End of Life Decisions

End-of-Life Case Study

Abstract

The ethical issues that arise in decision-making process to end-of-life care will be addressed. Patient’s autonomy and preferences about treatment and end-of-life care should be respected by all parties which are inclusive of, but are not limited to; health professionals and family members. A patient may be incapacitated and may, thus, be unable to make decisions. In such a case, the values and preferences of the patient should be respected through an advanced directive. The said document comprises of the treatment preferences of the patient and an attorney who is allowed to make decisions when the patient is not able to do so. The case study below will come in handy in efforts to discuss the end-of-life care for a patient, who should make decisions in a case when there is no advance directive.

In North America, the adoption rate of advanced directives in low. When the rate is low, problems regarding who will make decisions in line with the values and preferences of the patient may arise owing to the fact that it may be hard to determine the person who will play the role of the surrogate. In the absence of advanced directives, about fifty states have set laws that determine who would play the role of surrogate in decision-making. Further, practices to increase the adoption of advanced directives in the American population will be highlighted. Towards the end the public policies that help increase the adoption rates as well as possible alternatives which are inclusive of, but are not limited to educational interventions and community programs will be discussed.

Introduction

This case study examines a case on end-of-life-care. The decision to end the life of a patient is a challenging process to both the family and the patient. This is more so the case given that the wishes of a patient need to be followed irrespective of their capability to make decisions. The patient’s autonomy must be taken into consideration in relation to end-of-life care. In this case, we focus on a case of a woman named Cynthia. Cynthia had a car accident which led to brain damage. As a consequence of this damage, she was in coma and was, thus, unable to move, speak, drink or even eat. Later, her husband-Robert emphasized that Cynthia’s desire was that all feeding tubes be removed. Cynthia’s sisters and mother argued that their daughter wanted the feeding tubes removed. After Cynthia’s mother sought assistance from the court, the case was ruled in her favor since no written request or directive was available. Cynthia died from an infection fourteen months after the court ruling. It was at that time that Robert found a note whereby Cynthia had requested not to be sustained by artificial means. This essay will discuss ethical and legal dilemmas in decisions to end-of-life care. Further, it will also address the importance of advance directives. Towards the end, it will provide possible solutions for such dilemmas.

Discussion

To start with, autonomy is the main ethical dilemma in this case. It would be prudent to note that autonomy is both a quality of human beings and a bioethical principle whereby an individual has the right to make her own decisions. Bioethical principles act as a guide to physicians - which ensures that the patient’s right to self-determination is preserved even when they are not able to do so. Lima, Rego & Siegra-Batista (2015) suggest that this is an intrinsic quality of human dignity that should be respected. In the present case, the said patient is not able to decide whether or not to continue with the feeding tubes owing to the fact that she is in coma. According to Karnik and Kanekar (2016), the healthcare wishes of a patient can be met at a time of terminal illness or disability if the said patient had created and written their healthcare decision plans in advance. This ability is given by an advance directive. There are two types of directives, proxy and instructional. In a proxy directive, a person has the authority to make a directive regarding their medical care even when they are not able to make decisions. On the other hand, only competent persons are allowed to make decisions in instructional directive.

Cynthia is in this case not able to make decisions and at the time of the request to remove the feeding tubes, there was no advance directive. It is important to note that in such a case, the family or caregivers are given the role to make decisions regarding patient’s treatment. Qian et al. (2013) state that,

In the absence of a legal guardian, a spouse, by default, becomes the surrogate, followed by an adult son or daughter, either parent, an adult sibling, an adult grandchild, a close friend and, lastly, the guardian of the estate if none of the former is available (772).

Members of the patient’s family are given the responsibility to give the preference of the patient in end-of-life care. Further, the husband - who is the surrogate - makes decisions that are in the best interest of the patient depending on how the patient had anticipated them or how they had discussed them. Karnik & Kanekar (2016) argue that relatives may put their interests ahead when making such decisions - whether due to religious, financial or emotional beliefs. Additionally, it is important to have an advanced directive that is known by the family so as to safeguard the patient’s autonomy.

It would be prudent to note that in this case, there is no advanced directive and the patient had not specified who can make her decisions. In such a situation, most states prioritize on who would make decisions by following the hierarchical list. Spouses, children have high priority in such cases. A dispute may arise in the decision-making process and states have different mechanisms to resolve them. According to DeMartino et al. (2017), there are laws in twenty-two states that address disputes in cases on multiple decision makers. The authors further suggest that 14 of those states follow the majority rule approach while 7 of those states require a consensus for such decisions to be possible. It is also possible that the dispute is against the default surrogate. In such instances, some states provide extrajudicial procedures that refute the decisions of the surrogate. This is seen in the case of Cynthia. Her relatives - mother and sisters - decided to go to court to challenge the default surrogate. There exists a Patient Self-Determination Law (PSDL) at the federal level. This law recognizes competent patient’s rights to either accept or reject medical treatment. In cases of non-competent patients, the law sets procedures for making decisions by substitutes. The said law requires HMOs, nursing homes, and hospitals to provide information on advance directives, do not requisite orders, and other documents (DNR) to their patients.

It would be prudent to note that only a small part of North American population has advance directives regardless of their promotion and existence of PDSL. Silveira et al. (2010) demonstrates the importance of the said law. The authors illustrate the probability of people with advance directives to receive end-of-life care in accordance with their preferences, i.e. 97.1% of patients who requested comfort care received it while 83.2% of patients who requested limited care received it.

Additionally, advance directives are important and have low adoption rates. For this reason, policy-makers have come up with practices such as Medicare-reimbursed doctor-patient consultations on end-of-life choices and Physician Orders for Life-Sustaining Treatments (POLSTs). POLSTs facilitates the communication between a patient and the doctor whereby medical interventions and treatments are discussed while advance directive gives the patient and the family some form of legal certainty. It is in such a case that a patient can discuss with their medical provider interventions which are inclusive of, but are not limited to; feeding processes, cardiopulmonary resuscitation, and intubation.

It would be prudent to note that there is more that needs to be done owing to the fact that advanced directives have low adoption rates. One of the alternatives would be to inform people of the importance of advanced directives and other options that are available. Practices such as Community-Based Programs and Educational Interventions in Formal Care Settings could be implemented. It is possible to accomplish the Community-Based Programs since such programs are customized to meet religious, cultural and social needs of a population (Carr & Luth, 2017). The other alternative is based on educational interventions in hospitals, long-term care facilities, and other formal care settings. One of the well-known programs is Respecting Choices. In this program, educational materials are provided to patients and health care providers are able to talk to them about end-of-life care. The program also ensures the availability of advanced directive in the medical records of the patient. In such a program, the patients are able to visualize different circumstances and analyze the available options through educational videos.