No other facet of medicine is as difficult for the neurointensivist as communication. Sometimes communication occurs with the patient but more frequently it takes place with the family members. There have been many articles and books written about communication; however, Shannon’s book on the mathematical theory of communication from 1949 discussed that, at its basic elements, there is a source that produces a message, a transmitter of the message through a channel to a receiver, which transforms the message for whom the message was intended. Each part and step can be influenced; therefore the health care worker should realize the importance of gathering the data, empathizing with and respecting the individuals in the relationship and the redundancy and reconditioning of the information. The neurointensivist being part of a team should be aware that, to achieve the best patient experience, other members of the health care team, such as the palliative care team, can provide resources and support not available through other areas in order to improve the quality of life of the patient.
Case Presentation
As the neurosurgeon on call, you are called to the emergency room to see a patient who presented having been found down by his family. The emergency medicine (EM) provider tells you that the patient was intubated for decreased Glasgow Coma Scale (GCS) score as he was GCS score 8 on arrival with briskly reactive pupils. On questioning the EM provider for the patient’s medical record number and name you realize it is a patient you have previously operated on twice to remove recurrent glioblastoma multiforme tumors from the left sylvian region. At his last clinic visit, you recall that the patient had speech difficulties as well as right-sided weakness and recurrent seizures currently managed with Dilantin and Keppra. Given your familiarity with the patient and his disease process, you start heading for the emergency room anticipating the difficult conversation you will have with the patient and his family.
See end of chapter for Case Management.
28.1 Introduction
Care of the neurosurgical intensive care unit (NICU) patient is more than managing the clinical situation. There are numerous areas that are just as important and must be attended to, particularly communication. Communication should not be left for health care workers to learn on their own; it must be part of the neurosurgical curriculum. The recommendations in this section have been developed over time, using the expertise of countless clinicians.
This chapter outlines the definition of communication in the NICU setting, along with the goals of communication and its role in relationship building. It offers suggestions on dealing with barriers to communication, including hostile patients and their families. Scenarios are presented depicting challenges in communication between medical and allied health professionals and NICU patients and their families. Additionally, circumstances requiring specialized protocols for communications are discussed.
28.2 Definition of Communication
The broadest definition of communication in this setting is the exchange of information between and among physicians doing neurocritical care, their colleagues, multidisciplinary health care specialists, and patients and their families.1
Physicians cannot function in the NICU outside the bounds of their relationships with staff. The physicians and the multidisciplinary staff of caregivers in the hospital are one unit in a dyad. The cohesiveness of that unit and its ability to converge on a goal in an organized battle array are a matter of planning, dedication, mutual respect, and practice.
Regardless of the patient’s level of consciousness and capacity, the patient cannot be managed and communication cannot be said to occur if the available family members are not taken into account.2The patient and his or her family are the other unit in the dyad. The cohesiveness of this unit is subject to patterns of functioning that began before the crisis centered attention on the patient and will continue, in some manner, irrespective of the patient’s outcome.
The narrow scope of communication for this section is the exchange between physicians and the patient and his or her family. This is the familiar stage for the relationship between the dyads. Communication encompasses all manner of conveying information, but this section will focus on verbal communication and unspoken behaviors that convey feelings encountered during conversations.
The milieu in which the communication occurs, that is, the medical setting, the emergency room, and the NICU, indelibly colors the information conveyed, how it is remembered, and how it is used to make decisions both for patients/families and physicians/health care teams.3
Communication does not occur in a vacuum. The doctor-patient relationship is the basis for communication. The patient and his or her family give and receive information in the context of this relationship, extended to include all of the health care team.
28.3 Goals of Communication
Communication can be said to be achieved when the patient/family and physicians/health care team create a dialogue between each other for the patient’s sake in which questions are asked and answered truthfully, wisely, and respectfully, and the unanswerable questions are acknowledged with compassion, patience, and trust. One-sided conveyance of information devoid of human context may, in some circumstances, seem necessary and appropriate, even if painful, but it is not communication unless it is acknowledged and assimilated.
The goal of communication is fundamentally the exchange of information that might lead to saving the patient’s life or salvaging the disabled patient from ruin, but this goal is accomplished or derailed by the quality of the relationship that develops between patient/family and physicians/health care team as a result of the quality of their communication.
It is not enough to know what has happened or will happen or to be able to say it out loud. The quality of each party’s contribution to communication depends as much on presentation, timing, delivery, and receptivity to feedback as it does on the accuracy of the factual data presented.1,2,4,5
If no one is pausing to listen, then speech is meaningless, regardless of its content. Silence can be the ultimate in communication if it is shared. ► Table 28.1 and ► Table 28.2 outline the premises underlying communication and the type of information needed by the patient and his or her family. ► Table 28.3 lists the three main sources of stress—the environment, the patient, and family factors.
Table 28.1 Premises underlying communication between the health care team and patients and their families1,6
All communication is filled with concerns for the risks of death or disability.
A common vocabulary, shared context, and shared set of expectations between physicians and patients and their families must be crafted, not assumed.
Medically logical priorities are unlikely to match family priorities.
Opinions concerning goals, values, and quality of life must be explored, not assumed.
Trust and respect between physicians and patients and their family have to be reciprocal; they must be earned and returned.
Communication begins with the first staff member the patient and his or her family sees: there is no second chance to make a first impression.
Loss of identity/loss of control/altered future/dependency
Coma
Paralysis
Death
Table 28.3 Sources of stress for NICU patients and their families3,6,7,8,9,10,11
Environment
Unfamiliar sights/sounds, unfamiliar activities and fast pace, isolation, separation, waiting, friction with staff/changing staff assignments, communication failures and delays, hunger/thirst, sleep deprivation, hygiene, lack of privacy, no place to store things
Patient
Altered appearance of patient by trauma, disease, or surgery; unfamiliar behavior of patient; unfamiliar tests and procedures, loss of identity; loss of recognition by family; concerns about the future
Family factors
Siblings’/other family members’ demands, parental role revision, conflicts for control between spouses and parents, role revisions within the family, career concerns, travel concerns, financial stresses, geographic distance from support systems, discharge planning, future family economic and support issues
28.4 The Relay of Information
Before any information can be communicated, primary to even the message itself, communication theory dictates that there is a hierarchy of factors that must be met appropriately for the context of conversation. Primary to all, from Shannon’s theory, is the source of information. This element of communication is that which drives the rest. The source of information in the context of our discussion must be premised in objective findings including imaging, laboratory investigation, objective physical findings, and, to some degree, clinical acumen and experience.
Next is the sender. This is the person doing the delivery of information. In Aristotelian communication theory, this was referred to as the orator or speaker. If the sender is available, affable, and authoritative, there is a higher likelihood that the message will be assimilated. Conversely, if the sender is brusque, speaks at a level above the understanding of his or her audience, or does not communicate the right message with the right source, the message will be lost.
The subsequent level of hierarchy is the channel. This, according to Shannon’s theory of communication is merely the medium used to transmit the signal from the transmitter to the receiver. Specifically, this means that the channel can be anything from nonverbal cues to direct verbal communication inclusive of telephone conversations, e-mail, text messages, letters, and the like. The exact selection of the channel, however, becomes critically dependent on the message, which will be addressed shortly. The receiver, as mentioned previously, is not, in point of fact, the person or persons to whom the sender wishes to convey information in the form of the message—this would be the destination. The receiver is an intermediate step between the channel and the destination that performs the inverse function of the sender insofar as it decodes and reconstructs the message for the destination. In the framework of health information delivery and family communication this may be the appointed family representative, a translator, a trusted nurse, a member of a palliative care team, or others who might facilitate transmission.
Last there are the concepts of feedback and positive and negative entropic elements. Without feedback that necessarily proceeds in the reverse of the original missive along the communication pathway, the source and sender cannot know what, if anything, or how much of the message is understood and accepted by the patient or family. Entropy, as is accepted from the laws of thermodynamics and readily adapted for communication, is the natural state of affairs, and therefore communication has an affinity toward entropy. Without strong guidance from the source and sender as well as aid from the receiver, the message will be garbled and misinterpreted or lost altogether. To summarize, by Shannon’s theory, the components of effective communication are the source, sender, channel, receiver, destination, message, feedback, and positive/negative entropy. Each piece of this hierarchical approach to communication must be addressed in order for the message to be successfully delivered to its appropriate destination.
28.5 Factors Affecting How Information Is Transmitted and Received
Communicating with the patient and family begins and grows by getting to know them. This applies to the health care team as much as it relates to the patient and his or her family.
Data gathering that may hold the key to reaching a patient or family member begins on the first meeting, is supported by the impressions and information gathered by the remainder of the health care team, and continues to expand as the relationship with the patient and family deepens. Some considerations to assist with data gathering should be documented in the nurse’s intake sheet. ► Table 28.4 outlines the basic information that should be gathered in the first meeting. ► Table 28.5 lists the positive and negative coping mechanisms that can be anticipated. ► Table 28.6 and ► Table 28.7 give examples of charged words and behaviors, respectively.
Refraining from examining or touching or carrying out other activities while listening denotes focus and implies that what is being heard matters to the one listening
Posture/position
Sitting down and taking steps to ensure privacy or to protect the conversation from interruption indicate commitment to listening and receptiveness to what is said; standing implies a time limit unless it is at the bedside
28.6 Techniques for Dealing with the Hostile Patient/Family
Appropriate professionals should address any threat of violence and make preliminary efforts to resolve the conflict. The physician may be dealing with the aftermath of others’ interventions or with patient’s or family members’ refusal to proceed with needed care/procedures. ► Table 28.8 outlines actions and suggested approaches to dealing with the hostile patient or family members.
Table 28.8 Approaches to dealing with hostile patients and their families
Action
Patient and family present
Family present without patient
Act quickly
Find out precipitating factors from others first; call for help if violence is threatened.
Same; delegate other commitments quickly to limit interruptions.
Find privacy
If the patient is stable, unite the angry patient or family members with < 10 key family members.
If patient cannot be included, unite <10 key family members separately in a private place.
Enlist support
Have another health care professional present while defusing hostility.
Have a staff member listen in; enlist key family members to assist.
Acknowledge the anger, then redirect to focus on the patient
Opening ploy acknowledges the stressor, validates the patient’s or family’s feelings without admitting fault, then diverts attention back to the patient.
Indicate willingness to deal with the trigger for the hostility after the patient/family has been updated and the patient’s acute needs are addressed.
Avoid the quarrel
Use nonverbal cues to give impression of openness. Use words to confirm your authority and dedication to the patient’s critical medical needs.
Same. Postpone issues not directly related to the patient’s survival (e.g., visitation) to be handled as promptly as possible by others more appropriate to the task.
Commit the time; leave an impression of focus, competence, and caring
Limit discussion of what provoked the hostility to information gathering. Defer negotiation about those circumstances to appropriate channels. Avoid making promises or “bribing.” Lead by example, away from hostility and away from unreasonable demands.
Detach from the problem, not the people. Display willingness to incorporate their concerns into how things are done (without agreeing to favors/privileges that are not your purview to permit).
28.7 Barriers to Communication
Language differences can cause many problems in communication, both with patients and with their families. This should be addressed by hospital policy using available translators/services in the hospital, the community, or the Internet before the communication problem arises. Communicating via signs and single words by health care providers unfamiliar with a patient’s native language may be all that is possible in a crisis, but this practice is to be avoided and never accepted as a habit. Furthermore, the provider must be cognizant of the stages a patient must pass through to cope with devastating news. One of the most classical stratifications of the grieving process is the Kübler–Ross model outlined below.
Denial. In this stage, the patient and/or family will react with disbeliefand either cling to false hope in careless or vague statements made by any member of the care team. They may also simply disbelieve what has been told to them.
Anger. Once denial has run its course or has proved futile, the next KüblerRoss stage of grieving involves frustration and oftentimes lashing out. Typically, this is directed at proximate individuals, including not only the care team, but the patient’s own loved ones, or the loved ones may be angry with the patient for life choices that have led to the situation in which the patient now exists.
Bargaining. The third Kübler–Ross stage involves the notion that an individual can negotiate avoidance of grief. In this stage, the griever will often attempt to exchange a reformed lifestyle for an extension of life.
Depression. This is occasionally the most evident stage of grieving, but not necessarily so. In this stage, the griever will often refuse visitors, spend much of his or her time being mournful and sullen, and may become silent and, thereby, incommunicative.
Acceptance. The final Kübler–Ross stage of grieving in which the individual embraces either inevitable mortality or an immutable future. Anecdotally, it is often seen that the dying individual precedes the survivors in this state. This state is often accompanied by a calm, introspective insight and stable emotions. It is in this state, perhaps obviously, that the griever is most receptive to communication by the health care and ancillary teams.
The chronic absence of family members for meetings may be addressed by social workers and discharge planners; in a crisis, law enforcement agencies may need to be contacted. The hospital should have protocols to facilitate two-physician consent for emergency procedures. This should include involvement of social services and hospital administrators for documentation purposes.
In some cases, families impose demands for special favors that present unique challenges to hospital staff and social services. Physicians can become part of the problem if they make promises to the family that others must cope with keeping. “Bribes” and “rule bending” for patients and families reinforce the family’s worst fears about the severity of illness and undermine the family’s confidence in the health care team to solve the patient’s difficulties. Nothing is as reassuring as “business as usual.”
28.8 Challenges in Communication: Scenarios
There are certain situations that reveal the challenges to communication between health care workers and NICU patients and their families. ► Table 28.9, ► Table 28.10, ► Table 28.11, ► Table 28.12, ► Table 28.13, and ► Table 28.14 offer practical applications of communication skills. ► Table 28.9 gives pointers on what to expect at the first meeting between the physician and the patient’s family. ► Table 28.10 presents the scenario of a patient’s death and what the medical team can do to ease the situation. ► Table 28.11 gives the case of a patient presenting in decompensation. ► Table 28.12 offers suggestions on possible interventions when a patient arrives unstable and worsens. ► Table 28.13 distinguishes among situations in which needs are not being met and gives basic suggestions on how to meet those varied needs. Finally, ► Table 28.14 addresses the situation in which a patient’s recovery is prolonged by further complications.
Table 28.9 Initial meeting between the health care team and the patient and his or her family5
The doctor says…
The patient/family hears…
The doctor approaches the family and engages the attention of all before speaking.
Something important is about to be said by a person of authority who cares about whether he or she is heard.
The doctor introduces him- or herself by name and demands the identities of his or her audience, sets the stage for a family spokesperson to emerge, or appoints one.
Distinguishing who is listening and the physician’s relation to the patient is a way of acknowledging authority in the family and can be seen as respect; where there is already dissension, this may polarize family members.
The doctor summarizes the patient’s state (two sentences) and interrupts him- or herself to gather baseline data, enlarges on the patient’s likely diagnosis and prognosis, then opens the floor to questions. OR
Family will infer that crisis is under control and will respond to overture to tell about the patient and themselves in ways depending on their level of stress and past functioning as a family.
The doctor launches into a summary of the patient’s status and current, emergent needs, postpones questions, gets consents for ongoing procedures, indicates what is likely to occur shortly, and leaves. OR
Family will infer that patient’s crisis is not contained. If vocabulary is kept simple and the choices offered are straightforward, the family may accept data at face value. If the family hears condescension or is culturally or historically conditioned to expect neglect and exploitation, the family may be angered.
The doctor summarizes the patient’s status, current needs, and likely progress; introduces other staff members who will report to the family; estimates when the family can see the patient, gets consents for needed procedures; and departs. OR
Same as above, but the family is likely to respond positively to the promise of ongoing reports by people that the physician approves and the hope of seeing the patient at some specified time in the future.
The doctor or representative uses terminology that the family cannot comprehend, does not introduce or condone liaison personnel, and leaves without ascertaining if he or she has been understood.
Family may assume that the patient’s crisis is so severe the physician or representative has no time for them or that the physician does not care about them or the patient. Families with past trust issues may become hostile. Families will conjecture and reinforce erroneous assumptions to cover knowledge deficits.
Table 28.10 Communication approaches when the patient dies5
The family sees…
The medical team sees…
Possible interventions
Family arrives after the patient is pronounced dead. Family confronts outcome with shock.
The patient is assessed, and appropriate management is offered. Physicians and staff disperse to care for others. Appropriate agencies are contacted.
Emergency room liaison personnel succor family while waiting for physicians to return to the scene; the family sees the patient after being updated and after staff has prepared the patient for viewing.
Family members arrive during resuscitation but are denied access to the patient. They confront the outcome with shock and rage.
The patient is assessed, and appropriate management is offered. Liaison personnel are not present to facilitate involving family, or a communication failure occurs, so the team is unaware that the family has arrived, or the family’s presence is deemed unwise.
Best case: Physicians and liaison personnel meet the family first, re-create events, answer the answerable, and empathize with the loss. Referrals to appropriate agencies are made. Worst case: Family members are exposed to the dead patient without preparation and without ready access to those best able to explain what happened.
Family arrives during resuscitation and has access to the bedside before the patient dies. Family is exposed to the resuscitation process. They confront the outcome with varying degrees of shock.
Constraints imposed by the family’s presence do not excessively hinder a practiced team. Resuscitation proceeds with all team members performing as best as possible.
Ideally, staff liaison is continuously present and attends to the family’s needs while preventing interference with resuscitation efforts. Worst case: Family members intrude, pose a threat to resuscitation providers, affect the outcome of the resuscitation, and due to a lack of medical knowledge believe that something was done wrong, blames the health care team and destroys the relationship.
Table 28.11 Communication approaches when the patient presents in decompensation5
The patient/family sees…
The medical team sees…
Possible interventions
Catastrophic injury/illness make shocking changes in self or loved one.
Disease or trauma impacts on patient’s immediate chances of sustaining life.
Staff and physicians share a duty to describe what they see, what they want to change, and how they will go about it.
Assessment and resuscitation look chaotic to the already frightened family and patient.
Systematic application of protocols by a professional team working under pressure
As above. Use “Good/better/not as good” to update and avoid statistics or interrupting care to explain. Use liaison personnel.
Initial damage and uncertain progress in self or loved one inspire fear of lethality or permanent disability.
Results of examinations, indicating diagnosis, current status, response to treatment, and ultimate prognosis, are obvious.
As above. Ask family for opinions, then counter with accuracy. Give frequent updates, and quickly introduce senior physicians and staff.
Family has one person or a few people who appear in charge and worth listening to.
A hierarchy of authority is based on training and skill set; many are capable of providing information.
Team defers to leader, and leader reinforces confidence in team.
Unexplained delays/unexpected changes in plans/inadequate explanations seem evasive.
Resuscitation is carried forward in a setting where many compete for the same resources and the attention of the same staff.
Avoid excuses; explain delays as soon as possible. Provide reassurance. Staff should give family a role in supporting the patient.
Table 28.12 Communication approaches when the patient arrives unstable and worsens3,5,6,7,8,9,10,11
The patient/family sees
The medical team sees…
Possible interventions
Limited access of the patient to his or her family is offered.
An unstable patient is isolated for his or her protection.
The health care team repeatedly explains to, empathizes with, but always protects the patient.
Strangers converge and do inexplicable or painful things to the patient.
Necessary procedures are done to preserve life by people who should but may not identify their purposes to the family.
Physicians respond with increased opportunity for the family to vent and for doctors to update. The team shares the opportunity to assess pain control needs with the family.
Contradictory information or no information is conveyed to the family; the “wrong” person is contacted, making the information conveyed suspect; information conveyed is too technical to be absorbed; communication with a recognized authority is too sparse or contaminated by the family’s hostility; and individual dynamics foster denial.
Confusion follows when caregivers fail to communicate with each other; when individuals communicate who incorrectly assume a common knowledge base; when information changes as it passes between staff or family members; when the patient deteriorates so rapidly that it is impossible to adequately prepare and sustain the family. The foregoing is exacerbated by preexisting family dysfunction and socioeconomic or cultural considerations. Further complications from unrelated stressors are imposed on the staff.
Impromptu multidisciplinary rounds with available staff and key family members are done so that “everybody is heard and everyone hears the same thing.” A family spokesperson and team spokespersons are identified. Referrals are made to appropriate support specialists. Ongoing multidisciplinary rounds are made with the family present, and increased scheduled opportunities are provided for the family to connect with attending physicians. The chain of command is reinforced. Physicians validate the staff.
Table 28.13 Communication approaches when needs are not being met5
The patient/family sees…
The medical team sees…
Possible interventions
Emotional needs are not being met.
Lack of leadership, failure to accommodate between specialists, lack of team cooperation.
Same as in ► Table 28.12, but increase the frequency of family updates.
Staff members recognize the probable grim outcome and distance themselves from patient/family; the staff withdraws from the increasingly dependent, demanding family; the family exhausts the staff’s emotional reserve.
Physical needs are not being met.
The hospital is unable to provide food, sleeping accommodations, and privacy to meet family demands, whether appropriate or not.
Emphasize role of authority figures in all disciplines. Physicians in authority must demonstrate confidence in bedside caregivers.
Spiritual needs are not being met.
Staff lacks direction and cohesiveness; gives the impression of lost hope, lost motivation, or dissension among themselves; is unable to hide the same from the family; and is exacerbated as the family spirals out of control.
The health care team must meet separately to support themselves, cope with the looming loss of the patient on their own terms, and recover lost momentum in dealing with the patient’s and family’s crises.
Patient and family are dissatisfied regardless of the outcome.
Physicians and staff caregivers are dissatisfied regardless of the outcome.
Social services representatives appeal for funds to sustain an indigent family in crisis. The family is counseled regarding available resources. The hospital regains a limit-setting role for the safety of patients and staff. The family is treated with respect but with appropriate limit setting. Physicians lead by example, supporting both the team and the family realistically. Focus groups, including physicians, are appointed to alleviate any remaining tensions and to help participants learn from the experience.
Table 28.14 Communication approaches when a patient’s recovery is prolonged by further complications5
The patient/family sees…
The medical team sees…
Possible interventions
The patient/family is dissatisfied with the patient’s rate of improvement and/or prolonged NICU stay due to complications.
The patient’s and family’s reserves are depleted emotionally, physically, spiritually, and financially.
Physicians insist on and staff facilitate a “timeout” for the family.
The family “settles in,” regaining some control and predictability in their lives measured in the services they can convince others to provide.
Family looks to find fault or place blame: something is owed them because “this shouldn’t have happened in the first place” and “why can’t this be over?”
A dependent relationship becomes ingrained. The family is perceived as ungrateful and increasingly demanding because they assume ongoing privileges granted earlier when the patient was more acute, or because they manipulate relationships that divide the staff, or because they impose preferences on patient care that increase staff work, or because they require reassurance very frequently or at inappropriate or inconvenient times.
Senior staff chair multidisciplinary meeting first without, then with, the family to address the new structure with new privileges, new responsibilities, and new roles for family members. Physician involvement is key to helping predict patient progress and to better assist bedside caregivers in redefining the family’s relationship with the health care team.
“Someone is not telling us something.”
Staff perceives that communication is treated with suspicion, that the family exploits any discrepancies in communicated content or communication delivery, that there may be dissension in the family; that the delay in good news is leading staff to avoid confrontation and perpetuating the family’s impression that they are being left out
“Something finally gets better.”
Best case: Events lead senior nursing staff and physicians to resume a leadership role, confirm patient’s status and progress in unambiguous terms, set limits on special privileges demanded by the family in supportive fashion, and recover mutual respect.
“Something gets worse.”
Worst case: Whether or not the patient worsens, the family attitude worsens, the family withdraws or behaves with hostility toward the staff, and the hospital administration steps in to arbitrate.
Table 28.15 Perspective: what patients and their families need from physicians and nurses
Honesty: tell the truth; tell it when you know it; admit it when you don’t
Predictability, dependability, availability
Compassion
Open-mindedness and a willingness to learn
Knowledge, wisdom, and a willingness to teach
Skill
The role of physicians and the health care team in relationship building with NICU patients and their families can be complicated. ► Table 28.15 lists what is needed of physicians and nursing staff from the perspective of the patient and family. These needs should be the focus of the health care team.
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9 Homeostatic Mechanisms in the Neurosurgical Intensive Care Unit Patient
8 Sedation and Pain Management in the Neurosurgical Intensive Care Unit Patient
7 Delayed Intracerebral Hemorrhage
22 Anticoagulation and Antiplatelet Therapy in the Neurosurgical Intensive Care Unit
21 Cerebral Microdialysis in the Neurosurgical Intensive Care Unit
