Engaging in End f Life Cnversatins with Patients and Families: A Fur Part Series Part One: General Explratin f End f Life Optins We receive training and build skills thrughut ur careers that allw us t engage with patients in cnversatins with the hpe f building trusted therapeutic relatinships. It is thrugh these trusted relatinships that we are able t prvide infrmatin and imprtant linkages which assist patients with decisin making thrughut the health care cntinuum, including at the end f life. Supprting patients, during the serius and emtinal cnversatins which are required, and allwing them t explre their thughts and feelings and their unique values withut fear f judgment is what supprts the delivery f high quality care. Further t ur skills and training, we have the ability t empathize with, and t advcate fr, the needs and wishes f ur patients while hlding true t ur wn values. And, mst imprtantly, we are highly skilled listeners. Listening carefully t the nature f the patient s questins, cncerns and wishes help us cnnect ur patients and their families t the services that mst apprpriately fit their unique needs and wishes, and supprt their persnal values. Despite all this, we have lng knwn that cnversatins abut end-f-life care can be very difficult fr ur patients, their families and fr urselves. Nw that medical assistance in dying is part f ur new health care reality, ur skills, training and ability t empathize, advcate and t listen will be a challenge nw mre than ever. Preparing Yurself: Enhancing knwledge, explring emtins The recent decriminalizatin f medical assistance in dying has challenged the values f many health care prviders and has led t uncertainty abut rles. This uncertainty has made sme health care prviders apprehensive t engage in cnversatins with patients. Equally challenging is knwledge f, and being able t apprpriately discuss, ther end f life care ptins that may be relevant in the cntext f each individual patient. Befre we can engage in cnversatins with patients and families abut heath care chices, we first need t educate urselves abut what ptins are available. This is n different fr end f life care chices. And, f equal imprtance, is ur wn need t explre and acknwledge ur feelings abut thse ptins. T address this struggle, we suggest that the first step t develping the skills yu need t have fr these imprtant cnversatins abut end f life care with patients and families, which may include medical assistance in dying, is t enhance yur knwledge and explre yur emtins. End f Life Cnversatins with Patients and Families - Part One Page 1
Purpse f this Dcument This dcument is the first in a series f fur and is intended t help health care prviders fster existing and develp new therapeutic relatinships with patients at the end f their life. The dcument was develped by health care prviders fr health care prviders and prvides examples f language and suggested dialgue that are meant t help yu t begin t frmulate yur respnse t inquiries. Resurces fr Self-Explratin A health care prvider s explratin f their persnal and prfessinal values is a key cmpnent t supprting the therapeutic relatinship. Our willingness t listen carefully, empathize with, and supprt ur patients is vitally imprtant t supprt infrmed decisin making. The resurces listed belw are designed t guide health care prviders thrugh an exercise t explre hw yu and thers feel abut prviding infrmatin abut assisted death and ther end f life ptins. It is imprtant t recgnize that AHS has a plicy in place t supprt individual chice, and that prtects prviders frm being pressured t participate against their cnscience. Ding this self-explratin wrk in advance will help t prepare yu t supprt the patient and family in a directin that meets their needs and still hnurs yur values. 1. Medical Assistance in Dying: Values-Based Self-Assessment Tl fr Health Care Prviders including Physicians and NPs) Link t tl: http://www.albertahealthservices.ca/assets/inf/hp/maid/if-hp-maid-self-assessment-tl.pdf. The purpse f this self-assessment tl is t: Supprt individuals t clarify r deepen their understanding f their wn ethical perspective n medical assistance in dying; Prvide individuals with a language with which they can better cnvey their perspective t thers; and Enable individuals t further understand ther perspectives. 2. Healing the Divide: A Health Care Prvider s Relatinal Apprach t Medical Assistance in Dying Discurse. Link t the dcument: http://www.albertahealthservices.ca/assets/inf/hp/maid/if-hp-maid-healing-the-divide.pdf. The purpse f the Healing the Divide dcument is t: Acknwledge hw the use f language culd impact team relatinships language culd prmte divisiveness r it culd bridge differences; and Fster intentinal use f nn-divisive language and hnring f diversity in MAID related discussins. This dcument is ptimally used in cnjunctin with the Values Self-Assessment tl. End f Life Cnversatins with Patients and Families - Part One Page 2
Hw is this Fur Part Series rganized? We acknwledge and trust that many health care prviders may already have a tested dialgue and language style. This fur part series has been develped t supprt patients, families and prviders t wrk tgether t explre end f life ptins as described belw: Part One: General explratin f end f life ptins. Part Tw: Suitability f requested ptins. Part Three: Infrmed decisin making. Part Fur: Mving frward with decisins. It is imprtant t recgnize that this dcument is nt intended t be a script fr health care prviders. It simply cntains shared experiences and examples f past dialgue and language used successfully by ur clleagues when engaging in cnversatins abut sensitive issues. One f the ways health care prviders learn is t share their experiences. We hpe that the infrmatin prvided belw will be helpful t yu as yu cnstruct a dialgue and language style that will wrk fr yu and the patients and families fr whm yu care. The dcument als includes cmmunicatin tips and suggestins abut supprtive language chices. End f Life Cnversatins with Patients and Families - Part One Page 3
Part One: General explratin f end f life ptins Mr. Brwn is a 59 year ld married, retired firefighter. He was admitted t yur unit tw days ag due t increasing shrtness f breath. Mr. Brwn is in the later stages f his illness and has been diagnsed as palliative but still has gd functinal status and enjys time with his family. He has 2 children (ages 19 and 23) and prir t admissin t yur medicine unit, he resided with his wife in their wn hme in a rural cmmunity. The patient is described as ld schl and has a scial histry f yelling and being demanding f his wife. He has maximum palliative hmecare and his wife is demnstrating behavirs cnsistent with caregiver burnut. They cannt affrd t hire private caregivers. James, a health care prfessinal, has been wrking n the medicine unit fr apprximately 6 years in his prfessinal capacity. James has heard sme rumblings abut medical assistance in dying in the news, but until tday had never really thught abut it. James is nt aware f the prcesses AHS has in place t manage inquiries frm patients regarding end f life care ptins, which nw includes medical assistance in dying. Tday, during James mrning interactins with the patient, Mr. Brwn twice made a shting gesture t his head and stated he might as well die. He denies any suicidal ideatin and depressin has nt been part f his histry, hwever he ntes that he cntemplated ging t Mntreal where physicians culd help me die (laughing) and then yu wuld be ut f a jb. James enters Mr. Brwn s rm t ffer him care. Mr. Brwn says t James that he des nt want the care James is ffering and states, I wish this was all ver with and I want t talk t my dctr abut ending it all. What shuld James say t Mr. Brwn nw? Cnsideratins Take time t explre the nature f the request and clarify the patient s intentin. Is there urgency arund the need t address the symptms that may be influencing the request? Cnsider what actin(s) shuld be taken and infrm the patient s MRHP (mst respnsible health practitiner) f the patient s cmments. Examples f Dialgue and Language prvided by Health Care Prfessinals A. Nn-participating prvider language I want t d everything I can t wrk with yu and prvide yu with the best care I can ffer. If yu are in agreement, I will be asking my clleagues t cntinue this discussin with yu n medical assistance in dying with as much cntinuity as we can prvide. B. Participating prvider language Yu ve mentined several times that yu are wishing it were all ver. End f Life Cnversatins with Patients and Families - Part One Page 4
We haven t talked abut this befre.please tell me mre Can yu tell me why yu wish yur life t end? Can yu tell me abut the things that frighten r cncern yu the mst right nw? Sme peple make this statement when they re feeling dwn; then when circumstances change they feel differently. What d yu think things might lk like tmrrw? D yu feel depressed r dwn? Culd this be part f the reasn fr the request? We shuld explre fully s that we can find ways t supprt yu and treat yur symptm. Sme peple feel they are a burden t thers as their cnditin wrsens and they require mre help frm family r friends. D yu ever feel this way? What d yu expect will happen withut medical assistance in dying? (Understanding and expectatins f the illness; expectatin f what dying will be like) Can yu share with me what yu re thinking in that regard? Wh else knws that yu have expressed this wish t end yur life? If I understand yu clearly, yu are interested in mre infrmatin abut accessing medical assistance in dying t end yur life in the near future. OR if I have this crrectly, yu are wanting mre infrmatin abut medical assistance in dying unless yur situatin imprves symptms r therwise? Thank yu fr being hnest with me abut yur desire t helping me t understand yur perspective abut yur wishes t die. It sunds like yu have thught abut this a lt. As this is the first discussin yu and I have had abut this tpic, I need sme time t cnsult with the team/cnsider yur ptins/reflect n where we g frm here, with yur cnsent. There are many ptins that wuld help respect yur dignity. End f Life Cnversatins with Patients and Families - Part One Page 5
Suggested Next Steps What shuld James d after talking t the patient? Enhance knwledge and explre emtins G t AHS webpage fr infrmatin, review regulatr advice and any applicable practice standards, seek prfessinal advice: www.ahs.ca/maid Infrm himself abut the legislatin and the AHS plicy Understand his rle as a health care prvider seek advice frm his prfessinal regulatr Explre persnal and prfessinal values: http://www.albertahealthservices.ca/assets/inf/hp/maid/if-hp-maid-self-assessment-tl.pdf Speak with an ethics staff member, a spiritual care staff member r his manager, trusted clleague Build awareness abut hw the use f language culd impact team relatinships: http://www.albertahealthservices.ca/assets/inf/hp/maid/if-hp-maidhealing-the-divide.pdf Wh n the cllabrative care team shuld James speak t? James shuld discuss the patient s cmments with the Charge Nurse and/r his manager/supervisr. It is imprtant that the patient s MRHP (mst respnsible health practitiner) is made aware f the patient s cmments It is als imprtant that palliative cares ptins are reviewed with patient and apprpriate referrals are made and that patients are aware f the cmplimentary rle f these services What linkages t services culd be meaningful t the patient at this time? Ensure the mst apprpriate members f the cllabrative care team are invlved in the patient s explratin Cnsider creating linkages t spiritual care and ethics services Cnsider creating r renewing linkages t palliative care services. Reviewing these ptins with patient and facilitating apprpriate referrals are crucial Cnsider facilitating linkages t the mst apprpriate member f the cllabrative care team t review the Advance Care Planning/ Gals f Care Designatin Plicy with the patient and family as apprpriate. (Previus Gals f Care shuld be reviewed and accmpanying dcumentatin shuld be added t the patient s health care recrd) What behaviurs are required? D nt make judgments - judgments made by health care practitiners may affect the therapeutic relatinship, limit chices and lead t premature decisins Be empathetic - remember that empathizing is nt the same thing as agreeing Listen carefully - attempt t understand the nature f the request (If the patient is seeking general infrmatin abut medical assistance in dying ffer dialgue and/r direct them t resurces. (www.ahs.ca/maid r Health Link 811) If yu are a nn-participating practitiner (i.e. yu d nt participate in medical assistance in dying activities due t reasns f cnscience r ther persnal reasns) use verbal and bdy language that is neutral in tne End f Life Cnversatins with Patients and Families - Part One Page 6
Additinal Cmmunicatin Cnsideratins If prviding mre fcused dialgue cnsider prceeding with: Ask pen-ended questins in a calm and nn-judgmental manner t elicit: Specific infrmatin abut the type f request being made The underlying causes fr the request Use silence apprpriately; d nt rush t fill gaps in the cnversatin Sit quietly thrugh patient (and family if present) tearful episdes End the discussin by letting the patient knw this is the first discussin f thers t fllw; ensure shared understanding f next steps Seek agreement t have nging discussins t check understanding and whether cncerns and expectatins have changed Dcument and advise ther team members participatin Encurage the patient t discuss their request with family members and ther imprtant peple in his/her life Infrm patient f the prcess fr alternative prviders t cntinue the prcess fr this discussin fr thse prviders wh are nn-participating In Cnclusin The tips in Part One f this series are intended t assist health care prfessinals t supprt patients and families in the general explratin f end f life ptins. If yu feel this is nt prviding yu with the skills needed, speak t yur manager, ask a clleague fr help, seek further readings n the tpic, etc. Please watch fr the release f the fllwing dcuments in the cming weeks: Part Tw: Suitability f requested ptins; Part Three: Infrmed decisin making; Part Fur: Mving frward with decisins. Feedback Yur nging feedback is imprtant t us s please feel free t ffer yur suggestins and share yur experiences as yu engage in end f life discussins. The mre we share and learn the better able we are t supprt thse we serve and each ther. MAID.CareTeam@ahs.ca End f Life Cnversatins with Patients and Families - Part One Page 7