Palliative Care Dilemmas Daniel Johnson, MD, FAAHPM Life Quality Institute Kaiser Permanente University of Colorado Five Palliative Care Dilemmas 1. Starting the Conversation 2. Understanding Palliative Care 3. When Advance Planning Fails 4. Managing Distressing Symptoms 5. Discussing Resuscitation Starting the Conversation: Meet Ann a 79 y/o musician with progressive COPD, CAD, anxiety, frailty, and AMS Admit: COPD exacerbation, FTT 3 hospitalizations (5 mo), prior intubation Recent stay at SNF: that place that stinks Lives with daughter-caregiver (and proxy), burden due to weakness, confusion Full cor, no ADs, daughter do everything
Palliative Care Dilemma #1 What are words or strategies to start the end-of-life conversation? 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, 2008. Zhang B. et al. Arch Intern Med, 2009 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 John, I sense your frustration with the way things are going. Help me to understand how this illness is affecting you and your family. Tell me what you understand about your illness.
On Doing Everything : First Do No Harm Physicians 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, 1994. Doing Everything Quill T et al. Discussing Treatment Preferences with Patients Who Want Everything. Annals Intern Med, 2009 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
Back to Ann: Patient: scared (breathing), tired, worried about burden: dragging Betsy down Daughter: tired, overwhelmed, and fraught with guilt (failed to keep mom home) Patient wants more time, treatment but only if comfortable and not draining family Recommendation: easy treatments (e.g., oral antibiotics), but no machines or CPR Patient and daughter align, pursue assisted living and information on hospice support Understanding Palliative Care: Meet Joseph a 63 y/o retired naval officer with pulmonary fibrosis, severe PHTN and growing dyspnea Admitted with hypoxia, possible CAP, progressive dyspnea, weakness, and fatigue Chart: Full Code, no documented goals; chaplain visits noted to be supportive (pt-wife) Case manager suggests palliative care consult; MD response: Why? We ll get him through this OK - and he s not ready for hospice anyway. Palliative Care Dilemma #2 What is palliative care and how is it related to hospice?
What (Some) Patients/Families Want Pain and symptom control To avoid inappropriate prolongation of dying To achieve a sense of control To relieve burden on family To strengthen relationships with loved ones Singer et al, JAMA 1999 90% of adults prefer to be cared for in their own home if terminally ill Palliative Care Palliate : to ease or relieve, affording relief without cure Palliative Care is patient and family centered care that optimizes quality of life by anticipating, preventing, and treating suffering. It addresses physical, social, emotional, intellectual and spiritual needs to facilitate patient autonomy, access to information, and choice. (CMS, 2008) Evolving Beyond the Either-Or Traditional Approach Curative Care Comfort Care Integrated Approach Curative or restorative goals Palliative support Palliative Care Hospice Care Hospice Medicare Hospice Benefit Life expectancy < 6 mo Waive curative treatments
Palliative Care: Quality, Affordable Care Provides comprehensive pt/family support Lessens pain and symptom distress Facilitates complex decision making Aligns treatments with pt/family goals Increases pt/family satisfaction Supports transitions Increases hospice utilization and LOS Decreases hospital and ICU LOS Reduces unwanted costs Centers to Advance Palliative Care (www.capc.org). Gade G et al. J Palliative Med, 2008. Casarett et al. JAGS, 2008. Non-Hospice Palliative Care Services Inpatient Palliative Care Consultation 53% hospitals (w/ > 50 beds) reported PC (AHA, 2006) Access, varied models Home- or Community-based Palliative Care Kaiser Home-based PC (based on RCT) Hospice bridging programs (at home, ALF, NH) Case management models, navigator support Advanced Illness Care Coordination (Kaiser, others) Clinic-based Palliative Care Considering an IPC Referral Advanced illness: Would you be surprised if this patient died in the next year or two? Unmet needs (physical, emotional, spiritual, practical) Support around: complex decisions, conflict Words to introduce palliative care (example): Betsy, I can see this is challenging for you and George. We have a team in our hospital that specializes in supporting people dealing with serious illness. Would it be OK if I ask them to meet with you and your family?
Back to Joseph PC MD reframes questions with hospitalist: do you think Joseph s family might benefit from some emotional and practical support? Pt-family share fears worry about falls, growing somnolence, and breathing spells Definitely does NOT want resuscitation, not sure about mechanical ventilation, want to meet with University to explore options Intermittent BiPAP, low dose hydrocodone Home-based PC started; support invaluable 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. Palliative Care Dilemma #3 Can an MDPOA (or proxy) override patient preferences previously documented on a Living Will? How should the medical team approach this challenging dilemma?
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 Dealing with Directives: 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 Back to the Nelsons Family meeting: son talks for 10 min shares anger; wife shares this is all moving so 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.
Managing Distressing Symptoms: Meet Glenn a 66 y/o trucker with stage IV esophageal CA, abdominal pain and severe N/V Admitted with intractable N/V, probable SBO related to tumor burden (abdomen/pelvis) Dramatic functional decline, PO over 3 wks Unsure re: exp. chemo, not surgical candidate PC team consulted to help clarify goals/plan At first meeting: patient unable to talk due to intractable retching, dry heaves; tearful Palliative Care Dilemma #4 What treatments are most effective for medical management of an inoperable bowel obstruction? Common Symptoms in Advanced Illness Breathlessness Constipation Anorexia Diarrhea Delirium Anxiety Fever Actualiz n Esteem Social Safety PHYSIOLOGICAL Nausea/Vomiting Pressure ulcer Depression Dry mouth Agitation Fatigue Cough
Malignant Bowel Obstruction Most common in advanced ovarian, colon CA Often inoperable: poor prognosis, function Drug therapy cornerstone for symptom relief: 1. Analgesia: morphine, hydromorphone, IV/SQ 2. Anti-nausea: anti-dopamine (haloperidol IV/SQ) and/or anticholineric +/- dexamethasone 3. Anti-secretory: scopolamine, gylcopyrrolate Octreotide for refractory distress 50 mcg q 8 hours SQ or 10 mcg/hr IV/SQ gtt RCT shows more effective than hyoscyamine Mercadante S et al. J Pain Sym Mng, 2007. EPERC, Fast Facts Targeted Approach to Nausea (Hallenbeck J, Weissman D, from EPERC Website, FF#5) Anatomical Pathway Chemoreceptor Trigger Zone Vestibular GI Cerebral Nausea Sources Toxins, drugs, cytokines Motion, vertigo Gut distention, irritation CNS pressure, anxiety Target Receptors D, S, others H, A A, S, others Unknown Primary Symptomatic Tx Haloperidol, Metoclopramide Meclizine, Diphenhydramine Scopolamine, Ondansetron Dexamethasone (?) Lorazepam A=Acetylcholine, H=Histamine, D=Dopamine, S=Serotonin Dalal et al. JPM, 2006. EPEC, 1999. Back to Glenn Scheduled haloperidol (1 mg Q6), dex (8 mg BID), hydromorphone ( 30%), gentle fluids Relief later that day, sleeps through night AM brighter: your that team that helped. Spoke w/ pt and wife re: goals both share desire for home, family, no experimental tx Transition haloperidol to metoclopramide patient tolerates small amounts of PO D/C to inpatient hospice facility; plan for home
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 mos, recent SNF stay Accepts hospitalization: if that s what it takes. Growing weakness, rarely out of bed at home Desires full resuscitation status: Its saved my life once before I ain t ready to just give up. Why d ya keep askin don t y all ever talk? Palliative Care Dilemma #5 Of patients who are resuscitated in the hospital, what percent survive to discharge? What words or strategies are helpful when discussing COR status? 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, 1996. Adams, et al. J Am Osteopath Assoc., 2006. Murphy D, et al. NEJM, 1994.
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 cancer patients survived CPR to discharge (less than 2% if a cancer patient in the ICU) Ebell et al. JGIM, 1998. Adams, et al. J Am Osteopath Assoc., 2006. Unrealistic CPR Requests Often arise from: Inaccurate information about CPR prognosis has been shown to change decisions Emotions: fears, guilt, distrust Management of persistent requests: Plan full CPR at death, but continue discussion and emotional support: time often helps Unilateral order and/or transfer care Support staff and practice self-care Weissman D. EPERC, Fast Fact # 24, 2000 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 doesn t want to discuss prognosis ( grim ), but gives permission for MDs to talk w/ son Pt-family interested in hearing CPR limitations Align w/ MD recs: treatment, but DNR/DNI
A Child s Prayer