Lesson Four: End-Stage Terminal Illnesses

In Lesson Four we will briefly discuss some diseases, which in their end-stage, are considered terminal. This list is not all-inclusive, but is meant to give the caregiver a general understanding of some hospice-appropriate illnesses.

Acquired Immune Deficiency Syndrome (AIDS)

In 1983, the human immunodeficiency virus (HIV) was isolated as the cause of Acquired Immune Deficiency Syndrome (AIDS). The virus is spread by intimate sexual contact, contaminated blood products, and from mother to child (prenatal exposure for newborns and contaminated breast milk). HIV infects the body by attaching itself to the CD4 receptors of cells, generally T4 cells or lymphocytes (white blood cells that fight infection). The virus then enters the cells and transfers its own DNA, thus disabling the cells from performing their function. The virus is then able to replicate within the body. Antibodies to the virus can usually be detected by a simple blood test approximately 2-6 weeks after exposure.

A diagnosis of AIDS is generally not made until an HIV-infected person has at least two of the opportunistic infections that can be contracted by a person with uncontrolled HIV. The other consideration is an abnormally low CD4 T-cell count of less than 200. These opportunistic infections are categorized into infections (fungal, bacterial, protozoal, and viral), certain types of cancers, such as Kaposi’s sarcoma, non-Hodgkin’s lymphoma, and Hodgkin’s disease. A few of the more common opportunistic infections found in persons infected with uncontrolled HIV are:

n Pneumocystis carinii pneumonia (PCP): Caused by an organism in the air, food and water. Can cause a lung infection in persons infected with HIV.

n Toxoplasmosis: Caused by an organism found in vegetables and unpasteurized dairy foods. Cats and birds often serve as reservoirs for the organism. It is the most common cause of focal encephalitis (inflammation of the brain).

n Mycobacterium Avium Complex (MAI/MAC): Is a bacterial infection that usually occurs late in HIV infection. This bacteria is found in soil, air, water and raw dairy products. Causes a disease affecting the blood system, bone marrow, lymphatic system, liver, lungs, and gastrointestinal tract.

n Herpes Simplex 1 and 2: Is spread through oral secretions resulting in painful lesions on the tongue, lips, and inside the mouth. Herpes Simplex 2 is spread through intimate sexual contact. In persons with uncontrolled HIV, the herpes virus can cause complications such as bronchitis and encephalitis.

n Cytomegalovirus (CMV): Caused by one of the herpes viruses. CMV is most common in persons with a CD4 count less than 50. It can affect the lungs, central nervous system, blood gastrointestinal tract, and adrenal glands. CMV retinitis can cause blindness in patients who are immunocompromised. Persons with AIDS are generally placed on a medication called Gancyclovir to help prevent blindness and other complications from CMV.

For further information, we recommend you watch the following video on HIV & AIDS to better understand this subject. Please click on the link below and then click on "Video." This is an outside link; to return to the Vaisnavas C.A.R.E. online course hit your browser back button.

Alzheimer’s Disease

In it’s final stages, this disease is considered a hospice-appropriate illness. It is rarely seen in patients younger than 45. Onset is usually gradual and can have a duration of 3-20 years before death. Symptoms can begin with poor concentration and short-term memory loss and progresses to disorientation, personality changes, incontinence, and periods of extreme agitation. Eventually the patient becomes bed bound and at risk for decubitus ulcers (severe bedsores), respiratory infection, and contractures of the limbs (locking of the leg and arm joints). In it’s final stage, patients with Alzheimer’s Disease generally will not eat or drink on their own.

For further information, we recommend you watch the following video on Alzheimer's disease to better understand this subject. Please click on the link below and then click on "Video." This is an outside link, to return to the Vaisnavas C.A.R.E. online course hit your browser back button.

Amyotrophic Lateral Sclerosis (ALS): ALS is a neurological disease that causes muscle weakness leading to paralysis as well as dysphagia (the inability to swallow). Intellect remains intact as this cruel and debilitating illness makes a person more and more dependant on others for care. Death is usually caused by a lung infection due to the respiratory muscles being unable to expand the chest. Choking is the cause of death in only a small number of patients with ALS. A small percentage of patients live with this progressive illness up to 10 years.

Cancer

Cancer involves the uncontrolled growth of abnormal cells. These cells may or may not spread to other parts of the body. When it does, it is referred to as metastasis. Normal cells grow, divide, and eventually die. As we age, this process begins to slow as cells divide to restore worn-out ones or to repair injuries to the body. But, cancer cells continue to grow and divide. As they gather together they form tumors that invade surrounding tissue. Cancer spreads when cells from the original tumor break away and travel through the bloodstream or the lymphatic system. The cancerous cells then ivade other parts of the body, including organs.

Cerebrovascular Disease (CVA)

Cerebrovascular Disease is also known as a stroke. It usually occurs when an artery that carries blood to the brain becomes blocked by a blood clot or when a vessel in the brain breaks. As a result of either of these events the flow of blood to the brain is interrupted along with oxygen flow to that portion of the brain. Brain cells in the area of the clot or rupture begin to die. The dead cells then release a chemical that kills surrounding areas in the brain. This chain reaction occurs quickly making the first six hours after a stroke begins the most crucial time for medical intervention.

Diabetes Mellitus

Diabetes is a chronic disease tat is incurable at present. Simply stated,

Type I diabetes occurs when a person secretes little or no insulin. It usually manifests before age 30. Type II diabetes is often referred to as “adult onset diabetes” because onset usually occurs after age 40. Unlike Type I diabetes which requires insulin injections, Type II diabetes can often be controlled with diet and exercise. Some patients may also need some type of oral hypoglycemic medication.

At it’s worst; diabetes mellitus can cause two serious complications called diabetic ketoacidosis (DKA) and hyperosmolar nonketotis syndrome (HNKS). Both of these conditions are life threatening. Other complications that can occur as a result of uncontrolled diabetes are cardiovascular disease, peripheral vascular disease (that may result in amputation of lower limbs), nephropathy (a disease of the kidneys), and retinopathy (that can lead to blindness). Peripheral neuropathy, a disease causing damage to the nerves that results in pain and numbness in the limbs, is frequently seen in patients with insulin-dependant diabetes mellitus.

For further information on diabetes, we recommend you watch the following video to better understand this subject matter. Please click on the link below and then click on "Video." This is an outside link, to return to the Vaisnavas C.A.R.E. online course hit your browser back button.

Hepatitis

This is a disease that causes inflammation of the liver. There are several types of viral hepatitis, some more serious than others.

Hepatitis A: Is highly contagious by fecal to oral route. Can result from drinking contaminated milk, water, or eating food that is contaminated with the virus. A vaccine is available for long-term prevention of hepatitis A virus for those over two years of age.

Hepatitis B: Is transmitted through contaminated blood products, intimate sexual contact, contact with contaminated bodily fluids, and from mother to child. This virus can cause lifelong infection, liver cancer, cirrhosis (scarring) of the liver, liver failure, and death. The drug, interferon, is used to treat Hepatitis B over a period of four months. As a preventative, a three-step vaccine is available to prevent the virus.

Hepatitis C: Is transmitted through contaminated blood and from mother to child. It is thought that this virus can also be transmitted through intimate sexual contact. This is a progressive disease that can cause death due to liver failure or liver cancer.

Hepatitis D: Is also referred to as delta hepatitis. It is a small virus that cannot replicate on its own. Hepatitis D requires the presence of Hepatitis B virus in order to replicate. It can then become chronic and can cause a patient with a mild form of Hepatitis B to develop a more severe hepatitis along with cirrhosis of the liver.

Hepatitis E: Is transmitted through fecal to oral route where it first enters the gastrointestinal tract, reproduces, and spreads to the liver.

Hepatitis G: Is transmitted through contaminated blood products. It enters the bloodstream, travels to the liver, and begins to reproduce causing inflammation of the liver.

Parkinson’s Disease

This neurological illness is slow-progressing and usually causes deterioration over a ten-year span. Onset usually occurs in middle age or older, but can develop in patients much younger. The cause is believed to be a deficiency in a chemical called dopamine that prevents brain cells from functioning normally. The cause of death is usually related to aspiration pneumonia or another infection.

Symptoms may progress to muscle rigidity, cramping in the neck, trunk, and legs, tremors, difficulty swallowing, and eyes fixed upward. Patients often have frequent falls due to difficulty with walking.

For further information, we recommend you watch the following video on Parkinson's Disease to better understand this subject. Please click on the link below and then click on "Video." This is an outside link, to return to the Vaisnavas C.A.R.E. online course hit your browser back button.

Conclusion:

There are other diseases, such as Multiple Sclerosis, for example, that may also be experienced by patients needing hospice care. Students are encouraged to independently investigate this subject more thoroughly if a broader base of knowledge is desired.

Continue to Lesson Four Questions

Back to Caregiver Course information page

Lesson Four