New studies highlight cancer inequities in hospice care, financial impacts

Analyses shared at ASCO annual meeting show lack of home hospice care for Medicaid patients during COVID-19; quantify financial hardships
A Black man wearing a face mask and a denim jacket stands in his apartment, looking at the camera.
The pandemic had a profound impact on cancer patients on Medicaid in Washington state. A Fred Hutch analysis found they shifted their place of death from hospitals to home without hospice care but that shift was not found for commercial insurance patients. “The number of Medicaid patients who died at home without hospice care increased by 11%," said researcher Dr. Laura Panattoni. "I was surprised to see that, and concerned.” Photo courtesy of Getty Images

Editor’s note: This story was originally published on June 4, 2021 when the researchers shared data from two studies at the annual meeting of the American Society of Clinical Oncology. It has been updated to reflect its recent publication in the Journal of Clinical Oncology. Click here to read more from their published findings.   

New findings from the health outcomes group at Fred Hutchinson Cancer Research Center point to yet another area where the COVID-19 pandemic adversely affected cancer patients: Many more Medicaid patients with cancer died at home without hospice care.

The study, presented virtually Friday at the annual meeting of the American Society of Clinical Oncology, was led by Dr. Scott Ramsey, director of the Hutchinson Institute for Cancer Outcomes Research. HICOR co-director Dr. Veena Shankaran also shared results from her recent analysis of the financial hardships that can follow a cancer diagnosis.

While ASCO 2021’s theme called for “Equity: Every Patient. Every Day. Everywhere,” both studies pointed to a sad lack of equity in current cancer care.

“Moving towards equity is a big lift,” said Dr. Laura Panattoni, Fred Hutch staff scientist and first author of the HICOR study on cancer patient care at end of life. “Our challenge is identifying what systemic features are the most problematic and where to make the changes.”

A profound impact

Panattoni, who presented the data at ASCO 2021, said HICOR researchers were concerned about COVID-19’s impact on cancer patients, especially those who might already be underserved.

“The pandemic dramatically reduced family access to hospitals and created new barriers to home hospice care,” she said. “We wondered if it had negatively impacted cancer patients’ place of death and end-of-life home-hospice support, especially with more vulnerable patients.”

As it turned out, the pandemic had a profound impact on these patients in Washington state, which HICOR continues to analyze.

“Medicaid patients shifted their place of death from hospitals to home without hospice care but that shift was not found for commercial insurance patients,” Panattoni said. “The number of Medicaid patients who died at home without hospice care increased by 11%. I was surprised to see that,  and concerned.”

A partial glimpse

Researchers used data on 610 cancer patients, gleaned from the Puget Sound Cancer Surveillance System, or CSS, linking it to insurance claims data from the commercial insurers Premera and Regence or Washington state Medicaid. According to HICOR data, Medicaid patients are more likely to be Black, have lung cancer and to live in low-resourced neighborhoods.

The study focused on just a portion of the state’s cancer patients: those aged 18 to 64 with solid tumor malignancies, such as breast, lung or colorectal cancers. They selected one group of patients who died between March and June in 2017 and 2019, pre-pandemic, and another group of patients meeting the study criteria who died between March and June 2020 after COVID-19 hit.

Then they dug into the data to see where the person died (at a hospital? at home with hospice? at home without hospice?); what kind of insurance they had; and whether it mattered one whit.

Since all the patients who died were under 65, nursing home deaths were excluded.

“The probability of dying in the hospital decreased by 12% for Medicaid patients and the probability of dying at home without hospice increased by 11%,” Panattoni said.

A photograph of Dr. Laura Panattoni wearing a striped blouse under a red sweater.

“Claims data gives you a high-level look at what happened. We can see the end result of structurally racist mechanisms and processes in society when we compare differences between Medicaid and commercially insured patients, like in this study.

— HICOR staff scientist Dr. Laura Panattoni

Photograph of cancer patient advocate Bridgette Hempstead
Cancer patient advocate Bridgette Hempstead regularly counsels people diagnosed with cancer through her nonprofit Cierra Sisters, many of whom use Medicaid insurance. "There’s a breakdown in the system with regard to Medicaid patients," she said. "Especially Black Medicaid patients. They’re not treated the same." Photo by Robert Hood / Fred Hutch News Service

Why no hospice care?

It’s a significant finding, the researcher said, because it shows the patient’s goals for end of life may not have been met and raises questions as to the circumstances of their death.

“A person’s place of death is an essential component of high quality and respectful cancer care,” Panattoni said. “The real goal is to ensure that patients, if they are going to die, have goal-concordant end-of-life care that meets their values and beliefs.”

One of her biggest concerns, she said, is that patients who died without hospice care may have died in pain.

“When I think of hospice care, I think of pain management,” she said. “That’s what I’m most concerned about. I hope their pain was adequately managed.”

Why did these patients not have hospice care? Panattoni said the researchers don’t have enough data to pinpoint specific reasons yet.

“There may have been a difference in the availability of hospice care for commercially insured patients versus those with Medicaid,” she said. “Maybe it was harder for these patients to access hospice or maybe they preferred to die in their own home, because of their beliefs. Or they didn’t want to engage with the health system at the end of their life.”

Patients may have even been denied care.

“We can’t tell,” she said. “We can only tell what was successfully billed. We don’t see denials or out-of-pocket costs if there were any.”

‘A breakdown in the system’

Fred Hutch research partner and patient advocate Bridgette Hempstead, founder of the cancer nonprofit Cierra Sisters, regularly works on behalf of cancer patients. She said Medicaid patients often receive “a totally different kind of care.”

These patients might be ignored by front desk people, she said. Or be released from a hospital before they’ve healed, forcing them to seek help — and hospitalization — elsewhere.

“One woman went to get medicine for her pain and they told her to take Tylenol,” Hempstead said. “She had stage 4 cancer. The medical community told her, ‘We don’t want you to get addicted to drugs, so take Tylenol.’ She was sent home and she died at home without hospice support.”

Hempstead said she wasn’t at all surprised by HICOR’s findings; she’s heard, lived and witnessed many such cases.

“There’s a breakdown in the system with regard to Medicaid patients,” she said. “Especially Black Medicaid patients. They’re not treated the same. It’s absolutely better in Washington than it is in other states, but it’s still flawed. It’s not an equitable health care opportunity.”

HICOR and its rigorous research provide a solid scientific base for the big policy lift necessary to make health care equitable.

“We don’t know why there were changes in the place of death but it’s really important to understand why this happened,” Panattoni stressed. “We need to understand the mechanisms driving these disparities, understand the reason for the shifts and separate out the short-term pandemic-related reasons.”

Next steps, she said, might be to talk to the patients and the families and the hospice providers and hear what their concerns and hypotheses are.

“Claims data gives you a high-level look at what happened,” she said. “We can see the end result of structurally racist mechanisms and processes in society when we compare differences between Medicaid and commercially insured patients, like in this study. The big challenge is going back upstream and identifying where those structurally racist policies and characteristics are impacting patients the most. it’s hard to know what creates the biggest barriers.”

“Claims data point to the issues,” she said. “It doesn’t give you the personal stories.”

Photograph of Dr. Veena Shankaran
Fred Hutch's Dr. Veena Shankaran just published research that showed within two years of their diagnosis, cancer patients experienced a significantly higher proportion of adverse financial effects including being sent to collections, tax liens, delinquent mortgage payments and even foreclosures. Photo courtesy of Seattle Cancer Care Alliance

Cancer’s financial hardships persist

A new analysis, led by HICOR co-director Dr. Veena Shankaran and just published in the Journal of Clinical Oncology, provides a closer look at specific financial hardships faced by cancer patients after a diagnosis.

“We investigated whether cancer patients are at an increased risk of new adverse financial events as measure by their credit reports,” Shankaran said.

The team identified over 63,000 cancer patients in the Hutch-based CSS cancer registry and matched them to similar individuals without cancer (i.e. controls) in the Washington state voter registration records. They then obtained credit reports for the entire cohort from a large national credit agency to evaluate the association between a cancer diagnosis and adverse financial effects.

In the study, these effects ranged from being sent to collections to having a tax lien put on your property to delinquent mortgage payments to repossessions and foreclosures.

What did they find?

Within two years of a cancer diagnosis, cancer patients experienced a significantly higher proportion of adverse financial effects compared to the non-cancer controls.

Cancer patients were twice as likely to have severe adverse financial effects, or AFEs, such as third-party collections or charge-offs (a creditor’s declaration of an unpaid debt) than those without cancer; they were also more likely to have tax liens, delinquent mortgage payments, repossession or foreclosure. A cancer diagnosis was also associated with an increased risk of past-due credit card payments.

Additional analysis also revealed a greater proportion of Black cancer patients experienced AFEs compared with non-Black cancer patients (15.2% vs. 4.2%) suggesting that the financial toll of cancer diagnosis on Black patients is higher than for other racial groups. Also, a significantly greater proportion of cancer patients than controls experienced AFEs at 24 months (18.2% vs. 10.5%) and each type of AFE was also significantly higher in cancer cases versus controls.

The researchers concluded that at two years past diagnosis, “cancer patients were 71% more likely to experience a severe AFE and 28% more likely to have past-due credit card payments than similar individuals without cancer.”

A subgroup of 5-year cancer survivors and matched controls showed a greater proportion of both groups experienced AFEs, with cancer patients remaining at increased risk (9.0% vs. 6.1%).

“These studies highlight the long-term financial toxicity people often experience after a cancer diagnosis,” said Shankaran. “And when events like this happen and are captured on someone’s credit reports, it can have serious and long-lasting consequences on that person’s financial status.”   

Shankaran went on to emphasize the importance of HICOR’s research overall to identify disparities in cancer care.

“Our findings underscore the need for interventions at the clinic, health system and policy level to mitigate financial burden in our patient population,” she said.

Diane Mapes is a staff writer at Fred Hutchinson Cancer Center. She has written extensively about health issues for NBC News, TODAY, CNN, MSN, Seattle Magazine and other publications. A breast cancer survivor, she blogs at and tweets @double_whammied. Email her at Just diagnosed and need information and resources? Visit our Patient Care page.

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