“How Long Do I Have, Doc?”Recognizing and

Communicating Prognosis

Laura C. Hanson, MD, MPHGeriatric Medicine

Palliative Care Program

The Death of Ivan Illych

“What tormented Ivan Illych most was the deception, the lie, which for some reason they all accepted, that he was not dying but was simply ill, and that he only need keep quiet and undergo a treatment and then something very good would result.”

Leo Tolstoy, 1886

Prognosis

“Being honest is a big deal. She never had a clue that she was that close to the end. I think doctors should have told her that death was close. She never had the chance to say good-bye.”

-- recently bereaved family member

Why talk about prognosis? To improve communication

help patients know what to expect allow spiritual, emotional preparation

To make rational treatment recommendations

To allow access to Hospice

Prognosis

Prediction of possible future outcomes of a treatment, treatment options, or a disease course based on medical evidence and on clinical experience. Life expectancy Probability of survival Trajectory of illness, function,

symptoms

What do seriously ill patients want?

Patients define goals of care: receiving adequate pain management avoiding prolongation of dying achieving sense of control relieving burdens strengthening relationships

Singer PA et al. JAMA 1999; 281:163-168

Patients and prognosis Patients overestimate prognosis

96% of patients with a 50/50 chance of living 6 months believe they will survive

Chronically ill patients value their quality of life more highly than do their families or physicians

ExpectationsStudy of n=126 family surrogates for

patients receiving prolonged mechanical ventilation, and their physicians

Family expected 1-yr survival 93% MD expected 1-yr survival 43%

Family expected 1-yr function 71%MD expected 1-yr function 6%

Actual 1-yr survival with high function: 9%Cox CE, Crit Care Med

2009

Physicians and prognosis

MD survival estimates for 468 terminally ill patients enrolling in hospice median survival 24 days 20% accurate, 63% overestimated, 17%

underestimated accuracy increased with experience and

shorter MD-patient relationship physicians gave patients more optimistic

information than they believedChristakis, BMJ 2000

SUPPORT COPD guideline

Hospice referral criteria –1. Hospital re-admission within 2 mos2. ADL dependency 3+3. Weight loss of > 5 lbs in 2 months4. Albumin < 2.55. Cor pulmonale6. PO2 < 55 mmHg on oxygen

Se low (1-42%) – Sp mod-high (99-67%)Fox E,

JAMA 1999

Prognosis: COPD

Variable life expectancy even within hospice population

Function, nutrition, hospitalizations BODE Index score 7-10 (30-40% MR 6

mos) BMI < 21 (1) FEV1 36-49% (2) or < 35% (3) Dyspnea MMRC score of 3 (2) or 4 (3) 6 min walk: 150-249 m (2) or < 149 m (3)

Prognosis: Lung cancer

Non-small cell lung cancer: 5 yr survival

Stage II – 36-46%Stage III – 9-24%Stage IV – 2% (median survival 6

mos)

Prognosis: prolonged respiratory failure

Study of n=300 ICU patient with prolonged mechanical ventilation (21 days)

1-year MR 51% Mortality risk factors – vasopressor use,

hemodialysis, platelets <150, age>49 High risk of death Se 0.42, Sp 0.99 Carson SS, Crit Care Med 2008

SUPPORT prognostic estimates

SUPPORT Prognostic model 37% died in 6 months Of those with a <50% 6-month mortality risk,

actual survival was 54% and median survival was 236 days

50% 2-month probability of survival = 60 day median survival

How would you communicate this information?

Hospice dementia guideline

Clinical progression of primary disease, decline in functional status or multiple ER / hospital transfers in past 6 months

Impaired nutritional status – loss >10% TBW and / or low albumin

Unable to ambulate or communicate meaningfully

Infectious complications

Referral to Hospice

Patient / family elect palliative goals of care

Prognosis 6 months or less “if disease follows expected course” most referrals are < 1 month prior to

death earlier referrals allow better care patients may enroll and disenroll

Defining “end of life” Progressive incurable disease “Death in the next year wouldn’t

surprise me.” Life expectancy of 6 months or

less Prediction of the timing of death is

not very accurate 6 months out

Communication=talking + listening

Study of 51 ICU family conferences – Family talks an average of 29% of the

time Increased proportion of family speech

was associated with increased satisfaction with communication, decreased feelings of conflict with MD

McDonagh JR, Crit Care Med 2004

What can you say? Ask patient / family what they think

is going to happen -- then listen Acknowledge uncertainty

“None of us really know when death will come, but we all want to be ready”

Be sympathetic “I know this must be hard for you, and I

am sorry your illness is getting worse.”

What can you say?Communicate life expectancy in time

frames “She is likely to have days to weeks,

but not months of time left to live.” “I think she could live a few months,

but is unlikely to live another full year.”

“This illness is one that our best medical treatments can’t cure, but people often live with it for years.”

What can you say?

Communicate illness trajectory Discuss whether the illness can or

cannot be cured Whether treatment can address other

outcomes such as function or symptoms

What can you say? Don’t give false hope for cure or longterm

survival Give hope -- for goals you can assist with

“We plan to keep using his breathing medicines and keeping his lung function the best it can be.”

“We will work very hard to treat any pain you have, and make each day as comfortable and pleasant as possible.”

Give hope – for not being left without help “You can count on me – or Dr. S in our clinic -

to be help you during this difficult time.”

Communicating palliative care

Ask about treatment preferences Have you thought about life-

prolonging treatments if you have an illness that our best treatments cannot cure?

Does he have a living will or other advance directive that mentions artificial feeding?

Communicating palliative care Since treating your pain, you seem

calmer and more able to move around I know it is hard watching him refuse

food, but most patients with his illness do not feel hungry or thirsty

Do you have any religious concerns about this decision?

If you would like to help him be more comfortable, I suggest . . .

Communicating Palliative Care Document Plan

Rationale for prognosis Discussion of treatment options and

choice Goals of medical treatment Specific “do not” orders AND

treatments for comfort Hospice referral