Chronic Illness Patient Advocate, Navigator or Health Advocate
The concept of patient advocacy in its current form was developed in 1950’s as the treatment of patients grew more and more technically complicated, as a means to make the voice of the patient more readily heard. In today’s world of constantly evolving medical techniques, treatments, and services, the average individual cannot be expected to be thoroughly acquainted with any and all this material. So it becomes the function of the chronic illness patient advocate to perform a variety of services to ease the burden of the patient, and their family, as they learn to deal with every aspect of the disease.
The primary concern of the chronic illness advocate is the support of the patient in all aspects of life with the disease, whether they be physical, emotional, or financial. An advocate can assist the patient in investigating available treatment options and educating the patient on the efficacy of each of them, be it pharmacological or surgical. By educating the patient, the advocate can be of great assistance in helping them make an informed decision about their course of action, and the possible side effects and outcomes. Support may also involve recommending counseling services for the patient, and their family members, to help them cope from day to day. Chronic illness patient advocates may also be of assistance in helping the patient, and their caregivers, deal with any physical debilitation resulting from the disease, and its treatment.
Another aspect of chronic illness patient advocacy is assistance in navigating the financial aspects of treating the disease. An advocate can act as a liaison between the patient and his or her insurance company, assuring that the patient receives any and all benefits to which they are entitled. When one is dealing with a serious disease, it is quite easy to lose track of other aspects of your life. An advocate can help to seek out sources of assistance which can ease the financial burden of the patient.
Education is also a major function of a health advocate. Both the patient, and their caregivers, are often in need of information about how the disease will affect their lives, both during its progression, and in its aftermath. Patients must be informed about how their condition will affect their mobility, the ability to care for themselves, and if they will be left with any permanent impairment to their lifestyle. Caregivers need to be instructed in mechanisms, or techniques they must use to cope with the patient’s daily care, such as injections, proper care of surgical dressings, etc.
The patient, above everything else, needs to know that there is someone in their corner. Someone who will help them find their way through the confusing, and sometimes daunting, world of modern medicine. Someone who will have their best interests in mind as they face challenges presented every day in their struggle to find, secure, and finance the best treatment available.
What is a Chronic Illness?
A chronic illness is a general term that refers to a state of persistent un-wellness due to a disease condition. It can be due to an infection with bacteria, viruses, parasites, protozoa, fungi or a combination of these organisms. On the other hand it can be due to disease conditions that are not caused by any living organisms. Examples are:
· Metabolic disorder like diabetes
· Auto-immune diseases like rheumatoid arthritis.
· Various blood and tissue cancers.
· Various non-cancerous tumors.
· Some mental health problems can also be chronic illnesses. Schizophrenia and some depressive illnesses fall in this group.
In order to understand what a chronic illness is, let’s find out other comparative ways of grouping illnesses in relation to their duration.
1. Acute illness. This is an illness of sudden onset and which if treated in time can completely resolve and total good health recovery is possible. Examples are a simple upper respiratory infection and indigestion.
2. Recurrent illness is an illness that gives a person episodes of relative good health before striking again. It is common to hear medical people talk of recurrent appendicitis.
Symptoms of Chronic illness
These are general symptoms of a long-standing state of ill health. There are specific symptoms that are relevant to the particular disease in question. The general ones may include:
· Loss of weight.
· Psychological and emotional disturbances due to the burden of the disease.
· Weight gain can also be a symptom in certain conditions like mental illnesses and eating disorders.
· Progressive weakness.
· Constitutional signs and symptoms like fever, nausea, vomiting, diarrhea and other non-specifics may be present.
· Pallor, cyanosis, jaundice, dizziness, body swelling, too much or too little urine output can all point to a chronic illness.
· Swellings and chronic wound and sores may also be present.
Causes and risk factors of chronic illnesses
We can group these causes into:
· Infections like tuberculosis, syphilis and sometimes typhoid fever.
· Cancer affecting any part of the body
· Lifestyle. Obesity, smoking, alcohol and drug abuse, a sedentary lifestyle, unhealthy diet can all be the genesis of a chronic illness.
· Exposure to harmful toxins and radiations.
· Genetically inheriting defective genes.
There are four stages that can help in identifying a chronic illness. These are:
1. The history of the illness as explained by the patient and those close to him.
2. The clinical presentation and physical examination findings as carried out by a qualified medical personnel.
3. Laboratory findings on the tests the physician thinks are relevant to what is suspected. This may include blood tests, stool examination, urine analysis, cerebral spinal fluid analysis and many other tests including culture and sensitivity of any organisms isolated.
4. Imaging tests may also be necessary. These can include X-rays, ultrasonography, CT and CAT scans, MRI, positron emission tomography (PET), gene analysis tests and others that may be necessary under the circumstances.
Treatment of chronic illnesses.
Normally the treatment may need a multidisciplinary approach. This means different medical specialist coming together so that the treatment is as holistic as possible. The mainstay of treatment depends on the cause of the chronic illness.
· Infections. Treatment will depend on the causative organism. It may involve use of the appropriate antibiotics, antiviral agents, anti-parasitic, antifungals, antiprotozoal drugs and others.
· Autoimmune diseases may need treatment with nonsteroidal anti-inflammatory drugs (NSAIDs), corticosteroids, biological therapies and others that may be necessary.
· Cancers may need surgery, chemotherapy, radiotherapy, biological therapy, targeted therapy and others deemed necessary by the team of attending doctors.
· Genetically determined chronic illnesses may need a combination of the above measures that may offer palliative relieve. On the other hand stem cells or bone marrow transplant has proved beneficial under certain conditions. Gene therapy is also an upcoming form of therapy for these conditions.
U.S. Statistics for chronic Illnesses
According to the Center of Disease Control (CDC) in 2012:
· 117 million Americans had one or more chronic illness. That is about half of the country’s population.
· In every four Americans, one has two or more chronic illnesses.
· 7 of the top 10 killers are chronic conditions with cancer and heart disease leading at 48%.
· Obesity is a major contributor to the pool of chronic illness.
· About 84% of the health care spending went to the care of the 50% of the population suffering from one or more chronic illness.