george j. giokas, md director of palliative care, the community hospice palliative care consult...
TRANSCRIPT
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