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Liberty and Justice for All

Radtke, Kimberly DNP, APRN; Matzo, Marianne PhD, APRN, FPCN, FAAN

AJN The American Journal of Nursing: November 2017 - Volume 117 - Issue 11 - p 52–56
doi: 10.1097/01.NAJ.0000526749.68926.06
Perspectives on Palliative Nursing

This series on palliative care is developed in collaboration with the Hospice and Palliative Nurses Association (HPNA; http://hpna.advancingexpertcare.org). The HPNA aims to guide nurses in preventing and relieving suffering and in giving the best possible care to patients and families, regardless of the stage of disease or the need for other therapies. The HPNA offers education, competence, advocacy, leadership, and research.

When an unauthorized immigrant suffers a brain injury, who decides when treatment is withdrawn? An ethical dilemma touches on issues of clinician autonomy and justice versus patient and family autonomy.

Kimberly Radtke is a palliative care NP at Ministry Saint Clare's Hospital in Weston, WI, and Ministry Saint Michael's Hospital in Stevens Point, WI. Marianne Matzo is director of research, Hospice and Palliative Nurses Association, Oklahoma City, OK. She is an AJN contributing editor and the coordinator of Perspectives on Palliative Nursing. Contact author: Marianne Matzo, mariannem@hpna.org. The authors have disclosed no potential conflicts of interest, financial or otherwise.

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Figure.

Cristina Cruz is a 20-year-old unauthorized immigrant, one of two children of unauthorized immigrants living in a small town in the southwestern United States. (This case is a composite based on our clinical experience.) Until recently, she was a healthy young woman who lived with her parents and worked as a short-order cook. One evening, Ms. Cruz was found by her 17-year-old sister in the bathroom, pulseless and apneic. Her sister called 911 and started CPR. Resuscitation efforts continued en route to the local rural hospital, and spontaneous circulation returned. Ms. Cruz received endotracheal intubation, and when stabilized she was transferred to an ICU in a tertiary-care facility for further evaluation and treatment.

Ms. Cruz is in a vegetative state, and her hospital care includes continuation of full ventilator support. Cardiac monitoring shows sinus rhythm with tachycardia at times, as well as hypertension requiring medication. She can open her eyes spontaneously but cannot follow commands given in English or Spanish, her native language. Spasticity is noted in the extremities, and an electroencephalograph shows almost continuous seizure activity. A neurology consultation results in initiation of suppressive therapy. Computed tomography scanning of the head shows no brain lesions or hemorrhage but does show changes consistent with extensive anoxic brain injury. This type of brain injury, though not equivalent to brain death, is devastating.

The neurologist says that Ms. Cruz's prognosis for full neurologic recovery is extremely poor. A patient with this type of injury often remains in a persistent vegetative state, requiring tracheostomy and ventilation, feeding tube placement, and around-the-clock skilled nursing care.

Her parents do not speak English, and a medical interpreter is called in. The parents are clearly in shock; they say they want everything done in the hopes of seeing their daughter regain her usual function. As devout Catholics, they rely heavily on their faith and regard their daughter's situation with hope for full recovery, and so supportive care is continued. Her parents also admit, to a Spanish-speaking nurse, that they do not understand what the physicians are telling them in terms of prognosis, despite the use of the interpreter. They are at a loss; they never imagined they would find themselves in such a position and have no idea what their daughter would wish for her care.

Unauthorized immigrants and health care policy. Health care disparities related to barriers to access often exist in unauthorized immigrant populations,1-3 who are more likely to be uninsured and to use health care services only in times of crisis because the law doesn't provide for services that are not emergent.1 Unauthorized immigrants are not eligible for public insurance programs under the Affordable Care Act, nor are they allowed to purchase health insurance through state health exchanges.1 These circumstances can create ethical quandaries regarding the principles of patient autonomy and justice. Furthermore, critical illness increases unauthorized immigrants’ risk of repatriation, which occurs when a hospital sends a patient back to her or his native country without consent. Hospitals are obligated only to provide emergency medical care, and when the patient is stable that obligation terminates. The lack of insurance (that is, a reimbursement stream) drives this practice.4 The prevalence of repatriation is difficult to document, but there have been hundreds of documented medical repatriation cases from 15 states to countries including El Salvador, Lithuania, Mexico, and South Korea.4

‘Medically inappropriate’ care. The attending physician tells Ms. Cruz's parents, through the interpreter, that she wants to stop aggressive measures, including removing the ventilator, despite their wishes that treatment be continued. The physician notes the high cost of providing “medically inappropriate” critical and long-term care to someone with little hope for meaningful recovery and no means of paying for care. This ethical dilemma touches on issues of clinician autonomy and justice versus patient and family autonomy. It could be argued that the attending physician has considered autonomy (and felt the need to follow the patient's family wishes) in deciding whether to provide medically inappropriate care,5 independent of the argument related to justice.

The palliative care team—which includes a clinical nurse specialist (CNS), a social worker, and a hospital chaplain—is contacted on day 2 of hospitalization. The physician charges the group with assisting the family with decision making, in the hopes that they will quickly decide on ventilator release and comfort-based care. But the team, in keeping with patient- and family-sensitive care, chooses to focus not on quick decision making but rather on determining the family's values and goals and clarifying diagnoses and prognosis. The medical interpreter facilitates discussion so that the family may make informed decisions.6 This is in keeping with Joint Commission regulations, which support effective communication and cultural competence.7 The goal is to develop a plan of care that's amenable to both family and physician.

Ms. Cruz's parents and sister share with the team their angst and grief at the prospect of losing her. The team aims to help them work through both the grieving process and the decision-making process, which allows the family to understand that the goal is to empower them to make decisions on her behalf.

But this approach takes time, and the physician wants answers quickly. The ICU nurses recognize there are ethical issues at hand that may require outside guidance for both the physician and the family. Caring ethics is at the core of nursing care and the profession itself. Nurses provide for the physical, emotional, and spiritual well-being of others, often in the face of moral and ethical dilemmas.8 The nurses understand that although the interventions provided may be seen as medically inappropriate, the family's participation in clinical decision making may be compromised if they are pushed to make a decision.

Also, the nursing staff caring for Ms. Cruz are in moral distress—they identify with both sides of this case and ask for an ethics committee meeting. Moral distress can occur when “the person is aware of a moral problem, acknowledges moral responsibility, and makes a moral judgment about the correct action; yet, as a result of real or perceived constraints, participates in perceived moral wrongdoing.”9, 10 The physician agrees and says she is seeking an independent opinion on family autonomy and distributive justice.

The four principles of biomedical ethics are justice, autonomy, beneficence, and nonmaleficence11; these provide the framework of the meeting. The staff members present the many aspects of this case, including Ms. Cruz's status as an unauthorized immigrant and uninsured patient and the provision of potentially medically inappropriate care. The committee, in meeting with the attending physician, concludes that the opposing principles of autonomy and justice require further discussion and resolution.

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THE DILEMMA: AUTONOMY VS. JUSTICE

Personal autonomy, highly regarded in health care, involves respecting patients’ wishes regarding health care decision making.12 Health care in the 21st century continues to place the individual at the center of almost every discussion.13 The American Nurses Association (ANA) Code of Ethics for Nurses with Interpretive Statements14 provides a nine-provision framework for ethical decision making. Provision 1 states, “The nurse practices with compassion and respect for the inherent dignity, worth, and unique attributes of every person.”14

In addition, autonomy grants “self-determination of all human beings,” including those with “diminished capacity: because of age, illness, state of consciousness, or use of mind-altering substances.”15 The ANA's interpretive statements describe patients’ moral and legal rights to be informed completely and accurately about their health, along with options for treatment in health-literate language.14 This includes family and significant others. Ms. Cruz's parents, with her best interests in mind, have decision-making power as surrogates because of her lack of capacity for self-determination.

The principle of justice is one many health care providers face daily, especially in discussions of health care reform, socialized medicine, and the cost of health care.16 The ANA code of ethics provision 8 states that “the nurse collaborates with other health professionals and the public to protect human rights, promote health diplomacy, and reduce health disparities.”14 Justice involves fairness in allocating resources while providing accessible and equitable care to many.17 In today's health care climate, it can be challenging to provide equitable care that uses resources responsibly.15 According to David Crippen, justice in medicine may be understood as “it is better to artificially maintain life in ten death spirals than miss one expected survivor.”18 Koch states that discussing cost “is rarely about compassion and appropriate care. It is typically a rationale for withholding care on the basis of social affordability and utilitarian assumptions about a patient's social value.”19

Can the needs of one person outweigh the needs of many, merely because that one person is thought to be more deserving of care? Put another way: Should Ms. Cruz's inability to pay, along with her immigration status, determine whether care should be provided, especially when her ICU care costs upward of $4,000 per day?

Some believe that health care is a right17—that is, everyone is entitled to it, regardless of ability to pay. Ms. Cruz is receiving circulatory and respiratory support, even though some may say these are extraordinary measures, given her grave prognosis. It has been argued that health care is a product consumers should pay for.18 Ms. Cruz has no ability to pay, nor does her family. The facility is facing the forfeiture of the cost of her care, which will amount to almost $300,000. Should health care costs be disclosed to patients and families? As Hall states, “Out of respect for patient autonomy and in the interest of justice, informed consent should include disclosure of the out-of-pocket costs that patients can expect to bear.”20 This is addressed with the Cruz family, per their request, as part of informed consent and information sharing. It is likely the family will experience a catastrophic financial burden as a result of ICU care.

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FAMILY MEETINGS

Several meetings are held with Ms. Cruz's parents and extended family, the palliative care team, and the medical interpreter. The team establishes trust and determines the family's needs, based on their values. In this case, the team makes use of a medical interpreter for all conversations. The team members acknowledge that the parents are overwhelmed and answer their questions in ways they can understand. They concur that her family must understand Ms. Cruz's anoxic brain injury. Pictures and teaching models of the brain are used to help them see what is meant by “brain injury due to anoxia.”

The parents ask whether Ms. Cruz is brain dead, what care will look like moving forward with a tracheostomy, a percutaneous endoscopic gastrostomy (PEG) tube, and around-the-clock care. The team explains that while she is not brain dead, her brain will never recover from its injury. The team reassures them throughout the discussion that they will support them, with a focus on their faith, by ensuring that a Spanish-speaking priest is available, if desired. It has been shown that the perspective each team member brings allows families to make the transition from acute care to palliative care21 and to establish a holistic mindset to the care given.22

Ms. Cruz never talked with her family about her wishes in such a situation. They know she wanted to become a nurse but have no idea what she would say she wanted if asked. In the midst of their grief and uncertainty, they want to know about the practical side of caring for her 24 hours a day, seven days a week. At first, they thought they could care for her at home. But it was explained that she would need a tracheostomy and a PEG tube and would need mechanical lifts for transfer from bed to chair. She would require full assistance with bathing, dressing, turning, feeding, oral care, and tracheal suctioning. She would be at risk for sequelae related to immobility, such as skin breakdown, muscle atrophy, and infections, to name a few.

The CNS discusses with the parents the events leading to admission, the current care, and the grim prognosis for full neurologic recovery. Options for care are presented, including around-the-clock home care, placement in a long-term ventilation facility, or hospice care. The social worker addresses the financial aspects of these care options. What resources, if any, would be available to them to help offset the burden and cost of care? The answer, unfortunately, is very few.

It has become clearer to Ms. Cruz's parents on day 3 that it will be nearly impossible for them to care for their daughter, along with their need to work to provide for their family. It is difficult for them to watch her languish in a state with so little hope for a meaningful life.

They say that because Ms. Cruz was such a young, vibrant woman, she would not want to live this way. The chaplain has contacted a Catholic priest, and the sacrament of the Anointing of the Sick is performed at the family's request. Ms. Cruz's sister bonded with the chaplain when Ms. Cruz was brought into the ICU, and she begins to express to him her preferences.

Even though the family was moving toward a decision during these meetings with the team, the attending physician opted to go ahead with an ethics committee meeting.

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ETHICAL DECISION MAKING

Health care ethics committees have long provided guidance to patients, families, and clinicians, in an effort to resolve complex medical dilemmas.23 The competencies for members of ethics committees include identifying and analyzing the conflict, accessing and applying standards and guidelines, and establishing expectations of the committee.23 Ethics committees also provide a forum for the presentation of narratives24: the narrative of fact from the medical record (the patient is in a persistent vegetative state) and the narrative of arguments based on the beliefs of those involved (the patient is a human being and therefore the allocation of resources is secondary to self-determination). Such committees are an ideal forum for nursing to advocate for patients and help to ensure that patients’ voices are heard.25

In this institution, the health care ethics committee is not a decision-making body but rather one that reviews information, applies guidelines and standards, and makes recommendations. To resolve the dilemmas surrounding Ms. Cruz's care, the ethics committee meets on day 4 of her ICU admission.

The record is reviewed, and the attending physician presents information on why life-prolonging interventions should be discontinued, basing her arguments on principles of distributive justice. Distributive justice includes a responsibility to preserve society's resources so that there can be fair and equitable distribution of resources.26 The social worker and the CNS present their perspectives on autonomy and allowing Ms. Cruz's family to come to their own decision, in their own time. The medical interpreter represents the family's perspective at the ethics committee meeting (the family has declined to attend).

The bioethics committee finds that although the arguments regarding immigration status and lack of insurance are compelling, they will keep the discussion patient centered, emphasizing the facts of the case and the ethical tenets involved—autonomy versus distributive justice. The committee opines that while they can sympathize with the argument that the cost of caring for this patient would be very high, autonomy is the paramount issue, and the family should be allowed to come to their own decision about Ms. Cruz's care.

A few hours later the family decides to release her from the ventilator and keep her comfortable—a decision they reach without knowing the bioethics committee's opinion. Ms. Cruz is transferred to the palliative care unit, where she dies on day 14, with her family at her side.

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IMPLICATIONS FOR NURSING

The nursing staff involved recognized the ethical conflicts related to Ms. Cruz's care. Nurses are typically the practitioners with a view of “the big picture” and act as patient and family advocates. The ANA code of ethics describes the nurse's responsibility to identify difficult issues and to work toward resolution to ensure safe and equitable care.14 Nursing can, and should, play an active role in ethical decision making, both at the bedside and through such formal venues as ethics committee meetings.25

The nurses in this case advocated for family meetings so that the family would have a voice in the decisions regarding the ethical dilemmas surrounding Ms. Cruz's care. Nurses should be aware of these dilemmas and be empowered to act as advocates for patients and families. This is inherent in the professional nursing role, and active participation in ethical decision making is crucial to ensuring that patients have a voice, even when they cannot speak for themselves. Establishing a trusting relationship, ensuring information is given in a way that promotes understanding (in this case, through the use of a medical interpreter), and allowing families time to make difficult decisions are essential to upholding the principles involved in an ethical provision of care.

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