Family Communication

Family Issues

31 Family Communication

Theresa Longo and Dan Miulli

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 the health care worker to figure out; it must be part of the neurosurgical curriculum. The recommendations in this chapter have been developed over time, using the expertise of countless clinicians.

The 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.

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.

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. The 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 chapter 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 chapter 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 team.

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.

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 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.

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. Tables 31–1 and 31–2 outline the premises underlying communication and the type of information needed by the patient and his or her family. Table 31–3 lists the three main sources of stress—the environment, the patient, and family factors.

**Table 31–1** Premises Underlying Communication between the Health Care Team and Patients and Their Families
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 staff member the patient and his or her family sees: there is no second chance to make a first impression.

**Table 31–2** Patient Situation Preventing Meaningful Communication
Loss of identity/loss of control/altered future/dependency
Coma
Paralysis
Death

**Table 31–3** Sources of Stress for NICU Patients and Their Families
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

**Table 31–4** Initial Family Information to Gather
Coping mechanisms the physicians want to encourage versus coping strategies patient/family already use
Health and emotional condition that the patient/family arrives in, including the presence of family members with disabilities
Patient’s/family’s immediate resources for self-care (psychological, social, monetary, and access to transportation)
Socioeconomic and educational background of patient/family
Cultural and religious precepts/prejudices/preconceptions
Availability, dedication, proximity, and strength of extended support system, including sympathetic employers
Chemical dependency of both patient and family members, including tobacco

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 his or her family deepens. Some considerations to assist with data gathering should be documented in the nurse’s intake sheet. Table 31–4 outlines the basic information that should be gathered in the first meeting. Table 31–5 lists the positive and negative coping mechanisms that can be anticipated. Tables 31–6 and 31–7 give examples of charged words and behaviors, respectively.

**Table 31–5** Coping Mechanisms the Family Is Likely to Use
Positive	Negative
Leaning on others for support	Clinging to the patient/refusing to leave the bedside
Reliving the events that led to the crisis	Probing events/questioning information/intellectualizing
Acting strong and competent	Putting on a show of confidence and strength
Blaming themselves or others	Focusing on trivial issues to avoid greater issues
Comparing their plight to those in worse straits (relief)	Exaggerating their circumstances to see themselves as heroes or martyrs
Rehearsing for death	Clinging to inappropriate hope

**Table 31–6** Words That Can Be Misunderstood
Death/dying	Coma	Disability
Dependence	Consciousness	Paralysis
Pain/suffering	Communicate	Rehabilitation
Anxiety/fear	Control	Vision/hearing/speech

**Table 31–7** Charged Behaviors That Take on Enhanced Significance for Patients and Their Families
Behavior	Significance
Looking	Eye contact or equivalent denotes focus, connectiveness, attentiveness, respect
Listening	Nodding, facial expressions, taking notes (and looking up) denote receptiveness
Touching	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

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 31–8 outlines actions and suggested approaches to dealing with the hostile patient or family members.

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.

**Table 31–8** 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).

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.”

Challenges in Communication: Scenarios

There are certain situations that reveal the challenges to communication between health care workers and NICU patients and their families. Tables 31–9 through 31–14 offer practical applications of communication skills. Table 31–9 gives pointers on what to expect at the first meeting between the physician and the patient’s family. Table 31–10 presents the scenario of a patient’s death and what the medical team can do to ease the situation. Table 31–11 gives the case of a patient presenting in decompensation. Table 31–12 offers suggestions on possible interventions when a patient arrives unstable and worsens. Table 31–13 distinguishes among situations in which needs are not being met and gives basic suggestions on how to meet those varied needs. Finally, Table 31–14 addresses the situation in which a patient’s recovery is prolonged by further complications.

The role of physicians and the health care team in relationship building with NICU patients and their families can be complicated. Table 31–15 lists what is needed of physicians and nursing staff from the perspective of the patient and his or her family. These needs should be the focus of the health care team.

The Health Care Team

It would be ideal if physicians and nurses could meet all of the needs of patients and their families. In real life, though, no one can be all things to all patients at all times. Physicians and other members of the health care team, working together, can create a composite, well-orchestrated program to fulfill the needs of most people. Tables 31–16 and 31–17 address the team approach to communication.

It is the responsibility of the primary service, from attending physician to intern, to establish the credibility and importance of the entire network of health care providers in the critical care setting as sources of information for the patient and his or her family.

Nurses need to hear what the family hears. At least daily, the physicians guiding minute-to-minute care in the unit should define, with the chief bedside caregivers, the content to be shared with the family by all health care team members. Nurses will choose how to transmit information according to gravity and complexity of data and by competency of the communicating caregiver, and share the responsibility with respiratory therapists and others. Ideally, there will be planned (weekly) and impromptu multidisci-plinary rounds, with and without the patient and family in attendance, in which the team as a whole assimilates and adapts to the patient’s changing condition, then formulates a presentation to share the information with the family.

**Table 31–9** Initial Meeting between the Health Care Team and the Patient and His or Her Family
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 himself 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 (2 sentences) and interrupts himself 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 is 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 31–10** Communication Approaches When the Patient Dies
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, and are removed.

Nurses, therapists, and others with the greatest access to the patient and family have the burden of ongoing education and minute-by-minute reinforcement of information already provided to the patient/family. Nurses and others with bedside care responsibilities will not act as independent entities but as contributing members of an organized whole whose opinions will be assimilated into the overall plan discussed with the patient/family.

All health care providers should feed back patient-related information to the primary physician team and wait for the team’s directions regarding sharing that data with the patient/family.

**Table 31–11** Communication Approaches When the Patient Presents in Decompensation
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.

The burden of telling all and the responsibility for coordinating and ameliorating the patient’s/family’s exposure to dissenting opinions are privileges earned by the primary team of physicians through their responsiveness to new data, new questions, and new concerns brought to their attention by their physician consultants, by nurses, and by all other representatives of caregiving disciplines contributing to the patient’s ultimate outcome.

The burden of absorbing and acting on the implications of the patient’s current and future status belongs to the patient and family: the greatest gift the medical team may offer is to influence how that burden is conferred (Tables 31–18 and 31–19).

Be prepared to supply family members with a frame of reference to help them assimilate the information they are about to receive. Reinforce that frame of reference as a foundation for continuing communication throughout the patient’s course of treatment (Tables 31–20, 31–21, 31–22, and 31–23).

**Table 31–12** Communication Approaches When the Patient Arrives Unstable and Worsens
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.

It is assumed that all appropriate medical workup has been done to confirm the diagnoses and prognoses leading to this decision point. For purposes of this discussion, it is assumed that there is no advanced directive, no living will, and no written documentation of the patient’s wishes. The approach to the family is then predicated on agreement or acceptance that withdrawal of support or withholding cardiopulmonary resuscitation (CPR) seems ethical, legal, reasonable, respectful, and compassionate to the members of the health care team. It is assumed that all proceedings will be in keeping with hospital policies regarding bioethics committees, and so on. If consent is sought to withhold resuscitation or deny CPR, the procedure with the family then follows the pattern outlined in Table 31–24.

**Table 31–13** Communication Approaches When Needs Are Not Being Met
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 31–12, 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 31–14** Communication Approaches When a Patient’s Recovery Is Prolonged by Further Complications
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 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 31–15** 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

**Table 31–16** Communication: It Takes a Team
Foundation	The team approach is hierarchical, discriminatory, and privileged.
Authority	The chain of command begins with the attending neuro- or trauma surgeon, descends through resident physicians, ramifies through physician consultants, and burgeons to involve nurses, respiratory therapists, and specialists and technicians of ancillary disciplines, inclusive of appropriate hierarchies per discipline.
Sourcing for dissemination of information	The NICU team sets the tone and controls the flow of information through all contributing health care providers by making sure that the information they want communicated is disseminated to the health care providers with the greatest, most frequent access to the patient. Daily rounds are done with nursing staff. A chart or phone contact is kept with consulting physicians.
Choreography for emergencies	Communication during resuscitation should begin via trained liaison personnel who educate and support families per protocol and by rote according to stages of resuscitation identified by the resuscitating physicians.
Postresuscitation	There should be impromptu, frequent meetings between neurosurgeons, consultants, and family at bedside or with nursing staff, including ongoing support from liaison personnel.
Routine care program	Daily updating of staff and family will be by bedside rounds with nursing and multidisciplinary meetings that involve the neurosurgeons, physician consultants, nurses, respiratory therapists, rehabilitation and other services, the patient, and his or her family.

**Table 31–17** Team Approach to Communication: Guidelines for Team Members
Individual members represent the team; the team incorporates all; what each one says should reflect what the team is conveying as a unit.
Information disseminated by team members should conform in content and implication: the patient/family should not get mixed or conflicting messages.
The ultimate resource should be the primary physician service; dissension should be shared within the team, not the patient or the patient’s family.
Substantive information conveyed should be restricted by scope of practice. Any team member should be able to convey empathy and concern.
When confronted with a question he or she cannot answer, the team member should admit it and refer the question to the appropriate resource.
All team members owe mutual respect and respect for the team as a whole; promoting confidence in the team is the job of every team member.

**Table 31–18** Practitioners Who Should Be Incorporated into the Health Care Team
Discipline	Sphere of influence
Physicians	Ultimate information source; center for assimilation of new data from other disciplines; the “authority” that the patient/family will recognize
Nurses (and trained liaison personnel)	Ultimate implementers of any treatment plan; ultimate disseminators of information because of their greater access to patients and families; primary resource for monitoring; the first and the last to touch the patient and family; the “authority” that the patient and family needs to recognize
Therapists: respiratory, physical, occupational, speech, nutritional, and, to lesser degree, technical specialists throughout the hospital	More limited scope of access and practice but convey information relevant to their areas of concern; the harbingers of change in the patient’s condition, the “authority” that the patient and family will look to for new hope
Social workers, case workers, discharge planners, child life specialists, clergy, hospital administrators	Ultimate implementers of plans that hinge on family participation; the authorities that patients look to for their future and families look to for support

**Table 31–19** Communication Approaches Assuming Patient/Family Duress
Assume the patient/family at risk for…	What the health care team member can do…
Fear and anxiety leading to preformed conclusions	Be prepared with appropriate facts.
Attention spans that are likely to be short	Watch for wandering; redirect if needed; be brief.
Poor retention of information	Repeat what matters most and confirm that it is heard.
Distraction by side issues	Ask questions that refocus attention.
Having a secondary agenda focused on comfort, security, and control over their immediate surroundings	Leave time to address appropriate concerns. Show you care. If needed, set the stage for limit setting for inappropriate requests.

**Table 31–20** Making a Frame of Reference
Begin by describing the patient’s baseline appearance to himself or herself and his or her family in simple, easy-to-remember words. Use the primary survey of resuscitation but in layperson’s terms.
Tell the family how you make an assessment (what characteristics and in what order) and what changes would indicate improvement or deterioration. Point to features of the patient that the family can see for themselves.
Introduce the family to medical terms they are likely to hear. Use all of what you’ve taught them to update the family whenever you get a chance.

**Table 31–21** Establishing a Relationship
The Gulf between patient/family and health care team	Bridging the gulf
Assume ignorance of proper use of medical terms.	Avoid medical terms, or define them every time.
Expect a demand for statistics regarding outcome.	Clearly state that statistics refer to population, then explain what they tell us about the patient.
Assume preconceptions about status.	As simply as possible, explain what parameters are assessed and what conclusions have been made concerning the patient’s status; set the stage for the future use of labels “good,” “better,” “worse,” and “unchanged,” and avoid discussing numeric values or monitored data that can frighten family members if they misinterpret them. Avoid the word stable.
Assume a need to “do something.”	Validate the family’s roles as historians, as assistants in ongoing assessments, and as decision makers.
Assume a need to find hope, whether you see it or not.	Remind family members that “everyone knows what normal looks like” and that if something they think is an improvement is real, it will be evident in time.

**Table 31–22** Situations Requiring Special Communication Obtaining Informed Consent
Physicians and nurses should know departmental policy and apply it.
The patient/family should know from the outset that the purpose of the update is to obtain consent for a procedure needed to save the patient’s life/restore functioning/hasten recovery, etc.
Initial approach to the patient/family will be to update them on the patient’s progress.
The need for the procedure should be apparent to the patient/family from the update.
A description of the procedure, including use of visual aids, if available, should follow.
The specific benefits that will be mentioned in consent documents should be discussed next.
A discussion of possible ill effects from the procedure should follow departmental policy and should be comprehensive, but they should be presented in the context of how likely the patient is to experience these difficulties.
Patient discomfort should be addressed, including consent for conscious sedation, if needed.
Patient and family need to know where the procedure will be done, when it will be done, who will do it, how long it will take, and what the arrangements will be to update the patient/family after it is done.
Always remind the patient/family that there are “no guarantees.”

**Table 31–23** Situations Requiring Special Communication: Withdrawal of Support/Do Not Resuscitate
Patient status	Examples
Illness or trauma has led imminently and unavoidably to a terminal condition.	Intracranial hypertension after severe head trauma
Criteria are met for irreversible coma.	Head injury, near-drowning, asphyxia, stroke
Incurable, progressive illness exists entailing intractable suffering and unacceptable quality of life.	Lou Gehrig’s disease, multiple sclerosis
Illness or trauma has led to such severe disability with such poor quality of life that there is no reason to continue artificial means to prolong life or resuscitate from cardiac arrest.	End-stage pulmonary disease in a profoundly brain-damaged patient, as seen in ventricular hemorrhage due to prematurity; brain tumor; stroke; near-drowning

**Table 31–24** A Protocol for Obtaining Consent to Withdraw Support or Withhold CPR
A team of doctors, nurses, therapists, social workers, clergy, and so on, discusses the case in advance and arranges to meet with the family as a group. (Some or all of the team members should attend. Do not send only one person.)
The family is approached by a representative of the group to make an appointment to discuss the consent, with the family arranging for appropriate attendance of its members.
The physician reviews the patient’s case, including the factors leading to the present discussion.
The family and health care team discuss the implications of the patient’s history.
The health care team solicits the family’s feelings about the patient’s likely outcome, about death and dying in general, about what they think the patient would want, about what they would want for themselves, and about how they will want to remember their actions and decisions 10 years in the future.
The health care team answers questions about what the patient will feel and do if support is withdrawn or resuscitation is denied, the mechanics of the process, and how it will appear to the family. The hospital’s documentation for consent for DNR status, including the options to choose some but not all aspects of resuscitation, can be discussed with the family at this point. The family’s wishes on how withdrawal of support should be conducted, whom they wish to have present, and so on, can also be discussed now.
The family is given a time frame in which to carry on the discussion in privacy and return a decision. Meetings are arranged and repeated with appropriate/selected members of the health care team until the family delivers a decision.

CPR, cardiopulmonary resuscitation; DNR, do not resuscitate.

A patient who is declared “brain dead” per protocol (see Chapter 28) is removed from life support because he or she is dead. No consent is necessary. The family should be informed with all possible compassion and sensitivity. The timing may be set to accommodate family wishes within reason.

Summary

No illness or injury carries a greater potential for loss of one’s identity and perspective on one’s environment than injury or illness of the brain or spinal cord. A patient whose critical illness arises from damage of the central nervous system is a person at risk of dying, but also at risk of never being the person he or she was again, or at risk of never being the person he or she could have been. Every interchange between the physician and patient or the patient’s family in this setting will be overshadowed by these implications. Attempts by the physician or layperson to focus on any finite detail and exclude the greater context is likely to lead to confusion and friction between and among physicians, other health care providers, family members, and the patient.

The physicians trying to save the patient’s life and preserve his or her abilities have a duty to explain what they are doing, why, and what is likely to happen next as best they can. The duty is shared with the remainder of the health care team to a degree in keeping with the potential to affect outcome that accompanies their skills, knowledge, or authority. All share the complementary duty to acknowledge, process, and respond to what the patient and family express after they hear what the prognosis and progress are likely to be.

The patient and his or her family have a duty to provide a history that will help delineate the cause of the patient’s catastrophe, and they have a duty to convey what the patient was like before his or her illness or injury occurred. Most of all, they have an obligation to listen, process what they hear, and provide feedback on what they have heard. Ultimately, they will be responsible for coping with the aftermath, including death or disability.

Neither the physicians nor the patient and his or her family will see the patient’s illness in the same context. It is up to the physicians and the team of health care providers surrounding and supporting the patient’s care to bridge the gap in understanding between themselves and the patient/family.

The patient and family are one: the patient’s crisis separates him or her from the life to which medical care endeavors to return the patient. This goal cannot be accomplished unless the context of the patient’s life before his or her crisis is fully appreciated.

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