Dr. Gawande’s talk entitled “Will We Be Technicians or Counselors?” centered around the experience he had with his daughter’s piano teacher who was diagnosed with rhabdomyosarcoma. Her treatment included a hemipelvectomy, radiation, chemotherapy, removal of hardware following infectious complications, three months of bedrest and finally replacement of hardware prior to being discharged home. She was making an adequate recovery, with an excellent prognosis from her rhabdomyosarcoma, when she was diagnosed with myelodysplastic syndrome secondary to complications from the chemotherapy she received. During one particular hospital admission, Dr. Gawande received a call from the piano teacher’s husband that the myelodysplastic syndrome treatment wasn’t working, however, what was diagnosed was a recurrence of the rhabdomyosarcoma with metastasis to the liver. From this patient and family, Dr. Gawande posed the question “What next”?
What we as oncologists and surgeons may think is ‘great care’ may not be what the patient desires. We’re taught during medical school and residency ‘how to do stuff’ (technicians) and to try and prolong the quantity of life, but this may not translate into what the patient ultimately wants. Dr. Gawande highlighted a particular study that stood out to him when he was searching for the answer to how do we balance quantity and quality of life goals with patients. In this study, investigators assessed whether early palliative care (at diagnosis) affects the frequency and timing of chemotherapy use and hospice care for non-small cell lung cancer (NSCLC) patients.1 There were 151 patients with newly diagnosed metastatic NSCLC that presented to an outpatient clinic at a tertiary cancer center who were randomized to either early palliative care integrated with standard oncology care or standard oncology care alone. The authors found that the overall number of chemotherapy regimens did not differ significantly by study group. However, compared with those in the standard care group, participants receiving early palliative care had half the odds of receiving chemotherapy within 60 days of death (OR 0.47, 95% CI 0.23-0.99), a longer interval between the last dose of IV chemotherapy and death (median 64 days versus 40.5 days; p = 0.02), and higher enrollment in hospice care for longer than one week (60% v 33%; p = 0.004). Early palliative care in this study improved key measures in quality end-of-life care.
Dr. Gawande also highlighted another paper from the same cohort that looked at quality of life and mood, which were assessed at baseline and at 12 weeks with the use of the Functional Assessment of Cancer Therapy-Lung (FACT-L) scale and the Hospital Anxiety and Depression Scale, respectively.2 The primary outcome was the change in the quality of life at 12 weeks. This study found that among 107 patients evaluable, those assigned to early palliative care had a better quality of life than patients assigned to standard care (mean score on the FACT-L scale, 98.0 vs. 91.5; p=0.03). Secondly, fewer patients in the palliative care group than in the standard care group had depressive symptoms (16% vs. 38%, p=0.01). Despite fewer patients in the early palliative care group receiving aggressive end-of-life care, the median survival was longer among patients receiving early palliative care (11.6 months vs. 8.9 months, p=0.02). In Dr. Gawande’s opinion, this is the perfect merger for improving both quantity and quality of life.
What were these palliative oncologists doing? Dr. Gawande talked to the doctors in the trial and found they were asking fairly simple questions, including (i) What are your goals for your quality of life? (ii) What are your priorities for your quality of life? (iii) What matters to you most? (iv) Where do you draw the line between what you will accept and not accept? He found that these physicians had much more of a counselor mentality than a technician mentality. Dr. Gawande then talked with more than 200 patients and their families, asking them these questions, and found that patients want to be asked these questions. Furthermore, he found that patients often want to “have a good day” and often their actions focus on this goal. Fears and worries about family and personal finances may also plague patients. Dr. Gawande shadowed a palliative care nurse, noting that while our goal may be to extend quantity of life, their main goal is to do everything they can to give the patient their best day possible in spite of the circumstances.
To assess the impact of high-quality conversations between clinicians and seriously ill patients, Dr. Gawande and his team performed a cluster randomized clinical trial of the Serious Illness Care Program at the Dana Farber Cancer Institute.3 There were 278 patients with advanced cancer and 91 oncology clinicians. The co-primary outcomes included goal-concordant care (Life Priorities) and peacefulness (Peace, Equanimity, and Acceptance in the Cancer Experience questionnaire) at the end of life. Secondary outcomes included therapeutic alliance (Human Connection Scale), anxiety (Generalized Anxiety Disorder 7 scale), depression (Patient Health Questionnaire 9), and survival.
The Serious Illness Conversation Guide is as follows:
Forty-seven clinicians (97.9%) rated the training as effective and of 39 who received a reminder, 34 completed at least one conversation (median duration 19 minutes; range 5-70) minutes. Peacefulness, therapeutic alliance, anxiety, and depression did not differ at baseline. There were no significant differences between the intervention and control groups, however the trial demonstrated significant reductions in the proportion of patients with moderate to severe anxiety (10.2% vs 5.0%; p = 0.05) and depression symptoms (20.8% vs 10.6%; p = 0.04) in the intervention group at 14 weeks after baseline. Interestingly, anxiety reduction was sustained at 24 weeks (10.4% vs 4.2%; p = 0.02), but depression reduction was not.
Going back to Dr. Gawande’s example of his daughter’s piano teacher, he asked her these very questions above. She feared pain and death in the hospital. She wanted to fight for ‘one good day.' Subsequently, she was discharged from the hospital with hospice care. Dr. Gawande told his daughter there would be no more piano lessons, that her teacher was dying. Thus, he was surprised when the piano teacher called and mentioned that she wanted Dr. Gawande to bring his daughter by for a piano lesson. Her hospice nurse explained that the reason she wanted to teach in her final days was that her ability to teach piano lessons brought her the most possible joy. After working to monitor her pain medication doses, she was able to teach for an additional six weeks, with a final recital for her and her students.
Presented by: Atul Gawande, MD, MPH, Brigham and Women’s Hospital, Boston, MA
Written By: Zachary Klaassen, MD, MSc, Assistant Professor of Urology, Georgia Cancer Center, Augusta University/Medical College of Georgia, @zklaassen_md at the 2019 ASCO Annual Meeting #ASCO19, May 31-June 4, 2019, Chicago, IL USA
- 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 Clin Oncol2012;30(4):394-400.
- Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med2010;363(8):733-742.
- Bernacki R, Paladino J, Neville BA, et al. Effect of serious illness care program in outpatient oncology: A Cluster Randomized Clinical Trial. JAMA Intern Med2019 Mar 14 [Epub ahead of print]