Delivering Serious News

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1 Delivering Serious News

2 Definitions of Serious News Includes communication regarding Life-threatening illness Imminence of death Death of a loved one Definition of serious news Any information likely to alter drastically a patient s view of his or her future (Buckman, 1984) Bor et al (1993): feeling of no hope a threat to a person s mental or physical well-being, a risk of upsetting an established lifestyle fewer choices in his or her life

3 Types of discussion Illness/Treatment stage Diagnosis: early vs advanced disease Progression Recurrence No further active treatment Terminal care Factors to consider: Your relationship with the patient: new versus existing Age of the patient: older versus younger Identification within your personal life Past experiences & attitudes to delivering bad news

4 Exercise Personal Reflection: - Rate your average level of discomfort between 0-10 when delivering serious news - Name 3 thoughts or feelings in relation to the idea of delivering serious news - Think about a situation that didn t go well and why? - Think about a situation that did go well and why?

5 Impact on Clinicians Findings from clinician surveys (Ptacek et al, 2001, Shaw et al, 2013) Stressful Difficulties with handling own emotions: Guilt Sorrow Identification Feeling like a failure Stress can last hours, days Little evidence that these difficulties ease with experience Can contribute to burnout

6 Doctor s Discomfort when Delivering Bad News Where does it come from? Feeling responsible for patient s misfortune Perceptions of failure Unresolved feelings about death and dying Concerns about patient s response to the news Clinician s concerns about their own emotional response to the circumstance

7 Impact of Delivery on Patients How bad news is delivered can have a significant impact on: Patient s understanding of their illness Treatment decisions Patient s long-term relationship with clinicians (Rosenbaum et al., 2004) Patient s satisfaction with care Hope and subsequent psychological adjustment

8 Impact of Delivery on Patients Patients are quite critical of how clinicians deliver serious news German study: (Seifart et al, 2014) Only 46% of patients were satisfied with their clinician s communication Inadequate in the areas of: Addressing emotions Providing clear explanation of diagnosis Explaining the course of the disease

9 But what do patients want? Individual differences & preferences in WHAT they want to know 95% of patients want to be informed of their diagnosis (Cox et al, 2006) But large variation in specific details (Cox et al., 2006; Rutten et al., 2005; Fujimori et al., 2009) Chances of cure Effectiveness of cancer treatments Specific prognosis Cross-cultural differences

10 How do we know what patients want? Difficult to predict individual preferences therefore best to ask how much and what type of information they want

11 What else do patients want? HOW the news is delivered is critical Doctor s caring attitude was more important than the information provided during the clinical encounter (Siminoff et al., 1989) Sydney Study: 100 women, early breast cancer (Lobb et al, 2001) 91% wanted to know their prognosis, but 63% wanted the clinician to check with them first Majority wanted: Clinician to check their understanding Opportunity to ask questions Explain medical terms Emotional support (79%) Their fears & concerns listened to (97%)

12 What s Important to Patients Randell & Wearn (2005): The manner of the doctor Doctor s level of expertise Information needs beyond the diagnosis Support Two important factors (Back, 2002) Willingness to talk about dying Disclosing bad news sensitively

13 Impact on Patient How a patient will respond will differ The way news is conveyed can substantially influence the impact of receiving this news Schofield et al (2003): Discussions of serious news When doctors were willing to address patients feelings, patients had significantly fewer anxiety symptoms at 4 & 13 month f/up Maguire (1999): Greater satisfaction, less anxiety, and more treatment compliance when doctors asked about: Patient perceptions of their problems Patient reactions to their problems How illness impacted their daily lives

14 Balancing act Bousquet et al (2015): Metasynthesis Review of 40 studies, >600 oncologists, 12 countries Communication needs to be constantly adaptive & individualised Differs significantly from stereotypical communication training Describes breaking bad news as a balancing act : Individual relationship with patient Hospital system & environment Cultural factors Patient s family

15 Balancing act Balance between hope, sensitivity, emotions, and honesty Patient needs over time (Friedrichsen & Milberg, 2006) Patient preferences

16 Effective Communication 7 important themes (Burtow et al., 2002) 1. Communication within a caring, trusting, long term relationship 2. Open and repeated discussions about patient preferences for information 3. Clear, straightforward presentation of prognosis where desired 4. Strategies to ensure patient understanding 5. Encouragement of hope and a sense of control 6. Consistency of communication within the MDT 7. Communication with other members of the family

17 Effective Communication Fundamental prerequisites Information is Adequate Understood Believed Remembered Acted upon

18 Key elements in communicating serious news 1. Preparation & setting 2. Asking patient/family what they understand or perceive 3. Sharing the serious news 4. Attending to emotions as they arise 5. Planning & discussing next steps

19 1. Preparation & setting Time to prepare & gather all medical information needed (scans, results, consult with other drs) Quiet space Adequate time No distractions / pagers Support person present Emotional support Aids the later recall of information Only 25% of the important facts are recalled (Dunn et al., 1993) Interpreter

20 2. Asking the patient What do they already know? Prepares you to fill in the gaps Prevents any unnecessary confusion To start, I want to make sure we are on the same page. What is your understanding of your medical situation? What have the doctors told you so far? You had a CT scan of your stomach yesterday; what did the doctors say about why we did the CT?

21 3. Sharing the serious news Prepare the patient or not??? I m sorry that the test did not show what we hoped for or there is no easy way to say this Find their starting point, be gentle, but come to the point Use simple and direct language with attention to keeping the news brief Use pauses to allow the patient time to process

22 Language Patient confusion = major contributor to distress Medical terms and phrases scare and confuse patients; they are also the biggest source of misunderstanding E.g. 73% of patients did not understand the term median survival (Back, 2002) Simple language encourages patients to ask questions

23 What information to give? Key principles (Randell & Wearn, 2005): Tailor the information to patient wishes & what they re ready to hear Allow enough time Allow for silences Give information in stages Repeat information over time Avoid withholding information (even if relatives insist) Acknowledge distress and explore reasons for it Check that the patient would like to continue the discussion Be willing to answer questions openly and honestly

24 What information to give? Consider providing information about Diagnosis Prognosis Treatment options Life expectancy Impact of the disease on other aspects of their life (e.g. sexuality, roles) Fears are reduced when given enough factual information re: what is wrong + what emotional and physical symptoms to expect in the future Providing information about the prognosis and course of disease decreases anxiety and gives time to prepare for dying (Friedrichsen & Milberg, 2006)

25 Providing Reassurance and Hope Patients fear abandonment reassure that they will continue to be followed up and supported Reassurance to address fears E.g. analgesia will be given early and at an appropriate dose Reassurance fixing the problem Reassurance is found in being seen & heard

26 4. Attending to emotions Emotional responses can be an indicator that the patient has heard what you have said NURSE model (Smith, 2002) N ame It sounds like you are frustrated U R S nderstanding I can t imagine what it must be like for you espect You are asking all the right questions upport I will be around to answer any of your questions E xplore Tell me more about what you are thinking

27 The most important part of breaking bad news is how well you are able to respond to the other person s emotions

28 Compassion (Kearsley, 2011) Actively develop a deep awareness of another person s world Actively attempt to understand their suffering Actively desire to play our part in the person s healing

29 Sackett: The most powerful therapeutic tool you ll ever have is your own personality (Smith, 2003)

30 who you are may affect your patients as deeply as what you know. You will often heal with your understanding and your presence things you cannot cure with your scientific knowledge (Remen, 2001)

31 Emotions Am I going to die? recommend hearing the question as an emotion Listen for the emotion, and stay with the emotion Being able to sit with distress in the room I understand that you are scared I see how frightened/worried/ you are When emotionally overwhelmed = cannot process information Sitting with silence

32 5. Planning next steps Patients consistently want to know what comes next (Back et al., 2011) Why is it important? Reduces fears about the future Creates a sense of predictability May involve: Treatment planning Follow-up appointments Upcoming tests

33 Considerations Patients benefit from: Ongoing care; knowing that they will be seen regularly and kept informed A consistent doctor or for their doctor to be familiar with their case history (Randell & Wearn, 2005)

34 Considerations cont d Reasons for patients poor understanding or recall: Primacy and recency phenomena Emotional distress, nervousness, unrealistic expectations and the seriousness of the disease Patients experience of shock Disturbances in the consultation or perception of a hurried / disinterested doctor Language Cultural differences

35 SPIKES Protocol (Buckman1992) Step Setting Perception Invitation Knowledge Empathize Summary and Strategy Description of Task Establish rapport by creating an appropriate setting that provides for privacy, patient comfort, uninterrupted time, setting eye contact and inviting significant others (if desired) Elicit the patient s perception of his or her problem Obtain the patient s invitation to disclose the details of the medical condition Provide knowledge and information to the patient. Give information in small chunks, check for understanding, and avoid medical jargon Empathize and explore emotions expressed by the patient Provide a summary of what you said and negotiate a strategy for treatment or follow up.

36 Alternative Protocols ABCDE (Rabow, et al, 1999) Advance Build Communicate Deal Encourage BREAKS (Narayanan, et al, 2010) Background Rapport Explore Announce Kindling Summarise GUIDE (Back, 2013) Get Understand Inform Deepen Equip

37 For another presentation. When conflict is present Managing angry patients/family members Varied cultural perspectives & values

38 SELF MANAGEMENT

39 Using CBT to manage own anxieties Cognitive Behaviour Therapy can be used to influence our thoughts and behaviour when we have to break bad news Personal thoughts of having failed or feeling hopeless about the future for the patient may affect our communication and the help we offer

40

41 Unhelpful Thought The patient is going to get upset or angry and I don t know how to deal with them Avoid the conversation / procrastinate / try to get in and out really quickly Helpless Ashamed Worried Guilty

42 Unhelpful Thought Avoid the conversation / procrastinate / try to get in and out really quickly The patient is going to get upset or angry and I don t know how to deal with them I have let them down; I am a bad doctor Avoid or delay further consultations and follow up Helpless Ashamed Worried Guilty Feelings intensify

43 Helpful Thought The patient is likely to become distressed but this is a normal reaction and it is not a personal attack Sit with the patient during their distress Helpless Worried

44 Helpful Thought Sit with the patient during their distress Less discomfort approaching the family / patient for future consultations The patient is likely to become distressed but this is a normal reaction and it is not a personal attack That was difficult and I feel sad for them but I managed to provide support as best I could Helpless Worried Sadness Loss

45 Challenging Negative Thoughts Is this a helpful thought? Not if it leads to unhelpful feelings (guilt, shame etc) and behaviours (escape / avoidance) Is there evidence to support this thought? Evidence against? Weigh up evidence and come up with a more balanced thought Is there another way of looking at it? / What are some alternative thoughts? What would I say to a friend in this situation?

46 Self Care Be aware of transference and manage Know your own limitations Know how to access adequate backup and support for the patient and their family. What other services exist? Have support for yourself and opportunities to debrief when you need to Know what strategies you can put in place to support yourself in your workplace EAP

47 QUESTIONS?? St. Vincent s Hospital The Kinghorn Cancer Centre & Sacred Heart Rehabilitation Jennifer.Menon@svha.org.au Tara.Stern@svha.org.au

48 References Back, A. L. (2013). Vital Talk (1.0) [Mobile Application Software] (Accessed on January 13, 2015) Back, A.L., Trinidad, S.B., Hopley, E.K, et al. (2011). What patients value when oncologists give news of cancer recurrence: commentary on specific moments in audio-recorded conversations. Oncologist, 16, 342. Bor et al.. (1993). The meaning of bad news in HIV disease: counselling about dreaded issues revisited. Counselling Psychology, 6(1), Bousquet, G., Orri, M., Winterman, S. et al (2015). Breaking Bad News in Oncology: A Metasynthesis. J Clin Oncol, 33, Buckman, R. (1984). Breaking bad news: why is it still so difficult? Br Med J (Clin Res Ed), 288, Buckman, R. (1992). How to Break Bad News: A Guide for Health Care Professionals. Baltimore: Johns Hopkins Press. Burtow, P. N., Dowsett, S., Hagerty, R, & Tattersall, M. H. (2002). Communicating prognosis to patients with metastatic disease: what do they really want to know? Support Care Cancer, 10, 161. Cox, A., Jenkins, V., Catt, S., et al. (2006). Information needs and experiences: an audit of UK cancer patients. European Journal of Oncology Nursing, 10: 263. Dunn, S.M., Patterson, P.U, Butow, P.N, Smartt, H.H., McCarthy, W.H., Tattersall, M.H. (1993) Cancer by another name: A randomized trial of the effects of euphemism and uncertainty in communicating with cancer patients. J Clin Oncol, 11,

49 References Friedrichsen, M. & Milberg, A. (2006). Concerns about losing control when breaking bad news to terminally ill patients with cancer: physicians perspective. J Palliat Med, 9, 673. Fujimori, M. & Uchitomi, Y. (2009). Preferences of cancer patients regarding communication of bad news: a systematic literature review. Jpn J Clin Oncol, 39, 201. Kearsley, 2011 (2011). In the nighttime of your fear: The anatomy of compassion in the healing of the sick. Palliative and Supportive Care, 9, Lobb, E. A., Kenny, D. T., Butow, P. N., & Tattersall, M. H. (2001). Women s preferences for discussion of prognosis in early breast cancer. Health Expect, 4, 48 Maguire, P. (1999). Improving communication with cancer patients. Eur J Cancer, 35, Narayanan, V., Bista, B. & Koshy, C. (2010). BREAKS Protocol for Breaking Bad News. Indian J Palliat Care, 16, 61. Ptacek, J. T., Ptacek, J. J. & Ellison, N. M. (2001). I m sorry to tell you physicians reports of breaking bad news. J Behav Med, 24, 205. Rabow, M. W., & McPhee, S. J. (1999). Beyond breaking bad news: how to help patients who suffer. West J Med, 171, 260. Randell, T.C & Wearn, A.M. (2005). Receiving bad news: patients with hameatological cancer reflect upon their experience. Palliative Medicine, 19(8),

50 References Remen, R.N. (2001b). The power of words. Western Journal of Medicine, 175, Rosenbaum, M.E., Ferguson, K.J., Lobas, J.G. (2004). Teaching medical students and residents skills for delivering bad news: a review of strategies. Acad Med. 79(2), Rutten, L.J., Arora, N. K., Bakos, A.D., et al. (2005). Information needs and sources of information among cancer patients: a systematic review of research ( ). Patient Educ Counsl, 57, 250. Schofield, P. E., Butow, P. N., Thompson, J. F., et al (2003). Psychological responses of patients receiving a diagnosis of cancer. Ann Oncol, 14, 48. Seifart, C., Hofmann, M. Bar, T., et al (2014). Breaking bad news what patients want and what they get: evaluating the SPIKES protocol in Germany. Ann Oncol, 25, 707. Shaw, J. Brown, R., Heinrich, P. & Dunn, S. (2013). Doctors experience of stress during simulated bad news consultations. Patient Educ Couns, 93, 203. Siminoff LA, Fetting JH. (1989) Effects of outcome framing on treatment decisions in the real world: impact of framing on adjuvant breast cancer decisions. Med Decis Making, 9, Smith, R.C. (2002). Patient-Centred Interviewing: An Evidence-Based Method. Philadelphia: Lippincott Williams & Wilkins. Smith, R. (2003). Thoughts for new medical students at a new medical school. British Medical Journal, 327,

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