Week 3: 1/25-1/31-Ethics in Policy

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).


Picture 1: Palliative care can make the difference between suffering and comfort

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.

Picture 2: Ethics often complicate decision making and health policy but are necessary to preserve patient integrity

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.

Picture credits:

  1. http://cdn.aarp.net/content/dam/aarp/health/doctors_hospitals/2011_06/200-bed-of-nails-pain-management.imgcache.rev1306444919975.web.jpg
  2. http://www.rsrevision.com/images/calvin_ethics.gif
  3. 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.



Palliative care is a necessary and often forgotten aspect of care that can make a significant difference in the experience an individual faces when managing health conditions. Palliative care focuses on symptom management in the midst of a significant disease, and aims to achieve the ultimate goal of optimum quality of life. These symptoms can include pain, fatigue, appetite changes, sleep disturbances, nausea, constipation, shortness of breath and depression (Center to Advance Palliative Care, 2012). While this supplemental care is imperative for physical and psychological outcomes, palliative specific training or education is often lacking or missing from the curriculum of health care programs. One of the major barriers to palliative care in serious conditions, such as dementia, is the lack of provider knowledge. In order to achieve the optimum quality of life for patients struggling with serious diseases, health care providers need to have a foundation of knowledge regarding this type of care so it can applied throughout their career.

This topic stems from my doctoral applied project which concentrates on assessing pain in persons with advanced dementia. The project includes an extensive literature review that highlighted the lack of education in this area and the potential consequences of under-managed symptoms. Based on the findings from the evidence, I implemented educational sessions with nurse practitioners working in long term care facilities. Prior to the intervention, many of the nurse practitioners acknowledged that they were not given dementia specific training or education on pain assessment in this population. Not only did the project improve provider knowledge, but it increased the likelihood of use and dissemination of information to staff working at long-term care facilities. While these approaches to education are successful, the ideal approach is to include this education prior to practice where the knowledge can be standardized, presented by experts, and spread to a larger group of individuals.

One legislation that addresses this issue is H.R. 3119: Palliative Care and Hospice Education and Training Act. This bill seeks to expand the Public Health Service Act to include more palliative care experts as faculty in health care programs  (GovTrack, 2016). It serves the ultimate goal of addressing the lack of palliative care knowledge included in health care programs. This bill was recently introduced and referred to committee on July 21, 2015. The bill reflects the importance of building a solid foundation of knowledge in order to maximize patient care. Empowerment through education is fundamental to achieve the safest and most effective palliative care for individuals who are in state of suffering.

“If you learn to listen for clues as to how I feel, instead of what I say, you will be able to understand me much better” -Mara Botonis


GovTrack. (2016). H.R. 3119: Palliative care and hospice education and training act. Retrieved from https://www.govtrack.us/congress/bills/114/hr3119

Center to Advance Palliative Care. (2012). What is palliative care? Retrieved from https://getpalliativecare.org/whatis/