Introduction

In today’s ever changing world it is essential that advanced practice nurses are equipped with legal and ethical reasoning skills. Healthcare is only becoming more complex and ethical issues often do not have a textbook right or wrong solution, especially when it comes to end of life care decisions. When a situation involves the terminally ill in severe and intractable pain, the issue can be exponentially more challenging. As nurses, it can be difficult balancing our obligation to facilitate relief of suffering with our responsibility to do no harm (American Nurses Association, 2001). In addition, health care policy is rapidly changing and with it brings new regulations that impact nursing practice. Klaassen, Smith, & Witt (2011) explain that legal actions against nurses have significantly increased over the last 15 years. Included in these increased numbers is a rise in nurse judgment violations (Klaassen, Smith, & Witt, 2011). Practicing the application of ethical and legal principles to real situations helps cultivate confidence in nursing judgment. To illustrate the process of ethical and legal reasoning, a case study and examination of the practice of palliative sedation is presented.

What is Palliative Sedation?

According to the American Medical Association, palliative sedation is "the use of sedative medications to relieve extreme suffering by making the patient unaware and unconscious (as in a deep sleep) while the disease takes its course, eventually leading to death" (Brender, Burke, & Glass, 2005).

A CASE STUDY: Annie's Story (Angelique Flowers)

For my case study, I used a real life story taken from headlines. It is Angelique Flower's story. I have given her the nickname "Annie." A summary of the case study is below, but I invite you to hear her story first person by watching the video. It is easier to make determinations about ethics and law when we do not know the person, but our opinions might change when we have personal knowledge. As nurses our care is personal, so I believe Annie's video helps bring that to light more effectively than words on a paper.

Karen is a fictional character inserted into Annie's story to illustrate the ethical, legal, and moral implications for nurses that could possibly be involved in this or similar stories. I have also transported Annie to California from Australia so I could discuss the legal issues in the state where I live.

CASE STUDY:

Annie is a 31 year-old woman living in California who is admitted to hospice care after a 16 year long battle against Crohn’s disease and recent diagnosis of stage IV aggressive colon cancer that has metastasized to her liver, abdominal aorta, lymph nodes, uterus and ovary. Chemotherapy has been ineffective. Despite stents placed in her colon, she continues to suffer from the effects of a total bowel obstruction resulting from a large tumor. Annie has declined the risky surgery to remove this obstruction because it would require her last days to be spent in even more pain during recovery. Currently, she is experiencing excruciating abdominal swelling, pain and vomiting of fecal matter which leaves her incapacitated. She is also at risk for peritonitis if the tumor were to burst. Large doses of fentanyl have been unsuccessful in controlling her pain and anti-nausea medications are not working. Her doctors have given her only months to survive. Annie has already signed a DNR order and is an outspoken proponent for euthanasia.

As part of Annie’s interdisciplinary healthcare team at hospice, a palliative care nurse practitioner, Karen, is concerned about her own legal and ethical responsibilities in this situation. Palliative sedation appears to be a viable option for Annie as she meets the criterion: imminent death, previous attempts at palliative treatments have not brought desired relief, DNR orders are in place, a desire exists to relieve suffering, and palliative specialists believe Annie’s condition warrants the treatment (Marshall, 2009). Because of Annie’s appeal for euthanasia, Karen wonders if palliative sedation could be seen as a substitute for physician-assisted suicide or euthanasia, both of which are illegal where she practices. Karen’s questions about this are not unfounded. Thulesius, Scott, Helgesson & Lynoe (2013) point out that there is conceptual confusion when speaking of death and dying, in that people usually do not readily distinguish between differing actions such as euthanasia, physician-assisted suicide, palliative sedation, or withdrawal of life sustaining treatments. Furthermore, Hahn (2012) reports that there is currently very little research or even any standard definition to adequately distinguish palliative sedation from other end of life managements. Karen worries that she could be pulled into legal troubles if she offers information about or assists in the act of palliative sedation in Annie’s care.

Ethical Considerations

Grant and Ballard (2011) define non-maleficence as the act of protecting those we care for from harm, whether with or without intention to do so. When examining the practice of palliative sedation, a nurse practitioner could be at risk of violating this ethical principle. In Annie’s case, the nurse practitioner, Karen, must balance her duty to promote health and prevent illness with her duty to alleviate suffering and support the dying (American Nurses Association, 2001). Karen understands that the process of palliative sedation can present some harming effects such as respiratory suppression and inability to interact with family or friends, as well as inhibiting the opportunity to make continued decisions regarding health treatments (Lubbe & Stange, 2009). Yet, Karen has also witnessed the agony of Annie’s deteriorating health and believes that palliative sedation could be the key to a dignified and comfortable departure for her from this life of relentless torment. Karen is challenged in having to balance the possible negative outcomes of the treatment with the apparent negative results of Annie’s current health condition. Karen also ponders the valuable idea of intention in non-maleficence. Although the aim in palliative care may be directed at relieving pain and not hastening death, there is no guarantee that its effects will not be the precise thing that kills Annie. Karen wonders if she is being true to the principle of non-maleficence by participating in an action that has the potential to cause death, even if unintentionally.

Ethical Reasoning

The Function of Ethical Reasoning
Paul & Elder (2006) tells us that ethics examines the right and wrong, the helpful and harmful of human behavior. It is important to understand the egocentric tendencies of humans and counter those tendencies by cultivating outwardly motivated thoughts because our actions ultimately affect others (Paul & Elder, 2006). With palliative sedation, we must discuss opportunities for harm that could arise so we can be prepared to avoid the harm.

The Problem of Pseudo-Ethics
Pseudo-ethics evaluate issues using religion, social understandings, cultural ideals, political powers, and legality. It confuses a true discussion of ethics, which should be able to set standards of humanity across all social groups, regardless of politics, social status, or religious preference (Paul & Elder, 2006). For instance, one religious standard may believe that suffering is an essential part of our human existence and determine that palliative sedation violates that idea. This will not prove true across all religious views though. Staying focused on the principle of non-maleficence guides our thoughts toward protecting Annie from harm, regardless of how religion, politics, or social groups view this issue.

The Logic/ Elements of Ethical Reasoning
Paul & Elder (2006) have described eight different elements of ethical reasoning. The first is purpose. In Annie’s case, our purpose is to find a solution that produces the least amount of harm or potential for harm to her, those providing care, and society in general. Secondly, guiding this purpose, we must form a question: Is the harm of death more important than the harm of suffering? Our question will help direct our focus for the third element of ethical reasoning, the collecting of information pertinent to our issue. I found several articles that discuss this principle. Powers & McLean (2011) support the idea that if a person is terminally ill and there is no hope for life, then offering relief from suffering is a sound practice of doing no harm. Broekhaert & Lueven’s (2011) position is that the harm is attached to the intention. Since palliative sedation’s intention is to relieve suffering, not cause death, then there is no harm (Broekhaert & Lueven, 2011). Berger (2011) discusses how palliative sedation has the potential to cause dehydration enough that the patient dies from this effect of treatment, rather than the terminal illness, and then should be considered a form of killing, or harm. The fourth element of ethical reasoning has us look for concepts. In Annie’s case, the prime principle that stands out is non-maleficence, or doing no harm. Some competing principles in this scenario involve Annie’s rights to make decisions for herself (autonomy) and of course the alternate to non-maleficence, beneficence or in doing well for Annie. The fifth element relates to assumptions. The main theme I have seen throughout my research in this case is that the benefit of relief of suffering outweighs the potential for death in terminally ill patients with intractable pain. Since the positive sides of the issue are most discussed, it would be easy to assume this is most right. However, the sixth element of reasoning directs us to look at differing points of view. It is important to make efforts to search out the other side of arguments. Valko (2002) believes that palliative sedation is a way of getting around euthanasia laws and says that pain can be controlled in other ways. Billings & Churchill (2012) offer a comprehensive look at the issue by applying several different ethical frameworks to the issue. Instead of just relying on double-effect which decides moral good based on intention, they show how deontology would reject palliative sedation because it cannot be applied without harm universally (Billlings & Churchill, 2012). Considering all of this information, the seventh step is to begin drawing conclusions. I would tend to reason that Annie’s case warrants palliative sedation, but I believe these cases need to be evaluated carefully and separately. For Annie, there does not seem to be any other options to relieve her pain. The last element ponders the implications of my conclusion. If I follow my idea to pursue palliative sedation with Annie, I will contribute to relieving her suffering but also may be vulnerable to legal scrutiny. If Annie is not offered palliative sedation, while I might feel a protector of the sanctity of life and safe from prosecution, Annie continues to suffer her last days in mortality.

Advantages and Disadvantages
The advantage to ethical reasoning for advanced practice nurses is that we will be prepared to meet the challenges of healthcare concerns. As we practice applying principles to different cases, we will become skilled in how to intellectually evaluate situations and will have confidence in our conclusions. Sometimes, dissecting a situation too much may lead to more confusion on the topic and will never lead to satisfaction. We should remain focused on finding solutions that provide the best care and produces the least harm.

Legal Considerations

Annie’s case is special, in that she is a largely outspoken proponent of euthanasia who has gained international attention with her pleas to be allowed to die. Her case has likely piqued the interest of groups opposed to euthanasia who may carefully observe the details of Annie’s end of life care. The legal implications associated with Annie’s case cause significant distress for Karen. She should be worried as there are no current standards set for the practice of palliative sedation (Hahn, 2012). It could be deemed that the definition of palliative sedation is ambiguous enough to link it to euthanasia. According to California law, euthanasia is illegal whether by deliberate act or omission (California Probate Code §4653). After Annie’s death, a criminal suit could be made by zealous opponents to euthanasia claiming palliative sedation is just another form of euthanasia, resulting in possible felony charges for Annie’s healthcare providers (California Penal Code §10.401). Even if just to set precedence, Annie’s care could come under extreme legal scrutiny and Karen could face real consequences.

Legal Reasoning

Interpretation in Legal Reasoning
The issue in this case study is whether or not palliative sedation could be considered assisted suicide or euthanasia.

Coherence in Legal Reasoning
California law states that mercy killing, assisted suicide, and euthanasia are not permitted (California Probate Code §4653). Also, there are no permissions for acts to end life deliberately or by omission other than when a person (or their surrogate) has decided to withhold or withdraw health care (California Probate Code §4653). To break down this law into its elements, we see that:
(1) mercy killing, assisted suicide, and euthanasia not permitted(
(2) we cannot end life deliberately (except when a person [or surrogate] has decided to withdraw or withhold health care to permit natural process of dying)
(3) we cannot end life by omission (except when a person [or surrogate] has decided to withdraw or withhold health care to permit natural process of dying).

Logic in legal reasoning
The material facts relevant to this case are:
(1) Palliative sedation is not well-defined or readily distinguished as separate from mercy killing, assisted suicide, or euthanasia (2) palliative sedation has the potential to end life
(3) palliative sedation is not equal to withdrawing or withholding health care.

Case law
In the case of Vacco v. Quill (1997), the U.S. Supreme Court upheld that there is an important and logical distinction between withdrawal of life-saving treatments and physician-assisted suicide, explaining that allowing someone to die and causing someone to die are separate entities. Applying this rule to Annie’s case, palliative sedation is an intervention given by a healthcare provider that has the potential to end her life, essentially causing her to die. Assisted suicide is the act of causing someone to die. Therefore, until there is solid legislation differentiating the intervention of palliative sedation to assisted suicide, mercy killing, and euthanasia, it could be argued that it is a form of assisted suicide and thus violates the law.

Legal Analysis
We have laws that solidly identify and quantitate the differences between assisted suicide and withdrawal of life saving treatments, but ambiguity dances around the practice of palliative sedation. Applying the rule to the fact shows that there is a need for a better definition of palliative sedation. Without this definition, the practice could be construed as a violation of the law, causing undo confusion and severe moral distress for nurses.

Ethical and Legal Solution

A doctrine yet to be fully discussed is that of double effect. According to Fry, Veatch, & Taylor (2011), this idea proposes that harm, even death, is ethically sound when the act in itself is not bad, the intention is good, the harm is not a means to the good, and there is a proportionally significant cause to permit the harm. Double effect in essence tells us that if there is not a direct intention to hasten death, then it does not violate the principle of non-maleficence. The Harvard Community Ethics Committee examined the practice of palliative sedation, what they termed continuous deep sedation (CDS), and concluded that it was an appropriate end of life treatment option when terminally ill patients’ were suffering from pain otherwise unable to be relieved (Powers & McLean, 2011). Moreover, the United States Supreme Court has upheld rulings in support of palliative sedation, patients willing (Washington v. Glucksberg, 1997). Karen might be reassured by these findings and ideas. Understanding the law and searching out intelligent discussions related to the ethical concerns in this matter is important. What if she still feels uneasy, though? Palliative sedation can easily be argued against when attempting to place meaning on the ambiguous idea of intention, as intention can be very complex. The solution to this issue must be addressed with clear clinical guidelines that can direct Karen in how to proceed and that will form the basis of protection against litigation. These guidelines must include, at a minimum (Parker, Paine, & Parker, 2011):
(1) Detailed steps to ensure adequate informed consent is obtained.
(2) A process by which careful collaborative examination by a palliative specialist team is established in cases where palliative sedation is an option or request.
(3) Carefully determined criterion for patients to meet in order to qualify for the practice such as terminal illness and pain unrelieved with other aggressive treatments.
(4) Clear documentation that the intent of this practice is to relieve suffering and pain, not hasten death.
(5) Assurance that palliative sedation is used as a last resort only.

Conclusion

Applying a case to law and ethics helps to understand how both are involved in the care advanced practice nurses can confront. We know that healthcare is only going to become more complex as time progresses and as a palliative care nurse practitioner, end of care issues are commonplace. It is necessary that we have the skills to carefully access and evaluate the regulations that govern our care. Just as important is the ability to readily identify ethical challenges and have confidence in our abilities to act with moral integrity, respecting others, preserving good, and countering harm. Palliative sedation is a controversial subject that is not fully protected at this time. A clearer appreciation for the complexity of defining true intentions should be more fully explored. Advanced studies that promote sound clinical guidelines in this practice are essential to safeguard the care palliative nurse practitioners participate in. We need to discuss these matters precursor to and independent of emotionally charged scenarios such as Annie’s so we have frameworks that offer the best care while still protecting the interests of the nurse practitioners involved. As we nurture our reasoning talents by study and experience, we can be examples to other nurses and heroes for our profession.

References

American Nurses Association. (2001). Code of ethics with interpretive statements. Retrieved from http://www.nursingworld.org/MainMenuCategories/EthicsStandards/CodeofEthicsforNurses/Code-of-Ethics.pdf.

Berger, J.T. (2011). Clarifying the ethics of continuous sedation. American Journal of Bioethics, 11(6), 46-47.

Billings, J.A. & Churchill, L.R. (2012). Monolithic Moral Frameworks: How Are the Ethics of Palliative Sedation Discussed in the Clinical Literature? Journal of Palliative Medicine, 15(6), 709-713. doi:10.1089/jpm.2011.0157

Brender, E., Burke, A., & Glass, R.M. (2005). The Journal of the American Medical Association, 294(14). doi:10.1001/jama.294.14.1850

Broekhaert, B. & Lueven, K.U. (2011). Palliative sedation, physician-assisted suicide, and euthanasia: “Same, same but different”? American Journal of Bioethics, 11(6), 62-64.

Fry, S., Veatch, R., & Taylor, C. (2011). Case Studies in Nursing Ethics (4th ed.). Sudbury, MA: Jones & Bartlett Learning.

Grant, P.D. & Ballard, D.C. (2011). Law for nurse leaders: A comprehensive reference. New York, NY: Springer Publishing Company.

Hahn, M.P. (2012). Review of palliative sedation and its distinction from euthanasia and lethal injection. Journal of Pain and Palliative Care Pharmacotherapy, 26, 30-39.

Klaassen, J., Smith, K.V., & Witt, J. (2011). The new nexus: Legal concept instruction to nursing students, teaching-learning frameworks, and high fidelity human simulation. Journal of Nursing Law, 14(3 & 4), 85-90.

Lubbe, A.S. & Stange, J.H. (2009). Palliative sedation-reflections and considerations: a case study. Progress in Palliative Care, 17(3), 126-129.

Marshall, C.F. (2009). Palliative sedation at the end of life: Exploring the conflict of duty. Advance for NPs & PAs, 17(5). Retrieved from http://nurse-practitioners-and-physician-assistants.advanceweb.com/Article/Palliative-Sedation-at-the-End-of-Life.aspx.

Parker, F.R., Paine, C.J., & Parker, T.K. (2011). Establishing an analytical framework in law and bioethics for nurses engaged in the provision of palliative sedation. Journal of Nursing Law, 14, 58-67. doi:10.1891/1073-7472.14.2.58

Paul, R. & Elder, L. (2006). The thinkers guide to understanding the foundations of ethical reasoning. Tomales, CA: Foundation for Critical Thinking.

Powers, C.L. & McLean, P.C. (2011). The community speaks: Continuous deep sedation as caregiving versus physician-assisted suicide as killing. American Journal of Biothics, 11(6), 65-66.

Thulesius, H.O., Scott, H., Helgesson, G., & Lynoe, N. (2013). De-tabooing dying control: a grounded theory study. BMC Palliative Care, 12(13). doi:10.1186/1472-684x-12-13

Vacco v. Quill, 521 U.S. 793 (1997).

Valko, N.G. (2002). Sedated to death: When “comfort care” becomes dangerous. Retrieved from http://www.hospicepatients.org/n-valko-terminal-sedation.html.

Washington v. Glucksberg, 521 U.S. 702, 732-33. (1997).

Angelique's Truth: The full story

For those interested in the real outcome of Angelique's story, you can read about her here.

Discussion on Civility in Nursing

In Annie's story, there is a potential for incivility to occur between those who oppose palliative sedation and those who are asking for it (Annie) or participating in it's treatment (Karen and other healthcare providers).

I guess the most important thing I have learned from discussing ways to confront incivility is that it is necessary to do something about it. We cannot sit idly by while disrespectful assaults are taken against us personally, or us as a group. Even though I have experienced incivility or bullying, I did not identify the behavior as this until discussing this topic this week. Once I was able to recognize my own experiences as well as witnessed behaviors of others as incivility, I was relieved that I could put a name to it. I truly believe that once we have a proper “diagnosis,” we can finally focus our attention on proper treatment. In the case of incivility, it is relieving to understand that there are ways to preserve integrity and counter attacks in the midst of it. I love that Cynthia Clark has really brought this matter to attention in her nursing research. She emphasizes the need for practice and application of civility activities to be a priority in nursing environments (Clark & Ahten, 2011). One of my favorite ideas presented by Clark & Ahten (2011) is the need for nursing leaders to be the “guide on the side.” Instead of just preaching to staff nurses about civility, give them instruction on how to do it and then allow them to discuss and role play scenarios. I love Clark’s simple suggestions on how to work through situations of incivility (Clark, 2013). We should begin by stepping back and reflecting on the issues at hand. In this we should also plan how to approach the person of interest. Next comes the hardest part: the conversation. Clark (2013) breaks down this process into a simple mneumonic: DESC. D tells us to describe the issue we are having, E has us explain how this issue impacts us, S prompts us to state what we want the outcome to be, and C urges us to give a consequence or explain what our next action will be if things do not resolve. This is an easy tool to remember when faced with an uncomfortable situation. A great pamphlet outlining Clark’s recommendations can be accessed here.

References:
Clark, C.M. (2013). Stress, coping, healing and the quest for civility. NSNA Imprint, 34-39. Retrieved from http://hs.boisestate.edu/civilitymatters/docs/Stress-coping-healing-Imprint-Clark-2013.pdf.
Clark, C.M. & Ahten, S.M. (2011). Nurses: Resetting the civility conversation. Retrieved from http://www.medscape.com/viewarticle/748104_4.