Palliative CareDilemmas

Daniel Johnson, MD, FAAHPMLife 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

• 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”

…a 79 y/o musician with progressiveCOPD, CAD, anxiety, frailty, and AMS

Palliative Care

Dilemma #1

What are words or strategies

to start the “end-of-life”

conversation?

End-of-Life Discussions Change Care

Wright AA et al. JAMA, 2008. Zhang B. et al. Arch Intern Med, 2009

• 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)

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 waythings are going. Help me to understand howthis 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 todeliver care that, in their best professional

judgment, will not have a reasonable chanceof benefiting their patients. Patients should not

be given treatments simply because theydemand them. Denial of treatment should bejustified 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 PatientsWho Want Everything. Annals Intern Med, 2009

Words to Explore “Everything”

“How is your family handling this?”Family

“Does your religion (faith) provideany guidance in these matters?”Spiritual

“What worries you the most?”“What are you hoping for?”Affective

“Tell me more about what youmean by ’everything.’”

“What is your understanding ofyour condition/prognosis?”

Cognitive

Example Questions to AskDomain

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 fraughtwith guilt (failed to keep mom home)

• Patient wants more time, treatment – butonly if comfortable and not draining family

• Recommendation: “easy” treatments (e.g.,oral antibiotics), but no “machines” or CPR

• Patient and daughter align, pursue assistedliving and information on hospice support

Understanding PalliativeCare: Meet Joseph

• 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 thisOK - and he’s not ready for hospice anyway.”

…a 63 y/o retired naval officer with pulmonaryfibrosis, severe PHTN and growing dyspnea

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 onesSinger et al, JAMA 1999

90% of adults prefer to be cared for intheir own home if terminally ill

Palliative Care

Palliative Care is patient and familycentered care that optimizes quality

of life by anticipating, preventing, andtreating suffering. It addresses

physical, social, emotional,intellectual and spiritual needs to

facilitate patient autonomy, access toinformation, and choice. (CMS, 2008)

“Palliate”: to ease or relieve,affording relief without cure

Evolving Beyond the “Either-Or”

Curative or restorative goalsPalliativesupport

“Curative” Care“Comfort”

CareTraditionalApproach

IntegratedApproach

Hospice

Medicare Hospice Benefit

• Life expectancy < 6 mo

• Waive “curative” treatments

Hospice Care

Palliative Care

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 Get al. J Palliative Med, 2008. Casarett et al. JAGS, 2008.

Non-Hospice PalliativeCare 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 thispatient 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 itbe 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 benefitfrom some emotional and practical support?”

• Pt-family share fears – worry about falls,growing somnolence, and “breathing spells”

• Definitely does NOT want resuscitation, notsure about mechanical ventilation, want tomeet with University to “explore options”

• Intermittent BiPAP, low dose hydrocodone

• Home-based PC started; support “invaluable”

When Advance Care PlanningFails: Meet the Nelsons…

• 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 lifesupport if terminally ill (and stop therapies if nobetter after 5 d); wife = MDPOA, no CPR dir.

• HD# 6: pt unresponsive, no better, wife wantsfurther treatment: “not what he meant.”

…the family of a 66 year old welder admittedwith advanced lung CA, DVT and new PE

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 (?)

Risk for misinterpretation:“Do not treat”

Need original document

Clear yes or nodesignation re:

resuscitation if death

CPRDirective

Surrogate’s may not knowloved one’s wishes

Risk for family resentment

Patient designated voice

Encourages dialogue?

May ↓ family conflictMDPOA

What is “terminal illness”

Cannot anticipate oraddress all circumstances

Patient’s voiceMay ↓ family conflictLiving Will

ShortcomingsAdvantagesDirective

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 emotionalsupport, 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, childrenprovide 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 DistressingSymptoms: Meet Glenn

• Admitted with intractable N/V, probable SBOrelated 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 tointractable retching, dry heaves; tearful

…a 66 y/o trucker with stage IV esophagealCA, abdominal pain and severe N/V

Palliative Care

Dilemma #4

What treatments are most effective

for medical management of an

inoperable bowel obstruction?

Common Symptoms inAdvanced Illness

• Breathlessness

• Constipation

• Anorexia

• Diarrhea

• Delirium

• Anxiety

• Fever

• Nausea/Vomiting

• Pressure ulcer

• Depression

• Dry mouth

• Agitation

• Fatigue

• Cough

Actualiz’n

SafetySocial

Esteem

PHYSIOLOGICAL

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)

A=Acetylcholine, H=Histamine, D=Dopamine, S=Serotonin

Dexamethasone

(?) Lorazepam

UnknownCNS pressure,anxiety

Cerebral

Scopolamine,Ondansetron

A, S,others

Gut distention,irritation

GI

Meclizine,Diphenhydramine

H, AMotion, vertigoVestibular

Haloperidol,Metoclopramide

D, S,others

Toxins, drugs,cytokines

ChemoreceptorTrigger Zone

PrimarySymptomatic Tx

TargetReceptors

NauseaSources

AnatomicalPathway

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 sharedesire 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

• 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 mylife once before… I ain’t ready to just give up.

• Why d’ya keep askin’…don’t y’all ever talk?”

A 81 y/o retired mailman with advancedCHF (EF 20%), CAD, DM and CKD (Cr = 3.0)

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% chanceof surviving inpatient CPR and leaving the hospital

• CPR success rates w/ little change in 20 yrs

• About 15%, or 1 in 6 patients, who undergoCPR 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 cancerpatients 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 agopost-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