The End of Life: Medical Considerations

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The End of Life: Medical Considerations


The primary causes of death in the United States have changed dramatically over the past century. In the 1800s and early 1900s infectious (communicable) diseases such as influenza, tuberculosis, and diphtheria (a potentially deadly upper respiratory infection) were the leading causes of death. These have been replaced by chronic noninfectious diseases; heart disease, cancer (malignant neoplasms), and stroke (cerebrovascular diseases) were the three leading causes of death in 2005. (See Table 4.1.)

In 2005 the age-adjusted death rate for heart disease, which accounts for changes in the age distribution of the population across time, was 211.1 deaths per 100,000 people, whereas the rate for cancer was 183.8 per 100,000. (See Table 4.2.) Together, these two diseases accounted for 49.4%of all deaths in the United States in 2005. (See Table 4.1.) The American Heart Association indicates in Heart and Stroke Statistics2008 Update (2008, that the number of deaths from heart disease have been decreasing since 1970 and that the number of deaths from cancer dropped for the first time in 2003. In For First Time in Decades, Annual Cancer Deaths Fall (USA Today, February 9, 2006), Liz Szabo reports that the death rate (number of deaths per one thousand people) from cancer has been decreasing by about 1% since 1991.

Not surprisingly, the leading causes of death vary by age. For those from birth to thirty-four, accidents and their adverse effects were the leading cause of death from 1999 to 2005, as well as the leading cause of death for those aged thirty-five to forty-four in 2002 through 2005. (See Table 4.2.) For those aged thirty-five to forty-four, cancer was the leading cause of death in 1999, 2000, and 2001, with accidents and their adverse effects second, and heart disease third. Cancer and heart disease caused the most deaths among those forty-five years and older from 1999 to 2005.

Trends in Death Rates Due to HIV/AIDS

The human immunodeficiency virus (HIV) is transmitted when the body fluids (blood, semen, or vaginal secretions) of an HIV-infected person come into contact with the body fluids of an uninfected person through activities such as having anal or vaginal intercourse, sharing HIV-contaminated hypodermic needles, giving birth when the mother is HIV infected, and receiving transfusions of contaminated blood. HIV attacks the body's immune system, and when the immune system becomes sufficiently weakened, the HIV-infected person enters the symptomatic phase of HIV disease. These first symptoms include fever, night sweats, headache, and fatigue. As the immune system becomes further weakened by the virus, the HIV-infected patient develops diseases and conditions typical of the stage of disease known as acquired immunodeficiency syndrome (AIDS). The patient develops a syndrome (pattern) of conditions, infections, and diseases, which may include wastinga marked loss of weight and a decrease in physical stamina, appetite, and mental activity. He or she may also develop fungal infections of the lungs or brain coverings; Kaposi's sarcoma, a type of cancer; or a viral infection of the retina of the eye. As immune system function declines even further, the risk of death increases. There is no cure for HIV/AIDS, but there are effective treatments that significantly slow the progression of the disease.

In HIV/AIDS Surveillance Report: U.S. HIV and AIDS Cases Reported through December 1997 (1997,, the Centers for Disease Control and Prevention (CDC) states that a decline occurred in U.S. AIDS deaths for the first time in 1996. This decline removed AIDS as the leading cause of death among people aged twenty-five through forty-four in the United States, which it had been through 1994 and 1995. The decrease was largely due to the growing use of combinations of antiretroviral drugs. According to the CDC,in HIV/AIDS Surveillance Report: U.S. HIV and AIDS Cases Reported

TABLE 4.1 Death rates for the 15 leading causes of death, 2005, and percent change, 200405
[Death rates on an annual basis per 100,000 population. Age-adjusted rates per 100,000 U.S. standard population.]
Age-adjusted death rate
RankaCause of deathNumberPercent of total deaths2005 crude death rate2005Percent change 2004 to 2005Male to femaleBlack to whiteHispanicb to non-Hispanic white
Category not applicable.
a Rank based on number of deaths.
b Data for Hispanic origin should be interpreted with caution because of inconsistencies between reporting Hispanic origin on death certificates and on censuses and surveys.
SOURCE: Table C. Percentage of Total Deaths, Death Rates, Age-Adjusted Death Rates for 2005, Percentage Change in Age-Adjusted Death Rates from 2004 to 2005, and Ratio of Age-Adjusted Death Rates by Race and Sex for the 15 Leading Causes of Death for the Total Population in 2005: United States, Centers for Disease Control and Prevention, National Center for Health Statistics, 2005, (accessed January 30, 2008)
All causes2,448,017100.0825.9798.
1Diseases of heart652,09126.6220.0211.
2Malignant neoplasms559,31222.8188.7183.
3Cerebrovascular diseases143,5795.948.446.
4Chronic lower respiratory diseases130,9335.344.
5Accidents (unintentional injuries)117,8094.839.739.
6Diabetes mellitus75,1193.125.324.
7Alzheimer's disease71,5992.924.
8Influenza and pneumonia63,0012.621.320.
9Nephritis, nephrotic syndrome and nephrosis43,9011.814.814.
11Intentional self-harm (suicide)32,6371.311.
12Chronic liver disease and cirrhosis27,5301.
13Essential (primary) hypertension and hypertensive renal disease24,9021.
14Parkinson's disease19,5440.
15Assault (homicide)18,1240.
All other causes (residual)433,80017.7146.4

through December 1999 (1999,, this downward trend in annual number of deaths due to AIDS continued through 1998, when AIDS dropped to the fifth-leading cause of death among people aged twenty-five through forty-four. The CDC notes in HIV/AIDS Surveillance Report: Cases of HIV Infection and AIDS in the United States, 2003 (2003, that from 1999 through 2004 the number of deaths due to AIDS remained relatively steady, with a low of 17,741 deaths in 2001 and a high of 18,491 in 1999. In spite of this drop and leveling off of AIDS deaths, Melonie P. Heron and Betty L. Smith of the CDC explain in Deaths: Leading Causes for 2003 (National Vital Statistics Reports, vol. 55, no. 10, March 15, 2007) that this deadly syndrome was still among the top-ten leading causes of death in 2003 for people aged twenty to fifty-four, ranging from the fifth-leading cause of death in people aged thirty-five to forty-four years to the eighth-leading cause of death in people aged forty-five to fifty-four. In 2005 the number of deaths from HIV/AIDS reached an all-time low of 17,011. (See Table 4.3.)

From 2001 through 2005 most males with AIDS contracted HIV via male-to-male sexual contact or intravenous drug use. (See Table 4.3.) Most females contracted the virus by heterosexual contact with high-risk partners or intravenous drug use. Children most often contracted the virus perinatally (immediately before and after birth) from infected mothers. The South and the Northeast, respectively, experienced more AIDS deaths during these years than other parts of the United States.


During the twentieth century in the United States, the process of dying shifted from the familiar surroundings of home to the hospital. Even though hospitalization ensures that the benefits of modern medicine are readily available, many patients dread leaving the comfort of their home and losing, to some extent, control over their end-of-life decisions.

Between 1989 and 1994, in an effort to improve end of life decision making and reduce the frequency of a mechanically supported, painful, and prolonged process of dying, a group of investigators from various disciplines undertook the largest study of death and dying ever conducted in the United States. The project, known as the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT), included

TABLE 4.2 Death rates, by age, for the 15 leading causes of death, 19992005 [Rates on an annual basis per 100,000 population in specified group; age-adjusted rates per 100,000 U.S. standard population. Rates are based on populations enumerated as of April 1 for 2000 and estimated as of July 1 for all other years.]
Cause of death and yearAll agesaUnder 1 yearb14 years514 years1524 years2534 years3544 years4554 years5564 years6574 years7584 years85 years and overAge-adjusted rate
All causes
Diseases of heart
Malignant neoplasms
Cerebrovascular diseases
Chronic lower respiratory diseases
TABLE 4.2 Death rates, by age, for the 15 leading causes of death, 19992005 [Rates on an annual basis per 100,000 population in specified group; age-adjusted rates per 100,000 U.S. standard population. Rates are based on populations enumerated as of April 1 for 2000 and estimated as of July 1 for all other years.]
Cause of death and yearAll agesaUnder 1 yearb14 years514 years1524 years2534 years3544 years4554 years5564 years6574 years7584 years85 years and overAge-adjusted rate
Accidents (unintentional injuries)
Diabetes mellitus
Alzheimer's disease
Influenza and pneumonia
Nephritis, nephrotic syndrome and nephrosis
TABLE 4.2 Death rates, by age, for the 15 leading causes of death, 19992005 [Rates on an annual basis per 100,000 population in specified group; age-adjusted rates per 100,000 U.S. standard population. Rates are based on populations enumerated as of April 1 for 2000 and estimated as of July 1 for all other years.]
Cause of death and yearAll agesaUnder 1 yearb14 years514 years1524 years2534 years3544 years4554 years5564 years6574 years7584 years85 years and overAge-adjusted rate
Intentional self-harm (suicide)
Chronic liver disease and cirrhosis
Essential (primary) hypertension and hypertensive renal disease
Parkinson's disease
TABLE 4.2 Death rates, by age, for the 15 leading causes of death, 19992005 [Rates on an annual basis per 100,000 population in specified group; age-adjusted rates per 100,000 U.S. standard population. Rates are based on populations enumerated as of April 1 for 2000 and estimated as of July 1 for all other years.]
Cause of death and yearAll agesaUnder 1 yearb14 years514 years1524 years2534 years3544 years4554 years5564 years6574 years7584 years85 years and overAge-adjusted rate
* Figure does not meet standards of reliability or precision.
Category not applicable.
a Figures for age not stated included in all ages but not distributed among age groups.
b Death rates for under 1 year (based on population estimates) differ from infant mortality rates (based on live births).
c Figures include September 11, 2001 related deaths for which death certificates were filed as of October 24, 2002.
SOURCE: Hsiang-Ching Kung et al., Table 9. Death Rates by Age and Age-Adjusted Death Rates for the 15 Leading Causes of Death in 2005: United States, 19992005, in Deaths: Final Data for 2005, National Vital Statistics Reports, vol. 56, no. 10, January 2008, (accessed January 30, 2008)
Assault (homicide)
TABLE 4.3 Estimated numbers of deaths of persons with AIDS, by year of death and selected characteristics, 200105
Year of death
Note: These numbers do not represent reported case counts. Rather, these numbers are point estimates, which result from adjustments of reported case counts. The reported case counts have been adjusted for reporting delays and for redistribution of cases in persons initially reported without an identified risk factor, but not for incomplete reporting.
a From the beginning of the epidemic through 2005.
b Heterosexual contact with a person known to have, or to be at high risk for, HIV infection.
c Includes hemophilia, blood transfusion, perinatal exposure, and risk factor not reported or not identified.
d Includes hemophilia, blood transfusion, and risk factor not reported or not identified.
e Includes persons of unknown race or multiple races and persons of unknown sex. Because column totals were calculated independently of the values for the subpopulations, the values in each column may not sum to the column total.
f Includes 1,162 persons of unknown race or multiple races, 280 persons of unknown state of residence, and 2 persons who were residents of other areas.
SOURCE: Table 7. Estimated Numbers of Deaths of Persons with AIDS, by Year of Death and Selected Characteristics, 20012005 and CumulativeUnited States and Dependent Areas, in HIV/AIDS Surveillance Report: Cases of HIV Infection and AIDS in the United States and Dependent Areas, 2005, vol. 17, rev. ed., U.S. Department of Health and Human Services, Centers for Disease Control and Prevention, June 2007, (accessed January 30, 2008)
Data for 50 states and the District of Columbia Age at death (years)
White, not Hispanic5,2395,1535,2635,1375,006235,879
Black, not Hispanic9,0858,9279,0779,3028,562211,559
Asian/Pacific Islander999388113973,383
American Indian/Alaska Native79847585811,657
Transmission category
Male adult or adolescent
Male-to-male sexual contact5,9955,8676,1116,0785,929260,749
Injection drug use3,7493,6623,7593,5703,159104,450
Male-to-male sexual contact and injection drug use1,3421,2731,3541,3141,36439,920
High-risk heterosexual contactb1,4851,4341,5541,7291,58424,655
Female adult or adolescent
Injection drug use1,8291,8761,9161,9591,65141,529
High-risk heterosexual contactb2,2582,2252,4002,5312,41340,233
Child (<13 years at diagnosis)
Perinatal 66 525358464,800
Region of residence
Subtotal for 50 states and the District of Columbia16,98016,64117,40417,45316,316530,756
Data for U.S. dependent areas72466259862861919,355
Total e17,72617,31818,02018,09917,011550,394 f

more than nine thousand patients who suffered from life-threatening illnesses. Patients enrolled in the study had about a 50% chance of dying within six months.

The researchers published the results of their study in A Controlled Trial to Improve Care for Seriously Ill Hospitalized Patients (Journal of the American Medical Association, vol. 274, no. 20, November 2229, 1995). The SUPPORT investigators hypothesized that increased communication between patients and physicians, better understanding of patients' wishes, and the use of computer-based projections of patient survival would result in earlier treatment decisions, reductions in time spent in undesirable states before death, and reduced resource use.

Phase I of the study was observational. The researchers reviewed patients' medical records and interviewed patients, surrogates (people who make decisions if patients become incompetent), and physicians. Discussions and decisions about life-sustaining measures were observed.

The researchers interviewed patients, families, and surrogates about the patients' thoughts on cardiopulmonary resuscitation, their perceptions of their quality of life, the frequency and severity of their pain, and their satisfaction with the care provided. The physicians who acknowledged responsibility for the patients' medical decisions were also interviewed to determine their understanding of patients' views on cardiopulmonary resuscitation and how patients' wishes influenced their medical care. The surrogates were again interviewed after the patients' deaths.

Problems with End-of-Life Care

Phase I of SUPPORT found a lack of communication between physicians and patients, showed aggressive treatment of dying patients, and revealed a disturbing picture of hospital death. Of the 4,301 patients who participated in this phase, 31% expressed a desire that CPR be withheld. However, only 47% of physicians reported knowledge of their patients' wishes. About half (49%) of patients who requested not to be resuscitated did not have a do-not-resuscitate (DNR) order in their medical chart. Of the 79% who died with a DNR order, 46% of the orders were written within only two days of death.

The patients' final days in the hospital included an average of eight days in generally undesirable statesin an intensive care unit (ICU), receiving artificial respiration, or in a coma. More than a third (38%) stayed ten days in the ICU, and almost half (46%) were mechanically ventilated within three days before death. Surrogates reported that 50% of conscious patients complained of moderate or severe pain at least half the time in their last three days.

Phase II: Intervention to Improve Care

Phase II of SUPPORT was implemented to address the shortcomings documented in Phase I. It tested an intervention delivered by experienced nurses and lasted another two years, involving patient participants with characteristics similar to those in Phase I. This time, however, the doctors were given printed reports about the patients and their wishes regarding life-sustaining treatments. SUPPORT nurses facilitated the flow of information among patients, families, and health-care personnel, and helped manage patients' pain. To determine if the intervention worked in addressing problems in the care of seriously ill hospitalized patients at medical centers, researchers measured outcomes on five quantitative outcomes: incidence and timing of DNR orders; patient-physician agreement on CPR preferences; days in an ICU in a comatose condition or receiving mechanical ventilation; pain; and hospital resource use.

RESULTS OF PHASE II. Patricia A. Murphy et al. indicate in Under the Radar: Contributions of the SUPPORT Nurses (Nursing Outlook, vol. 49, no. 5, SeptemberOctober 2001) that the SUPPORT intervention failed to produce changes in the outcomes that were measured. In Improving Care Near the End of Life: Why Is It So Hard? (Journal of the American Medical Association, vol. 274, no. 20, November 2229, 1995), Bernard Lo indicates that he believes the results reported in the SUPPORT study raise more questions than answers. Among other issues, Lo claims that while Phase I showed poor doctor-patient communication, Phase II, instead of directly addressing this shortcoming, added a third party, the SUPPORT nurses, to do the physicians' job.

Murphy et al. note that their analysis of SUPPORT nurses' narratives suggests, however, that the nurses made a difference during the intervention in ways that were not acknowledged by the measurement of the five quantitative outcomes. The nurses supported patients and their families, brought them information, and helped them interpret it. They note that many of the nurses' narratives suggest that effective communication is a precondition of patient or family readiness to hear a grave prognosis, engage in serious decision making, or let go of a loved one.

Betty A. Ditillo suggests in The Emergence of Palliative Care: A New Specialized Field of Medicine Requiring an Interdisciplinary Approach (Critical Care Nursing Clinics of North America, vol. 14, no. 2, June 2002) that the movement in the United States to improve end-of-life care (the palliative care movement) is a result of the SUPPORT study. Ditillo notes that the delivery of effective palliative care requires an interdisciplinary team approach in order to meet the complex needs of patients and families. These complex needs include help in understanding various life-sustaining treatments and support to decide whether to accept or refuse such treatments at the end of life.


Life-sustaining treatments, also called life support, can take over many functions of an ailing body. Under normal conditions, when a patient suffers from a treatable illness, life support is a temporary measure used only until the body can function on its own. The ongoing debate about prolonging life-sustaining treatments concerns the incurably ill and permanently unconscious.

Cardiopulmonary Resuscitation

Traditional cardiopulmonary resuscitation (CPR) consists of two basic life-support skills administered in the event of cardiac or respiratory arrest: artificial circulation and artificial respiration. Cardiac arrest may be caused by a heart attack, which is an interruption of blood flow to the heart muscle. A coronary artery clogged with an accumulation of fatty deposits is a common cause of interrupted blood flow to the heart. By contrast, respiratory arrest may be the result of an accident (such as drowning) or the final stages of a pulmonary disease (such as emphysema).

In CPR, artificial circulation is accomplished by compressing the chest rhythmically to cause blood to flow sufficiently to give a person a chance for survival. Artificial respiration (rescue breathing) is accomplished by breathing into the victim's nose and mouth. According to the article Changing the Rules on CPR for Cardiac Arrest (Harvard Women's Health Watch, vol. 14, no. 10, June 2007), recent research indicates that in the case of cardiac arrest, providing chest compressions only is more effective than providing chest compressions and rescue breathing. Medical researchers have determined that taking the time to give rescue breaths to heart attack victims reduces the effectiveness of chest compressions, and effective chest compressions are vital in helping the heart retain its ability to beat on its own after being shocked with a defibrillator. However, if the person experiences respiratory arrest, rescue breathing must be performed to keep the person alive until an ambulance arrives.

The article Changing the Rules on CPR for Cardiac Arrest indicates that people who have cardiac arrest away from a hospital have a survival rate of only 1% to 3%. However, among people given CPR for cardiac or respiratory arrest, the survival rate is much higher. Tina I. Horsted et al. find in Long-Term Prognosis after Out-of-Hospital Cardiac Arrest (Resuscitation, vol. 72 no. 2, 2007) that 12.3% of people who were given CPR because of an out-of-hospital cardiac arrest or a noncardiac cause for respiratory arrest, such as drowning, were alive six months after the CPR and hospitalization.

REFUSAL OF CPR WITH A DNR ORDER. CPR is intended for healthy individuals who unexpectedly suffer a heart attack or other trauma, such as drowning. Generally, following CPR, survivors eventually resume a normal life. The outcome is quite different, however, for patients in the final stages of a terminal illness. In Ethics on Call: A Medical Ethicist Shows How to Take Charge of Life-and-Death Choices (1992), Nancy Neveloff Dubler and David Nimmons observe that for people with a terminal disease, dying after being successfully resuscitated virtually ensures a slower, harder, more painful death. In addition, patients who are dying, especially those experiencing a painful death, may welcome their demise.

A person not wishing to be resuscitated in case of cardiac or respiratory arrest may ask a physician to write a DNR order on his or her chart. This written order instructs health-care personnel not to initiate CPR, which can be very important because CPR is usually performed in an emergency. Even if a patient's living will includes refusal of CPR, emergency personnel rushing to a patient have no time to check the living will. A DNR order on a patient's chart is more accessible. A living will, also called an advance directive, is a written document stating how an individual wants medical decisions to be made if he or she loses the ability to make those decisions for him- or herself.

NONHOSPITAL DNR ORDERS. Outside the hospital setting, such as at home, people who do not want CPR performed in case of an emergency can request a nonhospital DNR order from their physician. Also called a prehospital DNR order, it instructs emergency medical personnel to withhold CPR. The DNR order may be on a bracelet or necklace or on a wallet card. However, laypeople performing CPR on an individual with a nonhospital DNR order cannot be prosecuted by the law. Caring Connections (, a program of the National Hospice and Palliative Care Organization (NHPCO), provides information about each of the fifty states' advance directives, including information about laws authorizing nonhospital DNR orders.

Mechanical Ventilation

When a patient's lungs are not functioning properly, a ventilator, or respirator, breathes for the patient. Oxygen is supplied to the lungs via a tube inserted through the mouth or nose into the windpipe. Mechanical ventilation is generally used to temporarily maintain normal breathing in those who have been in serious accidents or who suffer from a serious illness, such as pneumonia. In some cases, if the patient needs ventilation indefinitely, the physician might perform a tracheotomy to open a hole in the neck for placement of the breathing tube in the windpipe.

Ventilators are also used on terminally ill patients. In these cases the machine keeps the patient breathing but does nothing to cure the disease. Those preparing a living will are advised to give clear instructions about their desires regarding continued use of an artificial respirator that could prolong the process of dying.

Artificial Nutrition and Hydration

Artificial nutrition and hydration (ANH) is another technology that has further complicated the dying process.

In the twenty-first century, nutrients and fluids supplied intravenously or through a stomach or intestinal tube can indefinitely sustain the nutritional and hydration needs of comatose and terminally ill patients. ANH has a strong emotional impact because it relates to basic sustenance. In addition, the symbolism of feeding can be so powerful that families who know that their loved one would not want to be kept alive may still feel that not feeding is wrong. The NHPCO notes in Artificial Nutrition (Food) and Hydration (Fluids) at the End of Life (2006, that appetite loss is common in dying patients and is not a significant contributor to their suffering. It also explains that the withdrawal of ANH from a dying patient does not lead to a long and painful death. Moreover, evidence exists that avoiding ANH contributes to a more comfortable death.

ANH has traditionally been used in end-of-life care when patients experience a loss of appetite and difficulty swallowing. Health-care practitioners use ANH to prolong life, prevent aspiration pneumonia (inflammation of the lungs due to inhaling food particles or fluid), maintain independence and physical function, and decrease suffering and discomfort. However, ANH does not always accomplish these goals, as the Hospice and Palliative Nurses Association (HPNA) notes in the position statement Artificial Nutrition and Hydration in End-of-Life Care (June 2003, According to the HPNA, studies show that tube feeding does not appear to prolong life in most patients with life-limiting, progressive diseases; moreover, complications from tube placement may increase mortality. Furthermore, artificially-delivered nutrition does not protect against aspiration and in some patient populations may actually increase the risk of aspiration and its complications.

In Position of the American Dietetic Association: Ethical and Legal Issues in Nutrition, Hydration, and Feeding (Journal of the American Dietetic Association, vol. 102, no.5, May 2002), the American Dietetic Association (ADA) takes the formal position that the development of clinical and ethical criteria for the nutrition and hydration of persons through the life span should be established by members of the health care team. Registered dietitians should work collaboratively to make nutrition, hydration, and feeding recommendations in individual cases. The ADA suggests that the patient should determine the extent of his or her nutrition and hydration and that shared decision making should occur between health-care professionals and the family when the patient cannot make such decisions.

Kidney Dialysis

Kidney dialysis is a medical procedure by which a machine takes over the function of the kidneys in removing waste products from the blood. Dialysis can be used when an illness or injury temporarily impairs kidney function. It may also be used by patients with irreversibly damaged kidneys awaiting organ transplantation.

Kidney failure may also occur as an end-stage of a terminal illness. Even though dialysis may cleanse the body of waste products, it cannot cure the disease. People who wish to let their illness take its course may refuse dialysis. They will eventually lapse into a coma and die.


A coma is a deep state of unconsciousness caused by damage to the brain, often from illness or trauma. Most people in a coma recover within a few days, but some do not. Figure 4.1 shows the possible outcomes for those who do not recover from a coma quickly. For some, their brain dies. That is, they irreversibly lose all cerebral and brain stem function. Table 2.1 in Chapter 2 lists the clinical criteria for brain death.

More typically, patients who do not recover quickly from a coma progress to a vegetative state. Those in a vegetative state for one month are then referred to as being in a persistent vegetative state (PVS), and after a longer period are referred to as being in a permanent vegetative state. (See Figure 4.1.) The word permanent implies no chance of recovery.

Table 2.2 in Chapter 2 lists the criteria for the diagnosis of a PVS. PVS patients are unaware of themselves or their environment. They do not respond to stimuli, understand language, or have control of bowel and bladder functions. They are intermittently awake but are not

consciousa condition often referred to as eyes open unconsciousness.

Some PVS patients may recover further to regain partial consciousness. This condition is called a minimally conscious state (MCS). Partial MCS means that perception is severely altered, but that the patient shows an awareness of self or the environment and exhibits behaviors such as following simple commands and smiling or crying at appropriate times. Some patients emerge from an MCS and some remain in an MCS permanently.

Another disorder of consciousness that rarely occurs after a coma is locked-in syndrome. The patient with locked-in syndrome has full consciousness, but all the voluntary muscles of the body are paralyzed except (usually) for those that control vertical eye movement and blinking. People with locked-in syndrome communicate primarily with eye or eyelid movements.

Treatment of PVS Patients

In The Vegetative and Minimally Conscious States: Consensus-Based Criteria for Establishing Diagnosis and Prognosis (Neurorehabilitation, vol. 19, no. 4, 2004), Joseph T. Giacino discusses implications for treatment of PVS and MCS patients. He notes that early interventions should focus on maintaining the patient's physical health and preventing complications. Standard interventions include stretching exercises, skin care, nutritional supplementation, and pain management. In MCS patients, functional communication systems and interaction should be established. If the patient does not improve and the criteria for permanence of the condition are met, decisions must be made concerning changes in the level of care and whether life-sustaining treatment should be withdrawn. At this time professionals having expertise in the evaluation and management of patients with disorders of consciousness should be consulted to determine an appropriate course of action.

Takamitsu Yamamoto and Yoichi Katayama report in Deep Brain Stimulation Therapy for the Vegetative State (Neuropsychological Rehabilitation, vol. 15, nos.34, JulySeptember 2005) that deep brain stimulation (DBS) therapy may help PVS and MCS patients. DBS therapy involves implanting electrodes within the brain and stimulating the brain at regular intervals. The exact treatment course depends on the patient and his or her reaction to DBS. Yamamoto and Katayama report that eight of twenty-one PVS patients emerged from that state and were able to communicate but remained bedridden. After long-term rehabilitation, one of the eight patients was able to move to a wheelchair. Four of five MCS patients who were treated with DBS were eventually able to resume their life at home, whereas one patient remained bedridden. The researchers suggest that along with physical therapy and specialized rehabilitation programs to help restore nervous system function (neurorehabilitation programs), DBS may be a useful treatment for PVS and MCS patients.

Chances of Recovery

Giacino summarizes the consensus opinion of the major professional organizations in neurorehabilitation and neurology concerning, among other things, the prognosis of (prospects for) patients in a vegetative state (VS). He notes that the probability of recovery of consciousness from a VS depends on the length of time a patient has been in this condition and whether it was brought on by traumatic or nontraumatic causes.

After three months in a VS, the probability of recovering from a trauma-induced VS is approximately 35% and from a nontrauma-induced VS is 10%. Of the 35% who will recover from a trauma-induced VS, about 20% will still have severe disabilities at one year postinjury, whereas the remaining 15% will have moderate to good outcomes.

Of those with trauma-induced VS who do not begin recovery by three months, 35% will die and the other 30% will remain in a VS at one year postinjury. Of those who are alive at six months, approximately 30% will die, 50% will remain in a VS, and 15% will recover consciousness by twelve months.

Of those with nontrauma-induced VS who do not begin recovery by three months, approximately half will die during the next nine months and the other half will remain in a VS. No cases of recovery after six months in a nontrauma-induced VS have been documented.


Most organ and tissue donations are from people who have died as a result of brain injury and subsequent brain death. Once death is pronounced, the body is kept on mechanical support (if possible) to maintain the organs until it is determined whether the person will be a donor.

There are some organ and tissue donations that can come from living people. For example, it is possible to lead a healthy life with only one of the two kidneys that humans are born with, so people with two healthy kidneys will sometimes donate one to someone in need. Portions of the liver, lungs, and pancreas have also been transplanted out of a living donor, but this is less common. In most cases, living donors make their donations to help a family member or close friend.

Organ transplantation has come a long way since the first kidney was transplanted from one identical twin to another in 1954. The introduction in 1983 of cyclosporine, an immunosuppressant drug that helps prevent the body's immune system from rejecting a donated organ,

made it possible to successfully transplant a variety of organs and tissues.

Figure 4.2 and Figure 4.3 show the organs and tissues transplantable with twenty-first-century immunosuppressant drugs and technologies. The organs that may be transplanted from people who have died are the heart, intestines, kidneys, liver, lungs, and pancreas. Tissues that may be transplanted from people who have died include bone, cartilage, cornea, heart valves, pancreas islet cells, skin, tendons, and veins. Living people may donate a kidney, parts of a lung or liver, or bone marrow.

Typically, donated organs must be transplanted within six to forty-eight hours of harvest, whereas some tissue may be stored for future use.

Soon after organ transplantation began, the demand for donor organs exceeded the supply. In 1984 Congress passed the National Organ Transplant Act to create a centralized network to match scarce donated organs with critically ill patients. (For the process of matching organ donors and recipients, see Figure 4.4.) In the twenty-first century organ transplant is an accepted medical treatment for end-stage illnesses.

The United Network for Organ Sharing (UNOS), a private company under contract with the Division of Transplantation of the U.S. Department of Health and Human Services, manages the national transplant waiting list. It maintains data on all clinical organ transplants and distributes organ donor cards. (See Figure 4.5.) It assists in placing donated organs for transplantation by running the donor-recipient computer matching process. It also helps with the transportation of donated organs for transplantation. As of May 1, 2008, UNOS ( reported that 99,147 people were waiting for a transplant in the United States. Between January and April 2008, 2,197 transplants had been performed in the United States.

Table 4.4 shows the waiting list for organs between 1996 and 2005. Total registrations refers to all the registrations from all transplant centers for all organs. Therefore, this figure is larger than total patients, which is the number of patients waiting for a transplant. An individual may show up as more than one registration in the registrations category because that individual may be registered at more than one transplant center or for more than one organ. However, individuals waiting for transplants are counted only once in the total patients category, but they may show up more than once in the listing of organ types under that heading if they need more than one organ.

The total number of patients waiting for an organ transplant nearly doubled in just nine years, from 47,397 in 1996 to 89,884 in 2005. (See Table 4.4.) The total number of registrations nearly doubled as well, from 49,283 in 1996 to 94,086 in 2005. Nonetheless, the organ transplants during that same time period grew by only 40.7%, from 19,566 in 1996 to 27,527 in 2005. (See Table 4.5.)

The kidney is the organ most frequently transplanted. In 2005 there were 16,072 (58.4%) kidney transplants out of a total of 27,527 organ transplants. (See Table 4.5.) There were also 6,000 (21.7%) liver, 2,063 (7.5%) heart, and 1,405 (5.1%) lung transplants.

The number of all donors rose 57.3% between 1996 and 2005, from 9,208 to 14,488. The number of deceased donors increased 40.1%, from 5,418 to 7,593, whereas

living donors showed an increase of slightly more than twice that81.9%from 3,790 to 6,895. (See Table 4.6.) Most living donors provide kidneys. The donation of kidneys by living donors increased by 78.5% from 1996 to 2005from 3,679 to 6,566. Living donors may also contribute a portion of their liver; the donation by living donors of liver tissue increased fivefold from 62 in 1996 to 321 in 2005. Living donors of pancreas, intestine, and lung tissue are few, with living donors of lung tissue dropping precipitously to only two donors in 2005 from the mid-twenties between 2002 and 2004, and from even higher numbers of donors before that. Edward R. Garrity et al. suggest in Heart and Lung Transplantation in the United States, 19962005 (American Journal of Transplantation vol. 7, suppl. 1, May 2007) that the reason for this decrease in the demand for living donor lung transplantation is a system change in May 2005 for allocating lungs from deceased donors. This change resulted in a decrease in the number of people on lung transplant waiting lists and an increase in the ability to get patients transplanted sooner.

Organ Donation

The Uniform Anatomical Gift Act of 1968 gives a person the opportunity to sign a donor card indicating a desire to donate organs or tissue after death. People who wish to be donors should complete a donor card, which should be carried at all times. Alternatively, the wish to be a donor can be indicated on a driver's license or in a living will. Prospective donors should inform their family and physician of their decision. At the time of death, hospitals always ask for the family's consent, even if a donor has already indicated his or her wish to donate organs. Should the family refuse, the doctors will not take the organs, despite the deceased's wish. In 2005 most organ donors whose cause of death was known died of a stroke (43.7%) or head trauma (38%), as might happen in a motor vehicle accident. (See Table 4.7.) Anoxia (lack of oxygen, as in drowning or choking) was the cause of death of 15% of organ donors.

TABLE 4.4 United Network for Organ Sharing (UNOS) and Scientific Registry of Transplant Recipients (SRTR) national patient waiting list for organ transplant, end of year, 19962005
SOURCE: Table 1.3. Waiting List at End of Year, 1996 to 2005, in 2006 Annual Report of the U.S. Organ Procurement and Transplantation Network and the Scientific Registry of Transplant Recipients: Transplant Data 19962005, U.S. Department of Health and Human Services, Health Resources and Services Administration, Healthcare Systems Bureau, Division of Transplantation, 2006, (accessed January 30, 2008)
Total registrations49,28355,50862,32868,15174,80080,20981,91385,48990,09094,086
Organ type
Pancreas transplant alone213229282251313394412456507529
Pancreas after kidney149152181279459679787928983987
Total patients47,39753,38159,86265,26071,62876,89378,49881,97985,61089,884
Organ type
Pancreas transplant alone210225276249312386409453502521
Pancreas after kidney145148177276455668774917971977
TABLE 4.5 United Network for Organ Sharing (UNOS) and Scientific Registry of Transplant Recipients (SRTR) transplants, by organ and donor type, 19962005
Organ/donor type1996199719981999200020012002200320042005

Notes: () = None in category.

An organ that is divided into segments (liver, lung, pancreas, intestine) is counted once per transplant.

Kidney-pancreas and heart-lung transplants are counted as one transplant. Other multiple organ transplants are counted only in the multiple organ row.

SOURCE: Table 1.7. Transplants by Organ and Donor Type, 1996 to 2005, in 2006 Annual Report of the U.S. Organ Procurement and Transplantation Network and the Scientific Registry of Transplant Recipients: Transplant Data 19962005, U.S. Department of Health and Human Services, Health Resources and Services Administration, Healthcare Systems Bureau, Division of Transplantation, 2006, (accessed January 30, 2008)
All organsTotal19,56620,09121,31821,82623,01123,94524,55225,08626,54127,527
Pancreas transplant aloneTotal446473125118130142116130129
Pancreas after kidney transplantTotal113130156220304304374344419343
TABLE 4.6 United Network for Organ Sharing (UNOS) and Scientific Registry of Transplant Recipients (SRTR) organ donors, by organ and donor type, 19962005
Organ/donor type1996199719981999200020012002200320042005

Notes: () = None in category.

Includes only organs recovered for transplant.

The number of transplants using living donors may be different from the number of living donors. This is because there is a small number of multi-organ living donors and multiple donors for one transplant. For example, a living donor might donate a kidney and pancreas segment; or two living donors might each donate a lung lobe for one transplant procedure.

A donor of an organ divided into segments (liver, lung, pancreas, intestine) is counted only once for that organ.

A donor of multiple organs is counted once for each organ recovered.

Donors after cardiac death are included in the deceased donor counts as well and are counted separately on the last line.

SOURCE: Table 1.1. U.S. Organ Donors by Organ and Donor Type, 1996 to 2005, in 2006 Annual Report of the U.S. Organ Procurement and Transplantation Network and the Scientific Registry of Transplant Recipients: Transplant Data 19962005, U.S. Department of Health and Human Services, Health Resources and Services Administration, Healthcare Systems Bureau, Division of Transplantation, 2006, (accessed January 30, 2008)
All organsTotal9,2089,53810,36110,86111,91812,68712,81913,28414,15314,488
Donation after cardiac arrestTotal71787587118169189269391561
TABLE 4.7 Causes of death of donors of any organ, 19962005
(%) = Percentages are calculated based on totals including missing and unknown cases.
() = None in category.
Includes donors of organs recovered for transplant and not used, as well as those transplanted. Not all recovered organs are actually transplanted.
SOURCE: Adapted from Table 2.1. Deceased Donor Characteristics, 1996 to 2005 Deceased Donors of Any Organ, in 2006 Annual Report of the U.S. Organ Procurement and Transplantation Network and the Scientific Registry of Transplant Recipients: Transplant Data 19962005, U.S. Department of Health and Human Services, Health Resources and Services Administration, Healthcare Systems Bureau, Division of Transplantation, 2006, (accessed January 30, 2008)
Cause of death
Head trauma2,4562,4892,4972,4302,5202,5452,6102,6172,7932,889
Central nervous system (CNS) tumor50635761625256496057
Cause of Death (%)
Head trauma45.3%45.4%43.1%41.7%42.1%41.9%42.2%40.5%39.1%38.0%
Central nervous system (CNS) tumor0.9%1.1%1.0%1.0%1.0%0.9%0.9%0.8%0.8%0.8%

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The End of Life: Medical Considerations

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