Over the past 2 years, my family and I have experienced firsthand the challenges of cancer. In the spring of 2021, my mother was diagnosed with stage IIB pancreatic cancer. She died in mid-2023 after developing metastatic disease, including peritoneal carcinomatosis. The experience has caused me to reflect on cancer’s effect—not just on the patient but on close family members as well—and to try as best as I can to draw some lessons in ethics, law, and health-care policy.
Govind Persad, JD, PhD
Coping With the Cost of Medical Care and Caregiving
After my mom’s diagnosis, the cancer was resected with clear margins. Subsequently, she had a round of FOLFIRINOX (leucovorin, fluorouracil, irinotecan, and oxaliplatin) chemotherapy. After a local recurrence in 2022, my mother received second-line chemotherapy, which made her a candidate for radiation therapy at the recurrence site after the tumor had shrunk. Unfortunately, after she completed radiation therapy, she experienced peritoneal metastases, with no available curative option.
All during her care, the U.S. health-care system lived up to its reputation as excellent for high-tech medicine, but it struggled with wraparound services, such as in-home health aides. Her surgery, chemotherapy, and radiation therapy were conducted with minimal out-of-pocket costs since my mom had Medicare in addition to a supplemental plan. Had she wanted to use proton beam therapy rather than traditional radiation therapy, she would have had good prospects for coverage of that as well.
As the end of my mother’s life approached, my sister and her family moved in with her as caregivers. She was fortunate also to have other local family members and friends who came for weekends or nights to spend time with her and provide respite for her main caregivers. I traveled to spend time with my mother as well.
Like most married couples in the United States, my sister and her spouse both work outside the home, and eventually home health aides were needed during the daytime to care for my mom. Medicare does not cover home health care that is needed for assistance with the activities of daily living, such as bathing, toileting, and dressing, but it does cover part-time or intermittent skilled nursing care, therapy, and other aid that is medically necessary and ordered by a physician.
Friends and family also helped to take my mother to chemotherapy infusion and radiation appointments. Many patients are not as fortunate to have family members or friends close by or who are able to take substantial time away from their own families or jobs to provide caregiving. If my sister had not already been living in Texas and did not have a flexible job that allowed her to provide backup daytime coverage, I am not sure what we would have done.
The current approach in the United States to caregiving for patients with cancer—and other life-threatening diseases—relies on unpaid, informal caregivers (typically women), many of whom are juggling caregiving responsibilities with full-time jobs and raising children.1
In a 2014 study in the Journal of Clinical Oncology, Dr. Donald H. Taylor, Professor in the Sanford School of Public Policy, and his coauthors found that patients with cancer on Medicare often would have preferred other forms of support rather than access to the maximal number of chemotherapy drugs.2
In reflecting on our experience, this finding rang true for my family. There is no doubt that if my mother’s terminal stage had lasted longer, we would have struggled to provide adequate support for her. My mother was about to enter home hospice care when she passed, but even that program would not have provided the full-time daytime care she needed, and her city lacked access to inpatient hospice facilities.
Overcoming the Barriers to Clinical Trial Participation
After my mom’s cancer recurrence, we explored potential clinical trials, which she was interested in joining. A major challenge for clinical trial participation that ultimately precluded her participation, though, was the need to travel to the trial site. The time needed to travel to the site and remain onsite to receive the study intervention would have made it difficult for her to do what she valued doing in her remaining time alive: spending time with her grandson who lived nearby. It would also have been difficult to obtain workable housing and support in another city.
Clinical trial designs that allow the administration of a study intervention at patients’ local medical facilities instead of requiring them to travel to a central site could help patients in similar situations who are interested in participating in trials but who face mobility barriers or are not willing to substantially trade off quality of life to participate in a clinical study.
During the COVID-19 pandemic, guidance on cancer clinical trial participation from the U.S. Food and Drug Administration and National Cancer Institute allowed the “use of virtual clinic visits, delivery of investigational products to the home, and use of alternative laboratories or imaging centers.” 3 An extension of these practices postpandemic would have been helpful for my mother.
A recent survey suggests that “cancer clinical trials leveraging remote technology and decentralization tools to reduce patient time and travel burden associated with participation may increase the patient consent rate.” 4 Such trials could help enroll a more representative population, including patients with low income, patients living in rural areas, patients who still have caregiving responsibilities, and patients who have medical limitations that affect their ability to travel.
Managing Pain and Fear of Death
During her illness, although her pain was also managed with opioids, my mom was interested in pursuing pain management options other than opioids, but none were available. In her home state of Texas, substantial legal red tape limits access to drugs for the management of chronic cancer pain. And most cannabis-based products are prohibited by state law, which is actively enforced, even for medical use.
There is limited access to low-tetrahydrocannabinol (THC) cannabis in Texas for patients with cancer, and it must be approved through a pain management physician. Recent proposals to change cannabis scheduling could improve access to medical cannabis in some states,5 though states could continue to adopt restrictive laws.
Psychedelic therapies, such as psilocybin, were another potential option for helping with anxiety and fear. However, there were no clinical trials for these therapies because of state and federal laws restricting their use, despite research suggesting these interventions may reduce feelings of fear or dread in patients with terminal conditions, including terminal cancers.6 I wish my mom had had the option to enroll in a psychedelic therapy trial or otherwise receive these interventions if she had chosen to do so.
Obtaining mental health counseling and support was also challenging. Many mental health providers—far more than providers in other specialties—do not accept Medicare.7 Fortunately, she was able to receive services from a social worker at her oncology practice, which was tremendously helpful. Integrating mental health services could be a valuable addition to patient care.
Easing the Dying Process for Patients and Family Members
The end of life may never be easy, but there are things we could do to make the dying process easier for patients and family. Perhaps the greatest is more comprehensive support for caregivers, including financial support for home health assistance. For interested patients, easier access to clinical trials could help us progress toward more effective curative or progression-delaying treatment options. And to help manage pain and distress, greater availability of and access to mental health counseling could be useful, as can the option to obtain medical cannabis and psychedelic therapies to reduce fear and anxiety.
DISCLOSURE: Dr. Persad has received grant funding from the Greenwall Foundation.
REFERENCES
1. Stall NM, Shah NR, Bhushan D: Unpaid family caregiving—The next frontier of gender equity in a postpandemic future. JAMA Health Forum 4:e231310, 2023.
2. Taylor Jr DH, Danis M, Zafar SY, et al: There is a mismatch between the Medicare benefit package and the preferences of patients with cancer and their caregivers. J Clin Oncol 32:3163-3168, 2014.
3. Flaherty KT, Doroshow JH, Galbraith S, et al: Rethinking cancer clinical trial conduct induced by COVID-19: An academic center, industry, government, and regulatory agency perspective. Cancer Discov 11:1881-1885, 2021.
4. Adams DV, Long S, Fleury ME: Association of remote technology use and other decentralization tools with patient likelihood to enroll in cancer clinical trials. JAMA Netw Open 5:e2220053, 2022.
5. Congressional Research Service, Insight: Department of Health and Human Services Recommendation to Reschedule Marijuana: Implications for Federal Policy. Available at https://crsreports.congress.gov/product/pdf/IN/IN12240. Accessed January 29, 2024.
6. Kupferschmidt K: Hallucinogenic drugs help cancer patients deal with their fear of death. Science, December 1, 2016. Available at www.science.org/content/article/hallucinogenic-drugs-help-cancer-patients-deal-their-fear-death. Accessed January 29, 2024.
7. Bishop TF, Press MJ, Keyhani S, et al: Acceptance of insurance by psychiatrists and the implications for access to mental health care. JAMA Psychiatry 71:176-181, 2014.
Dr. Persad is Associate Professor at the University of Denver Sturm College of Law.
Editor’s Note: The Law and Ethics in Oncology column is meant to provide general information about legal topics, not legal advice. The law is complex, varying from state to state, and each factual situation is different. Readers are advised to seek advice from their own attorney.
Disclaimer: This commentary represents the views of the author and may not necessarily reflect the views of ASCO or The ASCO Post.
