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|Year : 2021 | Volume
| Issue : 4 | Page : 792-796
Good Death in Neurological Practice
Department of Telemedicine, Apollo Telemedicine Networking Foundation, Chennai, Tamil Nadu, India
|Date of Submission||31-Jul-2020|
|Date of Decision||31-Oct-2020|
|Date of Acceptance||05-May-2021|
|Date of Web Publication||2-Sep-2021|
Prof. Krishnan Ganapathy
Apollo Telemedicine Networking Foundation, C/O, Apollo Main Hospital, No. 21, Greams Lane, Off Greams Road, Chennai - 600 006, Tamil Nadu
Source of Support: None, Conflict of Interest: None
Background: Clinicians in neurological practice, particularly surgeons, encounter more deaths than most other specialists.
Objective: This communication reviews the literature on “good death” and extrapolates the observations and inferences to neurological practice. Changes in approaches to “good death” in the COVID-19 era (coronavirus disease 2019) are also discussed.
Materials and Methods: The author, over a 40-year period, has come across 2,500 deaths in a government, trust, and corporate hospital in Chennai, India. Retrospectively, the author questions if, in spite of his conservatism and obsession with quality of life, he should have taken proactive measures to also ensure a good quality of death.
Results and Conclusion: In the background of the lessons learned in a metro, across various socioeconomic groups and with varied access to technology, the author concludes that ensuring “good death” should also fall within the domain of neurologic practice.
Keywords: Good death, good death and COVID-19, neurological practice, quality of deathKey Message: As more deaths occur in neurological practice, it is essential that neurosurgeons and neurologists become aware of their responsibility to also help their patients attain “good death,” particularly in the pandemic era.
|How to cite this article:|
Ganapathy K. Good Death in Neurological Practice. Neurol India 2021;69:792-6
| » Introduction|| |
Until six decades ago, death was considered a specific point in time – the moment at which life ends. Today, it is accepted that death is an ongoing process – a series of events culminating in irreversible cardiac arrest. Perceptions of a health care provider toward death change as they age. At the peak of one's neurosurgical career, the emphasis is primarily to prevent mortality, taking every possible measure. Saving life is the reason for our existence. How often did we ask ourselves then “At what cost?” With time being a major constraint, how often did we spend quality time with the caregivers of an individual whose passing away was highly likely, if not imminent? Did we discuss end-of-life scenarios? Did we find out the earlier personality of the individual and what they would have wanted in this situation? Was there a living will available? We were so engrossed in providing intensive critical care, adjusting ventilator settings, correcting electrolytes, repeating imaging studies, documenting the various pathophysiological changes occurring in the nervous system, and protecting ourselves by getting multiple second opinions that we hardly ruminated on the quality of death. Some were paranoid about good quality of life and unknowingly, perhaps inadvertently, deprived the patient of access to “aggressive, heroic” measures.
| » Death in Neurological Practice|| |
Gourie-Devi in 2014 estimated that the major neurological disorders alone, excluding neurotrauma and infections, would be about 30 million in India. If one takes into account the acute serious head injuries, neurovascular diseases, malignant brain tumors, degenerative disorders, and infections of the nervous system, the daily neurological deaths would be several thousands. Neurological deaths for those older than 75 years of age rose to 117% and 143% between 1989 and 2010 for males and females, respectively, outside of the United States. In the United States, the increase was 368% for men and 663% for women. This dramatic rise was not found for other diseases. A study of deaths associated with neurological conditions in England between 2001 and 2014 showed a steady increase of 39%. About 49% of deaths in hospitals and 26% in care homes mentioned neurological conditions; 18% of neurological deaths occurred at home, 5% in a hospice, and 2% in another place. The Global Burden of Disease international project has confirmed that during the past 25 years, neurological disorders (Alzheimer's disease, Parkinson's disease, stroke, and epilepsy) have increased substantially. Neurological disorders account for 16.8% of the global deaths. Longer life expectancy has led to an increase in dementia and other degenerative diseases. Improved life standards and health care are postponing death and often increasing suffering. Neurological practice, therefore, requires judgment, wisdom, and compassion, not just technical mastery of future-ready technology. Management “options” have greatly increased. The problem of therapy is also a problem of choice. Should not sufficient weightage be given to patient's desires and ethical, social, financial, and humanitarian considerations? How much responsibility does the domain expert have in the management of the terminally ill, particularly in an acute or hyperactive acute time frame? Is the end-of-life care only for chronic disabling neurological conditions? Many neurosurgical conditions such as head injuries, hypertensive brain hemorrhage, and aneurysmal subarachnoid hemorrhage occur in “normal” young individuals. Neither the clinician nor the family initially discusses end-of-life management in malignant brain tumors, multiple secondaries, and other conditions where morbidity and mortality are significant. Patients with cancer dying in a hospital (36%) or intensive care unit (ICU; 8%) often receive aggressive care at the end of life, perhaps decreasing the probabilities of a good death. Bereaved caregivers are at an increased risk of developing subsequent psychiatric illness. The primary consultant is oblivious of this. Explaining the concept of brain stem death is difficult when the relatives see the monitor displaying a good pulse rate and normal blood pressure. It is often not realized that “grief counseling” in India has medicolegal issues. The patient cannot be taken off life support systems till brain death is declared. Brain death declaration at present is allowed only when consent has been obtained for organ donation. Exposing neurosurgeons and neurologists to the basics of palliative care may help ensure better end-of-life management. Understanding psychological, social, and spiritual needs at this time is critical, as is developing skills in grief counseling.
| » Personal Clinical Illustrations from Neurosurgical Practice|| |
How does one discuss “good death” with a just married wife, when her husband has had a devastating aneurysmal subarachnoid hemorrhage? How does one inform a retired professor of surgery that he has multiple secondaries not only in the brain but also elsewhere and proton therapy will, at the best, only postpone the inevitable? A 92-year-old woman with bilateral hemiplegia is strongly encouraged to be taken home after the diagnosis is confirmed with imaging studies. She also has multiple hip fractures secondary to the trivial fall. Two months elapse. The patient is in coma for 4 weeks. Morphine patches are being used for analgesia. The 70-year-old son cannot withstand her suffering. Morally and ethically, withdrawing Ryle's tube feeding may not be unacceptable. Legally, at that time, the decision could still have been questioned.
| » What Is Good Death?|| |
The term good death was introduced in the 1960s. A good eath implies that treatment preferences, quality of life, and maintenance of dignity have been as per the patient's desires. There has been little or no pain, no distress, and no suffering for the patient, family, and caregivers. The death is reasonably consistent with clinical, cultural, and ethical standards. The process of death sustains gratitude, belief that life is still worth living, and some hope. Excessive or futile treatments are not used just to prolong life. There is total trust, support, and comfort with the physician and nurse with an opportunity to frankly discuss all beliefs and fears. Opportunity to say goodbye to the near and dear is available. When end of life is inevitable and patients or their families consent, aggressive therapies, medications, and interventions are stopped but care is never withdrawn. Death and the process of dying play a central role in all societies and cultures. Notions of a good death are specific, unique, and different. Ideas are dynamic, fluctuating within groups and during the actual process of dying. Advances in medicine and technology have resulted in longer end-of-life periods often making the process of dying more protracted. Elderly Japanese regarded “trusting my physician” as the most important component of a good death. In China, good family relationships were considered key requirements. In India, importance is given to financial arrangements at the end of life. Good death is not a single final event but a series of social events. End-of-life support and care should continually respond in flexible and dynamic ways to the wishes of the dying person. Dying needs to be understood as a process that can be influenced. Although dying is inextricably tied to life, there is a general reluctance to speak about death., The art of dying well presupposes that one is at peace with oneself. Having support is important throughout the dying process. According to a Kaiser Family Foundation poll in 2017, seven in 10 Americans preferred to die at home, an important component of “good death.” Costs also need to be factored in. Interventions to improve end-of-life care have important ramifications for dying patients and spouses. Sudden events preclude time to discuss end-of-life issues with the family members. Terminal illnesses offer time for discussion and resolution of “unfinished” psychological and practical business. Good death includes not being a burden to the family, leaving affairs in order, and having a sense of fulfillment.
| » What Is Bad Death?|| |
A “bad death” is one in which there is violence, severe pain, torture, dying alone, being kept alive against one's wishes, loss of dignity, and inability to communicate one's wishes. Proper communication makes a difference between a good and a bad death. During the past few decades, the primary location of death has shifted from home to the hospital – sometimes perceived as an ominous indicator of a “bad death.” Excessive use of technology, with wishes of the patient and family ignored, side-stepping patient's knowledge and autonomy in decision making, the patient being reduced to a physiological system versus whole person, and the quality of life devalued, all contribute to a “bad death.”A death in the ICU is sometimes labeled as a “bad death.” Some perceive ineffective cardiopulmonary resuscitation as contributing to a “bad death.”
| » Assisted Dying|| |
Choosing assisted dying is an incredibly difficult decision for all involved. Judging the quality of death is very personal. Assisted dying laws allow the patients and their families some measure of control over the time and manner of death. In Switzerland, law permitting assisted death has been in force since 1942. In 2014, Belgium extended its 2002 euthanasia law to children. The Netherlands legalized assisted suicide and euthanasia in 2002. In the United States, the state of Oregon has permitted self-administered, doctor-prescribed lethal medications since 1997 according to the Death With Dignity Act. The state of Washington passed a similar law in 2008, as did Vermont in 2013. Eight states in the United States have passed laws allowing doctor-assisted death. In February 2015, Canada's Supreme Court ruled that adults suffering extreme, unending pain would have the right to doctor-assisted death. Such legislation has existed for many years. In a landmark judgment delivered on March 9, 2018, a five-judge bench of the Supreme Court of India, recognizing “living wills” made by terminally ill patients, held that the right to die with dignity is a fundamental right. Legalizing passive euthanasia, Justice Chandrachud had remarked, “Life and death are inseparable. Every moment our bodies undergo change. life is not disconnected from death. Dying is a part of the process of living.”
| » Death Cafés|| |
Palliative care extends beyond the medical treatment of patients. In a number of countries, a movement called Death Cafés offers meetings over tea and cakes where participants can hold open conversations on death, sharing their ideas and concerns with others. At no point in history have people lived as well as today. So the quality of death is also being discussed. The Death Over Dinner movement suggests that groups of friends host dinner parties to process how they feel about death. “How we want to die,” the movement's website prompts, “represents the most important and costly conversation America isn't having.”
| » Quality of Death Index|| |
India has been ranked 67 out of 80 countries on the 2015 Quality of Death Index, lower than South Africa (34), Brazil (42), Russia (48), Indonesia (53), and Sri Lanka (65), but above China (71). People in the United Kingdom get the best end-of-life care, according to the index calculated by the Economist Intelligence Unit. Policy interventions and public engagement to improve the quality of death through the provision of high-quality palliative care have gained impetus in recent years. Recent legislative changes have made it easier for doctors in India to prescribe morphine. Recognizing that most individuals are uncomfortable talking about death, it has been stressed that Quality of Life “Die-logues” Needs to Include Quality of Death and end-of-life care discussions to increase public awareness.
| » COVID-19 Fatalities Epitomizing “Bad Deaths”|| |
It is now accepted that many primary COVID-19 (coronavirus disease 2019) fatalities are due to neurological complications. Patients with primary neurological conditions leading to death may also get infected with COVID-19. As this is becoming the new normal, any review of “good death” should discuss the pandemic-associated deaths. Death associated with COVID-19 is generally associated with “bad death.” The death positive movement discusses death whether it is good, bad, ugly, or something in between. Many believe that long-term, lasting peace of mind comes from talking about death, voicing one's concerns, and making plans for the end of life. Bereavement at the time of COVID-19 is devastating for the bereaved kin, whose grief is compounded by their own social isolation and inability to access practical and emotional support. High-stress living situations include financial problems, worries about their own and other family members' health, and confinement to home. Virtual funeral services, pairing bereaved elders with a telephone companion, remote counseling, and encouraging “continuing bonds” may help older adults adapt to loss, during the pandemic. The World Health Organization on March 24, 2020, recommended that relatives do not touch or kiss a body infected with COVID-19. Government rules on social distancing to prevent the spread of disease have altered the funeral and death rituals almost everywhere. Large gatherings for funerals are restricted worldwide., Bidding goodbye to a loved one is a ritual that transcends social and cultural differences. Strict social distancing orders are forcing people to find new ways to grieve, for example, typing comments in the chat section and posting photos online. The fear of dying alone is nearly universal. Hospital policy often precludes loved ones to be in the ICU at the time of death. This ethical and health care dilemma is compounded in a COVID-19 death. Will virtual video visits at this time be the new normal?
| » Medicolegal Issues|| |
Even if the family and the attending clinicians understand and fully encourage a “good death” to happen, regulations and the absence of clear, specific unambiguous laws could come in the way. Withdrawing life support systems is one such gray area. The author had in an earlier publication pointed out that there was even no international consensus on what exactly constitutes brain death. A person legally brain dead in India would be alive in the United States. In India, with the exception of the state of Kerala, even tests for evaluating brain stem death cannot be initiated unless consent has been obtained for organ transplantation. In the current legislative vacuum, doctors are in a precarious position in terms of whether to continue life support or not. Removal of such support could be questioned. There is also an ethical dilemma of justification in using limited essential medical resources on those with no chance of recovery and are actually dead.
Guidelines and procedures for “living wills” have been recommended. Unfortunately, these have still not been actually enforced or implemented. Government directives are yet to be issued. The top court had earlier in 2011 recognized passive euthanasia in the Aruna Shanbaug case, by which it had permitted the withdrawal of life-sustaining treatment from patients not in a position to make an informed decision, with the deliberate intention to hasten the death of a terminally ill patient. The ruling emerged from a petition filed by a nongovernmental organization “Common Cause,” who had approached the court seeking a direction for recognition of the “living will” common in other countries. The living will is a written document by way of which a patient can give explicit instructions in advance about the medical treatment to be administered should they become terminally ill and no longer able to communicate their desires.
In the United Kingdom, after a person is pronounced brain dead, the body belongs to the state, and the state can decide to continue or discontinue life support systems. In India, clarity is, at this time, lacking. Doctors need to remember that their well-meaning intentions could very rarely lead to involvement in frivolous medicolegal suits. The author has always believed in the doctrine of “res ipsa loquitur” confident that in the most unlikely event of the Good Samaritan act being questioned, the judiciary would always take the specific context into consideration, satisfying themselves that there was no mala fide intent. At the worst, it would be deemed a procedural lapse so long as the intention was primarily to help achieve a “good death” as per the family's desires. This, of course, is a personal stand. Hopefully, either through a test case or through appropriate legislation, the various gray areas will soon become explicitly clear. The government of Kerala, in a notification dated January 19, 2020, chose to provide a more expansive and liberal interpretation to the Registration of Births and Deaths Act and included brain stem death as sufficient to formally certify death. However, by leaving this recognition of brain stem death as equivalent to death to individual states, the gap between medical science and the law continues.
In the absence of a registered Advanced Medical Directive, the Supreme Court of India has laid the following guidelines: A decision has to be taken to discontinue life support either by the parents or the spouse or other close relatives, or in the absence of any of them, such a decision can be taken even by a person or a body of persons acting as a next friend. It can also be taken by the doctors attending to the patient. Such a decision requires the presence of two witnesses and countersigned by a first-class judicial magistrate of that area and should also be approved by a medical board set up by the hospital. Choosing what is right for the patient has to be tempered with the knowledge of the practice of medicine as well as medical jurisprudence.
| » Conclusion|| |
The past two decades have witnessed an unprecedented deployment of technology in clinical neurosciences. Younger clinicians are superefficient in what they have been trained to do, but somewhere along the line are we missing the wood for the trees? Is it not in their “job profile” to also be responsible to ensure a good death for patients, when this is inevitable? Are we really so superbusy that we cannot commiserate with the family, empathize, and sympathize with the individual who has placed their life in our hands?
Textbooks, journals, clinical meetings, and group discussions can give us guidelines and scientifically valid statistics of different outcomes with different management plans. How often do we factor in the specific desire of the patient? Are we totally transparent during our counseling sessions? Unconsciously or inadvertently, is our approach influenced because we are on a “fee for service” or on a salary? What proportions of society's health care resources should be directed to “curing,” in contrast to “caring”? When is enough enough for the terminally ill? Who decides? Should decisions always be based on irrefutable scientific evidence and available technology? Do increased “options” only compound the issue? Having been involved in hundreds of deaths during a full professional career, one sometimes becomes less sensitive. We forget that for the aggrieved family it is often the first experience. A consultant “breaking down” is not always a sign of weakness. There are occasions when the British stiff upper lip needs to be replaced with moist eyes. We are also human. Permission for organ retrieval was given for South Asia's first multiorgan transplant on December 25, 1995, because the author unashamedly broke down.
Working in a public hospital in the late seventies, the author has on several occasions encouraged the family to take a sick moribund patient home so that the septuagenarian would have a good death. Influencing factors included the logistics of transporting a dead body across interstate check posts and the costs. Do treatment protocols, algorithms, and flow charts give adequate weightage to what the patient and the family want? Even if “primum non nocere” is considered, it is generally about the physical body. Do no harm rarely extends to the emotional and economic domains. Palliative care normally is outside the scope of neurosurgeons and neurologists. Discussion of the end-of-life management scenarios often has to be initiated within days or even hours of admission. The situation is more complex as the moribund patients were probably in good health before a totally unexpected catastrophe struck. Discussing death should not be considered macabre, ghoulish, and in morbid taste. As clinicians, it behooves us to strive to achieve at least a “good death” for all those who have placed their trust in us.
The author is thankful to Lakshmi for secretarial assistance.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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