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42 Toolkit
Karl E. Misulis, MD, PhD and E. Lee Murray, MD
CHAPTER CONTENTS
Difficult encounters with patients and patients’ family and loved ones are common, but thankfully are usually resolved amicably. Among the most difficult concern the diagnoses of brain death (BD) or persistent vegetative state (PVS). The clinical aspects of BD and PVS are discussed in Chapter 15. Here, we discuss interpersonal interactions that may arise in the context of these diagnoses.
Difficult encounters have a variety of origins. Among these are:
•Unfamiliarity with concepts of BD, PVS, and end-of-life care
•Absence of advanced directives
•Conflict within the family about representing patient’s wishes
•Guilt on the part of individual(s)
Unfamiliarity with the concepts can be remedied somewhat by education. When appropriate, a realistic assessment of the patient’s status should be presented to the family, and, when appropriate, the relevant concepts of do not resuscitate (DNR) orders, PVS, and BD should be discussed.
Advanced directives are increasingly in use, but many patients still do not have them in place. Most electronic medical record (EMR) systems allow for the easy identification and retrieval of advanced directives; however, families are encouraged to have ready access to the original documents.
Conflict in the family is usually regarding opinions on the aggressiveness of care. Classically, one or more family members express a desire for more aggressive care than the wishes of the rest of the family. One approach we use is to emphasize that the focus is on the wishes of the patient. While there are some data that suggest that proxy decision-makers do not represent the wishes of the patient as well as would be hoped, family should tell us the opinions that they believe the patient would have expressed. Laws in effect at the locale also must be followed because proxy decision-making for patients falls under the legal regulations in effect.
Concern over quality of care can promote more prolonged and more aggressive medical care than might be appropriate. Providers who become aware of quality issues should consider offering a change in provider or facility, depending on the clinical situation.
General principles of communication in this context include:
•Clinicians on the team must communicate with each other: Even if they do not all agree on the assessment and prognosis, they need to be aware of each other’s opinions and the bases of these. Discussion between the clinicians can often resolve much of the difference. The team should try to come to a general consensus on diagnoses, management, prognosis, and issues to be communicated to the patient and family.
•Clinicians on the team must communicate with family and patient: This communication is easiest of there is an open ICU visitation policy so that the clinicians can interact with the family at the bedside. If the patient is able to understand, he or she should be included.
•Be frank about status and prognosis: Explanation complexity is tailored to the audience, but generally consensus opinion with only basic supporting clinical information should be presented.
•Discussions are often easier with small groups at least initially: Emotionally charged information presented to a large group can provoke a different reaction than the same information presented to a small group.
•The dataset presented should be limited: Information overload can result in failure of comprehension and internalization of essential data. This can breed distrust and loss of confidence in the healthcare team.
•The patient should always be the focus: We generally recommend that the patient’s wishes be followed, if known. In the absence of an advance directive, family should be asked what they believe the patient would want done in the particular clinical situation.
BRAIN DEATH
The BD diagnosis was discussed in depth in Chapter 15. This section discusses some common scenarios. Note that our approaches for consideration are by no means the only methods of dealing with these issues.
Family does not accept the concept of brain death: Brain death is a concept with meaning in both the medical and legal arenas. As providers, we are used to this discussion, but this may be an alien concept to some families. Often, conflict can be resolved by education and a compassionate approach. Most hospitals have consultants who advise on end-of-life care, and these should be used if available. Ethics committees can also be of great assistance.
Family wants to wait for others to come before terminating life supports: We generally are fairly liberal about continuing supports if the family member will arrive within 24 hours or so. Prolonged maintenance on supports is not appropriate for most clinical situations. Gentle explanation that the patient has already died can help with this transition.
Family wants to transfer the patient to another facility: Families may request transfer to another facility because of lack of confidence in the present healthcare or desire for another opinion. Most referral facilities will decline to take in transfer a patient meeting BD criteria. If education does not resolve this issue, we will accommodate the family wishes and ask, but we have never had another hospital accept a patient who is BD. We will offer additional opinions from other providers in our hospitals.
PERSISTENT VEGETATIVE STATE
PVS is often more difficult to deal with than BD since there is some brain activity, and some movements can appear to have a cognitive basis. We explain the physiology of PVS and have a frank but diplomatic discussion about prognosis. Families usually need time to internalize and adjust to the new reality of their loved one’s situation. If the family desires or seems to need a second opinion, we offer that.
Disposition of a patient with PVS is usually to a long-term care facility. Families are educated about the roles of acute-care hospitals and the spectrum of long-term care facilities: skilled nursing facilities (SNF), long-term acute care facilities (LTAC), nursing homes, and rehab units. Initially, many families intend on caring for the patient at home, but as they observe the intensity of care required, this often changes.
END-OF-LIFE CARE
End-of-life care includes several facets, some of which include:
