Chapter-7 

A GOOD DEATH 

Francis Bacon in 17th century used the term euthanasia (Greek Eu-good, thantos death) or good death referring to an easy, painless, happy death. There is no single definition of what constitutes a good death. The definition of a good death will vary for each person.

What is a “good death”?

Poets, philosophers, religious scholars and plain folks all have spoken and written about what makes a “good death”. Some people would say there is no such thing as a “good death” – all deaths, are unnecessarily unwanted and unwelcome. That may well be true when you are young, health, physically and mentally intact or, if not all the above, at least still able to enjoy the good things and people in your life.

But what if you are very old and sick and no longer able to care for yourself? What if you have a incurable and painful illness? What if you have become demented and no longer able to recognize your family and friends? At such points, death might be a welcome exit to some. Each person is unique and so is his or her death. As Dr. Nuland points out in his book “How We Die” : “deaths are nearly as unique as the lives that come before them –shaped by attitudes, physical conditions, medical treatment and mixed of people involved.”

Still, many have pointed to a few common factors that can help a death seem good – and even inspiring – as opposed to frightening, tortuous, and sad. By most standards, a good death is one in which a person dies on his own terms, relatively free from pain, in a supported and dignified setting, surrounded by family and friends.

In 1997, The Institute of Medicine (IOM) of America defined a good death as: “free from avoidable distress and suffering for patients, families, and care givers; in general accord with patient’s family’s wishes; and reasonably consistent with clinical, cultural and ethical standards.” According Institute of Medicine, factors important for a good death include:

• Control of symptoms
• Preparing for death
• Opportunity for closure or “sense of completion” of life
• Good relationship with caregivers.

A central concept to a “good death” is one that allows a person to die on his / her own terms relatively pain free with dignity. An appropriate death is often considered to be one that occurs naturally and in old age, one that follows the natural order of things e.g. older members die before younger ones. Perhaps the best definition of an appropriate death is a death that someone might choose for himself or herself if he/she had the choice. Annals of Internal Medicine’s study (May 16, 2000) identified six components of a good death:

• Pain and symptom management

Patients are afraid of pain and do not want a painful death. A patient with AIDS described how he relieved his anxiety about painful death: “I don’t want to be in pain, and I’ve discussed it with my doctor. He said, “Oh, don’t worry about pain. We’ll put you on a morphine drip.” That sort of eased my mind.”

There are plenty of medicines to ease pain. Doctors are being trainees to treat pain aggressively. With the help of his/her caregivers, a terminal patient can expect a reasonably pain-free death. However, too much pain medicines will make the dying person drowsy or even unconscious, so that is a choice the patient and his family have to make in advance.

• Clear decision making

Patients want to have a say in his/her treatment decisions. The patient wants to have a say on whether he wants to continue painful chemo or radiation or other medical or surgical treatments for few more months of living. He wants to have inputs on all his medical care and caregivers should honor his wishes.

• Preparation for death

Too often, physicians and family members avoid talking about the end of life with people who are dying because they are afraid it will destroy their hope. Yet most patients who are dying want to know the truth and not the sugar coated truth.

• Completion

When patients recognize that the end is near, the time has come for many of them to tie all loose end. Resolving conflicts, spending time with family and friends, and saying good-bye become important. Spirituality also becomes important to some at the end of their life.

• Contribution to others

This can take the form of material or spiritual gifts or transmission of wisdom. For some, it means to give their organs to others whose lives depend on a transplant. Some donate their bodies to science. Many people want to share their wisdom with others-especially with the younger generation. Many of them try to mend their relationship with others prior to their death.

• Affirmation of the whole person

No patient, and especially someone who is dying, wants to be treated as “ a disease” or “the patient in room 101”. The dying person wants to be treated like a unique and whole person and being understood in the context of his life, value and preferences.

The Annal’s research team reported that descriptions of bad deaths “frequently included scenarios in which treatment preferences were unclear. Patients felt disregarded, family members felt perplexed and concerned about suffering. Decisions that had not previously been discussed usually had to be made during a crisis, when emotional reserves were very low.”

The researchers’ bottom line, “There is no single formula for a good death. Rather, they concluded, most of the time people choose to die the way they lived, “in character.” They may be angry, critical or mellow, dignified, at war, or at peace. (Brady).

Dr. Nuland in the Epilogue of his book “How we die” put it this way: “Life is dappled with periods of pain, and for some of us is suffused with it. In the course of ordinary living, the pain is mitigated by periods of peace and times of joy. In dying, however, there is only affliction. Its brief respites and ebbs are known always to be fleeting and soon succeed by a recurrence of the travail. The peace and sometimes the joy, that many come occurs with the release. In this sense, there is often a serenity – sometimes even a dignity-in the act of death, but rarely in the process of dying. The dignity that we seek in dying must be found in the dignity with which we have lived our lives. Ars moriendi is ars Vivendi. “The art of dying is the art of living”. One cannot express it any better!

Chapter – 6 

HOW WE DIE 

…… death hath ten thousand several doors

For men to take their exits.

                                                                          -John Webster, The Duchess of Malfi, 1612

In 2011, according to World Health Organization (WHO), 55 million people died worldwide. Non communicable diseases (-NCD, – those that cannot be passed from one person to another) are responsible for two-thirds of all global death.

The top five causes of non communicable diseases are heart disease, stroke, cancer, diabetes and chronic obstructive lung disease (COPD). Diseases caused by infections, death related to pregnancy and birth and malnutrition, collectively were responsible for a quarter of global death. 9% of all deaths were from injuries. In high-income countries, 7 in every 10 deaths are among people aged 70 or elder and 1 in 100 deaths is among children under 15 years. The picture is much different in low-income (poorer) countries. Nearly 4 in every 10 deaths are among children under 15 years and only 2 in every 10 deaths are among people aged 70 and older. Thus, in poorer countries more young people, especially children under 15 die, and in richer countries mostly old people die. Infectious diseases, malaria, tuberculosis collectively account for almost one third of all deaths in these countries. Complication of child birth due to prematurity and birth asphyxia (lack of oxygen during the birth place) and birth trauma claim the lives of many newborns and infants.

Dr. Sherwin B. Nuland in his powerful and sensitive, Pulitzer Prize winning book “How We die” writes in 1993 : “Poet, essayist, chroniclers, wagss, and wise men write often about death but have rarely seen it. Physicians and nurses, who see it often, rarely write about it. Most people see it once or twice in lifetime, in situations where they are too entangled in its emotional significance to retain dependable memories.” He goes on to say in his introduction to the book: “Every life is different from any that has gone before it, and so is every death. The uniqueness of each of us extends to the way we die. … Not death but disease is the real enemy, disease the malign force that requires confrontation.”  

Top Causes of Death World Wide 

In 2011, 55 million people died worldwide. The top ten causes of death were: heart disease, stroke, lower respiratory infection, chronic obstructive lung disease (COPD), diarrhea, HIV/AIDS tracheal and bronchial disease, diabetes, road injury and hypertensive.

Ischemic Heart Disease (IHD) or Coronary Artery Disease (CAD)

In 2011, 7million people worldwide died from heart disease. It is the number one cause of death in all countries – developed and developing. Ischemia is a term chosen by Rudolf Virchow (1821-1902), a professor of pathology at the University of Berlin. The world Ischaimos meaning holding in check of the flow of blood. Limitation of the blood flow to the heart causes Ischemia. Ischemia of the heart muscle causes a heart attack or myocardial infarction (MI). Untreated or even treated heart attack can lead to death, if one is little lucky to the scarring of the heart muscle. The normal heart which is an efficient pump, becomes a weaker pump leading to congestive heart failure (CHF). Chronic high-grade narrowing of the arteries supplying blood to the heart muscle, leading to ventricular arrhythmic (-Irregular and inefficient very rapid beating of the heart) and death.

The most common risk factors for heart disease are –smoking, family history of heart attack, high blood pressure, obesity, diabetes, high alcohol use, lack of exercise, stress and high level of blood cholesterol.

Typically, ischemic heart disease occurs when part of the smooth, elastic lining inside a coronary artery (-the arteries that supply blood to the heart muscle) develops atherosclerosis. With atherosclerosis, the artery’s lining becomes hardened, stiffened, and swollen with all sorts of “gunge” – including calcium deposits, fat deposits, and inflamed cells to form a plaque. Plaques protrude into the channel of an artery, causing partial obstruction to the blood flow. The final stoppage is caused by a dislodged blood clot which plugs the arteries and starving the heart muscle of blood and oxygen. Without oxygen, the normal rhythm of the heart contraction becomes chaotic, sending the heart into ventricular fibrillation (-very high heart rate) and then complete stoppage. When the heart stops completely, unless restarted quickly, (CPR) the person dies.

The onset of heart attack is often sudden and severe. There is a crushing pressure on the chest, radiating down the left arm or up to into the neck and jaw. The sufferer is likely break out into cold sweat, feel nauseated or even vomit. There is often shortness of breath. The sensation is frightening even to those who had experienced it before. Some 20 percent of the sufferers will die during such a heart attack if prompt medical care is not provided to restore the blood flow.

Eventually about 50 to 60 percent of people with ischemic heart disease will die within an hour of one of their heart attacks. Those who survive their heart attack or attacks will eventually die from the gradual weakening of their heart ability to pump blood (congestive heart failure) because of heart muscle’s death and scarring. The failing heart continues to fail. Heart failure begets heart failure and the owner of that heart is beginning to die.

Patients with heart failure become increasingly short of breath even with minimal exertion. They can hardly breathe. Heart failure leads to kidneys, lungs and liver failure. Half of the patients with congestive heart failure die from abnormal rhythm of the heart (-ventricular fibrillation). It is not a pleasant death (Nuland).

Stroke 

It takes a great deal of energy to keep the brain’s engine running efficiently. A stroke, sometime referred to as a cerebral vascular accident (CVA), is the rapid loss of brain function due to disturbance in the blood supply to the brain. This can be due to lack of blood flow (ischemia) caused by blockage or a bleeding (- hemorrhage). As a result, the affected area of the brain cannot function. That might result in an inability to move one or more limbs on one side of the body, inability to speak clearly or an inability to see on one side of the visual field. The onset of a stroke is abrupt. It is a medical emergency and can cause permanent brain and nerves damage and even death.

Risk factors for stroke are very similar to the risk factors for ischemic heart disease: old age, high blood-pressure, diabetes, high cholesterol, tobacco smoking and atrial fibrillation (-abnormal heart rhythm). A previous stroke makes an individual more susceptible to additional stroke. A silent stroke is a stroke that does not have any outward symptoms and the patients are typically unaware that they have suffered a stroke. Despite not causing identifiable symptoms, a silent stroke still causes damage to the brain. People with silent stroke are at much greater risk of having a major stroke. High blood pressure is the most modifiable risk factor of stroke.

Stroke is the second leading cause of death worldwide, taking 6.2 million lives in 2011. High blood pressure accounts for 35-50% of stroke risk. Blood pressure reduction of 10mmHg systolic or 5 mmHg diastolic reduces the risk of stroke by 40%. Lowering the blood pressure has been conclusively shown to prevent stroke. Diabetes increases the risk of stroke by 2 to 3 times. Well control blood sugar in diabetic patients reduces the risk of stroke.

Large stroke often results in coma. If brain damage is massive enough, all kinds of normal bodily controls go away. Pre-existing diabetes can go out of control. Lungs do not work well because of paralysis of chest muscles. Patients with stroke easily get pneumonia and die from it. Whether the terminal event is pneumonia, heart failure or uncontrolled diabetes or massive blood infection, stroke kills. And it kills large number of people worldwide-especially older people.

Patients with COPD complain of excessive chronic cough (-cough lasting years), excessive sputum and shortness of breath. The condition progresses with time. Pneumonia, pulmonary hypertension (high pressure in the blood vessels of the lungs), heart failure and breathing failure characterize the late stage of COPD. Death usually occurs during an exacerbation of illness in association with breathing failure.

Worldwide, COPD affects 330 million people or nearly 5% of the population. The number of death from COPD is projected to increase due to higher smoking rates and aging population – especially in developing countries. Most cases of COPD are potentially preventable through decreasing exposure to smoke and improving air quality. Keeping people from starting smoking is key to preventing COPD.

Diarrheal Diseases 

Diarrhea is the condition of having three or more loose or liquid stools per day. Acute diarrhea is defined by WHO, as diarrhea lasting less than 14 days. Diarrhea lasting for more than 14 days is termed “chronic diarrhea.” Diarrhea is the second most common cause of death in developing countries, and number 5 causes of death, worldwide.

Diarrhea is most commonly due to a viral infection called the rotavirus, which accounts for 40% of cases in children. Other causes of diarrhea are bacterial infections: typhoid, cholera, dysentery and E.coli. Chronic diarrhea (lasting more than 14 days) is caused by parasites, and medical conditions like-irritable bowel syndrome, colitis and celiac disease.

In many cases of acute diarrhea, replacing lost bodily fluids and salts is the only treatment needed. This is usually by mouth-oral rehydration solution (ORS) – or in severe cases by intravenously.

Worldwide 2.5 billion cases of diarrhea occurred in 2011, resulting in 1.9 million deaths. Diarrhea remains the second leading cause of death among children under five, after pneumonia. Most of these deaths can be prevented by provision of prolonged breast feeding, provision of safe drinking water, food rotavirus vaccination, homemade ORS, and timely treatment of severe dehydration in children.

HIV / AIDS 

Human immune deficiency virus (HIV)/acquired immune deficiency syndrome (AIDS) is a disease of the human immune system caused by infection with human immune deficiency virus (HIV). Human immune cells are responsible for fighting infections. When they are infected with HIV virus, their fighting ability is compromised. With immunity compromised AIDS patient suffer from various forms of infections. In 2011, HIV/AIDS was the sixth most common cause of death, killing 1.6 million people worldwide.

HIV is transmitted by three main routes: sexual contact with an infected person, exposure to infected body fluids or tissues (needles) and from mother to child during pregnancy, delivery or breast feeding (vertical transmission). There is no risk of acquiring HIV if exposed to feces, nasal secretions, saliva, sputum sweat, tear, urine or vomit.

There are three main stages of HIV infection: acute infection, clinical latency and AIDS. In the acute infection stage, many individuals develop an influenza like illness which can last 2-11 weeks, while others have no symptoms. The symptoms include fever, sore throat, enlarged and painful lymphnodes, skin rash, headache and/or sores of the mouth and genitalias. Symptoms occur in 40-90% of cases and usually last for one to two weeks.

The initial symptoms are followed by a stage of clinical latency, asymptomatic HIV, or chronic HIV. Without treatment this stage can last from 3 to 20 years (average 8 years). While typically there are few symptoms at first, near the end of this stage many people experience fever, weight loss, bowel problems and muscle pains.

In absence of specific treatment, around half the people infected with HIV develop AIDS within ten years. The most common initial conditions that alert to the presence of AIDS are pneumocystics pneumonia (40%), cachexia (-extreme weight loss) and fungal infection of the food pipe and recurrent respiratory tract infections. Other opportunistic infections may be caused by bacteria, viruses, fungi and parasites that are normally controlled by body’s immune system.

The primary cause of death from HIV/AIDS are opportunistic infections and cancer (Kaposis sarcoma), both of which are frequently the result of immune system failure. Tuberculosis co-infection is one of the leading causes of sickness and death in those with HIV/AIDS.

HIV/AIDS is considered a pandemic – a disease outbreak which is present over a large part of the world. As of 2012, approximately 35 million people have HIV worldwide. At present (2014), there is no effective vaccine for HIV/AIDS. Consistent condom use reduces the risk of HIV transmission by 80% over long term. Programs to prevent mothers to children transmission (-vertical transmission) can reduce the rate of transmission by 92 to 99%.

Diabetes 

There are two types of diabetes – type 1, seen in children and type 2 seen in adults. Type-2 diabetes accounts for 90% of all diabetes. It ranks as number 8 as the cause of death, killing 1.4 million people worldwide.

The classic symptoms of diabetes are frequent urination (polyuria), increased thirst (polydipsia), increased hunger (polyphasia), and weight loss. Other symptoms that are commonly present at diagnosis include: a history of blurred vision, itchiness, recurrent vaginal infection, poor wound healing, peripheral numbness, and fatigue. Many people, however have no symptoms during first few years and are diagnosed only during a routine testing of blood sugar.

Type-2 diabetes is caused by a combination of lifestyle and genetic factors. The life style factors those are known to be important to the development of diabetes are, lack of physical activity, obesity (BMI-greater than 30), poor diet, and excessive body fat around the abdomen. Most cases of diabetes involve many genes. As of 2011, more 36 genes have been found that contribute to the risk of type-2 diabetes. Diabetes is common in both developed and developing countries.

Globally, it is estimated that close to 300 million people suffer from diabetes. This is equivalent to about 6% of the world’s adult population. The number is definitely high than present estimation, as many people who have it, do not know that they have it.

Type-2 diabetes is a classic chronic disease associated with a ten-year shorter lifespan. This is partly due to a number of complications with which it is associated including; two to four times risk of heart attack and stroke; a 20 fold increase in lower limp amputation (because gangrene) and increased rates of hospitalizations. It is the largest cause of blindness and kidney failure. It is also associated with significant increase in the risk of dementia (cognitive impairment) sexual dysfunction and general infections.

Onset of type-2 diabetes can be delayed or prevented through proper nutrition, regular exercise and weight control. Intensive life style measures may reduce the risk by over half. The benefit of exercise occurs regardless of the person’s initial weight or subsequent weight loss. Many of the complications of diabetes can also be reduced by exercise, control of blood sugar, blood pressure, cholesterol and timely medical care.

Road Injuries 

Road injuries rank no. 9 among the top ten causes of death worldwide. In 2011, 1.3 million people died from road injuries. It is predicted by WHO that, by 2020 road traffic deaths and injuries will exceed HIV/AIDS as burden of death and disability worldwide. Over 90% of the world’s fatalities on the roads occur in low-income and middle-income countries, which have only 50% of the world’s registered vehicles.

A number of factors contribute to the risk of collision, including driver’s skill and / or impairment, vehicle design, speed of operation, road design and road environment. Studies have found that 57% of crashes were due solely to driver factors. Driver error, intoxication and other human factors contribute wholly or partly to about 93% of the crashes. A large body of knowledge has been amassed to prevent car crashes, and reduce severity of those that do occur. Some of them are drivers’ training and licensing, restrictions on driving under the influence of alcohol and drugs, compulsory use of seat belts, restriction on cell phone use while driving and compulsory use of helmet by all motorcyclists. Helmets use can reduce death by almost 40%.

Prematurity (Premature Birth)

Every year 15 million babies are born premature (preterm) around the world, accounting for one in 10 births. A baby is considered premature, if he or she is born before 37 weeks of pregnancy. In 2011, 1.2 million premature babies died, ranking it as the 10th common cause of death worldwide.

In normal human fetus, several human organ systems mature between 34 and 37 weeks of pregnancy. One of the main organs greatly affected by premature birth is the lungs. The lungs are one of the last organs to mature in the womb: because of this, many premature babies develop breathing difficulties soon after birth. Without proper medical care, they are likely to die. Premature babies are also at risk of developing bleeding into the brain, pneumonia, blood infection, rupture of the bowels and die from it.

The exact cause of premature birth is unsolved at present. In fact, the cause of 50% of premature birth is never determined. A number of factors have been identified that are linked to a higher risk of premature birth: mother age more than 35 and less than 18, poor nutrition and multiple pregnancies (twins, triples etc). Infections play a major role and may account for 25 to 40% of preterm birth.

In developing countries, maternal deaths, and under-five childhood mortality are also major problems. In 2011, approximately 300,000 mothers died from childbirth complications worldwide. Most of these deaths are preventable. All women need is access to antenatal care (care during pregnancy), skilled care during childbirth, and care and support in the weeks after childbirth.

Globally, 10 millions infants and children die each year before their fifth birthday. 99% of these deaths occur in developing countries. Most of these deaths are preventable. Seven out of ten childhood deaths are due to infectious diseases – acute respiratory infection, diarrhea, measles and malaria. Malnutrition makes these children more susceptible to death.

Cancer

Cancer is a broad group of diseases involving unregulated cell growth. In cancer, cells divide and grow uncontrollably, forming malignant tumors, and invading nearby parts. The cancer may also spread to the distance parts of the body through the lymphatic system or the blood stream (metastasis).

The causes of cancer are diverse, complex, and only partially understood. Many things are known to increase the risk of cancer, including tobacco use, exposure to radiation, environmental pollutants, dietary factors, lack of physical activity, obesity and certain infections. Approximately 5-10% of the cancer can be traced directly to inherited genes. When cancer begins it invariably produces no symptoms, only appearing later when the mass continues to grow. The findings (signs and symptoms) depend on the type and location of cancer.

Cancer is called the “great imitator”. Oncologist and author Dr. Mukharjee calls it “Emperor of melodies”. Initially it grows unsuspected and painless. Mass may be felt in the breast or in the testicles or little bit of blood may be passed in the stool (colon cancer) without any pain. General symptoms occur due to distant effects of the cancer. These may include weight loss, fever, being excessively tired and changes to the skin (jaundice or yellow discoloration of the skin). Most cancers are initially recognized when patients see a doctor because of their symptoms. Some cancers are diagnosed during routine screening like – mammography and prostate exams. People with suspected cancer are investigated with medical tests. These commonly include – blood tests, x-rays, MRI and CT scans, endoscopy and tissue biopsy. Cancer has a reputation as a deadly disease. But all cancers are not deadly. There are many treatment options for cancer including: surgery, radiation and chemotherapy. Which treatments are to be used depends upon the type location and grade of the cancer as well as the person’s health and wishes. Taken as a whole, about half of patients receiving treatment for invasive cancer die from cancer or its complications. Survival is much worse in developing countries. In developed countries, patients with terminal cancer can get palliative or comfort care.

The most significant risk factor for developing cancer is old age. According to cancer researcher Robert Weinberg, “If we lived long enough sooner or later we all would get cancer.” The most common cancers in adults are – lung cancer, liver cancer, stomach cancer, colorectal cancer, prostate cancer in men and breast cancer mostly in women. The three most common cancers in children are – leukemia (blood cancer), brain tumor, and lymphoma (lymph node cancer). Though many diseases (such as heart failure) may have worse outlook than most cases of cancer, cancer is the subject of widespread fear and taboos. Most people view diagnosis of cancer as a death sentence even though many cancers if diagnosis and treated early are curable. Cancer is regarded as a disease that must be “fought” to the end.

By the twin forces of local invasion and distant metastasis (spread), a cancer gradually interferes with the functioning of the various organs of the body. Nutritional depletion is common. Cancer patients in advance stages have poor appetite, weight loss, wasting of the muscle and general mental debilitation (cancer cachexia). Since most people with cancer are in older age group, they may also suffer from heart failure, diabetes and stroke. Because most of the chemo medicines suppress the infection fighting immune systems, most cancer patients die of pneumonia and blood infection (sepsis) at the end.