The Evolution of Person-Centered End-of-Life Care in the United States
Advance care planning is a critical component of healthcare in the United States, allowing individuals to voice their preferences for medical treatment before a crisis occurs. While traditional living wills and durable powers of attorney for healthcare focus heavily on clinical interventions, the "Five Wishes" document emerged as a more holistic alternative. Created by the non-profit organization Aging with Dignity, this document integrates medical, personal, emotional, and spiritual needs into a single framework.
Since its introduction in the late 1990s, Five Wishes has become one of the most widely used advance directive tools in the country. It is designed to be accessible to the general public, using plain language rather than dense legal or medical jargon. This accessibility encourages families to engage in difficult conversations about end-of-life care, ensuring that an individual's dignity is maintained throughout the final stages of life.
The Legal Framework of Five Wishes
The Five Wishes document serves as a legal advance directive in many parts of the United States. Under the Patient Self-Determination Act (PSDA) of 1990, healthcare providers receiving federal funding (such as Medicare and Medicaid) are required to inform patients of their right to make healthcare decisions and their right to accept or refuse medical treatment. Advance directives like Five Wishes are the primary vehicles for exercising these rights.
State-Specific Validity and Reciprocity
The legal standing of Five Wishes varies by jurisdiction. Currently, the document meets the legal requirements for an advance directive in 46 states and the District of Columbia. In these regions, the document satisfies the statutory criteria for designating a healthcare agent and outlining treatment preferences. However, even in the remaining four states (Indiana, Kansas, New Hampshire, and Ohio), the document can still be a valuable tool. In these jurisdictions, individuals often attach the Five Wishes document to their state-mandated forms to provide more detailed instructions to their physicians and families.
It is common practice for legal experts to recommend checking specific state statutes, as requirements for witnessing and notarization differ. For instance, some states require two witnesses, while others may require a notary public or prohibit certain individuals—such as healthcare providers or heirs—from serving as witnesses.
The Structure of the Five Wishes
The document is divided into five distinct sections, each addressing a specific facet of the end-of-life experience. These sections allow for a comprehensive approach that goes beyond the "yes or no" format of traditional medical forms.
Wish 1: The Person I Want to Make Care Decisions for Me
This section functions as a Durable Power of Attorney for Healthcare (also known as a Healthcare Proxy or Healthcare Agent). The individual appoints a "Health Care Agent"—someone they trust to make medical decisions if they become unable to do so themselves. It is standard practice to name an alternate agent in case the primary person is unavailable. The document outlines the scope of the agent's authority, which typically includes the power to grant or refuse consent for medical procedures and access medical records.
Wish 2: The Kind of Medical Treatment I Want or Don’t Want
This wish serves as a Living Will. It addresses specific medical interventions such as life-support systems, cardiopulmonary resuscitation (CPR), and artificial nutrition and hydration (tube feeding). The document provides space for the individual to define what "life-support" means to them and under what circumstances they would want it stopped, such as if they are in a permanent coma or have a terminal condition.
Wish 3: How Comfortable I Want to Be
A unique feature of Five Wishes is its focus on palliative and comfort care. This section allows individuals to specify their preferences for pain management. It often includes instructions regarding the use of pain medication, even if such medication might cause drowsiness or affect alertness. It also covers personal comforts, such as being kept clean, having cool cloths applied to the forehead, or receiving mouth care to prevent dryness.
Wish 4: How I Want People to Treat Me
This section focuses on the personal and emotional aspects of care. It allows the individual to state whether they wish to die at home, if they want someone to hold their hand, or if they wish to have prayers or religious texts read aloud. This section helps healthcare providers and family members understand the individual's definition of "dignity" and "respect," which can significantly reduce the emotional burden on caregivers.
Wish 5: What I Want My Loved Ones to Know
The final wish deals with matters of closure and legacy. It may include instructions for funeral or memorial arrangements, preferences for cremation or burial, and messages of forgiveness or love for family and friends. While these instructions may not always be legally binding in a medical sense, they provide essential guidance for survivors and help prevent familial disputes during the grieving process.
The Implementation Process: Best Practices
Completing the Five Wishes document is not a one-time event but a process of reflection and communication. Legal and medical professionals often emphasize several steps to ensure the document is effective when needed.
Discussion with Healthcare Providers
It is generally recommended that individuals discuss their Five Wishes with their primary care physician. Doctors can provide clarity on medical terms and help the individual understand the implications of their choices. Furthermore, once the document is completed, a copy should be placed in the individual’s permanent medical record to ensure that hospital staff are aware of its existence during an emergency.
Selecting and Preparing the Health Care Agent
The choice of a healthcare agent is perhaps the most significant decision in the Five Wishes process. Legal experts suggest choosing someone who is capable of making difficult decisions under pressure and who is willing to advocate for the individual’s wishes, even if they personally disagree with them. Detailed conversations between the individual and the agent are necessary to ensure the agent fully understands the nuances of the "wishes" expressed.
Formalizing the Document
To be legally valid, the Five Wishes document must be signed in the presence of witnesses or a notary, depending on state law. It is common for the document to include a section for the signatures of two witnesses who attest that the individual is of sound mind and acting of their own free will. Once signed and witnessed, the document is considered a legal expression of the individual’s intent.
Addressing Common Misconceptions
Several misconceptions surround advance directives like Five Wishes. One common myth is that the document is only for the elderly or the terminally ill. In reality, any adult over the age of 18 is encouraged to have an advance directive, as unexpected accidents or illnesses can occur at any stage of life.
Another misconception is that the document cannot be changed. Advance directives are "living" documents; they can be revoked or updated at any time as long as the individual remains mentally competent. Experts often suggest reviewing the document every few years or after major life events, such as a marriage, divorce, or a new medical diagnosis.
Conclusion: The Role of Five Wishes in Modern Healthcare
The Five Wishes document represents a shift toward more compassionate, patient-centered care in the United States. By addressing the physical, emotional, and spiritual needs of the individual, it provides a roadmap for end-of-life care that respects personal values. While it is a powerful legal tool, its greatest value often lies in the peace of mind it offers to both the individual and their loved ones, ensuring that the final chapter of life is handled with the dignity everyone deserves.
This article is for general informational purposes only and does not constitute legal advice. Laws vary by jurisdiction and are subject to change. If you require legal assistance, please consult a qualified attorney.