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

“How Long Do I Have, Doc?” Recognizing and Communicating Prognosis. Laura C. Hanson, MD, MPH Geriatric Medicine Palliative Care Program. The Death of Ivan Illych.

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

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  1. “How Long Do I Have, Doc?”Recognizing and Communicating Prognosis Laura C. Hanson, MD, MPH Geriatric Medicine Palliative Care Program

  2. 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

  3. 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

  4. 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

  5. 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

  6. 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

  7. 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

  8. Expectations Study 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

  9. 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 believed Christakis, BMJ 2000

  10. SUPPORT COPD guideline Hospice referral criteria – • Hospital re-admission within 2 mos • ADL dependency 3+ • Weight loss of > 5 lbs in 2 months • Albumin < 2.5 • Cor pulmonale • PO2 < 55 mmHg on oxygen Se low (1-42%) – Sp mod-high (99-67%) Fox E, JAMA 1999

  11. 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)

  12. 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)

  13. 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

  14. 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?

  15. 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

  16. 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

  17. 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

  18. 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

  19. 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.”

  20. 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.”

  21. 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

  22. 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.”

  23. 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?

  24. 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 . . .

  25. 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

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