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Q-1

AGACNP's role in facilitating end-of-life care would be the same as any healthcare professional as we all have a responsibility in protecting the patient's interests and honoring their wishes (Walker & Serviduduio, 2015). When terminal diseases arise, the best course of action is to begin conversations with the patient about their own wishes and to have close family members present who will listen to the conversation, add their own input, and also understand where the patient is coming from (Walker & Serviduduio, 2015). The earlier that these conversations can occur, the more time for mutual understanding can happen between the patient and their partner (Walker & Serviduduio, 2015).

The tricky part comes after these conversations have established a mutual understanding between the patient, spouse or partner, and provider (Cogo & Lunardi, 2015). The tricky part is establishing a living will or advanced directive (Cogo & Lunardi, 2015). A living will is a type of advanced directive that becomes effective when a person is terminally ill and an advanced directive is a specific set of instructions that someone prepares in advance of ill health that determines their healthcare wishes (Cogo & Lunardi, 2015). A living will is specific and cannot be changed by anyone besides the person whos' living will it is, and an advance directive is more dynamic and can be changed at any time by any person who is named to have decisional making capacity over the patient (Cogo & Lunardi, 2015).

With this confusing ruleset of advanced directives and living wills, there are many times where a patient becomes incapacitated and then the next of kin is asked to make decisions. Sometimes with an advanced directive, the next of kin changes or makes decisions that go against the advanced directive but healthcare professionals still have to honor them. In certain states, living wills and advanced directives don't hold much weight when it comes to decisional making capacities or decisions that have been previously made.

For example, in the MSICU that I work in, there are many times where a patient comes into the ICU and ends up incapacitated and unable to make their own decision from a variety of disease processes. During these times, more often then not, the patient has a living will or advanced directive, and the partner, spouse, next of kin, or significant other decides to proceed as a full code, despite the advanced directives or living wills saying otherwise. When the healthcare team runs into these issues we try to reason with the person who can make decisions, sometimes it's easy, and sometimes it is not. For the difficult ones, we pull out a copy of the advanced directive and living will and go over it with them to explain to them that this is not what the patient wanted. For the extremely difficult ones, we abide by their wishes while we get the ethics committee involved.

References:

Cogo, S. B., & Lunardi, V. L. (2015). Anticipated directives and living will for terminal patients: an integrative review. Revista Brasileira de Enfermagem, 68(3), 464. https://doi-org.lopes.idm.oclc.org/10.1590/0034-7167.2015680321i

Walker, S., & Serviduduio, C. (2015). How Can Palliative Care Discussions Occur Earlier in Patients’ Diagnoses? ONS Connect, 30(2), 21–26.

Q-2

Most terminal diseases that are seen in the MSICU where I work have been known to the patient for a number of years. Most of the time, it involves COPD or CKD. These are chronic progressive diseases that the patient has been seeing a provider for a number of years and where early conversations with the patient and family about advanced directives and living wills would have been a benefit for the end-stage time (Cogo & Lunardi, 2015);(Walker & Serviduduio, 2015).

In times that the family members disagree with the patient's request, makes the care of the patient difficult and morally ambiguous for healthcare staff. In Florida, advanced directives and living will do not carry as much legal weight as family members' decisions, so the idea is that advanced directives and living wills are viewed as more as a guide, and the family member's decision is more so as law.

When the family members' decisions go against the patient's wishes, we as healthcare staff usually begin the conversation with "what would the patient want in this situation" and this usually gets the family member thinking about what they are doing and how they are going against the patient's wishes. Sometimes family members have other psychosocial feelings such as guilt, or fear of loss, which forces them to make decisions that prolong the patient's life against their wishes. Conversations that we try to have with the family members are attempts to get the family member to go along with the patient's wishes. If they still refuse, we bring out their living will or advanced directive and go over it with the family, and if that doesn't work we get the ethics committee involved.

An example of applying principles of advanced directives and living wills to a patient with a chronic terminal illness while promoting wellness and independence would be patients who have contracted Duchenne's muscular dystrophy (Ouimet Perrin & Kazanowski, 2015). While this disease can manifest between the ages of 2-16, the survival rate has increased to approximately 35 years of age (Ouimet Perrin & Kazanowski, 2015). These patients end up with progressive muscular weakness until the disease begins to affect the respiratory or cardiac muscles (Ouimet Perrin & Kazanowski, 2015). With these patients, it is important to explain the disease and its course of action, that is age-appropriate to both the patient and family (Ouimet Perrin & Kazanowski, 2015). Even though the patient (ages 10 and up) may not be considered a legal adult, it is my opinion that it is morally and ethically wrong to take the decision out of their hands and into someone else's. However, the state does not have the same viewpoint, so for that reason, it is important to explain the disease to all parties involved accurately, and include the patient in the decision-making process (Ouimet Perrin & Kazanowski, 2015). It is important to include the patient in all parts of the healthcare process, and honor their wishes when it comes to the end of life decision making (Ouimet Perrin & Kazanowski, 2015). It is their life anyways, it should be their choice how it is lived, and even in death.

References:

Ouimet Perrin, K., & Kazanowski, M. (2015). End-of-Life Care. Overcoming Barriers to Palliative Care Consultation. Critical Care Nurse, 35(5), 44–52. https://doi-org.lopes.idm.oclc.org/10.4037/ccn2015357

Walker, S., & Serviduduio, C. (2015). How Can Palliative Care Discussions Occur Earlier in Patients’ Diagnoses? ONS Connect, 30(2), 21–26.

Q-3

The advance directive is a legal document providing specific instructions for both family members and health care providers on the treatment plan when the patient becomes incapacitated. This document is active with an ability to adjust to the patient’s situation depending on new knowledge or changes in medical condition. End of life care decisions can be made expressing the patient’s values and beliefs according to the National Institute on Aging, (2018 p.3). The patient with an advance directive can also appoint someone to make decisions on their behave if incapacitated discussed by Miller, (2017, p.4). Living wills are legal documents that clearly state what actions are to be taken if the patient is incapacitated. To reduce the stress of making decisions during an emergency while providing the patient an opportunity to complete this important task, the 5 Wishes Document is a solution researched by Miller, (2017, p.5).

A clinical scenario facing future AGACNPs is when the patient didn’t complete the advance directive form and the wishes were never finalized into a legal document. The family has their own wishes and desires that are directly opposite of the patients. In this clinical scenario, the patient will have to be medically treated regardless of family wants and desires according to Wheeler,(2016, p.650). The AGACNP plays a pivotal role in educating the family on the patient’s current medical condition, discuss treatment options, as well as incorporating palliative or hospice care if required discussed by Wheeler, (2016, p.651.).

When the patient and AGACNP have had those discussions related to a living will and what the plan will be then when the situation arises the treatment options have already been determined. This scenario provides the AGACNP the opportunity to the leader through educating the family during this difficult process. The living will while ensuring the patient’s medical wishes are fulfilled if incapacitated during an emergent medical condition stated by Miller, (2017, p.7).

References

Miller, B. (September 6, 2017). Nurse in the know: The history and future of advance directives. Online Journal of Issues in Nursing, 22(3), 1-13. https://doi.org/10.3912/OJIN.Vol22No03PPT57

National Institute on Aging. (January 15, 2018). Advance care planning: Healthcare directives. Retrieved from https://www.nia.nih.gov/health/advance-care-planning-healthcare-directives

Wheeler, M. S. (November 9, 2016). Primary palliative care for every nurse practitioner. Journal for Nurse Practitioners, 12(10), 647-653. https://doi.org/10.1016/j.nurpra.2016.09.003