As has been discussed, remarkable strides have been made in the ability to prolong life, but attention to care for the dying lags be-hind (Callahan, 1993b). On one level, this comes as no surprise. Each of us will eventually face death, and most would agree that one’s own demise is a subject he or she would prefer not to con-template. Indeed, Glaser and Strauss (1965) noted that unwill-ingness in our culture to talk about the process of dying is tied to our discomfort with the notion of particular deaths—those of our patients’ and our own—rather than talking about death in the ab-stract, which is more comfortable. Finucane (1999) observed that our struggle to stay alive is a prerequisite to being human. Con-fronting death in our patients uncovers our own deeply rooted fears.
To develop a level of comfort and expertise in communicat-ing with seriously and terminally ill patients and their families, nurses and other clinicians need to first consider their own expe-riences with and values concerning illness and death. Reflection, reading, and talking with family members, friends, and colleagues can assist the nurse to examine beliefs about death and dying. Talking with individuals from differing cultural backgrounds canassist the nurse to view personally held beliefs through a different lens, and can help to sensitize the nurse to death-related beliefs and practices in other cultures. Discussion with nursing and non-nursing colleagues can also be useful to reveal the values shared by many health care professions and identify diversity in the val-ues of patients in their care. Values clarification and personal death awareness exercises can provide a starting point for self-discovery and discussion.
Nurses need to develop skill and comfort in assessing patients’ and families’ responses to serious illness and planning interven-tions that will support their values and choices throughout the continuum of care. Patients and families need ongoing assistance: telling a patient something once is not teaching, and hearing the patient’s words is not the same as active listening. Throughout the course of a serious illness, patients and their families will en-counter complicated treatment decisions, bad news about disease progression, and recurring emotional responses. In addition to the time of initial diagnosis, lack of response to the treatment course, decisions to continue or withdraw particular interven-tions, and decisions about hospice care are examples of critical points on the treatment continuum that demand patience, em-pathy, and honesty from the nurse. Discussing sensitive issues such as serious illness, hopes for survival, and fears associated with death is never easy. However, the art of therapeutic communica-tion can be learned and, like other skills, must be practiced to gain expertise. Similar to other skills, communication should be prac-ticed in a “safe” setting, such as a classroom or clinical skills lab-oratory with other students or clinicians.
Although communication with each patient and family should be tailored to their level of understanding and values concerning disclosure, general guidelines for the nurse include the following (Addington, 1991):
· Deliver and interpret the technical information necessary for making decisions without hiding behind medical termi-nology.
· Realize that the best time for the patient to talk may be when it is least convenient for you.
· Being fully present during any opportunity for communi-cation is often the most helpful form of communication.
· Allow the patient and family to set the agenda regarding the depth of the conversation.
Communicating about a life-threatening diagnosis or about dis-ease progression is best accomplished by the interdisciplinary team in any setting—a physician, nurse, and social worker should be present whenever possible to provide information, facilitate dis-cussion, and address concerns. Most importantly, the presence of the team conveys caring and respect for the patient and family. Creating the right setting is particularly important. If the patient wishes to have family present for the discussion, arrangements should be made to have the discussion at a time that is best for the patient and family. A quiet area with a minimum of disturbances should be used. Each clinician who is present should turn off beep-ers or other communication devices for the duration of the meet-ing and should allow sufficient time for the patient and family to absorb and respond to the news. Finally, the space in which the meeting takes place should be conducive to seating all of the par-ticipants at eye level. It is difficult enough for patients and fami-lies to be the recipients of bad news without having an array of clinicians standing uncomfortably over them at the foot of the pa-tient’s bed.
After an initial discussion of a life-threatening illness or pro-gression of a disease, patients and their families will have many questions and may need to be reminded of factual information. Coping with news about a serious diagnosis or poor prognosis is an ongoing process. The nurse needs to be sensitive to these on-going needs and may need to repeat previously provided infor-mation or simply be present while the patient and family react emotionally. The most important intervention the nurse can pro-vide is listening empathetically. Seriously ill patients and their families need time and support to cope with the changes brought about by serious illness and the prospect of impending death. The nurse who is able to sit comfortably with another’s suffering, time and time again, without judgment and without the need to solve the patient’s and family’s problems provides an intervention that is a gift beyond measure. Keys to effective listening include the following:
· Resist the impulse to fill the “empty space” in communica-tion with talk.
· Allow the patient and family sufficient time to reflect and respond after asking a question.
· Prompt gently: “Do you need more time to think about this?”
· Avoid distractions (noise, interruptions).
· Avoid the impulse to give advice.
· Avoid canned responses: “I know just how you feel.”
· Ask questions.
· Assess understanding—your own and the patient’s—by re-stating, summarizing, and reviewing.
Patients will often direct questions or concerns to nurses before they have been able to fully discuss the details of their diagnosis and prognosis with the physician or the entire health care team. Using open-ended questions allows the nurse to elicit the pa-tient’s and family’s concerns, explore misconceptions and needs for information, and form the basis for collaboration with the physician and other team members. For example, the seriously ill patient may ask the nurse, “Am I dying?” The nurse should avoid making unhelpful responses that dismiss the patient’s real con-cerns or defer the issue to another care provider. Nursing assess-ment and intervention are always possible, even when a need for further discussion with the physician is clearly indicated. When-ever possible, discussions in response to the patient’s concerns should occur when the patient expresses a need, although it may be the least convenient time for the nurse (Addington, 1991). Creating an uninterrupted space of just 5 minutes can do much to identify the source of the concern, allay anxieties, and plan for follow-up. For example, in response to the question, “Am I dying?” the nurse could establish eye contact and follow with a statement acknowledging the patient’s fears (“This must be very difficult for you”) and an open-ended statement or question (“Tell me more about what is on your mind.”). The nurse then needs to listen intently, ask additional questions for clarification, and provide reassurance only when it is realistic. In this example, the nurse might quickly ascertain that the patient’s question em-anates from a need for specific information—about diagnosis and prognosis from the physician, about the physiology of the dying process from the nurse, or perhaps about financial implications for the family from the social worker. The chaplain may also be called upon to talk with the patient about existential concerns.
As a member of the interdisciplinary team caring for the pa-tient at the end of life, the nurse fills an important role in facili-tating the team’s understanding of the patient’s values and preferences, the family dynamics concerning decision making, and the patient’s and family’s response to treatment and chang-ing health status. Many dilemmas in patient care at the end of life are related to poor communication between team members and the patient and family and failure of team members to commu-nicate effectively with each other. Regardless of the care setting, the nurse can ensure a proactive approach to the psychosocial care of the patient and family. Periodic, structured assessments pro-vide an opportunity for all parties to consider their priorities and plan for an uncertain future. The nurse can assist the patient and family to clarify their values and preferences concerning end-of-life care by using a structured approach. Sufficient time must be devoted to each step, so that the patient and family have time to process new information, formulate questions, and consider their options. The nurse may need to plan several meetings to accom-plish the four steps described in Table 17-1.