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120313P - DNR OUTSTANDING ETHICO-LEGAL-FIQHI ISSUES

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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].