Difficult Communication in Oncology Nursing Objectives • Describe the purpose and process of communication in oncology nursing. • Describe strategies for responding to at least three difficult communication scenarios in oncology nursing. Why Is Communication Important in Cancer Care? • 2001 Institute of Medicine (IOM) Crossing the Quality Chasm report • 2011 Patient-Centered Cancer Treatment Planning: Improving the Quality of Oncology Care: Workshop Summary • 2013 IOM Delivering Affordable Cancer Care in 21st Century Report Nurse Communication and Quality • Nurse-patient communication strongly influences patient satisfaction, outcomes and costs of care. (Press Ganey Associates, 2013) Communication in Palliative Care • National Consensus Project for Quality Palliative Care (2013) emphasizes importance of communication in all aspects of care: o Structure and processes of care o Aspects of care: Physical Psychological and psychiatric Social Spiritual, religious, and existential Cultural o Care of patient at end of life o Ethical and legal aspects of care Communication in Nursing • Multiple components • Communication is the foundation of the nursepatient relationship. o Knowing the patient as person o Assessment of symptoms, understanding of illness, goals, values, beliefs o Patient and Family Education o Offering psycho-social-spiritual support o Assisting with decision making • Advocating for patient. • Collaborating with the interdisciplinary team. (Wittenberg-Lyles, Goldsmith, Ferrell & Ragan, 2013; Dahlin, 2010) Learning Activity What is Communication? • Communication: process of mutual influence that is ongoing and dynamic. • Purpose is to impart: o Information o Affect • All communication occurs in relationship to other person(s). • Communication occurs verbally and non verbally. (Wittenberg-Lyles, Goldsmith, Ferrell & Ragan, 2013; Grover, 2005) Levels of Communication • Task o The content of the message. o Often verbal (includes written). o Examples: assessing, teaching, supporting • Relational o Interpretation of message. o How the message and its delivery influenced /impressed by the other. o Often construed from nonverbal message. (Wittenberg-Lyles, Goldsmith, Ferrell & Ragan, 2013) Nonverbal Communication • Consider role of culture and context. • Body movement, gestures, eye contact, position. • Use of touch. • Space and distance “personal space.” • Appearance: grooming, clothing, accessories. • Tone of voice, volume, pitch, rate of speech, use of pauses and silence. • Time perception. • Attentiveness to verbal and non verbal message. Communication Axioms • One cannot “not communicate.” • Communication occurs on two levels. • Nonverbal communication is most powerful. • Congruence between verbal and non-verbal message enhances credibility. (Wittenberg-Lyles, Goldsmith, Ferrell, & Ragan, 2013; Grover, 2005) Communication Needs: Patient and Family Patients • Need for information • Disclose feelings • Maintain / create o Sense of control o Meaning / hope o Purpose Family / significant other • Information • Permission to speak • To be listened to (Dahlin, 2010) Influenced by context, culture, past experience, and trust Communication Barriers: Nurse • Failure to listen • Failure to address concern of the other • Incongruence • Parroting • Being judgmental • False reassurance • Offering advice • Changing the subject • Defending • Rote responses • Patronizing • Distancing • Role / scope of practice • Lack of time Communication Barriers: Family / Caregivers • Belief that nothing will help • Not wanting to burden / distract the nurse / doctor • Not wanting to be / appear weak • Not a legitimate concern • Not wanting the information • Responding to provider message to not address topic • Denial of seriousness of diagnosis • Culture Therapeutic Communication Techniques • Listening • Silence • Open ended questions • Acknowledgement • Restating • Reflecting • • • • • Clarifying Validating Focusing Summarizing Planning Non-therapeutic Communication Techniques • Not listening • Failure to probe • Closed Ended Questions • Parroting • Being judgmental • Ignoring comments or affect • • • • • • Reassuring Rejecting Defending Patronizing Giving advice Changing topics New Communication Concepts in Nursing Practice • Emotional Intelligence o The ability to correctly identify emotions in others and self, use emotions in reasoning, and understand emotions and manage them. • Motivational Interviewing o Helpful in settings of ambivalence and resistance. o The focus on understanding the patient’s motivation of a behavior/decision and supporting self efficacy. (Codier, Muneno, & Freitas, 2011; Pollak, Childers, & Arnold, 2011) Motivational Interviewing • Basic tenets o Resist the righting reflex o Be curious about the patient’s motivations and experiences. o Listen. o Empower the patient. o Use open ended questions, affirmations, reflections and summary. o Allow patients to talk as much as the clinician. o Use reflective statements. o Provide advice or guidance only after asking permission. (Pollak, Childers, & Arnold, 2011) COMFORT Initiative • Nurse communication curriculum for early palliative care integration in oncology o Based in narrative nursing practice o Patient and family centered o Adaptive communication among health care team including patient and family (Wittenberg-Lyles, Goldsmith, Ferrell, & Ragan, 2013) Axioms of COMFORT (ClinicalCC, 2013) What Makes some Conversations Difficult • Disagreement about “facts” o Uncertainty o Lack of clear information o Inconsistent information o Failure to have a plan • Timing • Our own emotions o Feeling awkward and vulnerable o Lack of preparation o Feelings of guilt or failure o Fear of consequences (Sheldon, Barrett, & Ellington, 2006; Davis, Krisjanson, & Blight, 2003; Stone, Patton, & Heen, 1999) Nurses’ Role in Difficult Conversations • American Nursing Association (ANA) Position Statements o Nursing Care and Do Not Resuscitate and Allow a Natural Death Decisions (2012) o Registered Nurses’ Roles and Responsibilities in Providing Expert Care and Counseling at the End of Life (2010) Common Difficult Nurse:Patient Conversations in Oncology • Information regarding cancer diagnosis and cancer therapies. • Supporting patients who received bad news. • Advance Care Planning and clarifying goals of care. More Common Difficult Nurse: Patient Conversations • Answering difficult questions: o “Will this treatment work?” o “Will this cure me?” o “Am I dying?” • Coping with intense emotions • Offering psychological and spiritual support • Conflict Patient and Family Expectations • You will be honest and truthful. • You will not abandon them. • You will elicit and request their values/goals and will help as much as is possible to achieve these. • You will assist them to explore their realistic options • You will work with the entire interdisciplinary team to assure consistency in plan of care • You will LISTEN! (Dahlin, 2010) Listening and Presence • Listening and being present are key elements to effective communication. • Both require focus and energy. • Listening requires hearing, understanding, analyzing, reflecting and summarizing to affirm that you have heard correctly. • Presence requires being available physically, emotionally and intellectually. Listening Exercise General Approach to Difficult Conversations • Listen • Establish trust • Ask – Tell – Ask • Plan for follow up discussion or action (Baer & Weinstein, 2013; Back, Arnold, Baile, Tulsky, & Fyer-Edwards, 2005) Information Sharing and Breaking Bad News Setting • Nurse – patient communication may be a formal interview but is more often is informal as other care is provided. • When possible, assure: o Time to offer attention to patient and family o Privacy o Invite other members of IDT to participate Assessment of Information Needs • How much information is needed / wanted? • Who or who else should have the information? • Establish what is known or suspected. Sharing Information • Align with patient. • Avoid jargon, abbreviations. • Give information in small amounts with frequent pauses to allow for questions/ clarifications. • If delivering or reaffirming bad news, give a warning. • Allow time for patient and family to process the news/ information. • Elicit and answer additional questions. Acknowledging the Feelings • Information about disease, symptoms and treatment may elicit both positive and negative emotions. o Watch body language, facial expressions o Ask about feelings • Acknowledge and validate feelings. o Numbness, sadness, anxiety, anger, fear are common reactions o Name the obvious Make a Plan • Having a specific plan helps alleviate uncertainty. • Provide any written information that may be needed. • Provide interim contact information. Advanced Care Planning (ACP) Advanced Care Planning (ACP) • ACP discussion benefits for patients with a terminal illness and life expectancy of ≤ 1 year: o Does not shorten survival rather improves survival o Lower rates of ICU admission o Improved quality of life with earlier enrollment and longer stay in Hospice o Lower health care costs in last week of life (IOM, 2011; Chung et al., 2009; Wright et al., 2008; Ganti et al., 2007; Weeks et al., 1998) Advanced Care Planning (ACP) • Discussions with patients to elicit their values, preferences, concerns that form decision making for health care and end of life care. o Process, not an event o Decisions may change over time o Ambiguity and inconsistency common • Increases patient–family satisfaction; decreases family distress; improves patient-family –provider communication. (Waldrop & Meeker, 2012; Dahlin, 2010) What is Important about ACP • Allows the patient to state their wishes. • Empowers patients with some control in disease management and end of life planning. • Promotes trust. • Normalizes the discussion of end of life planning and allows ACP to be seen as ordinary like any other treatment discussion. • Relieves the surrogate decision maker of the burden of making difficult decisions. ACP Discussions in Oncology • Only 30-40 % of oncology patients have had ACP discussion with providers. • Many patients admitted to hospital have never had ACP discussions. (Cohen & Nirenberg, 2011) ACP Documentation • Includes the following: o Living wills o Medical Orders for Life Sustaining Treatment (MOLST) o Orders for Do Not Resuscitate (DNR), Do Not Attempt Resuscitation (DNAR) or No Code for both the hospital and out of hospital settings o Do Not Intubate (DNI) o Health Care Power of Attorney / Surrogate health care decision makers / Proxy Why is ACP so hard? • Sensitive topic o Hard to ask the questions and raise issue • Finding appropriate language • Concern that patient will misinterpret intention of the discussion o New diagnosis o Prognosis • Fear of frightening patients • Time • Timing (Smith et al,, 2010; Temel et al., 2010; Panagopoulou, 2008; Wright et al., 2008; Connor, 2007; Matsuymam, Reddy, & Smith, 2006; ) Challenges for Providers • Little education and training in End of Life Care • Concerns that ACP could lead to futile treatments or encourage use life sustaining therapies whether appropriate or not • Fear of litigation • Lack of time to get to know patients and families • No knowledge about previous discussions of wishes, preferences, and goals of care • Lack of documentation of important conversations • Expectation of outcomes of the conversation Challenges for Patients • Often patient wishes are unknown or not honored. • May feel pressured to receive therapies they don’t want. • Fear of abandonment. • Don’t know they can decline treatment in any setting. • Don’t know about options such as home services. • Have poor insurance coverage for palliative / end of life care. (Cohen & Nirenberg, 2011) Ethical Considerations for ACP • Respect for persons • Advocacy • Veracity • Decision Making o Capacity o Substituted judgment o Best Interest Nursing’s Ethical Obligations for ACP • Code of Ethics • Professional Organizations o American Nurses Association o Hospice and Palliative Care Nursing o Oncology Nursing Society Values • What does the person hold dear in life? • What is their definition of quality of life? • What gives them strength? Beliefs • What is person’s meaning of life? • What is person’s religion? • Is the person spiritual? • What are the person’s thoughts on the afterlife? Preferences for Care • What are goals of care? • Will use of life-sustaining treatments assist in achieving goals? • Where does patient want care if dying? When to Initiate Discussion • Routinely o o o o When you first meet patient Discussion regarding diagnosis and treatment When a poor prognosis is being presented Non-urgent treatment decisions • Urgent o When there are difficult decisions to make o When there is an unexpected change in clinical condition • When the patient asks for it Starting the Conversation • “Have you thought about: o if things don’t go well?” o the extent of treatment you would want?” o who would make decisions for you in the case you could not make them?” o how you would guide them in the decisions?” o what you would want if your disease became more advanced?” Hope for the Best; Plan for the Worst • Hope is a multifaceted construct; no universal definition. • Hope as a belief, desire, expectation, or wish for positive future occurrence or outcome. • Clarifying hopes for outcomes is part of ACP as is reframing hope. o “What are you hoping will happen?” o “If that is not possible, what else would you hope for?” (Cooper, 2006; Back, Arnold & Quill, 2003) Eliciting Goals with Families • “What do you imagine [the patient] would have done or wanted in this situation?” • “Given what’s gone on, what are your hopes for [the patient] the future?” • “Can you please help me to understand what I need to know about [the patient’s] beliefs and practices to take the best care of [the patient]?” (End of Life Nursing Education Consortium, 2013) Achieving Common Understanding • Use summary statements. Consider decisions for “therapeutic trial” or as needing only family assent. • Check for understanding of the decisions made. • Seek consensus on the decision or on the need for more information. (End of Life Nursing Education Consortium, 2013) Responding to Difficult Questions • Common difficult questions are: o “Am I dying?” o “Is the cancer worse?” o “Will you help me die?” • All raise emotional and ethical issues for the nurse. o Best response is often exploration of the question. o Builds nurse-patient relationship through trust and veracity. Responding to Difficult Questions • Acknowledge the question. o “That is not a simple question. I will do my best to answer.” o “That is not a simple question. I am wondering what brought it up now?” • Explore the underlying concern. o Understanding of disease status. o Psychosocial – Spiritual concerns: anxiety, depression, hopelessness, suicidal Ideation. Continuing the Response • Provide information and support. o Do not be afraid to say, “I do not know but I will try to find out.” o Do not make promises that you cannot keep. o Involve the interdisciplinary team. Responding to Strong Emotions • Name the emotion • Explore the emotion • Validate the emotional response • Offer support Conflict Negotiation • Goal: Arrive at shared perspective or goal. • In patient care, the wishes and best interests of the patient take precedent. • A “learning stance” may be helpful o “Help me understand your position, concerns, emotions, motivations.” o Clarification often eases the conflict. Steps in Conflict Negotiation • Identify the conflict • Weigh the benefit / burden in addressing it o What is at stake? • Address the conflict • Identify goal of resolving the conflict o Focus on facts not emotions • Explore the conflict o Learning stance with each party stating their perspective and understanding • Problem Solve (Kendall & Arnold, 2009) Summary • Communication is fundamental to nursing practice. o Establishing and continuing the nurse-patient relationship o Patient and Family Education o Assessment o Collaboration • Effective communication requires listening and presence. • Use techniques to assist in difficult conversations. References • Full list of references included with your handouts Special Thanks: Authors Connie Dahlin APRN-BC, ACHPN, FAAN, FPCN Palliative Care Nurse Practitioner – North Shore Medical Center Boston, MA and Maureen Lynch APN-BC, AOCN®, ACHPN, FPCN Nurse Practitioner – Dana Farber Cancer Center Boston, MA Special Thanks: Expert Reviewer Debra Heidrich MSN, RN, ACHPN, AOCN® Nurse Consultant West Chester, OH