Offering Hope in a Hopeless Situation (Peter Bjerkerot, BSN, OCN)

Offering Hope in aHelpless Situation:Delivering Bad NewsPeter Bjerkerot RN, OCN1339 Normandy DriveAtlanta, GA 30306-2574404.754.5952WebPage http://boyrn.competer.bjerkerot@mindspring.com

Full Disclosure Statement‣ Celgene‣ Nurse Advisory Boards (Breast)‣ Nurse Speaker’s Bureau‣ Pfizer Oncology‣ Nurse Advisory Boards (Colorectal & Breast)‣ Nurse Speaker’s Bureau‣ ProStrakan‣ Speaker’s Bureau

Francis (Francie) Jones“What happens in a hospital (or whensomeone is sick) will happen if you are thereor not.If you can make the experience just a littlebetter—that’s what it is all about.”--Personal conversation at lunch 1978

Imogene King‣ Human beings are open systems in constantinteraction with the environment‣ Personal System‣ Individual; perception, self, growth, development,time space, body image‣ Interpersonal‣ Socialization; interaction, communication/transaction‣ Society‣ Family, religious groups, schools, work, peers

Imogene King‣ The nurse and patient mutuallycommunicate, establish goals and takeaction to attain goals‣ Each individual brings a different set ofvalues, ideas, attitudes, perceptions toexchangeTaylor Carol ,Lillis Carol (2001)The Art and Science Of Nursing Care 4th ed.Philadelphia, Lippincott

Imogene King‣ If role expectations and role performance asperceived by nurse-client are congruent, transactionwill occur‣ If role conflict is experienced by nurse or client orboth, stress in nurse-client interaction will occur‣ If nurse with special knowledge skill communicateappropriate information to client, mutual goal settingand goal attainment will occur.Taylor Carol ,Lillis Carol (2001)The Art and Science Of Nursing Care 4th ed.Philadelphia, Lippincott

Evelyn Phylaw Polk“You have been and RN for 5 years now—youMUST be a resource for your colleagues,patients and family at every opportunity”Personal conversation, 1989“It is your professional responsibility to be amentor and to share your experience, strength,knowledge and hope with all of yourcolleagues.”Personal conversation, 2001

HOPEHope is a stateof heart…

What is HOPE?‣ …complex and multidimensional‣ …changing and redefined by patients overtime‣ …found to influence positive adjustment inpatients with cancer‣ …continues to be a focus of (ONS) research.‣ Although many nursing interventional studieshave been done, much more is needed

Hope vs. Helplessness‣ Hope: A pleasurable feeling associated withyour belief that something you want mighthappen‣ Prerequisite for hope is uncertainty‣ Helplessness: An unpleasant feeling thatoutcomes are out of your control‣ Locus of control is completely external‣ Leads to decreased QOL and lower self esteem,anxiety and depression

Good News vs. Accurate News‣ Hoping for “Good News”may lead to unachievableexpectations‣ Hoping for “AccurateNews” may help explainwhy he/she feels sick, orcorrectly reflect thepatient’s conditionHarpham, Wendy; Oncology Times 9/25/2011‣ Patients who hope foraccurate news may bemore apt to notice andreport changes and otherinformation compared tothose who hope for goodnews.‣ Sets the stage for patientsto perceive “bad news”as “helpful news”.

Healing Power of Hope‣ We have aprofessional obligationto remain objective‣ Hope for accuratenews prevents youremotions fromclouding yourjudgment‣ “Working together we canobtain the best informationabout your condition. Thebest information helps usmake the best decisionsabout your care…hopingfor accurate news nowincreases our chance forgood news down the line”Harpham, Wendy; Oncology Times 9/25/2011

Osler’s Mandate“Relieve as often as possible andcomfort always”Osler, William; The principles and practice of medicine, 1892

BurnoutCommunication of Bad/DifficultNews is a Leading Source ofClinician BurnoutRamirez AJ, et al. Burnout and psychiatricdisorder among cancer clinicians. Br JCancer June 1995;71:1263-1269Graham J, et al. Stress and burnout indoctors. Lancet 2002;360:1975-1976

Stress Associated withBad/Difficult News‣ In a large survey of oncologists, 20% reportedanxiety and strong emotions when they had to tella patient that his/her condition would lead todeath.‣ In a more detailed study of 73 physicians,31(42%) indicated that, while the stress oftenpeaks during the encounter, the stress from a badnews encounter can last for hours to 3 or moredays afterwards.Department of Medicine and Department of Health Services University of Washington School ofMedicine Seattle, WA 98195

Stress experienced by physician andpatient in the discussion of bad newsNurse enters room

Patient Responses toBad/Difficult News‣ In a study of patients who were diagnosed ashaving cancer, the most frequent responseswere:‣ shock (54%)‣ fright (46%)‣ acceptance (40%)‣ sadness (24%)‣ and “not worried” (15%)West J Med. 2002 May; 176(3): 177–180.

Managing Uncertainty‣ Cannot actually manage uncertainty, only the patient’sreaction to uncertainty.‣ Shift locus of control to patient and away from the event(outcome)‣ Reasons for uncertainty:‣ Lack of complete information‣ Statistical probability (Problematic)‣ Compassion stems from understanding how a patient’sreaction to uncertainty impact their decisions and QOL.

Uncertainty MatrixUncertaintydue to Lack ofKnowledgeProblematicUncertainty(Statistical probability)DecisionMaking andQuality OfLifeCourage to ActSerenity to Wait…Grant me the SERENITY to accept the thing Icannot change,The COURAGE to change the things I can,And the WISDOM to know the difference.--Niebuhr--

Putting it into action:Courage to Act‣ Scans, Labs, Consults‣ Other Treatment Options‣ Available Clinical Trial‣ Financial Counseling‣ Monitored Websites“Let’s see what other steps wecan take to stack the cards inyour favor”Serenity to Wait‣ HONEST reassurance that asa team (patient, family,healthcare team) we havemade the best decision‣ Help patient to channelnegative feelings (despair,anxiety, loneliness, anger,etc.) into positive actions‣ Support groups, bibliotherapy,psychotherapy, DignityTherapy, end of life work

Communicating DifficultInformation‣ Not Much Training in This Area‣ Aspects most valued by patients and families:‣ Feel Guided‣ Build Trust‣ Support Hope‣ Physicians and Nurses Typically Miss theFull Range of Patient Concerns**NCI Grant # R25 92055

6-Step Approach for DeliveringBad News‣ Prepare‣ Assess Patient Understanding‣ Determine What the Patient Wants to Know‣ Share Information‣ Acknowledge Patient’s Reaction‣ Plan Follow-ThroughBuckman, R. How to break bad news: A guide for health care professionals. Toronto, Canada:University of Toronto Press: 1992

6-Step Approach for DeliveringBad News‣ Prepare‣ Face to Face better than over the phone‣ Find a private place‣ Turn off Pagers and cell phones‣ Assess Patient Understanding‣ Goal is to establish the accuracy of the patient’s currentunderstanding and discover if there are emotional issuesthat need to be addressed‣ Determine What the Patient Wants to Know‣ Ask the question directlyBuckman, R. How to break bad news: A guide for health care professionals. Toronto, Canada:University of Toronto Press: 1992

6-Step Approach for DeliveringBad News‣ Share Information‣ Do not use medical jargon‣ Give information in small, digestible pieces‣ Diagnosis, Treatment Plan, Prognosis, Support‣ Acknowledge Patient’s Reaction‣ Requires concentration and sensibility‣ Acceptance rarely occurs in first interview‣ Plan Follow-Through‣ Blend information with issues raised in the first 5 stepsBuckman, R. How to break bad news: A guide for health care professionals. Toronto, Canada:University of Toronto Press: 1992

Things to Avoid‣ Blocking‣ Failure to Respond or Redirect Issue Raised‣ Lecturing‣ Delivering a Lot of Information Without Giving thePatient/Family an Opportunity to Ask Questions‣ Collusion‣ “Don’t Ask/Don’t Tell‣ Premature Reassurance‣ Respond to Patient Concerns with Reassurance WithoutExploring the Issues Behind the ConcernCA Cancer J Clin 2005;55:164-177

Fundamental CommunicationSkills: Things to Cultivate‣ 1. Ask-tell-ask‣ 2. Tell me more‣ 3. Respond to emotions with NURSEN = NamingU = UnderstandingR = RespectingS = SupportingE = ExploringCA Cancer J Clin 2005;55:164-177

Smith RC. Patient-centered interviewing: an evidencedbasedmethod. Philadelphia: Lippincott Williams&Wilkins;2002.NURSE-”It’s all in the name”‣ N = Naming‣ Name the emotion‣ “It sounds like you are worried about children’s reaction to yourchemotherapy”‣ U = Understanding‣ Sensitive Appreciation of Patient’s Predicament or Feelings‣ Avoid Pre-mature Reassurance (HUGE Temptation)‣ Make Sure You Understand (exploring/active listening/silence)

NURSE-”It’s all in the name”‣ N = Naming‣ U = Understanding‣ R = RespectingSmith RC. Patient-centered interviewing:an evidenced-based method. Philadelphia:Lippincott Williams &Wilkins;2002.‣ Can be Non-Verbal (SOLER Listening)/SIT Down‣ Acknowledge emotion (Try to match your acknowledgement with theintensity of patient’s expression of emotion)‣ S = Supporting‣ Express Concern, State your Understanding, Offer Help‣ Acknowledge Patient’s Efforts to Cope‣ E = Exploring‣ Ask Additional Focused Questions or Express an Interest inSomething the Patient Said Earlier

SOLER Listening‣ S= Square shoulders‣ O= Open arms‣ L= Lean forward‣ E= Eye contact‣ R= Relaxed breathing

S-I-T Down‣S=Select a seat at same level as patient‣I=Invite conversation‣T=Touch/Talk/Tone

OUR Issues with DifficultDiscussions‣ Professional norms‣ Time limitations for staff‣ Power differences between provider and patient‣ Staff members’ own culture, experience,personality‣ Patient anger directed at medical team‣ Staff members’ own emotions‣ Triangulation of patient-nurse-physicianSheldon, Barrett, Ellington, 2006

A Little DiversionTime for a pop-quiz!

OUR Humanism‣ You are human—caring and compassionate‣ It is a hard message to give‣ You have cancer, you are dying, something bad has happened‣ Your own “stuff”‣ Tired, busy, over-extended, home/life issues‣ Transference‣ What if this was me—my family member‣ Multiple Loss Syndrome

Experienced DifferentlyHealthcare Provider‣ Multiple “deliveries”‣ Professional boundaries‣ Medical expertise‣ Fluent in the language‣ One member of a team‣ Balancing a caseloadPatient‣ 1 st time “hearing” the news‣ Emotional affirmations (+/-)‣ Layperson knowledge‣ Foreign language‣ Me, myself, I‣ “I trust you, I need you”Burnett, Laurel and Cain, Victoria, 3 rd Annual SW Regional Oncology Nursing Symposium 8/13/2011

Morgan, RL. Calming upset Customers: Staying Calm During Unpleasant Situations, MelanoPark CA: Crisp Publications; 1996: pp 10-61Reasons Patients Get Upset‣ News delivered is differentthan what they expected‣ Expectations not being met‣ Patient was already upset atsomeone or something‣ Patient is tired, stressed, notfeeling well‣ Someone in your institutionwas rude, indifferent,discourteous‣ Information given by theMD and RN is different‣ Long wait to be seen‣ Cost issues‣ Feel if he/she is loud, his/herneeds will be addressed‣ Patient’s integrity or honestyis questioned‣ Patient does not feel thatthey are being takenseriously

What the Upset Patient Wants‣ To be taken seriously‣ To be treated withrespect‣ To feel important‣ Immediate action‣ Some form ofrestitution‣ Someone to bereprimanded‣ To clear up theproblem so it will nothappen again‣ To be listened to‣ A truthful answerMorgan, RL. Calming upset Customers: Staying Calm During Unpleasant Situations, MelanoPark CA: Crisp Publications; 1996: pp 10-61

Moving toward healing‣ ACCEPTANCE‣ Incorporate the event into one's world image and move on‣ The goal of all grief work‣ Acceptance DOES NOT EQUAL Approval/Agreement‣ Rituals‣ Used to help move to a place of integration of loss‣ Can “fast track” process to acceptance‣ Focuses Mindful Awareness‣ Takes many forms‣ Need to find one that will work for you and/or yourcolleagues (There is not cookie cutter approach)

Use of Ritual in Multiple LossWork (3 Phases)‣ Separation – the intentional leaving of aconnection to meaning‣ Transition – the old reality is no longerpresent; the new reality is not yet known‣ Incorporation – when enough of atransformation has occurred to lead to a newsense of self and a new reality

Dignity Therapy (DT)‣ Substantial Benefits over Palliative Care(PC) and Client Centered Care (CCC)‣ Concept:‣ 326 Terminally Ill Patients‣ Canada, USA, Australia‣ Randomly Assigned to One of Three Arms‣ DT=108 – PC=111 – CCC=107Lancet Oncology 2011; 12:753-762

Dignity Therapy (DT)‣ Allow Patients Nearing Death to Discussand Document Things They Want to beKnown or Remembered For‣ Edited and Transcribed and Given to Patient‣ Patient Can Share or Bequeath toIndividuals of Their ChoiceLancet Oncology 2011; 12:753-762

Dignity Therapy‣ Outcome= Significantly (Statistically) Improved‣ Quality of Life‣ Enhanced Sense of Dignity‣ Changed How Family Saw and Appreciated Patient‣ Provided Benefit to Relatives‣ Data Regarding Mitigating Outright Distress NotYet Proven Including:‣ Depression, Desire for Death, or SuicidalityLancet Oncology 2011; 12:753-762

What I’ve Heard Patients Say ToMe About My ColleaguesAll I know isthat shewas therewith me

Ulla Bjerkerot“It’s not what happens to a person thatis important……it is what a person does with whathappens that matters”Personal conversation—My entire life

Peter Bjerkerot RN, OCN1339 Normandy DriveAtlanta, GA 30306-2574404.754.5952WebPage http://boyrn.competer.bjerkerot@mindspring.comThank youAny Questions???