Skip to main content
Does this conflict with our religious beliefs? We don’t always know how the families of our patients make decisions, but it appears that the patient’s spouse often has the last word. This is often the case when several people are involved, when emotions are high, and when the situation is extremely stressful. The box below lists some of the concerns that I’ve heard expressed by families as they try to make decisions regarding what’s best for their loved ones. We don’t want our loved one kept alive and severely disabled. We’re not certain we know how our loved one will do over time. We don’t know how to make such important decisions. Family members may express an inability to cope with current circumstances. A doctor or other member of the health care team may ask family members what typically brings them strength and comfort, and whether they’re interested in talking with a hospital chaplain. Chaplains provide spiritual care, usually regardless of a family’s beliefs and practices. A chaplain’s straightforward approach to asking simple questions about religion is very important and may be appreciated when family members are struggling. Meetings with family may involve a private conversation with the closest family members or a larger gathering with extended family. Where we talk with families is almost as important as what we discuss and how we express it. 
Best Of Both Worlds
Obviously, we can’t have a serious conversation in a hallway or another busy part of the hospital. We also speak to families personally at the bedside, but if there are a lot of people, we’ll use a large conference room. The first of these personal meetings usually happens when an individual is admitted. The goal is to communicate the person’s condition on arrival, what plans are in place and whether emergency surgery is needed. These meetings are emotionally charged, and family members may not grasp everything they’re being told. I follow up regularly if the patient’s situation is constantly changing or when a new development occurs. In this setting, a physician may involve family members in trying to elicit a response from the patient or demonstrate what a certain response, such as squeezing a hand, means. We can confirm what family has witnessed or explain that some responses are reflexive and not voluntary. We also can point out other complications. When a patient awakes from coma and is attentive, plans for further rehabilitation are discussed with family members at the bedside. Every time they enter a patient’s room, physicians must be prepared to update family members about their loved one’s current condition and may need to answer lingering questions. We try to avoid having a conversation in a patient’s room with people on cellphones asking questions. Its Never Enough
Families also need to understand that physicians in other specialties may come in and out of their loved one’s room, and these experts will not want to answer questions outside their purview. Have all relevant test results available. Identify the person who is most responsible for decisions. Discuss the patient’s current state, management and complications. Discuss whether the patient is aware of his or her condition. Discuss the current care plan. Discuss care options. Discuss the expected timeline for improvement or possible point of no return. Discuss code status and resuscitation efforts. We often start by introducing the participants and explaining the purpose and process of the meeting. Larger conference rooms allow us to include more family members or close friends, and we always invite social workers, clergy, nursing staff and other specialists involved with a patient’s care. These meetings are to provide information about the patient’s current state, the level of care the person is currently receiving, and whether adjustments should be made. Something About You
Every attempt should be made to describe the patient’s clinical condition unambiguously, especially with the closest family members. Information about the individual’s clinical neurologic state should be expressed clearly. It’s important to discuss other issues that may be worrying family, such as the their loved one’s experience of pain, why their loved one appears to be fighting the ventilator, the meaning of facial and limb twitching, and the cause of agitation. It’s also my belief that in more dire situations the phrase withdrawal of care should be avoided. The message should be that everything is being done for their loved one, but the current care plan does not include aggressive care or interruption of the dying process. If your loved one was sitting here, what would he or she think? or What did your loved one value the most, and what would dramatically impact his or her daily joy and satisfaction? During such conversations, families often will grieve and cry, and appropriate silences are often necessary. Sometimes, these larger conversations may lead to a decision to withdraw critical care and move to comfort measures. Some family members are prepared and fully understand what is ahead and what their loved one wants. Many need some time to adjust, particularly if what happened was totally unanticipated. I’ve found that after a family decides to withdraw care, the mood often changes, and family members come to terms rather quickly with their decision. I’ve seen sadness quickly turn to relief. In cases when family relationships have been fractured, mending may begin. In short, as family members ricochet between hope, despair and acceptance, they appreciate knowing their loved one’s physician remains involved on the sidelines and can be called upon when needed. When physicians examine and care for a patient, we’re naturally full of doubt about what we’ve found. We constantly question whether what we did was correct, given what we see on an examination. We’re always asking ourselves whether we could have done something differently. My motto, shared by many of my colleagues, is I doubt it. We need to find facts because facts lead to truth and transparency. At the same time, we can’t and shouldn’t hide anything from family members, even if the news isn’t good. Think other physicians give up too often and too early.