After reading this article, the nurse will be able to:
1. Understand the terminology used in advance directives that directly impact end-of-life patient care issues.
2. Discuss whether and how advance directives can be changed and any legal ramifications associated with these changes.
3. Summarize appropriate filing actions for advance directive documents.
You are the nurse on a busy geriatric medical-surgical nursing unit. Your 72-year-old patient, John, is dying from lung cancer. Many family members visit his bedside daily. When John was admitted to your unit a week ago, he did not have any legal papers identifying his wishes on do- not-resuscitate (DNR) status, power of attorney or organ donation.
After first broaching the subject with the patient, the physician initiated a conversation with John and his family about DNR orders. The family became upset, and the physician felt it was best to have a family conference the following day to discuss options more calmly. In the meantime, as the nurse, you have been asked many questions by the family members. They want to know why this is important at this point in time. John's wife states: "I simply cannot think about that now. It makes me think we are giving up on John, and that is something I will never do."
When the family conference takes place, John and the immediate family members (wife and children) are invited to ask questions. After a thorough discussion, John states: "I do not want to die." His wife states: "I want everything done for John. I do not want a DNR order." John's oldest child states, "Maybe it would be best to limit the activities that are done with dad." This prompts a cold stare from his mother. The meeting is adjourned with no DNR orders written. The medical and nursing teams fear the worst as John's condition declines rapidly. John progresses into a coma, and the medical team understands that all medical attempts to resuscitate would be futile. Following this sudden change in health, another family conference is called. But again, John's wife gives no approval for DNR orders.
As healthcare providers and advocates, it is common for nurses to confront this or similar situations. What can nurses do to help ease the fear of DNR orders when the patient's wishes are not known?
With advancements in healthcare, life is being prolonged-bringing forth a complex set of legal and ethical questions. This article discusses ethical concerns related to the dying process and the legal information nurses should know about it.
What Is an Advanced Directive?
The Patient Self-Determination Act was passed in 1990 to ensure that every patient coming into a hospital facility is asked about his or her wishes regarding resuscitation efforts. Since that time, our understanding of the importance of these documents has grown. An advance directive is a written or oral statement that describes a person's wishes for healthcare and treatment in the future. It provides information about what type of medical care should be performed; who the designated health care surrogate is; if a living will has been written; and if organ donation is planned. Advanced directives include living wills, DNR orders (sometimes written as Do Not Attempt Cardiopulmonary Resuscitation) and instructions for withholding or withdrawing treatments. This written or oral statement must be witnessed to be valid.
As an example, Florida statute declares that every competent person has the fundamental right to determine his or her healthcare. The statute defines this right as "subject to certain interests of society, such as the protection of human life and the preservation of ethical standards in the medical profession."1 Many states have similar statutes.
In the case above, it would have been best for John to make his wishes known before illness so that the family would not have the burden of trying to decide what to do. The best scenario would have been to have an advanced directive with DNR decisions, along with a power of attorney, to help guide care in John's final days. This would have decreased the hardship on his family members and ensured that John's wishes were carried out. In addition, because family reaction suggested misconceptions about DNR orders, it would have been best to start the family conference with this information.
What is DNR and Power of Attorney?
A DNR is a written order that informs healthcare professionals whether cardiopulmonary resuscitation (CPR) should occur if the patient stops breathing. The document must be signed by a healthcare provider recognized by the state to be valid. It may describe to what extent CPR should be done. For example, a "full code" means every attempt to restore life should be performed. A "no code" means the person will be allowed to die without life-saving measures such as CPR, emergency drug administration, etc. In some cases a no code is misinterpreted by family members and patients. They may think it means that nothing will be done. This is far from accurate. A no code includes comfort measures such as pain management, personal hygiene, and possibly medications such as antibiotics.
"Chemical codes" allow the use of medications to try and restart heart function but do not include CPR. Patients can specify which treatments they want-such as hydration, intravenous fluids or nutrition-but these specifics need to be clearly written. While family members may think withholding nutrition or fluids from a dying person will hasten their death, healthcare providers (usually nurses) need to explain the consequences of providing these treatments. When a person is dying, his or her metabolism slows dramatically and organ failure begins. When nutrition is provided to someone with a decreased metabolism, the person may experience nausea and high stomach residual, potentially leading to vomiting, aspiration or simply being more uncomfortable. Administering fluids through intravenous routes can cause added edema and fluid overload to pulmonary and cardiac status, making death extremely uncomfortable.
Sometimes, the term "slow code" may be used. This indicates everything will be done, but at a slower pace. All healthcare providers must realize that this type of code is not only improper and unethical; it is illegal.
The Power of Attorney (PoA) is a legal document naming someone (typically called the "agent") to provide medical decisions based on previous discussions about the patient's decisions. The PoA goes into effect when the patient is no longer able to provide information about his or her wishes. The agent abides by the advance directives and cannot go against what was written by the patient. The agent may be asked certain things that were not included in the advance directives (legal documents cannot cover every situation). If for some reason the advance directives are considered invalid (i.e., not signed, were signed under duress or were not witnessed), the agent may have to make adjustments.
Financial PoA documents allow a designated person to make financial decisions for the patient. A patient may designate the same person as medical PoA and financial PoA. When a patient does not, two people act on behalf of the patient, each focused on one aspect. The PoA for healthcare allows the designated person to make healthcare decisions based on the patient's wishes and can also allow the person to view the patient's medical records. In addition, the healthcare PoA can authorize medical treatment forms, select specific healthcare facilities, and choose providers. The PoA must show the document to the healthcare facility so it can be filed and legal decisions can be made appropriately.
The PoA for financial matters allows the person to make decisions about the patient's income and assets. The PoA can use the patient's monies to pay bills and even sell property. The PoA must present the document to a bank when moving monies from the patient's account.
The two types of PoAs are quite specific. Unless a person is named both healthcare and finance PoA, he or she cannot control both tasks. A lack of understanding about the distinction between these two types of PoAs can potentially lead to legal ramifications and family turmoil.2
A person who is incompetent or has the incapacity to make decisions can be served by a healthcare surrogate, power of attorney or proxy/guardian appointed by the state court. Legally, the terms incapacity and incompetent may also be applied to a deceased person and his or her ability to donate organs.
An advance directive can be amended or revoked at any time by dating and signing when changes have occurred, when prior documents have been physically destroyed by the patient or by another person in view of the patient, by voicing the intent to alter wishes, or if a change in the immediate family has occurred (i.e., death of a surrogate or dissolution of a marriage in which the spouse was the surrogate). The law also defines that a healthcare clinician shall not be legally at fault if unaware of these changes. Providers are only responsible for following revised instructions if they are aware of changes.
In rare cases, medical providers may refuse to comply with the written wishes of a patient when they deem those wishes medically inappropriate. For example, the provider may have an ethical question that must be reviewed by the facility's ethics committee before any action occurs. The provider may also determine it is necessary to transfer the patient to another facility that can carry out the wishes of the patient without ethical challenges. The best way to avoid this type of problem is to communicate effectively with patients to ensure everyone understands what is described in the advanced directives.3 Doing so can potentially avoid misunderstandings during a time of crisis.
Storage of Documents
Determining where to store an advance directive is an important decision. Most organizations recommend making photocopies and giving them to family, friends and/or clergy. Documents should be stored in a place that can be easily accessed, and in an area protected from possible theft or fire. The patient should inform friends and family where the documents are located. The patient's primary healthcare provider must have a copy on file in the patient's chart and be provided with any changes in the care plan. MedicAlert and U.S. Living Will Registry are two companies that store legal documents and prevent documents from being destroyed or lost.4
Natural Death Acts
Most states have replaced the term "living will" with "natural death act." The interchange of the terms "advance directive," "living will" and "natural death act" can create much confusion for patients, families and even healthcare providers. Natural death acts have been the focus of negative attention because they have been misinterpreted as allowing a physician to assist in a person's planned suicide or euthanasia. The United States does not recognize physician-assisted suicide. Only one country, the Netherlands, has been actively involved in providing lethal injections or other active forms of euthanasia to cause death to competent patients. People who oppose this act are concerned these deaths may have been involuntary. Regardless, people should have an active voice in their death, just as they had in living their life.5
A Physician Order for Life-Sustaining Treatment (POLST) is a legal document specifying what type of care patients want in an emergency medical situation. It is for people with illnesses from which recovery is not expected, and it complements the advance directive. The form contains three sections that directly review CPR status, orders for emergency cardiac arrest (full or limited code vs comfort treatment only) and whether artificial nutrition will be given. Treatments such as administering blood, surgical procedures, invasive testing, dialysis, or other invasive treatments are also documented on this form.
POLST forms can vary state to state. They are usually pink, must be signed by a medical professional (physician, nurse practitioner, physician assistant, social worker or others specified) and stays with the patient as he or she is transferred in and out of facilities. The patient, agent or healthcare surrogate can be assigned to initiate the POLST form if no advanced directives have been recorded. Visit the link at reference 6 to determine whether your state has POLST forms available and if so, what they include.6
It is often difficult to think about the death of an infant, child or other minor. Choices in death, as well as choices in life, should be discussed with young people. However, limited information on pediatric advance directives exists. Minors with chronic illnesses usually understand their life expectancy and thus should receive information about medical treatments and be allowed to make their wishes known. While many young people have parents present to make legal decisions, this may not always be the case. In such instances, a healthcare surrogate or court-appointed guardian may be required. Legally, a person must be 18 years old to sign documents, but regardless of age, he or she should be actively involved in personal medical decisions and allowed to have their desires acknowledged.
Training for Healthcare Professionals
Training all healthcare providers on advance directives should be part of our medical and nursing repertoire. Physicians, nurses, NPs, PAs, case managers, clinical nurse leaders, social workers, chaplains, and ethics committee members need renewed education in this area. Clinicians need to be aware of variances in state laws, as well as policies and procedures in the institution where they practice. Many organizations provide continuing education units to ensure that nurses remain confident in their ability to start conversations about advance directives with all patients.
Nurses are with patients for extended periods of time each workday. Because of their close proximity, they are often the people whom patients turn to for answers about advance directives. Nurses need to remain aware of the legal issues surrounding these documents and understand that laws may vary from state to state. Upon admission to a facility, nurses must inquire about advance directives and keep all copies in the medical record. They should ensure the documents are signed, witnessed and/or notarized (if required).
Nurses should be comfortable discussing death and dying while treating all patients with respect. Nurses should understand the concept of dying a good death. This may be influenced by cultural factors, and it requires a personal awareness of a nurse's own feelings about the dying process. By encouraging patients and family to discuss options for advanced planning, you will be able to help provide the patient with quality time with his or her family and loved ones near the time of death.
The nurse's goal should be to honor the patient, promote quality time with the family, and support the last act of life, which is a peaceful death. Having advance directives helps us achieve this.
Marquetta Flaugher is a dually certified family and psychiatric-mental health nurse practitioner. She practices in the sleep disorders clinic at Bay Pines Veterans Affairs Medical Center and is a member of the adjunct nursing faculty at St. Petersburg College in St. Petersburg, Fla. She has completed a disclosure statement and reports no relationships related to this article.
1. Health Care Advance Directives, FL Stat. Chapter 765. http://www.leg.state.fl.us/statutes/index.cfm?App_mode=Display_Statute&Search_String=&URL=0700-0799/0765/Sections/0765.102.html
2. FindLaw. The Definition of Power of Attorney, Living Will and Advance Directives. http://estate.findlaw.com/living-will/the-definition-of-power-of-attorney-living-will-and-advance.html
3. Commission of Law and Agency. Myths and facts about healthcare advance directives. http://www.americanbar.org/content/dam/aba/migrated/Commissions/myths_fact_hc_ad.authcheckdam.pdf
4. National Hospice and Palliative Care Organization. Storing Your Advance Directives. http://www.caringinfo.org/i4a/pages/index.cfm?pageid=3288
5. Encyclopedia of Death and Dying. Natural Death Acts. http://www.deathreference.com/Me-Nu/Natural-Death-Acts.html
6. Everplans. State-by-State POLST Forms. https://www.everplans.com/articles/state-by-state-polst-forms