Multiple Goals: a Framework for Understanding and Improving Quality in End of Life Communication

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Bryce French
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1 A Commo Practice White Paper Multiple Goals: a Framework for Uderstadig ad Improvig Quality i Ed of Life Commuicatio There is a emergig cosesus i healthcare that i order to improve ed of life care, we must improve ed of life commuicatio. However, we require a framework to uderstad what quality commuicatio is i order to improve it. This white paper explores such a framework: multiple goals. We suggest that this framework ca help spur the ecessary advaces i ed of life commuicatio by providig a more robust uderstadig of what is happeig below the surface i coversatios that cause the discussios to succeed or fail. WHY CONVERSATION QUALITY MATTERS Coversatios about death ad dyig are otoriously complex ad difficult to avigate. They are also a crucial compoet of healthcare for every perso. The reasos for focusig resources o improvig ed of life commuicatio cut across all aspects of healthcare, from improvig patiet satisfactio 1 to reducig costs; 2 from aligig care with patiets wishes 3 to reducig stress amog doctors, urses, 4 ad other caregivers; 5 from alleviatig axiety 1 Morss, S., Shugarma, L.R., Loreze, K. A., Mularski, R. A., Ly, J., A systematic review of satisfactio with care at the ed of life. Joural of the America Geriatrics Society. 2008; 56(1): Ahres, T., Yacey, V., Kollef, M. Improvig family commuicatio at the ed of life: implicatios for legth of stay i the itesive care uit ad resource use. America Joural of Critical Care. 2003;12: Parks, S. M., Witer, L., Sataa, A. J., Parker, B., Diamod, J. J., Rose, M., Myers, R. E. Family factors i ed-of-life decisio-makig: family coflict ad proxy relatioship. Joural of Palliative Medicie. 2011;14: Oberle, K., Hughes, D. Doctors ad urses perceptios of ethical problems i ed-of-life decisios. Joural of Advaced Nursig. 2001;33: Deterig, K. M., Hacock, A. D., Reade, M. C., Silvester, W. The impact of advace care plaig o ed of life care i elderly patiets: Radomised cotrolled trial. British Medical Joural. amog family members 6 to reducig physicia errors. 7 For these reasos, improvig commuicatio about ed of life care has become a cetral missio for may healthcare istitutios ad a growig umber of idepedet orgaizatios. The Istitute of Medicie s (IOM) recet report, Dyig i America, 8 released i September 2014, devotes a etire chapter to ed of life commuicatio ad plaig. Ad eve outside of that chapter, commuicatio It s ot eough simply to have the coversatios, those coversatios must be of very high quality. James A. Tulsky, MD Chief, Duke Palliative Care ad member of the Istitute of Medicie (IOM) Committee o Approachig Death: Addressig Key Ed-of-Life Issues permeates the report, with the subject comig up a average of oce every other page i the other chapters of the 506-page documet. Ad yet, despite the attetio ad resources devoted to improvig ed of life commuicatio, fidig effective itervetios has bee difficult. For istace, a study of 2010;340:c Lautrette, A., Darmo, M., Megarbae, B., Joly, L. M., Chevret, S., Adrie, C., et al. A commuicatio strategy ad brochure for relatives of patiets dyig i the ICU. New Eglad Joural of Medicie. 2007;356: Slort, W., Schweitzer, B. P. M., Blakestei, A. H., Abarshi, E. A., Riphage, I., Echteld, M. A., et al. Perceived barriers ad facilitators for geeral practitioer-patiet commuicatio i palliative care: a systematic review. Palliative Medicie. 2011;25(6): Istitute of Medicie. Dyig i America: Improvig Quality ad Hoorig Idividual Prefereces Near the Ed of Life. Washigto, DC: The Natioal Academies Press Commo Practice LLC page 1 of 5

2 over 400 patiets i Akro, Ohio, tested whether the use of advace directives could improve surrogate decisio-makers ability to make accurate choices about a variety of treatmet optios ad illess scearios. No improvemet was observed with the use of either of two differet kids of advace directive forms, eve whe a structured discussio betwee patiets ad surrogates about the patiets reasoig behid their choices was added. 9 A CONCEPTUAL FRAMEWORK TO IMPROVE UNDERSTANDING While there cotiue to be may improvemets i drug therapies, surgery, ad other treatmets, the medical commuity does ot have a reputatio for iovatio i the area of commuicatio. I fact, the icreasig treatmet optios available for people earig the ed of life may have a egative effect o commuicatio because life-extedig treatmets offer the hope of edlessly puttig off coversatios about somethig that every perso will have to face: what we wat at the ed of our lives. How, the, to improve ed of life commuicatio i healthcare? First, we must improve our uderstadig of commuicatio ad what costitutes high- ad low-quality coversatios. For this, we eed frameworks ways of makig coceptual distictios ad orgaizig ideas. Frameworks allow us to aalyze ad direct research ad develop commo laguage for dissemiatio. Ad frameworks ca be tested to esure they are useful for makig chages ad improvemets i real world situatios. I healthcare, frameworks allow us to uderstad ad improve treatmets ad dissemiate iformatio about those treatmets. But i order to improve ed of life commuicatio, we should look beyod medicie, to commuicatio research, where progress has bee made o defiig frameworks ad measurig quality i this area. THE MULTIPLE GOALS FRAMEWORK Researchers Alliso M. Scott (Uiversity of Ketucky) ad Joh P. Caughli (Uiversity of Illiois) use a multiple goals framework i their paper Eacted Goal Attetio i Family Coversatios about Ed-of-life Health Decisios. 10 This paper applies previous research o multiple goals theory to coversatios about ed of life issues betwee parets ad their adult childre. Multiple goals theory is based o the idea that people egage i commuicatio i order to achieve multiple, ofte 9 Ditto, P. H., Daks, J. H., Smucker, W. D., Bookwala, J., Coppola, K. M., Dresser, R., et al. Advace directives as acts of commuicatio: a radomized cotrolled trial. Archives of Iteral Medicie. 2001;161: Scott, A. M., Caughli, J. P. Eacted goal attetio i family coversatios about ed-of-life health decisios. Commuicatio Moographs. 2014;81(3): coflictig goals. Research i this area has revealed a wide variety of possible goals, but three broad types of goals appear i coversatios o almost ay topic: task, relatioal, ad idetity. 11 Task goals are likely the first that come to mid whe thikig about commuicatio. These are the goals that are right o the surface ofte the stated goals ad i ed of life commuicatio they ca iclude makig decisios about treatmets, seekig iformatio, ad providig support. Examples of messages that illustrate task goals: Expressig prefereces (e.g., I do t wat to go back to the hospital agai. ) Requestig support (e.g., Ca you ask the urse if there s somethig he ca do for my ausea? ) Seekig iformatio (e.g., Are you feelig up for visitors today? ) Relatioal goals are less obvious tha task goals at first glace. These are meat to chage or reiforce the coectio oe perso has with aother. Pursuig relatioal goals might iclude commuicatio meat to recocile differeces, maitai coectios, ad affirm bods. Examples of messages that illustrate relatioal goals: Recocilig differeces (e.g., I m glad we talked that through. ) Expressig solidarity (e.g., We ll get through this. ) Affirmig bods (e.g., I m glad we re close eough to talk about these thigs. ) Idetity goals, also difficult to perceive at first, are focused o maagig impressios, both of the speaker ad of the listeer. This icludes thigs like preservig autoomy, maitaiig digity, ad egotiatig roles. I practice, pursuig idetity goals ca mea avoidig topics oe thiks are embarrassig to aother perso or reiforcig oe s ow or oe s parter s autoomy. Examples of messages that illustrate idetity goals: Expressig approval (e.g., That seems like a smart way to go. ) Ecouragig autoomy (e.g., Do you wat to try this o your ow? ) Affirmig respect for decisios (e.g., I wat to make sure your choices are respected. ) Multiple goals theory suggests that people are usually pursuig several, ofte coflictig, goals i a coversatio 11 Clark, R. A., & Delia, J. G. Topoi ad rhetorical competece. Quarterly Joural of Speech. 1979;65(2): Multiple Goals Framework i Ed of Life Commuicatio page 2 of 5

Multiple Goals Framework Task gatherig iformatio recordig decisios ifl uecig choices Relatioal recocilig differeces maitaiig coectios affi rmig bods Idetity preservig autoomy maitaiig digity

Further, i coversatios about complex ad highly persoal topics, there are a larger umber of possible goals ad a greater likelihood that achievig oe will cause aother to be dowplayed or igored.

12 A coversatio that focuses o oe category is ot oly less likely to achieve the goals i the other two, but also less likely to achieve the goals i the category a participat is focused o.

Eve without the multiple goals framework to clearly idetify categories, participats ofte eter these coversatios with a sese that they are futile ad ulikely to lead to good outcomes because they

However, focusig oly o achievig this outcome (a task goal) without reassurig her about her importace to him (a relatioal goal) ad ivitig her to express her ow opiios ad autoomy (a idetity goal) is

Joural of Social ad Persoal Relatioships. 2010;27:824-848.

Adult childre are frequetly the surrogate decisio-makers for their parets, ad i the complex ad rapidly chagig eviromets i which these decisios are ofte made, documets such as advace directives

3 Multiple Goals Framework Task gatherig iformatio recordig decisios ifl uecig choices Relatioal recocilig differeces maitaiig coectios affi rmig bods Idetity preservig autoomy maitaiig digity egotiatig roles at the same time. Differet people i the same coversatio ofte have coflictig goals, ad a perso s goals ca evolve ad chage, eve durig a sigle coversatio. Further, i coversatios about complex ad highly persoal topics, there are a larger umber of possible goals ad a greater likelihood that achievig oe will cause aother to be dowplayed or igored. Usig the multiple goals framework, previous research has show that the quality of a coversatio is depedet o how well the participats balace attetio to task, relatioal, ad idetity goals. 12 A coversatio that focuses o oe category is ot oly less likely to achieve the goals i the other two, but also less likely to achieve the goals i the category a participat is focused o. Ayoe who has egaged i or helped others avigate ed of life coversatios is likely to have see this firsthad. Eve without the multiple goals framework to clearly idetify categories, participats ofte eter these coversatios with a sese that they are futile ad ulikely to lead to good outcomes because they ivolve a complex emotioal balacig act. For example, i a coversatio about dialysis, a so might have the goal of covicig his mother to accept treatmet. However, focusig oly o achievig this outcome (a task goal) without reassurig her about her importace to him (a relatioal goal) ad ivitig her to express her ow opiios ad autoomy (a idetity goal) is less likely to yield a positive coclusio for either party. 12 Caughli, J. P. A multiple goals theory of persoal relatioships: coceptual itegratio ad program overview. Joural of Social ad Persoal Relatioships. 2010;27: MULTIPLE GOALS IN END OF LIFE CONVERSATIONS Commuicatio betwee family members is oe of the most importat factors i determiig the quality of care i ed of life situatios. Adult childre are frequetly the surrogate decisio-makers for their parets, ad i the complex ad rapidly chagig eviromets i which these decisios are ofte made, documets such as advace directives typically do t cotai eough iformatio to be a useful guide. 13 Cliicias frequetly tur to surrogate decisio-makers whe they are treatig patiets who are uable to make those decisios themselves. 14 All of this idicates that Scott ad Caughli s choice of research subjects pairs comprised of older parets ad their adult childre will be particularly relevat to ayoe iterested i improvig ed of life commuicatio. The 121 pairs i their study were also allowed to choose the locatio (most ofte their ow homes) for their coversatios. While ay study is by ecessity less realistic tha aturally occurrig behavior, this research was geared toward gatherig data i circumstaces similar to oes that people ecouter i their everyday lives. I order to stimulate a discussio, each pair was give cards with prompts about ed of life issues ad left to talk with each other for as log as they wished. The prompts 13 Abbo, E. D., Sobotka, S., Meltzer, D. O. Patiet prefereces i istructioal advace directives. Joural of Palliative Medicie. 2008;11: Buchaa AE, Brock DW. Decidig for Others: The Ethics of Surrogate Decisio Makig. New York, NY: Cambridge Uiversity Press; Multiple Goals Framework i Ed of Life Commuicatio page 3 of 5

4 reflected the mai types of ed of life health choices families must make, ad the coversatios were recorded ad trascribed for aalysis. Participats also filled out pre- ad post-coversatio surveys. RESEARCH FINDINGS Scott ad Caughli foud that i these coversatios oe perso s expressig approval of the other ad affirmig the Multiple Goals used i ew research o Ed of Life Coversatio game A team of researchers at Pe State Milto S. Hershey Medical Ceter, led by Dr. Laure Va Scoy, a pulmoary ad critical care physicia who specializes i ed-of-life issues, have published a ew study that applies a multiple goals theoretical framework to coversatios betwee players of My Gift of Grace, a game about ed of life issues. Dr. Va Scoy s team also released a study measurig the impact the game has o the performace of subsequet advace care plaig activities. We re seeig that game is stimulatig high quality coversatios that players are ejoyig ad cosider realistic. What s more, is that a majority also go o to perform additioal advace care plaig activities. Dr. Laure Va Scoy Dr. Michael Gree, a Professor of Medicie ad Humaities also at PSHMC, has bee doig research i advace care plaig for over a decade. What s iterestig about My Gift of Grace is that it egages people i discussig topics that are otherwise upleasat. This is oe of the first tools I ve see that turs advace care plaig ito a activity that people ejoy. Dr. Va Scoy s research is importat because it helps guide people to have difficult coversatios. I a secod study o behaviors followig the game, 74% of people who played My Gift of Grace wet o to 74% perform a advace care plaig activity after playig the game. These two studies were released at the America Thoracic Society 2015 Iteratioal Coferece i Dever, Colorado i May Research to watch for Dr. Va Scoy was recetly awarded a Parker B. Fracis Foudatio grat from the America Thoracic Society to study the effects of My Gift of Grace i a larger, radomized cotrolled trial. importace of their relatioship related to icreased satisfactio with the coversatio o the part of both participats. Ad, iterestigly, a perso s ow satisfactio was icreased by expressig respect for their parter s autoomy. Attetio to relatioal goals was also associated with both parters hopefuless at the coclusio of the coversatio. Additioally, a overall high-quality coversatio (as measured by balaced attetio to task, relatioal, ad idetity goals) o the part of oe perso resulted i fewer hurt feeligs for their parter. Satisfactio with coversatios is particularly importat i this area because ed of life decisio-makig is ot a static process. Prefereces chage over time ad with circumstaces, so it is importat that these topics are explored multiple times. Positive experieces ecourage this, while usatisfyig oes are likely to lead to people avoidig these topics i the future. Positive emotioal reactios to coversatios are also importat because of their implicatios for decisio-makig. Scott ad Caughli poit out that previous studies show that whe people experiece positive emotio durig a coversatio, they are less likely to disegage from the iteractio ad they retai the ability to process iformatio clearly, which ca help promote a perso s ability to make soud ed-of-life decisios. 15 Fially, previous research has suggested that participats satisfactio with a coversatio is related to how much attetio is paid to the subject of the coversatio: the task goals. But surprisigly, this study suggests that i coversatios about ed of life health decisios, attetio to relatioship ad idetity goals was actually more importat tha attetio to task goals i predictig how satisfied participats are with those coversatios. Take together, these results poit to the value of a multiple goals framework i evaluatig ad improvig ed of life coversatios. IMPLICATIONS A framework is oly useful if it helps us make decisios ad take actio i the real world. A defiitio of quality is oly valuable if it suggests ways i which we ca improve outcomes. I our work o ed of life decisio-makig with healthcare professioals, we ofte hear that oe or two staff members o a team are particularly skillful at avigatig ed of life coversatios while others struggle. Studies like this oe help us defie what skills are ivolved i high-quality ed of life commuicatio. The framework also allows us to trai staff to idetify task, idetity, ad relatioal goals i coversatios ad to reiforce the importace of all three. This should help icrease satisfactio, decrease hopeless- 15 Frijda, N. H., Kuipers, P., ter Schure, E. Relatios amog emotio, appraisal, ad emotioal actio readiess. Joural of Persoality ad Social Psychology. 1989;57: Multiple Goals Framework i Ed of Life Commuicatio page 4 of 5

5 ess ad hurt feeligs, ad geerally improve relatioships. I other words, the multiple goals framework gives us a way to see the deeper structures of coversatio ad equip ourselves to be better at maagig ed of life health decisios. It gives us a path to move from declarig that quality commuicatio is importat to uderstadig, evaluatig, ad improvig that commuicatio with specific ad targeted itervetios. May itervetios curretly i use are geared toward better data collectio ad dissemiatio, such as clearer advace directive forms ad better itegratio ito electroic health records. This research suggests that these are ecessary but ot sufficiet steps. Icorporatig lessos from multiple goals research ca help us create itervetios that better icorporate relatioal ad idetity goals. As oe example, i our game that facilitates ed of life coversatios (My Gift of Grace), there are mechaics that direct players to focus o affirmig other people s autoomy. Great commuicators do this aturally; the rest of us ca lear to be better at it with practice, especially whe we receive positive feedback i the form of better iteractios. More o uderstadig quality i ed of life commuicatio To fid out more about quality i ed of life commuicatio, visit mygiftofgrace.com/whitepapers to dowload our previous white paper, Accommodatio: Whe commuicatig about ed of life issues, it matters how people speak. While you re there, be sure to sig up for our e-ewsletter to keep iformed about ed of life commuicatio ad decisio-makig. Like ay commuicatio i healthcare, there are real limits o the amout of time ad attetio that ca be paid to ed of life coversatios. Also, fear ad ucertaity make these coversatios difficult to avigate. This makes kowledge of what costitutes a quality coversatio all the more importat. Uderstadig this aspect of commuicatio allows us to help healthcare practitioers, patiets, ad families improve ed of life decisio-makig. About the author: Nick Jehle is a parter at Commo Practice, a compay that provides products ad services that improve ed of life commuicatio ad decisio-makig. Nick is the lead desiger of My Gift of Grace. Improvig ed of life commuicatio: a system for healthcare staff Commo Practice is a healthcare iovatio compay that focuses o oe of the most pervasive problems i healthcare today: the avoided coversatios about death ad dyig. Most patiets who receive a diagosis of serious illess have axiety ad distress about death. That axiety ca be very distractig ad ca keep patiets from absorbig importat iformatio ad prevet shared decisio-makig. The loger these coversatios are avoided, the more axiety they produce, which reduces the optios for providig the best care possible. Commo Practice has developed a system that iterrupts this cycle. We work with healthcare orgaizatios to build staff commuicatio capabilities related to serious illess ad ed of life issues. Usig workshops, traiigs, ad iovative tools, we help healthcare staff provide great care to patiets, families, ad commuities. To fid out how you ca put our tools to work i your orgaizatio, cotact Jethro Heiko at jethro@commo-practice.com or Multiple Goals Framework i Ed of Life Commuicatio page 5 of 5

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