By Xingran Weng, DrPH
This article is based on the dissertation of Dr. Xingran Weng who defended his thesis at PSCOM on February 22, 2022.
Let’s think about a tough situation
Imagine an older individual has been diagnosed with cancer and moderate to severe Alzheimer’s disease (AD) (roughly 20% older persons with cancer diagnosed with dementia).1,2 The cancer prognosis is not optimal. Also, this individual has not yet discussed any treatment plans/goals with family members while the individual continuously exhibits various psychological and behavioral symptoms at home. Family members are frustrated and cannot properly handle this individual’s symptoms due to AD and cancer. This individual has been brought to the hospital more frequently lately. The medical team starts to encounter great difficulties when evaluating this person’s overall condition since AD has significantly compromised this individual’s cognition and communication skill. Consequently, appropriately planning for this person’s End-of-Life (EOL) care becomes critical yet extremely challenging for healthcare providers and family members.
Why End-of-Life care?
EOL care consists of medical, physical, social, emotional, and spiritual support that can be provided to individuals with terminal cancer to reduce symptoms and pain.3,4 When a person’s medical team deems the cancer is no longer manageable, additional curative and invasive treatment may be replaced by comfort-based supports based on the patient’s goals and preferences in order to avert excessive discomfort.5,6 Nevertheless, EOL care goals sometimes will be sub-optimal if aggressive healthcare services are requested (i.e., using ventilation/intubation or ER/ICU to prolong life expectancy, receiving invasive procedures/more potent medications to potentially cure cancer, and utilizing aggressive resuscitation).7 Receiving aggressive EOL care can significantly impair patients’ quality of life.8,9 Older persons with cancer are especially in a vulnerable position at EOL where their care preferences are often neglected because they are usually deemed less competent to make medical decisions due to their age and disease status.10 Also, the presence of other chronic conditions could complex those older individuals’ treatment outcome at the EOL.11
Alzheimer’s Disease and Related Dementias (ADRD) progressively and irreversibly compromises an individual’s memory, cognitive abilities, and physical functions with no effective treatment to cease its progression.12-14 As ADRD progresses, older persons with both cancer and ADRD start to face various challenges (less responsive to treatment and compromised communication skills) while planning for their EOL care (Figure 1).12,15-19 Eventually, the quality of their EOL care may be severely compromised.
Since EOL care is a critical component throughout the care continuum and associated with patients’ quality of life, I initially thought there should be plenty of scientific evidence of assessing the EOL care quality among individuals with both cancer and ADRD. However, scarce studies had focused on assessing the quality or patterns of EOL among that particular group. To further reveal the lack of attention of EOL care in the field of cancer care, the National Cancer Institute funded nearly $250 million (FY 2018) for studies on cancer screening, prevention, treatment, and survivorship, which was 19 times the spending on studies investigating the EOL care among persons with cancer.20 Although the Institute of Medicine has been advocating for the advancement of EOL care practice, the attention paid to examining the EOL care patterns has been fairly limited.4 Therefore, my dissertation research is both needed and timely since it will fill this knowledge gap.
What have we known thus far?
Many studies primarily focused on the survival and treatment differences among individuals with and without dementia (including ADRD).21-26 Based on those studies, individuals with ADRD were commonly found to have delayed cancer diagnosis with unclear staging records.1,22,23 Also, they were more likely to have sub-optimal survival compared to their dementia-free counterparts.21-26 In terms of cancer treatment choices and care patterns, existing evidence indicated that older persons with cancer and dementia utilized diagnostic procedures, surgeries, chemotherapies, or radiation therapies at an early stage significantly lesser than the dementia-free group.22,23 One study group also found that individuals with dementias were unlikely to receive guideline-concordant cancer care compared with individuals without dementias.24
What evidence has been missing?
A few studies have deduced that the alarming relationship of having a dementia diagnosis in addition to cancer is associated with inferior survival and poorly planned treatment decisions.1,22,23,27 However, all of those assessments or speculations stated prior were derived based on the early 2000s healthcare claims data. As for assessing the economic characteristics of EOL care, previous healthcare service studies primarily focused on cost in relation to certain cancer types while ADRD was not considered as a separate independent factor in those estimations.27-30 Thus, the assessment of EOL care expenditures for older persons with cancer and ADRD is missing from the existing literature.
Therefore, the lack of pertinent research with respect to the substantial patient population (co-presence of cancer and ADRD) increase has become a knowledge gap in advancing patient care.2,28 My dissertation research filled this gap by assessing EOL care among older Medicare beneficiaries with breast-female only, lung, prostate, or colorectal cancer. My research answered two major questions: (1) What are the characteristics of aggressive EOL care utilization patterns in Medicare beneficiaries with both cancer and ADRD compared with those with just cancer? (2) Is there any EOL care cost difference among Medicare beneficiaries with cancer and ADRD compared with their non-ADRD counterparts?
How did I explore this?
To be consistent with current healthcare service research, my dissertation conducted two retrospective cohort studies (N Cohort I=135,380; N Cohort II=86,396) to assess the patterns of aggressive EOL care and estimating the Medicare expenditures of EOL care among beneficiaries (older than 65) with cancer and ADRD. I took advantage of the rich healthcare utilization record and cancer-related characteristics featured in the Surveillance, Epidemiology, End Results-Medicare (SEER-Medicare) database from 2004 to 2016.
To evaluate the EOL care patterns among beneficiaries with cancer and ADRD, I adopted six indicators to assess the aggressiveness of EOL care.29-31 The six specific factors are: (1) more than one ER visit during the last 30 days of life, (2) more than one inpatient admission during the last 30 days of life, (3) at least one ICU stay during the last 30 days of life, (4) death during inpatient admission, (5) initiation of hospice within 3 days of life, and (6) receiving any chemotherapy within 14 days of life.
For estimating the EOL spending paid by Medicare, the service dates and the payment from Medicare were captured from the following claims files: inpatient, outpatient, provider, hospice, home health care, and durable medical equipment.32-37 The spending of those different types of claims were summarized into: (1) monthly Medicare spending during the twelve months EOL period, (2) the total EOL Medicare spending of the twelve-month period, and (3) the total expenditures of each service type (i.e., inpatient, skilled nursing facility, outpatient, home health, durable medical equipment, and hospice) for the last twelve months.32-39
What did I find?
From 2004 to 2016, at least half of Medicare beneficiaries who had cancer had received a form of aggressive EOL care. In comparison with beneficiaries with cancer only, older persons with both ADRD and cancer had a slightly lower percentage of receiving aggressive EOL care throughout the years (Figure 2). From the multivariable logistic regression model, having ADRD attenuated older persons with cancer’s odds of utilizing any aggressive EOL care compared to those without ADRD.
When examining the cost of EOL care, I found the majority of the expenditures incurred within the last six month of life (Figure 3). In comparison to those without ADRD, beneficiaries with both cancer and ADRD resulted in having slightly higher Medicare expenditures during the last twelve-month of life ($64,883 vs. $64,521). Specifically, greater expenditure was incurred on inpatient (6%), skilled nursing facility (126%), home health (42%), and hospice (24%) care among beneficiaries with both conditions in contrast with those without ADRD. After estimating the expenditure through statistical models (Generalized Estimating Equation Model and Generalized Linear Model), it was revealed cancer patients with ADRD had higher monthly expenditure, which resulted in higher in total expenditures.
Where will the findings lead us in public health and clinical care?
Featured studies from my dissertation revealed a relatively recent aggressive EOL care pattern and the financial burden for Medicare to pay for the EOL care among beneficiaries with both cancer and ADRD compared with those who did not have ADRD.
Two major future research directions could be carried out to further expand my dissertation’s impact in public health and clinical care. First, individuals diagnosed with subsequent ADRD after cancer have a higher risk of utilizing aggressive EOL care and spend more Medicare resources. Future studies could account for the sequence of ADRD and cancer diagnoses; then, evaluate its impact on EOL care patterns. Second, due to the limitation of healthcare claims data, future studies could deploy a mixed-method approach that combines both quantitative and qualitative data (e.g., family member’s interview, healthcare providers’ progress notes, palliative care consultation notes, and other EOL care program documents, etc.) together to evaluate the overall quality of EOL care.
Through conducting the proposed future studies in the field of EOL care, I am optimistic and confident that more health service researchers and clinicians will join this changing effort to advance EOL care quality while racing to find the cure of ADRD.
- Little is known about the quality of End-of-Life among cancer patients with Alzheimer’s Disease and Related Dementias (ADRD).
- From my study, cancer patients with ADRD utilized aggressive EOL care less; however, they tended to spend slightly more Medicare resources within the last twelve-month of life.
- Future efforts are needed to properly control the relative high prevalence of aggressive EOL care among older cancer patients and reduce the risk of the co-presence of cancer and ADRD on exacerbating the financial burden on Medicare.
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