Ethics at the End of Life

Subtopic:

Advance directives in Palliative Care

An advance directive, also referred to as an Advance Healthcare Directive, is a legally recognized document designed to uphold patient autonomy. It allows individuals to formally express their preferences and instructions concerning future medical treatments. This becomes particularly vital when a patient loses the capacity to make healthcare decisions personally.

Advance directives are crucial instruments in palliative care. They serve as a formal record of a patient’s wishes regarding medical treatment, specifically intended for situations where they are no longer able to communicate their decisions directly. For patients receiving palliative care, two primary types of advance directives are commonly utilized:

  1. Living Will: This document outlines the patient’s specific desires or refusals regarding medical treatments, particularly in end-of-life scenarios. It typically focuses on treatments like life support, artificial nutrition, and resuscitation.

  2. Durable Power of Attorney for Healthcare: Also known by terms like healthcare power of attorney or healthcare proxy, this document designates a specific person (an agent or proxy) to make healthcare decisions on the patient’s behalf when they are unable to do so themselves. This agent is legally empowered to act according to the patient’s wishes and best interests.

Living Will

A living will is a legally significant document that empowers individuals to proactively maintain control over their healthcare decisions. It ensures their wishes are respected and followed, even in situations where they lose the capacity to make those decisions personally.

This type of advance directive becomes specifically relevant and applicable when an individual is facing:

  • A terminal illness where there is no reasonable prospect of a cure and death is expected.

  • A permanent unconscious state, often clinically described as a persistent vegetative state, where there is irreversible loss of consciousness.

The fundamental purpose of a living will is to clearly articulate an individual’s directives concerning medical treatments they would or would not want to receive under these specific circumstances. This includes crucial decisions about life-prolonging measures, such as:

  • Dialysis to treat kidney failure

  • Tube feedings for artificial nutrition

  • Artificial life support systems, like mechanical ventilators or breathing machines

For a living will to be legally valid and enforceable, it must meet certain requirements:

  • Written Document: The living will must be formally documented in writing.

  • Patient Signature: It must be signed by the patient, demonstrating their informed consent and wishes.

  • Witness Requirement: Typically, the signing of a living will must be witnessed by specific individuals who meet legal criteria. These witnesses are usually required to be:

    • Not the patient’s spouse.

    • Not potential heirs or beneficiaries of the patient’s estate.

    • Not the patient’s attending physicians.

    • Not employees of the healthcare facility where the patient is receiving care.

Key Elements Typically Included in a Living Will

A living will should clearly outline the individual’s preferences regarding various medical interventions. Key elements often addressed include:

  1. Medical Equipment Use: Specific instructions regarding the use of medical equipment to sustain life functions, such as:

    • Dialysis machines for kidney failure.

    • Mechanical ventilators or respirators to assist breathing.

  2. Do Not Resuscitate (DNR) Orders: Preferences concerning “Do Not Resuscitate” (DNR) orders, which indicate wishes about:

    • Cardiopulmonary resuscitation (CPR) if breathing or heartbeat ceases.

  3. Artificial Hydration and Nutrition: Choices regarding the administration of fluids (hydration) and nutrition (feeding) if the person becomes unable to take them orally. This often involves:

    • Intravenous (IV) fluids for hydration.

    • Tube feeding for nutritional support.

  4. Decision on Food and Fluids: A clear decision on whether to receive artificial food and fluids even if the individual loses the capacity to make other medical decisions. This is a critical aspect of end-of-life care planning.

  5. Pain Management and Palliative Care: Explicit preferences for pain management, symptom control, and palliative care, ensuring comfort and quality of life even when decision-making capacity is compromised. This emphasizes a focus on comfort rather than aggressive curative treatments.

  6. Organ and Tissue Donation: Expression of desire to donate organs or other body tissues after death, aligning with personal values and wishes regarding organ donation.

  7. Distinction between Comfort Care and Refusal of All Care: A clear understanding that choosing to forgo aggressive medical treatments is not equivalent to refusing all medical care. It is important to emphasize that:

    • Other forms of medical treatment, such as pain medication and antibiotics, can still be administered to ensure comfort and manage symptoms.

    • The primary goal of treatment shifts from seeking a cure to prioritizing comfort, dignity, and quality of remaining life.

Important Note: Individuals retain the right to revoke or change their living will at any point in time, as long as they possess the capacity to make such decisions. The living will should always reflect their current wishes and preferences.

Durable Power of Attorney for Healthcare / Healthcare Power of Attorney

A durable power of attorney for healthcare, also known as a healthcare power of attorney, is a crucial legal document that empowers an individual to designate a trusted person to act as their proxy or agent. This designated agent is authorized to make healthcare decisions on their behalf, but only in the specific circumstance where the individual becomes unable to make their own medical choices.

Key Principles Guiding Healthcare Power of Attorney:
  1. Proxy Authority to Communicate and Decide: The appointed proxy or agent is granted the legal authority to:

    • Communicate directly with doctors and other healthcare providers regarding the patient’s medical care.

    • Make healthcare decisions on the patient’s behalf, guided by the patient’s previously expressed wishes and values.

  2. Proxy’s Decision-Making Basis: The chosen proxy’s decision-making process is guided by:

    • Patient’s Known Wishes: The proxy’s primary responsibility is to determine the medical treatments or procedures that the patient would want or would not want, based on prior conversations and any documented preferences.

    • Substituted Judgment Standard: If the patient’s specific wishes are unknown or unclear in a particular situation, the agent is ethically and legally obligated to make decisions based on what they believe the patient would choose if they were able to decide for themselves. This is known as “substituted judgment.”

  3. Trust and Proxy Selection: It is of utmost importance that the individual selects a person as their proxy whom they deeply trust to:

    • Act in their best interests.

    • Faithfully carry out their wishes, even in emotionally challenging situations.

    • Make difficult decisions during times of stress, uncertainty, and sadness.

  4. Open Communication and Proxy Understanding: The individual should engage in open and thorough discussions with their chosen proxy to ensure:

    • The proxy is fully comfortable with and willing to accept the responsibility of this role.

    • The patient and proxy have discussed the patient’s healthcare wishes in detail, covering various potential medical scenarios and treatment preferences.

  5. Alternate Proxy Designation: It is highly advisable to designate an alternate proxy in addition to the primary proxy. This provides a backup agent in case the primary proxy becomes:

    • Unable to fulfill their role (e.g., due to illness or unavailability).

    • Unwilling to serve as proxy at the time of need.

    • Restrictions on Proxy Selection: Legal regulations typically restrict certain individuals from serving as healthcare agents to prevent potential conflicts of interest. Generally, healthcare providers, such as doctors, nurses, or other caregivers directly involved in the patient’s care, are prohibited from serving as agents, unless they are also close relatives of the patient.

Eligibility Criteria for a Client’s Healthcare Agent

The person chosen as a healthcare agent must meet specific legal requirements:

  1. Age Requirement: The agent must be 18 years of age or older.

  2. Exclusion of Treating Provider: The agent cannot be the client’s treating healthcare provider, ensuring independence in decision-making.

  3. Exclusion of Provider’s Employee: The agent cannot be an employee of the client’s treating healthcare provider, unless they are also related to the client (e.g., family member who is also a hospital employee).

  4. Exclusion of Residential Care Provider: The agent cannot be the client’s residential care provider if the client resides in a care facility, unless they are also related to the client.

  5. Agent’s Authority Activation: The healthcare agent’s authority to make decisions on behalf of the client is activated only when the client’s attending physician formally certifies in writing that the client lacks the capacity to make their own healthcare decisions.

  6. Proxy’s Decision-Making Obligation: Once activated, the agent must make healthcare decisions on behalf of the client, even in end-of-life situations, particularly if the client has not previously documented their healthcare directives in a living will.

  7. Client’s Right to Object: The agent cannot make decisions for the client if the client objects to the decision, regardless of whether the client is deemed legally incapacitated. A capacitated patient’s wishes always take precedence.

  8. Priority over Medical Power of Attorney: A healthcare power of attorney takes precedence over a previously established medical power of attorney if both exist, clarifying which document is currently legally controlling.

Key Terms Used in Advance Directives

Do Not Resuscitate Order (DNR)

  • Resuscitation Definition: In a medical context, resuscitation refers to medical interventions aimed at restarting a person’s heart and breathing when these functions have stopped. Common resuscitation methods include:

    • Cardiopulmonary resuscitation (CPR)

    • Use of life-sustaining devices such as ventilators or defibrillators.

  • Do Not Resuscitate (DNR) Order: A Do Not Resuscitate (DNR) order is a legally recognized medical instruction, documented in a patient’s medical record, that clearly indicates that medical staff should not attempt resuscitation if the patient’s heart stops beating (cardiac arrest) or if they stop breathing (respiratory arrest).

    1. In the Hospital Setting:

      • Hospital DNR Order: Within a hospital, a DNR order signifies that no life-saving measures will be initiated if the patient experiences cardiac or respiratory arrest.

      • Allow Natural Death (AND) Order: DNR orders are sometimes referred to as “Allow Natural Death” (AND) orders in hospitals, emphasizing the acceptance of natural death as the outcome.

      • Patient Request: While hospitalized, patients who are capacitated can request a DNR order from their physician.

      • Hospital-Specific DNR: It’s important to note that some hospitals may require a new DNR order to be issued with each hospital admission, even if a patient has a DNR order from a previous admission.

      • Hospital-Setting Limitation: A standard hospital DNR order is typically only applicable within the hospital setting. It does not automatically extend to care provided outside the hospital.

    2. Outside the Hospital Setting:

      • Out-of-Hospital DNR/DNAR: Some jurisdictions have established advance directives specifically designed for use outside of a hospital, such as:

        • Do Not Attempt Resuscitation (DNAR) order

        • Special Do Not Resuscitate (DNR) order

      • Emergency Medical Services (EMS) Use: These out-of-hospital DNR orders are specifically intended for use by Emergency Medical Service (EMS) teams, such as paramedics and ambulance personnel.

      • Pre-Hospital Refusal of Resuscitation: They allow patients to refuse full resuscitation efforts in advance, even if EMS is called to their location.

      • Dual Signature Requirement: A valid out-of-hospital DNR order typically requires the signature of both the patient (or their legal representative) and their physician to be legally recognized and honored by EMS providers.

Physician Orders for Life-Sustaining Treatment (POLST)
  • POLST vs. Advance Directive: A Physician Orders for Life-Sustaining Treatment (POLST) form is not technically an advance directive in the same way as a living will or healthcare power of attorney. Instead, it is a distinct type of document.

  • Medical Orders: POLST is a set of specific medical orders, documented on a standardized form, that a seriously ill person can complete in consultation with their physician.

  • Physician Signature: A POLST form must be signed by the patient’s physician to be valid medical orders.

  • Portability Across Settings: The completed and signed POLST form is designed to be portable and travel with the patient across various healthcare settings, including:

    • Home

    • Hospitals

    • Nursing homes

    • Ambulance transport

    • Other healthcare facilities

  • Emergency Personnel Obligation: Emergency personnel, such as paramedics and emergency room physicians, are legally and ethically obligated to follow the medical orders documented on a valid POLST form.

  • Absence of POLST Implication: Without a POLST form in place, emergency care staff are typically trained and protocol-driven to provide all possible medical treatments aimed at sustaining life, unless there is a valid DNR order or other clear indication to withhold treatment.

Pregnancy Considerations in Advance Directives
  • Childbearing Age Women: If a woman completing an advance directive is of childbearing age, it is crucial for her to clearly state her preferences and decisions regarding healthcare during pregnancy. This is especially important in case of unforeseen medical circumstances that may arise during pregnancy.

  • Healthcare Provider Discretion: Whether healthcare providers will ultimately honor a pregnant woman’s advance directive decisions can be complex and depends on multiple factors, including:

    • The specific medical risks to both the mother and the fetus.

    • The gestational stage of the pregnancy (e.g., first, second, or third trimester).

    • The ethical and legal policies of the doctors and healthcare facilities involved in the woman’s care.

  • Viability Threshold: Generally, if a woman is in the second or third trimester of pregnancy, when fetal viability outside the womb is a significant consideration, healthcare providers often have a strong ethical and legal inclination to provide necessary medical care aimed at preserving the lives of both the mother and the fetus, potentially overriding some aspects of the mother’s advance directive in extreme situations. This is a complex ethical and legal area with varying interpretations and practices.

Organ and Tissue Donation Instructions

  • Inclusion in Advance Directives: Instructions and preferences regarding organ and tissue donation after death can be formally included within an individual’s advance directive documents.

  • Organ Donor Cards: Many jurisdictions also offer separate organ donor cards as a simplified means for individuals to legally document their wish to be an organ donor.

Note on Age and Mental Health Directives

  • Focus on Older Adults: While advance directives are often associated with and primarily utilized by older adults due to end-of-life planning needs, it’s crucial to recognize that:

  • Planning at Any Age: It is never too soon to engage in advance care planning, regardless of age. Unexpected medical emergencies can occur at any stage of life, making advance directives relevant for adults of all ages.

  • Mental Health Care Directives: For individuals with concerns about potential future mental illness or serious mental incapacity, a specific type of advance directive known as a mental health care directive or psychiatric advance directive can be particularly valuable. These directives allow individuals to outline their preferences for mental health treatment and care in the event they become unable to make those decisions due to mental health conditions.

Advantages of Advance Directives

Advance directives offer numerous benefits for patients, families, and healthcare providers:

  1. Clear Expression of Wishes: Advance directives provide a straightforward and unambiguous mechanism for individuals to communicate their healthcare wishes in advance, ensuring their preferences are known and documented in case of future incapacity.

  2. Empowerment of Proxy Decision-Maker: These documents enable individuals to appoint a trusted person (healthcare agent) to make healthcare decisions on their behalf, providing a designated decision-maker who understands their values and preferences.

  3. Reduced Stress for Families and Providers: Creating an advance directive proactively reduces potential stress and conflict for both family members and healthcare professionals when difficult end-of-life decisions need to be made, as the patient’s wishes are already documented and legally recognized.

  4. Effective Guidance in Hospice Care: Advance directives provide valuable guidance for medical treatment throughout a patient’s hospice care journey, ensuring care aligns with their values and preferences, especially regarding comfort and quality of life.

  5. Patient Autonomy and Control: Advance directives empower patients to communicate their preferences and healthcare choices directly to healthcare providers while they still have the capacity to do so, upholding patient autonomy and self-determination.

  6. Avoidance of Unnecessary Pain: By clearly stating wishes regarding medical procedures and interventions, patients can help avoid unnecessary pain and suffering at the end of life, ensuring their comfort is prioritized.

  7. Prevention of Unwanted Hospitalization: Advance directives facilitate patient choice regarding the location of end-of-life care, helping patients avoid unwanted hospitalization by documenting their preferences for care settings such as hospice facilities or their own home, if desired and feasible.

How Nurses Can Assist Patients in Preparing Advance Directives

Nurses play a crucial role in facilitating advance care planning and assisting patients in preparing advance directives. Key nursing actions include:

  1. Needs Assessment: Assess and identify patients who may benefit from having an advance directive, considering factors such as age, health status, and expressed concerns about future healthcare decisions.

  2. Information Provision: Inform patients about the purpose, benefits, and importance of advance directives. Provide clear and accessible information to educate patients about their rights and options.

  3. Process Guidance: Provide necessary information and step-by-step guidance to patients regarding the process of writing an advance directive, addressing common misconceptions and concerns. This includes:

    • No Lawyer Requirement: Emphasize that a lawyer is not legally required to prepare a valid advance directive, making it more accessible.

    • Physician and Loved Ones Notification: Encourage patients to inform their physician and loved ones about their specific requests and the existence of their advance directive.

    • Healthcare Agent Selection Assistance: Assist the patient in carefully considering and appointing a healthcare agent who:

      • Understands their values and beliefs.

      • Is someone they trust implicitly to make decisions in their best interest.

    • End-of-Life Care Preferences Discussion: Facilitate conversations with patients about their preferences for end-of-life care, including:

      • Desire to stay in hospice care.

      • Preference to receive care at home if feasible.

    • Witness Signature Clarification: Clarify that advance directives can become legally official with the signatures of two adult witnesses who are not named in the document, without requiring a notary public or attorney, simplifying the process.

    • Physician Record Inclusion: Advise patients to provide the completed advance directive document to their physician for inclusion in their official medical record, ensuring it is readily accessible to the healthcare team.

    • Document Review Recommendation: Suggest that patients have someone they trust review the completed documents to ensure they are filled out correctly and accurately reflect their wishes.

    • Instruction Adherence: Stress the importance of carefully reading and strictly following all instructions provided with the advance directive forms to ensure all necessary information is included and proper witnessing procedures are followed.

    • Photocopy Recommendation: Recommend that patients make multiple photocopies of the completed advance directive documents for distribution to relevant parties.

    • Secure and Accessible Storage: Advise patients to keep the original advance directive documents in a safe yet easily accessible place where they can be readily retrieved when needed. Inform patients to notify others about the location of the original documents, and suggest noting the location on photocopies for easy reference.

    • Safe Deposit Box Caution: Caution patients against storing original advance directives in a safe deposit box, as these boxes may not be easily accessible when needed for healthcare decisions, especially in emergency situations.