Dying with dignity– free from machines

Prahlad K Sethi 1 and Nitin K Sethi, MD2

 

1 Department Neurology, Sir Ganga Ram Hospital, New Delhi, India

2 Department of Neurology, New York-Presbyterian Hospital, Weill Cornell Medical Center, New York, NY (U.S.A.)

 

 

 

In recent years, rapid advances in medicine and critical care have produced a plethora of procedures (endotracheal intubation, central venous lines placement, tracheostomy) and medical devices (mechanical ventilators, infusion pumps, dialysis machines) to support and sustain life. For physicians, caregivers and most importantly patients it is more important than ever before to make wise decisions about life-sustaining medical treatments. End-of-life (EOL) decision making process though is complex and involves difficult decisions for all concerned (patients, caregivers, physicians and nurses).

 

The Hippocratic Oath requires a newly minted physician to swear by the healing gods of Apollo, Asclepius, Hygieia and Panacea that he/she shall withhold certain ethical standards. The classical version of the oath hints at applying for the benefit of the sick, all measures that are required/available. Physicians hence by virtue of their training are programmed to support life by all measures at their disposal. The modern version of the oath advices physician to do the above while avoiding the twin traps of overtreatment and therapeutic nihilism. Unfortunately in medical schools across India, physicians in training are not taught how to avoid these two traps. When does a physician say no more? How does he communicate the futility of further medical treatment to the patient and the caregiver/family? There are no simple answers to the above questions. Disagreement about the goals of treatment between patient, family members and physician providers leads to misunderstanding and distrust.

 

 

 

 

 

 

For physicians it is important to treat the patient and family members humanely as EOL approaches. This begins with a clear explanation of the disease process and prognosis to the patient and his family. What is the life expectancy, what can the patient and family expect as the disease progresses? Will the various procedures and devices available to support and sustain life, have a meaningful outcome in the long term. For a physician it is important to prognosticate on not just life expectancy but also on the quality of life after these procedures/ interventions. Will the patient be able to talk, eat, walk independently or will he be bed bound, dependent on a dialysis machine, with a tracheostomy and feeding tube? All these questions no matter how difficult, need to be addressed with the patient and his family.  In the movie The Wrath of Khan (1982), Spock in his usual logical way says “the needs of the many outweigh the needs of the few” (“or the one”). Doctors have a moral obligation to not just the patient in front of them but also to the larger society. They have to wrestle with questions whether the medical resources currently devoted to their patient could be better utilized for care of other potentially salvageable patients. But a doctor should never forget that in the  patient or family member’s eye “the needs of the one may outweigh the needs of the many”.

 

 

 

 

 

 

 

 

 

 

 

 

Case-1 A-85-year old lady, diagnosed with a brain tumor (glioma)  3-4 months back and on antiepileptics, presented to the casualty with recurrent seizures. On presentation, she had a Glasgow Coma Scale (GCS) score of 3. She was loaded with IV antiepileptics. Though she warranted admission to the intensive care unit, she was admitted to the neurology floor respecting the wishes of her family who declined intubation and mechanical ventilation. Surprisingly her sensorium improved the next day and she started to communicate and accept orally. She though again declined. Respecting her and the family’s wishes, palliative care and comfort care measures were instituted. She went into a sudden cardiorespiratory arrest on day 3 and passed away peacefully with her family by her side.

 

Case –2: A-87-year old lady, known case of hypertension with coronary artery disease (CAD) status-post coronary artery bypass grafting (CABG) and angioplasty came to our casualty with sudden loss of consciousness. On examination, she was found to have left-sided hemiparesis with poor GCS score. CT head revealed sulcal effacement with early developing hypodensity in large area of right middle cerebral artery (MCA) territory. MRI brain confirmed large right hemispheric infarct and left posterior cerebral artery (PCA) territory infarct. After the poor prognosis was explained to the relatives, they decided to pursue palliative care. Do not intubate (DNI) and do not resuscitate (DNR) orders were signed. Patient went into cardiac arrest and passed away.

 

Case-3: A-86-year old bed bound male, known case of advanced Parkinson’s plus disease with dementia, presented with history of decreased oral intake, difficulty breathing, fever and altered sensorium for 2 days. He was encephalopathic with bilateral aspiration pneumonia and sepsis. After the poor prognosis was explained to family members, they elected against intubation and mechanical ventilation. He was managed on the neurology floor with oxygen, non-invasive mechanical ventilation (BiPAP), nebulization, chest physiotherapy with periodic suctioning along with IV antibiotics and other supportive care treatments. Due attention was given to hydration and nutrition status. Five days later, he developed sudden cardiorespiratory arrest and passed away.

 

Case-4: A- 61-year old lady, having multiple co morbidities (old stroke with right sided hemiparesis, diabetes, hypertension, interstitial lung disease, old pulmonary tuberculosis, chronic liver disease with anemia) presented with complaints of diarrhea, fever and breathlessness for 2 days. She was found to have bilateral pneumonia with hypoxemia. After the poor outcome was discussed with relatives in terms of possibility of difficulty weaning off from ventilatory support, they elective to pursue comfort care measures. Patient was managed with IV antibiotics, antihypertensive, antidiabetic and other supportive treatments along with non-invasive (BiPAP) ventilation. She passed away 6 days after admission with her family by her bedside.

 

 

 

Dying with dignity

 

On March 7th, 2011, the Law Commission of India, Ministry of Law and Justice in a landmark judgment recommended to the Government of India that terminally ill patients should be allowed to end their lives. By passing this judgment, India joined a small select group of nations that allow euthanasia in some form or other. This judgment has led to a vigorous debate in the media about euthanasia and the right to die. Just what is euthanasia and what is the difference between active and passive forms of euthanasia? The word euthanasia is derived from Greek: eu ‘well’ + thanatos ‘death’. The Oxford dictionary defines euthanasia as the practice of killing without pain a person who is suffering from a disease that cannot be cured1. The Stedman’s medical dictionary gives a more comprehensive definition and defines it as the act or practice of ending the life of an individual suffering from a terminal illness or an incurable condition, as by lethal injection or the suspension of extraordinary medical treatment2.

Active euthanasia (as for example mercy killing via a lethal injection or by giving an overdose of pain killers and sleeping pills) is currently illegal in almost all countries of the world. In most countries a physician who assists in active euthanasia can be prosecuted, lose his license to practice medicine and can even be jailed. The patient requesting active euthanasia can also be prosecuted. Put in another way the law as it stands now condemns a physician for actively killing someone (even though the patient requests it) but does not condemn a physician for failing to save a terminally ill patient’s life (aka active euthanasia is illegal but not passive euthanasia). Netherlands and Switzerland are two countries where active euthanasia is practiced openly though the medical, legal and social implications remain active topics for both professional and public debate. The courts in these two countries have allowed physicians to practice active euthanasia under certain strict conditions. In these countries too physician assisted euthanasia (the physician prescribes the lethal medication but it is the patient who self-administers the lethal medication) is more widely accepted (both by the public at large as well as ethically and morally by the physician community) than active euthanasia (physician administers the lethal injection himself). In Netherlands the following guidelines if followed strictly have traditionally protected physicians from prosecution: the patient’s wish to die must be expressed clearly and repeatedly, the patient’s decision must be well informed and voluntary, the patient must be suffering intolerably with no hope for relief however the patient does NOT have to be terminally ill (mental suffering is acceptable as a reason for performing assisted suicide and euthanasia in a patient who may be physically healthy), the physician must consult with at least one other physician, the physician must notify the local coroner that death resulting from unnatural causes has occurred 3.

There is an ever increasing demand for the “right to die with dignity”. In an essay in the International Herald Tribune the right to die was defined as follows: “every person shall have the right to die with dignity; this right shall include the right to choose the time of one’s death and to receive medical and pharmaceutical assistance to die painlessly. No physician, nurse or pharmacist shall be held criminally or civilly liable for assisting a person in the free exercise of this right.” A fundamental thought underlying the right to die is the belief that one’s body and one’s life are one’s own, to dispose of as one sees fit. So theoretically if one wants to commit suicide one should have the freedom/ right to do so. Opponents of the right to die point out that legalizing the right to die may lead to irrational suicides. Different religions have different thoughts of view when it comes to the right to die. Hinduism in fact accepts the right to die for those suffering from terminal illnesses allowing death through the non-violent practices of fasting to death (Prayopavesa). Some Jains practice Santhara by which they seek voluntary death through fasting. Since the decision to practice Santhara is taken while one possesses a sound mind and is aware of the intent it cannot be equated to suicide which is usually carried out in haste when a person is in the midst of depression they point out.

 

 

A form of passive euthanasia and dying with dignity by withholding extraordinary life supporting measures (such as the decision to intubate and mechanically ventilate a terminally ill patient) is already routinely practiced in critical care units across India on a daily basis. In our experience once the hopelessness of the medical situation and the gravity of the illness is explained to the patient and the relatives, they comprehend and at times request discharge from the hospital so that the patient can take his last breath at home surrounded by family and friends. It is only when disagreements about the need, timing or mode of termination of care arise among family members or when a conflict of interest is perceived by the family members with respect to the treating physicians (‘they want him to die so that they can have the bed/ ventilator’) that these cases reach the attention of the media and the public at large such as in the case of Aruna Shanbaug.

 

The right to die with dignity is a fundamental right of every person. The terms of this dignified death may vary from patient to patient. For some it may be dying at home surrounded by close family and friends, others in the hospital might wish to avoid the “trauma” of intubation and mechanical ventilation but continue with intravenous hydration and other comfort care measures, still others may wish for everything to be done. Doctors should explore patient and family’s wishes on these issues and respect them.

 

 

 

 

In the words of Frank Sinatra from his famous song “My way”…

 

“And now, the end is near
And so I face the final curtain
My friend, I’ll say it clear
I’ll state my case, of which I’m certain

I’ve lived a life that’s full
I’ve traveled each and every highway
But more, much more than this
I did it my way”

 

Men like “Tiger” Nawab Pataudi and Dara Singh not only lived their lives “their way” but also died on their own terms-with dignity.

 

Dying can be a peaceful event or a great agony when it is inappropriately sustained by life support.” –

Roger Bone

 

 

 

References

 

  1. Oxford dictionary online at http://oxforddictionaries.com
  2. Stedman’s Online Medical Dictionary at http://www.stedmans.com
  3. http://www.libraryindex.com/pages/573/Euthanasia-Assisted-Suicide

 

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Medical, legal and ethical issues surrounding brain death-the physician’s perspective

Medical, legal and ethical issues surrounding brain death-the physician’s perspective

 

Nitin K Sethi1, Prahlad K Sethi2

 

1New York-Presbyterian Hospital, Weill Cornell Medical Center, New York, NY (U.S.A.)

2Department of Neurology, Sir Ganga Ram Hospital, New Delhi India

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Consider this scenario. A-46-year-old lady suffers an out of hospital cardiac arrest. Cardiopulmonary resuscitation is initiated on the scene by a passerby and later by emergency medical services personnel and return of spontaneous circulation is documented in 30 minutes. After arrival in the hospital hypothermia protocol is instituted. Five days later she remains comatosed and neurological examination is consistent with brain death. Orders are given for medication and ventilatory support to be withdrawn but family refuses saying that she is not dead as long as her heart is still beating. An ethics consultation with the family fails to change their beliefs about brain death leading to a standoff between family and the medical team. What are the clinician’s medical, legal and ethical responsibilities in such cases, not just to the patient but also to the grieving family and the larger society?

Death may be defined as the end of life; the total and permanent cessation of all vital functions of an organism. But this simple definition of death is imbued with strongly held social, cultural and religious beliefs of the patient, the family and our society. Different religions view death and afterlife differently. Hinduism and Buddhism believe in the doctrine of reincarnation. Based on one’s karma either one attains “nirvana” never to be born again and to be finally free of the death/rebirth cycle (moksha)or following death the “atma” (soul) inhabits a new “chola” (body). This is against the Christian held belief of either going to heaven or hell after death. So there exists religious objections to the diagnosis of brain death and in some religions death is thought to have occurred when the heart stops beating. This cardiac definition of death remains far simple to understand by the public at large as compared to brain death. It is readily accepted by family members allowing the process of mourning to begin on the departure of a loved one. Brain death on the other hand is not so readily accepted by family members. How can their loved one be dead when they can still feel, hear and see (on the cardiac monitor) a reassuring heart beat? Terms like apnea test positive, absent brainstem reflexes and flat electroencephalogram make little sense. How can the doctors be so sure that their daughter or son shall never regain consciousness again? Questions like these place a tremendous burden on the family when they are approached for permission to discontinue ventilation. The symbolism of a beating heart slowly flat lining on the cardiac monitor after discontinuation of ventilation is not lost on them. 

From a medical and legal perspective brain death is now a well defined entity. After brain death is confirmed, the law allows (and protects) physicians to discontinue medication and ventilatory support. In many states in the United States and in countries around the world, physicians are not mandated to consult the family prior to withdrawing ventilation though it is recommended that they should. So at least for clinicians there is now little to no ambiguity when it comes to medical (brain death testing is standardized though there remains practice variability in brain death determination among different countries of the world or even among different academic centers in the same country) and legal issues surrounding brain death. Ethical issues surrounding brain death though continue to confront us. Confirmation of brain death makes it obligatory for clinicians to cease all treatment but what if the family refuses to accept the diagnosis. Should we refuse to treat further (after all the patient is dead) or should we continue to treat the dead patient in deference to the family’s wishes? What if we have another alive but critically ill patient who needs that intensive care bed or the ventilator? To who we owe our greatest responsibility-the dead patient, the grieving family or the living critically ill patient who shall die if he does not get care? What to do when brain death is determined in a pregnant woman but whose fetus still has a heartbeat? 1Do we cease treatment (after all the patient is dead) or do we continue to maintain ventilation in this dead patient until the fetus is viable outside the womb? We also have to contend with ethical issues surrounding harvesting of organs from a brain dead patient to extend the life of others. Again to whom we owe greater responsibility-the brain dead patient, the grieving family or the patient in desperate need of that organ?

Determination of brain death raises complex medical, legal and ethical dilemmas for clinicians highlighting the need for medical ethics education during residency training.

 

References

 

  1. Gostin LO. Legal and ethical responsibilities following brain death. JAMA 2014 Jan 24 [Epub ahead of print]

 

 

 

Euthanasia and the right to die

 

Euthanasia and the right to die

 

Prahlad K Sethi1, MD and Nitin K Sethi 2, MD

 

Departments of Neurology Sir Ganga Ram Hospital, New Delhi, India 1 and New York-Presbyterian Hospital, Weill Cornell Medical Center, New York, U.S.A 2

 

Address correspondence to:

Prahlad K Sethi, MD

Emeritus Consultant

Department of Neurology, Sir Ganga Ram Hospital

Old Rajender Nagar

New Delhi, India 110060

President Brain Care Foundation of India

http://braincarefoundation.com

http://braindiseases.info

On March 7th, 2011, the Law Commission of India, Ministry of Law and Justice in a landmark judgment recommended to the Government of India that terminally ill patients should be allowed to end their lives. By passing this judgment, India joins a small select group of nations that allow euthanasia in some form or other. This judgment has led to a vigorous debate in the media about euthanasia. Just what is euthanasia and what is the difference between active and passive forms of euthanasia? The word euthanasia is derived from Greek: eu ‘well’ + thanatos ‘death’. The Oxford dictionary defines euthanasia as the practice of killing without pain a person who is suffering from a disease that cannot be cured1. The Stedman’s medical dictionary gives a more comprehensive definition and defines it as the act or practice of ending the life of an individual suffering from a terminal illness or an incurable condition, as by lethal injection or the suspension of extraordinary medical treatment2.

            Before we dwell deeper into the subject it is important to understand a few medical terms namely the difference between brain dead (BD) and persistent vegetative state (PVS). By all accounts Aruna Shanbaug has been in a PVS for the past thirty odd years. When she was strangulated her brain was deprived of precious oxygen and blood leading to what we neurologists refer to as anoxic encephalopathy. Anoxic encephalopathy may also occur following other causes of cardiac and respiratory arrest. Most patients do not survive the initial anoxic insult to the brain, either their heart naturally stops after sometime (cardiac death ensures) or their brain dies (brain death ensures). We shall come to brain death later. Some patients though do survive thanks in no small part to sophisticated life sustaining measures such as ventilators and advances in critical care medicine. If these patients are followed the outcomes are varied. Some may “wake up” and start interacting with the environment (talking, responding appropriately to pain and so forth). Others may “wake up”, open their eyes and even yawn but when closely assessed have no meaningful interaction with their environment. It is these patients who after a period of observation are determined to be in a PVS. A person who is in a PVS shall never talk, walk or interact with his loved ones. In a way he is a vegetable. PVS is very different from BD. For a person to be brain dead certain strictly defined criteria need to be met. These criteria with minor variations such as length of observation, interval between repeat testing, number of physicians needed to certify BD are essentially similar across the world. The diagnosis of brain death is primarily clinical meaning that it is made after a thorough neurological examination conducted by a trained physician preferably one skilled in neurosciences (neurologist or neurosurgeon). In cases where for some reason the clinical examination is incomplete or in doubt, confirmatory tests such as an electroencephalogram (EEG) are available to confirm BD.

The question of passive euthanasia may arise in patients who are in PVS. It may be requested by one of the family member to “end the patient’s suffering”. Active euthanasia on the other hand is usually requested by a patient who is terminally ill and in pain such as those with advanced cancer or those suffering from progressive neurodegenerative conditions such as amyotrophic lateral sclerosis (ALS) which in its final stages leads to difficulty in breathing. Terminal patients with ALS are further unable to clear their own secretions and are unable to swallow or cough. These patients may request their doctor for a “mercy killing”. Please kill me and end my suffering and pain. A point to clarify here is that the question of euthanasia whether active or passive does not even arise in a patient who is brain dead. Brain death is now around the world medically and legally synonymous with cardio respiratory death. Once a patient is declared brain dead, he is dead. You do not have to wait for the heart to stop before you can say the patient is dead. As someone said rightly “you cannot die twice-once when the brain stops and once when the heart stops!”3. Hence in a brain dead patient, the law allows the physician to stop the ventilator and discontinue all other critical care support4. Remember the patient is already dead so there is no need for the ventilator to keep running. Hence the question of euthanasia whether active or passive is mute in a BD patient. Usually after a patient is declared BD the family is approached to consider organ donation. If the family decides to donate organs, the “dead patient” is kept on the ventilator till the organs can be harvested. If the family decides against organ donation, the ventilator is stopped and the body handed over to the next of kin.

So now let us move on to the topic of euthanasia. Active euthanasia (as for example mercy killing via a lethal injection or by giving an overdose of pain killers and sleeping pills) is currently illegal in almost all countries of the world. In most countries a physician who assists in active euthanasia can be prosecuted, lose his license to practice medicine and can even be jailed. Put in another way the law as it stands now condemns a physician for actively killing someone (even though the patient requests it) but does not condemn a physician for failing to save a terminally ill patient’s life (aka active euthanasia is illegal but not passive euthanasia). Netherlands and Switzerland are two countries where active euthanasia is practiced openly though the medical, legal and social implications remain active topics for both professional and public debate. The courts in these two countries have allowed physicians to practice active euthanasia under certain strict conditions. In these countries too it is usually physician assisted euthanasia (the physician prescribes the lethal medication but it the patient who self administers the lethal medication) is more widely accepted (both by the public at large as well as ethically and morally by the physician community) than active euthanasia (physician administers the lethal injection himself). In Netherlands the following guidelines if followed strictly have traditionally protected physicians from prosecution: the patient’s wish to die must be expressed clearly and repeatedly, the patient’s decision must be well informed and voluntary, the patient must be suffering intolerably with no hope for relief however the patient does NOT have to be terminally ill (mental suffering is acceptable as a reason for performing assisted suicide and euthanasia in a patient who may be physically healthy), the physician must consult with at least one other physician, the physician must notify the local coroner that death resulting from unnatural causes has occurred 5.There is an ever increasing demand for the “right to die with dignity”. In an essay in the International Herald Tribune the right to die was defined as follows: “every person shall have the right to die with dignity; this right shall include the right to choose the time of one’s death and to receive medical and pharmaceutical assistance to die painlessly. No physician, nurse or pharmacist shall be held criminally or civilly liable for assisting a person in the free exercise of this right.” A fundamental thought underlying the right to die is the belief that one’s body and one’s life are one’s own, to dispose of as one sees fit. So theoretically if one wants to commit suicide one should have the freedom/ right to do so. Opponents of the right to die point out that legalizing the right to die may lead to irrational suicides. Different religions have different thoughts of view when it comes to the right to die. Hinduism in fact accepts the right to die for those suffering from terminal illnesses allowing death through the non-violent practices of fasting to death (Prayopavesa). Some Jains practice Santhara by which they seek voluntary death through fasting. Since the decision to practice Santhara is taken while one possesses a sound mind and is aware of the intent it cannot be equated to suicide which is usually carried out in haste when a person is in the midst of depression they point out.

So euthanasia remains a very complex topic with medical, legal and social implications. A concept which is virtually non-existent in India but quite common in the United States is the concept of a living will. A living will is an advance directive and a legal document in which a person makes known his or her wishes regarding life prolonging medical treatments. In a living will a person indicates beforehand which treatments he would or would not want to receive in the event he suffers a terminal illness or is in a PVS and is unable to speak and make decisions for himself. So it reasons that the living will does not become effective till the patient is incapacitated. As long as the patient can make decisions with a sound mind he can decide what treatments he wants or does not want. However after he becomes incapacitated or enters a PVS the living will comes into play. If in the living will he has documented that in the event of suffering a cardiac arrest in the background of a terminal illness he would not want to be resuscitated and put on a ventilator, his wishes shall be respected by his treating physicians. A comprehensive living will can give a patient substantial autonomy over what happens to their body at the final hour of their terminal illness.

We wish to highlight here that passive euthanasia in the form of withholding extraordinary life supporting measures (such as the decision to intubate and mechanically ventilate a terminally ill patient) is already routinely practiced in critical care units across India on a daily basis. In our experience once the hopelessness of the medical situation and the gravity of the illness is explained to the relatives, they usually comprehend and request discharge from the unit so that the patient can take his last breath at home surrounded by family and friends. It is only when disagreement about termination of care arises among family members or when a conflict of interest is perceived by the family members with respect to the treating physicians (they want him to die so that they can free the bed/ ventilator) that these cases reach the attention of the media and the public at large such as in the case of Aruna Shanbaug. We hope that these misconceptions about passive euthanasia shall abate with better public education. The judgment on March 7th is indeed a landmark one and its implications on the Indian health system in the coming years shall be profound and keenly watched by all.

References

  1. Oxford dictionary online at http://oxforddictionaries.com
  2. Stedman’s Online Medical Dictionary at http://www.stedmans.com
  3. Sethi NK, Sethi PK. Brainstem death-Implications in India. J Assoc Physicians India.2003 Sep; 51:910-1.
  4. Sethi NK, Sethi PK. Brain death and decision dilemmas. Neurosciences Today. Jan-Mar 2003; 7:27-28.
  5. http://www.libraryindex.com/pages/573/Euthanasia-Assisted-Suicide

A neurologist reflects…..

Nitin Sethi, MD

Assistant Professor of Neurology

New York Presbyterian Hospital

Weill Cornell Medical Center

New York, NY 10065

 

Saturday morning finds me in my favorite  coffee shop in the West Village reflecting on the week that went by.  It was a long week, even by my standards and I am happy to have the time to sit down and reflect on it. The week also saw me confronted with a moral and ethical delimma. Electroencephalogram (EEG) (this is a test to look at the brain waves) monitoring was requested for prognostication purposes on a patient in the intensive care unit. Patient had suffered multiple strokes and was on a mechanical ventilator. The purpose of getting the EEG was to get an idea of the extent of his cerebral dysfunction. His EEG showed some slowing of brain waves but otherwise surprisingly looked “good” given the extent of pathology in the brain and the fact that he was comatosed.

His wife tearfully was considering termination of care. Patient had a living will, in which he had clearly made his wishes apparent that he did not wish to live in a state where he was dependent on others, bed-bound and unable to participate in activities of daily living. Objectively as a doctor I knew he was not brain dead, my neurological examination told me that. I did know that his chances of a meaningful neurological recovery were very poor and likely he was heading to a persistent vegetative state (read more about PVS on my website http://braindiseases.info).

His wife had justifiably struggled to come to the decision of termination of care of her beloved husband. Next day when she finally made her decision to terminate care, the patient was noted to wince to pain as she walked into his room…..

There started the moral and ethical delimma for everyone, his wife as well as us doctors. Can we ever prognosticate sufficiently about the extent of someone’s neurological recovery? Can we ever be 100% sure about the extent of someone’s neurological recovery especially if we are attempting to make that decision soon after the neurological insult. Various neurological papers have attempted to answer this vexing question. We do have some leads. We know that a patient who loses brainstem reflexes such as pupillary light reflex (shine a light into the pupils and the pupils constrict) shall have a universally poor outcome. Tests like MRI brain, EEG and evoked potentials further help us in prognostication.

But what does meaningful neurological recovery  mean to the patient, his family and to us doctors? To us doctors it means being independent in activities of daily living, a patient conscious and alert and productive member of society. We have scales to help us grade this recovery. But meaningful neurological recovery might have a completely different meaning for the patient and his family. For his wife, the very fact that her husband is alive, someone she can reach out and touch may mean the world. True along with that shall come the burdens of caregiving.

Now what about the patient? True our patient made a living will, a will made when he was fully alert and in control of his senses. He made his choices known. But did he plan for a situation like this?  He is critically ill and the doctors are not certain what his chances for a meaningful neurological recovery are. Would he have liked to have his life sustanied if the answer was not black or white but a shade of grey?

The more I reflect on this, the more I realise that life is never simple and there are seldom easy answers. The struggle continues…..

The dead donar rule and how it applies to organ donation after cardiac death

The dead donar rule and how it applies to organ donation after cardiac death

 

Nitin. K. Sethi, MD

 

The August 14th issue of the New England Journal of Medicine has a series of perspectives on organ transplantation after cardiac death and how it conflicts ethically with the dead donar rule. It is a fascinating and at the same time complex ethical problem and that prompted me to write this post.

The dead donar rule simply states that a patient must be declared dead before any of the vital organs can be removed for organ transplantation. Death can be defined in two ways. Either it is the irreversible cessation of cardiorespiratory function or simply put when your heart stops you die!!!. Mind you the important word here is irreversible. Death can also be defined as the irreversible cessation of brain function, this is the concept of brain death, a concept now well accepted by caregivers and doctors alike. (See my earlier post on brain death at http://braindiseases.info). In the case of brain death, the patient’s heart may be beating, respiration supported by a ventilator but the brain is so badly damaged that there is no chance of a meaningful neurological recovery.

That all makes sense till now. Ethical problems arise when the dead donar rule is applied to organ donation after cardiac death especially with respect to cardiac transplantation after cardiac death. Hmm getting confused? Let me explain with the help of an example.

Let us take the example of an infant who is overwhelmly sick, the family wants to donate organs including the heart. Studies have shown that the human heart does not auto-resuscitate (meaning start on its own) after 5-10 minutes of cardiac arrest. It does not auto-resuscitate but can be resuscitated by doctors by giving drugs like atropine or by giving electric shocks to it. The infant’s heart stops, the doctors wait for 5 minutes, at times 2 minutes sometimes even less to document that it does not auto-resuscitate (the longer the heart is not beating and not getting blood, it starts to get damaged). The heart is then taken out and transplanted into another infant’s chest cavity. The doctors then resuscitate the heart and restart it in the transplanted infant.

All good you may say but how can you declare the first infant dead on the basis of irreversible loss of cardiac function when that very heart has been transplanted and has successfully functioned in the infant who received it. The dead donar rule gets violated, the first infant was never really dead if the loss of cardiac function was reversible.

As you can imagine opinions are sharply divided on this subject. Some feel that the dead donar rule is violated, while others try to justify it by saying that a heart cannot be legally restarted if resuscitation has been refused by the family in case of infants and minors, so its loss of function meets the defination of irreversibility as commented so eloquently by Drs Truog and Miller in their New England Journal of Medicine article.

I would encourage my readers to read more about this topic in the New England Journal of Medicine or online and I welcome their comments.

Brain death

Today I was called to conduct a brain death evaluation on a patient in the medical intensive care unit. As I spoke with the family I again realised how alien  this concept of death is. How very hard it is for the family to comprehend what brain death means.

Doctor Sethi his heart is beating, the machine (ventilator) is moving his chest, how can he be dead?”

So what exactly is brain death?  The old dictionary defination of death is relatively simple to understand and comprehend by the lay person. Death is the cessation of cardiorespiratory function. When your heart stops you die. Everyone understands this. But as medicine advanced in the 1960’s we reached the stage when we were able to sustain and keep patients alive with advanced cardiorespiratory support. We had ventilators now which did the work of breathing and good medicines to sustain the blood pressure. It was at this time that the need was felt to have an alternative defination of death. The reason was that there were many patients who were on ventilators and their heart was strong, but who had suffered so much damage to the brain that their chance of a meaningful neurological recovery was zero.

Also at this time transplant medicine was kicking off and there was need for organs for transplantation. A brain dead patient usually is a good candidate for organ harvesting because the heart is still perfusing organs like kidneys etc. That is when a new defination of death was born: brain death.

So what exactly is brain death? Well like I said earlier a brain dead patient is one whose brain has suffered irreversible damage and there is zero chance of a neurological recovery. The heart may be beating on its own and the respiration may be aided by a ventilator but the brain is no more. Usually these are patients who have suffered head trauma or a major bleed or stroke in the brain such as a massive subarachnoid hemorrhage.

So how is the diagnosis of brain death made? Well first and foremost the diagnosis of brain death is a clinical diagnosis and you do not need any confirmatory tests unless there is doubt or because the clinical examination is hampered by something. The doctor who usually does the clinical examination testing is one trained in neurosciences either a neurologist or a neurosurgeon. What we usually test for is the integrity of the brain stem (the lower part of the brain which controls the vital functions of the heart and respiration). We do this by checking the brain stem reflexes, are they intact or not?

Do the pupils react to light or they fixed and dilated?

Does the patient have a corneal reflex?

Do they have spontaneous respiration when we disconnect them from the ventilator? This is an important test called apnea test.

Do they gag when we try to suction them?

Do they have an oculocephalic reflex?

Do their eyes move when we put cold water into their ears (this is a test called cold caloric testing)?

We go over the entire chart to make sure that the patient is not on any medication (sedatives) or has any other condition that might explain his current examination. We make sure that the patient is not hypothermic.

If all the above conditions are met then the patient meets the criteria for brain death. I want to add the criteria for brain death vary from country to country and the protocol may vary from one hospital to another. In some countries four doctor are needed to make a diagnosis or brain death. One of them has to be a neurologist or neurosurgeon, the other a doctor who is not involved in the active care of the patient, the third is the doctor involved in the care of the patient and the fourth is usually the medical superintendent of the hospital (like I said the criteria vary from country to country).

The criteria also vary with regards to the time of observation between two examinations of brain death. In some countries the examination has to repeated to confirm there is no change in the findings after 6 hours and in others this time is 12 to 24 hours.

Need for confirmatory testing: as I stated at the onset, brain death is a clinical diagnosis and no confirmatory testing is required. In situations where we cannot do some of the tests like the apnea test or the diagnosis is in doubt or the family requests it, confirmatory testing may be done. The most common test done is an EEG (this EEG is done under specific criteria and should show no activity above 2 microvolts). Other confirmatory tests include angiogram, transcranial doppler or a radioisotope scan.

Once the diagnosis of brain death is confimed the patient can be disconnected from the ventilator legally (the law gives the doctor permission to do that). Of course we try to make the family understand and be part of the final decision of removing from the ventilator.

IF YOU ARE BRAIN DEAD, YOU ARE DEAD. YOU CANNOT DIE TWICE, ONCE WHEN YOUR HEART STOPS AND ONCE WHEN YOUR BRAIN STOPS.

I hope I have made some sense of this technical topic for my readers

Personal Regards,

Nitin Sethi, MD