Choosing Wisely in Advanced Illness Michael Galindo, MD, FACP Medical Director, Intermountain Healthcare Palliative Care System

CASE 77-year-old man with multiple myeloma and bone pain Comorbidities of obesity, OSA, DM2, and CAD Karnofsky score 70%: age, weight, and pain Married, wife 75 and very healthy College graduate/retired engineer Enjoys fishing, family gatherings, tinkering 2 local children, 2 live in another state

Scope of the problem 25% of Medicare spending is in the last year of life $130 billion (1992) → $536 billion (2012) Average out-of-pocket last 5 years: $38,700 1 Top decile of couples spent $98, % spent all their remaining assets 2 Almost half of those were survived by spouse 2 You better make it good… 1) Riley GF et al, Health Serv Res ) Kelley AS et al, JGIM 2013

Fixes The answer cannot be, “just throw more money at people in the last year of their lives” History of Attempts to Choose Wisely – Doctor Knows Best/ Straight Fee-for-Service – Managed Care – Utilization Review / Prior Auth – Pay for Performance – ACOs / Bundled Payment

Survival Outcomes in the Intention-to- Treat Population Palumbo A et al. N Engl J Med 2012;366: Case: Continued Lethargy, VTE Myelosuppression 2ary malignancy $163,000 /year

Overview What is Advanced Illness? Choosing Wisely, Ch(using) Poorly The Big Game of Plinko A Beautiful Treatment Course Targeting the Therapeutic Window Gentle, Measured, Soulful Care Trials of Therapy 5 Things What Else?

Three Basic Themes: “Evidence-based medicine is one of our best tools for getting out of this fix.” “Time is the crucial 4 th Dimension of Medicine” “Our patients need, want, and trust us to have hard talks about the future.”

Evidence-based medicine is one of our best tools for getting out of this fix “It could be anything…” ↓ Differential Diagnosis “No one knows what the future holds…” ↓ Differential Prognosis

Time is the crucial 4 th Dimension of Medicine Care is increasingly fragmented across time Different: – Sites – Providers – Incentives Care needs to consider and synthesize what has happened and what may happen The patient & family are the unifier over time

Our patients need, want, and trust us to talk about the future Medical decision making makes little sense without prognostication Communication is a lynchpin of satisfaction More communication can increase hope Preferences for communication should be elicited and individualized Temel J et al, NEJM 2010 Schaefer KG, Block SD. Curr Opin Crit Care 2009 Innes S, Payne S. Palliat Med 2009

What is Advanced Illness? The Common Terminal Pathway Decreased efficacy of specific treatment “A confluence of needs” “Advanced Illness occurs when one or more conditions become serious enough that general health and functioning decline, and treatments begin to lose their impact. This is a process that continues to the end of life.” * * Coalition to Transform Advanced Care

Ch(using) Poorly Overuse: – “The use of an intervention even when the benefits don't justify the potential harm or cost.” Underuse: – “The failure to provide a medical intervention when it is likely to benefit patient.” Misuse: – “When a patient doesn’t fully benefit from a treatment because of a preventable problem, or when a patient is harmed by a treatment.”

Struggling to Guide Choices Poor data on: – Prognosis – Efficacy of treatments – Comparison to alternatives or no treatment Perverse Quality Measures – HbA1c, BP control in frail patients – Cancer screening programs without end – Rigid nursing home protocols – Lack of appropriate measures for the end of life

The Curse of Kaplan and Meier

The Big Game of Plinko BadGood

The Big Game of Plinko BadGood

The Big Game of Plinko BadGood

A Narrowing Cone of Uncertainty For a given patient, the degree of prognostic certainty always increases as time passes – Fewer degrees of freedom – Less time to change – Established patterns become clear The differential prognosis narrows over time The range of options for care that may work also narrows

A Beautiful Treatment Course Aristotle’s “Unity” – A Beginning, Middle, and End – The Beginning: arises on its own, anticipates the End – The Middle: develops the main themes – The End: gathers up the loose ends and attempts to resolve the conflicts Modern medicine: badly-composed sitcom While not the authors of our patients’ stories, perhaps we can be a trusted editor… Aristotle, Poetics

Targeting the Therapeutic Window Not just giving enough to have a benefit, need to also avoid toxicity Window doesn’t just have an upper and lower bound – it also has a left and a right Time Dose

Gentleness High threshold of toxicity relative to benefit Time Dose More Gentle Less Gentle

Measured Care Being measured is knowing where you are in the course of illness Time

Soulfulness Dignity Loving Attentiveness Reflection Peace Joy Listening Home Patience Faith

Trials of Therapy Time-limited, goal-oriented, as intense as is reasonable Tell them beforehand what happens if things go well or badly What happens when a trial fails? – More gentle – More measured – More soulful

Time Intensity Full-Spectrum Tx Advance Care PlanningTurn off AICD No More Hospitalizations No More ICU No Advanced Tx Engage Surrogates Intensive Sx Mgmt Hospice Team Life Closure/ Bereavement CHF Course

The Basics & The Final Common Pathway Comfort Dignity Honesty & Engagement Best Efforts Respect for Choices “As time marches forward, options decrease and patients’ needs become more similar. What is the core that remains? = Hospice

CASE An 89-year-old woman with dementia, admitted with PNA Abrupt functional decline of last 2 months Treated with standard care but has trouble weaning from oxygen, ongoing aspiration Speech path recommends feeding tube Family desires a focus on comfort, home care with hospice

Costs in the Last Week of Life Zhang et al, Arch Int Med 2009

Case Continued 8 weeks later… – No trial of feeding tube → pureed → soft diet – Finished hospital course of antibiotics – Home oxygen – Hospice team marshals family together Walking the dog, eating regular diet Rate controlled on metoprolol, doing word searches Thinking about getting back on Coumadin…

“5 Things” in Advanced Illness 1.DO think about your patient’s future: hope for the best and prepare for the worst 2.DO engage the people who may eventually have to make the tough decisions 3.DO call tragedy by its name – don’t try to fix or ignore it 4.DO encourage treatments that are more gentle, measured, and soulful as illness advances 5.DO consider how care will be provided as illness progresses

1) Consider the Future Assess what the patient already knows Ask how much they and others want to know Make predictions about what to expect: – Best case – Worst case – Most likely – Discuss scenarios of likely pathways Share with them in hoping for the best, and preparing for the worst

2) Engage the People Who Matter Surrogates commonly make the big calls Correlation between real preferences and surrogates’ beliefs is poor Spontaneous conversations are rare – Awkward, never seems like the right time – Ill-informed, usually overlooks important factors Have a deliberate conversation that involves the surrogates Documentation is key

3) Call Tragedy by its Name (Most) people want to know the truth It’s not your fault that they’re sick Patients understand you’re not omnipotent Not being direct can perpetuate illusions Attend to your own feelings of failure

Managing Failure Physicians’ feelings of failure Emotional distress → Cognitive blocking Hard to break out of the toolkit you’re used to Collegial support: – “Blessing of a second opinion” – Interdisciplinary team “If you really want to create a catastrophe, you should fail to plan for your failures.”

4) Encourage the Gentler, More Measured, More Soulful Path First, do no harm – we just don’t know how many treatments work in patients with advanced illness Over-medicalization can crowd out the human needs of the dying Hospice patients often live longer and better

5) Consider the “How” of Care Who will care for the patient? What are the limitations and supports of those caregivers? How will housing and care be paid for? What special needs are in play? What if the plan falls apart?

Models for Care Advanced Illness Management (AIM-Sutter) Compassionate Care (Aetna) Home-Based Primary Care (Veterans Affairs) Palliative Care Systems (Ascension Health) Respecting Choices (Gundersen Lutheran) Palliative Screening Tool (Inova Health System) Transitions (Sharp Healthcare) Rural Palliative Care Network (Fletcher Allen)

Revolutions in Gentleness, Measuredness, and Soulfulness Gentleness: – Emphasis on less and less invasiveness – Chemo that makes you feel better (ruxolitinib) 1 – Less toxicity rather than more efficacy 2, 3 Measuredness: – Guidelines on when to stop screenings 4, 5 – Establishment of the ethics of opting out Soulfulness: – Data on the impact of the psychosocial on survival 6 1. Harrison et al, Br J Haem Motzer, NEJM Agnelli, NEJM USPTF ASCO, ACOG, USPTF Temel, NEJM 2010

Choosing Wisely - Summary 1)Consider the Future 2)Engage the People Who Matter 3)Call Tragedy by its Name 4)Encourage the Gentler Path 5)Consider the How Engage in the coordinated treatment pathways being developed for Advanced Illness

Advanced Illness and the PCMH Time is the critical 4 th Dimension of medicine Only a team invested in continuity can keep track of the goals and timelines Interdisciplinary primary care teams can be a patient’s “trusted editor” in writing the story of their illness Report of Geri-HPM Work Group, JAGS March 2012