Ethics not only drive the care that patients receive, but they dictate the actions and changes that can be made from a legislative perspective.
The four guiding principles of medical ethics are autonomy, justice, beneficence and nonmaleficence (Longest, 2016).
These principles translate into health and health policy by recognizing that American citizens have the right to make their own health decisions and to fair and equitable care (Longest, 2016). Furthermore, health care workers and policy makers need to emphasize the importance of doing what is best for patients and avoiding harm (Longest). Both the implementation and application of new legislation or policy have ethical considerations and potential consequences (Longest). Policy makers must always consider the ethics of policies and potential outcomes, both positive and negative. Furthermore, the individuals in both the public and private sectors who play a role in the influence and decision making for policies are subject to expectations and repercussions associated with ethical dilemmas (Longest).
H.R. 3119 is not exempt from these principles and an examination of the bill’s basic concepts reflects its ethical grounding. Palliative care and hospice care are centered on the concept of achieving quality of remaining life and a “good death” (Mohanti, 2009). Beneficence and nonmaleficence relate directly to H.R. 3119 as the bill seeks to improve the quality of palliative care by increasing and promoting education and research in this area. The ultimate goal of the bill is to achieve better palliative care and quality of life for those suffering through a burdening illness or disease. Palliative and hospice care serve as an option for individuals entering the final stages of their lives by preserving and promoting autonomy in medical decision making (Callahan and Lawler, 2012). That being said, autonomous decisions are only as good as the ear that will hear them. Mohanti (2009) recognizes that the cornerstone of ethical end of life and palliative care is related to communication between family, patients, and the health care team. Providing patients and families with the correct information about options and applying the concept of autonomy leads to a better premise of care that is patient and comfort driven. From a provider perspective, the ability to provide this experience for patients is dependent on background knowledge. For example, pain is one of the most predominant symptoms confronted by palliative care, affecting 52-77% of patients with a terminal illness (Jubb, 2002). However, as Fishman (2007) identifies, pain is often undermanaged in this population. Mohanti identifies that one of the influencing factors to this problem is a lack of provider knowledge and skills for pain assessment. This concept was recognized throughout my research and project implementation. During my implementation phase, I found that the majority of nurse practitioners surveyed were not using a standardized pain assessment tool and were not given dementia specific training. In order to properly identify and manage the burdening symptoms of terminal illnesses, health care workers need to first establish a foundation of information.
Another important note to consider is the nature of research for the palliative care population because the bill seeks to improve funding for research. The ethical competency of palliative care research often becomes murky because of the vulnerability of this population (Jubb, 2002). One struggle that I encountered when conducting a literature review and evidence synthesis for my project was the lack of articles that ranked higher on the evidence hierarchy, such as randomized control trials. When it comes to researching palliative care, the ethical concern centers on withholding a symptom management from a group who is in distress. Jubb (2002) reflects this issue by discussing the impracticality of higher ranked research in palliative care and negating the concept that no research is necessary. Jubb discusses the importance of conducting qualitative and observational research to achieve evidence based care that is based on the best interest of patients. In the age of evidence-based practice, why would palliative care be any exception to the rule? From an ethical perspective, funding and supporting research in this area would logically improve the beneficence sought after for our patients.
- Header photo: http://www.entnet.org/sites/default/files/styles/panopoly_image_original/public/Ethics2.jpg?itok=Rl8tSBhX
Callahan, D. & Lawler, P. A. (2012). Ethics and health care: Rethinking end-of-life care: Discussion document. Retrieved from http://thf_media.s3.amazonaws.com/2012/pdf/CPI_DP_04.pdf
Fishman, S. M. (2007). Recognizing pain management as a human right: A first step. Anesthesia and Analgesia, 105(1), 8-9.
Jubb, A. M. (2002). Palliative care research: Trading ethics for an evidence base. Journal of Medical Ethics, 28, 342-346.
Longest, B. B. (2016). Health policymaking in the United States (6th ed.). Chicago, IL: Health Administration Press
Mohanti, B. K. (2009). Ethics in palliative care. Indian Journal of Palliative Care, 15(2), 89-92.