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

References

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.

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4 thoughts on “Week 3: 1/25-1/31-Ethics in Policy”

  1. First I have to say that I love this topic! I worked as a hospice nurse and it was such an eye opening experience. Our training was incredibly comprehensive and it covered many of the issues you brought up such as “the good death” and pain management. I was thankful for the training program as well as the support of our ethics committee and my fellow nurses and staff when ethical dilemmas came up as they often did. The concept of palliative sedation was my real introduction to ethics in nursing and I struggled with it. I saw that in the cases it was used it was absolutely a humane intervention but I could also look at it through a different perspective as a form of euthanasia. You brought up such a great point with discussing the vulnerability of this population as well, much like with my specialty of pediatrics, funding and research are issues. I almost felt like we were “winging it” in some situations and utilizing all of our resources and the wishes of the family to provide care on a case-by-case basis. I am looking forward to following your blog and reading more about this important and sensitive topic.

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  2. I wholeheartedly agree with the need to increase education for healthcare providers regarding communication skills when discussing palliative care and symptom management.

    Working in hospice care, I encounter families who carry a heavy burden of guilt from a previous death- sometimes many years past. This weight of remorse may be expressed –“why does he need morphine, it’s going to kill him.” Some families are so focused on the pain medicine, and believing it is causing death, rather than on the person and the disease(s) that are actually leading to death. This not only presents a barrier to effective pain management (I have talked with families of persons with advanced metastatic cancer who are still hesitant to maximize pain control, even when the patient had clearly expressed a desire for aggressive comfort care) but also can take the focus away from non-pharmacological & healing aspects of palliative care, such as presence, music, spiritual and religious connections, etc. These approaches support the holistic nature of palliative and hospice care, assisting to promote a “good death” for both the patient and their loved ones.

    A primary way to prevent this misunderstanding is clear communication from healthcare providers. We need to have a united and consistent voice to alleviate confusion. Hopefully HR 3119 is only a beginning to the change that needs to occur. We have a responsibility to our patients facing serious illness—to communicate compassionately and effectively in order to determine their goals.

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    1. The need for education on both the part of providers and patients/families is great. Palliative/hospice care services can provide a wonderful service at a time of significant need, yet I think that it goes underutilized in part because of misunderstandings on both the patient side and providers side. Ethically speaking in order to do justice, one must understand the topic. I also agree that ethically sound research is needed to help identify best practice. One study examined the barriers to high-quality palliative care research [1]. Five barriers to research were identified and included funding, lack of trained workforce, incapability of institutions, challenging subject matter, and patient/professional uncertainty/discomfort [1]. I think one of the biggest challenges to overcome would be changing the misunderstandings and comfort level of both patients/families and providers.

      [1] Chen, E., Riffin, C., Reid, C., Adelman, R., Warmington, M., Mehta, S., & Pillemar, K. (2014). Why is high-quality research in palliative care so hard? Barriers to improved research from a survey of palliative care researchers. Journal of Palliative Medicine, 17(7), 782-787. doi: 10.1089/jpm.2013.0589

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  3. I was a hospice case manager for five years and pain management was one of our top priorities along with educating the patients, families, and medical personnel on how and why we do what we do and why at times we were so aggressive in treatment. In order to be on hospice a patient must have a diagnosis with no more than 6 months to live if the disease follows its normal course. To often the decision to go on hospice care came late in the disease process and we only had days with our patients and were never able to do a good job with managing their symptoms. Other times the patients were referred to us and accepted the referral in a more timely manner and it was not completely unusual for us to get the patient’s symptoms under such control that they no longer qualified for our services and we would discharge them. These patients eventually would come back on our service as the disease process progressed. As long as they were diagnosed with only 6 months or less to live under normal circumstances they could remain on our service, sometimes the re-certifications enabled them to be with us for a year or more.

    We felt it was part of our ethical responsibility as a patient advocate to educate physicians, health care workers, families, patients and the public about what hospice does. We sponsored conferences within our rural area to educate physicians and nurse practitioners on symptom, and pain management along with brown bag lunch type discussions. Once when a patient’s physician was out of town I needed a new prescription for an increase in pain medication and the physician covering was not familiar with our sliding scale pain medication orders. This gave me the opportunity to do impromptu education and the physician then felt comfortable signing the order. The more we educated the public the more patients we had that signed up for our services much earlier and the fewer patients we had sign up within days of death, to include a decrease in the number of patients who passed within 24 hours of admission due to lack of education earlier in the disease process.

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