Thomas J Smith, MD, Johns

Hopkins Hospital

Decision Aid

Upgrade: A Design

Challenge

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The Problem

• Current communication between oncologists and their patients is not satisfactory.

– Only 17% of incurable lung cancer patients could guess that their prognosis was less than 2 years. 1

– Most (69%) of patients with metastatic lung cancer did not understand that chemotherapy was very unlikely to cure their cancer. 2

– 80% of patients want to know the full truth about their diagnosis, even though it may be uncomfortable or unpleasant.3

1. Liu PH, Landrum MB, Weeks JC, et al. Physicians' propensity to discuss prognosis is associated with patients' awareness of prognosis for metastatic cancers. Journal of palliative medicine. Jun 2014;17(6):673-682.2. Weeks JC, Catalano PJ, Cronin A, et al. Patients’ expectations about effects of chemotherapy for advanced cancer. N Engl J Med. 2012;367(17):1616-1625.3. IOM (Institute of Medicine). 2013. Delivering high-quality cancer care: Charting a new course for a system in crisis. Washington, DC: The National Academies Press.

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The Alternative

• Benefits experienced by people who understand the trajectory of their illness and their likelihood of survival

– Early and adequate treatment of stress and symptoms

• Through enrollment in palliative care and/or hospice

– Less depression and anxiety

– Time to clarify end-of-life wishes

– Time for life closure tasks

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The Oncology Visit

“We’ve found a mass. The good news is we have weapons of mass destruction.”

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Shouldn’t people get this

information from ___________?

• Yes, but doctors reluctant to share prognostic information (uncomfortable, hard to do, takes time, misconceptions about what people actually want.)1

• The Internet does not give people any reasonable answers, yet.2

– Only 8% of websites addressing the most common 10 cancers had ANY information about how long the average person would live.

– Or about how effective chemo was at reducing symptoms.

1. Mack JW, Smith TJ. Reasons why physicians do not have discussions about poor prognosis, why it matters, and what can be improved. J Clin Oncol. 2012 Aug 1;30(22):2715-7.

2. Chik T, Smith TJ. Getting Helpful Information from the Internet about the Prognosis with Advanced Cancer. J Oncol Prac, in press.

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The Decision Aid

• Addresses decision points patients face when considering distinct lines of chemotherapy

• Includes statistical information on: – The average patient's chances of being alive at one year using a

specific chemotherapy;

– How long it will take for the cancer to begin to grow again after chemotherapy;

– The likelihood of particular side effects

• Also addresses spiritual, financial issues, and advance care planning

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Questions

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Appendix

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Palliative careEarly palliative care improves quality of life and survival1

RCT of 151 patients with non-small cell lung cancer; 107 (86%) completed assessments.

Patients had a better quality of life and fewer depressive symptoms

Median survival was 2.7 months longer

Patients were less likely to receive chemotherapy in the last 60 days of life.2

• Longer interval between last dose of chemotherapy and death

• Higher enrollment in hospice care for longer than 1 week

1. Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med. 2010;363(8):733-742.2. Greer JA, Pirl WF, Jackson VA, et al. Effect of early palliative care on chemotherapy use and end-of-life care in patients with metastatic non-small-cell lung cancer. J Clinical Oncology. 2012;30(4):394-400.

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Since 2012 ASCO has recommended

that patients with metastatic or advanced

cancer be offered palliative care,

concurrent with standard treatment

Guidelines / RecommendationsFor Oncologists – Professional guidance

For Consumers – Choosing Widely

Patients with cancer that cannot be cured should talk with their doctors and learn more about palliative and hospice care while they are still relatively well.

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Definitions

• Prognosis: the likely outcome or course of a disease; the chance of recovery or recurrence

• First Line: the first treatment given for a disease

• Second Line: treatment that is given when initial treatment (first-line therapy) doesn’t work, or stops working

• Third Line: treatment that is given when both initial treatment (first-line) and subsequent treatment (second-line) don’t work, or stop working

• Metastatic disease / Metastasis: when the cancer has spread from the primary site (place where it started) to other places in the body

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Definitions Cont’d

• Palliative radiation: radiation to alleviate pain, remove compression of tumor on a vital organ, or prevent fracture if the cancer has spread to a weigh-bearing bone

• Palliative Care: care given to improve the quality of life of patients who have a serious or life-threatening disease. The goal of palliative care is to prevent or treat as early as possible the symptoms of a disease, side effects caused by treatment of a disease, and psychological, social, and spiritual problems related to a disease or its treatment. Palliative care is appropriate at any stage of a serious illness.

• Hospice: a program that provides special care for people who are near the end of life and for their families, either at home, in freestanding facilities, or within hospitals