“Ethics is knowing the difference between what you have a right to do, and what is right to do.”
- Potter Stewart, Associate Justice, United States Supreme Court, 1958-1981.
Before the evolution of modern medicine, death had been a well-accepted inevitability of life, wished to happen at home surrounded by family members. This inescapable truth had become an integral component of every religion, culture and society with defined rites and rituals. With the advent of cardiopulmonary resuscitation and organ support technologies in the second half of last century, this integrated approach to end of life started receding towards denial, altering the trajectory of the process of dying.[2]Now ordinary people want and demand everything to be done to prolong the life of their loved ones, as it gives a virtual satisfaction to them and answer to others. Chest compression, defibrillation, escalating vasopressors, mechanical ventilation, dialysis, artificial nutrition in the loneliness of intensive care unit, is becoming a new ritual narrative of dying process, replacing the age old religious chants and prayer in the presence of relatives and friends.[3]Consequently, more and more patients are dying in intensive care units with organ support and resuscitative measures, creating an ethical dilemma whether the updated knowledge and technology of medicine is extending life or prolonging death.
Physicians also overlook patient’s wishes, treatment burden and quality of life, in the enthusiasm to counter or modify the effect of disease with updated knowledge and technology. In the delusion of “acting God” physician fail to bless the patients with quality life and peaceful death.[4]Despite the growing emphasis on palliative care, healthcare providers often fail to discuss with patients and their families about end of life care, and when time arrives, find themselves unprepared to help.[5]
CARDIOPULMONARY RESUSCITATION- TO DO OR NOT TO DO?
Introduction of cardiopulmonary resuscitation (CPR) in 1960 challenged the well-established notion that death is final and absolute. Resuscitation was started when patient lost spontaneous pulse, and according to cardio-respiratory criteria is either dead or apparent dead. For laypersons, success of CPR was interpreted as return from death or avoidance of otherwise certain death. CPR was also adopted as a test to differentiate dead and apparent dead, to assure people that those who appeared to have died can be buried without fear of awakening in coffin.[6]Evolution of concept of patient autonomy forced a universal assumption and acceptance on the part of healthcare providers that not providing CPR constituted passive euthanasia and might invite judicial prosecution.[7]CPR became so pervasive that it was demanded for every patient irrespective of disease process or treatment outcome. This resulted in growing number of patients survived with irreversible brain injury, poor quality of life and prolong painful demise, with injudicious consumption of scares healthcare resources.
A remarkable study published in NEJM in 1983 showed that though CPR revived nearly half of the patients of in-hospital cardiac arrests, only one third survived to hospital discharge.[8]Physicians started realizing that the new found medical knowledge and technology might restore physiologic function in some patients but prolonged their suffering with extended and painful death and therefore, should be selectively applied. To counter this dilemma, healthcare providers developed surreptitious ways to justify concept of beneficence and non-malevolence. In Queens hospital ICU in New York, physicians started affixing small purple dots on charts of patient with life limiting illness, as do not resuscitate (DNR) order, which was removed once patient died.[9]In other hospitals physicians conducted slow codes or show codes where CPR was either delayed or ineffectively conducted, so that it was destined to fail. It was done in patients with life limiting illness including persistent vegetative state to fulfil the wishes of surrogates who desired that everything must be done for their loved ones.[10]
MECHANICAL VENTILATION- EMERGENCE OF VEGETATIVE STATE AND BRAIN DEATH
Hesitant invitation to an anaesthesiologist Bjorn Ibsen to solve the overwhelming medical and organisational challenges of the poliomyelitis epidemic of 1952 in Blegdam hospital Copenhagen, resulted in the birth of intensive care medicine and expedited the refinement of blood gas analysers and mechanical ventilators. Over next few years mechanical ventilator was going to present one of the several ethical dilemmas of modern medicine. Adoption of Mechanical ventilators in the role of resuscitation in patients with respiratory failure of diverse etiologies, presented unprecedented phenomenon of dissociation between brain and body. In 1956, Lofstedt and von Reis in Sweden, described six patients supported on mechanical ventilators with deep coma, absent brain stem reflexes, apnoea and preserved cardiac activity. Cerebral angiography showed absence of intracranial blood flow.[11]Autopsy finding of all these patient revealed liquefaction of the cerebral tissue which was named as “respirator brain”, and was considered incompatible with recovery of spontaneous respiration and consciousness.
Three years later in France, Wertheimerand Jouvetdescribed similar cases, equating them to the heart–lung preparation of the physiologists, and proposed to stop mechanical ventilation after a period of 24 hours.[12,13,14]Mollaret and Goulon coined term ‘coma depasse’ (literally state beyond coma) for these patients and commented that patients would develop cardiac arrest if ventilator or vasopressors were stopped.[15]In 1963, Guy Alexandre, surgeon at Catholic University of Louvain, Belgium performed renal transplant from a donor who went into coma depasse. This was the first ever organ transplantation, which was going to be defined in future as heart beating brain death donor transplant.[16]Two years later, term ‘brain death’ was introduced in literature discussing Alexander’s renal transplant, and was formally defined in 1968, in the report of the Ad Hoc Committee of Harvard Medical School.[17]On December 2, 1967 in Cape Town South Africa, a road traffic accident involving a mother and daughter, was going to escalate the clinical, ethical and religious controversy around definition of death, withdrawal of mechanical support and organ transplantation. Myrtle Darvall was declared dead on the site, based on conventional cardiac death criteria, while her daughter Denise was declared dead in hospital, based on neurological criteria. Denise became the brain-dead donor of first human heart transplant performed by legendary Christiaan Bernard.[18]
While controversy regarding divorce between brain and body was only escalating, another disconnection between awareness and awakefullness of consciousness was waiting to present next ethical dilemma of modern medicine. Though, loss of awareness of self and surrounding with preserved wakefulness had been described in ancient Greece and Hippocratic school of medicine, modern resuscitative measures further complicated this disorder, which was described by numerous name in literature. In 1972, Jennett and Plum coined term vegetative state, in a landmark article ‘A syndrome in search of a name’ published in Lancet.[19]Persistent vegetative state was defined if patient remained in this state for one month, while duration of three months for non-traumatic brain injury and one year for traumatic brain injury was defined for permanent vegetative state.
In 1975, 23 years old girl in New Jersey was going to initiate public discourse about autonomy, surrogate decision maker, quality of life and right to die. Karen Ann Quinlan was admitted in ICU after developing respiratory arrest following overdose of illicit drug mixed in alcohol. As she suffered anoxic brain injury, her consciousness did not improved even after five months in ICU. Her parents questioned the futility of artificial support and requested to liberate her from mechanical ventilator. Physicians refused to do so for fear of litigation, as the existing standard of care at that time allowed withdrawal of mechanical ventilation in bread dead patients only.[20]After initial denial from Superior Court, New Jersey Supreme Court granted the request and declared that duty to protect the life is over-ridden by dim prognosis of regaining awareness and therefore, no compelling interest of the State could compel Karen to endure the unendurable. The court further pronounced that her ventilator could be withdrawn without inviting civil or criminal liability, if physicians and hospital’s ethics committee concurred that she is in permanent vegetative state. Karen was extubated and was discharged home in May 1976 but she lived for nearly a decade and died from pneumonia in June 1985.
There had been several other cases of PVS including Nancy Cruzan, Terri Schiavo and Aruna Shanbaug, who presented ethical dilemma regarding futility of artificial nutrition and consequent debate related to ethical issues of extending life vs prolonging death and legal issue of autonomy, advance directive and surrogate decision maker. All these patients died of infection related complication after suffering for considerable period.
MEDICAL FUTILITY
Since the birth of medicine, decision making about treatment lied inherently with the physician whose obligation to act for the good of his patient, formed ethical foundation of this relationship. It was expected from the physician to be firm and assertive but gentle in his approach with the patient. But, this was going to face a radical change in 1960. Revelation of horrendous and unethical medical experiments (syphilis trial in Tuskegee Alabama, Nuremberg Nazi Germany and China) carried out under the knowledge of government agencies in first half of twentieth century, complemented with judicial decisions regarding ethical dilemma arising out of modern resuscitative technologies in later half of last century, firmly established patients legal right of consent and refusal of treatment, ending the millennium old tradition of physician paternalism.[21]However, over next two decades, it appeared that pendulum has stuck to other extreme. Patients or their surrogates started demanding treatments that physicians considered futile or contraindicated, but felt obligated to provide against their professional judgment, to avoid judicial litigations.[22]This gave birth to a virtually unrecognized concept of medical futility in 1987, which was to be talked about in medical writing so strenuously that couple of philosophical ideas inspire.[23]
Futility is derived from Latin word ‘futilis’ meaning leaky. In Greek mythology daughters of Danaus, the King of Argos, murdered their husbands, and were condemned to fetch water for eternity in leaking vessels as punishment. Arriving every time at the destination with empty vessel, defying the intention of the journey to collect water, defines futile as an action which cannot achieve the desired goal of intended action despite repeated efforts.[24]Futility can be described in quantitative and qualitative terms. Quantitative futility is an action with inherent failure, whereas qualitative futility is an inferior result of an intended action.[25]In the writings of the Hippocratic corpus quantitative futility is narrated as, “Whenever the illness is too strong for the available remedies, the physician surely must not expect that it can be overcome by medicine ... To attempt futile treatment is to display an ignorance that is allied to madness”.[26]Plato’s Republic reports qualitative futility as “For those whose lives are always in a state of inner sickness, Asclepius (a legendary physician) did not attempt to prescribe a regime to make their life a prolonged misery ... A life with preoccupation with illness and neglect of work is not worth living”.[27]Understanding the difference between effect and benefit of a treatment is key to the concept of medical futility. Benefit of treatment lies in reducing the suffering of a patient while curing the disease, to prolong meaningful survival. Effective measureable improvement in organ function without appreciable benefit to patient, refutes the basic aim of therapy. Mechanical ventilation of a patient with progressive terminal illness like ALS or geriatric bed ridden patient with end stage disease may improve the gas exchange and physical discomfort of dyspnea but will prolong the suffering of patient and extend painful survival.
Futility must not be confused with hopelessness as the former alludes to objective quality of an action, latter relates to a subjective attitude. Medical futility tries to debunk the dominant societal attitude that describes withholding or withdrawing of treatment as giving up and death as failure of healthcare system. Futility requires that we acknowledge and accept the limitations of healthcare and the inevitability of death. Discussion of medical futility with patients and their family members should strengthen belief and confidence in physicians and nurses, to modify the demand of everything must be done to do not abandon me. It should start with advance decision making for end of life care with active involvement of physicians, nurses and social workers.
LIFE LIMITING ILLNESS
Life limiting illnesses can be classified as irreversible and progressive diseases (for example cancer, dementia, permanent vegetative state, frailty) and diseases with chronic organ failure (for example heart failure, end stage lung diseases like COPD and ILD, chronic kidney diseases, chronic liver disease).[28]
Most of these illnesses follow one of three distinct trajectories of deterioration over time. Malignancies follow a trajectory of steady progression with sudden deterioration in the final weeks and days of life. There is predictable decline in physical health over a period from weeks to months, punctuated by beneficial or harmful effects of curative oncologic treatment. With earlier diagnosis and predictable prognosis, there is time to anticipate and plan palliative and hospice care.Diseases with chronic organ failure follow a path of many years of minor limitation in daily life, intermittent exacerbations with partial recovery or sudden death. Though, these patients may have a longer survival, they suffer intermittent exacerbations and admissions in intensive care units resulting in gradual deterioration in organ function and further limitation in daily activities. Elderly people with cognitive dysfunction like Alzheimer’s dementia and frailty show a trajectory of prolong gradual decline in cognitive and physical functions and die of complications of acute events like fractures or infections.[29,30]
Understanding the clinical trajectory of life limiting illnesses helps clinician in initiating discussion with patients and family regarding optimizing quality of life and accepting a dignified and peaceful death. This would prevent unnecessary hospital admissions, aggressive treatment, extended death on organ support measures and consequent physical as well psychological suffering of patient and relatives.
PALLIATIVE CARE
In 1948, caring for a dying cancer patient named David Tasma in London, a student nurse and social worker Cicely Saunders conceived an idea of founding a home to improve the care of terminally ill cancer patients. David Tasma left her a gift of £500, then a generous amount, and a prophecy “I will be a window in your home”. Advised by a surgeon that it would be difficult for her to transform her idea into reality, as nobody will listen to a nurse, Saunders enrolled as medical students at the age of 33. After qualifying as Doctor, she studied pain management and finally opened st. Christopher’s hospice in south west London in 1967, aimed at patient care, research and education.[31]In 1974, surgical oncologist at McGill University in Canada, coined palliative care to avoid the negativity associated with word hospice.[32]
Historically, palliative care services have focused on patients with incurable cancer, as is expected from its conceptual origin. however, it is now realized that the physical and psychological needs of patients with other life limiting illnesses is not different from those with cancer. Therefore, the provision of palliative care must be based on need, irrespective of diagnosis.[33]Palliative care is holistic care of patients with life limiting illness intended to improve the quality of life of patients and their families through prevention, minimization and relief of physical, psychological and spiritual pain and extends beyond the patient’s death to bereaved family members.[34]
Palliative care focuses on symptom control and improvement of quality of life and includes hospice and end of life care. Palliative care begins when diagnosis of life limiting illness is established and curative treatment is still going on. Gradual transition of care with de-escalation of curative care and escalation of palliative care aimed at symptom relief and well-being of patients.[35]Hospice is part of palliative care, provided in last few months of end of life, when curative treatment is withhold. Hospice is provided at home or hospice centres, but can be administered at hospitals or nursing homes. Hospice is palliative care without curative intent. End of life care is same as hospice care in concept and intent, but bears legal implications regarding ethical dilemma related to do not resuscitate, do not intubate, withholding or withdrawing of treatment, in the absence of advance decision and palliative care planning.
What could be more intriguing that even the words to bring comfort to life and death of patients have created controversy, legal disputes and distrust. Lexicon Do not resuscitate (DNR) arises confusion that it might be successful if attempted, and translates to withholding of life saving measure, eliciting conflict and moral distress among patients and their relatives. To counter the negativity with DNR, several institutions have replaced it with do not attempt resuscitation (DNAR) to emphasise the futility of resuscitation if attempted. Recently, Allow Natural Death (AND) has been suggested to create more positive environment for discussion and easy acceptance. AND brings a notion that patient is dying and all measures are taken to allow dying process to happen naturally and comfortably.[36]
Whatever name we give to withholding of resuscitation in life limiting illness, effective communication is associated with lesser emotional distress, hospitalization and resuscitation and mechanical ventilation at end of life. Clinicians should construct an informed approach to discussion regarding palliative care in life limiting illness, involving advance care planning and goal of care.[37]Palliative care discussion should take into consideration cultural and spiritual perspective of patient and their family.
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