The Importance of Communication in Palliative Care

Psychological and psychiatric morbidity is a common problem for cancer patients as well as their carers, relatives and friends, and depression has been found to be especially common for those people with advanced cancer. It has been suggested that 25%-50% of patients suffer from psychological distress (Fallowfield et al. 2001) and it has been further found that the risk of experiencing depression is increased when the disease is advanced (Breitbart 1995; Fallowfield et al. 2001), or when functional impairment or symptoms are greater (Hopwood and Stephens 2000). A systematic review by Hotopf et al. (2002) found that depression is a very common problem in palliative care patients, but that many of the studies in this area were lacking, and "based on small samples of patients with very high non-participation rates". Diagnosis and treatment of psychological distress and disturbance, however, is based on communication.

Indeed, one aspect thought to help patient and family distress includes effective and open communication with health professionals. Communication has been said to be important for patient understanding of their disease, outcomes, patient behaviour, ability to cope, both physical and psychological health, as well as patient satisfaction with care, and compliance with treatment.

Research have found that many patients want as much detailed information as possible about their illness and treatment, and want to be part of the decision-making process (Kirk et al. 2004). In a study by Sapir et al. (2000) of 103 cancer patients, they found that 92% would want to know all the information. They also found that the oncologist was the staff member most often sought out for both information and support. Further more, Kirk et al. (2004) in 72 participants registered with palliative care in Canada and Australia found that all patients wanted information about their illness, and wanted it fully shared with relatives. Moody (2003) also describes the great need of cancer patients for information, and for the appropriate information at the appropriate time. The literature demonstrates that good information can help patients in decision-making, and with psychological and physical well-being (Greenwood 2002).

Although many have reported the importance of communication, the literature has also shown that patients do not receive the appropriate information (Kutner et al. 1999; Ong et al. 1995) and/or that the information given is poor (Lo and Snyder 1999). However, a study by Sapir et al. (2000) found that 85% of their participants were satisfied with the clarity of the information they received and 90% thought it was given to them sensitively. Aspects of social desirability which may influence these results, have to be taken into account for interpretation of such studies. Although patients may be well informed about diagnosis, treatment, and prognosis, there is less coverage of psychological and well-being issues with the patient (Ford et al. 1996).

It has been said that the withholding of information from patients regarding their illness and treatment is mostly due to doctor "intuition", which has also been said to be incorrect in most cases (Fallowfield 1997; Husebo 1998). Whereas in previous years withholding information to protect patients, and not to diminish hope, was common practice, more recently truth telling has become the more common practice (Neko-laichuk and Bruera 1998). Although a move to a more open awareness from a more closed awareness has been identified over the years, Field and Copp (1999) additionally describe a further move in the 1990s to a more "conditional awareness", particularly in palliative care where they say health professionals are more likely to give "graduated dosages of truth" (Field and Copp 1999).

It is believed that many physicians/healthcare professionals limit the information they give to their patients and family in order to try and spare them what might be bad news; however, research has demonstrated that this can actually cause greater difficulties for individuals by not allowing them to plan for the future (Fallowfield et al. 2002).

Further suggestions as to why communication between doctor and patient (health professionals and patients) is less than optimal include lack of time and differences between knowledge, values, expectations, and goals (Cantwell and Ramirez 1997; Friedrichsen et al. 2000). In most of Northern Europe and North America patients are now regularly informed about their cancer diagnosis and prognosis (to the best of the physician's capability), but in countries such as Eastern Europe, Spain, and South America such issues are rarely discussed with patients and their families, demonstrating possible cultural differences between communication needs and/or attitudes (Bruera et al. 2000). Bruera and co-workers (2000) did find a significant regional difference in patterns of practice regarding communication at the end of life, emphasising again the need for individualised communication strategies.

Communication is said to be even more difficult and more important for those with a terminal illness or when care changes from curative to palliative (Friedrichsen et al. 2000; Kutner et al. 1999). Open communication is an important aspect of death and dying and of a "good death", and it is thought to contribute to effective symptom control and end of life planning (Edmonds and Rogers 2003; Field and Copp 1999).

However, research suggests that these needs are not being met, and that many physicians and nurses do not discuss care with patients at the end of life, and even when they do they may not talk about such issues as concerns or fears (Addington-Hall et al. 1995; Edmonds and Rogers 2003; Lo and Snyder 1999). Cantwell and Ramirez (1997) found that only 21% of their participants (junior house officers) asked dying patients about any emotional concerns. Nurses also focus on physical care, avoiding open communication about prognosis and other psychological and spiritual issues (Edmonds and Rogers 2003; Rogers et al. 2000).

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