Summary of End-of-Life Diseases
Posted on: November 19, 2013
Excerpts below concerning end-stage diseases are taken from The Final Journey--Complete Hospice Care for the Terminally ill Vaishnavas (Torchlight Publishing)
In Chapter 4 of The Final Journey, many diseases are discussed which, at their end-stage, are considered terminal and hospice-appropriate illnesses. The following information is not meant to be all-inclusive. It is, however, meant to prompt further inquiry by the reader, if desired. (PLEASE NOTE: SINCE THE PUBLICATION OF THIS PAGE WE ARE ATTEMPTING TO ADD MORE PAGES AND DETAILS TO OUR “END-OF-LIFE DISEASES” SECTION OF OUR WEBSITE TO PROVIDE OUR READERS WITH MORE INFORMATION.) However, if you require even more assistance, kindly send your questions to “Contact Us” and we will have one of our many medical professionals on our Vaishnavas CARE Team respond to your inquiry. Thank you.
Sangita Devi Dasi
(Susan Pattinson, RN, Hospice Educator)
Acquired Immune Deficiency Syndrome (AIDS)
Acquired Immune Deficiency Syndrome (AIDS) is a syndrome of opportunistic infectins that occur as the result of uncontrolled spread of the human immunodeficiency virus (HIV). When the virus is uncontrolled, these opportunistic diseases can invade every system of the body and eventually cause death. The Center for Disease Control and Prevention (CDC) first described the virus in 1981. HIV is spread by intimate sexual contact, contaminated needles or blood products, or from mother to child. Blood products are now routinely screened to prevent transmission of the virus through blood transfusions.
Highly active antiretroviral agents (HAART), medications introduced in 1996 to fight HIV, have greatly reduced the number of opportunistic infections contracted by HIV-infected patients. Each type of drug works on a different part of the replication cycle of the virus. When taken in combination, they have proven to suppress viral replication for long periods of time. In a 1996 issue of the New England Journal of Medicine, it states, “The goal of antiretroviral therapy should be to reduce levels of circulating virus as much as possible, for as long as possible.” For those who have access to these medications and are able to follow a strict daily regime, the HIV infection has now become more of a chronic long-term disease.
It’s important to note, however, that these medications are not a cure for HIV or AIDS, and those undergoing this medication regime may still develop infections. They also have not been shown to eliminate the risk of passing HIV to others through sexual contact or blood contamination. Those who are undiagnosed, untreated, not properly treated, or those for whom antiretroviral therapy has failed are still at risk for developing many of the opportunistic infections long associated with AIDS. The development of these opportunistic infections, as well as the number of T4 cells in the body, signals the difference between being HIV-infected and having AIDS. Those patients who do not comply with their medication regime, those who do not have access to HAART, and those in third-world countries are at additional risk for developing AIDS.
Because one’s immune system is lowered with the presence of HIV infection, there are many opportunistic illnesses that can compromise the health of a person infected with HIV. Details about these infections can be found in The Final Journey.
Some infections include:
✦ Pneumocystis carinii pneumonia (PCP)
✦ Mycobacterium Avium-Intracellular (MAI) Infection
✦ Herpes Simplex Virus
✦ Cytomegalovirus (CMV) Infection
✦ Candida Albicans Infection
✦ Progressive Multifocal Leukoencephalopathy (PML)
Dementia causes problems with thinking, memory, and reasoning. It happens when the parts of the brain used for learning, memory, decision making, and language are damaged or diseased.
Also called major neurocognitive disorder, it’s not a disease itself. Instead, it’s a group of symptoms caused by other conditions.
Alzheimer’s disease is the most common cause of dementia. Between 60% to 80% of people with dementia have Alzheimer’s. But there are as many as 50 other causes of dementia.
The symptoms of dementia may improve with treatment. But many of the diseases that cause dementia aren’t curable.
Some causes of Dementia include:
Degenerative neurological diseases. These include Alzheimer’s disease, Parkinson’s disease, Huntington’s disease, and some types of multiple sclerosis. These diseases get worse over time.Vascular disorders. These are disorders that affect the blood circulation in your brain. Traumatic brain injuries caused by car accidents, falls, concussions, etc. Infections of the central nervous system. These include meningitis, HIV, and Creutzfeldt-Jakob disease. Long-time alcohol or drug use Certain types of hydrocephalus, a buildup of fluid in the brain
In general, many people do not think of Alzheimer’s disease as a terminal illness, but in its final stages it is considered a hospice-appropriate disease. It is the most common cause of dementia (a progressive condition causing, among other things, intellectual impairment, memory loss, apathy, and speech disturbances), contributing to about 50% of all cases. Because it is progressive, prognosis is poor. Duration of the disease generally lasts from three to 20 years, with an average of approximately seven years from diagnosis to death. It is rarely seen in patients before 45 years of age.
Early signs of Alzheimer’s Disease may include the following:
1. Memory loss
This is the most common symptom. Do you easily forget information you just learned? Do you lose track of important dates, names, and events? Do you forget big things even happened? Do you ask for the same information over and over?
2. Trouble planning and problem solving
Do you have trouble making plans and sticking to them? Is it hard to concentrate on detailed tasks, especially if they involve numbers?
3. Daily tasks are a challenge
Even familiar things can become hard. Do you have trouble driving to a location you go to often? Can you complete an ordinary task at home or at work?
4. Times and places are confusing
Do you feel disoriented at times? Can you fully grasp something that’s not happening right now? Do you get lost easily? Do you forget where you are? Do you remember how you got there?
5. Changes in vision
Is it harder to read the words on the page? Do you have trouble judging distance? Can you tell colors apart? This is important because it can affect your driving.
6. Words and conversations are frustrating
Vocabulary becomes hard. Can you find the right word you’re looking for? Or do you call things by the wrong name? Do you keep repeating yourself?
7. You lose things
Everyone misplaces things from time to time, but can you retrace your steps to find them again? Do you put things in unusual places, like your watch in the refrigerator? Do you accuse people of taking things?
8. Lapse in judgment
Have you made poor decisions lately? Do you make mistakes with money, like giving it away when you normally wouldn’t? Are you showering as often? Do you take less care of yourself? Do you dress for the wrong weather?
9. Social withdrawal Do you lack motivation? Do you find yourself sleeping more than usual?
10. Mood changes
Do you get upset more easily? Do you feel depressed, scared, or anxious? Are you suspicious of people?
Alzheimer’s disease causes irreversible damage to brain cells, causing early symptoms of short-term memory loss, forgetfulness, inability to concentrate, difficulty learning new information, and often, deterioration in personal hygiene. In its later stages, Alzheimer’s disease may cause deterioration of long-term memory and communication, including spoken and written language; repetitive actions; urinary and fecal incontinence; and personality changes, including extreme agitation that can lead to violent episodes. In its final stage, patients with Alzheimer’s disease often stop eating and drinking, leading to dehydration and starvation. They are also at high risk for infections, a major cause of death. Because of decreased mobility, many patients are at risk for decubitus ulcers (sometimes referred to as bed sores or pressure sores). Usually occurring over bony areas of the body, decubitus ulcers can begin with superficial skin maceration or become deep enough to expose muscle and even bone. Meticulous skin care as well as frequent repositioning of a patient with Alzheimer’s disease (at least every two hours around the clock) is essential to help avoid such ulcers.
Medications are available that can slow its progression in some patients who are in the early stages of the disease. However, the illness still remains irreversible.
Amyotrophic Lateral Sclerosis (ALS) was first written about in the late 1800’s, but became known as Lou Gehrig’s disease in 1939 when the famous New York Yankee showed great courage after being diagnosed with the illness. ALS is a neurological disease caused by the degeneration of upper and lower motor
Normally, cells in the body grow, divide, and eventually die in a systematic order. As we reach adulthood,
“Staging” refers to the extent and prognosis of the tumor. There are many staging systems of cancer. A common system is the tumor, node, and metastasis system (TNM) that adds numbers to each of these categories, depending on the distribution of the cancer cells.
Some important warning signs of cancer to be aware of are:
✦ Unusual bleeding or discharge, either internally or externally
✦ Any lump or thickening
✦ A sore that does not heal
✦ A significant change of bowel or bladder habits
✦ A persistent cough or hoarseness
✦ Difficulty swallowing
✦ The appearance of a new wart or mole, or a change in size and shape of an existing wart or mole
✦ Unexplained weight loss
Any of these signs should immediately be brought to the attention of a physician.
Cerebrovascular Disease (CVA)
Cerebrovascular disease (CVA ) is also referred to as a stroke. A stroke most commonly occurs when a blood clot blocks an artery carrying blood to the brain, or when one of these blood vessels breaks. In either case, blood flow to a portion of the brain is interrupted; therefore oxygen to that part of the brain ceases as well.
Within minutes or a few hours after a stroke begins, the brain cells in the immediate area die. This
A patient will develop loss of certain abilities depending on which part of the brain is affected by the stroke, as well as the size of the area of dead cells. Loss of function may involve movement, speech, and memory. A small stroke may leave only weakness in an arm and leg, for example, whereas a larger stroke may leave one paralyzed and unable to speak. If a stroke occurs on the left side of the brain, the right side of the body is affected. If it occurs on the right side of the brain, symptoms occur on the left side of the body. CVA is the third most common cause of death in the United States, attacking mostly older adults. It can, however, occur at any age. Diagnostic tests include computed tomography (CT) scan of the brain, a lumbar puncture (spinal puncture), an electroencephalogram (EEG), and an angiogram.
Chronic Obstructive Pulmonary Disease (COPD) is an airway obstruction that can result
Congestive heart failure (CHF) is a disease in which the heart becomes inefficient and cannot pump enough blood to meet the demands of the body’s organs. As blood flows too slowly from the heart due to
There are many causes of congestive heart failure. Some common causes include coronary artery disease (the narrowing of arteries that supply blood to the heart), myocardial infarction (a previous heart attack that leaves scar tissue to interfere with the heart muscle), hypertension (high blood pressure), previous rheumatic fever, congenital heart disease (heart defects present at birth), and infections of the heart valves or muscle, such as endocarditis or myocarditis. Diagnostic tests to determine if someone has congestive heart failure may include a chest x-ray, an EKG, cardiac catheterization, and an echocardiogram. Prognosis of the disease depends on the cause and its response to treatment.
Diabetes mellitus is a chronic disease caused by inadequate production of insulin or the inability to utilize the insulin produced. Both men and women are equally affected. The incidence rises with age.
Occasionally, hospice patients with cancer of the pancreas may develop diabetes secondary to their cancer. In any hospice patient with diabetes, care is taken to avoid hyperglycemia (increased levels of blood sugar) or hypoglycemia (decreased levels of blood sugar). Symptoms of hypoglycemia include headaches, confusion, dizziness, sweating, irritability, or tremors. If not treated, hypoglycemia can lead to seizures and coma. Signs and symptoms of hyperglycemia may include excessive thirst, frequent urination, fatigue, weakness, abdominal pain, nausea, vomiting, fruity breath, drowsiness, flushed skin, and general discomfort. If a diabetic patient was taking insulin medications prior to his hospice admission, it is generally continued even if the patient stops eating because the liver continues to produce glucose. Once the patient becomes unresponsive (unconscious), insulin is usually stopped in hospice care.
Hepatitis is a disease causing inflammation of the liver. There are many types of hepatitis viruses, some with higher risk of complications than others. Hepatitis may be acute, meaning it has a sudden onset with severe symptoms, but runs a short course. Hepatitis may also be chronic, meaning it is of long duration and/or slow progression.
Patients with chronic hepatitis are at risk for lasting liver disease. This can be of a serious nature, because the liver has many functions, including:
✦ Storing iron, vitamins, and minerals
✦ Producing bile to help in digestion
✦ Acting as a filter to convert poisonous chemicals to substances that can either be used by the body or excreted from the body
✦ Converting food into stored energy
✦ Producing new proteins
✦ Producing clotting factors so blood can clot
HCV-related chronic liver disease may take up to 20 or more years to develop. It is now known that hepatitis B and HIV may be present in patients with HCV. Therefore, testing for each of these diseases is indicated. Screening for HCV is not routine. However, patients in high-risk categories should consider screening.
These include the following:
✦ Those with a history of I.V. drug abuse
✦ Those with chronic hemodialysis
✦ Those with a history of a blood transfusion before June 1992
✦ Living in the same house as someone with HCV
✦ Sexual partners of someone with HCV who is in a nonmonogamous relationship
✦ History of sharing intranasal devices for drugs such as cocaine
✦ Those with a history of liver disease
✦ Healthcare providers who received a needle-stick injury from a person with HCV
Screening for contact with blood or body fluids from someone known to have the hepatitis C virus starts immediately after exposure. Testing is repeated in 4-6 months if the first test is negative. The HCV RNA test can be administered as early as 4-6 weeks.
Latest Cures for Hepatitis C:
In 2015, ombitasvir, paritaprevir and ritonavir (Technivie) was approved for use in combination with ribavirin for treatment of genotype 4 hepatitis C infections. It is the first treatment option for genotype 4 infections that does not require interferon. It can achieve 100% cure rates. That same year, daclatasvir (Daklinza) was approved to treat genotype 3 infections. This is given with sofosbuvir (Sovaldi) with cure rates up to 98%.
That same year, daclatasvir (Daklinza) was approved to treat genotype 3 infections. This is given with sofosbuvir (Sovaldi) with cure rates up to 98%.
In 2016, approval was given for elbasvir and grazoprevir (Zepatier) to be used with or without ribavirin for treating genotype 1and 4. The single tablet drug joins Harvoni and Viekira Pak as being treatments for genotype 1 treatments that do not require interferon. Its cure rates in genotype are 94-97% while for genotype 4 it could reach 100% cure rates. (www.webmd.com)
The new drugs are not inexpensive. A full course of treatment can cost tens of thousands of dollars. Check with your insurance company. Also, ask your doctor if you can take advantage of drug company programs that give financial assistance.
Multiple sclerosis (MS) is a debilitating disease affecting the brain and spinal cord. It is a major cause of disability in young adults, usually striking between the ages of 20 and 40. It is more common in women than in men.
There are five main types of MS, ranging from relatively mild symptoms that do not worsen and do not cause permanent disability to progressive deterioration without periods of remission. In a small number of MS patients, the disease progresses rapidly, sometimes causing complete disability and death within a few months of onset.
MS causes inflammation in portions of the nervous system that results in the destruction of the myelin sheaths that cover the nerve fibers. Areas of sclerosis or scarring remain that inhibit nerve signals. This can lead to visual impairment, muscle weakness, numbness, decreased coordination, paralysis, tremors, urinary and bowel incontinence, mood swings, and difficulty with speech. In advanced stages, patients can exhibit forgetfulness and confusion, sometimes referred to as “MS dementia.”
As of this writing, the exact cause of MS is unknown, but a great deal of research has led to some possibilities—including a slow-acting viral infection and an auto-immune response of the nervous system, meaning the immune cells in one’s body destroy the cells that produce myelin sheaths, or the nerve fiber covering. Diagnostic tests may include an electroencephalogram (EEG), a lumbar puncture, psychological testing, and a CT scan.
(www.webmd.com) If you have multiple sclerosis (MS), there are many medical treatments you can use to treat your disease, like medications or physical therapy. But many people look for other ways to feel better, such as acupuncture, yoga, relaxation, herbal remedies, and massage. They’re called alternative and complementary therapies.
These therapies won’t cure your disease. But there’s evidence that some of them are helpful when you use them along with your regular treatment. For others, the science isn’t as clear. When you’re deciding if you want to try something new, it’s important to know what might help you and what could be harmful. Always talk with your doctor before you start any new therapy. Together you can decide what is best for you.
Complementary Therapies Recommended for Multiple Sclerosis:
(Please Note: The following Complementary Therapies are not recommended as a cure for Multiple Sclerosis. They are merely suggested as therapies to be added along with your medications and/or treatments prescribed by your healthcare practitioner as a means for decreased stress, relaxation, etc. Please discuss all complementary therapies (ie. exercise, massage, acupuncture, evening primrose oil, etc.) with your physician before starting.)
Parkinson’s disease is a slow-progressing neurological disease. On average, deterioration progresses over a period of about ten years. Men are affected more often than women. Onset usually occurs in middle age or older, but may also occur at a younger age. It is believed that the cause of this illness is a deficiency in dopamine which prevents brain cells from performing their normal function within the central nervous system. Death usually occurs from aspiration pneumonia or another type of infection.
Much research is being done to discover a cure for Parkinson’s disease, but at present none exists. Treatment involves replacement medication for decreased dopamine levels. Often this decreases the severity of symptoms. Physical therapy is also used to help maintain normal muscle tone. In some cases, patients may opt for neurosurgery, but this is usually more of an option when the patient is comparatively young and otherwise healthy. Surgery is not a cure and is performed for palliative reasons to help relieve symptoms. A great deal of spiritual and emotional support is needed for patients with this cruel and debilitating illness.
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