The document discusses the challenges in communication between oncologists and patients, highlighting that many patients with incurable lung cancer lack understanding of their prognosis and treatment options. It advocates for the use of decision aids to provide patients with critical information about their illness, while emphasizing the benefits of palliative care in improving quality of life and extending survival. The document also defines key terms related to cancer treatment and palliative care, urging a shift towards better patient-doctor discussions on prognosis and care options.

1. Thomas J Smith, MD, Johns
Hopkins Hospital
Decision Aid
Upgrade: A Design
Challenge

2. 2
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.

3. 3
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

4. 4
The Oncology Visit
“We’ve found a mass. The good news is we have
weapons of mass destruction.”

5. 5
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.

6. 6
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

7. 7
Questions

8. 8
Appendix

9. 9
Palliative care
Early 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 / Recommendations
For 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