I continue to be struck by the creativity of medical oncologists. The reimagining of dosing, duration, or regimen composition to respond to patient symptoms or preferences is like a master chef in the kitchen. Although standardization has, with good reason, become the paragon, delivering goal-concordant care at times necessitates thoughtful deviation. Eavesdropping on my colleagues discussing whether they would accept induction chemotherapy if they were diagnosed with acute myeloid leukemia at age 75 or avoid androgen-deprivation therapy in a man of 50 with unfavorable intermediate-risk prostate cancer concerned
“One of the oft-cited criticisms of advance care planning is that it covers hypothetical scenarios and is often frozen in time.”— S. Monica Soni, MD
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about sexual function makes me appreciate the art of medicine. And, I wonder, how can we capitalize on that same creative thinking in our care of the dying patient?
A Need for Imaginative Thinking
My mother-in-law, Dr. B, a practicing pediatrician for more than 40 years, died recently of multiple myeloma. She was diagnosed 5 years ago and had such a strong aversion to the possibility of nearly any side effect from treatment that she declined all chemotherapy, including those that likely would have better maintained her quality of life. She worked up until nearly the end, still rounding on the weekends in the newborn nursery and taking after-hours calls. She was quite a woman.
When she initially received her diagnosis and declined all treatment options, Dr. B was immediately offered hospice care. At the time, despite pain, she was independent, functional, and working. She told us that she did not want to “become a patient.” She resented that offer for hospice care and, even at the end, boasted that she had lived 5 years after that initial suggestion. Her medical oncologist saw her every 3 months, diligently ordering lab tests and bone scans, but there was little to no conversation about out-of-the-box approaches to help her achieve her clearly articulated goals of being comfortable and not becoming a burden to family. It all felt very black and white. Either she would be a patient on active therapy, or she should be in hospice care.
This lack of imagination had real-life impacts—causing my mother-in-law to endure preventable suffering, as her loved ones watched in frustration. Despite being a tenured physician, she had no experience with multiple myeloma or the many advances in the field. Her strong will and adamance might have been mistaken by her physicians for informed consent, closing the door on conversations about therapies that would control her pain without disrupting her caregiving duties or home modifications that would help her live more safely. To her medical care team, it seemed that her do-not-resuscitate status was incompatible with her obvious engagement with her health and desire to keep living her life fully, completely, and autonomously.
In the aftermath of her death, which did ultimately occur in home hospice care, and I believe honored her wishes, I have been reflecting on how to achieve that ever-elusive goal of delivering goal-concordant care for patients with cancer.
Shared Decision-Making Requires Knowledge of Person-Centered Outcomes
At times, I find medical jargon (whole-person care, goal-concordance, patient-centered) gets in the way of what we as clinicians are trying to do. In simplistic terms, we want patients with cancer to receive care that “aligns with their values and unique priorities.”1 Step 1 of delivering goal-concordant care necessitates that we spend time eliciting those values and priorities, expect that those wishes will change over time, and reassess them multiple times throughout the care journey. One of the oft-cited criticisms of advance care planning is that it covers hypothetical scenarios and is often frozen in time.2 Certainly, effective, collaborative conversations about goals of care should cover immediate concerns, anticipate future critical shift points, and be iterative. In Dr. B’s case, rather than explore all the gray zones that occur in cancer care and scenario planning, a one-and-done approach was taken. Thankfully, studies have shown that, with appropriate training, this can be done without upending a packed clinic schedule.3
Step 2 is a tricky one, and where we in the medical field have true gaps. To facilitate patients’ receipt of treatment that is aligned with their wishes, we must be able to turn to a strong evidence base of person-centered outcomes. If a patient says improving or maintaining quality of life is the most important factor, can we say with certainty whether a regimen will meet that prerequisite? In a review of oncology drug indications approved by the U.S. Food and Drug Administration, from 2006 to 2017, just 40% included evidence of impact on quality of life, and, shockingly, only 6% showed clinically meaningful improvements in quality of life.4
“The patient engagement generated in the oncologist’s office ideally leads to an amplified voice in other care settings.”— S. Monica Soni, MD
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Although experience allows treating oncologists to share useful information on expected toxicities, without more robust data collected before and after drug approval, we are limited in our ability to help patients effectively compare treatment options. More widespread use of patient-reported outcomes will further provide much-needed guidance. For Dr. B, a true believer in evidence-based medicine, this could have been a key differentiator in her care choices.
After carving out time, inviting patients to participate in shared decision-making, and presenting options, a preference-based decision can be made. At this third step, we should be deploying evidence-based communication strategies such as motivational interviewing as well as ask-tell-ask and teach-back methods.5,6 Each of these approaches may help to reduce gaps in patients’ understanding of their medical situation and may mitigate barriers around health literacy. Patient decision aids, which translate complicated evidence and help walk patients through options, are another critical yet underutilized tool.7
Although we typically ascribe health literacy challenges to patients of lower socioeconomic status and lower educational attainment, the truth is that only oncologists are literate in oncology. All patients need translation, education, and help with information processing. It was clear to me that my mother-in-law, despite being a highly educated physician, had gaps and misunderstandings in her recommended treatment that prevented true receipt of aligned care.
Finally, we must deliver on what was agreed upon, and that extends beyond just our immediate sphere of influence. Goal-concordant delivery of care must also move in tandem with a high-quality experience of care. This means emergency, inpatient, and other specialty services must build upon the foundational plan created between the oncologist-patient dyad. This is where patient empowerment and self-efficacy come into play as a critical part of the process. The patient engagement generated in the oncologist’s office ideally leads to an amplified voice in other care settings.
Ensuring True Patient-Centered Care
I fear my mother-in-law did not benefit from best practices in shared decision-making. Although her wishes were elicited, there was insufficient exploration of treatment options, palliative or otherwise.
In my angrier moments, I rewrite her journey in my head:
When she declined chemotherapy because of concerns about side effects, her treating provider should have shared the studies showing meaningful improvements in patient-reported outcomes, quality of life, and pain using easy-to-understand decision aids.
When her pain began to worsen, she should have had an early consultation with a radiation oncologist to discuss palliative care options that would not have disrupted her clinic schedule.
As her bony disease spread, the benefits of zoledronic acid should have been discussed and longer-interval dosing offered to minimize time off work, or she could have been taught how to self-administer denosumab in the comfort of her own home.
“Pathways, protocols, and algorithms are necessary and useful, but the magic of medicine is in knowing when and how to deviate in support of the patient in front of us.”— S. Monica Soni, MD
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Rather than primarily be offered opioids for pain, which she was highly reluctant to take, her palliative care team should have considered corticosteroids or the use of agents for neuropathic pain just at bedtime in case of sedation side effects.
Despite her declination of hospice early in her disease course, a home safety evaluation should have been offered, with modifications to her bathroom and durable medical equipment provided to prevent falls.
When she landed in the hospital with cancer-induced cachexia and hypoglycemia requiring a continuous glucose drip, the team should have discussed hospice immediately.
However, none of the above steps were taken. For Dr. B, her do-not-resuscitate status on the advance directive, which had been completed several years before her decline, felt more like a barrier than an enabler. Although she died with dignity at home, the way she chose, I don’t believe goal-concordant care was delivered to her along the way. No one spent time genuinely thinking about how to keep her taking care of her pediatric patients while managing her symptom burden.
Pathways, protocols, and algorithms are necessary and useful, but the magic of medicine is in knowing when and how to deviate in support of the patient in front of us.
DISCLOSURE: Dr. Soni is an advisor for Waymark.
1. McNiff KK, Caligiuri MA, Davidson NE, et al: Improving goal concordant care among 10 leading academic U.S. cancer hospitals: A collaboration of the Alliance of Dedicated Cancer Centers. Oncologist 7:533-536, 2021.
2. Cavallo J: Is advance care planning of any value? A conversation with R. Sean. Morrison, MD. The ASCO Post. August 25, 2022. Available at https://ascopost.com/issues/august-25-2022/is-advance-care-planning-of-any-value/. Accessed September 22, 2022.
3. Pintova S, Leibrandt R, Smith CB, et al: Conducting goals-of-care discussions takes less time than imagined. JCO Oncol Pract 16:e1499-e1506, 2020.
4. Arciero V, Santos SD, Koshy L, et al: Assessment of Food and Drug Administration–and European Medicines Agency–approved systemic oncology therapies and clinically meaningful improvements in quality of life: A systematic review. JAMA Netw Open 4:e2033004, 2021.
5. Spencer JC, Wheeler SB: A systematic review of motivational interviewing interventions in cancer patients and survivors. Patient Educ Couns 99:1099-1105, 2016.
6. Choi S, Choi J: Effects of the teach-back method among cancer patients: A systematic review of the literature. Support Care Cancer 29:7259-7268, 2021.
7. McAlpine K, Lewis KB, Trevena LJ, et al: What is the effectiveness of patient decision aids for cancer-related decisions? A systematic review subanalysis. JCO Clin Cancer Inform 2:1-13, 2018.
Dr. Soni is Associate Chief Medical Officer of New Century Health in Los Angeles, California.
Disclaimer: This commentary represents the views of the author and may not necessarily reflect the views of ASCO or The ASCO Post.