Breaking the News in Spinal Cord Injury

Abstract

Summary:

Breaking the bad news in terms of prognosis for significant motor recovery following a neurologically complete spinal cord injury (SCI) is one of the most difficult tasks for the spinal cord medicine specialist. Learning the skills to facilitate this communication is extremely important to better assist patients to understand their prognosis as well as foster hope for their future. If bad news is delivered poorly it can cause confusion and long-lasting distress and resentment; if done well, it may assist understanding, adjustment, and acceptance. This article provides the physician who cares for patients with SCI with some concepts to consider when discussing prognosis with patients and their families.

If the breaking of the news is done badly, patients and their families may never forgive us; by contrast, if we get it right they will never forget us. (1)

INTRODUCTION

Spinal cord injury (SCI) is considered one of the most devastating injuries one can experience (2). People suffer a traumatic and unexpected loss, with permanent consequences that affect every aspect of their lives (3). Prognosticating outcome from a traumatic SCI is of great importance to the patient and family, as well as the treating rehabilitation team, in order to plan realistically for the future following discharge from rehabilitation (4). The prognosis is poor for significant lower limb motor recovery after a neurologically complete traumatic SCI in the cervical and thoracic levels, as defined by the International Standards for Neurological Classification of SCI (5,6). Communicating this “bad news” to persons who sustain a SCI and their families is not an easy task and often provokes distress in the clinician who deals with “breaking the news.”

Some physicians may feel that discussing the poor prognosis for motor recovery with an individual soon after injury may be a source of depression or anxiety that may in turn affect the person's willingness to participate in comprehensive rehabilitation. There are no data to support this and moreover, in other patient populations (eg, oncology), the perceived adequacy of the information patients receive and the success with which the clinician is able to elicit and resolve their concerns may be predictors of developing a depressive and/or an anxiety disorder (7). When it comes to medical issues, withholding bad news in an attempt to protect the patient from the truth is usually an error and reportedly often arises from a desire to protect the holder of the information (8).

However well a negative prognosis is addressed, it is bound to leave the patient with major concerns about his/her situation, which may be physical, social, psychological, vocational, or spiritual in nature. Failure to explain the diagnosis and prognosis in a clear manner may interfere with patients' process of coping and reduce their subjective well-being (9). Uncertainty causes emotional distress, so relief from uncertainty may be therapeutic (10). Gratitude, peace of mind, positive attitude, reduced anxiety, and better adjustment are benefits that people report from having been told their prognosis, even if the news was negative. The manner in which bad news is delivered and discussed can have a significant impact on the patient's perspective of illness, compliance with treatment, and long-term relationship with the clinician, as well as both patient and provider satisfaction (11–15).

A similar communication dilemma is experienced in other medical specialties, most notably oncology. The oncology literature reports that approximately 80% of patients want to know the details regarding their prognosis, whether that prognosis is good or bad (11,12,16). Oncologists reportedly are more frank with patients who have better prognoses (17), and this is most likely the case in traumatic SCI, as well. The SCI clinician is often eager to share a “good prognosis” with the patient who has a neurologically incomplete injury, often even without being asked by the patient.

No literature has been identified regarding how to discuss the prognosis, that is, breaking negative prognostic news effectively to a person who has suffered a neurologically complete SCI. A search was conducted using the MEDLINE (1966–2006), CINAHL (1982–2006), and PsychINFO (1967–2006) databases to identify pertinent citations. The search strategy was modified to incorporate key words of relevance since the term “bad news” is not a subject heading in any of the databases searched, but no articles were identified.

The goal of this paper is to outline techniques regarding the manner in which to discuss the prognosis in this situation. It should be noted that there may be no ideal method of breaking the news, and differences in approach might be appropriate based upon individual clinician styles and institutional setting, as well as the patient's background, education, culture, gender, age, and life situation. These recommendations are based upon our clinical experience and personalities, as well as recommendations adapted from the general medical and oncology, nursing, psychology, and end-of-life literature.

BREAKING THE NEWS

The physician's communication of the prognosis to the patient involves much more than the simple transmission of information. The majority of practicing physicians report having received little to no formal training in effectively communicating bad news (13,18,19). Consequently, most physicians complete their medical training equipped to provide high-quality technical care but may not be prepared to discuss information regarding a poor prognosis. There are some guidelines and recommendations for physicians regarding communicating bad news to patients in other diagnostic groups. (22–26). Rabow and McPhee recommend the mnemonic of ABCDE to remember the key elements of this discussion: Advanced preparation; Build a therapeutic environment; Communicate well; Deal with patient and family reactions; and Encourage and validate emotions (22). Although no set of recommendations is optimal in all situations, certain generalizations for physician organization and environmental structure may help in the majority of cases. An overview of recommendations to facilitate communication is presented in Table 1.

Table 1.

Summary of Key Elements for Discussion

Who

Discussing the prognosis with the person who has suffered a traumatic SCI is the responsibility of the senior (most experienced) physician involved in the case and preferably, should not be delegated to other members, including residents or medical students. Leading these discussions is an earned privilege of the caring and experienced SCI physician. The presence of house staff, however, should be encouraged in order for them to gain experience in this area. Investment and commitment of the time to communicate properly with the patient carries with it the future opportunity to share in the most meaningful experiences in the lives of patients with SCI and their families. The physician should be able to deliver the information in a sensitive manner but also have the knowledge, ability, and willingness to answer the difficult questions that often follow.

Often, the patient with a SCI develops an excellent rapport with particular members of the treatment team (ie, a therapist, psychologist, or nurse), and may pose prognostic questions to him or her. The patient should be referred to the attending physician, and the staff member should alert the physician that these questions have been raised.

Where

Ideally, communication regarding prognosis of neurological recovery should take place in a private and quiet setting. One should ask the adult patient if he or she wishes to have a relative or friend present. Significant others may ask questions on behalf of the patient or offer support when difficult issues are revealed. The presence of others, however, may prevent the patient from disclosing key concerns in an effort to protect them from undue stress. The physician might consider talking with the patient first and then having the family present to review the prognosis and answer unresolved issues.

When possible, the physician should try to have another member of the professional staff present during this discussion. This person can be a nurse, psychologist, social worker, case manager, or another staff member whom the patient can access for support and supplementary information after the discussion is completed. If time constraints do not permit another staff member to be present during the conversation with the patient, then someone, preferably a psychologist, should be assigned to follow up at a later time to learn what the person comprehended, the meaning attached, the emotional responses, and the impact the news may have on motivation for rehabilitation.

If the patient and physician do not speak the same language, a qualified and appropriate interpreter is essential. It is preferable not to use a patient's relative to assist in the interpretation as the relative might skew the information to protect the patient and/or himself/herself. A staff member who is part of the caring team or a professional interpreter should be sought. It is often helpful to speak with the interpreter ahead of time to prepare the interpreter as to what will be discussed.

How

As the prognosis for a great deal of motor recovery below the level of injury in a person with a neurologically complete SCI is poor, this must be conveyed with great sensitivity. The physician should take into account a patient's personality, culture, education, age, and other mitigating factors, and watch for his/her emotional reaction. Evidence suggests that the way in which the “bad news” is given can exacerbate or alleviate some of the distress and anxiety associated with the prognosis. For example, abruptly breaking the news to patients with cancer has been found to increase its negative impact (12), while presenting the information in a comforting and sensitive manner can reduce stress and anxiety (11). It is important to accept that the physician cannot completely soften the impact of the news, since it is still “bad” news that is being communicated.

At the time of injury, some patients with traumatic SCI may immediately recognize the consequences of their injuries when they discover that they cannot move or feel their limbs (2,23,24). The SCI physician, especially in the rehabilitation setting, can inquire as to what the patient believes or has already been told about his/her injury. This can help break the ice and offer an opportunity to hear what the patient specifically would like to know. The physician should be aware that the information being given will change the patient's perception from being fully independent to being as “independent as possible” at the wheelchair level. Sensitivity in delivering this message is important and includes communicating the information slowly and clearly and allowing the patient to adapt to the news. Using forewarning words, often called “forecasting,” like “unfortunately” and “I don't have good news to convey” at the beginning of the discussion gives patients a chance to brace themselves and hear the information rather than possibly becoming immediately overwhelmed (27).

Physicians, unless having suffered an SCI themselves, cannot really know the experience of the patient, and therefore should refrain from using statements like “I know what you are going through.” Rather, the SCI clinician may use a phrase such as “I can only imagine how difficult this must be for you.”

The physician who discusses the prognosis with the patient should plan the discussion based upon a mutually convenient time for the patient/family and other staff members who may be present. Participants should be relatively free from disturbances so the pace can be gentle, unhurried, and uninterrupted. The physician should be prepared with the important information that is usually questioned, including the type of fractures, surgery performed, medical complications to date, recent laboratory and radiological test results, and current medical and functional status. Reviewing the initial history and physical examination (including the ASIA neurological flow sheet), as well as recent nursing and therapy notes, is extremely helpful in preparing for questions that most often arise during the conversation.

During the discussion, the physician should be looking directly at the patient and be seated rather than standing alongside the patient or being at a distance at the foot of a bed. While communicating, one should be honest but not blunt. Being blunt leaves patients feeling isolated and angry, often blaming the messenger for the news rather than reacting to the news itself. Information should be delivered in simple and easy-to-understand language, with a limited amount of medical terminology. Any medical terms used should be explained to make sure all that are present have a full understanding.

When discussing the prognosis, the physician should not use phrases that extinguish hope like, “there's nothing more that can be done for you” or “it is a hopeless situation,” as this can cause the patient to feel abandoned (27). When possible, one should use supporting and fortifying statements like, “I/we will do everything possible to help you.” Words like “help” and “assist” convey security to patients and assure them that their physician and treatment team are interested and caring, and will do their best for them. Having access to medical competence that the patient trusts is extremely important.

Although there is significance to the words used in delivering the prognosis, breaking the news to patients involves more than just words. Nonverbal communication is equally important as the actual words chosen. This includes facing the patient, utilizing eye contact, allowing pauses/time for the patient to collect his/her thoughts and to formulate questions, and permitting the patient to speak without interruption. When utilizing an interpreter, one can still convey many nonverbal expressions of caring and sympathy. It is critical that the patient feel that you have the time to talk and listen. Avoid writing notes, reading, or writing in the patient's chart or looking elsewhere while the discussion takes place. Ensure that interruptions such as beepers, telephone calls, and physical intrusions are kept to a minimum.

Often the question of “cure in SCI” arises in this discussion. It should be recognized that there is no cure currently available for SCI and therefore, no easy answers that may satisfy a patient's desire for such. In addition, there are no simple answers or treatments for the fear, anger, disappointment, depression, and mourning the patient/family may experience. However, expressing empathy will help facilitate adjustment to the changes in the patient's world (28). The information should be presented at a pace the patient can follow without overwhelming the patient with details. The discussion is often compared to peeling an onion; provide an initial overview, then answer questions, going into more detail depending upon the patient's tolerance level and request.

When

We have found that patients, for the most part, come into an inpatient acute rehabilitation setting hoping they will “get better.” What this means varies with the patient and his/her family. The appropriate and effective time for the discussion of prognosis in the rehabilitation setting will also vary by the physician, the institution, the patient, and the family. We do not immediately present the person with a neurologically complete injury with the prognosis on admission to rehabilitation. The initiation of this communication is determined by specific factors. These include whether or not the patient and/or family have raised questions to the physician or other staff members regarding prognosis and whether there are major differences between team and patient goals. Prognosis should be discussed before the patient and/or family are invited to a team conference where they may learn in a large group setting the current rehabilitation goals, need for permanent home modification, importance of learning the bowel and bladder program, and usefulness of assistive technology and adaptive recreational programs, as these issues will once again reflect the permanence of their condition. Currently, a study is in progress to ascertain when persons with a neurologically complete injury prefer to discuss their prognosis with the treatment team.

At times, denial of the implications of the injury may prevent patients from asking about their prognosis. Denial, when it is just a verbal disavowal of prognosis (ie, “I will walk out of here”) is less harmful than the patient who acts on his or her erroneous belief. An example of this would be the patient declaring, “I don't have to work on transfers from the wheelchair; I need to focus solely on those skills that will enable me to walk.” Conversely, persons with paraplegia who do not recognize that they will be able to live independently at the wheelchair level also would benefit from an early discussion of prognosis with understanding of their future projected goals.

Additional consideration needs to be taken when family members of an adult patient, most often parents, request that the patient not be told the negative prognosis. Discussions should take place with the family physician, and the psychologist regarding the parents' need to protect their loved one.

When discussing prognosis with patients, the physician may want to explore their hopes with them. If the patient is too overwhelmed with the prognostic information given, set a time to discuss the issue of hope at a later date. At no time should a staff member take away the patient's hope for the future.

THE ROLE OF MEANING AND HOPE

Reestablishing identity and regaining meaning and purpose in one's life are important to consider when working with the patient with a traumatic SCI. Many patients ask: “Why did this happen to me?” Bulman and Wortman discuss 6 reasons offered by persons with SCI, which include (a) God has a reason, (b) chance, (c) predetermination, (d) a personal purpose, (e) probability, and (f) deserving it (29). The role of hope, spirituality, and religion should be taken into consideration in helping each individual cope with his or her injury and in gaining meaning and purpose in life. Higher levels of hope are associated with lower levels of depression and psychosocial improvement after injury (30,31). Hope is what enables a person to move from the present, which may involve multiple losses, to a future that may be better (32).

It is important to relay to patients that there is still hope after SCI. Even with a poor prognosis for neurological recovery in a complete injury, it is rare that there is not something about which to be hopeful.

Hope enables the patient to feel reassured that some parts of the present situation will get better. Hope does not always mean a cure, but to be “as well as possible” (2). Informing patients of their anticipated functional capabilities (ie, driving, working, parenting, sexual functioning, and involvement in recreational activities) may be heartening to most patients. To have hope seems to be beneficial, regardless of whether or not the hope is being fulfilled.

Although statements regarding prognosis should be realistic based upon current medical knowledge, the discussion should maintain hope regarding the current status, quality of life, and community and social reintegration after acute rehabilitation, as well as the future in terms of research. It is not the physician's role to offer false prospects, but it is advisable to mingle information regarding the many positive changes that are occurring in spinal cord research in the discussion. Written material, Web sites, psychological services, and peer support groups should be made available to the patient and family to further their knowledge and the patient's sense of self.

SUMMING UP

Patients receiving bad news will have various emotional reactions, and it is often the unpredictability of their responses that makes this discussion challenging for the physician and staff. Some patients will show signs of verbal and nonverbal distress during and after the discussion. One should acknowledge this distress and invite the patient to describe his/her feelings. Even though the physician cannot change the extent of the injury or the prognosis, it is still important to explore the patient's reactions and concerns since it is likely that the physician can still do something helpful or useful to assist adaptation (33). Helping patients work through their initial reactions allows them to feel supported and can also aid in identifying what additional services (ie, physical, emotional, and educational) they may require. However, if the patient becomes significantly distressed during the conversation, there is no point continuing until he or she is ready to do so. Clinicians sometimes cover up their own discomfort by talking over difficult or emotional interludes (eg, when the patient cannot stop crying) (25). Sitting quietly with the patient for a brief time will enable him or her to regain control and resume conversation.

At the end of the discussion, the physician might suggest that the patient and family speak with other patients and families who have had similar experiences and concerns. They should be cautioned that while injuries may be similar in nature, they are rarely exactly the same and that adjustment capabilities of individuals differ. It is important to follow up with the patient after the conversation. A number of methods can be used effectively for this including having a psychologist or other professional staff member visit with the patient to see how the discussion was received. The physician should also follow up to see whether there are any unresolved issues. Offering reading material on specific topics of interest to the patient can be very helpful. Follow-up with their psychologist and/or a local member of the clergy may also be of assistance.

Lastly, a note documenting that the conversation took place should be placed in the medical record. In the oncology population, patients often do not recall or understand what their physicians had told them (17). Documenting the date and time, the individuals who were present, and key pieces of information discussed may assist all parties at a later date.

CONCLUSION

It is extremely important for physicians caring for patients with SCI to learn the communication skills needed to discuss negative prognostic news. Physicians in general are well trained to diagnose, treat, or cure. The SCI clinician in this case cannot cure the injury and is placed in the position of describing the injury and the long-term impact it may have on the individual. The SCI physician cannot ignore this important aspect of care and should be aware that for the patient, healing may occur without a cure (28). The goal of the discussion regarding prognosis is to begin the process of healing for the patient.

Training SCI specialists to perform this task more effectively will benefit their patients as well as foster their own personal growth and professional development. Strategies for providing education in the delivery of bad news include lectures, small group sessions, and role playing with peers and standardized patients, as well as observing more experienced clinicians perform this task (34–37). A number of Web sites are available for learning additional points on breaking the news to patients (38–40).

This article provides the SCI physician with some thoughts to consider when discussing the prognosis of SCIs with their patients. Physicians should learn the skills to foster hope and enable inpatients who recently suffered an SCI to look beyond the immediate situation and adjust their attitudes and focus their energies on improving their quality of life.