Autonomy—the right to accept or decline medical treatment—is a fundamental aspect of healthcare ethics (American Nurses Association (ANA), 2011; Plakovic, 2016). Nurses play a key role in informing patients and families about end-of-life issues and in educating them about legislation that upholds patient autonomy when the patient can no longer communicate their wishes. Before the Patient Self-Determination Act, cases like Karen Ann Quinlan and Nancy Cruzan highlighted situations where patients were subjected to prolonged, futile treatments for over a decade (Miller, 2017). Today, advance directives enable patients to document their preferences while capable of doing so. However, ethical challenges remain if these directives are vague or absent. Ultimately, it is in the best interest of patients and their families to ensure that advance directives are properly used and regularly updated.

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 enable them to recognize when death is at hand and to communicate this effectively to the family (ANA, 2016). Part of the nurse’s role at the end of life is to involve the multidisciplinary team to manage symptoms and keep the patient comfortable, as well as to 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 involves the following strategies:

· Assessing the patient to determine what the patient wants 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 anxiety.

· Involving medical translators and interpreters as necessary to communicate with the patient and family should the nurse and the multidisciplinary team members not 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, ensuring that the patient’s needs and desires, as 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, providing educational materials for the family, and respecting and accommodating 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 stems from end-of-life legislation under 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 regarding the discontinuation of the ventilator sparked a movement in states to pass living will laws, allowing patients to 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 on total care, including tube feedings (Miller, 2017). The pursuit of court cases led to Congress passing the Patient Self-Determination Act in 1990, which ensures patients are informed about advance directives 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 allows 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 expected to live for 1 year or less, due 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 lacks advance directives and is unable to provide informed consent, most states have a ranking order for decision-making, often starting with the patient’s spouse. Eleven states have a method for protecting patients without families or friends, whereby a provider, in tandem with an ethics committee or a peer-reviewed provider group (Wood, 2015). For the 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 determining the patient’s treatment preferences.

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

The keystone of ethics in medicine is autonomy, which means patients have the right to accept 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 in which a patient has appointed a durable power of attorney for healthcare but has not discussed their wishes with the party, as well as cases in which the patient has no advance 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 beneficence (advocating for the patient, doing good for the patient). Regarding the former, families often lack health literacy to understand that 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 experience moral distress in these situations, feeling helpless to resolve the escalating 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 to end, 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 he had 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, that 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 rather than declining, creating strife within the family as well as among the health care team members (Plakovic, 2016). This issue could have been resolved by using clear, specific language in durable power of attorney for healthcare documents, as well as by having a living will and a 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 patients’ self-determination and, hopefully, prevent cases like C.J.’s 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/

Between Life and Death: A Gospel-Centered Guide to End-of-Life Medical Care

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

Gone from My Sight: The Dying Experience

The Eleventh Hour: A Caring Guideline for the Hours to Minutes Before Death

By Your Side, A Guide for Caring for the Dying at Home

The National Academy of Elder Law Attorneys (NAELA) is dedicated to improving the quality of legal services provided to older adults and people with disabilities

Articles on Advance Directives

Eldercare Locator: a nationwide service that connects older Americans and their caregivers with trustworthy local support resources

CaringInfo – Caregiver support and much more!

The Hospice Care Plan (guide) and The Hospice Care Plan (video series)

Surviving Caregiving with Dignity, Love, and Kindness

Caregivers.com | Simplifying the Search for In-Home Care

Geri-Gadgets – Washable, sensory tools that calm, focus, and connect—at any age, in any setting

Healing Through Grief and Loss: A Christian Journey of Integration and Recovery

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Caregiver Support Book Series

• Beyond the Living Will: Creating Effective Advance Directives
• Daily Hospice Care Planner: Organize, Communicate, and Provide Consistent Care
• VSED From a Hospice Nurse Perspective: Voluntary Stopping Eating and Drinking, a Way to Choose
• Hospice Medication Handbook: A Caregiver’s Guide to Comfort Medications
• Nourishing Hope: A Caregiver’s Guide to End-of-Life Nutrition
• Palliative Care vs Hospice Care: Making Informed Decisions
• Palliative Sedation: A Compassionate Approach
• The Caregiver’s Lifeline: Self-Care in End-of-Life Care
• The Hospice Journey Handbook: Your Complete Guide Through the Hospice Experience
• Understanding Breathing at End-of-Life: A Family Guide to Comfort Care
• Understanding Your Rights in Hospice Care: A Guide for Patients and Families
• Validation and Compassion: A Guide to Connecting with Terminally Ill Loved Ones
• When is it Time for Hospice?: A Compassionate Guide for Families and Caregivers

VSED Support: What Friends and Family Need to Know

My Aging Parent Needs Help!: 7-Step Guide to Caregiving with No Regrets, More Compassion, and Going from Overwhelmed to Organized [Includes Tips for Caregiver Burnout]

Take Back Your Life: A Caregiver’s Guide to Finding Freedom in the Midst of Overwhelm

The Conscious Caregiver: A Mindful Approach to Caring for Your Loved One Without Losing Yourself

Dear Caregiver, It’s Your Life Too: 71 Self-Care Tips To Manage Stress, Avoid Burnout, And Find Joy Again While Caring For A Loved One

Everything Happens for a Reason: And Other Lies I’ve Loved

The Art of Dying

Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying

Compassion Crossing Academy — Free and paid online courses are available to teach caregivers, nurses, social workers, chaplains, end-of-life advocates, and educators, including death doulas, how to coordinate complex care confidently.

Bridges to Eternity: The Compassionate Death Doula Path book series:

• Becoming a Death Doula: Foundations and Practice
• Becoming a Death Doula: Business Growth
• Becoming a Death Doula: A Complete Guide to Starting Your End-of-Life Doula Practice (Foundations and Practice and Business Growth combined)
• Death Doula Intake Guide: A Practical Framework for First Conversations, Safety Checks, and Forms
• Carrying Loss Forward: Coaching Clients Through Grief and Integration
• Crafting Meaningful Legacies: A Guide for End-of-Life Professionals
• Crucial End-of-Life Conversations: A Compassionate Guide for End-of-Life Professionals
• End-of-Life Doula Care Planning: A Complete Guide to Compassionate Care
• Vigil Planning Guide: Creating Sacred Space in Life’s Final Chapter

Find an End-of-Life Doula

• Compassion Crossing, LLC, provides on-site services in Madison County, Kentucky, and offers virtual options if no local provider is available.
• Hospice Buddy: Although Jamie Haberman, RN, CHPN, isn’t a certified end-of-life doula, her virtual services are very valuable.
• The National End-of-Life Doula Alliance (NEDA)
• Death Doula Directory
• The International End-of-Life Doula Association (INDELA)

Currently, there is no official organization regulating end-of-life doulas (EOLDs). Keep in mind that some listed EOLDs in directories might no longer be practicing, so verifying their current status is essential.

End-of-Life Doula Schools

The following are end-of-life (aka death doula) schools for those interested in becoming an end-of-life doula:

• The International End-of-Life Doula Association (INELDA)
• University of Vermont. End-of-Life Doula School
• Heart Bridge Holistic Training and Mentorship
• National End-of-Life Doula Alliance (NEDA): It is not a school, but it provides a certification pathway.
• Compassion Crossing Academy: While it’s not a dedicated death-doula school, it offers distinctive classes that can help a death doula expand their business. It’s a valuable resource for those eager to grow and deepen their knowledge in this meaningful field.

Keep in mind that there is currently no official accrediting organization for end-of-life doula programs. Earning certification simply indicates completion of an unaccredited program. It’s recommended to have discovery sessions with any death doula school you’re interested in—whether or not it appears here—to ensure it aligns with your needs. Additionally, ask questions and reach out to references, such as former students, to determine whether the school provided a strong foundation for starting your own death doula practice.

End-of-Life-Doula Articles