html xmlns=”http://www.w3.org/1999/xhtml”>
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:
•Determination of intensity of ongoing and emergent medical care
•Determination of post-acute care disposition
•Decisions about feeding and hydration
Intensity of care: Discussions usually begin with an explanation of current medical status and prognosis. Then we transition to discussing resuscitation status. There is a spectrum of resuscitation options; those usually used at our large referral hospital are:
Then there are various combinations that are occasionally requested by families (including use of antibiotics versus pressors), but generally patients will usually be either full resuscitation or DNR or comfort measures only.
Palliative care and hospice care are services that most larger hospitals offer. Palliative care offers symptomatic and comfort care but allows treatment to continue. Hospice is for patients who are terminal and are not continuing to receive disease-modifying therapy.
Donor services are also offered in many larger hospitals. These individuals often are the first to approach families about organ donation, and they do it well. Some physicians feel obligated to discuss these issues themselves, and that is fine, but we recommend using our skilled and experienced colleagues in these arenas.
Most patients at suspected end-of-life are considered for hospice. Prior to that, palliative care is usually offered. Disposition can be to home with home healthcare, an established hospice unit, nursing home, or skilled nursing facility.
Feeding and hydration: These are issues with an emotional charge for many families. Decisions on intravenous and tube feedings for a patient with a terminal disorder necessitates a frank discussion, and our colleagues in palliative care, hospice, and ethics committees can be of benefit. It may be helpful to explain that, in many patients, these treatments do no more than prolong the dying process.
LACK OF GOOD WORKING RELATIONSHIP WITH FAMILY
Lack of a good working relationship may range from disagreements about services to be provided to frank anger. Providers will try to improve the relationship by discussion and education, but often at least some of the family will not accept the providers’ opinions and not value the providers’ care. The distrust or animosity may not be verbalized, so if the provider detects a trust issue or learns of it from other staff, a change in provider should be requested, whether as attending or consultant.
Methods for establishing credibility with the families should include:
•Clearly and concisely explaining diagnosis(es), condition, management recommendations, and prognosis
•Answering questions and soliciting questions if none is spontaneously forthcoming
•Inviting family to be in the ICU at the time of rounding, if they are not already there
Additional methods for enhancing credibility can be:
•Showing images of scans and electroencephalograms (EEGs) can be very powerful, especially if they are demonstrably abnormal.
•Offer to discuss the situation with the patient’s personal physician—this can be of tremendous benefit and can make the newly met specialist part of the family’s medical team.
MISTAKES
Medicine is an imperfect science, and, as providers, we are imperfect beings. Mistakes will be made by providers, our associates, ancillary staff, and by the system. While we try to establish mechanisms to minimize mistakes, they are not completely avoidable. Mechanisms to minimize mistakes include:
•Work within our comfort zone: Ensure that the conditions being treated are within our expertise and the capabilities of our facility.
•Control volume: Mistakes are more likely when we are hurried or fatigued. Except in disaster conditions, we should be able to limit our workload.
•Control hours: Long call epochs are disappearing, especially in neurology where the numbers of emergencies has skyrocketed because of the focus on emergent stroke care. Solutions can be recruiting additional permanent or temporary providers, defined shifts, and telemedicine.
When a mistake is identified, severity and impact should be assessed. Discussion with the patient, if possible, and the family should include a truthful discussion of the event, cause, impact, and remedy. Discussion of remedy should first focus on the remedy for this particular patient. In addition, it might be appropriate to include in the discussion what we have learned from this event and how this will change our practice.
When there is a mistake or otherwise a case seems to have potential for litigation, we recommend notification of your hospital’s Risk Management department for their review. This accomplishes the following:
•Gather information that can help with defense if a claim is ultimately filed.
•Identify opportunities for improvement that would make similar events less likely.
•Psychologically, for the provider, it is helpful to engage the team that will support our efforts to deliver the best care we can.
