Learning Objectives
By the end of this section, you will be able to:
- Describe legal foundations of death and dying
- Explain ethical foundations of death and dying
- Identify nursing considerations for after death
Throughout the process of death and dying, nurses provide direct care for the patient and family. In addition to this hands-on care, nurses must also consider the legal and ethical aspects of death and dying. These aspects are a crucial guide to advance planning, making treatment decisions, and educating patients with respect to death. Nurses must recognize the role that cultural beliefs play in ethical and sometimes legal end-of-life care. In particular, cultural values guide decisions regarding advance planning. Depending on the clinical setting, nurses may be required to care for the bodies of individuals after death. Cultural rituals surrounding death vary widely; the best action for nurses is to keep open communication and maintain an atmosphere of respect regardless of any personal opinions they may have of patient and family wishes.
Legal Foundations of Death and Dying
Legal considerations for nurses involve assisting patients in understanding, verbalizing, and documenting their wishes for care at the end of life. These legal documents are crucial whether a death is anticipated or sudden and whether a patient is old or young. Nurses are essential in providing education on advance planning and involving the family as appropriate.
Advance Planning
While not all deaths are anticipated, the eventuality of death is a fact. Nurses play a significant role in advance planning for that fact. Advance care planning helps patients achieve autonomy and comfort in knowing their wishes will be fulfilled regardless of their ability to articulate them in a given moment. It also helps healthcare providers offer personalized care to each patient and reduces decision fatigue and family worry. However, while advance planning is helpful from a legal standpoint and for families making hard decisions, it is not a requirement in any state.
Advance Directive
As individuals become more knowledgeable about medical procedures and practices, some want to ensure their wishes and desires with respect to death are known. This ensures that if the person ever becomes incapacitated, or unable to perform cognitive functions, or if they lose the ability to express themselves, their loved ones will know what they want. For this reason, a person might write an advance directives (also known as a living will), a written legal document that details specific interventions they want and do not want. For example, a person in the last stages of a terminal illness may not want to receive life-extending treatments. A living will can also name a healthcare proxy, a specific person appointed to make medical decisions if you cannot speak for yourself.
Encouraging patients to have advance directives is crucial at any age, but this potentially delicate conversation must be handled respectfully. People’s desire for—or resistance to—living wills and advance directives is often influenced by their religion, culture, and upbringing.
Link to Learning
Nurses have a unique role in facilitating education on advance planning with patients of all ages. Resources such as this advance directive template can help nurses support patients as they express their wishes about end-of-life care.
Physician Order for Life-Sustaining Treatment (POLST)
A physician order for life-sustaining treatment (POLST), also called a portable medical order, is a personal directive for medical care (Tark et al., 2019). A POLST must be upheld anywhere the patient is, whether at home, in the community, in a hospital, or a doctor’s office. POLST documents are reserved for individuals with terminal or progressive diseases and limited life expectancy. While any adult can create an advance directive that guides care in the event of accidents, emergencies, or unexpected health events, a POLST guides care during the last stages of life. Creating a POLST requires a detailed conversation with a trusted physician. The POLST can be created directly with a patient, but a healthcare proxy can also help create a POLST for individuals who cannot make these decisions for themselves. A POLST may include the following:
- Transportation wishes: Does the patient wish to be transported to a hospital for care in the event of emergency or a decline in health?
- Resuscitation wishes: Does the patient wish for full resuscitation or no resuscitation measures?
- Medical treatment wishes: Does the patient wish for medical treatments such as medications, fluids, or intubation in the event of an emergency or a decline in health?
- Disease-specific care: Does the patient wish for care related to specific diseases such as antibiotics for pneumonia or a urinary tract infection?
As a type of advance planning tool, POLSTs are optional; however, national standards are available for states to create standardized POLST recommendations and forms. Many states are creating standardized POLST forms for efficient and respectful end-of-life care.
Link to Learning
The National POLST Coalition maintains this website with information about POLSTs and advance planning in general, as well as sample forms.
Do Not Resuscitate (DNR)
A do not resuscitate (DNR) order is a narrow directive for care provided in the event of cardiac arrest. DNR does not mean the patient does not want any treatment for their condition (Vranick, 2022). Instead, it states that if they stop breathing or their heart stops beating, medical personnel such as providers and nurses are not to take steps to revive or resuscitate the patient. Generally, these steps include cardiopulmonary resuscitation (CPR) and intubation. DNR orders are often included in a POLST. Some advance directives also include a separate do not intubate (DNI) order, stating that if a person stops breathing, medical personnel such as providers and nurses are not to place an intubation tube.
Clinical Safety and Procedures (QSEN)
DNR
Facility requirements vary regarding how to document DNR orders. However, they are always created during conversations between a provider and a patient or patient representative. Ideally, advance directives are in place before any life-threatening medical event; that way, even if the patient becomes incapacitated, an authorized representative can make the decision as to whether to create a DNR order. Nurses and other healthcare providers must know the status of their patients with regard to DNR. Examples of ways to create an environment of safety regarding DNR include the following:
- Create color-coded wristbands.
- Make sure the DNR order is documented in the chart.
- Be aware of the DNR status of all patients in your care.
Allow Natural Death (AND)
The term allow natural death (AND) is similar to DNR; however, the focus of this directive relies on allowing a natural unfolding of the dying process rather than withholding treatments. Some researchers have proposed that AND is a superior term in that it guides providers in creating an atmosphere of comfort and ease during death (Fan et al., 2018). The concept behind AND is providing comfort and dignity at the end of life and avoiding measures to prolong the dying process or sustain life.
Comfort Measures Only
As you learned, comfort care is often a significant part of hospice and palliative care. It encompasses the following four areas:
- physical comfort
- mental and emotional comfort
- spiritual
- practical tasks
Comfort care only provides treatments that promote the comfort of the patient and family during the dying process. Comfort measures can be given whether or not a person has a DNR or AND order signed. Comfort care orders direct what treatments can and should be provided to maintain comfort during the last stages of life.
Comfort care measures provide pain control, relief from anxiety and agitation, support from spiritual leaders, and assistance with bodily functions and activities of daily living. Table 36.7 lists comfort care interventions for common end-of-life situations (National Institute on Aging, 2022).
| End-of-Life Situation | Nursing Intervention |
|---|---|
| Pain |
|
| Breathing problems |
|
| Skin irritation |
|
| Digestive problems |
|
| Temperature sensitivity |
|
| Fatigue |
|
| Emotional disturbance |
|
Unfolding Case Study
Unfolding Case Study #5: Part 8
Refer back to Unfolding Case Study #5: Part 7 for a review on the patient data. Mrs. Morales has been receiving hospice care for two months and is beginning to experience more severe fatigue and expresses her desire to “just get it over with already.” She has requested that her extended family come to see her and say their goodbyes. One of her friends is currently visiting and notices that Mrs. Morales has stopped breathing. The friend begins to panic and yells, “HELP! She’s not breathing! Someone start CPR now!”
Terminal Weaning
Removing or discontinuing life-sustaining treatments and procedures is referred to as terminal weaning, also known as terminal extubation. Most terminal weaning takes place in an intensive care unit (ICU) setting with the removal of ventilator tubes or other life-sustaining equipment. Terminal weaning occurs after a determination is made by providers that continued treatment will not improve or reverse the condition of the individual, and the intubation is only prolonging the dying process (Thellier et al., 2017). The patient’s family ultimately makes the decision based on the provider's recommendations and facts about the prognosis for ongoing life. The time between terminal weaning and death is typically very short. Terminal weaning occurs in the presence of providers and nurses to ensure the patient's comfort level is maximized and the family has adequate support.
Ethical Foundations of Death and Dying
Ethics in death and dying is a recurring topic in the medical community. It is also routinely addressed in legislation where national and state laws are set and often challenged based on varying ethical standards. As with any ethical conflict, considerations include autonomy (the right of independence), beneficence (to do good), nonmaleficence (to do no harm), and justice (fairness). Many of the preceding advance directives seek to ensure an ethical death in that quality of life is maximized and the decision made by others on behalf of a dying individual aligns with their values, beliefs, and cultural conditions. A nurse is ethically prohibited from administering medical aid in dying, but they must be informed and comfortable supporting patients and families in end-of-life situations.
Euthanasia
Helping a person fulfill their wish to die, euthanasia can be categorized as active euthanasia or passive euthanasia. An active euthanasia involves deliberately taking actions to end the life of a person who is suffering from a terminal illness or unbearable pain, such as administering a lethal dose of medication to someone who wishes to die. In some cases, a dying individual who is in pain or constant discomfort will ask this of a friend or family member as a way to speed up what they have already accepted as being inevitable. This can have lasting psychological effects, such as anxiety, depression, post-traumatic stress disorder (PTSD), guilt, resentment, and emotional trauma, on the individual or individuals asked to help.
A passive euthanasia refers to the withholding or withdrawal of medical treatment or life-sustaining measures with the intention of allowing a patient to die naturally. This can involve discontinuing interventions like mechanical ventilation, artificial nutrition and hydration, or other forms of life support. Passive euthanasia allows the natural progression of the underlying medical condition to take its course, ultimately leading to the patient’s death. It is typically carried out in accordance with the patient’s expressed wishes, advance directives, or the decision of their legal representative. This is different from terminal weaning in that with terminal weaning, the intent is not death but rather removal of life-prolonging treatments. The distinction between active and passive euthanasia lies in the active nature of the intervention; in passive euthanasia, treatment is not actively administered to prolong life. Laws and ethical considerations regarding passive euthanasia vary across jurisdictions.
Patient Conversations
Terminal Weaning vs. Euthanasia
Scenario: Elaine is a nurse caring for Roland in the ICU. Roland sustained a severe burn on his torso that required multiple grafting procedures. After he was moved to a rehab center, he developed pneumonia and was transferred to ICU for ventilator care. Marie is Roland’s sister and only living relative. The provider has just explained to her that Roland’s organ systems are failing, the ventilator is a life-sustaining treatment, and Roland is not expected to recover.
Nurse: Do you have questions about what the provider explained?
Patient’s sister: I am an authorized representative for Roland, but I feel that removing the life support is euthanasia. Is that legal?
Nurse: Removing life-sustaining treatment in a setting such as the ICU is termed “terminal weaning.” Terminal means life-limiting, and weaning means removing the support that is prolonging life. Active euthanasia refers to providing treatment to end someone’s life per their wishes and passive euthanasia refers to withholding treatments with the intent to end life. Does Roland have an advance directive?
Patient’s sister: Yes, but he did not specify whether he wanted ventilatory support. I just don’t know what to do.
Nurse: Is there a support person who could help you make the decision?
Patient’s sister: Yes, I’d like to speak with the chaplain to discuss this before deciding.
Nurse: I will put in an order for the chaplain to visit you and help you process the information and make a decision.
Voluntary Euthanasia
A voluntary euthanasia refers to helping someone fulfill their wish to die by acting in such a way as to help end that person’s life. The individual, who is usually experiencing a terminal illness or unbearable pain, makes a clear and voluntary request for assistance in hastening their death. This request may be expressed verbally, in writing, or through advance directive, and it reflects the person’s desire to have control over the circumstances of their death. An example of voluntary euthanasia would be a terminally ill cancer patient who, after exhausting all available treatment options and experiencing unmanageable pain and suffering, requests medical assistance to end their life peacefully and on their own terms. Another example could involve a person with a degenerative neurological condition, such as amyotrophic lateral sclerosis (ALS), who chooses to end their life before losing the ability to communicate or move independently. In both cases, the decision to pursue voluntary euthanasia is driven by the individual’s autonomy, dignity, and desire to avoid unnecessary suffering at the end of life.
Assisted Death and Aid in Dying
Medical aid in dying, or provider-assisted death, occurs when a provider prescribes how a person can end their life but does not directly act in the process. Unlike euthanasia, it is regulated by a set of laws and backed by legal authority. Provider-assisted death is permitted in the District of Columbia and several states, including Oregon, Hawaii, Vermont, Montana, Maine, Colorado, New Mexico, California, and Washington. It is also legal in the Netherlands, Switzerland, and Belgium. In regions where it is legally permitted and regulated, a qualified healthcare provider may prescribe medication, usually a lethal dose of barbiturates or opiates, at the request of a mentally competent, terminally ill patient. The patient has the autonomy to self-administer the medication when they choose, with the goal of bringing about a peaceful and controlled death.
The terminology and legal status surrounding assisted death vary across different jurisdictions, and the ethical, moral, and legal considerations of this practice continue to be subjects of debate and discussion. In the United States, a growing number of the population support provider-assisted death. In 1997, a U.S. Supreme Court ruling upheld states’ right to determine their laws on provider-assisted suicide despite efforts to limit providers’ ability to prescribe medications for their patients requesting the means to end their lives. The position of the Supreme Court is that the debate concerning the morals and ethics surrounding the right to die should be continued. As more of the population enters late adulthood, the emphasis on giving patients an active voice in determining certain aspects of their death is likely.
Palliative Sedation
The administration of pharmaceutical agents to reduce consciousness is known as palliative sedation (Cherny, 2024). These medications may be administered intravenously, subcutaneously, orally, or rectally. Palliative sedation is appropriate in the case of severe and intractable pain at the end of life, and it can be used in the ICU, inpatient hospice, inpatient general units, and at home, depending on the circumstance of each individual. Palliative sedation allows restfulness for the individual and reduces stress levels for the family (Cherny, 2024). Discomfort and pain in palliative care may result from the disease process itself or as a result of palliative treatments, procedures, or surgical interventions. However, palliative sedation is more than just administering pain relievers. Palliative sedation may also relieve emotional suffering, such as anxiety, and reduce physical discomfort, such as breathlessness or dyspnea. It can also alleviate symptoms of delirium and fatigue.
While both euthanasia and palliative sedation may use similar modalities, the distinction lies in the intention and the outcome. Palliative sedation intends to provide comfort and focuses on the ethical standards of beneficence and nonmaleficence . The outcome of palliative sedation is improved quality of life during the end-of-life period rather than inducing or hastening the process of death. In the case of palliative sedation, nurses may be carrying out orders to administer medication. Nurses need to assess their comfort level in providing care during this challenging time, as there is often a shift from delivering curative treatment to maintaining quality of life and providing dignity at the end of life.
Nursing Considerations for After Death
Nurses may encounter death in a variety of settings, including inpatient units, emergency rooms, at-home hospice care, and the scene of a violent crime or accident. After-death care involves caring for the deceased individual’s body, but generally the focus shifts to providing more intense care for the family.
Postmortem Care
The care provided for an individual immediately after death is called postmortem care. At this time, the body will experience expected changes, including a drop in temperature, color changes to the skin, and rigor mortis, the stiffening of the muscles in the body. The skin will develop passive euthanasia, a pale to greyish color of the skin that occurs shortly after death, with some areas turning purplish due to blood pooling in lower body parts due to gravity.
The task of postmortem care falls to the nurse in a hospital setting and possibly in a long-term care facility or home setting. Nurses must provide gentle care to the body to prevent tissue damage and preserve dignity; modesty and privacy are also important. Nurses should remove all IV lines that fall under their scope of practice (e.g., some facilities will allow peripheral IVs to be removed but not tunneled or large-bore lines) and remove indwelling tubes, such as nasogastric or urinary catheters. It is important to note that if an autopsy is planned, no lines or tubes should be removed. Nurses should also remove or replace any soiled linens and clothing, close the eyes, and gently cleanse any soiled parts of the body before family viewing. Documenting a postmortem assessment is essential, particularly in inpatient settings and for individuals who will have an autopsy performed. The facility will dictate the type and extent of the exam.
Postmortem care should also provide time for the family to view the body and say goodbyes; a private space for this is ideal. Nurses have an important duty in creating a peaceful space for the family to view the body. By removing IV lines, tubing, ventilators, pumps, and other machines, nurses can help the family focus on emotional needs. Cleaning the room of visible stains and body fluids and applying clean linens will go far in creating a space for families to begin their healing. As much as possible, the patient’s and their family’s cultural beliefs and wishes should guide postmortem care.
Link to Learning
This website will prepare you to care for individuals after they die and includes information relevant to care of the surviving family.
Organ Donation
The donation of organs or tissue that are removed from a person’s body and used for treatment in another person’s body or for research or other medical uses is known as organ donation. It is a personal decision that should be considered during advance planning. Anyone can volunteer to be an organ donor upon their death, though not everyone will qualify, and some illnesses, cancers, or bodily damage limit the viability of organs. However, organ donation networks will typically accept what is available and safe to use. According to HRSA (2024), common organs procured for organ donation include the following:
- heart
- kidney
- liver
- lungs
- pancreas
- intestines
- face
- hands
In some cases, other body parts may be procured, in whole or in part, for a variety of uses, including grafting skin, repairing veins and heart valves, restoring vision, and treating burns:
- corneas
- middle ear
- heart valves
- bone
- veins
- cartilage
- tendons
- ligaments
- stem cells
- bone marrow
Consent is required to begin the process of procurement, the harvesting of organs or tissues for donation. First-person consent is when an individual signs up as an organ donor prior to their death—typically when obtaining a driver’s license or completing an advance directive. If no first-person consent is available, family members are asked to decide. Time is crucial to keep the procured organs viable. Nurses may need to have open discussions with families to obtain their consent, particularly in the event of sudden or traumatic injuries in which the individual is otherwise healthy and many organs are viable. Given the circumstances of recent or impending death, nurses will need to take great care in approaching families about consideration for organ donation. This is a difficult conversation for both the nurses caring for the patient and the family. Nurses should keep in mind that they are not alone in the process and may rely on unit leadership, charge nurses, and trained representatives of organ donation procurement organizations to open the conversation with families about organ donation.
Link to Learning
Visit this website on resources for families considering organ donations for more information.
Death Certificate
A death certificate is a legal document, signed by a provider, confirming the circumstances of a person’s death. Death certificates include the following:
- place of death
- time of death
- date of death
- primary cause of death
- secondary contributors to death
- patient name
- patient address
- name of parents
- parents’ birth and death information
A death certificate may also include information on the disposition of remains; a funeral director often fills out this section. Death certificates are usually prepared by a county medical examiner or coroner, though providers may also be certified to prepare them. Depending on the facility’s protocol, a nurse or provider can pronounce the time of death. Copies of death certificates can be ordered through the state where the death occurred.
Autopsy
An autopsy is a medical procedure in which a deceased person’s body is systematically examined to determine the cause of death and to gain additional insights into the person’s health and medical history. Legal requirements for autopsy vary by state. Family members can request an autopsy if they have concerns about the cause of death. Autopsies are typically performed after violent crimes, accidents, or for reasons of unknown cause of death. Depending on state laws and circumstances surrounding the death, autopsies may be completed by the following:
- forensic pathologists
- medical examiners
- coroners
- qualified police officers