Terminal Diagnosis and Prognosis to Affected Patients - Research Paper Example

PICO QUESTION The disclosure of terminal prognoses constitute a relatively standard practice in the Western healthcare tradition and system, but this is not always the case in other cultures. Although public preferences worldwide generally favor open disclosure, debate concerning whether the most compassionate psychological approach is to reveal, or to conceal, the presence of terminal illness is ongoing in the global community. Heated discussions among those having opposing viewpoints on disclosure issues are not uncommon and the passion surrounding such debates is fueled by the culturally embedded nature of the issue. In very broad terms, differences in disclosure preferences can be somewhat delineated according to Eastern or Western philosophical orientation (Field and Copp, 1999). A terminal prognosis is generally not disclosed in Asian countries where passivity and acquiescence to authority are important traditions. Conversely, the same prognosis would usually be approached openly in the US and the UK and many European countries where autonomy and free will are widely valued. This paper aims to explore, analyze and find a way to better communicate terminal diagnosis and related prognosis to affected patients and their families. Attitudes related to disclosure of terminal prognoses have shifted dramatically in the Western healthcare tradition, including the UK, over the past four decades (Chochinov et al, 2000). Research conducted in the 1950s and early 1960s revealed that only 10%-31% of physicians routinely disclosed a diagnosis of cancer to their patients (Fitch, 1994; Thomasma, 1994). This practice was due in large part to the widespread belief that such a diagnosis would create severe emotional disturbances that could potentially lead to suicidal acts (Thomasma, 1994). However by the late 1970s, nondisclosure practices had reversed (Fitch, 1994; Thomasma, 1994). This is evidenced by the 1979 survey results of Novack et al. which indicated that 98% of physician respondents disclosed the presence of terminal illness to their patients (qtd in Field and Copp, 1999). Comprehensive aspects of end of life medical care have been brought to public attention through the development of both health psychology and behavioral medicine. Each field has made a unique contribution to the understanding that physical health is impacted by numerous biological, psychological, and sociological elements. The upsurge of interest in these biopsychosocial interactions led to an increase of studies in many areas, including that of coping with, and adjusting to, life-threatening illness (Fitch, 1994). Findings generally indicate that given appropriate psychological and social support, disclosure of terminal prognoses does not lead to permanent loss of hope or untimely medical decline (Fitch, 1994), the reasons most often cited for the maintenance of nondisclosure practices. Moreover, attitudes toward truth-telling in terminal illness have also been significantly affected by the biopsychosocial approach to end of life care found in hospice organizations. The hospice movement arose out of a need for palliative care for those whose needs were unmet by a medical system whose primary focus was prolonging life at all costs (Chiu et al, 2000). Hospice care has been a welcome alternative to traditional end-of-life practices (Chiu et al, 2000). In their analysis of shift from diagnosis non-disclosure to disclosure, Fields and Copp (1990) indicate the following reasons: (1) improvements in therapeutic success; (2) changing societal attitudes; and (3) in the USA, legislation enforcing the patient's right to "informed consent" (p.461). From the critical perspective, no one wants to be the bearer of bad news and there is a great deal of tension surrounding the complex issues of whom to tell, what to tell, when to tell, and how to tell about the existence of a terminal prognosis (Fitch, 1994). Physicians frequently believe that it is their duty to have ready answers for every possible question, and they may feel inadequate when faced with situations for which there is no medical solution. Patients and their families often view the physician as the ultimate source of knowledge, information, and help, and the manner in which bad news is imparted can either solidify or shatter this relationship of trust. Reactions to such news can be unpredictable and due to psychological mechanisms can interfering with the communication process, some patients can deny their diagnosis or prognosis even when the information had been rightly communicated (Corli et al, 2009, p.354). It is little wonder that some physicians are uneasy with the disclosure of terminality given the enormous responsibility of performing this complex task well, and of doing so under vastly differing circumstances. This understandable discomfort is evidenced by the wide range of disclosure, and nondisclosure, practices that are routinely employed in the medical community (Corli et al, 2009). When a prognosis is terminal, both physicians and patients have differing levels of disclosure with which they are personally most comfortable (Field and Copp, 1999). Although the majority of physicians in the United States do inform their patients of terminal prognoses (Novack et al., 1979), this is not true of all. The amount and type of information communicated once a prognosis is clear can vary widely (Field and Copp, 1999). Novack et al. (1979) identified several patient-related factors which physicians commonly cite as influential in disclosure level decisions. These include the patient's age, intelligence, emotional stability, and expressed wishes. It is heartening to know that some physicians take these individual differences into account and try to temper their manner of disclosure accordingly. Back in 1993 Todd and Still in their study found that most physicians tended to maintain specific perspectives about whether or not patients should be told of their terminal condition and consequently, usually employed one of the several specific disclosure levels developed by Glaser and Strauss (qtd in Field and Copp, 1999) in a fairly consistent manner. A nondisclosure level (named closed awareness in Glaser and Strauss studies) assumes a condition under which the patient receives no accurate information about their illness. Physicians who practice nondisclosure usually state that they do so either to protect the patient from psychological harm, because they are uncertain about outcome or time remaining, or to protect themselves from becoming emotionally involved. Some allege that they simply assume that patients would not want to know the truth. However, from the critical perspective, feelings of fear or anxiety are likely to underlie the nondisclosure practices of many physicians. Maintaining a level of nondisclosure usually involves evading patient questions, actively denying the truth, or professing uncertainty as to the likely outcome of an illness. Some physicians employ these tactics throughout a patient's illness, others may utilize them only until they feel that the patient is emotionally prepared to receive the truth (Pfeifer et al., 1994). A partial disclosure level (named mutual pretense and suspicion awareness in Glaser and Strauss studies) assumes a condition under which the patient receives some accurate information, but in a way that does not fully convey the seriousness of the situation. The maintenance of a partial disclosure level usually involves practices such as offering false reassurances of future improvement or utilizing euphemisms as a substitute for clearly understandable terms. As can be the case with nondisclosure, when physical changes alert the patient to the probability of a serious condition, the use of partial disclosure practices may create confusion or distrust. However, some physicians believe that a partial disclosure level is helpful as a transitional device because it allows information to be conveyed in a manner which minimizes the initial emotional reaction. When used in this way, partial disclosure may be beneficial in gradually moving the patient through several progressive stages of awareness as a precursor to full disclosure. A full disclosure level (identified as open awareness by Glaser and Strauss) assumes a condition under which accurate and clearly understandable information is imparted. Physicians who fully disclose to their patients may convey the information either abruptly, or in stages. Abrupt disclosure may be emotionally harmful if a patient is not prepared for the prognosis. As explained by Fitch (1994) once a word like "cancer" or "terminal" is heard, a mental retreat is often enacted and thus true communication may not take place until the stark essence of the initial message has been absorbed. Similarly, when news of terminality is compressed into a short time period, the patient may remember very little of what has been said. Therefore, it is believed that for some patients it is best if the process can be divided into manageable stages so that self-perceptions gradually shift from well, to ill, to dying over a period of days or weeks. In terms of communicative pathways or physician's preferences to disclose a terminal diagnosis/prognosis, tradition dictates three disclosure circumstances: a physician may communicate the news to the patient only; to the patient in the presence of one or more loved ones; or to the loved one of a patient, with the expectation that they will then convey the news. Physicians almost always have some involvement with a patient's loved one(s), and many take this relationship into account when making decisions about the disclosure of terminal illness (Fitch, 1994). Research indicates that loved ones need clear, honest information concerning the medical status of the individual who is dying (Fitch, 1994) and that the most effective patient support is rendered by those who are well-informed. However, relaying information to anyone other than the patient may be problematic because of the potential for breach of confidentiality and violation of physician-patient trust. Despite the aforementioned benefits of open family communication, some patients may not welcome the involvement of loved ones. It is also possible that a situation may exist in which the needs and desires of loved ones run counter to those of the patient. There may be collusion to inappropriately maintain false hope, or to conceal important information (Faulkner & Regnard, 1994). Questions on should the physician tell the patient in isolation or should the patient be told in the presence of a loved one or should the physician tell a loved one so that they might convey the prognosis to the patient remain controversial. Unfortunately, as is the case with level of disclosure, it is likely that some physicians avoid complex decisions about disclosure pathways by adhering to one particular strategy with which they are personally comfortable. As contemporary medical evidence based literature suggests, communication of terminal diagnosis or prognosis to patients should occur in the vast majority of cases. According to Pery and Wein (2008) "good death" occurs when the subjective (patient) and the objective (society, family) appear to blend seamlessly - before, during, and afterward (p.400). In addition, Chochinov et al (2000) emphasizes that what patients are told, how they are told t and the manner in which they are able to integrate and cope with such information remains an important issue for clinicians attending to patients facing imminent death (p.505). The statement by Chochinov et al (2000) evidently identifies the problem of terminal patients' quality of life after they became aware of their diagnosis or prognosis. Addressing similar problem, Field and Copp (1999) provided a comparative analysis of nondisclosure and full disclosure of diagnosis and how it impacts patients' quality of life. For instance, according to Field and Copp (1999) only full disclosure of patient's diagnosis can lead to (1) better information and communication from medical personnel, including nurses, (2) patient's participation in decisions about care, (3) psychological support from family members, (4) palliative care, (5) self-esteem, (6) autonomy and decreased anxiety, (7) preparation for death and acceptance. For clinicians full disclosure approach guarantees more effective and efficient communication with patients and their families, shared decision making, and ability to stop inappropriate treatments. REFERENCES Chochinov H.M, Tataryn D., Wilson K., Enns M., Lander S. (2008). Prognostic Awareness and the Terminally Ill. Psychosomatics; Nov/Dec; 41, 6, pp.500-505 Corli O., Apolone G., C.E.R.P. (2009). Illness awareness in terminal cancer patients: an Italian study. Palliative Medicine, 23, pp.354-359 Chiu T., Hu W., Cheng S., Chen C. (2000). Ethical dilemmas in palliative care: A study in Taiwan. Journal of Medical Ethics. London, 28(5), pp. 353-358 Field D., Copp G. (1999). Communication and awareness about dying in the 1990s. Palliative Medicine, 13, pp.459-468 Fitch M. I. (1994). How much should I say to whom Journal of Palliative Care, 10(3), pp.90-100. Novack D., Plumer R., Smith R. L., Ochitill H., Morrow, G., & Bennett J. (1979). Changes in physicians' attitudes toward telling the cancer patient. Journal of the American Medical Association, 241(9), pp.897-900. Pfeifer M. P., Sidorov J. E. , Smith A. C, Boero J. F., Evans A. T., & Settle M. B. (1994). The discussion of end of life medical care by primary care patients and physicians: A multicenter study using structured qualitative interviews. The EOL Study Group. Journal of General Internal Medicine, 9(21), pp. 82-88. Pery S., Wein S. (2008). The dying patient: The right to know versus the duty to be aware. Palliative and Supportive Care, 6, pp. 397-401 Thomasma D. C. (1994). Telling the truth to patients: A clinical ethics exploration. Cambridge Quarterly Healthcare Ethics, 3(3), pp.375-382. Todd C., & Still A. (1993). General practitioners' strategies and tactics of - communication with the terminally ill. Family Practice, 10(3), pp.268-276. Read More