DOES ANYBODY REALLY KNOW WHAT TIME IT IS?

EFFECTIVE GOALS OF CARE DISCUSSIONS

MOHAWK VALLEY HEALTH SYSTEMCAMPAIGN FOR QUALITY 2015

George J. Giokas, MD

Director of Palliative Care, The Community HospicePalliative Care Consult Service, Ellis Medicine

Learning Objectives

Distinguish hospice, palliative, and comfort care

Identify trajectories of life limiting illness

Understand the elements of effective goals of care discussionsThe speaker has no relevant financial disclosures

Palliative Care

“Palliative care means patient and family centered care that optimizes

quality of life by anticipating, preventing, and treating suffering.

Palliative care throughout the continuum of illness involves

addressing physical, intellectual, emotional, social and spiritual needs

and to facilitate patient autonomy, access to information and choice.”

Centers for Medicare and Medicaid Services

Frank 65 y.o. Heart Disease, Diabetes, Neuropathy, Vascular Disease

MI and CABG 10 years ago CHF (Heart Failure) Implanted Cardiac Defibrillator

(ICD) Living at home – married, family

in area Not working last 5 years Independent, driving, but activity

limited

Syncope from cardiac arrhythmia … …ICD discharged … hospitalized

Last hospitalization 1 year ago ..for extremity vascular issue

Medicines titrated Cardiologist requested

palliative care consult

Lunney, Lynn, & Hogan as cited You, CMAJ 2014

Initial meeting with Frank

“Sometimes too much fluid / sometimes not enough”

The ICD shock was frightening Breathing , numbness, fatigue, constipation Appreciates family support Trusts his cardiologist Hoping for more time with his family Making funeral arrangements… just in case

What Do Patients with Serious Illness Want?

To get good medical care Relief from physical sufferingTo not be a burden on their familyTo be with familyTo have their affairs in orderTo be at peace

D. Rosielle & L. Marr 17th ICPP Montreal 2008

Frequency of Symptoms in Advanced Illness Kelley & Morrison, NEJM 2015

Family Meeting

Family knows he’s doing worse Cost of medications Shared goals, concerns Won’t be able to drive for 6

months Uncertainty … could be months

to years, or could die suddenly

“Hope for the best, be prepared for the worst”

HC Proxy

MOLST … attempt CPR, trial of intubation, rehospitalize, but no feeding tube

Keep ICD on

Cardiologist … will revisit this plan depending on his condition and goals

Symptom ManagementPsychoSocial, Spiritual Assessment

Patient-centered realistic goals of careCommunication – Family Meetings

Coordination of careSetting of care consistent w/ goals

Advance care planning & documentation

Family - Staff Support

PALLIATIVE CARE FOCUS & SKILL SET

“End of life is just a slice of palliative

care”Russell Portenoy, MD

Newly dx’d metastatic NSC lung cancer MGH

Standard Rx vs. Standard Rx + palliative care

Intervention groupbetter QOL & lower rates of depression less chemotherapy 2.7 month survival benefitTemel, et al NEJM Aug. 2010

A Standard of Care“ …palliative and end-of-life care of the patient with an acute devastating or chronically progressive pulmonary or cardiac disease and his/her family should be an integral part of cardiopulmonary medicine” ACCP 2005

American College of Chest Physicians American College of Cardiology /AHA American Society of Clinical Oncology

American Academy of Neurology American Hospital Association

Institute of MedicineWorld Health Organization

NYS Palliative Care Information and Access Acts

Palliative Care Continuum

Hospital Based

Palliative Care

Hospice

Point of Crisis End of Life

OfficeHome

Long Term Care

Bridging the Gap

Community Based Palliative Care

Adapted from Diane Meier, MDCAPC Seminar 2014

Palliative Care Hospice Comfort-Only Care

GoalsLife

prolongation& comfort

Remaining time in

comfort; accept some

rx's

Comfortable death

Prognosis months-years

weeks-months

hours –days

Resuscita-tion Status Any

Usually DNR/DNI DNR/DNI

“Primary” Palliative Care

A skill set for ALL

medical/nursing professionals

Lunney, Lynn, & Hogan as cited You, CMAJ 2014

Lunney, Lynn, & Hogan as cited You, CMAJ 2014

Lunney, Lynn, & Hogan as cited You, CMAJ 2014

Lunney, Lynn, & Hogan as cited You, CMAJ 2014

Lunney, Lynn, & Hogan as cited You, CMAJ 2014

Cancer Organ Failure Frailty

Becoming Ill

Usually a sudden,

memorable event

Often no clear event

Often no clear event

Living with

Advanced Illness

Busy with Rx

Hope for cure while

fear of relapse

Symptoms suggest disease

Lack of understanding of

illness

Trying to live normally with limitations Symptoms

rarely assoc with diagnoses

Coping while trying to

maintain identity

Fear of being

ignored

More concerned about dementia or nursing home

than dying

DyingFocus on

good deathFocus on keeping

going

Death will happen in due

course

Kendall, et al JPSM Aug 2015800 interviews patients, family, clinicians

1% of adult population dies each year

For a “typical” primary care provider (UK)

2000 patients …. 20 deaths / year5 cancer trajectory6 organ system trajectory7 physical / cognitive frailty2 other

Murray and Sheik BMJ 2008; 336. 958-959

We have an obligation not to make diseases “surprises” G. Davis, MD

Accurate prognosis needed for care planning

The need to say “goodbye”

Impact on family caregivers

Slide courtesy of Dr P. Bomba

40% of COPD pts in ICU w/in 1 month of death

22% of dementia patients in ICU

w/in 1 month of death

40% of patients referred to Hospice w/in 3 days of death had ICU stay that preceded referral

Teno JAMA 2013

20% of all deaths in the US occur in the ICU

or shortly after an ICU stay Angus CritCareMed 2004

ICU Use During Terminal Hospitalization Medicare Patients 2010

Would you be surprised if the patient died in the next year?

• Decreasing functional status• Co-morbidities• Repeated unplanned admissions• Sentinel event –fall with major injury,

transfer to NH• Weight loss >10% last 6 months

Cancer - rapid, predictable decline

Organ specific failure – erratic declineCOPDCHFCKD

Dementia, Frailty – gradual decline

Goals of Care Discussions

1. Establish the setting.

What is the patient’s agenda?Information preferences; family or friends present

2. What does the patient understand? What do you understand about your current health

situation? What have the doctors told you about your condition?

Give information in small chunks – let the patient set the pace

Ask – Tell - Ask VonGunten,Weissman FastFacts

3. The Future Atu Gwande “Being Mortal”

What are you hoping for?

What are your concerns?

If (when) your current condition worsens,

what are your goals?

Are there any tradeoffs you are willing to make or not?

What would a good day be like?

4. Respond to strong emotions with empathic responses NURSE

Name “many people would be …”

Understand “it must be hard going thru this”

Respect “I’m so impressed by your commitment to your mother”

Support “We’ll be with you through this”

Explore “Tell me more”VitalTalk.org

Slide of David Weissman , MD Complex Goals of Care Discussion 2014

Slide of David Weissman , MD Complex Goals of Care Discussion 2014

5. Suggest realistic goals

6. Discuss resuscitation status if appropriate

Make a recommendationUse the phrase “attempt resuscitation “

Never say “Do you want us to do everything?”

CPR Survival RatesOut Of Hospital: Bystander 40% No Bystander 9%In Hospital 24%Frail Elder / ICU with MOSF/ Metastatic Cancer < 5 %

TV/Movies 66 % VonGunten, Weissman FastFactsBomba MOLST Training

When you’re stuck……

“I wish…”

“I hear .. but I’m concerned”

“Let’s hope for the best, but be prepared ”

Enough

7. Establish a written plan for dyspnea, pain, transfer out of residence

8. Document on MOLST Communicate to HC Agent, family, other treating physicians

Vital Talk Quick Guide Transitions / Goals of Care REMAP

What matters? AD reliably Develop goals

In our own lives

Respecting the individual and culture

Your Advance Directive ?

Not on my to do list

Thinking about it

Completed

Revised

if no Advance Directive… NYS Family HealthCare Decisions Act

1. Court-appointed guardian2. Spouse (if not legally separated) or

domestic partner3. Son or daughter 18 or older4. Parent5. Adult sibling6. Close friend

Your Decision Maker

Knows what matters to you?

Thinks clearly in emotional situations?

Will separate their preferences from yours if in conflict ?

NOT a Health Care Agent

Durable Power of Attorney

Authorized for Disclosure of Protected Health Information (HIPAA)

“Emergency Contact”Dialysis Centers 94 pts – only 3 had Surrogate Decsion-maker.After selecting SDM, 1/3 were not the Emergency Contact JPM 2013

Emergency Department 308 pts 10% had AD (only ½ had given to their PCP)95 % expected their emergency contact should be able to tell the medical team what their wishes were if they could not. Int PalCare Conf Montreal 2014

Kelley A and RS Morrison. Palliative Care for the Seriously Ill. NEJM. 2015; 373: 747-755.

Fast Facts #223-227 Goals of Care Discussions https://www.capc.org/fast-facts/

You J et al. Just Ask: Discussing Goals of Care with Patients in Hospital with Serious Illness. CMAJ. 2014; 186: e679-687.

Vital Talk Communication Quick Guides http://www.vitaltalk.org/quick-guides

Kendall, M et al. Different Experiences and Goals in Different Advanced Diseases: Comparing Serial Interviews with Patients with Cancer, Organ Failure, or Frailty and Their Families and Professional Carers. JPSM. 2015; 50: 216-223

Get Palliative care https://getpalliativecare.org