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Heart disease is the No. 1 cause of death in the United States. Functional failure of the heart to provide adequate circulation for life, heart failure, is the end syndrome for virtually all forms of heart disease. Congestive heart failure (CHF), the common use term for heart failure afflicts 6.5 million adults in the United States, with over 960,000 new cases diagnosed every year.1
The burden and risk factors remain alarmingly high, with cardiovascular disease accounting for 14 percent of all health expenditures, or around $316 billion annually, according to the AHA 2017 Statistics Update, making conditions of the heart and circulation the highest financial weight of any major diagnostic group.2 It is time to focus on the recognition and management of the number one killer of our time, CHF. This course discusses lifestyle changes that are therapeutic and meant to slow the process and progression of heart failure.
After completing this course, the student will be able to:
Heart failure afflicts an individual, but it affects entire families. As an individual gradually loses the breath to do even the simplest of things, drastic changes must occur. This includes an increased effort by family and friends to help with the house, shopping, errands, perhaps even bathing chores.
Heart failure is not the ‘flu’ or any other type of passing illness. It most often manifests as the gradual, persistent erosion of a person’s entire bodily functions as back pressure and flow of increasingly congested circulation makes changes throughout all tissue and organ systems. The effects of this ever more sluggish torrent of congested blood and fluid makes the simplest of daily activities difficult, and even unbearable, to contemplate at times. In order to live effectively with Heart Failure (HF), every aspect of life and lifestyle must change or be closely monitored.
One of the most important changes that any individual with newly diagnosed heart failure can do is to get to know their health care providers. If a person has been diagnosed with congestive heart failure or any other variation of heart failure, frequent visits to their health care providers will be a necessity.
As a diligent health care provider, you will see your heart failure client on more than a yearly basis. The entire family should meet the health care providers. Always, the most important person on the team is the client. Inform the client and his/her family if the lead doctor is a heart failure specialist. This is the time to plan to add the needed connection with a specialist if one is not already on the case. Heart failure is the type of ongoing trial and tribulation where it helps everyone if you get the right mix of medical professionals working for the same goal. Make sure that personalities match closely enough that everyone can work together. Have the client meet the nurses assigned to follow up with their weights, medications and treatments. Introduce the laboratory person who they’ll be seeing for routine blood draws and medication levels. Include the dietician that will be helping with the drastic dietary changes that are coming. Occupational and Physical therapist and assistants are important members of the team. Occupational and Physical therapists help clients in establishing, restoring, and maintaining self-management techniques, with a focus on health-promoting routines and habits. See if a pharmacist or social worker is available to be assigned to the case. Have the family meet with them and get to know them. It will pay off greatly as the condition progresses.
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Each client will require support. Everyone needs someone to be supportive of him or her. Build a support system into the plan of care. If you are the health care professional assisting in this capacity, do your best to immediately plug your client into a CHF (congestive heart failure) support group. Inquire of your client if their families’ are supportive. Find out what they have in the way of social support networks, and if they do not have ready support, connect them, fast. Heart failure is a progressive condition that is terminal. If you have heart failure, you will die. That does not mean that you cannot have an excellent quality of life. It does mean it will take a lot of work. That is where the support systems come into play. Encouraging and doing just what they are meant to do, supporting the individual with heart failure.
Those who make up the support network for the client need to take care of themselves so that they can help take care of the person with heart failure. The following are tips for caregivers.
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Trina, who was forty-two, developed substernal spreading pain and ignored it until she had trouble breathing, became very weak, sweaty all over, and the chest pain became unbearable. Her daughter called 911, and an ambulance came to take her to the hospital. When the paramedics put her on a cardiac monitor, she had an elevated ST segment and was in sinus tachycardia with a rate of 132. Her blood pressure was 180/100, PO2 was 87 percent. She reported she weighed 220 pounds and was five feet two inches tall. She stated “my chest feels like a big old cow is sitting on it.” Upon arrival, a cardiac catheterization was performed, and the decision was made to open up her Right Coronary Artery which was 80 percent occluded. Trina needed to make some major lifestyle changes. Her current diet was, as she put it, to “eat anything not trying to eat her first,” and she smoked after every meal as well as several times daily to relax. She did not make time to exercise and worked full time as a Nursing Assistant taking care of others. |
One of the greatest challenges in controlling heart failure is a dietary lifestyle change. The low sodium diet that is commonly prescribed with CHF is tough. The American Heart Association (AHA) dietary guidelines recommend consuming no more than 1,500 milligrams of sodium per day, with less being better. Complying with this means a lot more than just having the person lay off the salt shaker. To effectively limit sodium intake, when buying prepared and prepackaged foods, read the nutrition and ingredient labels. Salt (sodium) causes cells to retain fluid which increases the intravascular fluid volume thus leading to increasing edema. The tough thing about low salt intake is that most prepared foods and virtually all restaurant and fast foods have way too much salt in them. While an individual portion here and there may fall below the 1,500-milligram limit, the limit is for 1,500 milligrams per entire day!
Sodium in table salt:
Stop! You have already exceeded your daily salt intake! |
| The AHA had found that the average American consumes more than 3,400 mg of sodium each day.3 |
Fluid restrictions always come into play at some point for those diagnosed with heart failure. Typically, the oral fluid intake will be limited to no more than 2 liters daily for most clients who are having active symptoms. One easily visible way to keep track at home is to have them place an empty 2-liter pop bottle on the kitchen counter with a funnel in its top. Every time they get a drink, pour the same amount into the bottle. When it becomes full, they have reached their whole day's fluid limit. Remind them that ice, broth, pudding, soup, and Jell-O all count as fluids. Encourage them not to cheat, as “they” are the one who ends up miserable. The reason behind this ruthless lifestyle change is that the less fluid an individual consumes, without becoming dehydrated, the less fluid their heart is forced to push. On the plus side, some physicians are more lenient than others concerning fluid restrictions, so be sure to encourage clients to work with their physician and follow the plan of treatment he or she is orchestrating.
Not being in complete agreement with the treatment plan, especially in regard to medication-taking behaviors, is a typical frustration when dealing with any chronic disease. In heart failure, unwillingness or inability to take the prescribed routine medications in a consistent and timely manner is a huge problem. As heart failure is a persistent, progressive condition, regular medications will be prescribed in an effort to slow this progression. If a medication is missed, then irretrievable ground may be lost. Be sure that your client knows the seriousness of taking their medications as prescribed. Assure them that if they think one of the medications is having an undesired effect they should immediately call the pre-identified person (i.e., doctor, pharmacist, nurse) and tell them so that the medication can be changed or adjusted. As a nurse or pharmacist, make sure the client obtains a simple to use pill organizer which will hold at least seven days’ worth of medication and has four spacious compartments for each day.
Exercise is good. The client should be consistent, and not overdo it. If at all possible enlist your client in an official Cardiac Rehabilitation Program before they have shortness of breath on exertion. If you have to put together a program on your own, walking is the best exercise, but remember that some resistance training is desirable in order for them to feel and function better. The physician in charge should check the plan of exercise.
One good method of exercise is to get a treadmill (motorized is best) and use it regularly and consistently. Whether the client takes part in a formal exercise program or not, a person with heart failure needs to make time for moderate aerobic exercise, like walking, swimming or biking. Remind the client about the importance of always staying within the physician's recommendations and their own comfort zone. Here are some ideas of what to do and what to avoid:
Recommendations for patients who are already feeling physical limitations from heart failure include:
Consistency is the key concept with many of the lifestyle changes. Be sure to get across the concept of “weigh yourself daily - at the same time.” Daily weights are very important in monitoring fluid changes. So, have the client weigh daily (in the morning is best), after voiding, in just their birthday suit, and by all means write it down
Emphasize the point that if they gain more than 2 or 3 pounds overnight, they are developing edema even if it does not show yet. This means that extra diuretics may be needed so they will need to call the physician or nurse. Standing written instructions are needed for the heart failure client on whom to call, for what, and when to make the call. Another option is that the client may already have written information on whether or not to take an “extra” diuretic pill, and under exactly what circumstances to do this. Remind them that it is much easier to be in the habit of a daily weight and then make any needed correction than it is to get into a fluid overload cycle and end up in the local emergency room.
Regular blood tests will be needed, so write them on a calendar you share with the client and have the client plan on routine, scheduled laboratory draws. Potassium, magnesium, sodium and digoxin levels will be drawn routinely. It is a lifestyle change to be so closely monitored and connected to a health care provider, but it is a change that is necessary
Remind the client to inform his/her dentist of their diagnosis of heart failure. Heart medications, especially diuretics, can give a person a persistent dry mouth. The lack of saliva allows germs to stay inside the mouth instead of being constantly rinsed away naturally. This can lead to tooth decay, cavities and infection. Instruct the client to brush after every meal, floss if they can, and talk to their dentist specifically about their heart medications and dry mouth issues. They should make it a priority to see the dentist twice a year for teeth cleaning. In addition, if they have any “heart valve leakage” at all, their primary cardiologist may want to prescribe an antibiotic to take immediately before any dental work and again immediately afterward. Prevention of an infection due to dental issues is best.
Stress is still another important lifestyle change that requires discussion. Everyone faces stress. It might be at work, worrying about your children, racing to meet a deadline, or arguing with your spouse. We all can remember times when our heart was pounding, and we were breathing harder. People with heart failure need to avoid that kind of physical response to stress. Emotional stress and anxiety make the heart work harder, which can make symptoms worse. That is why patients and their caregivers should work together to keep stress under control.
Hard to do, isn’t it? It is very natural for people with heart failure to feel anxious about their diagnosis and what might happen to them or their families. And everyone has certain stress causing "triggers" - things such as rush-hour traffic, a demanding boss, finances, or family conflict. Stress cannot be completely eliminated, but there are ways to cope with it better. Here are some strategies for reducing stress4:
Lifestyle-related bad habits such as unhealthy substance use must be addressed in the client with heart failure. Some of the most interesting and engaging conversations crop up around these topics, and it is up to you as a health care professional to be kind, yet pointed about the life-shortening effects of poorly chosen coping tools.
Coach your client to stop smoking. Do not kid your clients or yourself; this will be a hard life choice to change. It is a choice however and can be measured out against things of importance to your client, such as “Do you want to be alive to attend your grandson’s wedding next year?” The progressive diminishment of cardiac output means oxygen starvation for all the organs of the body. Smoking impedes oxygen uptake in compromised lung tissues, just as nicotine increases vascular constriction – an unwanted effect in an already bloated, back-pressured blood system.
Heart failure clients should not drink, even socially. ETOH is a cardiotoxin. Alcohol is literally a poison to the heart which a healthy heart can generally tolerate, in moderate amounts. Heart failure, however, weakens the heart as an organ, as a system, and as a process. Stay away from alcohol.
Urge clients to avoid recreational drugs. All of the common street drugs are toxic to the functioning of the heart muscle. Yes, even marijuana. And Cocaine! Ouch! Heart attack up a straw. Just don’t. Talk to your client and let them know that should they feel the need to give in to temptation on any of these substances they need to have a discussion with their physician before they use, as routine medications may need to be adjusted.
Of all of the items just mentioned, tobacco smoking is consistently the hardest to overcome. Smokers who have heart failure can automatically eliminate a major source of stress on their heart by quitting. Each puff of tar and nicotine temporarily increases heart rate and blood pressure, even as blood struggles to circulate throughout the body. Smoking also leads to clumping or stickiness in the blood vessels feeding the heart. People who quit smoking are more likely to have the symptoms of heart failure improve. Lifetime smokers often need help to quit successfully. The healthcare team can provide information about smoking cessation programs, as can the American Lung Association or the American Cancer Society. The American Heart Association has also provided the following tips that may help smokers quit5:
Case Study: Julie, who is twenty-nine, is a nurse, and once home relieves her built up stress by drinking one glass of red wine. This seems to do the trick. She has been told that this has a therapeutic effect and has encouraged her co-workers to do the same. The problem with this is that one of her co-workers has more than one glass since two or three seems to be better than one glass. The co-worker has begun to call her at all hours sounding “drunk.” Julie has decided to speak to her co-worker when she is sober about getting help and stopping the practice of calling people while drinking, and discuss the effect it has had on her and others. Julie has volunteered to take her to AA meetings and looked into rehabilitation programs. Julie was able to explain that alcoholism is a disease and there is help available. The American Heart Association recommends that if you drink any alcohol, including wine, beer and spirits, that you do so in moderation. Limit consumption to no more than two drinks per day for men and one drink per day for women. That is generally 8 ounces of wine for men and four ounces of wine for women. Consumption of alcohol can have beneficial or harmful effects, depending on the amount consumed, age and other characteristics of the person consuming the alcohol. Heavy and regular use of any type of alcohol can dramatically increase blood pressure, cause heart failure, lead to stroke and produce irregular heartbeats. Heavy drinking can contribute to high triglycerides, cancer, obesity, alcoholism, suicide and accidents. AHA in their article, “Alcoholic and Heart Health” made the following recommendations for patients who are considering beginning or continuing to drink alcohol6:
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Discuss with your client how to purchase a Medic Alert Bracelet, and the importance of wearing it at all times. Being admitted unconscious to a hospital Emergency Room can be a fatal experience for a person with heart failure. It is essential that the emergency room and emergency services personnel know when a patient has preexisting heart failure, and it would be good if that person could communicate in some manner other than verbally what medication they are taking. So, have them get an appropriate bracelet or necklace, have it engraved with the appropriate warning/condition information and encourage that it be worn at all times. It is also a good idea to issue a wallet card listing all medical problems, all medications, and the physician’s and family's phone numbers. Please use every appointment as an opportunity to ask whether they are wearing and carrying their medic alert information.
“Wash your hands,” is another lifestyle change that is essential is for the client and family members to remember. Be direct. Tell your client and their respective family members, “You have a ‘weak heart,’ and you take a lot of prescription medications. This means you have a weaker immune system than you think. In order to prevent infection, wash your hands when you should. Here’s a brief reminder of when: after using the bathroom, after touching pets, after using a telephone, after shaking hands in a social or business setting, before handling pills or food, and after a visit to the physician’s office."
Frequent hand washing will reduce chances of getting infections such as colds or the flu. Reducing the likelihood of infections can make a very big difference in the quality of life since the bodily stresses created by a simple cold can jeopardize a client’s life that has heart failure. An additional safety tip is to encourage the client to carry a little squeeze bottle of waterless antibacterial hand cleaner rub. Hand sanitizers usually contain an externally applied alcohol solution that works to denature or inactivate bacteria and viruses. It can be purchased in the grocery store or pharmacy and serves well in areas where it’s a long time between sink availability.
Family members need to remember the frequent hand washing rule as well. Their hands can transmit potentially life-threatening infections to places where their loved ones might encounter them, i.e., telephone handsets, doorknobs, and many other sites.
Flu and pneumonia pose greater risks for death in people who have heart failure, or any heart condition, than they do to the general public. When someone develops a lung infection, they are unable to take in oxygen as efficiently as they should. The heart then has to work harder to pump oxygenated blood throughout the body. People with heart failure should avoid putting this extra stress on their heart. They should ask their physician about getting a yearly influenza vaccine and a one-time pneumococcal vaccine (to guard against the most common form of bacterial pneumonia). Both vaccines are generally safe and seldom cause any severe reactions. For a person with heart failure, it is much riskier not to have them. As much as possible, people with heart failure should avoid anyone who has a cold or the flu. They also should stay out of crowds during the height of the flu season.
Having heart failure requires an active watch by both the client and his/her caregivers in order to catch early indications of any change in symptoms. If anyone notices something new, or a sudden worsening of a current symptom, it is important that steps be taken immediately. Here is a sample of what to watch for:
Let’s talk sex. The client should be made to feel as comfortable as possible when raising this question and the health care provider should give calm, clear information. Heart failure does not mean the death of romantic intimacy. According to a new scientific statement issued by the American Heart Association, it is probably safe to have sex if your cardiovascular disease has stabilized. Most people with heart failure can continue sexual relations once symptoms are under control. “Some patients will postpone sexual activity when it is actually relatively safe for them to engage in it,” said Dr. Glenn Levine, director of the Cardiac Care Unit at the Michael E. DeBakey Medical Center in Houston. “On the other hand, there are some patients for whom it may be reasonable to defer sexual activity until they’re assessed and stabilized.” Dr. Levine also stated “that if you have unstable cardiovascular disease or if your symptoms are severe, you should be treated and stabilized before having sex”.7
Here’s what you need to know if you’ve been diagnosed with cardiovascular disease:
Other helpful guidelines concerning sexual activity suggested for heart patients by the AHA are the following:
People with heart failure should remind themselves that it is okay if they are not ready to have sex right away following the initial diagnosis or after subsequent physician visits. Feelings of stress, anxiety and depression are natural after a serious health diagnosis and often cause a transient loss of interest. Clients may need to work with their partners to demonstrate their love in other ways. Remember, you as the caregiver may need to explain this to your client's partner.
If a person has heart failure, they need to schedule time every day for rest and relaxation. Rest times are essential because it gives the heart a chance to pump more easily. Have them try napping after lunch, putting their feet up for a few minutes every couple of hours, or sitting down while doing certain household tasks, such as preparing food or ironing. Daytime rest can help keep them from "overdoing" which might bring repercussions much worse than a bad day or two. It also makes it easier to cope with feelings of tiredness caused by nighttime sleep interruptions.
Sufferers of heart failure sometimes find themselves awakened by symptoms such as shortness of breath and coughing. Their sleep may also be interrupted due to the need to urinate more often. This is a usually a result of the diuretics that are prescribed to help rid the body of extra fluid. If getting a good night's sleep is hard, then resting during the day is even more essential.
To improve nighttime sleep, recommend the use of pillows to prop up the head, and the avoidance of naps or big meals immediately before bedtime. Sometimes diuretics can be timed so they are less likely to cause nighttime urination. This usually means taking them in the morning and is a good subject for client negotiation with their physician.
Heart failure is not a static (unchanging) condition. Heart function may fluctuate or deteriorate for a variety of reasons. Factors such as excessive salt or fluid intake, a current illness such as flu or pneumonia, the presence of cardiac arrhythmias, varying degrees of anemia, the taking of medications which cause sodium retention such as some anti-inflammatory medications, periodic episodes of angina, can cause a worsening in the symptoms of heart failure.
Sometimes heart failure worsens for no apparent reason. When we educate the client, it is important to teach him/her how to predict the possibility of deterioration and to know how to react to correct condition deterioration before it becomes serious. The person with heart failure must be able to adjust to changes in their health in order to stay on course in their treatment. A little too wet and they become congested and short of breath. A little too dry and they become weak, fatigued and dizzy.
One of the proactive things that we can do for our clients with heart failure is to provide them with the tools to detect problems before they worsen. One of these tools is the ability to control incipient fluid overload. By paying close attention to how they feel, how much swelling is present at the ankles and especially to their body weight changes, an individual can get a good indication of their own fluid status.
It is important to stress that a little bit of swelling of the ankles at the end of the day is normal and indicates sufficient fluid in the circulatory system to allow a weakened heart, like theirs, to pump normally. More than a trace amount of swelling at the ankles, however, indicates fluid excess. This fluid may re-enter the central circulation when they lie down, increasing shortness of breath. One good general rule is if their body weight goes up by more than 2-3 pounds (1.0 kg) in one day or by 5 pounds (2.5 kg) over a week, they may be retaining too much fluid and worsening heart failure symptoms may ensue.
It is good practice to have your client write down their daily weight on a sheet that they bring into the office during appointments. You may also find that giving the client written instructions (i.e., “If a 2-3 pound weight gain occurs from the previous morning take 2 additional tablets of Lasix 20mg with your morning medication, and weigh again in the evening.”), will make their life much smoother. The following are example instructions for fluid self-monitoring.
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Your specific diuretic sliding scale instructions are as follows: (Example)
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It is a rich and wonderful world out there, and people have found things that are not prescription medications which aid in the control of a wide variety of health conditions. It is well worth the effort to build up your body’s overall strength and stamina as much as possible by eating a variety of nutritious well-prepared foods. It is also worthwhile to attempt to supplement food with vitamins and food materials when they are absent or lacking in the dishes that are available to you. Certain nutritional supplements have been linked to positive results in individuals with heart failure symptoms. A professional nutritional counselor or naturopathic physician may be of assistance if you desire more information on this type of supplementation.
Omega-3 fatty acids, aka fish oil, include eicosapentaenoic acid (EPA) and docosahexaenoic acid (DHA). Fish oil is known to help reduce serum triglycerides. Much of the documented cardiac benefits of omega-3 fatty acid use has been overshadowed by the push to utilize prescription statin medications. Fish oil supplements remain relatively safe to use and may possess mild to moderate vascular benefits. Be aware that a slight increase in bleeding time may occur so extra caution in conjunction with anticoagulant use is warranted.8
Coenzyme-Q-10 (a.k.a. CoQ10) is a fat-soluble molecule found in high amounts in heart muscle that many individuals with heart failure report helping them to feel better.8 Research has shown that CoQ10 is one link in a chain of nutrients that produce energy inside human cells. It is also an antioxidant, which is handy for overall health benefits. We know that because of its essential cellular activity all mammals require CoQ10 for life. A recent meta-analysis found small yet reasonably consistent increases in heart function, around 3.7 percent, in those taking CoQ10 supplements.9 Those who have experience with heart failure recommend a beginning dosage of around 30 mg a day, which is on the low side, up to around 200 mg daily, and to take the tablets with food, preferably something high fat like low sodium peanut butter. It comes in a sublingual liposomal spray form, gel caps and tablets.
Vitamin D deficiency has a strong link to developing cardiovascular disease.8 The need for vitamin D and magnesium in the absorption and utilization of calcium is not talked about enough between health professionals and clients. Recent studies suggest supplementation of vitamin D3 in heart failure clients with vitamin D deficiency may provoke a small yet significant increase in cardiac function of around 6 percent on average.9
Vitamin E is one of the most recognized supplements in nutritional health. It is a major antioxidant that has been demonstrated to retard cellular aging due to the ever-present forces of oxidation. This is important with compromised heart function in that better functioning support cells, for instance, those in the alveoli of the lung fields can then supply oxygen to the blood that is, in turn, carried to the heart and other organs. This helps to alleviate cellular fatigue, aids in the bringing of nourishment to cells, helps to strengthen capillary walls and both prevents, and aids in dissolving blood clots. Vitamin E has, in studies, shown to be helpful in cases of sterility, muscular dystrophy, calcium deposits in blood vessel walls and a wide variety of heart-related conditions. One caution about Vitamin E is, if you are going in for an invasive procedure, be sure to tell the physician or nurse how much E you take daily, as it does have mild blood thinning quality.
Multivitamins are something even an old-school cardiologist will agree with. There may be certain mixes of vitamins that are better balanced than others for the needs of individuals with heart failure, but the most important thing is to be sure you are getting a product with a high bio-absorbency rating, and that contains the water-soluble B vitamins.
Amino acids are a general grouping of supplements that make up the building blocks of tissue. Taurine has been shown to reverse heart damage in studies on canines with heart failure. It and another amino acid known as L-Carnitine both build and repair heart muscle. L-Arginine helps your body to produce nitric oxide, which is a substance that dilates the arteries and takes a load off in heart failure.
Magnesium is important as it helps reduce the incidence of heart arrhythmias, one of the most common forms of death in those suffering from heart failure.8 Some prescription diuretics such as Lasix, Bumex and Demadex deplete magnesium levels by their actions in the loop of the kidney nephrons. Magnesium and vitamin D are both necessary for calcium to be absorbed and used by your body. Magnesium is so important that a growing number of cardiologists are now giving intravenous magnesium during in-patient stays in order to help their heart failure patients. Selenium is another important mineral that is often found to be low in people with a chronic illness. Selenium helps your metabolism handle free radicals, and may be necessary for the best uptake of CoQ10. Chromium may also be useful for proper absorption of CoQ10. Many individuals with CHF have reported it to be helpful at up to 200 micrograms daily.
Calcium is a must. Diuretics will leach it right out of your system. Steroids like prednisone can drastically reduce calcium content and bone density in their very first week of treatment. Calcium citrate has a much better effect than calcium carbonate as far as bioabsorption goes. Bioabsorption is the rate at which material consumed is absorbed into your body. When you eat calcium carbonate (a.k.a. Tums, or chalk) your body has difficulty recognizing it as something to be absorbed. Instead, the body passes the bulk of it through along with any other nonorganic materials you may have eaten such as pieces of rock, shells or silica fragments. Remember when you do take calcium, if you have decreased magnesium or vitamin D in your system then there will be no calcium absorption by your gut! Amazing how all these things are intertwined. Also, heart failure clients should use caution when taking calcium, calcium supplements, calcium antacids or high calcium foods within 2 hours of taking their Lanoxin dose. Calcium and Lanoxin interfere with each other’s absorption, and you need to be able to get the proper amount of both of them to do their best.
It is a big job managing an intricate disease process such as heart failure. Frankly, it is too big for any single individual even to attempt. That is why a client with heart failure needs a healthcare team. A team that starts with and centers on the person with heart failure. The heart team involves and includes the patient's family, incorporates their friends, social groups and organizations, and the resources of the entire community into the process of making life livable for Team Member Number One, the patient.
Physicians, nurses, technicians, dieticians, social workers, pharmacists, and many more are an intricate part of the healthcare team. The goal is to create the best possible plan of care to make life as good as it can possibly be for the M-V-H-P (most valuable heart player).
So, with good training and the latest in available resources, the team must sit down and work together to provide the best possible care for the client. The optimal goal for the client is a good quality of life and/or good length of life. Sub goals are to slow the disease progression and hopefully, even stop it altogether while forcing the symptoms to lessen. Accomplishing these will include medications, lifestyle changes and possibly surgery.
It is fine to be in agreement as to goals and processes. But without following through with the plan of care, they are a waste of everyone’s time. In heart failure, the disease will progress. Always, it progresses. Whenever you lose an opportunity to treat it, you have lost ground. As we have seen, treatment comes in a wide variety of packages. Yet isn’t that a lot to expect of one person, to go it alone? It is. That is where healthcare personnel once again step in to assist.
Several management systems have been developed over the past years in answer to the decreasing availability of health care dollars and the difficulty finding resources for the management of long-term health clients. The advantage of some of the new systems is their ability to be applied to a variety of chronic illnesses, health care settings and target populations, with the end goal of healthier patients, support for health care workers and cost savings throughout the system.
In heart failure, disease management must focus on client and family support following the time of diagnosis with an emphasis on both acute and long-term health supports. In the long term, we must consider the use of community resources to control risk factors, the delivery of supportive medical care, support in life change issues and of course, client tracking. By concentrating on these core components, the client, their family and the health care system all benefit, allowing the client to take on the role of disease management using the support and services of the health care system and community as they control and manage their own life and health.
The acute management of a health crisis is often where heart failure is initially recognized and diagnosed. Generally, these are instances of angina, arrhythmias or respiratory difficulties. There are times when the condition is caught earlier in its course by an annual physical as an alert practitioner clues into observable factors. At other times the client or family may make an appointment with a physician to discuss troubling symptoms such as shortness of breath, lack of physical endurance, etc. No matter how it comes about, the time of diagnosis is when chronic management begins.
Once initial stabilization using medication or more invasive procedures is achieved, the physician and treatment team who will be working with the client should meet together with the family and the most important member of the treatment team, the client. Medication, diet, exercise and other lifestyle changes needed to control the symptoms and progression of the condition should at this time be discussed, and a consensus agreement reached. Be aware that not all individuals with a chronic condition such as heart failure will desire to participate in long-term management of their condition. This may be due to the timing, as it may take time for a person to mentally come to the place where they can admit having a life-threatening and life-limiting condition, let alone be prepared to work with it.
Follow-up visits need to be frequently scheduled with treatment team members in order to be able to implement the full range of chronic care management as soon as possible. Until that time, the various members of the treatment team such as physicians, nurses, a social worker, dietician, physical therapist, pharmacist and other specialists (as needed) should work with the family and client to the extent possible. Their mutual goal is to minimize the disease symptoms and increase the client’s participation in their own wellness.
Each area of impact identified in the client's life should be addressed in an individualized, written, treatment plan.
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Community-based resources can support or expand a health system’s care for chronically ill patients, but traditional health care models are simply not able to make the most of these resources. A single health care provider or institution might form a partnership with a locally based establishment such as a senior center that provides exercise classes in order to leverage an extra advantage to its elderly patients. Yet that is often as far as the effort goes. Buying group memberships for clients in health clubs with individualized trainers, making alliances with massage and physical therapists, seeking hobby level dance groups, walking clubs, cooking clubs, kite flyer groups… the list of possibilities is endless. Ask yourself this…Does your chronically ill client spend afternoons at the zoo rocking the leopard cubs? Do you have former clients visit with the newly diagnosed to explain the life-changing benefits gained from participating in an exercise program? Do you believe that clients only benefit from treatments they hate?
Other organizations and special interest groups can provide information and support to our clients. Departments of health and local public or private agencies often have a wealth of helpful material available for the asking. National organizations such as the American Heart Association or the American Diabetes Association can often help by providing literature, community contacts, and promoting self-help strategies. By looking at the existing resources available all around us, the health care system can enhance care for its patients and avoid duplicating effort.
What it comes down to, is that health care does not just end for the client because they are over an acute episode. A schedule of frequent check-ups combined with weekly status calls from nursing to check on and encourage clients should be a standard practice in chronic management. Many systems that focus on diabetic, coronary artery disease or heart failure patients (for example) have incorporated telephone triage and assessment systems. This allows the client to call in at any time and have an immediate initial response and needs assessment. If a specific health provider needs to call them, that person is informed and can return their phone call in a prompt and practical manner. Routine calls from the treatment nurse assigned to that client can provide support and assessment of ongoing needs. This system has worked well for the management of diabetic clients and clients with histories of cardiac arrhythmias. Health care systems across the country are looking at telephonic systems to provide cost-effective coverage for their clients, keeping them in good condition and away from expensive hospital stays.
Coping successfully with chronic illness means coping with life change. In order to adjust to different lifestyles, diets, activity levels, etc. a person has to be willing and then able to change their life situation. Some measure of support can be gained by community involvement, some from family and friends. As health care professionals we must, first of all, acknowledge that it is the client, and not us, that has the responsibility for that individual’s life decisions. We can offer verbal, technical and resource support, but we cannot make a person change. If they do want to change then frequently scheduled meetings with treatment team members can help to provide them with the information they need to make good decisions. These are also opportune times to offer resources for community and social support, to check on progress and verbally support and encourage. Weekly phone calls can also be encouraging, and no one should have to wait for weeks at a time in order to get an appointment.
So, how is your client doing with their medication changes? Are they having trouble with their new diet? Are they really doing the exercise program you helped them work out as safe to do?
One of the difficulties with the health care system is that we just don’t talk anymore! One visit every three months that is limited by program oversight committees to fifteen minutes or less is simply not adequate. If you cannot call your client and check in on them, maybe a nurse hired just for that purpose can. Telephonic triage systems using trained nurses are becoming an accepted method of maintaining contact and tracking the well-being of clients. Once initial set up costs are made, the long-term gains have been very positive financially. Clients are happy, health care systems can avoid costly emergency room visits, and acute crisis situations can often be avoided, to the relief of insurance companies everywhere!
Inevitably, whether it is in the first five years post-diagnosis or delayed for a longer time, death comes from heart failure. Education of both patient and family regarding the expected or anticipated course of this illness is a must. Final treatment options, advanced care directives and all planning that is necessary for this outcome must be discussed and completed before the individual becomes too ill to participate in decision making.
Only recently have hospice services expanded to include those who are dying of heart failure. Originally hospice care was developed for those who were in the final stages of terminal cancer, but now care has been expanded to include the relief of symptoms other than pain. This was a wise and caring decision, and hospice workers are to be commended for the difficult task they assume. Family members of heart failure clients agree that it is not the pain that is the symptom most burdensome to the end-stage heart failure sufferer, but rather breathlessness. Therefore, compassionate care may require the frequent administration of intravenous diuretics, the use of supplemental oxygen, and in some instances, the infusion of positive inotropic agents to provide symptom respite rather than the use of potent analgesics.10
The time of diagnosis is when to begin the ongoing process of advanced care planning, including end of life care. Heart failure is a dynamic, often swiftly changing process. Interactions with environmental influences (e.g., unseasonal heat waves, a harsh allergy season, stress brought on by regional weather disasters, etc.) and routine public health patterns (e.g., flu season, grandkids bringing colds from school, norovirus at the senior center, etc.) can crash a hard-stabilized client metabolism, bringing the possibility of circulatory or respiratory failure. Thinking early about what care decisions, what life priorities are most important is an essential part of living with heart failure. Remember, care goals can always be revisited, rethought, rewritten. The most important piece is that there be goals for the end of treatment, and by this, we mean end of life, care.
Goals of care are not simply a euphemism for “code status.” Goals of care include making decisions about specific treatment preferences, the depth or intensity of care provided during each stage of the disease process, as well as future care planning, e.g., what advanced care choices are preferred. Not all care goals are medically oriented. For example, how each individual wants to live their life and what they prioritize as desiring to accomplish in their remaining span is overwhelmingly important. Are there people they want to see, relationships they desire to mend, tasks they are driven to complete, events or special occasions that are significant to them. Making the determination of how your client regards length of life versus quality of the life lived, and getting understanding down in the care plan is important for everyone.
While the goals of care work toward prolonging independent living, home care, and assisted care each as long as possible, knowledge of end of life care is an important piece in comprehensive care planning. Here in the United States, hospice eligibility and referral guidelines are, to a large extent, guided by Medicare policies. Medicare tends to handle end of life referrals according to disease-specific criteria, with end-stage cardiovascular conditions be one of the, if not the largest, life-ending state that comes their way.10
Eligibility for hospice assistance requires a physician estimates six months or less remaining life expectancy and must meet the following criteria:
Factors from criteria three are not necessary, however, serve as supporting documentation.
Heart failure is exactly that. The process in which the overburdened, taxed beyond repair core of the circulatory system struggles to hang on as long as possible before succumbing to the inevitable final collapse. The resulting fluid buildup, congestion and accompanying stagnation of life processes is reflected in the descriptive name of Congestive Heart Failure that we are so familiar with. Currently, there is no cure for a failing heart. Medications, good nutrition, support systems, therapies and procedures can slow the disease progression and provide varying degrees of symptom relief, yet what is truly needed is a new heart to take over the burdens of the failing one.
Science and medicine are working on that. From heart transplants to total artificial hearts, repairing parts of the existing failing heart, and by finding ways to mechanically assist the heart in failure to function better are all real world, here today, kinds of things. New drugs, new surgeries, new hope for a better quality of life and a longer fuller life-span are the goals of today’s medical therapies. Together with all encompassing, at times drastic, lifestyle changes, the person with heart failure has more to look forward to than wasting away and waiting for death. And, should all else fail, helping to ease clients into a loving goodbye. It is our job, all of us in the healthcare field, to be participants in the fight against heart failure by early recognition and management of this difficult condition. Together, using all of our skills, we can make a difference in the effort to control one of the biggest killers of our time: heart failure.
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