Google Case Living Fully with Chronic Conditions

OBJECTIVES

This chapter should enable you to

ï Describe the meaning of healing as it applies to chronic conditions

ï List potential reactions to being diagnosed with a chronic condition

ï List actions that can empower people to live fully with chronic conditions

Suppose you plan to meet friends for dinner and an unbearable headache sends you to bed instead. A case of the flu cancels plans for a long weekend getaway. An important meeting is missed because you’re unable to leave your home due to pulled back muscles. The effects from the medications taken to control cold symptoms cause you to feel like doing nothing but crashing in bed. These types of situations can detour plans and make us feel miserable. Fortunately, they usually are short-term and we recover, returning to life as usual. However, there are conditions that cause discomfort and disruption to life that are not temporary chronic conditions (Exhibit 16-1). Once they develop, these conditions remain for life. Their impact can range from the inconvenience of having to take daily medication or having to use a cane to a major impairment in function, such as being blind or unable to walk.

EXHIBIT 16-1 MAJOR CHRONIC CONDITIONS

ï Arthritis

ï Autoimmune diseases, such as ulcerative colitis, lupus erythematosus, Crohnís disease

ï Blindness

ï Cancer

ï Cardiovascular diseases such as coronary artery disease, congestive heart failure

ï Cholesterol disorders

ï Chronic fatigue syndrome

ï Chronic hepatitis

ï Chronic pain syndromes

ï Chronic renal failure

ï Deafness and hearing impairment

ï Diabetes mellitus

ï Epilepsy

ï Hypertension

ï Multiple sclerosis

ï Osteoporosis

ï Parkinson’s disease

ï Respiratory diseases including asthma and chronic obstructive pulmonary disease (COPD)

ï Schizophrenia

ï Sickle-cell anemia and other hemoglobin disorders

ï Stroke

Google Case Living Fully with Chronic Conditions

Approximately half of all Americans have at least one chronic disease and more than one-fourth have two or more. The likelihood of developing a chronic condition increases with age resulting in 80% of persons over age 65 being affected; with the rise in the aging population, the number is growing. Women are more likely than men to have more than one chronic condition. Hypertension is the leading chronic condition among adults. Arthritis is the leading cause of disability among chronic conditions. According to the Centers for Disease Control and Prevention (2016), seven of the ten leading causes of death are chronic diseases with half of the deaths attributed to two chronic diseases: heart disease and cancer.

Google Case Living Fully with Chronic Conditions Prevention

The risk of developing a chronic condition can be reduced by healthy behaviors such as:

ï engaging in regular physical activity

ï not smoking

ï eating a nutritious diet

ï avoiding excess alcohol consumption

ï controlling high blood pressure

People of all ages need to be advised of the relationship between their lifestyle practices and their risk of developing chronic conditions. Considerable disability, dysfunction, expense, and diminished quality and length of life can be spared by adhering to healthy behaviors throughout the life span.

Google Case Living Fully with Chronic Conditions and A Healing Approach

Once developed, chronic conditions will be companions for life, therefore, it is important that people affected by them understand the conditions and their related care so that they can achieve the highest possible quality of life.

Much of the U.S. health-care system is based on the medical model in which the emphasis is on diagnosing, treating, and curing a health problem. Success often is based on the patient having the problem treated and eliminated and on returning to normal. Although appropriate diagnosis and treatment are important components of the care of someone with a chronic condition, the focus will differ from that of acute care as cure is not a realistic goal. Instead, the emphasis is on healing.

Google Case Living Fully with Chronic Conditions Key Point

Growing numbers of people are living with one or more chronic conditions.

Many people consider healing as being the same as a cure, and in some situations it is. However, in the realm of chronic conditions, healing implies living in harmony with the condition, achieved by:

ï Mobilizing the body, mind, and spirit to control symptoms.

ï Maintaining or improving self-care efforts.

ï Managing the disease effectively (i.e., taking medications and doing treatments as recommended).

ï Preventing complications.

ï Delaying decline in status and function.

ï Using the disease to learn about other aspects of self and life.

ï Achieving the highest possible quality of life.

Although there may be imperfections in the body’s structure or function, healing implies that a good quality of life can be achieved. Rather than being the victim of a disease and defining oneself by it (e.g., I’m a diabetic, I or I can’t do that because I’ve got a heart condition), the person who adopts a healing approach incorporates the condition into life without being defined by it. For example, a person with diabetes establishes the desired lifestyle and then adjusts diet and medication administration to accommodate that lifestyle rather than significantly changing his or her lifestyle to follow a strict plan. Likewise, the person with a newly diagnosed heart condition who enjoys eating at fine restaurants will learn how to make wise selections from any menu rather than forfeit dining out.

Google Case Living Fully with Chronic Conditions Tip for Practitioners

A holistic approach to caring for a chronic condition requires an assessment of all factors physical, emotional, mental, social, spiritual that contribute to and are affected by the condition. For example, an increase in arthritis pain may be related to failure to perform exercises as recommended by the physical therapist or consuming foods that increase inflammation. Rather than a stronger analgesic, the client may benefit more from exploring reasons for noncompliance with the exercise plan (e.g., lack of knowledge, low motivation) and the consumption of foods that should be avoided (inability to shop for or prepare recommended diet, dependence on family member who ignores dietary recommendations), and planning strategies to correct them. A holistic approach to caring for a chronic condition requires an assessment of all factors physical, emotional, mental, social, spiritual that contribute to and are affected by the condition. For example, an increase in arthritis pain may be related to failure to perform exercises as recommended by the physical therapist or consuming foods that increase inflammation. Rather than a ?stronger analgesic, the client may benefit more from exploring reasons for noncompliance with the exercise plan (e.g., lack of knowledge, low motivation) and the consumption of foods that should be avoided (inability to shop for or prepare recommended diet, dependence on family member who ignores dietary recommendations), and planning strategies to correct them.

Most people affected by chronic conditions have the ability to choose if they will adopt a healing approach or become a victim to their condition. A healing approach is fostered by becoming an informed consumer. This entails obtaining thorough explanations from health-care providers, asking questions for clarity, and independent learning as much about the condition as possible. A wealth of information can be found through Internet searches of the condition. Local support groups also can be great sources of information. Honest discussions with family and friends are useful in erasing any misconceptions they may have, obtaining support, and establishing ground rules as to minimize the impact of the condition on relationships.

Google Case Living Fully with Chronic Conditions Reflection

What factors do you think influence how you would react to being diagnosed with a chronic disease?

Reactions to a Chronic Condition

Learning that one has the diagnosis of hypertension, diabetes, osteoporosis, or another condition can be difficult. A chronic condition can affect every aspect of life (Figure 16-1). In addition to physical symptoms, psychological state, finances, and socialization can be impacted. Roles and responsibilities may need to be changed or forfeited to accommodate the effects and demands of the disease. One is vulnerability and mortality may be seriously considered for the first time. Meeting the demands of taking care of a family, supporting oneself, and maintaining relationships can become challenging. The knowledge of the negative impact a similar diagnosis has had on someone else can trigger anxiety. Even in the absence of symptoms that limit function, an individual may find that others view him or her differently based on stereotypes or misinformation. Understandably, defense mechanisms may kick in when the situation is too much to cope with, which can include:

Figure 16-1 Chronic Conditions Potentially Affect Every Aspect of a Personís Life

ï Denial. Actions that are inconsistent with the realities of the condition may be taken. For example, the person with diabetes may claim that he doesnít need to use insulin as he doesnít believe his body really needs it; a mountain climbing vacation may be planned by someone with dthe egenerative joint disease.

ï Anger. The person may resent that there are demands or restrictions imposed by the disease and displace feelings on family and friends.

ï Guilt. A person may perceive that the disease resulted from years of not following good health practices or as punishment. For example, a man who has become visually impaired may associate this with viewing pornography.

ï Depression. When the potential impact of a chronic disease is considered, a person can become overwhelmed and depressed. Plans may have to be altered. The realization that one is not in complete control will be faced.

In addition to the individuals with chronic conditions, the significant others in their lives may experience reactions as well. Shocked at his spouseís new diagnosis and at a loss of what to do to help, a husband may tell his wife, ìDonít worry, these doctors donít always know what theyíre talking about.î An adult child who has to care for a parent impaired with a heart condition may be angry that the parent didnít listen to advice to stop smoking and now not only the parent, but also the caregiver child, must suffer the consequences. A man who has a child with a disability may feel that this is his punishment for having been unfaithful to his wife. Dashed hopes for the vision they had of a dynamic life may lead to depression in family members who now have to make adjustments to accommodate the needs of a member with a chronic disease.

Google Case Living Fully with Chronic Conditions

In time and with support people should work through their reactions and reach a place in which they view the condition realistically, engage in appropriate care measures, and make necessary adjustments to their lifestyle. It is important that necessary, but not unnecessary adjustments be made. For example, a person with diabetes may need to incorporate blood testing and insulin administration into his lifestyle as necessary adjustments; however, it is unnecessary for him to decline social invitations because he can only eat certain foods or give up his interest in sailing because he may get hypoglycemic while on the water. Accepting oneís chronic condition doesnít mean being defined by it.

Google Case Living Fully with Chronic Conditions Goals

As mentioned earlier, chronic conditions differ from acute ones; therefore, goals of care will be different and include effectively managing the condition; stimulating the bodyís healing abilities; preventing complications; maximizing quality of life; dying with peace, comfort, and dignity; and empowering one to live effectively with the condition.

KEY POINT

It is important for people with chronic conditions to avoid labeling themselves with the disease (e.g., a diabetic, a heart patient, an arthritis victim) and instead, consider themselves people who happen to have the condition (e.g., a person with diabetes/heart condition/arthritis). This mind-set can be empowering in that people are controlling their conditions rather than being controlled by them.

Effectively Managing the Condition

Learning to live with a chronic condition often requires that new knowledge and skills be gained. This includes a review of the disease, conventional as well as complementary and alternative therapies that are used, medications and their effects, procedures for performing treatments (e.g., dressings, irrigations), care of equipment and special devices, and any necessary diet or lifestyle modifications.

Stimulating the Bodyís Healing Abilities

The body has tremendous abilities to fight disease, control symptoms, and prevent complications. Learning to stimulate these activities can assist in avoiding complications and reducing the need for medications and other treatments that carry risks. In some circumstances, complementary and alternative approaches (e.g., biofeedback, acupuncture, herbal medicine) can substitute for conventional treatments, as when relaxation exercises are used instead of a tranquilizer.

Preventing Complications

Chronic diseases and many of the conventional treatments used to manage them can increase the risk for infections, injuries, and other complications. For example, a person with emphysema can easily develop pneumonia from the secretions that pool in the lungs; medications used to treat hypertension can cause the person to have dizziness leading to falls; and poor vision can cause a person to misread instructions on a medication label and administer the drug incorrectly. Risks that a person may have based on his or her unique status and function need to be considered, and actions must be taken to minimize them.

Google Case Living Fully with Chronic Conditions Maximizing Quality of Life

Adhering to the ideal diet, taking medications exactly at the prescribed time, and avoiding experiences that could pose risk may keep the disease under control but at the expense of a decent quality of life. Although lifestyle modifications may be required to keep a chronic condition under control, it is important that the person control the condition rather than being controlled by the condition. Quality of life is an extremely important consideration.

Dying with Peace, Comfort, and Dignity

Despite the best care, decline and death will accompany some conditions, such as late-stage renal failure and cancer. For some persons, the time between diagnosis and death will be brief; for others there could be years of steady decline. Pain control, preservation of energy, comfort, and assistance in meeting basic needs become crucial. Emotional and spiritual support becomes important, also. Describing oneís wishes during the last stage of life in an advance directive helps to assure preferences and wishes are understood.

REFLECTION

How much sacrifice of normality and quality of life in the present would you be willing to make to add several years to your life?

Empowering One to Live Effectively with a Chronic Condition

Being proactive can assist individuals with chronic conditions to live in harmony with their conditions and enjoy high-quality lives. There are several actions that can empower people to achieve this positive state, such as selecting the right provider, becoming informed, getting support, and developing a positive mind-set.

Select the right provider.

Chronic conditions require regular, and sometimes frequent, contact with a health-care provider; therefore, it is crucial that the right provider(s) be chosen. In addition to having expertise in the area, the provider should:

ï Allocate adequate time for office visits and telephone consultation.

ï Communicate in a style and language that are appropriate for the patient.

ï Thoroughly explain and educate the patient about the condition and its management.

ï Welcome and encourage the patientís active participation in his or her care.

ï Be sensitive to the needs of the entire family unit.

ï Be open to using complementary and alternative therapies.

ï Demonstrate hope and optimism.

Become informed

Although a good health-care provider will explain and educate, each person needs to take responsibility for equipping himself or herself with knowledge. Investing time reading about the condition, prescribed treatments, treatment options, medications used, and resources is essential. If a person is unable to conduct this research independently, a family member or friend should be recruited to assist. Maintaining a file that contains information obtained, summaries of office visits with the health-care provider, drug fact sheets, resources, and other information can prove to be highly beneficial.

Google Case Living Fully with Chronic Conditions Get support

Living with a chronic condition is hardly a smooth journey. There are bumps in the road and detours from anticipated plans. Understandably, this can be a challenging experience that depletes physical, emotional, social, and economic resources. Eliciting support can help a person to carry the burdens faced. Support can be recruited from family, friends, faith communities, and support groups. Each person should identify the specific needs for which support and assistance are needed, such as accompaniment to doctorsí visits, doing Internet searches for treatment options, or visiting weekly to check in and offer encouragement.

Develop a positive mind-set

Rather than drowning in the demands imposed by a chronic condition and becoming overwhelmed and discouraged, each person can break down the demands into pieces and recognize his or her ability to address the pieces. By reflecting on his or her life in totality and identifying the challenges that have been successfully met, confidence can be strengthened. In addition, taking stock of capabilities, support systems, and other things to be thankful for can promote a positive mind-set.

REFLECTION

What do you have to be thankful for?

Google Case Living Fully with Chronic Conditions Summary

Growing numbers of people are being diagnosed with chronic conditions. Living with a chronic condition adds new challenges and responsibilities to oneís life that affects body, mind, and spirit. Fortunately, we live in a time when people can survive and live high-quality lives with these conditions. Being equipped with knowledge, good support, and a positive mindset enables a person to live effectively with a chronic condition.

Google Case Living Fully with Chronic Conditions Reference

Centers for Disease Control and Prevention. (2016). Chronic disease overview. Retrieved January 1, 2016, from http://www.cdc.gov/chronicdisease/overview/index.htm

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