LEGAL AND ETHICAL FACTORS IN END-OF-LIFE CARE
The Right to Die
The right-to-die movement in America is gaining public support, indicating widespread dissatisfaction with the quality of end-of-life care. The right-to-die concept includes assisted suicide (also called physician aid in dying [PAD]) and voluntary active euthanasia. In assisted suicide, the healthcare practitioner, usually a physician, provides the means to end life—such as a prescription for a lethal amount of drugs, the drugs themselves, or other measures—by a patient or a person who has knowledge of the patient’s intention.
According to the American Nurses Association Code of Ethics (last updated in 2015), Provision 1.4, however, nurses “may not act with the sole intent of ending a patient's life” even though such action may be motivated by compassion, respect for patient autonomy, and quality of life considerations (ANA, 2019).
Both nurses and physicians are confronted with requests for assistance in dying. However, as of 2019, this practice is legal in only nine jurisdictions.
- In 1997, Oregon became the first state to pass right-to-die laws.
- Washington (2008) and Montana (2009) soon followed. While the law in Montana does not allow a specific PAD or right-to-die procedure, it states that assistance does not violate any current state laws.
- In 2013, the Vermont legislature passed a right-to-die law by a 75–65 vote. The guidelines for practice are very stringent.
- In 2016, California became the fifth state to pass a right-to-die law, allowing terminally ill patients the right to end their own lives by using a lethal dose of medications ordered by a physician and self-administered. Two physicians must attest to the patient as being terminal within six months and mentally capable of making the decision. The California law passed after much debate, advertising on both sides, and input from healthcare providers, parents of terminally ill children, and religious leaders.
- The five other jurisdictions that have adopted physician-assisted suicide (PAS) or right-to-die laws include: Colorado (2016), Hawaii (2018), Washington, DC (2018), Maine (2019), and New Jersey (2019).
- In 2021, New Mexico joined the previous nine states and the District of Columbia by passing legislation for medical aid in dying.
(Charlotte Lozier Institute, 2019; Compassion & Choices, 2022)
Healthcare practitioners acknowledge that there is an “underground” practice of assisted suicide in the United States. Some maintain that the principle of double effect is used to justify what is really assisted suicide. The principle of double effect states that the potential to hasten imminent death is acceptable if it is the unintended consequence of the primary intention to provide comfort and relieve suffering. That is, analgesia and sedation may be given to a terminal patient for the purpose of alleviating pain or suffering and may result in death whether deliberately or inadvertently (Faris et al., 2021). For example, a terminal patient with severe difficulty breathing may be given large doses of narcotic to relieve suffering. As the breathing is eased by the narcotic, there may be a second effect that stops breathing altogether.
Palliative Sedation Therapy
Palliative sedation therapy (PST) is considered a “last-ditch” option in end-of-life care to relieve terminal suffering. It is used when symptoms have proven refractory to other measures or treatments. PST may be used to treat intractable pain and suffering when other measures such as a physician-assisted death is not an option. Narcotic pain medications mixed with sedation for comfort and anti-anxiety medications may have the sometimes unintentional result of terminally sedating the patient (Cherney, 2021).
Palliative sedation therapy is controversial. Some opponents have incorrectly equated it with euthanasia. Euthanasia and PST are different in intention (relief of intolerable suffering in PST versus killing the patient in euthanasia), in procedure (use of a sedative for symptom control in PST versus use of a lethal agent in euthanasia), and in outcome (alleviation of suffering in PST versus immediate death in euthanasia).
As pain escalates and becomes more difficult to control, it may be necessary to consider palliative sedation. Palliative sedation is an appropriate method to consider when symptoms are refractory (not adequately controlled with conventional treatment options). Poorly controlled pain, agitation, refractory dyspnea, nausea, and vomiting are the primary reasons for using palliative sedation (Bhyan et al., 2022).
EUROPEAN ASSOCIATION OF PALLIATIVE CARE 10-ITEM FRAMEWORK FOR GUIDELINES IN PALLIATIVE SEDATION
- Recommend preemptive discussion of potential role of sedation in end-of-life care and contingency planning.
- Describe the indications in which sedation may or should be considered.
- Describe the necessary evaluation and consultation procedures.
- Specify consent requirements.
- Indicate the need to discuss the decision-making process with the patient’s family.
- Present direction for selection of the sedation method.
- Present direction for dose titration, patient monitoring, and care.
- Guidance for decisions regarding hydration and nutrition and concomitant medications.
- The care and informational needs of the patient’s family.
- Care for the medical professionals.
(Surges et al., 2022)
The role of the nurse in palliative sedation includes the administration of medications, recognizing and notifying healthcare practitioners of refractory symptoms, providing psychosocial support and education to the patient and family, and identifying culturally specific needs related to dying and death. Nurses have a responsibility to provide symptom relief and prevent suffering in dying patients (ANA, 2019). It is important to palliative nurses that consent by the patient or family be given before administering potentially lethal doses of sedation to the terminally ill.
TYPES OF PST
Two types of palliative sedation may be used in end-of-life care: proportionate palliative sedation (PPS) and palliative sedation to unconsciousness (PSU), also called gradual continual deep sedation (CDS). In PPS, medications such as benzodiazepines are increased gradually together with other symptom-relieving measures until suffering is relieved during both waking and sleeping hours. Survival following PPS was longest with higher sedative doses, an observation that may help dispel fears concerning the use of PPS to hasten death (Twycross, 2019).
In PSU, unconsciousness is the intended goal of sedation rather than a side effect. Medications are increased rapidly over minutes and hours to achieve unconsciousness and left at that level until death occurs. PSU is usually administered when the imminently dying patient finds severe physical symptoms intolerable despite state-of-the-art palliative care.
However, controversy surrounds the use of PSU to treat psychological, existential (a loss or interruption of meaning, purpose, or hope in life), or spiritual suffering. Some consider these to be outside the realm of a physician’s expertise, and others consider them within the knowledge, tools, and expertise of the interdisciplinary team.
Health professionals must understand the difference between the practice of PPS and PSU and the ethical issues surrounding their use. Palliative sedation used to be referred to as “terminal” sedation, but there was some ambiguity as to whether the term terminal referred to the sedation or the patient. “Palliative” sedation was considered more appropriate, as palliation of the unwanted symptoms was the desired effect. Nurses understand that the timing and appropriateness of palliative sedation is crucial to the patient or family’s comprehension and consent. Patients and families need to understand these last-resort options and make decisions about such end-of-life care before the need arises (Twycross, 2019).
Healthcare practitioners must also recognize that the patient always has the right to stop unwanted medical treatments or procedures while they are in progress—as was the case prior to consenting. These procedures may include CPR, mechanical ventilation, and artificial nutrition and hydration.
CASE
Doris is in the terminal phase of stage IV pancreatic cancer and experiencing severe abdominal pain much of the time. She has been under hospice care and requires proportionate palliative sedation (PPS) to achieve any degree of relief from the pain. It is Doris’s expressed wish that she not be left in intractable pain, and she has named her daughter Sheila in her advance directive to make medical decisions if she is unable to make decisions for herself. Sheila has been estranged from her mother for seven years but is now at her side most of the time.
The PPS has left Doris comfortable, rousable, but barely coherent. When her mother is unable to answer questions, Sheila asks that the PPS be reduced, stating her mother would want to be able to communicate with family. When the PPS is withdrawn, Doris becomes more lucid but complains of severe abdominal pain and asks for more pain medication. This results in periods of unresponsiveness, causing Sheila to again instruct the nurses to decrease the medication.
Donna is the charge nurse on Doris’s unit and has 20-plus years of experience in oncology. She arranges a conference for the following day with the family, including Sheila, the palliative care nurse, the primary physician, and Donna herself. Sheila is encouraged to express her fears of losing her mother and her hope to have time to communicate with her first. The group discusses the severe level of pain caused by pancreatic cancer and Doris’s wish that she not experience intractable pain. A compromise is reached that takes both Doris’s and Sheila’s wishes into consideration.
Removing or Deactivating Cardiovascular Implants
Implanted cardioverter/defibrillators (ICD) are used to correct life-threatening dysrhythmias. An actively dying patient may develop ventricular tachycardia due to hypoxia or electrolyte imbalances. One third of patients with ICDs will experience a shock in the last 24 hours of life unless the device is removed or deactivated. The shocks can potentially cause pain, distress, and anxiety and may prolong the dying process (Mooney et al., 2019).
A consensus statement from the Heart Rhythm Society (2010) suggests that patients nearing the end of life (or their healthcare proxy) have the right to decide whether to have these pacemakers or other cardiovascular implants removed or deactivated. The statement was developed in collaboration with several organizations, including the American College of Cardiology and the American Heart Association. It explicitly states that removing or deactivating an implanted cardiovascular device near the end of life “is not physician-assisted suicide or euthanasia.” However, it also states that physicians or other caregivers cannot be compelled to carry out a procedure that conflicts with their ethical values. In such cases, the physician cannot abandon the patient but rather should refer the patient to a colleague willing to carry out the task. This consensus statement was reaffirmed in 2018 and will be formally reassessed in 2023 (HRS, 2022).
Advance Directives (ADs)
Advance medical directives are documents containing patients’ oral and written expressions of their preferences about future medical care if they should become unable to speak for themselves. ADs usually name another person chosen to make healthcare decisions for the individual when they are no longer to make decisions for themselves.
Federal law (the Patient Self-Determination Act) requires hospitals to inform patients that they have the right to complete an advance directive. Advance directives are regulated by state law and therefore differ from state to state.
Such documents usually address the patient’s wishes regarding:
- CPR (cardiopulmonary resuscitation)
- Ventilator use
- Artificial nutrition (tube feeding) and artificial hydration (intravenous [IV] fluids)
- Comfort care
Approximately 45% of Americans have advance directives (ADs) or living wills, which is a considerable increase over previous years. Older patients with chronic disease(s) are especially encouraged to have advance care planning in place (Jones, 2020). The use of ADs varies according to race/ethnicity. According to the American Psychiatric Association, Asian and White patients are more likely to have ADs than patients of other racial/ethnic backgrounds. Many patients may feel that ADs are not necessary because family and physicians should already know what their wishes are (McDarby, 2019).
When a surrogate is making end-of-life decisions for a patient, the surrogate will be expressing the wishes of the patient that they have previously discussed. When asked about having to make a decision about removing life support for a family member, 25% of adults surveyed asserted they had been in this situation. Particularly in the case of chronic illness in which a slow physical or mental decline takes place, advance directives provide the opportunity to ensure that a person’s own preferences will be followed. Copies of the advance directive may be given to family, care providers, one’s hospital, an attorney, or others. The plan should be reviewed periodically to provide for necessary updates (Jones, 2020).
A video can also be made explaining the patient’s precise wishes, although this is not a legally compelling document.
Healthcare professionals have an obligation to work with patients and their families to reach decisions that balance autonomy and beneficence. However, healthcare professionals are legally constrained from witnessing an AD if they are an employee of the organization in which the patient’s wishes will be enacted.
LIVING WILL AND MEDICAL POWER OF ATTORNEY
In most states, an advance directive can be either a living will or a medical power of attorney, also called a durable power of attorney for healthcare, a healthcare proxy, or declaration or appointment of a healthcare agent. Living wills and medical or durable powers of attorney predate ADs but may still be in use among older patients, and healthcare workers should be able to distinguish among the various forms.
A living will is a document written while alive to dictate preferences for healthcare decisions. It addresses personal preferences regarding the above-mentioned life-sustaining measures and under what circumstances the patient would prefer those measures be performed or withheld.
A medical or durable power of attorney (DPOA) names one or more people who may make decisions for the person who is unable to make their own wishes known. Referred to as a healthcare proxy (representative, agent, or surrogate), this person(s) is named on the advance directive form. It is essential that a very specific conversation take place between the patient and the person named in the DPOA to ensure that there is clear understanding about the patient’s final wishes (NIA, 2018).
PHYSICIAN ORDERS FOR LIFE-SUSTAINING TREATMENT (POLST)
Several states have adopted an advance directive form developed in Oregon and known as POLST, which stands for Physician Orders for Life-Sustaining Treatment (National POLST, 2020). This simple form, to be completed and signed by both patient and a physician or nurse practitioner, specifies the patient’s preferences concerning measures such as antibiotics, artificial nutrition (including tube feeding) and hydration, CPR, comfort measures, and mechanical ventilation/respiration.
The form is printed on brightly colored paper and stays with the patient during transfers from one care setting to another. Patients at home keep the POLST form on the refrigerator, where emergency responders can find it. Long-term care facilities retain POLST forms in residents’ charts.
In other states, the Medical Orders for Life-Sustaining Treatment (MOLST) form is used instead of the POLST form. The two forms are very similar. The main differences are in the wording related to intubation or nonintubation (NI), the degree to which resuscitation measures will be carried out, and the position on the use of comfort measures (Lambert, 2022).
(See also “Resources” at the end of this course.)
DO-NOT-ATTEMPT-RESUSCITATION (DNAR) ORDERS
Do-not-attempt-resuscitation orders (formerly known as do-not-resuscitate [DNR] orders) have been renamed to emphasize the minimal likelihood of successful cardiopulmonary resuscitation (CPR). Additionally, a specific order to refrain from intubation is referred to as “do not intubate” (DNI).
Patients and families must understand not only the unlikely success of resuscitation but also the risks involved, which include fractured ribs, damaged internal organs, and neurologic impairment. Although the patient (or family) must ultimately decide about whether to attempt CPR, healthcare professionals explain that withholding CPR does not equate with letting someone die. Rather, a DNAR order should be considered an “allow natural death” (AND) order (Whidbey Health, 2022).
The primary care provider should discuss the possibility of a DNAR order as soon as it is reasonable and while the patient is still able to make decisions. A delay in putting a DNAR order in place may result in treatment unwanted by the patient and in distress for the healthcare team.
The DNAR order should be readily available in the event of an emergency to ensure that the patient’s wishes will be honored. It should be posted prominently, either on the head or foot of the bed, or if the patient is at home, on the refrigerator. In the facility where the patient is admitted or resides, specifics of the order are also carefully documented in the patient’s chart.
If the patient’s preferences are not known at the time of a cardiopulmonary arrest, then resuscitation must be initiated. The resuscitation may then be stopped if it is learned that it is not in keeping with the patient’s wishes (AMA, 2019).
MECHANICAL VENTILATION (MV)
Mechanical ventilation is achieved by the introduction of an endotracheal or tracheostomy tube into the patient’s trachea. This provides an artificial airway through which air under pressure and oxygen can be used to simulate breathing. If the cause of a patient’s inability to breath adequately is temporary, such as pneumonia, use of MV can prolong life long enough for the needed treatment, such as antibiotics, to be provided.
Decisions about mechanical ventilation may be spelled out in a patient’s advance directive. Some patients choose to forgo MV, believing that it merely prolongs the dying process. Others choose to have MV when they can no longer breathe on their own (NIA, 2018). Choosing MV may reflect the erroneous belief that this life-sustaining treatment can improve the patient’s prognosis.
Depending on the physician, choosing MV may affect the physician’s certification of the patient as terminal and, therefore, the patient’s eligibility for hospice benefits. Use of MV requires that the patient lie in bed or sit in a chair with restricted movement. If an endotracheal tube is used, the patient will not be able to speak or swallow. Mechanical ventilation also increases the risk of pneumonia because it prevents patients from coughing effectively and allows fluid to build up in the lungs.
Once MV is started, the decision to withdraw it may present a legal and ethical controversy for the physician and the family. In some cases, withdrawal of this life support may require a court order.
ARTIFICIAL NUTRITION AND HYDRATION (ANH)
Patients who receive hospice care have food and drink as they wish or need. Some individuals make their own choice, often as part of an advance directive, to stop or limit eating or drinking at a certain point in their dying process. When oral nutrition is no longer safe for a patient, ANH using enteral feeding tubes is sometimes used to deliver nutrition.
Decisions about whether to have ANH involve weighing the potential benefit against the burden to the patient. The American Nurses Association (ANA) position statement supports a patient’s (or surrogate’s) right to weigh the risks, benefits, and burdens of ANH after a full discussion with the healthcare team (ANA, 2017). The ANA position statement thereby supports the ANA beliefs about autonomy, relief of suffering, and patients receiving expert care at the end of life.
Little evidence supports the use or disuse of hydration as a comfort measure at the end of life. The reason for this lack of evidence is that it is not ethically possible to conduct a controlled, randomized clinical trial in which one group of patients near the end of life receives hydration and a second group has hydration withheld (Heuberger & Wong, 2019).
Although ANH may extend the patient’s life a few days or weeks, there is considerable physical and emotional trauma in inserting a nasogastric tube or undergoing surgery to place a gastrostomy (feeding) tube. There is also the increased risk of infection, increased risk of aspiration, erosion of nasal tissue, and increased diarrhea, all of which can prolong suffering (NIA, 2018).
The potential burdens of ANH depend on the route of administration and may include sepsis (with total parenteral nutrition), aspiration (especially with tube feedings), diarrhea (also with tube feedings), pressure sores and skin breakdown, and complications due to fluid overload. Demented or confused patients receiving ANH may need to be physically restrained to prevent them from removing a gastrostomy tube, nasogastric tube, or central intravenous line. Pain, epistaxis (with a nasal feeding tube), pharyngitis, esophagitis, and airway obstruction may also occur. Many health professionals believe that hospice care with cessation of feeding and fluids is a more humane alternative to ANH (Heuberger & Wong, 2019).
There is widespread use of feeding tubes at the end of life, particularly in patients with Alzheimer’s disease or other cognitive impairment, even though there is not sufficient evidence to prove enteral tube feeding is beneficial in patients with advanced dementia. (See also “The Patient Who Has Dementia” later in this course.)
Research suggests that people who choose not to have ANH do not suffer due to hunger or thirst. Without ANH, in fact, patients are less likely to experience bloating or to develop pleural effusions (fluid around the lungs), which can cause shortness of breath, or fluid in the throat, which requires suctioning. Studies also indicate that forgoing artificial hydration increases the body’s production of endorphins (natural pain-relieving hormones), making the patient more comfortable and less likely to experience pain. The only side effect of dehydration at the end of life is dry mouth, which can be relieved by good mouth care or ice chips.
Clinicians can help families understand that forgoing ANH is not “killing” or “starving” the patient. Communication among the nurses and physician writing orders and taking care of the patient, and those making decisions about care, should guide the decisions made regarding AHN. One of the important considerations is the patient’s religious or spiritual beliefs. Communication with family or surrogates with these fears can help assuage worries that the patient is “starving to death.” It is significant for them to know that inability to eat and drink is a natural part of dying (Akdeniz et al., 2021; Heuberger & Wong, 2019).
CASE
Kathy, a hospice nurse, was questioned by the family of an older patient on hospice care in the nursing home where she worked. When the discussion turned to a decision about providing artificial nutrition and hydration for their loved one, a few of the family members expressed concern that withholding nourishment and liquids would cause unnecessary suffering by “starving her to death.”
Kathy gently explained to family that studies have shown no benefit in giving tube feedings or intravenous therapy to dying patients and that these measures could, in fact, cause additional pain and other burdens, such as aspiration or diarrhea, on their loved one. Kathy assured the family that the nursing staff would continue to keep the patient comfortable, give her pain medication when needed, and provide mouth care and moisten her mouth with ice chips to keep it from feeling dry.