Do Terminally Ill Patients Receive Sufficient Information From The Health Care Providers Regarding The End Of Life Decisions?
Dying people and their families are often faced with the challenge of making decisions including several choices that may be spiritual, legal, medical or psychosocial in nature. For instance, the dying individuals and their respective families are supposed to make decisions regarding the setting of treatment, whether home or institutionalized, and the form of caregiver help they require. In addition, dying individuals must make decisions regarding the desired level of the involvement of the family with respect to decision making and care giving. Terminally ill patients also undertake legal decisions in relation to their wills, powers of their attorneys, and any advanced directives (Spettell, et al., 2009). There are various end-of-life decisions and tasks that terminally ill patients make as they advance towards the end of their lives. All end of life decisions including medical decisions comprise of complex psychosocial elements, outcomes and ramifications that are likely to impose a considerable effect on standards of suffering, living and dying. Nevertheless, terminally ill patients and caregivers face a significant challenge when making medical end-of-life decisions. These decisions should take into consideration the beliefs and values of the persons dying and their respective families, and the terms of relief from suffering. However, in most cases, the medical care system may have core values that are different from the values of the dying individual (Steinhauser, Alexander, Byock, George, & Tulsky, 2009). This denotes the significance of healthcare providers offering sufficient information to terminally ill patients regarding end-of-life decisions. This paper reviews existing literature on whether terminally ill patients receive adequate information from healthcare providers regarding end-of-life decisions.
Trotta (2007) argues that communication is a vital element of palliative care in the context of the nursing home. According to Trotta (2007), palliative care should place emphasis on quality of death instead of quality of life. With this respect, quality of death places a lot of emphasis on the transitional experience and maintaining identity during dying. The theoretical groundwork for palliative care rests on two principles. The first principle is that death is not instantaneous, wherein palliation can be missed if death is not perceived as a continuous experience. The second principle entails maintaining the identity of the dying patient, which ensures the quality of death.
Emanuel & Scandrett (2010) affirms the complexity of the decision-making process, especially for the case of terminally ill patients. Furthermore, there is the possibility of failing to resolve part of those challenges because of the human inability to anticipate the future accurately and the human tendency to alter the established preferences in the dawn of reality. Emanuel & Scandrett (2010) discussed various approaches that may be helpful in relation to end-of-life decisions for terminally ill patients. The authors advocate for regular use of discussions regarding the goals of care and documentation with terminally ill patients with a poor prognosis. Emanuel and Scandrett (2010) affirm that quality palliative care should strive to attempt to coincide with the goals of terminally ill patients and care. It is essential to take into account the fact that planning for future scenarios is necessary although difficult. There is the need for physicians to perform research on the thresholds of dying patients when changing from curative to palliative care; this is essential to attain effective elicitation and documentation when planning for advance care. In addition, physicians must research on the course of altered preferences in the event of any illness. The second approach advocated by Emanuel & Scandrett (2010) is the use of documentation and community preferences; this is helpful for improving the decision making domain because terminally ill patients can assess what others opted do in an analogous situation. Emanuel & Scandrett (2010) point out the challenge in attaining quality dying is the death-denying culture and the incapability of dying persons to assume the dying role. There is the need to enhance the awareness of the tasks associated with the dying role. Emanuel & Scandrett (2010) also advocate for other certain interventions to facilitate end-of-life decision-making such as advance care planning and dignity therapy.
Several empirical studies have been conducted to evaluate the perceptions of dying individuals regarding the level of physician communication with them. Biola et al. (2007) undertook a retrospective study to evaluate the family perceptions about communication among family care givers and physicians of people who were placed in long-term care during their last month before death and to recognize any existing relationships between the characteristics of long-term care resident, family caregiver and physician care. According to the findings by Biola et al. (2007), 39.9 percent of participants reported that they were not informed, 49.8 percent reported that they were given information that they expected, and 43.1 percent reported that they understood the physician. The findings also revealed that family caregivers were more likely to have used face to face interactions with physicians and had an understanding that death was forthcoming. Biola et al. (2007) concluded that there is the need to enhance communication between physicians and families of long term care residents using face-to-face interactions between family caregivers and physicians, clarification of prognosis of the dying patient, and conveying information regarding changes in the health status in a timely manner, particularly when the patient is in the last days of his or her death.
In a study by Glass & Nahapetyan (2008) to assess informal family communication regarding end-of-life preparation and preferences (EOLPP), it was revealed that Americans have the tendency of denying death; as a result, individuals in the verge of dying are less likely to discuss matters involving EOLPP. The study revealed that only 18 percent of Americans have written living wills. In addition, dying persons have a tendency of trusting and preferring others people to make end-of-life decisions in behalf of them. Glass & Nahapetyan (2008) suggested that ELOPP discussions were instrumental in easing the burden of decision-making for the family. An inference from this observation is that the death denying culture and unwillingness to discuss ELOPP among dying persons can be attributed to lack of sufficient information from healthcare providers about end-of-life decisions. The inability of healthcare providers to offer terminally ill patients with sufficient information is evident through the problematic nature of surrogate decisions, wherein the prevalence of errors in surrogate decisions was about 30%. In relation to the role of healthcare institutions as the main setting for death and the revelation that only 22% of dying patients have time to plan for a forthcoming demise, it is paradoxical that families are the main players having least knowledge in the hospital setting.
At present, terminally ill patients in the United States have the mandate of exercising control in relation to their healthcare and deciding on the course of treatment regardless of their physical and cognitive capabilities. During such scenarios, healthcare providers have the legal obligation of enacting terms and conditions of the will of the dying patient and undertake consultations with surrogate decision-makers who have the legal capacity of doing so. However, in reality, most of these provisions are yet to be implemented. Moorman (2011) undertook a study to assess the fractions of dying patients preferring autonomous or entrust medical decision-making during end-of-life situations, and evaluate the relationships existing between individual and universal beliefs, and planning behaviors involving end-of-life decision making preferences. The study reported that about 80% of participants expressed intentions of independent decision making. Independent decision making was strongly associated with placing more value on the quality of life than on the length of life, and reduced avoidance about thoughts of dying. The participants concerned about placing the burden on caregivers expressed intent of making independent decisions. An inference from the findings by Moorman (2011) reveals that terminally ill patients alluded to individual and affiliative beliefs were primary reasons for autonomous or delegated decision making rather than the absence of autonomy. Independent end-of-life decision making implies that healthcare providers are playing a minimal role when terminally ill patients make end-of-life decisions.
According to Parker et al. (2007), evidence based recommendations about discussions involving death, life expectancy and probable future symptoms of terminally ill patients and their respective families are deficient. In a study to evaluate prognostic and end-of-life communication with terminally ill patients and healthcare providers, Parker et al. (2007) found out that caregivers and patients had high amounts of information required during all phases of illness, the potential future symptoms, options for critical treatment and life expectancy. The information needs of patients and caregivers revealed a divergent trend in the course of illness progression, wherein caregivers were requiring more information whereas patients were requiring less information. In addition, caregivers and patients have a preference for health professionals with honesty and empathy, and explained the information requirements and understanding levels of the individual patients. Parker et al. (2007) concluded that caregivers and patients need discussions regarding end-of-life decision-making during the prognosis of progressive and advanced terminal illness.
According to Powers, Norton, Schmitt, Quill & Metzger (2011), the efficacy of and distinctiveness of end-of-life services and palliative care is most evident when preferences and goals of patients are aligned with the need to regain and sustain a manageable lifestyle when suffering from terminally ill. The integration of palliative care and hospice care philosophies evident in palliative care clinicians are mostly synergetic and involve the use of supportive services offered to terminally ill patients. Powers et al. (2011) affirmed the need to extend beyond end-of-life care and palliative care, and move away from the view that end-of-life refers to a time prior to death. Data from the study pointed out that high levels of patient and family satisfaction is accrued from the communication between the members of palliative team care and the patient. Palliative care team members are placing a lot of emphasis on aiding terminally ill patients and their respective families through the articulation of goals of care. Similar findings were reported by Goodman et al. (2011), who undertook a study to examine the experiences of elderly people in care homes with the primary objective of understanding how residing in care homes shape the views of residents, their experiences and anticipations associated with end-of-life symptom relief and care.
When assessing the level of communication between physicians and terminally ill patients about making end-of-life decisions, Thurston, Wilson & Hewitz (2011) carried a descriptive-comparative study to assess the existing end-of-life needs and healthcare practices. The findings from the study revealed that current hospitals recognized impending death, when compared with hospital context during 1990s; this is evident that the use of life-sustaining technologies during times of demise. An inference from these findings is that physician communication with terminally ill patients has increased over time, implying that dying patients in the present hospital contexts have access to more information than previous decades.
A synthesis of the above literature reveals that the effectiveness of palliative care in guaranteeing the quality of dying and satisfaction of terminally ill patients is dependent on the level of physician communication in relation to making end-of-life decisions. All empirical studies discussed in the section above point the need for healthcare providers to offer sufficient information about the end-of-life decision making. With regard to making end-of-life decisions by terminally ill patients, it is evident that most of them prefer autonomous decision making influenced by individual and affiliative beliefs and values.
Biola, H., Sloane, P., Williams, C., Daaleman, T., Williams, S., & Zimmerman, S. (2007). Physician communication with family caregivers of long-term care residents at the end of life. Journal of the American Geriatric Society , 55 (6), 846-856. doi: 10.1111/j.1532 5415.2007.01179.x
Emanuel, L., & Scandrett, K. (2010). Decisions at the end of life: Have we come of age? BMC Medicine , 8 (1), 57. doi: 10.1136/bmj.38965.626250.55
Glass, A., & Nahapetyan, L. (2008). Discussions by elders and adult children about end-of-life preparation and preferences. Preventing Chronic Disease , 5 (1), 1-8. doi :10.1186/1741 7015-8-57
Goodman, C., Mathie, E., Cowe, M., Mendoza, A., Westwood, D., & Munday, D. (2011). Talking about living and dying with the oldest old: Public involvement in a study on end of life care in care homes. BMC Palliative Care. doi:10.1186/1472-684X-10-20
Moorman, S. (2011). Older adults’ preferences for independent or delegated end-of-life medical decision-making. Journal Aging Health , 23 (1), 135-137. doi: Â 10.1177/0898264310385114
Parker, S. C., Hancock, K., Walder, S., Butow, P., Carrick, S., Currow, D., et al. (2007). A systematic review of prognostic/end-of-life communication with adults in the advanced stages of a life-limiting illness: Patient/caregiver preferences for the content, style, and timing of information. Journal of Pain and Symptom Management , 34 (1), 81-93.
Powers, B., Norton, S., Schmitt, M., Quill, T., & Metzger, M. (2011). Meaning and practice of palliative care for hospitalized older adults with life limiting illnesses. Journal of Aging Research. doi:10.4061/2011/406164
Spettell, C., Rawlins, W., Krakauer, R., Fernandes, J., Breton, M., Gowdy, W., et al. (2009). A comprehensive case management program to improve palliative care. J Palliat Med , 827-832.
Steinhauser, K., Alexander, S., Byock, I., George, L., & Tulsky, J. (2009). Seriously ill patients’ discussions of preparation and life completion: an intervention to assist with transitions at the end of life. Palliat Support Care , 393-404.
Thurston, A., Wilson, D., & Hewitz, J. (2011). Current end- of-life care needs and care practices in acute care hospitals. Nursing Research and Practice. doi:10.1155/2011/869302
Trotta, R. L. (2007). Quality of death: A dimensional analysis of palliative care in the nursing home. Retrieved July 13, 2012, from http://ebookbrowse.com/trotta-a-dimensional analysis-of-palliative-care-in-the-nursing-home-pdf-d43507618
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