Presentation at a Grand Round on DNR Department of Medicine,
King Fahad Medical City Riyadh on 13th
March 2012 by Dr Omar Hasan K Kasule Sr MB ChB (MUK), MPH (Harvard), DrPH
(Harvard) Department of Bioethics King Fahad Medical City.
Abstract
The paper asserts that consideration of DNR should relate
exclusively to cardio-respiratory failure. It analyses practical issues arising
in the implementation of DNR from the perspectives of maqasid al shari’at
and qawa’id al shari’at. The issues covered relate to uncertainties, protection
of life, protection of the patient from potential harm, conservation of resources,
and implementation issues. The paper proposes that DNR orders shall be written
for patients in an established death process i.e cardio-respiratory failure beyond
Young’s point ‘z’. Patients with terminal incurable conditions who develop
acute and reversible cardio-respiratory arrest should be resuscitated if they
will have a nett benefit from CPR lasting for a reasonable time. The paper
proposes 5 components of DNR (cardiopulmonary resuscitation involving chest
compressions and oxygenation, endotracheal intubation, mechanical ventilation,
defibrillation, and vaso-active/ionotropic medication) that may be provided in
any order and combination on a case by case basis. DNR patients on a case by
case basis may/may not get renal dialysis, blood transfusion, parenteral
nutrition, pulmonary hygiene, normal treatment e.g. antibiotics. All patients
irrespective of their DNR status deserve supportive care: clearance of
secretions, hydration, nutrition, pain management, supplemental oxygen,
sedation, antipyretics, anti emetics, relieve of constipation, relief of
urinary retention, relief of dypnea and cough. Recommended measures for
improving DNR processes are: training workshops on EOL ethical issues for
physicians and nurses, DNR orders specifying interventions intended/prohibited,
respecting the autonomy of physicians who have conscientious objections to DNR,
more psycho-social support for DNR families, more empirical research on the DNR
process, and regular audits of DNR decisions.
Introduction
The 2 main objectives of DNR orders are
to respect patient autonomy and to prevent unnecessary non-beneficial
intervention are not fulfilled well in practice[i].
Confusion in discussions and decision making about end of life issues arises
from different perceptions of what terms mean. We need to start by clarifying
the terminology used and the underlying conceptual basis. Most DNR policies
provide procedural and technical guidelines[ii] [iii]
but do not explore the conceptual basis which leaves the physician in a lurch
when the situation at hand does not fit the guidelines perfectly and he has no
conceptual or methodological basis for independent thinking. Algorithms can
help physicians make EOL intervention decisions quickly under pressure of time[iv]
but no specific case will fit properly with the algorithm necessitating
equipping the physician with basic principles that can be applied to all
situations. This paper is educational and is an attempt to provide a conceptual
basis for analyzing ethical issues that relate to DNR using principles of
Islamic Law. The paper does not use original sources nor does it refer to past
or current legal opinions, fatawa, because its purpose is to provide a
physician with simple axioms that can enable reasoning through and
understanding complicated ethical issues. The final decisions in specific cases
should be referred to the competent authorities in each jurisdiction. The
approach of equipping physicians with the maqasid and qawa'id tools for
analysis of ethical issues has two main advantages: (a) it teaches them to fish
instead of giving them fish (b) each ethical case is unique in its
circumstances and no one legal opinion, fatwa, can cover all the nuances
involved thus leaving room for personal analysis and understanding by the
physician.
Methods
The purposes of the Law, maqasid al
shari’at[v],
and the principles of the Law, qawa’id al fiqh[vi],
provided a conceptual framework for analyzing practical issues related to DNR
orders. The issues were identified from a pubmed literature search using the
key word ‘DNR’ and covering a span of about 30 years of DNR experience. The
issues were analyzed as they related to the principle of certainty, qa’idat
al yaqeen, and the principle of preventing harm, qa’idat al dharar.
The issues were also analyzed as they relate to the purpose of preserving life,
hifdh al nafs, and the purpose of preserving resources, hifdh al mal.
Results
Issues related to the principle of certainty, qa’idat
al
yaqiin
Terminal
illness,
maradh al mawt, defined as illness from which recovery is not expected,
is also called the End of life (EOL) or approaching the end of life (AEOL). The
period is variable from a few days to several months. The definition of
terminal illness is based an empirical probability estimation reflecting
experience of similar patients in the past who succumbed to their disease.
Being a probability statement, terminal illness does not apply to all patients
since diagnosis and prognosis are not 100% exact. There are anecdotal cases of
terminally patients living a normal life for years but these are the exception
and reflect that probability estimates by humans are not perfect because of
limited knowledge and understanding of empirical knowledge, ‘ilm al shahadat,
and complete ignorance of the unseen, 'ilm al ghaib. The basic and
default position is that of the certainty, yaqiin, that illness is
reversible. A diagnosis of terminal illness must be based on strong clinical
evidence interpreted within previous institutional experience. This is in
conformity with the principle of the Law that certainty cannot be voided by a
doubt or a speculation, al yaqiin la yazuulu bi al shakk (Majallat
Article No ).
Death and the moment of its occurrence
are uncertain in this era of technology. Death is not an event but a
process with a time line that may be long or short. Theoretically death starts
at birth because cells and tissues die and degenerate. During the period of
growth and development until about 35 years the repair or regenerative
processes are dominant over the degenerative ones. After that the degenerative
processes increase until a point that regeneration and repair are overwhelmed
and death can ensue without specific pathology and this is the basis for the
inevitability of death. Pathological insults to the body structure or functions
hasten the degenerative processes and may hasten the process of death.
Degeneration affects all organs and functions of the body but the final common
pathway is cardio-respiratory failure that impairs perfusion of cells by oxygen
and nutrients necessary for metabolism. Brain tissue being the most sensitive
to oxygen and nutrient deprivation will die first. There is however a chicken
and egg argument here. If the brain dies first, the cardio-respiratory system
will die soon after because its coordinated function requires that some brain
centers remain active and alive. If the cardio-respiratory function dies first
the brain will not get oxygen and nutrients and will die. Cardio-respiratory
failure is progressive but hastens as final death approaches. There is a point
of irreversibility along this death time line called Young’s ‘point z’; it
separates prolongation of life from prolongation of death. Beyond this point is
an established death process. All forms of life support, basic and advanced,
before this point have some benefit albeit temporary. Advanced life support
beyond this point is futile. It is unfortunate that many patients beyond point
z are in intensive instead of palliative care because physicians are reluctant
to decide on withholding or withdrawing life support[vii].
The definition of legal death is under the principle of custom, qa'idat al
'aadat. It is based on the existing consensus among physicians at that time
that is considered the usual custom and is therefore legally binding, al
'aadat muhakkamat (Majallat Article No,).
This implies that the definition can change with progress of medical
science and is still valid according to the principle that changes in the
customary are accepted, la yunkiru taghayyur al… (Majallat Article No ).
Perioperational DNR is in a grey
uncertain area. It is not possible to tell whether cardiopulmonary
arrest in the perioperational period is due to the disease or is due to the
anesthetic drugs[viii]. There is ambiguity and diversity of
perceptions and implementation regarding perioperational DNR orders[ix] [x].
Some hospitals questioned the perioperational suspension of DNR orders[xi] [xii].
Some hospitals automatically suspended DNR orders while others offered no,
limited or full resuscitation[xiii].
Some dealt with the matter on a case by case basis[xiv]. The questioning is greater if the suspension
of DNR orders is being considered for palliative surgery[xv].
According to the principle of certainty, we should avoid doubtable things
and this is reinforced by the hadith 'leave what causes you doubt to what does
not da' ma yuriibuka ila ma la yurribuka ( ).
I would conclude that DNR orders shall be suspended in the perioperational
period and can be reinstituted after recovery from the effects of the
anesthetic.
Pre hospital DNR has uncertainties
associated with it. In emergencies ambulance personnel by mistake
resuscitate persons with advance directives against resuscitation because of
lack of proper patient identification or unavailability of the DNR documents[xvi] [xvii]
[xviii]
or undertake futile resuscitation[xix].
Emergencies such as chocking or suicide attempts with DNR orders create
complex legal problems[xx]. According
to the general principle mentioned above, ambulance personnel should
resuscitate whenever they are in doubt. This is because of the overriding
purpose of protecting life, maqsad hifdh al nafs.
Issues Related to Purpose of Protection
of life, maqsad hifdh al nafs
Artificial Life Support is a series of
medical measures taken to reverse cardio-respiratory failure in order to
fulfill the purpose of protecting life. It can be basic life support (BLS) such
as chest compressions or may be advanced life support (ALS) such as intubation
and mechanical ventilation. Resuscitation has a low survival rate at best less
than 20%[xxi] [xxii];
survival is determined more by the underlying disease than the resuscitation
efforts[xxiii]
which calls for a re-evaluation of instituting resuscitation measures in the
first place.
The doctrine of futility is
invoked when the interventions have no nett and lasting impact on
cardio-respiratory decline and may even have risks such as rib fracture. Allow
Natural Death (AND) roughly translated means do not interfere by advanced
life support measures for patients in an established death process. Dot Not
Resuscitate (DNR) or Do Not Attempt Resuscitation (DNAT) is a
clinical decision not to institute advanced life support measures such as
intubation and mechanical ventilation. In practice AND and DNR are equivalent
but some providers thought that AND was ambiguous but more family oriented[xxiv].
In futile cases, withholding life support means not starting any
artificial and radical cardio-respiratory support measures and withdrawal of
life support means stopping some or all artificial cardio-respiratory
support measures followed soon after by death. It is easier to withhold than to
withdraw according to the principle yghtafar fi al ibtida ma la yughtafar fi al
intiha (Majallat Article No,. ). Mortality
among patients on DNR is high; one author asked the rhetorical question ‘Do patients die because they have DNR
orders, or do they have DNR orders because they are going to die?[xxv].
A serious ethical issue arises if patients die because of DNR orders.
Do
Not Treat (DNT) falls
under the doctrine of advance directives (living will) in which the patient or
his/her representative exercise prospective autonomy to reject treatment
considered futile for their specific disease condition. If the intervention is
of minimal or of temporary benefit and it has side effects that make the nett
benefit zero or even negative, it is moral not to intervene. DNT refers to
intervention against the original condition like metastatic cancer. Once a DNT
decision has been made the patient has to be transferred to a hospice or
palliative care in the hospital or at home where high tech interventions are
not available and are not offered. It is emotionally difficult to maintain a
DNT order in a high tech environment because of the human tendency to ‘do
something’ even if futile.
Euthanasia is an act of
commission or an act of omission that hastens death with the aim of saving the
patient from pain or further suffering, physical or psychological. Active
euthanasia is an act of commission that involves a positive and deliberate
action that will hasten death. Passive euthanasia of omission that involves
failing to take action to save life. In Islamic Law there is no essential difference
between commission and omission because actions are judged by their intentions,
al umuur bi maqasidiha, and both share the same intention, hastening
death. Passive euthanasia (PE) is exercised by withholding advanced or basic
life support measures and is most commonly undertaken in the form of DNR orders[xxvi].
Patient
mismanagement due to conceptual confusion: If DNR is misinterpreted as DNT
the patient is neglected and may not receive routine care because he is thought
to be dying. When DNT is misinterpreted as DNR, we may not resuscitate patients
who arrest even for reversible conditions not related to the terminal disease.
Writing a DNR order for a patient with an incurable condition who is not in
an established death process is a form of passive euthanasia. What is
appropriate in such a case is DNT order accompanied by transfer to
palliative/hospice.
Issues related to Principle of Prevention of harm,
qa’idat al dharar
Consent
for DNR:
The patient or the family make the crucial decisions about DNR[xxvii]. DNR and Advance directives assure the patient
of prospective autonomy[xxviii].
Consent by the patient is the most effective way of fulfilling the purpose of
protecting life because the patient has an inherent interest in the life of the
patient and could not in normal circumstances seek self-harm. Patients’ choice
of DNR or otherwise are affected by their perceived quality of life[xxix],
their perception of their poor prognosis and understanding of hospice care.
Patient gave consent to DNR and some signed the consent themselves while the
family signed for others. Poor physical or psychological condition, consultant
concerns, and family wishes were reasons for not involving some of the patients
in DNR discussion[xxx].
Violation
of the patient autonomy for DNR, causes harm to the patient. Non-medical
emotional or social considerations may lead to ignoring the patient’s
autonomous choice of DNR because CPR as an intervention is invested with a lot
of emotional impact[xxxi].
A school system did not honor the DNR decision reached by a 16-year old cardiac
patient with the parents and primary care physician because they could not
tolerate the emotional pain to teachers and other students watching a student
go through the agonies of death without doing anything[xxxii]
[xxxiii].
When DNR status is discussed or decided late in the course of the illness the
patient’s capacity to participate in the decision is limited and his autonomy
could not be respected[xxxiv]
[xxxv].
Consent
for CPR is
protection of patient interests. A lot of discussion is about the right
of autonomy to consent to DNR without the realization that patients should be
given an opportunity to consent to CPR[xxxvi].
The autonomous right to consent to CPR is not discussed because of the
presumption being that every CPR should be carried out for every
cardiopulmonary collapse for example New York State passed a law making
resuscitation the default position unless refused by the patient[xxxvii].
A more positive approach would be to perform CPR if it is beneficial unless the
patient refused[xxxviii].
From a historical perspective, DNR policies emerged to check the excesses of
technology related to a universal presumption of consent to CPR[xxxix]
[xl].
Existence of the DNR policy is an inducement for physicians to seek consent for
CPR and not act on presumptions[xli].
CPR in emergencies is carried out without consent[xlii]
since there is no time to go through the normal routines of informed consent.
Paternalism , an attitude
of physicians that they know what is best for the patient and therefore make
decisions without respecting the patient’s autonomy, can harm the patient’s
interests. Paternalism occurs in 2 ways in EOL decisions: (a) instituting CPR
automatically without informed consent (b) DNR without patient or family
involvement. Physicians in many cases do not discuss with patients and base DNR
decisions on perceived low quality of life which may be an underestimate;
patients could have a different view if they were consulted[xliii]. A Canadian study
indicated physician dominance of DNR decisions by establishing the strongest
predictors of DNR orders as: physician prediction of survival, physician
perception of the patient’s preferences, physician diagnosed organ dysfunction,
physician determined medical diagnosis, and the patient’s age[xliv]
leaving little or no room for patient-driven choice. Over the years a movement
has been building up against physician paternalism because unilateral decisions
on withholding and withdrawing violate patient dignity[xlv]
and autonomy. The US Veterans Health Administration had a policy forbidding a
physician from entering a DNR order against patient objections even if he had
good reasons to believe that resuscitation was futile[xlvi].
Family
assent to DNR is
protection of the patient’s interests in jurisdictions that treat DNR as a
clinical decision by the physician with no input from the patient or substitute
decision maker. The requirement that the family be informed of the decision
before implementation is in practice a form of seeking assent because no
physician will sign and implement a DNR order against loud protests by the
family. Relieving the family of the burden of being part of an informed
decision process for DNR, in my opinion, is a very judicious consideration of
local culture and family dynamics. Members of the family would not like to take
responsibility for a decision that can end life.
Age
discrimination harms
patient interests. It is unethical to base DNR decisions on age alone reasoning
that old people have to die anyway. Protection of health operates equally at
all ages but the practice has been different. Several studies found a
significant association between old age and DNR orders with age being the main
independent factor of DNR[xlvii]
after controlling for disease severity as a confounding factor. The discrimination
became worse at higher ages[xlviii]. There is no quantitative reason for
withholding CPR on the basis of age[xlix].
Many of the elderly may want to be resuscitated but may have inadequate
knowledge of the process with the result that physician preferences for DNR
predominate[l].
Issues elating to purpose of
conservation of resources, maqsad hifdh al maal
Resource over-utilization: The
commonsense view that DNR will result in less utilization of ICU resources is
not true in practice especially when the orders are written too late in the
course of the disease. DNR patients appeared to use more costly resources. They
stayed longer and had higher hospital charges[li].
Savings were made only if DNR orders are written earlier in the course of the
disease[lii].
It is not possible to write DNR orders very early in the course of disease
because the irreversibility of the death process may not be yet apparent.
Inappropriate
utilization of Intensive Care Unit (ICU) resources: ICU is a
specialized multi-disciplinary unit with concentration of advanced life support
skills and technology. It however misuses its expensive resources in many
ways. For clarity I would suggest some
synonyms for ICU that allude to potential misuse: Futile Care Unit (FCU)
because of high mortality and low discharge to normal life, Wasteful Care Unit
(WCU) because of high technology resources wasted in futile interventions,
Extremist Care Unit (ECU) because of high-end technologies, Mortuary Care Unit
(MCU) because dead corpses are maintained on life support, and Hospice Care
Unit (HCU) because of admitting hopeless cases that should be in palliative
care. As we rethink ICU operations we should set discharge to normal life as a
key performance indicator (KPI) because it is a reflection on admission decisions
in addition to the care given in the ICU. Poor outcomes from the ICU reflect
admission of futile cases.
Palliative Care
saves resources while providing humane care. It is a resource saving
alternative for terminal patients who cannot get nett benefit from life support
or conventional treatment. Existence of a large palliative care unit alongside
an ICU will result in considerable saving of resources because DNR and DNT
patients would be admitted directly to palliation instead of the more expensive
ICU care. Palliation has to do with making the death process as comfortable as
is possible. Palliative care is in low tech environments: the home, in a
hospice section of a hospital, or in a freestanding hospice. Palliative care
has several modalities: pain control, spiritual preparation, emotional and
psychological support, communication, appropriate symptom management using
available essential drugs/medication without over-treating, nutrition support,
and occupational therapy. Alternative/complimentary therapies can be used for
example aromatherapy relaxing treatment, massage, meditation, relaxation, and
music. Care is taken to prevent development of complications such as infection
and pressure sores.
Implementation issues
DNR
policies and guidelines: Health organizations differed in their DNR policies,
some had formal policies, some had informal policies, and some had no policies.
Formal policies were associated more with larger institutions that were
accredited and had ethics committees[liii].
Implementation of the DNR concept varied by organization[liv].
Institutional documentation of discussions and decisions about DNR was poor[lv].
Knowledge
of physicians regarding DNR: Physician knowledge of DNR issues is
variable. The term "DNR" was found to be ambiguous and the rationale
for DNR orders was also not well articulated in practice[lvi].
Junior doctors writing DNR orders had a poor understanding of what DNR meant[lvii].
Residents had limited knowledge and skills regarding DNR[lviii].
They were uncomfortable with EOL decisions. They misinterpreted the terms ‘DNR’
and ‘futility’, and did not practice according to what they were taught in the
formal curricula[lix].
Practices
of physicians regarding DNR: Inconsistency in physician practices
relating to DNR reflected underlying uncertainties in DNR policies. It was found that 11% of physicians who
wrote a DNR order for a patient would still do chest compressions when the
patient arrested[lx].
In Taiwan 77.6% of physicians would inform terminal patients and families about
DNR but 58.4% did not know whether allowing natural death was legal[lxi].
Ideally DNR patients should not be in the ICU but it was found that DNR was
initiated by ICU physician in 80% of cases and by most responsible physician
(MRP) in 20% of cases; ideally the MRP who knows the patient best should write
the DNR order. There were delays in completing signatures, some orders were not
even signed, and discussions with the family were not documented[lxii].
Identification
of DNR patients: In
the stress of emergencies mistakes could be made in identifying DNR patients.
Hospitals use color coded wristbands but the colors vary and confusion could
occur[lxiii].
Deciding
candidates for DNR
Lack
of DNR criteria:
In order to define what procedures are involved in DNR we need to have a
consensus on what conditions qualify for DNR. In my visits to some hospitals I
have seen policies and guidelines giving examples if the types of conditions
for DNR. There is therefore wide variation among consultants in DNR decisions
in the absence of more definitive criteria. The following are some of the
examples given: 1. advanced multi-organ failure, 2. irreversible, severe, and
documented brain damage 3. advanced cardiac, hepatic, or pulmonary disease 4.
inoperable, life threatening congenital heart disease, 5. fatal chromosomal or
neuromuscular disease 6. irreversible, severe, mental and physical incapacity,
7. advanced incurable, end-stage malignancy 8. end-stage renal disease if renal replacement
therapy is not feasible 9. brain death.
Developing
a criterion for DNR requires distinguishing an established death process from
the pre-death process. A DNR order for a condition within the death
process is understandable because of the futility in reversing the
cardio-respiratory collapse. If resuscitation is attempted, the patient will
recover for a short time and succumb again the only other alternative being
maintaining artificial life support for an indefinite time with no hope of
recovery. The DNR order for such cases is usually a short time before final
death because these conditions can only be ascertained for patients already in
the death process. The term ‘Allowing Natural Death’ is appropriate because
these patients are already in an irreversible trajectory to certain death and
there is no need for futile artificial interference. Resuscitation of these
patients will have no nett benefit lasting for any reasonable time.
Pre-established death process: Most of the examples
mentioned above precede but are not part of an established death process.
Patients with these conditions can survive for various periods of time until
they succumb to their illness or to some other illness. Because of the poor
prognosis for these conditions, artificial heroic interference beyond normal
maintenance or supportive treatment of any kind is not appropriate. This
includes CPR in addition to other surgical or medical procedures. These
patients should therefore be not be under the DNR policy but should be covered
by DNT policies. They should also be admitted from the beginning to wards or
palliative care units without advanced life support facilities in the knowledge
that these will not be needed. It should be part of the policy that they are
not admissible to the ICU with appropriate explanations for their families.
Cardio-respiratory collapse in these patients may be due to the primary
condition or may not be but the distinction is only of theoretical interest
because in a situation requiring urgent intervention, there is no time to
ascertain the cause of the collapse. The
use of DNR orders for such patients creates many moral issues that require
discussion. The DNR order is not based on whether they will benefit from the
resuscitation or not. It is based on the presumption that even if they benefit
from resuscitation, they will succumb sooner or later to their disease so the
resuscitation is futile. The futility of resuscitation in this case is related
more to the remote outcome and not on the current cardio-respiratory collapse.
A DNR order would be illegal if done to save the patient from further suffering
because that would be passive euthanasia.
Criteria
for DNR:
My simple understanding is that DNR can only be valid if the patient is in the
death process beyond the z point. The principle of certainty, qa’idat al
yaqiin, guides the determination of
the point ‘z’ as a point of irreversible cardio-pulmonary collapse. The purpose
of protecting life, hifdh al nafs, is irrelevant beyond the z point and
the purpose of resource preservation, hifdh al mal, becomes operational.
DNR for any untreatable or incurable condition before an established death
process is (a) a form of passive euthanasia.
Deciding
contents of a DNR order
DNR stands for ‘do not resuscitate’ and
is withholding specific measures that will reverse cardio-respiratory collapse.
These measures are considered heroic and futile for patients in an established
death process. They are useful for patients with cardio-reversible respiratory
collapse enabling them to survive longer for a reasonable time. DNR does not
mean do not care (Fields 2007[lxiv]).
DNR patients should not be neglected and should get all other types of
supportive care.
We can reach the following conclusions from reading
the literature and review of hospital practices: 1. There are basically
5 cardio-respiratory life support measures that can be included in a DNR
order: cardiopulmonary resuscitation involving chest compressions and
oxygenation, endotracheal intubation, mechanical ventilation, defibrillation,
and vaso-active/ionotropic medication. These measures are applied in any order
and in any combination. 2. Life
support measures not related to cardio-respiratory support may/may not
continue during DNR: renal dialysis, blood transfusion, parenteral nutrition,
pulmonary hygiene, normal treatment e.g. antibiotics. 3. Supportive
care during DNR should continue including: clearance of secretions (oral,
nasal, endotracheal, etc.), hydration, nutrition, pain management, supplemental
oxygen, sedation, antipyretics, anti emetics, relieve of constipation, relief
of urinary retention, relief of dypnea and cough.
Recommendations
(a) Training workshops should be held for all
concerned healthcare givers on the ethical issues of EOL with special emphasis
on: understanding differences among: DNR, DNT, and euthanasia; appreciation
that DNR does not mean stopping conventional and supportive care (b) Specifying
in the DNR orders the interventions permitted and those prohibited for example ‘do
not intubate’[lxv].
(c) Respecting the autonomy of physicians who have conscientious objections to
DNR with discussions on how they can function in the healthcare team in the
future. (d) Providing more psycho-social support for DNA families (e)
Undertaking empirical research on the DNR process in the institution:
indications, decision process, outcome (death/survival) (f) Carrying out regular
audits especially of mistakes and malpractices will help develop institutional
learning and institutional memory; help change and development[lxvi];
and help in evaluation[lxvii].