End-of-Life Decisions: Don’t wait until it’s too late for advanced directives

Published on May 3, 2020

Updated on November 7, 2023

Autonomy, the right to receive or refuse medical treatment is a crucial element of health care ethics (American Nurses Association (ANA), 2011; Plakovic, 2016). Nurses are involved in helping patients and families be aware of when end-of-life is occurring, and in educating the patient and family about end-of-life legislation that helps everyone committed to continue the right of when the patient is no longer able to express their wishes. Before the Patient Self Determination Act, we had the famous cases of Karen Ann Quinlan and Nancy Cruzan who were, from a point-of-view, forced to suffer for ten or more years of futile treatment (Miller, 2017). Now, we have advanced directives that allow patients to express their wishes while they are able, yet we still have ethical dilemmas when either those needs are expressed vaguely or not at all. It is in the best interests of the patient and the patient's loved ones for advanced directives to be utilized and kept up to date.

Role of the Nurse in End-of-Life Decision-Making with Patients and Families

According to the American Nurses Association (ANA) (2016), nurses are committed to supporting thorough and compassionate end-of-life care. The nurse's experience and training should allow them to identify when death is at hand and adequately communicate that with the family (ANA, 2016). Part of the nurse's role at end-of-life is to involve the multidisciplinary team so that symptoms are managed with the patient being kept comfortable, as well as provide comfort for the patient and family (ANA, 2016). According to Johnstone, Hutchinson, Redley, & Rawson (2016), the nurse's role in end-of-life decision making with patients and family involve the following strategies:

· Assessing the patient to determine what the patients want to occur for end-of-life.

· Using discretion for when to leave the family alone, and when to be there for the patient to reduce any fears or concerns the patient may be having concerning end-of-life.

· Determining who is the main point of contact in the family, supporting the family, and encouraging the family to communicate as well as helping the family to deal with .

· Involving medical translators and interpreters as necessary to communicate with the patient and family should the nurse, and the multidisciplinary team members don't understand the native language used by the patient or family members.

According to the ANA (2016), part of the nurse's role in end-of-life decision making is to advocate for the patient such that the needs and desires expressed by the patient or assessed by the nurse (as part of the strategies outlined above) are known by the family and healthcare team. This can include but is not limited to, obtaining orders for proper symptom management, educational materials for the family, and respect and allowances for the family's religious practices (ANA, 2016). According to the ANA (2016), part of the nurse's task is to assess whether the patient has advanced directives such as a living will and durable power of attorney. This function comes out of end-of-life legislation from the Patient Self Determination Act.

Legislation that Generated End-of-life Health Care Policies

According to Miller (2017), the journey towards the patient having the right to determine their end-of-life health care is believed to have begun when twenty-one-year-old Karen Ann Quinlan was in a fixed state of being brain dead after collapsing at a party. The hospital system decided it would be in Quinlan's best interest to be on a ventilator and tube feeding despite parental protests (Miller, 2017). The court hearings involved in the discontinuation of the ventilator started the journey of states passing living will laws where a patient could state their treatment wishes should they become incapacitated (Miller, 2017). When twenty-three-year-old Nancy Cruzan was involved in a motor vehicle accident that left her in a fixed brain-dead state, the providers in charge of her case decided for total care including tube feedings (Miller, 2017). The pursing court cases lead to Congress passing the Patient Self Determination Act in 1990 which ensures patients are informed about advance directories and the right to refuse treatment (Miller, 2017).

Primary Policies Defining Current Health Care Practices for End-of-Life Decisions

According to Miller (2017), advance directives can come in two forms which can be separate or combined, both of which are legal documents. The living will allow patients to determine what lifesaving methods they want if they are not able to make decisions, and the durable power of attorney for healthcare allows the patient to select a person who knows them well enough to make decisions for them should they be unable to do so for themselves (Miller, 2017). Both options can be combined to provide the patient with full autonomy and offer peace to family members as they have something to direct them should the patient become incapacitated (Miller, 2017). According to Nelson & Nelson (2014), the Physician Orders for Life-Sustaining Treatment (POLST), a state-based legal document (the living will and durable power of attorney for healthcare are federal laws) that most states have implemented, is a valuable add-on to advanced directives whereby the POLST is a set of medical orders based on the patient's desires for treatment including resuscitation, ventilation, and artificial feedings. POLST becomes active when a patient is only expected to live one year or less related to a chronic illness or based on the patient's age (Nelson & Nelson, 2014).

Federal law requires hospitals that receive payments from Medicare and Medicaid to assess patients if they have advance directives, give written material to patients concerning the right to receive or decline medical or surgical treatments, to provide patients with the ability to complete advanced directives, to protect against discrimination against patients who do not have an advanced directive, and set up training policies for patients, caregivers, and staff (Miller, 2017).

Effect of End-of-Life Regulations and Controls on Patient Outcomes

When a patient has all three legal documents in place — the healthcare living will, the durable power of attorney for healthcare, and the POLST, health care providers, and family members have clear guidelines as to treatment options and directions as based on the patient's expressed desires. According to Wood (2015), when a patient does not have advanced directives and is not able to provide informed consent, most states have a ranking order of who can make decisions for the patient often starting with the patient's spouse. Eleven states have a method of protecting patients without families or friends whereby a provider in tandem with an ethics committee or peer-reviewed provider group (Wood, 2015). For best patient outcomes, it is essential to have the living will, durable power of attorney for healthcare, and the POLST in place, so there are no gaps in trying to determine the desires of the patient regarding their treatment.

Ethical Considerations that have Influenced Policy decisions in End-of-Life Decisions

The keystone of ethics in medicine is autonomy where patients have the right to receive or refuse treatment offered by health care providers (Plakovic, 2016). When advanced directives including the POLST are in place, health care team members and families have a clear path to follow regarding respecting the patient's autonomy. According to Plakovic (2016), there are cases where a patient has appointed a durable power of attorney for healthcare but has not discussed their wishes with the party as well as examples where the patient has no advanced directives when they become incapacitated. According to Plakovic (2016), this often creates ethical and moral dilemmas between family members and healthcare team members in the areas of nonmaleficence (first, do no harm) and benefice (advocating for the patient, doing good for the patient). Regarding the former, families often lack health literacy to understand specific treatments such as artificial nutrition can have many risks without real benefits (Plakovic, 2016). This creates situations where the family member desiring their loved one to live longer will request treatments that are either high-risk to the patient or are otherwise treatments that are in vain (Plakovic, 2016). According to Plakovic (2016), nurses and providers often feel moral distress in these situations as they feel helpless to resolve the increasing family tensions and feelings of hopelessness.

Real-world example. According to Plakovic (2016), a real-world example includes the case of almost ninety-year-old C.J. whose past medical history includes “dementia, congestive heart failure, pulmonary hypertension, end-stage renal disease on hemodialysis, and stage 2 sacral decubitus ulcer (p. 382). C.J. was admitted to the hospital and found to have a stroke which resulted in C.J. having the inability to express himself properly, paralysis of the right side, along with severe trouble swallowing (Plakovic, 2016). According to Plakovic (2016), the patient did have a durable power of attorney for healthcare which was his daughter, Mary. According to Plakovic (2016), the document contained a statement by the patient: ‘‘I do not want my life to be prolonged, nor do I want life-sustaining treatment to be provided or continued if my agent believes [emphasis added] the burdens of the treatment outweigh the expected benefits. I want my agent to consider the relief of suffering, the expense involved, and the quality, as well as the possible extension of my life, in making decisions concerning life-sustaining treatments.'” (p. 382). Due to the case where the agent could use their belief system as to whether treatment would be beneficial, an ethical dilemma was created for the family where the son wanted treatment ended, but the daughter held onto the belief that artificial tube feeding would be in the best interest of the patient despite the risks disclosed by the Gastroenterology (Plakovic, 2016). The Gastroenterologist felt no other option but to provide the treatment because the daughter insisted even though he thought it was in vain and knew from experience and evidence-based practice there was more risk than benefit (Plakovic, 2016). This resulted in a gastrointestinal bleed and created moral and ethical distress for the registered nurse caring for the patient who felt she was being forced to torture the patient who went against the ethics of nonmaleficence (Plakovic, 2016). The daughter continued to fight for increasingly aggressive treatment, refusing to see the signs her father was suffering and believing he was improving vs. declining creating strife within the family as well as among the health care team members (Plakovic, 2016). This issue could have been resolved by having clear and specific language in the durable power of attorney for healthcare documents as well as having a living will and POLST.

Conclusion

Nurses need to continue to assess and educate patients and loved ones about end-of-life including the need for using all the advance directives legal documents available — the living will, durable power of attorney for healthcare, and the POLST with clear and specific language leaving no room for personal interpretation of the desires of the patient. This will take full advantage of the progress we've made in legislation protecting the self-determination of patients, and hopefully prevent cases like C.J. from happening in the future.

References

American Nurses Association (ANA) (2011). Short Definitions of Ethical Principles and Theories: Familiar words, what do they mean? Retrieved from http://www.nursingworld.org/MainMenuCategories/EthicsStandards/Resources/Ethics-Definitions.pdf

American Nurses Association (ANA) (2016). Nurses' Roles and Responsibilities in Providing Care and Support at the End of Life. Retrieved December 10, 2017, from http://www.nursingworld.org/MainMenuCategories/EthicsStandards/Resources/Ethics-Position-Statements/EndofLife-PositionStatement.pdf

Johnstone, M., Hutchinson, A. M., Redley, B., & Rawson, H. (2016). Nursing Roles and Strategies in End-of-Life Decision Making Concerning Elderly Immigrants Admitted to Acute Care Hospitals. Journal of Transcultural Nursing, 27(5), 471–479. https://doi.org/10.1177/1043659615582088

Miller, B. (2017, September). Nurses in the Know: The History and Future of Advance Directives. OJIN: The Online Journal of Issues in Nursing, 22(3). Retrieved from http://www.nursingworld.org/MainMenuCategories/ANAMarketplace/ANAPeriodicals/OJIN/TableofContents/Vol-22-2017/No3-Sep-2017/Articles-Previous-Topics/History-and-Future-of-Advance-Directives.html

Nelson, Joan M. DNP, ANP-BC; Nelson, Tessa C. BA. (2014). Advance directives: Empowering patients at the end of life. The Nurse Practitioner, 39(11), 34–40. https://doi.org/10.1097/01.NPR.0000454979.98327.89

Plakovic, K. (2016). Burdens Versus Benefits: When Family Has to Decide How Much Is Too Much. Journal of Hospice & Palliative Nursing, 18(5), 382–387. https://doi.org/10.1097/njh.0000000000000270

Wood, E. (2015, October). If There is No Advance Directive or Guardian, Who Makes Medical Treatment Choices? Journal of the Commission on Law and Aging, 37(1), 10–12. Retrieved from https://www.americanbar.org/groups/law_aging/publications/bifocal/vol_37/issue_1_october2015/hospitalist_focus_group/

Providing Comfort During the Last Days of Life with Barbara Karnes RN (YouTube Video)

Preparing the patient, family, and caregivers for a “Good Death”

Velocity of Changes in Condition as an Indicator of Approaching Death (often helpful to answer how soon? or when?)

The Dying Process and the End of Life

The Last Hours of Life

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