Death and Dying – Part 1

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This page is long; this page is technical. Therefore to make it easier for you to navigate it, I'm putting links here for you to access the various sections. Other readers might just read it through; others, welcome to use the following links:

Nothing was easy about putting this page together, not for one who enjoys joking around with this website. And not for one who loves life and hates to face his own mortality. I found most of this information on different sites and thought it would be appropriate for anyone interested. It is not something anyone can escape: for loved ones, for not so loved ones, and for one's self. And so I hope you find it both interesting and helpful.

We are alive, and therefore we will die. This is the simplest and most obvious truth of our existence, and yet, very few of us have really come to terms with it. In addition, coping with the loss of a loved one is often one of the most difficult challenges a person may face ... whether it's the death of a child, a spouse, a parent or a beloved companion pet.

A century ago, most people who suffered traumatic injuries or contracted serious infections died soon afterward. Even those who developed heart disease or cancer had little expectation of a long life after the disease was diagnosed. Death was a familiar experience, and most people expected little more than comfort care from doctors.

Today, death is often seen as an event that can be deferred indefinitely rather than as an intrinsic part of life. The leading causes of death for people over age 65 years are heart disease, cancer, stroke, chronic obstructive pulmonary disease, pneumonia, and dementia. Medical procedures commonly extend the lives of people who have these diseases, often giving people many years in which quality of life and function are quite good. Other times, procedures extend life, but the quality of life and function decline. Death often seems unexpected even though the family knew that the person who died had a serious illness.

To say that a person is dying typically means that the person's death is expected to occur in hours or days. Also, people who are very old and frail or who have a fatal disease such as AIDS are often said to be dying. Most people with chronic diseases-such as heart disease, certain cancers, emphysema, liver or kidney failure, Alzheimer's disease, and other dementias-live for years, although they become limited in physical activity.

Predicting when a person will die of a chronic disease is sometimes necessary. Health insurance often does not cover comfort care for chronic disease, except for hospice care, which usually requires a prognosis of less than 6 months-an arbitrary time that may be difficult to predict accurately.

Doctors can make a fairly accurate short-term prognosis for an average patient with certain conditions, based on statistical analysis of large groups of patients with similar conditions. For example, they may accurately estimate that 5 out of 100 patients with similar critical conditions will survive and leave the hospital. But predicting how long a particular person will survive is much more difficult. The best prediction a doctor can make is based on odds and the degree to which the doctor is confident in those odds. If the odds of survival are 10 percent, people should acknowledge the 90 percent likelihood of dying and should make plans accordingly.

When statistical information isn't available, a doctor may be unable to predict a prognosis or may make one on the basis of personal experience, which may be less accurate. Some doctors prefer to offer hope by describing remarkable recoveries without also mentioning the high likelihood that most people who have such serious conditions will die. However, gravely ill people and their families are entitled to the most complete information available and the most realistic prognosis possible.

Often the available choices are between dying sooner but remaining comfortable and living slightly longer by receiving aggressive therapy, which may prolong the dying process, increase discomfort and dependence, and decrease the quality of life. Nevertheless, patients and their families may feel that they must try such therapies if any chance of survival exists, even when hope of cure is unrealistic. Questions of philosophy, values, and religious beliefs come into play when such decisions are made by and for a dying patient.

Dying may be marked by deterioration over a long period of time, punctuated with bouts of complications and side effects, as in some people who have cancer. Usually about 1 month before death, energy, function, and comfort decrease substantially. The person is visibly failing, and the fact that death is near becomes obvious to all.

Dying follows other time courses. Sometimes, a person being treated aggressively for a serious illness in a hospital abruptly worsens and is known to be dying only a few hours or days before death. Increasingly common, however, is dying with a slow decline in capabilities over a long period of time, perhaps with episodes of severe symptoms. Neurologic diseases such as Alzheimer's disease follow this pattern, as do emphysema, liver failure, kidney failure, and other such chronic conditions. Severe heart disease disables people over time and causes severe symptoms intermittently, but it usually kills suddenly with a disturbance in the heart's rhythm (arrhythmia).

Knowing the likely time course of a disease enables a person who has the disease and the family to make plans. When death from an arrhythmia is likely, they should be prepared for death at any time. For people who have cancer, the decline that precedes death usually gives some warning that the final days have arrived.

Honest and open communication between patient and doctor about the patient's preferences for care at the end of life is essential for the best possible quality of life during a fatal illness. Here the doctor provides a candid assessment of the likelihood of recovery and disability during and after various treatment options, and the patient tells the doctor and his family what he wants and doesn't want to experience. The patient should state his preferences for treatment, the limits he wants placed on that treatment, and his wishes concerning where he wants to die and what he wants done when death is expected.

When choosing a doctor, a person should ask about care at the end of life:

Does the doctor have substantial experience caring for dying patients? Does the doctor care for the patient until death in all settings ... hospital, nursing home, or home? Does the doctor treat symptoms fully (palliative care) at the end of life? Is the doctor familiar with the home health, physical therapy, and occupational therapy services in the community? Does the doctor know who qualifies for them, how they are paid for? Does the doctor know how to help patients and families get more intensive services when needed?

A good system of care includes a financing system, such as insurance policies and managed care, and a care delivery system, such as a hospital, a nursing home, and home health care agencies. Asking questions of doctors, nurses, other patients and families, social workers, and case managers can help a person find a good system of care.

• What treatments are available in the system?
• What information is available about the merits of possible treatments?
• How can a patient talk to other patients and families who have been treated there?
• What experimental treatments are available?
• How have other patients done with these treatments?
• How are these treatments paid for?

Having asked these questions, patients and families should ask themselves the following:

Do they feel they are getting honest answers to their questions?
Will they be medically, emotionally, and financially supported in this system?
Will this system accommodate their specific preferences and plans?

A patient should name a trusted person as a proxy or surrogate in a legal document called a durable power of attorney for health care. The proxy is given authority to make health care decisions for the patient in case the patient becomes unable to do so. If the patient doesn't name a proxy, then the next of kin will usually make such decisions. But in some jurisdictions and for some decisions, the next of kin must go to court to obtain this authority. Having a durable power of attorney avoids court costs and delays and is especially important when the next of kin is not the best proxy or the relationship with the proxy is not legally recognized.

A patient can give directions about the type of care he wants before he needs it. These advance medical directives are important if the patient becomes incapable of making decisions. At first these directives may be general statements of goals and philosophy, but they should become more specific as the illness progresses. Advance directives may be documented as living wills, but a letter written by the patient or documentation of the patient's directives in the medical chart may be all that's needed.

In making decisions about advance directives, patients must fully understand their circumstances and choices. Talking with a doctor is essential to making a specific, usable advance directive. In addition, the directives must be given to caregivers in all settings. Patient's thoughtful decisions made at a nursing home are irrelevant if caregivers at a hospital know nothing about them. A person who wants to die at home and does not wish to be resuscitated should ask the doctor to issue an order for emergency personnel not to transfer him to a hospital or attempt resuscitation. Family members should be instructed not to call 911 to request such interventions.

Patients and families may feel swept along by the illness and treatments, as if they have nothing to say about what's happening. Sometimes, this sense of having no control is preferable to taking responsibility for thinking about what else might be done. Patients and families vary in the amount of information and involvement in decision making that they want and should be able to have the amount they want. Then, all can be satisfied that everything was done to enable the patient to live as well and with as much dignity as possible while dying.

The patient, family, professional caregivers, and interested friends, must all be realistic about the likelihood of death, they should discuss the likely complications, and make plans to manage them. However, gaining perspective can be difficult when unexpected events happen and emotional responses confuse the decisions.

Some decisions, such as whether to allow resuscitation (that's the only treatment provided automatically in the hospital) are less significant than they seem. An order against resuscitation attempts makes sense for most patients expected to die, and such a decision need not weigh heavily on the family. Also the patient is not likely to benefit from a resuscitation attempt. Resuscitation can be prohibited in advance directives. Food and water given through tubes (artificial nutrition and hydration) are not often useful to a dying patient and they also can be prohibited in advance directives.

Other decisions may affect the patient and family more substantially and deserve more attention. For instance, the family might want to have the patient at home, a familiar, supportive setting, and not in a hospital. Family members should insist that doctors and other caregivers help make specific plans for these preferences and honor them. Hospitalization may be explicitly declined.

A patient nearing death is sometimes persuaded to try one last treatment, which often sacrifices the patient's last few days to side effects without gaining quality time. The patient and family should be skeptical of such treatments. As a patient nears death, the focus of care should shift entirely to providing comfort measures ensuring that he doesn't suffer.

Many dying patients and their families consider suicide, even more so as the public debate grows. Those talking about suicide are largely motivated by loneliness, a sense of worthlessness, or uncontrolled symptoms. Discussing suicide with a doctor may help; the doctor can increase efforts to control pain, assure the patient and family that they are cherished, and help them find meaning. Nevertheless, some patients and their families opt for suicide either as relief of an intolerable situation or as an exercise of autonomy in determining precisely when and how they wish to die.

Patients can ordinarily refuse treatments that might prolong life, including feeding tubes and respirators. Making such decisions isn't considered suicide.

People commonly experience denial when told that they will likely die of their illness. They might also feel confused, distraught, angry, or sad, and they may withdraw. And as these reactions abate, they begin to prepare for death, which often means finishing a life's work, setting things right with family and friends, then making peace with the inevitable.

Spiritual and religious issues are important to some patients and their families. Members of the clergy are part of the care team in some hospice and hospital facilities, and professional caregivers can help patients and their families find appropriate spiritual assistance if they don't have a relationship with a rabbi, priest, minister, or other spiritual leader.

Preparing for death is hard work, with many emotional ups and downs. However, for most people, it's a time of new understanding and growth. By dealing with past hurts and mending relationships, a dying person and the family can achieve a profound sense of peace.

One of the occupational hazards of care giving of the very ill is social isolation -- or, in plain words, giving up your friends. You are so busy rushing to your loved one's home to clean up, cook meals, chauffeur him or her to appointments, and respond to emergencies that you have no time left to spend with friends.

Or you've abandoned your social life because all your free time is spent at the nursing home or at the home bedside. Your patient has grown to expect your visits, and that your constant presence will improve the quality of care. Or, after daily care giving duties and family responsibilities are taken care of, you're too exhausted to see friends.

Caregivers need friends for the same reasons that the patient need friends. Friends enhance your coping abilities with their listening, understanding, and advice. Time spent with a friend produces a few laughs (or a good cry) and precious distraction from your care giving burdens. Consider a night out to be a much-needed mini-vacation. As difficult as it might be, a paid sitter may seem like an unnecessary extravagance, but it's vital to your continued well-being.

Many fatal illnesses produce similar symptoms, including pain, shortness of breath, gastrointestinal problems, skin breakdown, and fatigue. That's not all; depression, anxiety, confusion, delirium, unconsciousness, and disability may also occur. Again, to make getting around this particular section a bit easier ... links

PAIN

Most people fear pain as they confront dying. However, today pain can usually be controlled while allowing the person to remain awake, involved in the world, and comfortable.

Radiation can control certain types of cancer pain. Physical therapy or analgesics, such as acetaminophen and aspirin, are used to control mild pain. For some people, hypnosis or biofeedback, approaches that have no notable adverse effects, can effectively relieve pain. However, narcotics such as codeine and morphine are often needed. Narcotics given by mouth can relieve pain effectively for many hours, and stronger narcotics can be given by injection. Drug addiction should not be a concern, and adequate medication should be given early, rather than held off until the pain is intolerable. There is no usual dose; some patients need small doses, whereas others need much larger doses.

SHORTNESS OF BREATH

Struggling to breathe is one of the worst ways to live or die; it is also avoidable. Various methods can usually ease breathing, for example, relieving fluid buildup, changing the patient's position, providing supplemental oxygen, or shrinking a tumor that obstructs the airways with radiation or corticosteroids. Narcotics may help patients who have mild, persistent shortness of breath breathe more easily, even if they don't have pain. Taking narcotics at bedtime can promote comfortable sleep by preventing a patient from waking up frequently, fighting to breathe.

When these treatments aren't effective, most doctors who work in hospices agree that a patient suffering in this way should be given a narcotic in a dose that's high enough to relieve shortness of breath, even if the patient becomes unconscious. A patient who wants to avoid shortness of breath at the end of life should make sure that the doctor will treat this symptom fully, and even if such treatment leads to unconsciousness or hastens death somewhat.

GASTROINTESTINAL PROBLEMS

These problems, including a dry mouth, nausea, constipation, intestinal obstruction, and loss of appetite, are common in people who are very sick. In addition, some of these problems are caused by the disease. Others, such as constipation, are side effects of drugs.

A dry mouth can be relieved with wet mouth swabs or hard candy. Various commercially available products can soothe chapped lips. To prevent dental problems, a person should brush the teeth or use mouth sponges to clean the teeth, mouth, and tongue. A mouthwash that contains little or no alcohol should be used, because alcohol and petroleum-based products can be very drying.

Nausea and vomiting, caused by drugs, an intestinal obstruction, or advanced disease, may require a doctor to change the drugs or prescribe an antiemetic (antinausea) drug. And nausea caused by an intestinal obstruction may also be treated with antiemetics, and other comfort measures can be taken.

Constipation is very uncomfortable. A limited intake of food, a lack of physical activity, and certain drugs cause the intestine to be sluggish. Abdominal cramping may occur. A regimen of stool softeners, laxatives, and enemas may be needed to relieve constipation, especially when caused by narcotics. Relief of constipation is usually beneficial, even at late stages of a disease.

Intestinal obstruction may require surgery. However, depending on the patient's overall condition, his likely life span, and the reason for the obstruction, the use of drugs to paralyze the intestine, sometimes with nasogastric suction to keep the stomach clear, may be preferable. Narcotics are useful for pain relief.

Loss of appetite eventually occurs in most patients who are dying. A decrease in appetite is natural, doesn't cause additional physical problems, and probably plays a role in dying comfortably, although it may distress the patient and family. Such patients won't keep their strength up by forcing themselves to eat, but they may enjoy eating small amounts of favorite home-cooked dishes.

If death is not expected to occur within hours or days, nutrition or hydration, given intravenously or using a tube inserted through the nose into the stomach, may be tried for a limited time to see if better nutrition improves the patient's comfort, mental clarity, or energy. The patient and family should have an explicit agreement with the doctor about what they are trying to accomplish with these measures and when the measures should be stopped if they aren't helping.

Reduced food or liquid intake does not cause suffering. Quite the contrary, as the heart and kidneys fail, a normal intake of liquids often causes shortness of breath as the fluid accumulates in the lungs. A reduced food and liquid intake may lessen the need for suctioning because of less fluid in the throat and may reduce pain because of less pressure on tumors. It may even help the body release larger amounts of the body's natural pain-relieving chemicals (endorphins). Therefore, patients should not be forced to eat or drink, especially if doing so requires restraints, intravenous tubes, or hospitalization.

SKIN BREAKDOWN

Dying patients are susceptible to skin breakdown, which causes discomfort. Those who move very little, are confined to bed, or sit much of the time are at greatest risk. Ordinary pressure on the skin from sitting or moving across sheets may tear or damage the skin. Therefore every effort should be made to protect the skin, and reddened or broken skin should be reported to the doctor promptly.

FATIGUE

Most fatal illnesses produce fatigue. A person who is dying can try to save energy for activities that really matter. You find that making a trip to the doctor's office or continuing an exercise that's no longer helping is not essential, especially if doing so saps the energy needed for more satisfying activities.

DEPRESSION AND ANXIETY

Feeling sad when contemplating the end of life is a very natural response, but this sadness is not depression. A person who is depressed may lack interest in what's going on, see only the bleak side of life, or feel no emotions. A dying person and his family should talk to the doctor about such feelings so that the depression can be diagnosed and treated. Treatment, which usually combines drugs and counseling, is often effective, even in the last weeks of life, improving the quality of the time left.

Anxiety is more than normal worry: Anxiety is feeling so worried and fearful that it interferes with daily activities. Feeling uninformed or overwhelmed can cause anxiety, which may be relieved by asking caregivers for more information or help. A person who typically feels anxiety during periods of stress may be more likely to feel anxiety when dying. Some strategies that have helped the person in the past, including reassurance, drugs, and channeling worry into productive endeavors, will probably help him when dying. A dying person troubled by anxiety should get help from counselors and may need anti-anxiety drugs.

CONFUSION, DELIRIUM, AND UNCONSCIOUSNESS

Patients who are very sick become confused easily. A drug, a minor infection, or even a change may precipitate confusion in living arrangements. Reassurance and reorientation may relieve the confusion, but the doctor should be notified so that treatable causes can be sought. A patient who is very confused may need to be mildly sedated or constantly attended by a caregiver.

A dying person who is delirious or mentally disabled will not understand dying. And near death, a delirious person sometimes has surprising periods of lucidness. These episodes may be very meaningful to family members but can be misunderstood as improvement. A family should be prepared for such episodes but should not expect them.

Almost half of the people who are dying are unconscious most of the time during their last few days. If family members believe that a dying person, unconscious, is still able to hear, they can say their good-byes as if the person can hear. Drifting off while unconscious is a peaceful way to die, especially if the person and family are at peace and all plans have been made.

DISABILITY

Progressive disability often accompanies fatal illnesses. People may become unable to tend to a house or an apartment, prepare food, handle financial matters, walk, or care for themselves. Most people who are dying need help in their last weeks. Such disability should be anticipated, perhaps by choosing housing that's accessible to wheelchairs and close to family caregivers. And services such as occupational or physical therapy and home health nursing may help a person remain at home, even if the disability progresses. Some people choose to remain at home even though they know that it's unsafe, preferring an earlier death to institutionalization.

The prospect of dying raises questions about the nature and meaning of life and the reasons for suffering and dying. Though no easy answers to these fundamental questions exist, in their pursuit of answers, seriously ill patients and families can use their own resources, religion, counselors, friends, and research. They can talk, participate in religious or family rituals, or engage in meaningful activities. As death nears, the most important antidote to despair is often feeling cherished by another person. The torrents of medical diagnoses and treatments should not be allowed to obliterate the larger questions and the importance of human relationships.

Predicting the exact time of death is usually hard. Families are advised not to press for exact predictions or to rely on those that are offered. Very fragile patients sometimes live a few days, well past what seemed possible, while other patients die quickly. If a patient wants a particular person there at the time of death, arrangements should be made to accommodate that person for an indefinite time.

Often, there are certain signs that death is near. Consciousness may decrease, limbs may become cool and perhaps bluish or mottled, and breathing may become irregular.

Secretions in the throat or the relaxing of the throat muscles can lead to noisy breathing, sometimes called the death rattle. Repositioning the patient or using drugs to dry secretions can minimize the noise. Such treatment is aimed at the comfort of the family or caregivers; this noisy breathing is occurring at such time when the patient is unaware of it. This breathing can continue for hours.

At time of death, a few muscle contractions may occur and the chest may heave as if to breathe. The heart may beat a few minutes after breathing stops, and a brief seizure may occur. Unless the dying person has a rare infectious disease, family members should be assured that touching, caressing, and holding the body of a dying person, even for a while after the death, are acceptable. Generally, seeing the body after death is helpful to those close to the person. Doing so seems to counter the irrational fear that the person really did not die.

Death must be pronounced by an authorized person, usually a licensed doctor, and the cause and circumstances of death must be certified. We know that fulfilling these requirements varies substantially in different parts of the country. If a person plans to die at home, the family should know ahead of time what to expect and do. When a person has hospice care, the hospice nurse generally explains all of this. If police or other public officials must be called, they should be notified in advance that the person is dying at home and the death is expected. Hospices and home care programs often have routines for notifying officials that spare the family uncomfortable encounters. If no hospice or home care agency is involved, the family should contact the medical examiner or funeral home director to learn what to expect.

Death certificates are often underestimated by family members. These papers are necessary for making insurance claims, getting access to financial accounts, conveying real property titled to the deceased, and settling the estate. A family should obtain enough copies.

The family may be reluctant to ask for or approve an autopsy. Although it will not help the deceased, an autopsy may help the family and other people who have the same disease by revealing more about the disease process. After the autopsy, the funeral home or family can prepare the body for burial or cremation. Any incisions made during the autopsy are usually hidden by clothing.

The family and close friends are fellow travelers with the dying person, and they too suffer. As the person is dying, the family should be told what's happening and what's likely to happen.

It is important that a family also investigate the cost of a family member's death. Family members, often women at or past middle age, provide most of the care at the end of life for free. They should explore how professional caregivers can help them so that the burdens are tolerable. There are costs of giving up employment as well as of drugs, home care, and travel. One study showed that one third of families deplete most of their savings in caring for a dying relative. Family should talk openly about costs with the doctor, insisting on reasonable attention to costs and planning ahead to limit or prepare for them.

Even before the death, the family and loved ones begin to grieve. Building a life after bereavement depends on the nature of the relationship with the deceased, the age of the deceased, the kind of dying that was experienced, and the emotional and financial resources available. Also, the family needs to feel sure that they did what they should. Having a talk with the doctor a few weeks after the death can help answer lingering questions. The loneliness, disorientation, and unreality felt during the period near the death improve with time, but the sense of loss persists. People do not "get over" a death as much as they make sense of it and go on with life.

After the death, the family must settle the estate. Although discussing property and financial issues is hard to do when death is impending, it is a good idea. Doing so often reveals things that could be signed or arranged by the patient, easing the burden on the family.

So things didn’t go exactly the way you wanted it. Take it as history or as a fascinating story but in Exodus we have the section describing the escape from Egypt. That was no small matter as Egypt at that time was the most powerful nation in the world, and alone, the Jews could never have done it.

Rabbi Avigdor Miller points out some interpretation of the line, "Deep waters covered them, they descended into the depths like stone." He points out that the deep and fierce waters that frightened and immobilized the Hebrews, when they approached the Red Sea, eventually provided salvation for them. This is a lesson to be applied to all times. Our greatest concern can be harnessed into a strong support. Our greatest weakness can be transformed into strength.

When the Hebrews approached the roaring Red Sea they first viewed it as an obstacle. Little did they know that it would split for them and miraculously bury their enemies alive.

The verse continues "they descended into the depths like stone." In two other places the drowning Egyptians are compared to lead and straw. Rashi explains the measure for measure; that depending on the degree of evil of each Egyptian is how he is drowned. The most evil Egyptians drowned like straw bobbing up and down, the next level were like stone, and the least culpable went down most easily like lead. Every evil Egyptian was duly punished, and every deserving Jew was received his reward.

As individuals we face many obstacles. Let us be cognizant of the lesson of the deep waters. If G-d wills it, our worst fear, discomfort, and frustration can be our greatest support, strength, and fortitude.

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Death and Dying - Part 2
Jewish Way of Dealing with Death
Jewish Way of Mourning for the Dead
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