Talking about Involuntary Weight Loss
The significance of Involuntary Weight Loss (IWL) as an indicator of overall health has only recently come to the forefront of medicine. Standard ‘vital’ signs for a medical evaluation include temperature, pulse, blood pressure and respiration. They allow the clinician to assess the evident measures or ‘vitality’ of life. And while the ‘vitality’ of the patient may not be ‘measurable’ as such, the appearance of a person experiencing progressive weight loss is usually obvious to any observer – clinician, family or friend.
Sudden Weight Loss
Physicians may overlook involuntary weight loss while focusing on other more pressing aspects of disease, such as tumor size and metastases in patients with cancer, or viral load and the presence of other infections in AIDS patients. That is why it is now appropriately being referred to as the forgotten ‘vital’ sign by many clinicians. While some clinicians may take observable weight loss into account, they don’t distinguish between the losses of fat versus muscle. The measurement of lean body mass (LBM) loss and its significance to patient survival is critical to evaluating the whole patient and designing an appropriate treatment regimen.
People with IWL often complain that they “don’t feel like themselves.” When they look in a mirror, the frail, skeletal appearance – thin arms and legs, drawn faces and sunken cheeks and eyes – is a constant reminder that they are facing a potentially deadly disease. Depression, a loss of self-esteem and self-confidence, is often the result in the change in body shape. People who are depressed and fatigued are less included to takes stepts to improve their health, such as preparing and eating regular nutritious meals and exercising. This is why the family and caretaker of the person suffering from IWL need to intervene, helping the patient to take the actions necessary to treat IWL.
In today’s healthcare environment, the patient and family are viewed as important members of the health care team. This means that it might be up to you to initiate a discussion about IWL with the medical team responsible for treating the patient’s disease. In order to do this effectively, it is important to understand the specific role that each medical practitioner plays in the overall treatment of IWL. By asking the right questions, you can then advocate for the most appropriate medical treatment.
Physician or medical doctor: The physician orders all medicines and laboratory and diagnostic tests. If you notice that you or your loved one is losing weight, it is important to discuss this with the physician immediately. Record your weight daily and bring the weight log to your next visit to begin the discussion. Request that protein levels be evaluated by lab tests such as albumin or prealbumin. Ask if your doctor recommends body composition analysis to monitor changes in lean body mass. Finally, ask your doctor if a prescription for an appetite stimulant or anabolic agent may help. Remember, not everyone is a candidate for drug therapy. There are several medical conditions that may contraindicate certain types of drug therapy.
Dietitian: The job of the dietitian or nutritionist is to give you specific advice on what to eat. The dietitian also monitors weight and laboratory data and is in frequent communication with the doctor about your plan of care. The dietitian may make recommendations to your doctor about a therapeutic diet, vitamin and mineral supplements, and drug therapy. It is the job of the dietitian to keep up with the latest advances in the field of medical nutrition therapy (MNT) so the dietitian may be your best resource as to what is new and cutting edge in nutrition. Ask your physician if he has a dietitian on staff or can recommend one. When you see the dietitian, ask for high calorie/high protein recipes and how to track your calorie and protein intake. If you have problems with nausea or vomiting, ask the dietitian to suggest foods that you can tolerate.
Pharmacist: Your pharmacist is the team member most familiar with drug monitoring. When you go to your local pharmacy to obtain your prescription medicines, ask to speak directly to the pharmacist. The pharmacist can tell you the best time to take each pill, whether or not to take it with food, how each drug interacts with both food and other drugs, and any side effects you should watch for. Tell the pharmacist you are losing weight and ask if any of the drugs you are currently taking may have anorexia or loss of appetite as a side effect. An equivalent drug may be available that does not have the same side effect.
Social Worker or Case Manager: Your social worker or case manager has the role of patient advocate. If you do not receive a satisfactory response from your medical team about your care, discuss your concerns with your social worker or case manager. If you believe you need certain tests or drug treatments and you have been denied, it is up to you to discuss this with your advocate. Often, there are ways to negotiate a different course of treatment with the proper documentation.
The key is to remember that there is nothing to be embarrassed about or ashamed of in discussing IWL. Take every opportunity to discuss it with your various health professionals because every person has different information and a different perspective. The very best outcome for you will come from informed and open communication.
Learning More about Involuntary Weight Loss (IWL)
The hallmark of catabolic involuntary weight loss (IWL) is the massive depletion of lean body tissue, which includes muscles, internal organ tissues, blood cells and intracellular and extracellular water. Cancer cachexia, AIDS, and chronic obstructive pulmonary disease are several examples of particularly devastating forms of IWL that compromise quality of life, decrease survival and increase complications and costs of healthcare. If patients with chronic obstructive pulmonary disease (COPD) with weight loss are included, greater than 5 million Americans will be defined as suffering from significant IWL in 2003. This number escalates significantly with the addition of those who experience the age-related weight loss condition known as geriatric sarcopenia. (1)
Involuntary or unintentional weight loss may be obvious, as in advanced cancer or AIDS, or can be more subtle and insidious. Since two-thirds of US adults are estimated as being overweight or obese, IWL – which is predominantly the loss of muscle or lean body mass – can be ‘hidden’ until reaching an advanced stage. (2) Clinicians are now beginning to understand the devastating effects that IWL can have on patients and have started to refer to this condition as the forgotten ‘vital’ sign.
Standard ‘vital’ signs for a medical evaluation include temperature, pulse, blood pressure and respiration. They allow the clinician to assess the evident measures or ‘vitality’ of life. And while the ‘vitality’ of the patient may not be ‘measurable’ as such, the appearance of a person experiencing progressive weight loss is usually obvious to any observer – clinician, family or friend.
The following sections are written for the family and caregivers of persons experiencing IWL. Additionally, external links are provided to act as further resources for those seeking additional information on a particular disease.
Caring for Someone with Involuntary Weight Loss (IWL): Exercise, Diet and IWL
1. Exercise and IWL
Exercise is extremely important and you should encourage its inclusion in any plan for a patient to prevent and treat involuntary weight loss. Exercise helps ensure optimum results of any drug or vitamin therapy by helping the body maintain and restore lean body mass (LBM). Inadequate exercise (or other factors) may be responsible for the unequal distribution of fat vs. lean body mass. While LBM has been linked to survival, fat mass has not.
With involuntary weight loss, the loss of lean muscle or tissue contributes to fatigue, as well as the decreased ability both to function in everyday activities and to fight off infection. In addition, this loss can lead to a wide range of conditions that can impact an individual’s ability to fight the underlying disease and tolerate its treatment. Significant weight loss and specifically, lost muscle, is one of the best predictors of survival and risk for complication in diseases such as cancer, HIV/AIDS, COPD, and in a number of conditions relating to the elderly.
Studies of individuals who attended scheduled exercise sessions noted improvements in their health. Other studies have concluded that individuals can experience significant increases in muscular strength and heart and lung fitness. Still others have also determined that exercise may activate the immune system, helping the body fight off infection. However, overtraining can suppress this immune function. People fighting involuntary weight loss should consult with their physician and choose one that best fits their needs, physical abilities and overall schedule.
You can encourage the patient to undertake regular exercise if you make it a pleasant and regular routine. You might also wish to engage in the activity with the patient yourself to make it more enjoyable. Regular walks, bicycle riding and other forms of “joint” exercise, if not too difficult for the patinet, can be fun and rewarding experience and provide a useful respite for both you and the patient.
Resistance exercise is considered the best form of exercise to build lean muscle tissue. Free-weight training, resistance bands, exercise-machine weight training, etc., are among the most popular kinds of resistance exercise programs.
Although, under normal circumstances, aerobic activity such as bicycling or jogging, should be included as part of the exercise program, the goal is to increase lean muscle tissue; therefore, it is highly recommended that focus be on resistance exercise or training with light weights. What is correct for an individual is only to the level of exercise where there may be some soreness in the muscle, not to where you can no longer exercise. The patient should “listen” to the signals his/her body is sending and exercise accordingly. Before beginning any exercise program, patients should have a complete physical examination and consult a certified exercise trainer or physical therapist.
2. Dietary Needs
Taking care of a loved one who is suffering from IWL can be a very draining and time consuming task. The caregiver may feel the need to constantly prepare meals and snacks, and serve food in hopes of having the patient gain weight. The jobs of food shopping, meal preparation, and kitchen clean-up can seem overwhelming after just a few weeks, particularly if the patient is unable to eat the meals or continues to lose weight despite your efforts. Fortunately, there are many ways to make these jobs easier and more enjoyable.
- Plan the meals for the entire week so you will know exactly what ingredients you need to have on hand and thereby avoid extra trips to the market.
- Prepare extra portions and freeze the leftovers in individual sized containers.
- Plan meals that are high in protein. This means lean meats, poultry, fish, and eggs. Try to include a high protein item in each meal. It is okay to use convenience foods but take time to read the label. Look for the words “reduced sodium” or other indications that you are buying the healthiest brand available. Even though you are trying to have your loved one gain weight, you do not want to load up on sodium or fat.
- Many patients find several, small meals throughout the day easier to tolerate.
- Serve comfort foods. These are typically items that we consumed when we were youngsters. Some people like foods they remember their mother or grandmother preparing.
- Serve foods with a good aroma. There is nothing like the smell of chocolate chip cookies baking to get the appetite going.
- Find recipes that are quick and easy to prepare and require only a handful of ingredients.
- Consider using a crock pot or slow cooker for quick and easy meals. Meals prepared in a crock pot or slow cooker are a good choice for patients who may have difficulty chewing.
- Add protein powder to meals. Protein powder is available in your local drugstore and can be added to cereals, beverages, and other foods.
- Patients with cancer often develop aversions to certain foods or flavors. Be aware that this might occur and avoid these items when preparing meals.
- If you do not have time to prepare a meal, serve a meal-in-a-can such as Ensure. These types of medical nutritional drinks are high in protein and calories and can be served as a meal replacement or a snack.
- Make meals more enjoyable by limiting distractions such as the television and using this time to socialize.
- Try to eat by the clock. Schedule regular meal times and adhere to the schedule so that a pattern develops.
- Remember, the old saying “We eat with our eyes first.” Meals should be visually appealing. Use your pretty plates and silverware and set the table for meals.
- Don’t overload the plate. Many people feel overwhelmed when they see mounds of food on the plate.
- Do not rush meals. Take as much time as needed to consume each meal.
- Do not make meal time a battle time. Encourage your loved one to eat as much as possible but don’t force the issue.
- Keep snacks in the den, bedroom and other easy to reach places. You can even keep snacks like a box of raisins in a bathrobe pocket where they are readily available.
- Include protein in each snack. Easy snack items include hard-boiled eggs, strips of turkey or other cold cuts, cheese wedges, and milkshakes.
- Drink fluids throughout the day to prevent dehydration. Avoid sugary, carbonated beverages in favor of protein drinks. There are many varieties of protein drinks available at the local health or whole foods market.
- Be creative with snacks and cater to your tastes and tolerances. For example, breakfast items can be eaten for dinner if that is the meal you enjoy most.
1.Lazarus, TS, MD, Purdy, DW. Preventing and treating wasting with medicine, nutrition and exercise. Numedx, Fall 1997, p.31
The Emotional Side of Involuntary Weight Loss (IWL)
It can be extremely disheartening when you do the very best you can for your loved one and still watch him lose weight and become thinner and more gaunt. Many caregivers may even blame themselves or feel angry that they can’t resolve the situation no matter how many meals or snacks they serve. It is important to recognize that IWL is a complicated metabolic process with many factors contributing to the decline in weight. In many cases, the combination of adequate intake and the right medicines can reverse the weight loss but this is not true in every single case. It is also important to remember that it may seem like the weight was lost overnight but it probably occurred over a period of weeks or months. It will typically take several weeks or even months to regain the lost weight.
Equally frustrating is the emotional state of the patient. Even if left unspoken, the patient can feel the caregiver’s frustration, and this often grows into anger. Your loved one may try his best to eat and want to make your task as easy as possible but he may still lose weight. Both parties are now frustrated, angry and disappointed. The feeling of not being able to please the caregiver may spiral out of control and turn into feelings of depression.
If you find that you are caught up in the emotional side of IWL, try these strategies:
- Talk regularly with your physician, dietician, and other healthcare team members, friends, family, clergy, or a mental health professional.
- Join a support group. Support groups are available through your local hospital or you can even join an online support group. External links in this website also provide information on support groups
- The caregiver must take care of him or herself. This includes eating properly, getting adequate sleep, and taking breaks from being the caregiver.
- Set realistic expectations. Your loved one cannot gain ten pounds in one week. Strive for small, reachable goals.
- Accept help. Family and friends may offer to assist you. Accepting help does not mean that you have failed in any way.
- Arm yourself with information. For some people, taking charge of their own situation gives them a sense of control.