Patients and their families frequently turn to nurses for advice and counsel when faced with decisions about treatment options in the setting of a life-limiting illness. These decisions have become increasingly complex in an age of advanced technology where possibilities of extending life and postponing death seem endless. Conversations focused on the patient’s expressed goals and values can help to guide these decisions. Although nurses are ideally suited to facilitate goals-of-care discussions with patients and their families, unless they feel comfortable engaging in these conversations, a window of opportunity may be lost. A nurse skilled with these discussions listens attentively to the patients’ and families’ worries, fears, hopes, and dreams and places the treatment options within that framework, providing information and counsel that enables the patient to begin to make informed choices. This process is enhanced by the special relationship a nurse has with his/her patient, especially when he/she is faced with a life-limiting illness. Training helps, and these communication skills can be taught.
LITERATURE SUPPORT FOR DISCUSSIONS
Patients who have conversations about their wishes for end-of-life care are more likely to receive care consistent with their preferences.1,2 Initiating end-of-life discussions earlier and more systematically can allow patients to make more informed choices, achieve better palliation of symptoms, and have more opportunity to work on issues of life closure.3 End-of-life discussions are associated with fewer occurrences of resuscitation, ventilation, death in the intensive care unit; earlier referral to palliative care and hospice services; and better quality of life.4,5 Additional burden is placed on patients and families when referral to palliative care is late in the disease course.5 Aggressive care is associated with worse quality of life and quality of care for patients and worse quality of life and bereavement adjustment for caregivers.4 In addition, clarification of the patient’s goals of care may help achieve a “good death” as described by Kehl.6 In a qualitative study, Kehl6 identified patients’ descriptions of a “good death” as being in control, being comfortable, having a sense of closure, having trust in care providers, recognizing the impending death, and leaving a legacy. It is clear that end-of-life discussions are of critical importance to patients with life-limiting disease who wish to be involved in making decisions regarding their medical care at the end of life.7
GOVERNMENT SUPPORT FOR DISCUSSIONS
The importance of goals-of-care discussions has also been recognized through state and federal initiatives. For example, California’s Right to Know End-of-life Options Act became effective in 2009.8 This act requires physicians or nurse practitioners to provide terminally ill patients with a full disclosure of and counseling about hospice care and prognosis. It also provides patients with the right to refuse or withdraw treatment, continue treatment with or without palliative care, receive comprehensive symptom management, and to have an advanced healthcare directive and healthcare decision maker. If a healthcare provider does not feel prepared to have this conversation or is not willing to provide this information, the provider is legally responsible to refer the patient to a provider who will. Similarly, in February 2011, the Palliative Care Information Act became effective in the state of New York.9 This act requires physicians or nurse practitioners to offer patients with a life expectancy of 6 months or less information and counseling about palliative care and end-of-life options. The purpose of this act is to ensure that patients are informed of the available options at end of life and are empowered to make choices about care that reflect their goals, values, and beliefs.
However, these initiatives remain controversial on a national level. A contentious public debate occurred prior to the Patient Protection and Affordable Care Act becoming federal law in March 2010.10 A provision within the law would have required Medicare to reimburse healthcare providers for discussions focused on a patient’s prognosis and end-of-life options. Because this provision raised such a heated political debate, it was removed from the act prior to passage.11 Opponents claimed that passage would provide for the establishment of “death panels,” commissions of officials who would make decisions that rationed healthcare and limited treatment. This was not the intent of the act, but perhaps illustrates the fear that others will dictate the manner and timing of one’s death.
NURSING ORGANIZATIONS’ SUPPORT FOR DISCUSSIONS
Professional nursing organizations have promoted the nurse’s participation in goals-of-care discussions through various initiatives. The American Nurses Association mandates that nurses have a responsibility in the care of the dying to educate patients and families about end-of-life issues, encourage the discussions of life preferences, communicate relevant information for the decisions made, and advocate for the patient.12 The American Association of Colleges of Nursing has recognized the importance of end-of-life communication through the establishment of competencies for end-of-life care that require nurses to communicate effectively and compassionately with patients, families, and other healthcare team members about end-of-life issues.13 The National Consensus Project for Quality Palliative Care, a consortium of leaders from five major professional palliative care organizations, emphasizes the importance of communication in relation to goals of care in the Clinical Practice Guidelines for Quality Palliative Care, with the statement:
Effective communication skills are requisite in palliative care. These include developmentally appropriate and effective sharing of information, active listening, determination of goals and preferences, assistance with medical decision-making, and effective communication with all individuals involved in the care of patients and their families.14 (p10)
NURSES’ SPECIAL RELATIONSHIP WITH PATIENTS
For those with a life-limiting illness, nurses are the “constant” in their journey through a frequently fragmented healthcare system. The nurse becomes familiar with the patient’s medical history, health status changes, “behind the scenes” discussions of the team, family dynamics, and expressions of thoughts, concerns, and values. Thoughtful communication is essential throughout the trajectory. As the nurse builds a relationship based on trust and consistency, he/she may be viewed as “more approachable” than others in the healthcare team and, as a consequence, be part of informal discussions with patients and families. Therefore, the nurse is well positioned to facilitate discussions focused on goals of care and treatment choices in the setting of a progressive debilitating illness.
An important aspect of the nurse’s responsibility is to recognize the need to communicate with both the patient and the family, treating them as a unit of care. For those patients without advance directives who have lost capacity to make decisions, their appointed healthcare agent or surrogate will be the central spokesperson. This spokesperson may feel overwhelmed with the responsibility of decision making and may opt for aggressive treatment despite limited benefit. Skilled and compassionate communication by the nurse can help place the patient back at the center of the decision. The spokesperson will then be better prepared to make decisions based on questions such as: What are the patient’s values and goals? What would the patient want if they could speak for themselves? What is possible? How has the patient lived their life? And what constitutes good medical care for the patient?
BARRIERS TO NURSE FACILITATION OF DISCUSSIONS
Whether goals-of-care discussions at end of life are to be with the patient or his/her surrogate, nurses may hesitate to initiate such conversations for a variety of reasons. These same barriers may exist among other team members and include lack of experience, fear of saying the wrong thing, fear of emotions (their own or the patient’s or the family’s), feelings of guilt because they are not able to do more, disagreement with the patient and the family’s decisions for goals of care, and moral distress.15 Other obstacles include perceptions that the patient and family members are unwilling to confront a terminal prognosis or hospice care, the patient’s inability to communicate, perception of physician reticence, personal discomfort with these conversations, and the desire to maintain hope of patients and family members.16 These barriers combined with lack of education or training and lack of personal and professional experience with death and dying can leave nurses and other members of the team ill-prepared to participate in end-of-life discussions.17
THE ART OF COMMUNICATION
Communication, a fundamental aspect of nursing, is a complex, continual transactional process that occurs between persons by which information, feelings, and meaning are conveyed through verbal and nonverbal messages.18 This process is a core element of palliative care. The art of the discussion is enhanced through formation of a caring and respectful relationship with the patient, in which his/her “voice” is preserved through listening and responding to their narrative. The purpose must always be to support the patient’s values, preferences, and beliefs, while ensuring he/she has the necessary information to make decisions about his/her care that reflect those values. The essential skills involved with therapeutic communication include effective listening, appropriate nonverbal communication, counseling skills, reflection, clarification, empathy, and supportiveness.19 For some nurses, these skills come naturally; for others, they need to be learned and modeled.
Dahlin20 describes three levels of communication that nurses have the opportunity in which to engage with patients. First, day-to-day interactions surrounding the tasks in caring for the patient include small talk, discussion of basic treatment issues, activities of daily living, or personal care. Second, the assessment of treatments encompasses the nurse allowing the patient to honestly evaluate the effectiveness of treatments in an effort to learn about the patient’s distress or pain. The third level of communication is the existential, which occurs at the patient’s deepest sense of self. This sensitive and nuanced level of communication encompasses the existential aspects of end of life, including disclosure, searching for meaning, and suffering. Developing skill at all levels of communication can help the nurse to facilitate goals-of-care discussions. With training and practice, a nurse with sharpened communication skills will be able to discern the patient’s values, beliefs, and concerns, obtaining the information needed to promote the patient’s evolving goals of care throughout his/her disease trajectory.
Words have meaning and nuances that sometimes reflect a person’s culture or past experiences. Awareness of the nuances of language helps lay the foundation for better communication between nurses and their patients. The words used when discussing goals of care may have connotations that evoke fear, confusion, and distrust. For example, hearing the word “hospice” for the first time may evoke feelings of abandonment, loss of hope, and “giving up.” The message intended and the message received may differ significantly. For this reason, it is important to obtain feedback from the patient as to what they “heard” and what those words implied to them. Because the nurse usually works as a core member of the team, clear communication within the team is essential. If mixed messages are conveyed by different members of the team to the patient or family, uncertainty and distress may result. Language that reflects sensitivity when engaging patients and families in these discussions is outlined in the Table.
TRANSITIONS: OPPORTUNITIES TO REVISIT GOALS OF CARE
Transition points throughout the course of a progressive illness provide opportunities to revisit the patient’s illness trajectory, prognosis, goals of care, and treatment options. The nurse is often well placed to alert the team to such opportunities. Major transition points include the time of initial diagnosis, disease progression, functional decline, and when disease-focused treatments are likely to cause greater harm than benefit. These transition periods can be times of psychological and existential crisis for the patient.21 Grounding the patient and family through providing them with a structured pathway or “next step” can be enormously reassuring.
Six commonly articulated goals of care expressed by patients at end of life were identified following a literature review by Kaldjian et al.22 They are to (1) be cured, (2) live longer, (3) improve or maintain function/quality of life/independence, (4) be comfortable, (5) achieve life goals, and (6) provide support for family/caregiver. Identifying the goals of a particular patient and helping them to reach those goals may include their need to reframe or modify the goal as life draws to an end. This is an extremely important nursing role. The ability to sit with the patient and hear his/her grief as losses accumulate, goals are modified, and hope redefined is integral to communication in nursing care at the end of life.
COMMUNICATION STRATEGIES: A “TOOL BOX” FOR NURSES
Nurses can use several communication strategies with patients and families when discussing goals of care. These strategies provide a “tool box” to draw from as needed in each discussion. Developing skill with using these approaches requires instruction, practice, and feedback. Watching someone skilled in communication and being mentored are also helpful. A brief overview of five strategies follows.
The ask-tell-ask23 strategy ensures that the interaction remains a conversation and that the information given is appropriate for the patient. This “tool” can help to assess how much the patient and family know, how much the patient and family want to know, and how much the patient and family wish to discuss it. Using this approach, the nurse should ask open-ended questions to determine the needs of the patient. After the patient responds to each question, the nurse can address their response by telling information that answers the question and addresses the need communicated by the patient. Following the exchange, the nurse can ask another question that can clarify the patient’s understanding of the response or identify additional concerns of the patient. The following example illustrates the use of the ask-tell-ask strategy:
Using the acronym SOLER,24 the nurse is able to utilize nonverbal expressions of empathy during discussions focused on goals of care. Facing the patient squarely (S) demonstrates interest in their story. Nurses can sit at eye level and at a comfortable distance close to the patient. An open (O) body posture can communicate openness to the patient. For example, the nurse should avoid having their arms folded during discussion. When the nurse leans (L) toward the patient, he/she shows intimacy and flexibility. In Western cultures, using eye contact (E) demonstrates that the nurse is paying attention and is focused on the patient. Lastly, the nurse should maintain a relaxed (R) posture to help decrease the patient’s anxiety.
The NURSE25 acronym assists the nurse to utilize verbal expressions of empathy. Naming (N) the emotion assures the patient of the nurse’s recognition of his/her emotion. Expressions such as “You seem really upset since the doctor talked with you this morning” and “Are you sad?” are examples of naming the emotion. When the nurse uses words that communicate understanding (U), the patient’s emotion is normalized, and a nonjudgmental attitude is demonstrated. The expression “I can’t imagine how you have been feeling, but it wouldn’t surprise me if you were feeling sad right now” helps the patient to know the nurse understands he/she is having a difficult time. Communicating respect (R) acknowledges the patient’s ability to overcome some of the challenges of his/her life-limiting illness. Encouraging words such as “I am so impressed that you have been able to continue working while attending all of your appointments” recognizes the challenges that the patient is encountering and coping with. When a nurse uses words to communicate support (S), they communicate their presence at that time and in the future, assuring the patient of nonabandonment. Assuring the patient with the words, “I know that you have been struggling with the pain. I will continue to work with you to control this problem and to help you reach your goals,” clearly states the nurse’s commitment to supporting the patient throughout his/her disease trajectory. Finally, the nurse can communicate empathy through words that explore (E) his/her experience. Demonstrating an interest in their narrative and the “story” of their experience allows patients to know the nurse is interested and to personalize their experience. Words such as “You said you were worried about your family through all of this, can you tell me more about that?” acknowledges the patients’ concerns and provides opportunity for them to clarify their experience.
“Hope for the best, prepare for the worst”26 is used to discuss the possibility of less desirable outcomes with patients who are holding on to unrealistic hopes, while allowing for practical planning without seeming to remove hope for a good outcome. Importantly, this strategy allows patients to face frightening outcomes.27 The following is an example of the “hope for the best, prepare for the worst” strategy:
The SPIKES protocol28 suggests six steps for delivering bad news and can be a helpful guide when nurses prepare the patient for and participate in a family meeting. Family meetings are often the preferred format in which discussions about goals of care take place at times of transitions. The SPIKES protocol encompasses many aspects of the previously described communication strategies and includes setting up (S) the discussion; assessing the patient’s perception (P) of the situation; obtaining the patient’s invitation (I) for information about his/her diagnosis, prognosis, details about their illness, or treatment options; giving knowledge (K) to the patient; addressing the patient’s emotions (E) with empathic responses; and summary (S) to provide the opportunity for the patient and family to summarize their understanding of the discussion, decisions made, feelings about the meeting, and any questions or concerns. The nurse is often the person who “debriefs” the patient and/or family after the meeting and reinforces and makes concrete the “next steps” in the plan.
Mr T. is a 70-year-old man who presented to his primary physician with 3 weeks of progressive upper abdominal pain and new onset of jaundice. After an abdominal computed tomographic scan and an exploratory laparoscopy revealed the diagnosis of unresectable pancreatic cancer, a biliary stent was placed, and he was referred to a medical oncologist for further management. At his first appointment, Mr T. met with the nurse practitioner, Margaret, who skillfully began the appointment eliciting information that would eventually establish the goals of care and direct the team’s plan of care for Mr T. After introducing herself, she began the interview:
Through their discussion, the nurse practitioner began to discover the “story” of Mr T.’s life, which provided insights into his beliefs, values, hopes, and feelings. He is a retired salesman, lives with his wife, has four grown children who live nearby, and several grandchildren. He enjoys spending time with his family, traveling, golfing, walking, and working in his yard. Before his pancreatic cancer diagnosis, he had been relatively healthy with a medical history that included hypertension, arthritis, and glaucoma. His current symptoms include abdominal pain, loss of appetite (20-lb weight loss in the past 3 months), increased fatigue, and anxiety. He is fearful of the symptoms and treatments for his disease and mentions one of his goals would be to avoid becoming too thin and “looking like a cancer patient.” Other goals elicited during the meeting included the desire to live as long as possible, to be comfortable, to revise his will and to complete advance directives, and to attend a vacation at the beach with his daughter’s family, scheduled for the following week.
With an understanding of the patient’s goals of care, the nurse practitioner collaborated with the oncologist to establish the initial plan of care. The plan of care included chemotherapy treatment to begin 2 days after the patient returned from his family vacation; workup and management of the patient’s symptoms; a palliative care consult to manage Mr T.’s symptoms and to address the physical, psychological, social, and spiritual issues involved with the patient’s quality of life; a dietician consult to assist Mr T. to maintain his weight; and providing contact numbers for the nurse practitioner and the oncologist. The follow-up appointments were made, and written reminders were given to the patient.
The next transition occurred 2 months later while Mr T. was receiving his chemotherapy in the outpatient chemotherapy infusion unit. After discovering Mr T.’s feelings of anxiety and the value he placed on efficiency and privacy, his primary nurse, Joan, made special provisions for his weekly chemotherapy visits. A private room for his weekly infusions was arranged, and she ensured that he had a limited number of infusion nurses rotating his care. Because she had established a trusting relationship based on expert clinical skills, communication of respect, and consistent honoring of Mr T.’s values, Joan was able to facilitate a discussion about goals of care:
Following this discussion with Mr T., Joan was able to identify his changing goals of care, which included planning for the possibility of treatment failure. Issues related to end of life were now able to be discussed because the conversation had been opened to the “elephant in the room.” Mr T. did not want to articulate these worries to his wife and children because he was not ready to “give up,” and he knew that the discussion might contribute to their grief. Because Joan was a trusted professional who communicated empathy and understanding of his prognosis, Mr T. was able to confide both his hopes and fears. Joan was able to continue the goals-of-care discussion based on an increasing understanding of Mr T.’s beliefs, values, and feelings. Through this understanding, she was able to promote a plan of care that was individualized and included outreach to his family and a family meeting. She followed up with communicating the essence of the conversation to the patient’s primary team through a phone call to Margaret, the nurse practitioner. In this way, the continuity of the goals-of-care discussion was maintained.
When Mr T. was directly admitted to the inpatient unit 3 months later with complaints of severe abdominal pain, he appeared cachectic, weak, jaundiced, and uncomfortable. A morphine drip was started, and a workup for the cause of the pain began. As the resident was writing orders for the abdominal computed tomographic scan, Mr T.’s nurse, Tracy, was at his bedside managing his intravenous lines and administering his medications. She observed Mr T. suppressing tears and closed the door for privacy and then pulled a chair to the side of his bed. Although she had never met Mr T. before, her sensitive response earned Mr T.’s cautious trust. Rather than avoiding the suffering of her patient, Tracy chose to assert her role as his advocate and to utilize the tools she had to communicate empathy. The discussion proceeded:
Mr T. is familiar with the concept of hospice care because after several appointments with the palliative care team, he is familiar with the model of care providing support in the home for patients with a life expectancy of less than 6 months. Tracy followed up by communicating the discussion to the healthcare team on the unit. Subsequently, the team communicated directly with the palliative care team Mr T. had been working with and the nurse practitioner, Margaret, who collaborated with the oncologist. The team agreed that the patient’s cancer had progressed, and he was no longer benefiting from the treatment. A family meeting was arranged to discuss the patient’s prognosis and the discharge plan. Because the nurse was able to facilitate the goals-of-care discussion early in his hospitalization, his plan of care was adapted to reflect his values, beliefs, and priorities. He was discharged to home within 24 hours with hospice support. Mr T.’s disease trajectory from time of diagnosis until time of death was 7 months.
Throughout his illness, he was provided opportunities to achieve a “good death,” as described by Kehl,6 through the efforts of nurses in various settings to explore his goals of care during times of transition. Through these discussions, he maintained control of his plan of care. He was able to confront the reality of his situation as he established advance directives and finalized his will early in his disease trajectory, leaving a legacy for his family. His comfort was maintained through a comprehensive plan to manage his symptoms with the palliative care and hospice team support. Through discussions focused on the goals of care, he was able to achieve a sense of closure as he began hospice care and his final journey. The trust he had for his nurses continued as the hospice nurse exhibited expert skills in supporting him and his family in the final days of his life, helping them to recognize the signs and symptoms of his impending death.
Communication is central to nursing care especially in the setting of a progressive disease, which will end in the patient’s death. This article has outlined a variety of communication strategies designed to provide tools for nurses and other clinicians as they discuss transitions in treatment options and goals of care, especially when treatment focus shifts from cure to comfort and quality of remaining life. The function of communication is to reduce uncertainty and to provide a basis for action. Information conveyed wisely and with sensitivity can improve the patient’s and his/her families’ ability to act now and in the future and strengthens the patient-nurse relationship. Clumsy communication can cause harm, “paralyze” action, and destroy the relationship. Continued efforts to equip nurses with the skills necessary for these discussions may provide valuable support for patients to achieve their goals at end of life.
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Keywords:© 2012 The Hospice and Palliative Nurses Association
communication; discussions; end-of-life; goals of care; life-limiting disease