Every day, an oncology nurse has a conversation with a patient that goes something like this: The patient asks, How much longer do you think I can live with this aggressive tumor?
Every day, an oncology nurse has a conversation with a patient that goes something like this: The patient asks, “How much longer do you think I can live with this aggressive tumor?” The oncology nurse, knowing that this patient’s disease is life-threatening and no further medical treatments can be offered, feels very uncomfortable about prognosticating and does not want to deplete any hope that this patient might have. Deciding to be honest with the patient, the nurse responds with, “I don’t really know.” Oncology nurses want to be honest with their patients. They know that it is important to build trust with patients and their families, yet chances are that neither the nurse nor the patient is going to be satisfied with that answer. Communicating well is important in any clinical situation, but especially in palliative care, with which terminal illness is a family experience and imparting information is crucial to allowing patients and their families to make informed decisions.
Be a good listener
Caring for dying patients and their families is contingent on adequate preparation of healthcare providers, particularly in the area of communication. As the predominant professional in end-of-life (EOL) care, nurses must be competent in providing physical and psychosocial care to patients and families facing a terminal illness, which must begin with excellent communication skills. Research has demonstrated that nursing education has not prepared nurses to provide optimum palliative care, but how do nurses who come across the previously asked question every day deal with patients and their families who want to talk about their anticipatory grief and need to know that it is okay to say, “I am scared?”
Communication is not just a verbal exercise; in fact, 80% is nonverbal, as evidenced in body language, eye contact, gestures, and tone of voice. Many times, we communicate with patients and their families by listening and bearing witness to what they are saying. Attentive listening requires that we do not change the subject, we take our time in giving advice, and we encourage patients and their families to reminisce and create legacies. Presence requires that we acknowledge our own vulnerability; we are intuitive, empathetic, serene, silent, and willing to “be in the moment.” It is vital that patients and their families have the opportunity to talk about their feelings, fears, and hopes. It is important that as oncology nurses we stress to our patients that their stories are important to tell and that we’re there to listen.
Maintaining open lines of communication
Once a conversation is established, it is generally easy to maintain, but how does someone start a conversation with a patient who is dying and his or her family? Set the right atmosphere, relay that you want to spend time with them, sit down so that you are “eyeto- eye” with them, lean forward as they are talking, provide uninterrupted eye contact if culturally relevant, be sure to silence pagers and/or cell phones, and identify whether this is an appropriate time to talk with the patient and their family. It is likely that someone else from the interdisciplinary team may have come by earlier and answered all of their questions, but the family may be overwhelmed with the amount of information shared, and/or the patient may be experiencing pain and other symptoms that would make it difficult for them to engage in conversation. Finally, be sure to use open-ended questions. For example, if you ask, “are you feeling OK today?” the patient can answer either “yes” or “no,” and then the conversation is over. However, asking “how are things going for you today?” encourages the patient to elaborate beyond a “yes” or “no.”
When talking to a patient who is terminally ill, excellent communication skills assist in facilitating end-of-life decision making. We live in a death-denying society in which people are uncomfortable using words such as “dying” and “death.” It is important to use those words so that there are no misunderstandings. Many times, clinicians feel uncomfortable saying “death” or “dying” because they fear that doing so will strip away any hope the patient and his or her family may have. But being honest can help patients look for hope, such as through receiving excellent pain and symptom management, and provides the opportunity to talk about “a good death” and what that means for patients and their families. For example, a patient may need to resolve some family issues by saying “I love you” or “I forgive you.” Honesty allows patients to prepare for death and to put their lives in order. Many patients have considered this time precious, as they have opportunities to reconcile and reminisce. Excellent communication also allows oncology health professionals an opportunity to clarify benefits and burdens of various treatment options. This is important so that patients and their families have a sense of autonomy and control over the decisions they make regarding goals of care.
Managing team conflict
From time to time, members of the interdisciplinary team may experience conflict. Many times, conflict brings out discussions that might not have otherwise been planned, whereas other times, conflict can cause such dissension among the other team members that patient care is compromised. What needs to be done if you are experiencing interdisciplinary team conflict? First, take a step back. Is the conflict about “you?” Is the conflict about you getting your way? Second, try to define the area of conflict that is unresolved. Perhaps the team disagrees about the do-not-resuscitate (DNR) status or whether tube feeding should be initiated. When a disagreement cannot be resolved, try to obtain agreement on areas that you can. Find a mentor or a colleague to talk to about the conflict. It is important to keep the patient’s and his or her family’s best wishes and goals of care in mind. When nurses and physicians do not communicate well, it is the patient who suffers. Research has shown that negative or disruptive physician— nurse relationships are characterized by negative patient outcomes.
Be an advocate
Oncology nurses have the privilege to be a part of and listen to wonderful conversations with patients and their families, whether it is the day of their cancer diagnosis or the day of their death. Many of these conversations tend to happen at 2:00AM when the patient is frightened and unable to sleep, or right after receiving “bad news.” Oncology nurses have a unique opportunity to advocate for what they believe is in the patient’s best interest, yet true advocacy is achieved when the patient and family have a primary role in the plan of care. The oncology nurse’s role is to promote clear and open communication among team members and the patient and family. It is an honor to be present with oncology patients and their families during their final days. Assisting in the orchestration of excellent palliative care can reduce the patient’s pain and can provide an opportunity for the family to talk about their anticipatory grief and sense of loss. When the patient dies, the family will always remember those last days and moments they had with their loved one. As oncology nurses, we get one chance to assist in keeping our patients comfortable so that they can enjoy the remaining time with their families. It is such a privilege to be invited to walk this path with our patients—whether they survive or succumb to the cancer. Through excellent communication, nurses can assist patients and their families to define the goals of care, respect those goals, and carry out the best oncology nursing care.
Pam Malloy has been an oncology nurse for 30 years and has worked on several chemotherapy projects with ONS. She is the Director of the ELNEC Project at the American Association of Colleges of Nursing, Washington, DC.
NOTE: Material for this article was taken from the End-of-Life Nursing Education Consortium (ELNEC) train-the-trainer national program, administered by City of Hope National Medical Center (COH) and the American Association of Colleges of Nursing (AACN) and designed to enhance palliative care in nursing. ELNEC was originally funded by a grant from the Robert Wood Johnson Foundation with additional support from the National Cancer and Open Society Institutes: Aetna, Archstone, Oncology Nursing, and California HealthCare Foundations. Materials are copyrighted by COH and AACN and are used with permission. For more information about providing excellent palliative care to oncology patients, no matter where they are on the illness trajectory, visit www.aacn.nche.edu/ELNEC.