either or both of: General authority to act on the
donor’s behalf in relation to all or a specified part of the donor’s
property and affairs,
 Ethics

o Or authority to do specified things on the donor’s behalf in

relation to the donor’s personal welfare (includes healthcare) or
property and affairs, or both
o Which may, in either case, be conferred subject to conditions and
restrictions
 Scope of Decisions in EPA
o A donor shall not, in an EPA, include a relevant decision –
Relating to the refusal of life-sustaining treatment or
o Which is the subject of an advanced healthcare directive
 To the extent that an EPA includes a relevant decision relating to these
issues the power shall be null and void
 Registration of an EPA
o Application for registration to Director DSS
o Notice must be given to specified parties
o On receipt of application Director shall carry out reasonable
enquiries in order to establish criteria met: The EPA and
instrument creating it is in compliance with Act
o The attorney is a suitable person
o The attorney is eligible for appointment
o Notice has been given to specified parties
o The application is in accordance with provisions - Statement of
medical practitioner and healthcare professional
o Details of existing decision-making assistance agreement, co-
decision-making agreement, decision-making order, decision-
making representation order, power of attorney (whether
registered or not) or an advance healthcare directive

 Register for EPAs

o Director of DSS shall establish and maintain a Register Shall
make Register available for inspection
o Reports by Attorney for property and affairs shall within 3 months
of registration submit to DirDSS a schedule of assets and
liabilities
o Shall keep proper accounts and financial records in respect of
donor’s income and expenditure and shall Submit such accounts
and records as part of annual report to Director
o Make available for inspection by the Director or by a special
visitor, as may be reasonable, such accounts and records
o Make annual reports on the performance of his/her functions

Decision making assistant

 Decision-Making Assistant
o A person who consider his/her capacity to be in question or may
shortly to be in question may appoint another person/s to assist
the appointer in making one or more than one decision
 The appointment of an assistant decision-maker shall be
made in an Decision-making assistance agreement
 Ethics

 Can appoint more than one person in an assistant decision-

making agreement and may specify that the decision-
making assistants shall act:
 Jointly in respect of some matters and jointly and separately in respect
of other matters
 Agreement may be revoked by either appointer or assistant at any time
and may be varied by the appointer at any time
 No reporting requirements
 Functions of Decision-Making Assistant
o Assist the appointer to obtain appointer’s relevant information
(information required to make a decision)
o Advise the appointer by explaining relevant information and
considerations relating to a relevant decision
o Ascertain the will and preference of the appointer on a matter the
subject or to be the subject of a relevant decision and assist the
appointer to communicate them
o Assist the appointer to make and express a relevant decision
o Endeavour to ensure that the appointer’s relevant decisions are
implemented

Co-decision making
 A person who consider his/her capacity to be in question or may shortly
to be in question may appoint a suitable person/s in writing in a co-
decision-making agreement to jointly make one or more than one
decision on the appointer’s personal welfare or property and affairs or
both
o A person is suitable for appointment as a co-decision-maker if he
or she – Is a relative or friend of the appointer who has had
personal contact with the appointer over such period of time that
a relationship of trust exists between them and
o Is able to perform functions under the co-decision-making
agreement
 An appointer may appoint more than one person in a co-decision-
making agreement but may not Appoint in the same co-decision-making
agreement more than one person as a co-decision-maker or
 Appoint in a co-decision-making agreement a co-decision-maker in
respect of a relevant decision which is the subject of another co-
decision-making agreement
 Co-Decision-Making Agreement must be signed by appointer and co-
decision-maker and witnessed by 2 witnesses of whom at least one is
not an immediate family member
 Functions of a Co-Decision-Maker
o Advise - by explaining relevant information and considerations
relating to a relevant decision
o Ascertain the will + preference of the appointer on a matter the
subject of or to be the subject of a relevant decision + assist the
 Ethics

appointer with communicating the appointer’s will and

preference
o Assist the appointer to obtain appointer’s relevant information
o Discuss the known alternatives and likely outcomes
o Make a relevant decision jointly with appointer
o Make reasonable efforts to ensure that a relevant decision is
implemented as far as practicable
o Shall be entitled to be reimbursed
 Co-Decision-Maker- obligations
o Obligation to inform Director if capacity deteriorates/improves
o Shall acquiesce with wishes of appointer and shall not refuse to
sign document unless reasonably foreseeable that such
acquiescence or signature will result in serious harm…..
o —Shall not have authority to make decisions jointly with relevant
person other than the relevant decisions in Co-DM agreement
o Where more than one Co-DM, each shall exercise functions in a
manner which is not inconsistent with functions of another Co-
DM
 Registration of a Co-DM Agreement
 Shall not enter into force until registered
 Application must be made within 5 weeks from date agreement signed
(Objections to registration – within 5 weeks of notice)
 Notice must be given jointly to ……
o Application Statement by appointer….understands implications
o Statement by co-decision-maker…..guiding principles….reporting
obligation
o Statement as to why less intrusive measure of decision-making
assistance agreement was not chosen
o Details of any other agreements/epa/ahd…..
o Statement by doctor and healthcare professional……
o Character reference of co-decision-maker
o Copies of notices and Fee
 Registration of CDMA
o Director DSS will review application + any objections received
Carry out enquiries
o Where satisfied register CDMA and notify applicants date
registered
o Where not satisfied notify applicants, provide reasons and give
time to respond – if failure – court application
o Effect of registration Cannot be challenged on grounds that
appointer did not have capacity to make decision
 Register for Co-Decision-Making Agreements
o Director of DSS shall establish and maintain a Register Shall
make Register available for inspection
o May issue an authenticated copy of C0-DM Agreement
o Shall keep a record of those who inspected Register or who
obtained a copy of Agreement
 Ethics

 Director shall review – 3 months - first anniversary and thereafter at

intervals not exceeding 3 years Statements required from medical
practitioner/healthcare professional
 Reports by Co-Decision-Maker annually
 Revocation (whether registered or not) May be revoked at any time by
the appointer or co-decision-maker or both
 Registration of a Co-DM Agreement
 Shall not enter into force until registered
 Application must be made within 5 weeks from date agreement signed
(Objections to registration – within 5 weeks of notice)

Decision-Making Representation
 Court makes a declaration that relevant person lacks capacity
o Court may make order: Making the decision/s if satisfied matter is
urgent or it is expedient to do so
o Make an order appointing a Decision-Making Representative
o In making order takes account of any EPA/AHD and in making
order ensure terms are not inconsistent with EPA/AHD
 In appointing DM Representative court will have regard to:
o The known will and preferences of relevant person
o Desirability of preserving existing relationships within family
o Relationship/Compatibility between relevant person + proposed
representative
o Whether proposed representative will be able to perform
functions
o Any conflict of interest
 Decision-Making Representation Order
o Court will set out powers of decision-making representative
o Impose duties and attach conditions and time period to apply
o Ensure that powers are limited in scope + duration as necessary
 May appoint one or more than one person for different decisions
o Where more than one person appointed the court order shall
specify whether such persons are to act jointly,
o jointly and severally or
o jointly as respects some relevant decisions and jointly and
severally as respects other relevant decisions
 Decision-Making Representative: Scope of Authority
o Cannot prohibit contact with others
o Authority confined to decisions included in court order
o Cannot make decisions on life-sustaining treatment (consent or
refusal)
o Shall not restrain relevant person unless exceptional emergency
circumstances
o Shall not administer medication to control or modify behaviour of
a relevant person
 DDSS shall maintain a Register of DM Representation Orders
 Ethics

o DDSS shall establish a panel of suitable persons willing and able

to act as decision-making representatives
 Decision-Making Representative: Obligations
o Within 3 months of appointment file with DDSS statement of facts
to include schedule of assets + liabilities + projected statement
of income + expenditure
o Keep accounts and financial records
 Submit periodic reports to include report on the performance of his/her
functions
o May have to provide security in relation to appointment
 Ineligibility Disqualification Complaints
o Persons who are ineligible to be appointed
o Person who has been appointed but disqualified from acting
o Complaints in relation to Interveners
o Offences: Co-DM, EPA and AHD

Courts Jurisdiction
 Circuit Court to have exclusive jurisdiction for purposes of the Act
except in specified matters where the High Court has jurisdiction such
as: Life sustaining treatment
 AHD and pregnancy
 Where HC is the wardship court
 Review of persons who are involuntary detained for purposes of Mental
Health Act 2001
 Hague Convention
 Circuit Court judges – specialist judges
 Court Orders
o Court will have power to make:
o a declaration as to whether a person has capacity or not
o a declaration as to the lawfulness of an intervention proposed to
be made in respect of relevant person
o Interim order In relation to a matter in which the court has
jurisdiction in relation to the matter
o The court has reason to believe that the relevant person lacks
capacity (Re F [2009] EWHC) and
o In the opinion of the court, it is in the interests of the relevant
person to make order without delay

Wards of Court
 Review of all existing wards within a period of 3 years from operation
of legislation Application by relevant person
 If lack capacity will be discharged and assessed as to what decision-
making support necessary Co-Decision-Making or Decision-Making
Representative and on registration/appointment property returned
 Lunacy Regulations(Ireland) Act 1871 will be repealed
 Ethics

Decision Support Service - Functions

 To promote public awareness of the Act + matters relating to the
exercise of capacity………….
 To promote public confidence in the process of dealing with matters
that affect persons who require assistance…..
 To provide information to relevant persons in relation to their options
for exercising capacity
 To supervise in accordance with the Act compliance by…….
 To provide information in relation to the management of property and
financial affairs to relevant persons and to ……
 To provide information and guidance to organisations and bodies in the
State in relation to their interaction with relevant persons
 To identify and make recommendations for change in practices in
organisations and bodies in which the practices may prevent a relevant
person from exercising his/her capacity
 Investigations by Director
o Director may investigate on own initiative or in response to a
complaint May summon witnesses and examine them on oath
o Require the witness to produce any document under his/her
power or control
o By notice in writing require any person to provide such written
information as the Director considers necessary
o Director can investigate complaint even though complainant may
be entitled to bring court proceedings
o Director may seek resolution of complaints in such manner
(including by informal means) as Director considers appropriate
and reasonable
o Director shall draw up procedures and publish them
o Person can be guilty of offences if fails to comply or
hinders/obstructs Director in the performance of functions
 Codes of Practice
o The Director may Prepare and publish a code of practice
o Request another body to prepare a code of practice
o Approve a code of practice prepared by another body
o For the guidance of ……to include persons acting as advocates on
behalf of relevant persons
o Where the Director minded to exercise powers, shall consult with
HSE, MHC, HIQA, NDA, CIB
o Representatives of professional bodies in healthcare, social care,
legal and financial sectors
o Representatives of healthcare, social care, legal and financial
professionals
o Code of Practice shall be admissible in legal proceedings