Articles of Interest

Cachexia Syndrome

Heather Thomas RCN, BN

More than sixty years ago it was observed that malnutrition and weight loss contributed to the death of cancer patients. This has more recently been termed cancer cachexia syndrome and is described as pathological malnutrition where appetitive is reduced while at the same time body metabolic rate increases and lean body mass is lost (Winkler, 2004). The result is broad physical, psychological and social distress; poor performance status and decreased quality of life. Cancer cachexia syndrome (CCS) affects 80-90% of people with advanced cancer (August, 2003). This prevalence, along with the fact that people with advanced cancers are living much longer with the benefit of third and fourth line anti-cancer treatments, highlights the need for increased understanding of the syndrome and improved patient management. Because weight loss decreases survival time, response to treatment and performance status; effective management would extend survival and quality of life (August, 2003, Inui, 2002, Whitman, 2004).

In this paper, the aetiology of CCS and its’ physical, psychological, social and existential impact on patients and families will be discussed. The relationship of CCS to palliative care, ethics, law and economics will be explored briefly. Management will be discussed with an emphasis on current and future nursing contributions. Gaps in knowledge and opportunities for research will be identified.

Cachexia syndrome is a complex metabolic process that occurs in many advanced disease processes. Cachexia of cancer has been studied more and is better understood than cachexia of other diseases. CCS is characterized by anorexia, wasting of body mass and asthenia. It appears to be consequences of decreased food intake and metabolic abnormalities (Albert Palliative Network, 2004). Appetite is lost early in the process with no obvious clinical reason. Weight loss follows. Loss of weight in healthy individuals is usually a potent stimulus to food intake but the persistent anorexia of CCS suggests a failure of the adaptive response (Winkler, 2004). The associated metabolic changes are very unlike the self-preserving response to simple starvation that occurs in healthy people. In CCS a hypermetabolic state ensues that includes: decreased protein synthesis; increased protein breakdown; increased synthesis of protein in the liver; increased gluconeogenesis; increased insulin resistance; increased lipolysis and deceased lipogenesis (Eberhardie, 2002; Winkler, 2004). The net result is loss of body protein and fat mass. Circumventing the loss of appetite by feeding artificially generally results in poor response (August, 2003, Winkler, 2004) but continues to be studied.

It is proinflammatory cytokines (interferon y, interleukin 1, interleukin 6, tumour necrosis factor) induced by the tumour and the host-tumour interactions that are believed to be the mediators of CCS (August, 2003; Strasser & Bruera, 2002; Winkler, 2004). Tumour derived catabolic factors (proteolysis-inducing factor and lipid-mobilizing factor) participate in tissue loss (Strasser & Bruera, 2002). Autonomic failure, related to interplay between hormones, brain and the gut results in delayed gastric emptying, early satiety and chronic nausea so typical of CCS (Inui, 2002; Strasser & Bruera, 2002).

The extent of CCS is of prognostic significance and depends on the type and site of tumour. It is most sever in upper gastro-intestinal, head and neck, and lung malignancies and less common in breast and lower gastrointestinal cancers (Eberhardie, 2002; Winkler, 2004).

Distinctions are made between primary and secondary cachexia (Strasser & Bruera, 2002; Winkler, 2004). Primary cachexia is malnutrition for which no specific tumour or treatment related cause can be identified. Secondary cachexia refers to an inability to ingest, process or use nutrients and may be caused by factors that are potentially treatable. Examples are: alterations in oral tissue, taste or smell; swallowing difficulties; obstruction or malabsorption; side effects of therapy; pain; cognitive impairment; depression and anxiety. Primary and secondary cachexia can co-exist.

Absolute criteria for the diagnosis of CCS have not been stated but generally are accepted to be an involuntary weight loss of 5% (10% in obese patients) that occurs over two to six months with no obvious clinical cause (Inui, 2002; Winkler, 2004). The weight loss is often combined with muscle wasting, anorexia and fatigue.

The body requires a well balanced diet to survive, repair tissue and to meet energy demands. Just as pain is non-linear and multidimensional so is CCS a complex bio-psycho-social-spiritual experience. The participating factors and relationships are not completely identified or understood. Some of the physical consequences of CCS are loss of strength and functional ability, changes in mobility, falls, skin breakdown, constipation and increased risk for venous clots. Physical tasks of obtaining and preparing food become overwhelming for the person living without daily instrumental support and further exacerbate the problem.

Sharing food, preparing food and eating together is a profoundly important social urge that symbolizes love, security, intimacy, sociality and our place in society (Fox, 2004; Ghosh, 2004). CCS changes the social aspect of food and the individuals own relationship with food and eating. Consequences for the patient include: isolation, decreased social interactions, changes in role performance, anxiety about food consumption and weight, negative self-image and feelings of loss of control over ones own body (Blacker, 2002; Eberhardie, 2002). Adapting to the notion as food as fuel only may require large behavioural changes that may not be possible because of limited physical and psychic energy.

Feeding a loved one is an expression of love and caring. Families and care-givers experience feelings of helplessness and desperation when a loved one does not eat. It is difficult to reconcile that the patient is physically able to eat but doesn’t want to or will not eat. This can be interpreted by families as evidence of their own failure to provide adequate care. Eating can become a source of stress and develop into conflict between patient and family or between family members (Blacker, 2002; Fainsinger, 2004). Fainsinger points out that patients and families do not always agree on the significance of decreased appetite and caloric intake. Loved ones may erroneously believe that if only the patient would eat than weight and vitality would return. All may experience feelings of guilt or resentment.

The specific effects on children are not explored here. Often, the impact of eating difficulties for families is not acknowledged and people may seek invasive nutritional interventions or alternative nutraceuticals (Eberhardie, 2002; Whitman, 2001).

Although the literature does not address the economic and wider social effects of CCS, it follows that the weakness and dependency on the patient’s part and the burden and stress that care-givers experience will have other impacts. Care-givers may have to reduce or leave paid work, withdraw from social and community endeavours or become ill themselves. The need for community services will increase and when those supports become insufficient or ineffective then expensive hospital stays may be necessary.

A multi-disciplinary and collaborative approach to assessment, decision-making and intervention is widely advocated (Alberta Palliative Network, 2004; Eberhardie, 2004; Hopkins, 2004, Wilson, 2000) and includes nurses, dietician, pharmacist, physician, the patient and family. Thirwell (2004) adds the physiotherapist to the team. The literature around CCS infrequently makes reference to disciplines of physiotherapy, occupational therapy and pastoral support but the wise nurse knows the value they can be to patients who are undergoing changes in energy, functional status, independence and self-concept. The nurse is in a key position to monitor continuously for the effects of nutritional deficits and then triage patients into the multidisciplinary process.

Strasser and Bruera (2002) illustrate the use of a model of assessment and management for CCS that is holistic, logical and evidence-based. Validated assessment tools are incorporated. Assessment includes:

1. symptom by visual analogue scale (VAS)
2. oral intake
3. body composition (using clinical judgment, serum albumin, dual energy x-ray absorptiometry, estimation of body water, circumference and skin-fold thickness)
4. function; using Karnofsky performance status, EFAT (Edmonton functional assessment tool), FAACT (functional assessment of appetite cachexia therapy), dynamometer to measure strength.
5. causes: aggravating factors/secondary cachexia
6. integrity of gastrointestinal tract
7. overall condition of patient and family: emotional impact; oncologic situation and prognosis, psychosocial and existential symptom distress, attitudes to patient and family towards nutritional and goals.

Decision-making follows assessment. The health care team, patient and family all participate in the following steps:

1. negotiate individual goals
2. define appropriate outcomes (improve body image, improve function, reduce symptoms, extend life expectancy)
3. determine usefulness for patient
4. determine prognosis and antineoplastic treatment
5. consider patient/family attitudes
6. consider costs

A seventh point could be the consideration of practical issues of environment and patient/family strengths and limitations.

The outcome of decision making according to this model is a nutritional support plan that specifies the following approaches or combinations of them:

1. manage treatable causes/aggravating factors
2. give artificial nutrition
3. provide pharmacological support

Not included in the above mode is one of the most powerful interventions suggested in palliative care literature. That is the provision of dietary counsel, clear information about the CCS process and ongoing support founded on high level communication skills.

It is the oncology nurse who is in the most opportune position to screen for and identify patients with nutritional problems and to initiate interventions. Wilson (2000) advocates an approach that begins with conversation with patients and family to elicit the attitudes towards the emotional, psychological and social function of food and then gently investigate what changes may be occurring and what they mean. Holland (2001) offers this quote from Buckman about communication. “communication is an important part of therapy…it usually requires greater thought and planning than a drug prescription, and unfortunately it is commonly administered in sub-therapeutic doses.”

The nurse is often in the closest and most privileged position to explore the minutiae of troublesome symptoms and offer concrete and specific suggestions. Aggravating factors can be minimized when the aetiology is well understood. For example, taste and smell changes can be related to changes in sensory organs. Aversion to smell and taste of meat is not uncommon and is related to the tastes bud’s loss of sensitivity to bitter taste (Innui, 2002). Changes to the perception of sweet tastes in are also common. With such education, patients and families can modify cooking and food choices appropriately. Basic nutritional recommendations include: high protein, high calorie meal plans; small feedings throughout the day; beverages after meals; targeting the largest meal (usually breakfast); incorporation of food supplements and addition of whey protein (Thirlwell & Swinton, 2004). Dietary counsel should not be an isolated intervention but rather ongoing, creative and individualized. Remembering the fatigue that comes with CCS should cue providers to use contacts (telephone, mail and email, home visit) that minimize energy expenditures for the patient. Validation of the patient’s and family’s attempts to maintain nutrition should be done frequently.

Nurse are also key to preparing patients and families in the early stages of advancing cancer for the changes in weight and eating that will follow. Involving the patient and family in the process when assessing nutritional status; providing information; and when planning/evaluating interventions returns a sense of control and autonomy to the patient (Thirwell & Swinton, 2004) and confers clinical benefit (Jatoi, 2001). Families also need help to distinguish between the normal progression of disease, over which they have no control, and things that they can do to help their loved one (Hallenbeck, 2004). They need a navigator to assist them to explore the emotional impact and meaning of the patient not eating, losing weight and losing strength. And they need an interpreter to help them understand the differences between starvation and cancer cachexia.

Additionally, nursing has an educative and support role around the use of complementary and alternative therapies. Patients will often not disclose this information unless specifically asked (Wilson, 2000). Nutraceuticals are biological therapies used to promote wellness and control symptoms. They include herbs, food supplements and special diets. The use of complementary nutraceuticals is increasing as consumers change their eating patterns, have concerns about the adequacy of the food supply, or find interactions with providers of complementary and alternative therapies to be more satisfying than with conventional providers. Complementary and alternative medicines practitioners have a reputation for having more time, being more gentle and reassuring than traditional health care providers (Whitman, 2001). Nurses who are sensitive and informed about complementary nutraceuticals can skilfully negotiate with their patients around the four primary considerations which are: efficacy, toxicity, dose and cost.

Other interventions that may be offered by conventional medicine are pharmacological and these are unfortunately few. Glucocorticoids have been shown to have significant positive effect on nausea and pain. They may improve appetite, food intake, sense of well-being and performance status in patients with advanced cancer for up to four weeks (Inui, 2002; Strasser & Bruera, 2002). Most studies however, fail to show any gain in body weight. Megestrol, a derivative of the hormone progesterone, has been demonstrated to improve appetite, caloric intake and nutritional status but the effect on quality of life is uncertain (Inui, 2002). Prokinetic drugs such as metaclopramide can reduce chronic nausea and early satiety that are due to autonomic dysfunction (August, 2003). Assessment of patients who may benefit from pharmaceuticals, patient education around ideal administration, and monitoring for side effects are important nursing actions around such medication therapy.

The matter of artificial nutrition is a vexed one. Often termed specialized nutritional support (SNS), it can be enteral (EN), or parenteral (PN) and take place in hospital or the home. Its use in advanced cancer is controversial and stems from the question about whether SNS is a medical treatment or a basic care. And is its use consistent with the accepted definition of palliative care? As more patients live longer with advanced cancer it is important to clarify what palliative care means in regards to nutritional support.

Early palliative care is the period when the patient is diagnosed with disease that cannot be cured. While the diagnosis may be life-threatening, death is not likely to be imminent. The patient may have weeks to years of good quality of life with appropriate clinical management (Eberhardie, 2002).

In late palliative care, quality of life is harder to maintain. The patient is progressing toward the end of life on a “continuum brought about by his condition and his physical, mental, social and spiritual response to it” (Eberhardie, 2002). Patients with advanced cancer are not curable and fall under the World Health Organisation’s definition of palliative care which states that “palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems…” (Sepulveda, Martin, Yoshida & Ullrich, 2002). Important tenets include that palliative care: intends neither to hasten nor postpone death; and will enhance quality of life and may also positively influence the course of the illness.

The challenge for health care practitioners is to acknowledge the uncertainties around the boundaries of palliative care. Fainsinger (n.d.) advise that some therapeutic options may indeed knowingly prolong life as much as they confer quality of life for patients and families. At this time the majority of state laws and professional groups consider SNS as a form of medical treatment (August, 2003; Bozetti, 2003; Capitol Health, 2002). It can then be argued that practitioners have a duty of care to offer it to patient if it is effective (Eberhardie, 2002; Whitworth, 2004). The evidence to date suggests that use of SNS for patients with advanced cancer (palliative patients) is rarely indicated. The very small population of patients who may benefit are young oncology patients with a non-functioning gastro-intestinal tract, high quality of life and a life expectancy in the order of months (August, 2003; Bozetti, 2003; Capital Health, 2002; Ripamonti, Twycross, Baines & Bozetti, 2001; McKinlay, 2004).

Although PN is acknowledged to be costly, invasive and not without the risk of serious complications, its use in the oncology population is rising. In the U.S.A. and parts of Europe oncology patients comprise up to 40% of new home PN patients and in Italy, 67% of oncology patients receive home parenteral nutrition (Alberta Palliative Network, 2002). In New Zealand there is no published data on the use of parenteral SNS for patients with advanced cancer. Personal communication with leaders of nutritional teams in two district health boards suggest that PN for patients with advanced cancer is still highly unusual in New Zealand (Alana Brokenshire & Clare Stott, October 20, 2004).

Given the trends in other parts of the developed world, oncology nurses in New Zealand will have to be prepared to discuss SNS with their patients. This will demand familiarity with our own notions of what health and health care is and of processes to deal with questions that involve ethics. As Seedhouse (1998) points out, our ethics are informed by social values and these values are changing. The current emphasis in developed societies on convenience of food production and consumption has led to shifts in the social functions and values attached to food and eating (Ghosh, 2004).

A final role for oncology nurses caring for patients with advanced cancer is to skilfully and sensitively assist patients and families to deal with issues of comfort and impending death when it is clear that nutritional support of any kind is no longer of benefit.

Other contributions that oncology nurses can make to patients with advanced cancer with cancer cachexia syndrome are more far-reaching. Oncology nurses who hold speciality knowledge can ensure that non-oncology nurses who also care for patients with CCS have ready access to useful evidence-based guidelines for assessment and intervention. The development and creative sharing of guidelines for care should be priorities for national oncology nursing groups.

Nurses can also drive and participate in research around CCS and its management. August (2003) has identified five areas that need to be addressed. They are: informatics, genomics, nutraceuticals, cancer prevention and behavioural research. Examples of research in progress are: the use of a bedside food cart as an alternate food service for oncology and palliative care patients; comparison of Megestrol versus an Omega-3 fatty acid enriched nutritional supplement for the treatment of anorexia; exploration into the impact on self-concept and social interactions of involuntary weight loss in advanced cancer (Alberta Cancer Board); and research into taste alterations among oncology patients (Sherry, 2002).

And a final contribution that oncology nurses in developed nations make is to advocate for low-cost approaches to the global needs for symptom relief and palliative care (Singer & Bowman, 2002).

Cancer Cachexia Syndrome is a multidimensional and maladaptive response to malignancy that results in a variety of physical, psychological, social and existential concerns for patients with advanced cancer and their families. It is associated with poor outcomes and diminished quality of life. Oncology nurses are well placed to have positive influence. This requires current and ongoing knowledge around CCS and skilled interventions within a multi-disciplinary team. It requires familiarity with processes that guide assessment and decision making. It is critical that oncology nurses are conversant with the language of palliative care, with an ethical framework for decision making and with local and global trends and research. Communication is seen as the primary intervention in CCS management and for working constructively within the multidisciplinary team. Development of guidelines and sharing of recourses with non-oncology nurses becomes very important given that: cancer is becoming a disease of long duration; CCS affects most patients with advanced cancer; and that patients with CCS will seek assistance from a variety of health care sites. The assessment and management of Cancer Cachexia Syndrome will continue to be challenging but the need for an expert approach will not go away, nor will it confine itself to large, well-resourced tertiary centres.

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