Question

what is the role of advocacy for the social worker when working with a family that has to decide to do a DNR for the patient's advance heart disease. How can the social worker advocate for the family? The patient is dying and has not done any advance directives, the family is having to decide. They are not sure what the doctor is saying and they are in disagreement.

Answer 1

Withholding or withdrawing life-sustaining therapies is ethical and medically appropriate in some circumstances. Before reviewing specific treatment preferences, it is useful to ask patients about their understanding of the illness and to discuss their values and general goals of care. Family physicians should feel free to provide specific advice to patients and families struggling with these decisions. Patients with decision-making capacity can opt to forego any medical intervention, including artificial nutrition/hydration and cardiopulmonary resuscitation.

Nurses must advocate for and play an active role in initiating discussions about DNR with patients, families, and members of the health care team. Nursing care is directed toward meeting the comprehensive needs of patients and their families across the continuum of care. This is particularly vital in the care of patients and families at the end of life to prevent and relieve the cascade of symptoms and suffering that are commonly associated with dying. Nurses are leaders and vigilant advocates for the delivery of dignified and humane care. Nurses actively participate in assessing and assuring the responsible and appropriate use of interventions in order to minimize unwarranted or unwanted treatment and patient suffering. End-of-life (EOL) decision making in acute care is complex, involving difficult decisions, such as whether to initiate or discontinue life support, place a feeding tube or a tracheostomy, or initiate cardiopulmonary resuscitation (CPR) in the event of a cardiac arrest. Because of the severity of illness and the nature of treatments, acutely ill patients often lack decision making capacity, which puts the family members in the role of decision-maker. One of the biggest challenges to EOL decision making is prognostic uncertainty and determining when to initiate EOL discussions with family members. Patients may consider many life-sustaining treatments; in addition to cardiopulmonary resuscitation (CPR), options include elective intubation, mechanical ventilation, surgery, dialysis, blood transfusions, artificial nutrition and hydration, diagnostic tests, antibiotics, other medications and treatments, as well as future admissions to the hospital or to the intensive care unit. The treatment choices and the complexities increase as a patient's condition worsens. However, many patients who initially choose a do-not-resuscitate (DNR) order opt for progressively more restrictions as diseases progress. Although not using an intervention and withdrawing that intervention are ethically and legally equivalent, it is better to make these decisions ahead of time. Nurses and physicians express fear of removing all hope, making the wrong decision or giving up too soon. Further, it is difficult emotionally for both family members and health care professionals to give up on curative care. Unfortunately, health care professionals feel inadequately trained to determine when and how to initiate these discussions. Thus, EOL discussions may begin when the physician decides to discuss a do-not-resuscitate (DNR) order, which often takes place when the prognosis is poor and the patient is no longer able to participate.

Cardiopulmonary resuscitation (CPR) is unique among medical interventions, since it is the only intervention where a presumption to provide the intervention exists, unless there are written physician orders not to do CPR. Although CPR has been used effectively since the 1960s, the widespread use and possible overuse of this technique and the presumption that it should be used on all patients has been the subject of ongoing debate. The efficacy of CPR attempts, balancing of benefits and burdens, and therapeutic goals should be considered in determining if DNR is appropriate. The DNR decision should reflect what the informed patient wants or would have wanted. This demands that communication about end-oflife wishes occur among all involved parties (patient, health care providers, and family; the latter as defined by the patient) and that appropriate DNR orders be written before a life-threatening crisis occurs. If the patient’s wishes are unknown, the patient's best interest is the prime consideration. The choices and values of the competent patient should always be given highest priority, even when these wishes conflict with those of the health care team and family. An exception to this is when one or more physicians determine that CPR attempts would be medically ineffective or if the decision of the patient/surrogate is in conflict with the informed opinion of the agency/provider as to what constitutes beneficent care of the patient. In this situation, requests from a patient or surrogate will not be honored. Agency policies concerning the mechanisms for safe transfer of care by providers/agency must be in place. Additionally, if a DNR decision poses special ethical conflicts for a patient's nurse, mechanisms need to be in place for transfer of care to another nurse who is competent to care for that patient.

Nurses are at the bedside during the dying process; they spend entire shifts with patients and families, they develop trusting relationships, and they are competent to assess patient and family needs. Nurses gain a unique perspective that allows them to become aware when a patient is not responding to treatment. This perspective places nurses in a position to facilitate EOL decision making. A systematic understanding of what roles nurses enact and what strategies they use in EOL decision making is necessary to ensure that decisions made are consistent with the patient’s and family’s goals of care.

Discussion of DNR status should be included whenever goals of treatment, such as the following, are discussed:

1. Benefits versus the burdens of treatment
2. Comfort and symptom palliation
3. Aggressive attempts to sustain life with the understanding that life-sustaining technology will be withdrawn if it does not meet the goals agreed upon by the health care practitioner and patient or family

Nurses play an important role in facilitating communication between and among family members and between family members and the health care team (team). The strategies nurses use to enact this role are presented in three categories: give information to physicians, give information to family members, and mediate. They relay information about the patients and families to physicians. They also provide the team with information about the patient’s clinical status, about the patient’s and family’s emotional and psychological state, and about patients’ and families’ expressed wishes. They are “nodal points for exchange of information”, with nurses obtaining information from many sources, synthesizing that information, and using it to develop a holistic assessment. This holistic or “big picture” assessment allows nurses to expand their role from information broker to supporter and advocate. These studies demonstrate that nurses are an important source of information to aid physicians in EOL decision making.

Patients undergoing surgery pose special considerations. Regarding suspension of DNR status during surgery, strong arguments have been made that seriously or terminally ill patients who consent to surgery do so because they desire functional or palliative effects. The Association of Perioperative Registered Nurses supports both a reconsideration of DNR or allow-natural-death (AND) orders before surgical procedures and that all risks and benefits associated with surgery and anesthesia be discussed with patients who have DNR or AND orders in place before undergoing surgery. An order to allow natural death is meant to ensure that only comfort measures are provided. By using the AND, physicians and other medical professionals acknowledge that the patient is dying and that everything being done for the patient—including the withdrawal of nutrition and hydration—allows the dying process to occur as comfortably as possible.

The issue of DNR in the operative suite and post-operative setting can present significant problems, if the policy surrounding DNR is not clear. If the DNR is rescinded for an operation, the time period and circumstances under which it is reordered should be specified. The conversation and order must be documented in the patient’s medical record and communicated to all staff involved in the patient’s care.

The avoidance of partial DNR orders and instead suggests care plans contain the following five elements for life-threatening conditions in patients with DNR orders. These elements may also assist with discussions regarding goals of care and DNR orders:

1. Identification of the patient’s treatment goals
2. Identification of specific medical interventions declined because of burden or discomfort
3. Physician discretion in determining the utility of specific treatments within the context of the patient’s care objectives
4. Correlate goals of care only with medically appropriate interventions
5. Care Plans that can be easily translated by any physician or first responder to a medical emergency

Discussion of these five elements and the subsequent documentation would provide nurses and other members of the interdisciplinary health care team with a clear view of a patient’s desired end-of-life care.

Nurses often feel that it is not their place to actually recommend a DNR order, although they feel confident about their ability to discuss DNR orders. Nurses do, however, have a duty to:

1. Educate patients and their families about the use of biotechnologies at the end of life, termination of treatment decisions and advance directives;
2. Encourage patients to think about end-of-life preferences in illness or a health crisis;
3. Support patients, their families, and their surrogates to have end-of-life discussions with their physicians;
4. Ensure advance directives are implemented;
5. Communicate known information that is relevant to end-of-life decisions to appropriate health care personnel;
6. Advocate for a patient's end-of-life preferences regardless of surrogate decision maker’s or physician’s desire to not honor them if indeed the preferences reflect beneficent care.

Nurses need to be aware of and have an active role in developing DNR policies within the institutions where they work. In health care organizations, clear DNR policies should be in place that will enable nurses to effectively participate in this crucial aspect of patient care. The appropriate use of DNR orders, together with adequate palliative end-of-life care, can prevent suffering for many dying patients who experience cardio-pulmonary arrest. As primary continuous health care professionals in health care facilities, nurses must be involved in the planning as well as the implementation of resuscitation decisions.

Language matters, and family members often misconstrue DNR orders as giving permission to terminate an individual’s life. Alternative ways of discussing DNR may be helpful and are worth investigating. The term allow natural death (AND) makes the intent of the order very clear because the word death is used in the acronym. By changing the wording from do not resuscitate to allow natural death, the acronym is more descriptive and perhaps less threatening.

The American Nurses Association recommends that:
1) Clinical nurses actively participate in timely and frequent discussions on changing goals of care and initiate DNR/AND discussions with patients and their families and significant others.
2) Clinical nurses ensure that DNR orders are clearly documented, reviewed, and updated periodically to reflect changes in the patient's condition.
3) Nurse administrators ensure support for the clinical nurse to initiate DNR discussions.
4) Nursing home directors and hospital nursing executives develop mechanisms whereby the AND form accompanies all inter-organizational transfers.
5) Nurse administrators have an obligation to assure palliative care support for all patients.
6) Nurse educators teach that there should be no implied or actual withdrawal of other types of care for patients with DNR orders. DNR does not mean “do not treat.” Attention to language is paramount, and euphemisms such as “doing everything,” “doing nothing,” or “withdrawing care or treatment,” to indicate the absence or presence of a DNR order should be strictly avoided.
7) Nurse educators develop and provide specialized education for nurses, physicians, and other members of the interdisciplinary health care team related to DNR, including conversations on moving away from DNR and toward AND language.
8) Nurse researchers explore all facets of the DNR process to build a foundation for evidence-based practice.
9) All nurses ensure that whenever possible, the DNR decision is a subject of explicit discussion between the health care team, patient, and family (or designated surrogate), and that actions taken are in accordance with the patient's wishes.
10) All nurses facilitate and participate in interdisciplinary mechanisms for the resolution of disputes between patients, families, and clinicians’.
11) All nurses actively participate in developing DNR policies within the institutions where they work. Specifically, policies should address, consider, or clarify the following:
A. Guidance to health care professionals who have evidence that a patient does not want CPR attempted but for whom a DNR order has not been written;
B. Required documentation to accompany the DNR order, such as a progress note in the medical record indicating how the decision was made;
C. The role of various health care practitioners in communicating with patients and families about DNR orders;
D. Effective communication of DNR orders when transferring patients within or between facilities;
E. Effective communication of DNR orders among staff that protects against patient stigmatization or confidentiality breaches;
F. Guidance to practitioners on specific circumstances that may require reconsideration of the DNR order (e.g., patients undergoing surgery or invasive procedures);
G. The needs of special populations (e.g., pediatrics and geriatrics).

ANA also supports increased institutional support for nurses requesting family meetings with physicians and other members of the interdisciplinary health care team to address DNR and goals of care.