Getting What You Want in End of Life Care

Kenneth Brummel-Smith, M.D.Charlotte Edwards Maguire Professor and Chair,

Department of GeriatricsFlorida State University College of Medicine

Objectives

• Describe the problem of dying in America

• Describe common myths about end of life care

• Describe steps you can take to control your life – and dying process

Remaining Life ExpectancyWomen

Men

Walter LC, JAMA, 2001

Causes of Death (>65)

• Heart disease• Cancer• Stroke• Pneumonia• Diabetes

• Falls• Atherosclerosis• Kidney failure• COPD• Cirrhosis

Aging is personally modifiable!

Truisms

• Everybody’s going to die• Most people don’t want to deal with it• Doctors will always do something,

especially when they aren’t sure what to do

• The only way to get what you want is to plan for it

Common End of Life Medicine

• Hospitalization• No hospice referral• Lots of medications• Artificial nutrition (“Tube feeding”)• Intravenous tubes• CPR – cardiopulmonary resuscitation

Disease Trajectory Full

Function

Death50 80

Artificial Nutrition Myths

• Prolong life• Reduce suffering• Decrease aspiration• Ordinary care

Prolong Life?• 50%-68% 1 year mortality (Cowen, Callahan)

• dementia• stroke• CHF

• Survival same as hand fed (Mitchell)• Improvement in nutritional measures

does NOT affect survival! (Golden, Kaw, Mitchel)

Reduce Suffering?• Complication rate 32% - 70% (Taylor)• Those without hunger or thirst have

increased pain with ANH (McCann)• Increased use of restraints

• Up to 90% (Peck)• NOT significantly different with G tubes

(Ciocon)• 70% had no improvement in function or

subjective health status (Callahan)

Decrease Aspiration?• NG tube -

• 67% aspirated• 43% developed pneumonia• 66% pulled out

• G tube• 44% aspirated• 56% developed pneumonia• 56% pulled out

(Ciocon)

Ordinary Care?• Decreased human contact (Slovenka)• Supreme Court ruling in Nancy

Cruzan• Religious stands

• Catholic - burdens and benefits• Jewish - impediments to dying

Loaded Words• Starvation• Dying of thirst• Wasting away

Benefits of Dehydration

• Lack of thirst• Decreased phlegm production• Decreased urine production• Euphoria• Analgesia• Anaesthetic effect

CPR – How Successful?

• Television - ?• Majority – trauma• 65% children and young adults• 75% success rate• Rescue 911 - 56% used the term “miracle”

• Real life - ?

New England Journal of Medicine 334 (24): 1578–1582

CPR in Hospitals• 14% overall survival in hospitals• 3% on general medical wards• 80% of those with restored heart rate

are comatose• 50% of survivors do not want CPR

again• 50% of survivors develop major

depression or functional decline

“survival” – leave the hospital

CPR in NH

• 0%-3% survival rates in NH• 4% of facilities have “No CPR”

policies• 23% never initiate - call EMT

Definitions• Advance Directives

• Living Will• Durable Power of Attorney for Health Care• Surrogate decision maker• Mixed Advanced Directives

• 5 Wishes• Advance Care Plan Document – Project Grace

• Do Not Resuscitate Order-DNRO (“Yellow Form”)• POLST - an “actionable advance directive”

Benefits Of Advance Directives

• Discussions between family members• Clarifying preferences• Educating about risks and benefits of

different treatments• Dispelling myths• Ensuring desired or preventing

undesired treatments?

Limitations of Advance Directives

• Usually not available in clinical settings• Do not provide clear guidance to

emergency personnel• Only 17% - 25% of people have them• Variations in forms• Terms may be unclear to clinicians• Don’t work – SUPPORT study

Angela Fagerlin and Carl E. Schneider, “Enough: The Failure of the

Living Will,” Hastings Center Report 34, no. 2 (2004): 30-42.

Will Better Discussions Work?• SUPPORT Study:

• System-level innovation … may offer more powerful opportunities for improvement.

• Physician behavior is not altered significantly by addressing poor communication alone.

• The fundamental problem may be structural and institutional.

Lynn, J. Ineffectiveness of SUPPORT, JAGS, 48: 2000Murray TH, Improving EOL-Why So Difficult? Hastings Ctr Report, 2005

Why Advance Directives Are Not Followed

• Drs (or family) don’t see the patient as hopelessly ill

• Contents of the directive are vague• Family member is not available or

unable to make the decision• Family members disagree with the

person’s choice

Teno, J Gen Intern Med, 1998;13:439

Florida Case #1

• Madeline Neuman – 89 y/o Fl nursing home resident completed an AD

• Found unresponsive – resuscitated, intubated - 3 granddaughters persuaded Drs to cease treatment – she died after 1 week in Intensive Care Unit

• GDs successfully sued Joseph Morse Geriatric Center in West Palm Beach

Florida Case #2

• Hanford Pinnette – 73 y/o man in ORMC in Orlando with end-stage heart failure, kidney failure and on a ventilator

• Had executed an AD and named his wife as surrogate

• Drs recommended ending life-sustaining Tx in accordance with his living will

• Wife refused and said she could communicate with him

• Hospital went to court and won – LST was stopped and he died

FL Living Will - Myths

• Only way to limit interventions• Have to fit one of the 3 categories

• End stage disease, terminal condition, persistent vegetative state

• Must have 2 physicians “decide”• Have to be incapacitated

Better Option• Physician Orders for Life-Sustaining

Treatment

•“POLST” form

Purpose of POLST• To ensure that patient preferences are

followed• To provide a mechanism to

communicate patient preferences for end of life treatment across treatment settings• Home Hospital Nursing home

National Use of POLST

What is POLST?• A physician order• Can be completed by any provider but

must be signed by MD• Complements, but does not replace,

other advance directives• Voluntary use, but provides a

consistent, easily recognized document

Basis of POLST• Discussion regarding advance care

preferences• With patient • With surrogate decision maker (or proxy)

if patient does not have capacity to make decision• The POLST can be changed by the

surrogate, based on proper ethical principles

Percentage of Participants Who Received Less, Same, or More Care than Requested1.

4%

33%

14%

3% 3%

91%

46%

86% 84%

94%

6%

20%

13%

3%

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

CPR (N=54) Medical Intervention(N=54)

Antibiotics (N=28) IV Fluids (N=38) Feeding Tubes (N=34)

Areas of Care and Valid Reponses

Percent Less Than Requested Same as Requested More Than Requested

Amount of Care Received

1 Percentages exclude participants for whom care was not applicable.

Lee, Brummel-Smith, Meyer, Drew, London. J Am Geriatr Soc, 2000; 48:1219

Newest Study

• Compared NH residents with POLST to those without one

• 1711 residents• Three states – Oregon, West Virginia,

Wisconsin

Hickman SE, et al. J Amer Geriatrics Soc, 2010

Results – Orders in Chart

Hosp AB ANH CPR0

102030405060708090

100

POLSTNo POLST

%

Section A: Resuscitation

• Resuscitate• Do Not Resuscitate (DNR)

• Order only apply if a person is pulseless and not breathing

• Some have suggested changing this term to “AND” – Allow Natural Death

Section B – Three Levels• Comfort Measures Only

• Transfer to hospital only if comfort needs cannot be met

• Limited Additional Interventions• Do not use intubation or artificial ventilation, avoid

ICU• Full Treatment

• Use intubation & ventilation, cardioversion, pacemaker insertion, ICU

Sections C and D

• Antibiotics• No antibiotics• Evaluate whether limits exist• Use antibiotics

• IV and Artificial Nutrition• No nutrition by tube or IV fluids• Use for a defined trial period• Use long term

Section E

• Basis for Orders• Who was it discussed with?• A summary of the medical condition(s)• Signatures

Comfort Measures Always Provided!

• Each level of care starts with comfort• Each successive level includes the

previous level• Even those receiving “full treatment”

need comfort• SUPPORT study – majority of dying

patients had untreated, but controllable symptoms

Where to Keep the POLST

• The front of the chart if admitted• In a red envelop on the fridge (makes it hard

to read when in envelope)• Goes with resident (patient) on transfer to

another facility• Comes back with resident• Photocopies stay in medical chart (or EHR)

after discharge or in physician’s office

FL POLST Initiative

• Center for Innovative Collaboration of Medicine & Law• Marshall Kapp, J.D., MPH – Director • http://med.fsu.edu/medicinelaw/• Alyson Odom

Program Associate850-645-9473

• Donations appreciated!

References

• My Mother, Your Mother: Embracing "Slow Medicine," the Compassionate Approach to Caring for Your Aging Loved Ones• Dennis McCullough

• Sick to Death and Not Going to Take It Anymore • Joanne Lynn