Dilemmas in Communication at the End of Life

Transcription

1 Dilemmas in Communication at the End of Life Daniel Johnson, MD, FAAHPM Kaiser Permanente University of Colorado End-of-Life Communication Dilemmas 1. How do we start the endof-life conversation? 2. How do we talk about prognosis? 3. How do we reconcile conflicts with directives? 4. How do we manage unrealistic demands? 5. How do we discuss DNR in end-stage illness? Unfortunately, animals sometimes lack the necessary skills to communicate with each other Starting the Conversation: Meet Joe a 79 y/o retired executive w/ CAD, endstage CHF, growing frailty, depression Admit: CHF exacerbation, weakness 2 hospitalizations (4 mo) 2 0 CHF and PNA Last SNF stay: they told me I d get better Wife (caregiver) struggling to provide care at home, limited help from son No advance directives, full cor

2 When Our Words Fail Us Communication Dilemma #1 How do we start the endof-life conversation? Why have this conversation? Helpful words or phrases? What can we offer for support? End-of-Life Discussions Change Care Studies show EOL discussions associated with: NO increase in patient depression or worry Better patient and caregiver quality of life Ventilation, resuscitation, ICU admission; costs Earlier hospice admissions Less depression in bereaved caregivers More aggressive therapies associated with: NO difference in mortality Worse patient quality of life ( Hospice LOS = QOL) Wright AA et al. JAMA, Zhang B. et al. Arch Intern Med, 2009

3 Starting the Conversation: Tips Think advance the conversation It is easier to ask before you tell: LISTEN Learn what patient/family are ready to know Use simple terms and attend to emotion Don t discuss options before exploring goals Joe, I sense your frustration with the way things are going. Help me to understand how this illness is affecting you and your family. Offering Support: Palliative Care Palliate : to ease or relieve Comprehensive, concurrent support Reduces pain and symptom distress Provides practical and spiritual support PC supports transitions Aligns treatments w/ values/ preferences Decreases hospital and ICU LOS, costs Increases hospice utilization and LOS Hospice: one type of palliative care Palliative Care Hospice Centers to Advance Palliative Care ( PC: Quality AND Quantity of Life Randomized trial of 151 patients w/ lung CA Patients randomized to usual care vs. usual care PLUS early (integrated) palliative care Those with early palliative care had: Higher quality of life scores (p=0.03) Fewer depressive symptoms (16% vs. 38%, P=0.01) Less aggressive EOL care (33% vs. 54%, P = 0.05) Longer survival (11.6 months vs. 8.9 months, P = 0.02) Temel JS et al. NEJM, 2010

4 Palliative Care Services: Examples Hospital-based Palliative Care PC Consultation (~60% hospitals w/ > 50 beds) Palliative Care Unit Home- or Community-based Palliative Care Hospice bridging programs (at home, ALF, NH) Home-based palliative care (Kaisier Permanente) Advanced Illness Care Coordination (Tobin et al.) Clinic-based palliative care Hospice Care When to Consider a PC Referral Advanced illness: Would you be surprised if this patient died in the next year? Unmet needs (physical, emotional, spiritual, practical) Support around: complex decisions, conflict Words to introduce palliative care (example): Joe, I can see that this is difficult for you. I d like to help. We have a team in our hospital that can help me to provide you with the best support possible. May I ask them to meet with you and your family? Example: Words to Introduce Hospice Joe, it sounds like the trips to the hospital aren t helping you to feel well. I also hear your hopes to have better pain relief and more time at home with your grandkids. Would it be OK if I describe some of the services that I think might be very helpful to you and your family?

5 Back to Joe: The Family Meeting Patient: limited understanding of his illness unsure what to expect moving forward Acknowledges steady decline, losing my self Worried about bringing my family down Wife: overwhelmed, worried, wanting help Struggling with her own physical decline (RA) Growing financial concerns Son: struggling to accept his father s decline Feels guilty at lack of involvement Asks: Just how much time does he have? Communication Dilemma #2 How do we talk about prognosis? How do we formulate a prognosis? When should we share the information? Won t we destroy a person s hope?

6 Patterns of Functional Decline E H = ER/ Hospitalization Cancer Function H E CHF, COPD, CKD E E Dementia H H H H Time Increasing Severity of Disease Chronic, Progressive Illness Advanced Illness Using Prognostic Tools Many predictive tools available Supplement, but don t replace, clinical estimates General tools examples: Karnofsky, ECOG Palliative Performance Scale Disease specific tools examples: Seattle Heart Failure Model BODE Index (COPD) Sinclair CT et al. J Palliative Med, Yr Mortality after Hospitalization Predictor Points Male ADLs 2 5 ADLs 4 CHF 2 Cancer (local) 3 Cancer (mets) 8 Cr >3.0 2 Albumin Albumin <3.0 2 Walter LC et al. JAMA, 2001 Prognostic index from 1495 older patients discharged from a general medical service at a tertiary care hospital (mean age = 81 yrs, 67% female) Total Points Predicted 1-yr Mortality % % % >6 68%

7 Discussing Prognosis Studies show many, but NOT all, want info Patients/family have varied readiness and needs Requires careful titration of information BOTH patients and clinicians tend to overestimate prognosis: CHF patients overestimate by 30% (Allen LA et al. JAMA, 2008) MDs overestimate x 5 w/ hospice (Christakis, BMJ, 2000) Prognostic information changes preferences: Alters resuscitation preferences (Murphy DL et al. NEJM, 1994) Surrogate Preferences for Prognosis Interviews of 179 surrogates of ICU patients Most (87%) surrogates wanted MDs to discuss an uncertain prognosis. Reasons: Prognostic uncertainty is unavoidable MDs only source for prognostic info Sharing uncertainty leaves room for hope Increases surrogates trust in the physician Signals a need to prepare for possible bereavement Few (12%) thought prognosis should be avoided. (Reason: emotional distress if wrong ) Evans RL et al. Am J Respir Crit Care Med, 2009 Styles in Communicating Prognosis Cautious Recommendations: Discussing Prognosis Direct Curtis RJ et al. J Palliative Med, 2008

8 Back to Joe Patient does NOT want prognosis, but does allow team to talk with son Aligns with support for mood, breathlessness Patient shares skepticism re: another nursing home (SNF) stay: Just makes no sense. Joe and wife surprised to hear that hospice is not a place and supports persons with CHF Son adds home support, joins in hospice visit Patient alive 7 mo post-hospice admission When Advance Care Planning Fails: Meet the Nelsons the family of a 66 year old welder admitted with advanced lung CA, DVT and new PE S/P ED arrest: intubated, sedated, gravely ill Son upset: he s had leg pain for a week! Directives: Living Will states wish for 5 d of life support if terminally ill (and stop therapies if no better after 5 d); wife = MDPOA, no CPR dir. HD# 6: pt unresponsive, no better, wife wants further treatment: not what he meant. Communication Dilemma #3 How do we reconcile conflicts with directives? What if surrogate instruction conflicts with information from a living will? What is MOST and how might it help?

9 Directives: Helpful or Not (?) Directive Advantages Shortcomings Living Will MDPOA CPR Directive Patient s voice May family conflict Patient designated voice Encourages dialogue? May family conflict Clear yes or no designation re: resuscitation if death What is terminal illness Cannot anticipate or address all circumstances Surrogate s may not know loved one s wishes Risk for family resentment Risk for misinterpretation: Do not treat Need original document Directives Change Care Decisions Survey of 3746 proxies of decedent patients Nearly half (43%) required decision making: 70% lacked capacity, 68% (of those) had ADs Those with ADs (either living will or MDPOA): More likely to want limited care (93%) or comfort care (96.2%) vs. all care possible (1.9%) Less likely to receive all care possible (AOR, 0.3) Less likely to die in hospital (AOR=0.72) or receive all care possible (AOR=0.54) Silveira MJ et al. NEJM, 2010 When Directives Collide: Tips In Colorado, if no decision maker Proxy Law: instruct family to gather interested parties If family conflict: Make decisions w/ MDPOA/ selected proxy, BUT Meet to understand perspectives, provide emotional support, and seek common ground or consensus If MDPOA disagrees with Living Will (LW): First explore reasons/ rationale: grieving vs. other? If LW addresses the situation, LW trumps MDPOA Provide emotional support, consider time limited trial

10 Colorado Medical Orders for Scope of Treatment (MOST) Modeled on POLST (Physician Orders for Life Sustaining Treatments) in Oregon/ other states Who? Seriously ill patients w/ frequent transfers Colorado MOST form: summarizes patient preferences for life-sustaining treatments: CPR, general scope of treatment, antibiotics, and artificial nutrition/ hydration New legislation: a signed MOST form (by MD, DO, APN or PA) serves as a physician's order for EMS and/ or a health care provider/ facility Statewide education and implementation ongoing Back to the Nelsons Family meeting: son talks for 10 min shares anger; wife shares this is all moving too fast Team allows venting SW turns to daughter Daughter subdued, quiet: I m frustrated, too, John but I don t think dad would want this. After brief pause, wife starts crying, children provide support. Family request time alone and ask for life support to continue to AM. Team assures comfort, non-abandonment, document no escalation and NO COR. Do Everything : Meet Bill a 74 y/o man with end-stage pancreatic CA, sepsis, and multi-organ failure Intubated, sedated; BP support, antibiotics No directives; family unsure, but wife states Bill wants everything : he s a fighter. Day 5 remains comatose, hypotensive, ARDS Day 11 Agitated, pain, necrosis of digits Staff increasingly frustrated and distressed: futile care Family meeting: Medical team re-confirm family desires for resuscitation, tube feeds, and tracheostomy

11 Communication Dilemma #4 How do we manage unrealistic demands? What is everything? Must we offer it? Effective elements of a time-limited trial? Other strategies to prevent futile care? On Doing Everything : First Do No Harm Clinicians are not ethically obligated to deliver care that, in their best professional judgment, will not have a reasonable chance of benefiting their patients. Patients should not be given treatments simply because they demand them. Denial of treatment should be justified by reliance on openly stated ethical principles and acceptable standards of care. Am. Med. Assoc. Council on Ethical and Judicial Affairs, June, Doing Everything Quill T et al. Discussing Treatment Preferences with Patients Who Want Everything. Annals Intern Med, 2009

12 Words to Explore Everything Domain Cognitive Affective Spiritual Family Example Questions to Ask Tell me more about what you mean by everything. What is your understanding of your condition/prognosis? What worries you the most? What are you hoping for? Does your religion (faith) provide any guidance in these matters? How is your family handling this? Quill T et al. Annals Intern Med, 2009 Strategies for Limiting Therapies When Facing Unresolved Conflict Plant seeds: don t demand urgent decisions If deemed harmful: obligation to NOT provide Consider recommendations over coercion If unsure: use structured time limited trials Agree to reevaluate at a pre-defined future date Clarify what better or harm would look like Set expectations: therapy will be stopped if harm Seek support from palliative care, ethics Hospital futility policies, transfer of care Caution: Varied Preferences for MD Recommendations around Life Support Prospective, mixed methods study of 169 surrogate decision-makers for critically ill patients. Methods: videos of simulated MD surrogate discussions Results: 56 % preferred recommendation, 42% preferred no recommendation, 2% found either OK Themes that explained surrogates preferences: Surrogates perceptions of MDs appropriate role Consequences of a recommendation: MD surrogate relationship, decision-making process, long-term regret MDs should ask surrogates, be flexible in their approach White DB et al. Am J Respir Crit Care Med, 2009

13 Back to Bill Family meeting: ALL members together at once Interdisciplinary team: MD, SW, RN, chaplain Family confused, frustrated: we know nothing Maggie (sad): I should have called sooner Kim (angry): This is torture. Ben (pensive): This is not our decision. God will take him when it s his time. Kim disagrees. Patient values: FAMILY, home, dog, crafts Described as practical, AND hates conflict Discussing Resuscitation: Meet Roger A 81 y/o retired mailman with advanced CHF (EF 20%), CAD, DM and CKD (Cr = 3.0) Admitted w/ CHF exac., cardio-renal syndrome Three admissions in 6 m, recent SNF stay Accepts hospitalization: if that s what it takes. Growing weakness, mostly bed-bound Desires full resuscitation: Its saved my life once before I ain t ready to just give up. Why d ya keep asking don t y all ever talk? Communication Dilemma #5 How do we discuss DNR in end-stage illness? What % survive in-hospital arrests? What predicts successful resuscitation? Helpful words in DNR discussions?

14 Resuscitation Outcomes Public perception shaped by TV and film 1996 NEJM analysis of resuscitations on TV 2006 study of elderly: 81% believed >50% chance of surviving inpatient CPR and leaving the hospital CPR success rates w/ little change in 20 yrs About 15%, or 1 in 6 patients, who undergo CPR in the hospital will survive to discharge Prognostic info. influences CPR preferences Specific co-morbidities reduce survival Diem, et al. NEJM, Adams, et al. J Am Osteopath Assoc., Murphy D, et al. NEJM, Factors Predicting CPR Failure Factors which predict a failure to survive to discharge included: Sepsis the day prior to the CPR event Serum Cr >1.5 mg/dl Metastatic cancer Dementia Dependent status In a 2006 meta-analysis, 6-7% of all cancer patients survived CPR to discharge (less than 2% if a cancer patient in the ICU) Ebell et al. JGIM, Adams, et al. J Am Osteopath Assoc., Unrealistic CPR Requests Often arise from: Inaccurate information about CPR prognosis has been shown to change decisions Explore emotions: fears, guilt, distrust Management of persistent requests: Don t demand urgent decisions for DNR Plan full CPR at death, but continue discussion Rare: unilateral order and/or transfer care Support staff and practice self-care Weissman D. EPERC, Fast Fact # 24, 2000

15 Back to Roger Team asks what the pt-family understand about illness and (later) CPR: not much. Share goals: to be at home, wants treatment and OK with hospitalization for now. Learn of prior event: saved in ED 8 yrs ago post-mi, after single shock, no intubation Pt-family interested in hearing more re: CPR Patient/family realize illness now different Align w/ MD recommendations 1 day after discussion: continue treatment, but DNR/DNI A Lot to Digest! Questions and Comments