End of Life
Name:
Institutional affiliations:
Introduction
End of life (EOL) care is the care given to terminally ill patients once they reach a point of rapid decline, which is typically in the last weeks or a few months before death. A terminally ill patient is one whose life expectancy is short and whose treatment has moved from a curative regiment to supportive care (Hui et al., 2014). The goal of EOL care is to maintain the quality of life of the patient and their family through the management of pain, physical, spiritual and psychosocial morbidities. It, therefore, supports the sanctity of life and approaches death as a normal process by neither hastening nor postponing it. Before the 20th century, EOL care was primarily provided by the family of the affected patient with the help of visiting healthcare workers (Hui et al., 2014). Today, the rise of the modern hospital system has resulted in the shift from home-based care to the hospital. However, despite development in medical technology, the change has resulted in hospital care having inadequate dignity and compassion for patients. After noticing the depressive conditions under which bedridden patients in London experienced, Dr Cecily Saunders began the modern EOL care movement by founding the first hospice program in Saint Christopher’s in 1967. In 1971, Florence Wald established the first home-based hospice program in the United States.
Delivery of End-Of-Life Care
EOL care can occur in different settings, for instance, at home, in the hospital palliative and intensive care units, hospice centres and facilities for long-term care (Mistry et al., 2015). Each of these settings is financed and organized to provide care differently, depending on its professional complement, service mandate and the specific care needs of the population being served. Hence, the scope of EOL care given in each setting is different.
Globally, there is an increasing interest in the way in which care is provided to patients at the end of life. The subject of what constitutes a “good death” has received little unanimity, and there is discord on the suitable responses to the issue of providing forms of EOL care that are sustainable and culturally relevant (Zaman et al., 2017). The current revival of debates about EOL care is characterized by a broad interest in EOL care as shown by “The Conversation Project”. The project co-founded by Ellen Goodman is aimed at helping people decide what they want for their EOL care. Fulfilling a patient’s wishes involves identifying what they wish to through transparent communication, providing education on the available options and realistic expectations and letting patients to have a say in decision making. Therefore, quality EOL care does not only involve alleviating symptoms, but it also consists of supporting the patients to die in a manner that they desire.
Ethical Issues Arising from the Provision of EOL Care
Supporting a patient to die in their preferred way, raises the controversial issue of physician-assisted suicide, which involves granting a patient’s wish to die at their own preferred time with peace and dignity. For many years, the American Medical Association (AMA) has been a staunch opponent of physician-assisted suicide. It is understandable to think that death is preferable for a patient suffering from a debilitating illness. AMA, however, argues that the American Supreme Court should understand and honour an ethical code which states that doctors should never consciously harm a patient(Lagay, 2003)). AMA encourages doctors to focus on alleviating suffering via effective pain management rather than assisting a patient in ending their life. Concern over EOL care preferences which range from the passage of the Patient Self Determination act to introduction of benefit from Medicare hospice has grown. Although both enactments have good intentions, they prevent patients, physicians and families from having honest conversations about unimaginable things such as failing a second-line treatment, having a terminal disease or not the unavailability of a standard treatment option.
Racial Disparity in EOL Care
According to Luth & Prigerson (2018), myriads of research mainly conducted by the American Medical Association exhibit an existing disparity on the end of life care delivery among the whites and Africa American patients. Surveys conducted on family members of these individuals indicate an extensive measure of sadness prevalent at the end of life. Reports from these surveys suggest that at least 34% of white patients receiving advanced care planning were less likely to have unmanaged sadness (Luth & Prigerson, 2018). However, the same statistic report shows that 160% of African American patients under advanced care planning exemplified more cases of unmanaged sadness and anxiety. In attempts to override such situations, the AMA argues that these variations are as a result of the level of aggressive care desired by each patient (Graphic, 2014).
Further, Graphic (2014) indicates that these explanations reflect that African American patients may not be receiving the end-of-life care apparent with their values, and this may be a potential aspect resulting in sadness. It is worth noting that other factors that may necessitate sadness on these patients are insurance rules or cultural differences which the physicians and caregivers need to be aware of (Luth & Prigerson, 2018). Among the recommendations laid to counter this disparity is increased diversification of patient care where physicians are advised to handle more patients (Graphic, 2014). Likewise, palliative care teams need to observe culturally bound ethics for various patients. More importantly, the healthcare professionals need to expand awareness on racial disparities that may lead to inequalities which yield sadness (Luth & Prigerson, 2018). More so, the African American families and patients need to be informed on the availability of palliative care services that may assist in overcoming sadness and anxiety during the last periods of life. According to the AMA, such services have proved to help relieve worries while extending the healthspan of such patients.
Conclusion
Death is an unavoidable part of life and maybe an eventuality in the case of a progressive chronic disease such as AIDS and cancer. When medical treatment becomes ineffective in restoring a patient’s health, provision of quality and effective EOL care becomes a responsibility of the physician. Undoubtedly, access to EOL care is every patients’ right, and anyone with debilitating illness has the right to live a life that is free from any distress and pain be it physical, psychosocial or spiritual. Also, they have a right to living a dignified life that includes the death process. At the same time, healthcare providers need to be aware of the existing racial disparities at the end of life care such as sadness and anxieties and the available mechanisms to curtail such disparities in the healthcare system. In this light, they ought to understand the relevance of a prevalent diversified healthcare system that meets the needs of all the Americans regardless of racial backgrounds.
References
Graphic, P. C. (2014). Dying in America: Improving quality and honouring individual preferences near the end of life.
Hui, D., Kim, S. H., Roquemore, J., Dev, R., Chisholm, G., & Bruera, E. (2014). Impact of timing and setting of palliative care referral on quality of end‐of‐life care in cancer patients. Cancer, 120(11), 1743-1749.
Lagay, F. (2003). Physician-Assisted Suicide; The Law and Professional Ethics. AMA Journal of Ethics.
Luth, E. A., & Prigerson, H. G. (2018). Unintended harm? Race differences in the relationship between advance care planning and psychological distress at the end of life. Journal of Pain and symptom management, 56(5), 752-759.
Mistry, B., Bainbridge, D., Bryant, D., Toyofuku, S. T., & Seow, H. (2015). What matters most for end-of-life care? Perspectives from community-based palliative care providers and administrators. BMJ Open, 5(6), e007492.
Zaman, S., Inbadas, H., Whitelaw, A., & Clark, D. (2017). Common or multiple futures for end of life care around the world? Ideas from the ‘waiting room of history’. Social Science & Medicine, 172, 72-79.