End-of-Life Planning and Advance Directives

Overview

Death is the only certainty of human life, yet modern societies have become remarkably poor at preparing for it. The medicalization of dying — the transformation of death from a communal, spiritual, and familial event into a hospital-based medical procedure — has created a situation where the majority of people die in ways they would not have chosen: in institutional settings, connected to machines, receiving aggressive interventions that prolong the process of dying without preserving the quality of life, often without having expressed their wishes to family or physicians, and frequently after spending their final weeks or months in environments that are efficient for medical care but impoverished for human connection, comfort, and meaning.

Advance care planning (ACP) is the process by which individuals clarify their values, understand the realistic outcomes of various medical interventions, and communicate their preferences for end-of-life care to their families and healthcare providers through conversation and legal documentation. When done well, ACP reduces the burden of decision-making on family members, decreases unwanted aggressive interventions, improves the alignment between patients’ wishes and the care they receive, and — perhaps most importantly — opens the conversation about death that most families avoid until crisis forces it upon them.

This article examines the practical and legal components of advance care planning (advance directives, POLST, and the Five Wishes document), the cultural dimensions of death and dying with particular attention to Vietnamese traditions, the distinction between hospice and palliative care, and the art of having the conversation — the practical skills for broaching end-of-life topics with aging parents, patients, and loved ones.

Advance Care Planning: The Framework

What Advance Care Planning Is

Advance care planning is not a single document or a single conversation — it is an ongoing process of reflection, communication, and documentation that ideally begins well before a health crisis and continues throughout the trajectory of aging and illness. Effective ACP involves:

1. Values clarification: What makes life worth living for this person? What conditions would they find unacceptable? What matters most — length of life, quality of life, being with family, maintaining independence, freedom from pain?

2. Education about options: Understanding what CPR, mechanical ventilation, artificial nutrition, dialysis, and other interventions actually involve — their realistic outcomes in different clinical scenarios, not idealized media representations. (CPR success rates in the frail elderly are approximately 2-5% for out-of-hospital arrest, dramatically lower than the 67% survival rate depicted in television medical dramas.)

3. Decision-making authority: Designating a healthcare proxy or durable power of attorney for healthcare — a trusted person authorized to make medical decisions when the patient cannot speak for themselves.

4. Communication: Sharing values and preferences with family members, the designated proxy, and healthcare providers through direct conversation (not merely signing documents that are filed away).

5. Documentation: Completing legal documents that translate values and wishes into actionable medical orders.

Advance Directives

An advance directive is a legal document that specifies a person’s wishes for medical care in the event they become unable to communicate. The two primary types:

Living Will: A document that states the types of medical treatments a person does or does not want under specific conditions (typically terminal illness, permanent unconsciousness, or end-stage irreversible conditions). A living will might state: “If I am in a terminal condition with no reasonable expectation of recovery, I do not want CPR, mechanical ventilation, or artificial nutrition/hydration. I do want comfort measures including pain management.”

Durable Power of Attorney for Healthcare (Healthcare Proxy): A document that designates a specific person to make healthcare decisions on the patient’s behalf when the patient is unable to do so. This is often considered more important than a living will because no document can anticipate every clinical scenario — a trusted person who understands the patient’s values can apply those values flexibly to unanticipated situations.

Both documents must be completed while the person has decisional capacity (the ability to understand the information, appreciate its relevance to their situation, reason about options, and communicate a choice). They can be revoked or changed at any time while the person retains capacity. Requirements vary by state/jurisdiction but generally require witnessing and/or notarization.

POLST: Physician Orders for Life-Sustaining Treatment

Purpose and Function

The POLST (known in some states as MOLST, POST, or COLST) is a medical order form — distinct from an advance directive — that translates patient preferences into actionable medical orders that are immediately implementable by healthcare providers, including emergency medical services (EMS). While an advance directive is a planning document for future scenarios, a POLST is a clinical order for the present.

POLST forms are typically completed for individuals with serious illness or frailty whose life expectancy is measured in years or less. The form addresses:

• CPR: Full attempt at resuscitation vs. Do Not Attempt Resuscitation (DNAR)
• Medical interventions: Full treatment (including intubation, ICU) vs. selective treatment (hospitalization but no intubation) vs. comfort-focused treatment only
• Artificially administered nutrition: Long-term tube feeding vs. trial period vs. no artificial nutrition

The critical advantage of POLST over advance directives is portability and enforceability: POLST forms are printed on brightly colored paper, kept in a visible location (e.g., on the refrigerator), and are recognized by EMS personnel as valid medical orders. An advance directive, by contrast, may be filed in a lawyer’s office and unavailable during a 911 call.

When to Complete POLST

POLST is appropriate when:

• The person has a serious life-limiting illness
• The person is frail with declining function
• The person or surrogate has decided on specific treatment preferences
• The person resides in a long-term care facility

POLST is not appropriate for healthy adults planning for the distant future — advance directives serve that function.

Five Wishes

An Accessible Alternative

Five Wishes, created by Jim Towey and originally developed for the Aging with Dignity organization, is an advance directive document designed to be accessible, emotionally meaningful, and comprehensive in ways that traditional legal forms are not. It addresses not only medical preferences but also personal, emotional, and spiritual wishes for end-of-life care. The five wishes:

1. The Person I Want to Make Care Decisions for Me When I Can’t: Healthcare proxy designation

2. The Kind of Medical Treatment I Want or Don’t Want: Specific preferences regarding life-support, CPR, dialysis, tube feeding, ventilators, surgery, blood transfusions, diagnostic testing, and antibiotics under various conditions

3. How Comfortable I Want to Be: Pain management preferences, physical comfort measures (mouth care, positioning, bathing), environmental preferences (music, lighting), and the wish to be kept clean and presentable

4. How I Want People to Treat Me: Preferences for human contact (being held, spoken to, read to), privacy, presence of loved ones, spiritual support (prayer, ritual, visits from spiritual leaders), and dignity preservation

5. What I Want My Loved Ones to Know: Personal messages, expressions of forgiveness, gratitude, love, and guidance for how to be remembered

Five Wishes is legally valid as an advance directive in most U.S. states and has been translated into over 30 languages. Its strength is that it opens conversations about values and meaning that purely medical documents do not address.

Cultural Considerations: Vietnamese Traditions Around Death

The Spiritual Framework

Vietnamese culture, shaped by the interweaving of Buddhism, Confucianism, Taoism, and indigenous folk religion, has a rich and complex relationship with death that profoundly influences end-of-life decision-making.

Ancestor veneration (thờ cúng tổ tiên): The central spiritual practice of Vietnamese life, maintaining connection between the living and the dead through daily offerings, prayers, and periodic ceremonies at the family altar. The dead are not gone — they continue to influence family fortune and require ongoing attention and nourishment. This framework means that death is not an ending but a transition from one state of existence to another, and the manner of dying, the funeral rituals, and the ongoing veneration practices all influence the ancestor’s spiritual wellbeing and the family’s fortune.

Buddhist influences: The Buddhist understanding of death as part of the cycle of birth, death, and rebirth (luân hồi) provides a framework for accepting death as natural and potentially liberating. Buddhist practices at the time of death — chanting sutras, maintaining a peaceful environment, guiding the dying person’s consciousness — are widely practiced even among Vietnamese who do not identify as formally Buddhist.

Confucian obligations: Hiếu (filial piety) extends through and beyond death. The quality of care provided to the dying parent, the appropriateness of the funeral, and the faithfulness of ongoing veneration all reflect on the children’s moral character.

Implications for Advance Care Planning

Vietnamese cultural values create specific dynamics in end-of-life planning:

• Family-centered decision-making: While Western bioethics emphasizes individual autonomy and informed consent, Vietnamese families often make healthcare decisions collectively, with the eldest son or family patriarch taking the lead. The concept of individual advance directives may conflict with this collective model.

• Reluctance to discuss death: In Vietnamese culture, directly discussing death is often considered taboo — it is feared that talking about death may invite it, bring bad luck, or cause emotional distress to the elder. This creates a barrier to advance care planning conversations.

• Preference for hope: Family members may request that terminal diagnoses not be disclosed to the patient, viewing protection from bad news as an act of love. This conflicts with Western medical ethics’ emphasis on truth-telling but reflects a genuine cultural value of emotional protection.

• Full treatment expectations: The intensity of treatment may be seen as an expression of hiếu — withdrawing life support or declining aggressive treatment may feel like abandoning one’s duty to the parent. “Doing everything possible” is often the default expectation.

• Death at home: Traditional Vietnamese preference is for the elder to die at home, surrounded by family, with appropriate spiritual rituals. Hospital death is often considered unfavorable, and in some traditions, a person who dies away from home may have difficulty finding their way as a spirit.

Culturally Sensitive Approach

For clinicians serving Vietnamese patients and families:

• Engage the family system (not just the patient) in advance care planning discussions
• Approach the topic indirectly and gradually, using the family’s cultural framework rather than imposing Western bioethical concepts
• Respect the family’s role in decision-making while ensuring the patient’s voice is heard
• Frame comfort-focused care not as “giving up” but as providing the best possible care — an expression of hiếu through comfort rather than through technological intervention
• Involve Buddhist monks, community leaders, or spiritual advisors who can provide culturally resonant support
• Accommodate traditional practices (altar, incense, chanting, particular food offerings) within the clinical setting to the extent possible
• Understand that the funeral and veneration practices are as important to the family as the medical care and should be planned with the same seriousness

Hospice vs. Palliative Care

Palliative Care

Palliative care is a medical specialty focused on relief of suffering and improvement of quality of life for people with serious illness — at any stage of illness, alongside curative treatment. Palliative care addresses:

• Pain and symptom management
• Psychological and spiritual distress
• Care coordination and communication
• Advance care planning support
• Family support and bereavement

The critical point: palliative care is not “giving up” and is not restricted to the dying. A cancer patient receiving chemotherapy with curative intent can simultaneously receive palliative care for pain management, nausea, and psychological support. Research consistently shows that early palliative care integration improves both quality of life and, paradoxically, survival in serious illness. Temel et al. (2010) demonstrated that lung cancer patients randomized to early palliative care had better quality of life, less depression, less aggressive end-of-life care, and lived approximately 2.7 months longer than those receiving standard oncology care alone.

Hospice

Hospice is a model of care for individuals with terminal illness and a life expectancy of six months or less (if the disease follows its usual course), who have chosen to focus on comfort rather than cure. In the U.S., the Medicare Hospice Benefit covers:

• Skilled nursing visits
• Physician services and medical direction
• Medical social work
• Spiritual counseling
• Home health aide services
• Medications related to the terminal diagnosis
• Medical equipment and supplies
• Bereavement support for the family

Most hospice care (approximately 70%) is delivered at home, allowing the dying person to remain in familiar surroundings with family. Hospice can also be provided in dedicated hospice facilities, nursing homes, or hospitals.

The Gap Between Them

Many people misunderstand hospice as “waiting to die” and palliative care as “not real medicine.” Both misconceptions prevent people from accessing services that would significantly improve their experience. Education — for both clinicians and the public — is essential. The language used matters: framing hospice as “choosing comfort, dignity, and quality of life” rather than “stopping treatment” can reduce resistance.

Having the Conversation

Why It’s Difficult

End-of-life conversations are among the most difficult in human experience, resisted by patients, families, and clinicians alike:

• Death denial: The fundamental human reluctance to confront mortality
• Fear of upsetting the patient: Family members (and clinicians) fear that discussing death will cause despair
• Uncertainty: Prognostic uncertainty makes it difficult to identify the “right” time for the conversation
• Medical culture: Medical training emphasizes fixing, curing, and fighting disease — conversations about dying may feel like failure
• Cultural taboos: In many cultures (including Vietnamese, Chinese, and many others), directly discussing death is considered disrespectful or inauspicious

The Serious Illness Conversation Guide

Ariadne Labs (led by Atul Gawande, author of Being Mortal) developed the Serious Illness Conversation Guide, a structured framework for clinicians that has been validated to improve the quality and frequency of end-of-life conversations:

1. Set up: “I’d like to talk about what is ahead with your illness and do some thinking in advance about what is important to you.”
2. Assess understanding: “What is your understanding of where things are with your illness?”
3. Preferences for information: “How much information about what is likely to be ahead would you like from me?”
4. Share prognosis: Using language that conveys both hope and realism: “I want to hope for the best and prepare for the rest.”
5. Explore key topics:
   • Goals: “If your health situation worsens, what is most important to you?”
   • Fears: “What are you most afraid of?”
   • Function: “What abilities are so critical to you that you can’t imagine living without them?”
   • Trade-offs: “How much are you willing to go through for the possibility of more time?”
   • Family: “How much does your family know about your priorities and wishes?”
6. Close: Summarize what you’ve heard, make a recommendation, check for alignment, and document the conversation.

For Family Members

For adult children facing the conversation with aging parents:

• Choose a calm, private moment (not during a health crisis)
• Use a natural opening (a friend’s illness, a news story, a routine medical visit)
• Start with your own vulnerability: “I want to make sure I know how to take care of you the way you’d want”
• Ask about values before asking about medical specifics: “What makes a good day for you?” “What would you miss most if you couldn’t do it?”
• Listen more than talk
• Accept that one conversation is never enough — this is an ongoing process
• Document what you learn and share it with other family members and the healthcare team

Clinical and Practical Applications

For clinicians, advance care planning should be integrated into routine care for all adults over 65 and all patients with serious illness:

1. Normalize the conversation: Frame ACP as routine preventive care, not as a response to bad news
2. Document and communicate: Ensure that ACP conversations are documented in the medical record and that advance directives are accessible in the electronic health record
3. Revisit regularly: ACP preferences change over time and should be reassessed at major health transitions (new diagnosis, hospitalization, functional decline)
4. Train the team: Nurses, social workers, chaplains, and medical assistants can all participate in ACP conversations; it need not rest solely on the physician
5. Engage the family: Include family members (with patient permission) in ACP conversations, especially in cultures where family-centered decision-making is the norm
6. Respect cultural differences: Adapt the ACP process to the patient’s cultural context rather than imposing a one-size-fits-all approach

Four Directions Integration

• Serpent (Physical/Body): End-of-life planning addresses the body directly: What interventions will this body receive? What physical experiences will be prioritized (comfort, pain relief, dignity) or tolerated (invasive procedures, ICU stays)? The physical reality of dying — the body’s gradual release of function, the experience of pain and breathlessness, the final cessation of heartbeat and breath — is the Serpent’s domain. Advance care planning ensures that the body is treated with the respect and care it deserves during its final passage.

• Jaguar (Emotional/Heart): The emotional dimension of end-of-life planning is its most challenging and most important aspect. Having the conversation requires emotional courage — from the patient who must confront their own mortality, from the family who must face the loss of someone they love, and from the clinician who must deliver unwelcome truths with compassion. The Five Wishes document’s inclusion of personal messages, expressions of love, and requests for how to be treated reflects the understanding that the emotional dimensions of dying are as important as the medical ones.

• Hummingbird (Soul/Mind): At the soul level, advance care planning is an act of meaning-making — the clarification of what matters most, the assertion of values in the face of existential uncertainty, the conscious engagement with the question “How do I want to live — and how do I want to die?” The process of articulating one’s wishes is itself a form of soul work, requiring the individual to reflect on their deepest values and communicate them to others.

• Eagle (Spirit): Death, in virtually all spiritual traditions, is not an ending but a transition — the spirit’s passage from one state of being to another. Vietnamese ancestor veneration, Buddhist understanding of rebirth, Christian hope of resurrection, and indigenous traditions of spirit journey all frame death within a spiritual context that gives it meaning. End-of-life planning that attends to the spiritual dimension — ensuring access to spiritual practices, ritual, community, and the presence of spiritual companions at the time of death — honors the full reality of what dying is.

Cross-Disciplinary Connections

End-of-life planning connects medical ethics (autonomy, beneficence, non-maleficence), law (advance directives, healthcare proxy designation), palliative medicine, geriatrics, social work, chaplaincy, psychology (death anxiety, grief theory), cultural anthropology (cross-cultural death practices), and spiritual care. The hospice movement’s philosophical roots in Dame Cicely Saunders’ concept of “total pain” (physical, emotional, social, and spiritual suffering) provide a holistic framework. Atul Gawande’s Being Mortal has brought the conversation into mainstream culture. Vietnamese death rituals and ancestor veneration practices connect to family therapy, bereavement care, and the anthropology of death across cultures.

Key Takeaways

• Advance care planning is an ongoing process of values clarification, communication, and documentation — not a single document or conversation.
• The healthcare proxy (durable power of attorney for healthcare) is often more important than the living will because a trusted person can apply values to unanticipated situations.
• POLST translates patient preferences into actionable medical orders for those with serious illness; advance directives plan for future scenarios.
• Five Wishes addresses emotional, personal, and spiritual dimensions that traditional legal documents omit.
• Vietnamese cultural values (family-centered decision-making, death taboo, ancestor veneration, hiếu) create specific dynamics requiring culturally sensitive approaches to ACP.
• Palliative care is for any stage of serious illness (concurrent with curative treatment); hospice is for the final phase focused on comfort.
• Having the conversation requires emotional courage and cultural sensitivity; the Serious Illness Conversation Guide provides a structured, validated framework.
• Early advance care planning reduces unwanted aggressive interventions, improves alignment between wishes and care received, and decreases family burden.

References and Further Reading

• Gawande, A. (2014). Being Mortal: Medicine and What Matters in the End. Metropolitan Books.
• Temel, J. S. et al. (2010). Early palliative care for patients with metastatic non-small-cell lung cancer. The New England Journal of Medicine, 363(8), 733-742.
• Bernacki, R. E. et al. (2019). Effect of the serious illness care program in outpatient oncology: A cluster randomized clinical trial. JAMA Internal Medicine, 179(6), 751-759.
• Towey, J. (2001). Five Wishes. Aging with Dignity.
• National POLST. (2019). POLST: Portable Medical Orders. polst.org.
• Sudore, R. L. et al. (2017). Defining advance care planning for adults: A consensus definition from a multidisciplinary Delphi panel. Journal of Pain and Symptom Management, 53(5), 821-832.
• Searight, H. R. & Gafford, J. (2005). Cultural diversity at the end of life: Issues and guidelines for family physicians. American Family Physician, 71(3), 515-522.
• Blackhall, L. J. et al. (1999). Ethnicity and attitudes towards life sustaining technology. Social Science & Medicine, 48(12), 1779-1789.