Giving and Receiving Bad News

Lessons I learn

Rhonda Fishel MD, MBA, FACS

February 2009

Rhonda Fishel, MD has no relevant financial relationships with commercial interest and will not be discussing non-FDA approved uses of any drugs.

• Identify societal beliefs and clinical experiences that influence the health care provider’s ability to formulate, translate and appropriately convey bad news.

• Discuss the emotional and physical toll on the healthcare provider due to living in the midst of disease, death and dying?

• Recognize how serious illness of a health care provider can lead to a re-evaluation of life choices and priorities.

Helping patients and families hear, learn, and begin to accept bad news is the responsibility of everyone on the health care team.

It’s one of the most difficult and painful tasks we have and one of the most important, yet in spite of experience, there is always room for improvement.

• communicate in small sound bites

• have a winner or loser mentality

• are bombarded with shows about miracles

• believe the last rite is CPR

What Can Get in the Way

The Society in which We Live

As Americans We...

What Can Get in the Way

•  Personality issues •  Training and indoctrination •  Time constraints •  Fatigue •  Fear of failure if your patient

dies

All impair our ability to give bad news well

As Health Care Providers we struggle with...

Everyday, healthcare workers see and discuss terrible

things as casually as we pass the salt and

pepper shakers.

Our emotional well being requires

us to have varying

degrees of emotional

import.

Patients and families focus on what they can control because they cannot bear to

face what is out of their control.

Johns Hopkins 1977

•  Teenager with anemia, thrombocytopenia, leucocytosis

•  “Fascinating” bone marrow aspirate- acute leukemia

•  Diagnosis given without translator

•  Course of action not explained

The Epiphany

Surgical Internship- 1979 •  What’s wrong

with being on call every other night?

•  Average 100-130 hours a week

•  Were we made of the right stuff?

Call me if you need me, need me if you call me and remember it is a sign of weakness

Internship

The Line

We all have had “our Line”

•  Efficiency at a premium

•  Paranoia not uncommon with sleep deprivation

•  Trying to remember where the idealism went

•  Care and compassion

Balance

Confidence in one’s skills

Confidence in one’s knowledge

Belief in what we say

Sometimes right

Sometimes wrong

but, NEVER in doubt.

What is the difference between God and a doctor?

God does not think that he is a doctor

Bad News is

Sometimes Delivered

in a FLASH

Giving Bad News: Sudden Death

•  Envision yourself receiving this news

•  Go in with another member of the team

•  Everyone sitting •  Do not beat around the bush,

use “dead” or “died” •  Allow time for questions •  Consider leaving team member

to ask further questions

End of Life Issues •  Establish and nurture a rapport with

family •  Assess level of religious / spiritual

feelings •  Beware of giving statistics •  Hanging crepe •  The patient has trusted that the family

speaks for him •  Prolonging death rather than life- a

virtual line

Watch Out for Predictions

“Cure sometimes, relieve often, comfort always”

Dr. Edward Livingstone Trudeau!

…The Vigil

Empathy is your pain in my heart Luccock

Giving a Bad Diagnosis •  If other data suggests a bad diagnosis, hang

crepe before biopsy •  Do not beat around the bush •  Give hope- you can be their strength •  Stop and wait for them to absorb your

information •  Broadly outline the next step, do not do details

that day •  Arrange for another appointment in 2-3 days

with family / significant others

Tell all the Truth but tell it slant- Success in circuit lies Too bright for our Infirm Delight The Truth’s superb surprise As Lightning to the Children eased With explanation kind The Truth must dazzle gradually Or every man be blind

Emily Dickinson

SERVICE Rachel Remen, “My Grandfather’s Blessing”

Providing help is not necessarily service. Help shows our strength which may diminish those we aid.

We serve with everything that we are and everything that we know

Our weaknesses may be of service. Take it personally, let lives that touch yours, touch you.

Service is not a relationship between an expert and a problem. It is two people bringing their full resources to the table and sharing them.

SPIKES Protocol •  S -Setting and listening skills •  P - Patient’s perception of condition and seriousness •  I- Invitation from patient to give information •  K- Knowledge- giving medical facts •  E- Explore emotions and empathize •  S- Strategy and Summary

Bailes and Buckman

Doctor Speaks:

Your father has a pleural effusion and we’ll probably need to perform a thoracentesis. His ejection fraction has deteriorated and we may need to float a pulmonary artery occlusion catheter. His BUN and Creatinine have increased and we are worried that he is becoming coagulapathic. This clinical picture may represent SIRS or sepsis or this could be adrenal insufficiency. Further laboratory analysis is needed. A cortisol stimulation is pending.

TAKE 1

What the Family Hears...

NOT MUCH

Doctor:

Your father has fluid on his lung and we may need to drain the fluid. We do this at the bedside and he will be given medication so it doesn’t hurt. His heart is not as pumping as strong as it should and we may need to put in a special IV so we can follow this closely. His kidneys are also a little worse but we think we can fix it. His blood does not clot right. If you put this all together it may be that he is fighting a bad infection that makes his whole body sick. Sometimes all of this happens because a little gland above the kidneys is not working right. We are going to do some tests to figure this out.

TAKE 2

It is far better to sound intelligible than intelligent.

Avoid IDB: Inadvertent Disempowering Behavior

When the bad news hits home

Age 45- Breast Cancer

Clinical Features

•  4.7 cm invasive lobular carcinoma

•  Disease- both sides •  4 positive lymph nodes •  Ovarian micro

metastasis

•  6 months of chemotherapy

•  Post mastectomy radiation

•  Anti-estrogen

Disease Treatment

Cancer takes a Holiday...

Fall of 2005

•  Turned 50-vegetarian,no ETOH, cigarettes, gym rat

•  Loss of energy, pain •  Surgery, critical care,

administration, teach •  MBA •  Family obligations •  Larger ? fibroid in

uterus

Uterine Sarcoma

Endometrial Stromal Sarcoma

•  5% of uterine cancers are sarcomas

•  5% of uterine sarcomas are endometrial stromal sarcomas

•  High grade Stage IV, poor survival

Decisions

•  Opinions –  Sinai –  Sloan Kettering –  Harvard –  Hopkins –  Mayo –  MD Andersen

•  Would it be indolent •  Down side of

chemotherapy

“It’s always darkest before it goes pitch black” Author unknown

January 5 CT Scan

•  Multiple metastases in both lung fields •  Lesions near pericardium and aorta •  2 cm lymph node in left pelvic side wall •  CXR 6 weeks prior was clean

The Future Fades From View

CT Scan January 5, 2006

The Treatment Plan I Chose Rodrigo B Erlich, M.D.

Sinai Hospital of Baltimore Lapidus Cancer Institute

2401 W. Belvedere Avenue Baltimore, MD 21215

Chemotherapy Regimen •  Week 1

–  Erbitux –  Avastin –  Taxotere –  Gemcitabine

•  Week 2 –  Erbitux –  Taxotere –  Gemcitabine

•  Week 3 –  Erbitux

6

Cycles

Chemotherapy Side Effects • Fatigue

• Neutropenia

• Flu-like symptoms

• Alopecia- HDD

• Constipation

• Eye problems

• Rash/ Nose bleed

• Finger tip- splits

The Dream Causes – Exhaustion – Doubts about

life/career – Thoughts about

dying alone – Aging as a

surgeon, person

The Choice- Accept that the future is unknown

For every door that closes, another opens

•  Having your career pulled out from under you

•  Understanding the flow of energy

•  Absence of anger and the kindness of others

Chi Gong

•  Healing aspect of Tai Chi

•  The Chi Gong Master •  10 Friends- 2 day

seminar •  Quantum touch •  The litmus test •  The bowl experience

Acupuncture

•  5000 year old practice

•  Aligning energy (chi)

•  exam •  Needles do hurt •  Herbs-

–  Rei Mushroom tea

The Rest of the Regimen

•  Moderate work •  Moderate exercise •  Faith/prayer •  Guided imagery •  Desiderata •  Serenity prayer

Pet Scan - May 25, 2006

Remission !

Treatment Regimen Continued

IV Medication for another year and then oral drug-Tarceva

July 25, 2007

14 months of remission

November 2007

Re-occurrence – Metastatic Sarcoma in the Lymph Node Iliac Chain- Toricel

What Happened to my Extended Cancer Warranty ?

•  Lots of Chemo

•  No Hair

•  Fatigue

No More Cancer

Guaranteed !!!

My Treatment Plan

Daily Radiation Therapy for 5 Weeks

Camp Chemo-weekly

IVC Filter

Good News….. Bad News … February 2008

June 2008:

My PET Scan shows a lesion in the left lung.

You have about 6 months to live…

Biopsy is negative…Never Mind.

April 2008:

Mickey has reoccurrence…multiple mets to liver and bone.

Summer 2009

Treatment Regimen:

Doxirubicin

Topotecan

Winter 2010

Cancer asks

Would You Like to have this Dance?

Who’s Winning Today?

As they break away from the gate it’s Cancer - 2 lengths behind Good Health…..

Some stories don’t have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what’s going to happen next. Delicious Ambiguity…

Gilda Radner

Remission

Re-occurrence

… is “hanging on” between PET Scans

… is a journey without a map

… is a clock without time

… disrupts the natural rhythm

… begins with attention to basic needs

… requires doing things smarter.

… forces choices

Attitude and the Tibetan Bowls

It’s a legacy mightier than a concert. Make music with what remains. Complete the song left for us to sing. Transcend the loss. Play it out with heart, soul, and might with all remaining strength within us.”

Rabbi Schulweis

“It’s my task to make music with what remains”

Yitzhak Perlman

What are our Limits? •  We all have a limit- the

end of life is death •  That limit is likely not

what you thought •  The limit is probably a

moving target •  I have not reached my

limit yet •  If and when I get there, I

hope that my decision can be accepted and supported This story is not about ME….it’s about US.

Progression of Hope

Hope for cure Hope for long remission Hope for short remission Hope for comfort Hope for a good death Hope for a legacy Dunn G

Indigo Girls – Closer to Fine

I went to the doctor, I went to the mountains. I looked to the children, I drank from the fountains, we go to the doctor, we go to the mountains, we look to the children, we drink from the fountains, we go to the bible, we go through the workout, we read up on revival and we stand up for the lookout, there's more than one answer to these questions pointing me in a crooked line. The less I seek my source for some definitive the closer I am to fine, the closer I am to fine

The End ?

…or the Beginning