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America’s Head Count Begins

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Census 2020 supporters on parade in San Francisco's Chinese new year parade
A Census 2020 banner is marched down a San Francisco street during the Chinese New Year Parade in February. Photo: Yichuan Cao / Sipa USA / AP Images

The federal government is inviting American households to participate in the 2020 census and provide demographic information online, by phone, or through the mail. The decennial head count is critically important because census data determines how many members each state sends to the US House of Representatives, shapes congressional redistricting, and guides the allotment of federal funds to state and local governments.Essential Coverage

The census is required by the US Constitution, and its data are used to plan roads, hospitals, schools, emergency services, and many other public investments. This year’s $2 billion census project is the largest ever undertaken and will involve millions of temporary workers and a large marketing campaign.

However, significant barriers could prevent a fair and accurate census this year — especially in California. Although California has taken many steps to ensure an accurate count, the state “is especially vulnerable to an undercount because of its large immigrant population and other hard-to-reach people,” Judy Lin wrote in CalMatters.

State officials have responded to this challenge with an unprecedented investment in outreach efforts. Last year, Governor Gavin Newsom appointed Secretary of State Alex Padilla to chair the California Complete Count Committee. Padilla told the Mercury News the state allocated about $187 million — nearly 95 times its budget for the 2010 census — to conduct public outreach.

Here’s what you need to know about the 2020 US Census and its importance to California:

The Online Census

The 2020 federal census is the first to be conducted primarily online. Between March 12 and March 20, all households will receive letters in the mail inviting them to fill out a census questionnaire at my2020census.gov. The letters include information about answering questions by phone. My2020census.gov will be open to the public through July 31, and the questionnaire is available in 13 languages: English, Spanish, Chinese, Vietnamese, Korean, Russian, Arabic, Tagalog, Polish, French, Haitian Creole, Portuguese, and Japanese.

By the end of April, households that have not completed the census will receive written reminders. Households that have not responded by early May will receive an in-person visit from a census worker. “The federal government has hired thousands of people to follow up with people who don’t respond online, by phone, or mail, and to count homeless people, college students, and other hard-to-reach groups,” Sarah D. Wire reported in the Los Angeles Times. “Federal law actually requires you to respond to the census.”

For most people, completing the census questionnaire will take no more than 10 minutes. It includes basic questions for each person living in the household — for example, name, sex, birthday, and race. The questionnaire does not inquire about citizenship status. The Trump administration attempted to add a citizenship question to the census, but the US Supreme Court blocked it last summer after California and other states brought a lawsuit.

Under federal law, the Census Bureau must keep personal data confidential. Identifying information taken during the census cannot be shared with law enforcement, immigration officials, or the courts, Wire reported.

The Stakes for California

California now holds 53 of the 435 seats in the US House of Representatives — far more than any other state. “If the census does a poor job of reaching hard-to-count populations and immigrant communities, it could miss more than 1.6 million [California] residents — and the state could easily lose a seat” or more, warned the Public Policy Institute of California (PPIC). Because census data are the basis for redrawing congressional districts, an accurate count is needed to ensure that communities are represented fairly.

Census data also guides the government’s allocation of $1.5 trillion in federal funds to state and local governments. More than 70 federal programs — including Medicaid, Medicare, the Children’s Health Insurance Program, and the Special Supplemental Nutrition Program for Women, Infants, and Children — use census data and population counts as part of their funding formulas, according to the League of California Cities.

California receives more than $170 billion in federal funds based on its population, Lin wrote. An undercount would put funding for some programs at risk.

Hard-to-Count Communities

California’s large and diverse population presents major obstacles to getting an accurate census count. About 75% of residents are considered hard to count by experts, and an interactive map by PPIC highlights California’s hard-to-count communities.

The debate over inclusion of the citizenship question on the survey last year stoked confusion and fear in immigrant communities. Although the question was thrown out by the high court, some Californians may still be reluctant to share information with the government. About five million California residents are noncitizens. That’s roughly 13% of the state population, the highest proportion of any state.

California is home to more than 151,000 people experiencing homelessness, according to the US Department of Housing and Urban Development’s 2019 point-in-time count (PDF). Although the Census Bureau has procedures (PDF) that “count people outdoors, where they receive services, and at other locations where they are known to sleep,” this population is likely to be undercounted. As Tess Thorman and Vicki Hsieh wrote on the PPIC Blog, “People experiencing homelessness can be hard to find — they tend to move around a lot, and at any given time, they might be in a shelter, in a car, outdoors, or couch surfing with family and friends.”

Overcoming Risks

Other barriers could affect the accuracy of the census at the national level. In February, the Government Accountability Office (GAO) released a report highlighting the Census Bureau’s cybersecurity and hiring risks. After the bureau discovered that “its main IT system for collecting online census responses was not able to allow enough users to fill out census forms at the same time ‘without experiencing performance issues,’” bureau officials decided to switch to a backup system with greater capacity, NPR’s Hansi Lo Wang reported. However, the GAO warned that making last-minute fixes without extensive testing could introduce new risks that would be added to “significant cybersecurity challenges.”

The GAO also flagged hiring and partnership risks. A low unemployment rate has made it difficult for the Census Bureau to fill the 2.6 million temporary census jobs, and the bureau is behind in recruiting national and community partners to help the campaign.

The Republican National Committee added to the challenges by sending out misleading mailers labeled “2020 Congressional District Census,” Wire reported in a separate Los Angeles Times article. Although the top of the mailer states that it is “commissioned by the Republican Party,” critics complained that some residents might mistake the mailer for the official census. US Representative Katie Porter (D-Irvine) said she has heard from constituents confused by the mailer. She told Wire she feared people would “toss their actual census envelope because they’ve already filled this one out.”

The spread of the novel coronavirus disease known as COVID-19 could hamper census workers’ efforts, Sarah Holder and Kriston Capps reported for CityLab. Door-to-door visits are essential to reach hard-to-count communities. However, the US Centers for Disease Control and Prevention has issued guidance intended to slow transmission of the virus by limiting social contact. For census workers, it’s going to be a balancing act.

“Operations for the 2020 Census and our ongoing household surveys have procedures built in that specifically anticipate epidemics and pandemics, and we will continue to work with the relevant authorities to keep those up to date,” said Census Bureau Director Steven Dillingham in a statement.

Becerra: Don’t Count Out California

California Attorney General Xavier Becerra played a key role in blocking inclusion of the citizenship question in the census. When the Supreme Court ruled against the question, Becerra said in a statement, “In 2020, with this census, 40 million Californians — young and old, rich and poor, citizen and immigrant — will have a chance to lift their voices together to declare: We’re here, we count, and none of us will be pushed into the shadows.”

California residents should complete the census questionnaire online, by phone, or by mail before July 31. Community groups like the Latino Community Foundation, NALEO Educational Fund, and the Coalition for Humane Immigrant Rights can provide assistance and additional information about the census.

Have you read anything about the 2020 census amid the coronavirus coverage? Tweet at me with #EssentialCoverage or email me.

The post America’s Head Count Begins appeared first on California Health Care Foundation.

Sacrifices Californians Make Together to Slow Spread of Coronavirus Are Worth It

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Martin Luther King Jr. Elementary School sign reads "Monday 3/16 School Closed Until Further Notice"
A Los Angeles elementary school that was shut down to prevent spread of the novel coronavirus that causes COVID-19 disease. Photo: Jevone Moore / Image of Sport via AP

This article was published today by CalMatters and is reprinted with permission.

We have entered an important new chapter in the response to the COVID-19 pandemic: After a week filled with school closures and the cancellation of major public events of all kinds, Congress and President Donald Trump are hopefully close to a deal to address the spread of the dangerous coronavirus.

This clear-headed collaboration by our political leaders is welcome for the immediate relief it will bring and because it restores — for at least a moment — the primacy of public health over hyper-partisan politics.

COVID-19 hit us where we are vulnerable. Unlike the flu, there is no community immunity to this virus. There is no treatment and no vaccine. The incubation period is long, and the virus is very contagious. People are being infected and infecting others faster than the system can currently respond.

Politics may be why testing didn’t ramp up sooner. That has to stop immediately. Without widespread testing, our health care system is basically flying blind. It’s a big reason we have to take such dramatic action to contain any possible spread right now. And going forward, it is imperative that we maintain a shared, nonpartisan interest in getting the epidemiological facts that testing will reveal.

Once testing is expanded, we will better understand case fatality rates and where to target public health interventions. Having that data will take us out of the “unknown phase” we’re trapped in and enable leaders at all levels to unify around sound business decisions. It will also instill confidence and consistency to recommendations about public participation.

Far Worse Than Seasonal Flu

COVID-19 is conservatively estimated to be 3 to 10 times more fatal than seasonal flu. When you look at the mortality rates in China and Europe, people who also have conditions like diabetes, hypertension, and coronary artery disease seem to be at much greater risk of developing a severe form of this infection. These are very common conditions in the United States. It means that the community at risk from exposure is large.

This is why it is critically important to hold down the spread of this virus. Though the risk is uneven, the responsibility must be shared.

It’s true that the steps being asked of so many families and organizations may feel drastic. Closing schools, upending normal business routines, and canceling events are crucial to local economies and communities. These measures have already brought upheaval and changed the daily lives of tens of millions of Americans.

It’s important to remember that these actions are not excessive — they are extremely prudent. They will buy us time, and that is perhaps our best weapon against this fast-moving virus.

Reaching the Health Care System’s Limits

Our health care system is technologically advanced, but it is also bound by physical limitations. There are only so many health professionals, beds, ventilators, and masks. The sacrifices that families, schools, businesses, and communities are making to slow down the spread of COVID-19 protect the health of the people who may need advanced treatment. Every time you wash your hands, practice social distancing, or stay home if you are sick, you are saving lives. And we’re counting on our friends, neighbors, and even competitors to do the same.

COVID-19 has no party, no race, and no citizenship. Health care is a basic need, as is our core public health infrastructure and the need for paid leave when workers get sick. They should be universal, not only for the health of those who are our most vulnerable, but for the health of everyone else we know and all the people in the widening concentric circles to which we connect. When some people are left out of the health system, all of us face a greater risk.

California has been leading the way toward getting everyone health insurance coverage — and expanding access to care. As this virus spreads, this goal has never been more important.

Our nation has been vulnerable to COVID-19 in part because of the divisions that have plagued us. By working together — and with our shared sacrifice — we can rebuild our immunity and strengthen the foundation of a healthier society.

The post Sacrifices Californians Make Together to Slow Spread of Coronavirus Are Worth It appeared first on California Health Care Foundation.

Ten Years After: The ACA’s Success in Five Charts

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President Obama signing the Affordable Care Act in front of a crowd of legislators and citizens.
At a historic signing ceremony in the East Room of the White House on March 23, 2010, President Barack Obama approves the Affordable Care Act surrounded by congressional and administration officials, advocates, and Vice President Joe Biden. Photo: J. Scott Applewhite / Associated Press 

President Barack Obama made history on March 23, 2010, when he signed into law the landmark Affordable Care Act (ACA), transforming the health care landscape in California. Here are a few examples of the health care law’s impact:

  • The number of uninsured Californians dropped by 3.7 million — the biggest decline of any state.
  • As the uninsured rate fell across all groups, racial disparities in coverage declined. In California, there is no longer a statistically significant difference in the uninsured rate among whites, Blacks, and Asians. That is a major shift from before the ACA was fully implemented. Among Latinos, however, the uninsured rate remains higher compared to other groups.
  • Because the ACA bars insurers from denying coverage, 16.8 million Californians who have preexisting conditions are protected from ever being rejected by a health insurer.
  • At California hospitals between 2013 and 2017, uncompensated care costs plummeted by $1.7 billion.
  • Research estimates that the ACA’s Medicaid expansion saved 19,200 lives nationwide. Research also shows how the expansion improved mortality rates for infants, new mothers, and people with cardiovascular diseases and reduced consumers’ medical debt.

From the beginning, California embraced the ACA, taking full advantage of the opportunities and tools the law provided to expand coverage. In the last few years, California has built on the ACA’s solid foundation, expanding the state Medicaid program, Medi-Cal, to all children and young adults with low incomes regardless of immigration status, and providing additional subsidies to help people afford coverage on the state’s ACA health insurance exchange, Covered California.

Lots More to Do

There’s more to be done, of course. About three million Californians still remain uninsured, and health care costs are still too high and rising too fast.

COVID-19 is a stark reminder that when it comes to health, we are all in this together. In this moment, it’s clear how all Californians benefit when more Californians have the coverage and access to care they need. As the ACA turns 10, CHCF celebrates the significant progress it has made for California, and continues, with our partners, the unfinished work of achieving universal coverage.

Download and share these cards documenting the ACA’s success in California on social media using the hashtag #ACA10, and don’t forget to share your own ACA story too.

Learn more about the ACA’s impact from Health Affairs and other CHCF publications.

The post Ten Years After: The ACA’s Success in Five Charts appeared first on California Health Care Foundation.

The Role of Palliative Care in a COVID-19 Pandemic

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Infectious Disease doctors in full protective gear, tend to elderly patient in Intensive Care Unit.
Staff in protective gear tend to an elderly COVID-19 patient in the intensive care unit at Poliambulanza hospital in Brescia, Italy. Photo: Claudio Furlan / LaPresse via ZUMA Press

In this time of the COVID-19 pandemic, health care systems and health care professionals are stressed and bracing for or already managing an influx of affected patients. The coronavirus presents a severe acute care crisis of unknown duration, in which potentially hundreds of thousands of people may get sick, some critically, and tens of thousands may die.

In this context, the usual concerns of palliative care — quality of life, discernment of patient goals, advance care planning, pain and symptom management, and support for caregivers over protracted trajectories — seem to pale in comparison. And yet, I would argue that palliative care has never been more important.

Those who are elderly, frail, and/or with underlying chronic or serious illness are most at risk from the novel coronavirus. These are palliative care’s core patient populations. Utilizing the unique skills and strengths found in palliative care must be part of the response.

Consider that:

  • While the World Health Organization is reporting the average death rate from COVID-19 is somewhere between 2% and 4%, the death rate among elderly patients is estimated at 15% to 22%. Managing pain and symptoms, ensuring comfort in dying, and supporting families and providers are what palliative care does every day.
  • An acute infection may be what collapses the “house of cards” for a patient with serious or life-limiting illness, sending such a person into an imminent end-of-life scenario. Rapid reassessment of a patient’s goals and alignment with treatment plans are among palliative care’s stellar skills.
  • If resources are stretched, an elderly patient with end-stage chronic obstructive pulmonary disease experiencing his fourth or fifth exacerbation may not be prioritized for ICU care and instead will need palliative care. If ventilators and ICU beds are in short supply, hospitals will have to triage cases and communicate to patients and families an alternative path. Palliative care can do this.
  • Family and authorized proxies may be prohibited from visiting acutely ill and chronically ill patients in the hospital and long-term care residents in nursing facilities. Informed and shared decisionmaking may require long-distance or convoluted conversations in the absence of clear information. Maintaining grace, helping patients and families to understand and decide, and coordinating care and providers are all in palliative care’s wheelhouse.
  • Nurses, physicians, and their colleagues may be overworked and at risk. Others may be sent home to sit out two weeks, knowing their patients and colleagues need them. Moral distress, grief, and frustration will fray nerves and relationships. Spiritual care, team support, and guidance on self-care are palliative care’s special sauce.

In this time, palliative care is just as critically needed as fluids, fever reducers, and respirators. We know the strength and extraordinary human kindness and caring that palliative care professionals live every day, in every interaction with patients, with families, with colleagues, and communities. Their role in the time of COVID-19 is to keep the “care” in health care, even as systems, patients, and providers are under siege.

This article is reprinted with permission from the California State University Shiley Institute for Palliative Care. It was first published on March 9.

The post The Role of Palliative Care in a COVID-19 Pandemic appeared first on California Health Care Foundation.

The Affordable Care Act Turns 10

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House Leader Pelosi And Senator Schumer Hold News Conference On Health Care Coverage Of Pre-Existing Conditions
House Speaker Nancy Pelosi (D-California), right, holds a photo during a July 9, 2019, news conference on protections for people with preexisting conditions who would be affected if the ACA is struck down by the Supreme Court. Photo: Andrew Harrer / Bloomberg via Getty Images

On this day 10 years ago, President Barack Obama signed the Affordable Care Act (ACA) into law. Since then, the ACA has been folded into American life in myriad ways, reducing the number of people who are uninsured to historically low levels.

The health care law has protected people with preexisting health conditions, reduced racial disparities in coverage, and improved maternal and infant health — all while surviving multiple attempts to repeal and replace it.

To celebrate the ACA’s 10th anniversary, let’s take a look at some of its accomplishments and why they’re so important in the face of a pending Supreme Court case shadowed by the COVID-19 pandemic.

Huge Coverage Gains

More than 20 million people have gained health coverage thanks to ACA policies that shored up the individual market and expanded Medicaid. According to the Center on Budget and Policy Priorities (CBPP), “about half of the increase reflects gains in private coverage, due to ACA policies such as subsidies for individual market coverage, reforms to the individual insurance market, letting young adults stay on their parents’ plans, and the individual mandate requiring most people to have coverage or pay a penalty.” The other half comes from expanded eligibility for enrollment in Medicaid.

Researchers from the University of Michigan analyzed coverage data from the Census Bureau’s American Community Survey and found that insurance coverage has increased for all racial and ethnic groups under the ACA. Racial disparities in health insurance coverage, which are known to contribute to reduced access to care and worse health outcomes, have decreased, the researchers reported in Health Affairs. Nonetheless, Black people and Latinos nationwide remain less likely than white people to be insured.

Before the ACA was implemented, health insurers could deny coverage or charge higher premiums to people with preexisting conditions. Today, about 133 million nonelderly Americans (PDF) with preexisting conditions — which include common problems like high blood pressure, behavioral health issues, and even pregnancy — are protected from discrimination based on health status and medical history.

The Golden State — A Leader in Implementation

California embraced the ACA from the start, when Governor Arnold Schwarzenegger was in his second term. Deborah Kelch, former executive director of the Insure the Uninsured Project, was a state legislative staffer during California’s implementation of the ACA. “There was a lot of desire and effort in the Schwarzenegger administration and the legislature to do something like the ACA,” she told Michael Hiltzik in the Los Angeles Times. “So when the ACA came, we were particularly well situated to take advantage of it and go forward.”

Thanks to the state’s efforts, the “share of Californians with no health insurance dropped nearly 10 percentage points, hitting a historic low of 7.3% in 2016,” the Public Policy Institute of California reported. California Health Interview Survey data show that there is no longer a statistically significant difference in the uninsured rates of white, Black, and Asian / Pacific Islander Californians. However, Latinos continue to experience a higher uninsured rate than other racial and ethnic groups.

Better Coverage Means Better Care

A growing body of evidence suggests that the coverage gains made under the ACA have resulted in better access to care for people who are insured. Between 2010 and 2018, the share of adults age 19 to 64 who skipped a test or treatment fell 24%, and the share of those who didn’t visit a provider when needing care decreased 19%, according to CBPP.

A KFF literature review of more than 400 studies found that “most research demonstrates that [the ACA’s] Medicaid expansion has improved access to care, utilization of services, the affordability of care, and financial security among the low-income population.”

Other studies found a positive association between increased insurance coverage under the ACA and the likelihood of getting preventive care (e.g., blood pressure checked), early-stage cancer diagnosis, and treatment for substance use disorder.

And let’s not forget the National Bureau of Economic Research study that found “substantially reduced mortality rates” among older, low-income adults in the states that expanded Medicaid. “Death rates dropped in the states that expanded Medicaid, saving 19,200 lives over four years,” Annie Lowrey reported in the Atlantic. “Had all 50 states expanded the program, 15,600 further deaths would have been averted.”

Gains Need to Be Protected

In a recent video released by the health care advocacy group Protect Our Care, former president Obama marked the ACA’s 10th anniversary by highlighting some of its greatest successes, saying, “That’s something worth celebrating, but it’s also progress worth protecting.”

This progress is all the more precious amid the coronavirus outbreak, which is mercilessly exposing the weaknesses in the US health care system and raising the importance of getting to universal coverage. As CHCF President and CEO Sandra R. Hernández, MD, wrote in a commentary published in CalMatters, “COVID-19 has no party, no race and no citizenship. Health care is a basic need, as is our core public health infrastructure and the need for paid leave when workers get sick. . . . When some people are left out of the health system, all of us face a greater risk.”

This ACA milestone holds special significance as the Supreme Court prepares to hear oral arguments in the fall in a lawsuit challenging the landmark law. California has taken many steps to defend against political actions to repeal and replace the ACA, but this lawsuit is a “dark cloud,” according to Hiltzik, who pointed out that “an adverse ruling by the Supreme Court would eliminate funding for the Medicaid expansion and premium subsidies.”

California “could never counter taking away that money,” Peter Lee, executive director of Covered California told Hiltzik. “Medicaid expansion and premium subsidies would go away, as would protection for preexisting conditions, as would tens of billions of dollars for preventive health and public health, which is relevant to the current virus.”

Have you downloaded CHCF’s data cards documenting the ACA’s success in California? Tweet at me with #EssentialCoverage or email me.

The post The Affordable Care Act Turns 10 appeared first on California Health Care Foundation.

Why Isn’t the Country Getting the Physicians We Need?

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Letter from The National Matching Program
Photo: Leslie Walker

Every year on the third Friday in March, tens of thousands of graduating medical students find out where they will continue their training by working as medical residents. The US spends close to $20 billion each year to fund those residencies, with 20% of that money going to programs in New York State alone. But now, as the coronavirus pandemic underscores the importance of a physician workforce that can deliver health care services, why isn’t the country getting the doctors we need?

The inability of states to produce the physician workforces they need can lead to delays in routine care, especially in rural and underserved communities, as well as long wait times for specialists. Research shows, for instance, that people who live in rural areas die younger from heart disease, cancer, and stroke.

Listen to the full episode of Tradeoffs below or read the transcript, and visit the Tradeoffs website for more information.

Tradeoffs: Match DayMarch 20, 2020

Cohosts

Anupam Jena, MD, PhD, associate professor of health care policy at Harvard Medical School

Dan Gorenstein, Health care journalist and executive producer of Tradeoffs

Guests

Candice Chen, MD, MPH, associate professor in the Department of Health Policy and Management at George Washington University

Ted Epperly, MD, president and CEO of the Family Medicine Residency of Idaho

Atul Grover, MD, PhD, executive vice president of the Association of American Medical Colleges

The California Health Care Foundation is a cofunder of Tradeoffs.

The post Why Isn’t the Country Getting the Physicians We Need? appeared first on California Health Care Foundation.

Finding the Right Words About COVID-19

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Doctor talking on mobile phone
Photo: Jose Luis Pelaez / Getty Images

Health care organizations in California and around the US are working incredibly hard to prepare for or respond to a surge of patients suffering from symptoms related to COVID-19. Appropriately, preparation has focused on trying to ensure adequate numbers of health care professionals and sufficient supplies and equipment in the right places at the right times as the demand grows.

That focus on numbers and logistics is essential. Also important but perhaps less widely acknowledged is the need to prepare our clinical workforce for the types of circumstances found in Washington and Italy and now emerging in New York, California, and other hot spots we read about every day. Clinicians and staff — in skilled nursing facilities, hospitals, and beyond — face the prospect of caring for increasing numbers of very sick people, some of whom will not recover. Talking with these patients and their loved ones with compassion and clarity about what is happening, what to expect, and what their options are is extremely important. To many clinicians, it is a daunting prospect.

Support is available: VitalTalk, a nonprofit organization dedicated to helping every clinician develop communication skills for serious illness, has created “COVID-Ready Communication Skills,” a customized, practical, specific set of tips and scripts for all clinicians caring for patients caught up in the COVID-19 crisis. CHCF and VitalTalk encourage the health care community to share these resources far and wide. Printable versions in multiple language are available online.

For those interested in online training for supporting people with serious illness, resources include the California State University Shiley Institute for Palliative Care, which has just made 20 self-paced online courses available for free until June 30, and the Center to Advance Palliative Care.

Additional COVID-19 tools and resources addressing communications, symptom management, and other issues are available on the Center to Advance Palliative Care’s COVID-19 Response Resources.

Thank you to Tony Back, MD, co-founder of VitalTalk, for permission to reprint this content, and to Dr. Back and his many collaborators noted at the bottom of this post for developing this thoughtful, practical guide.


VitalTalk Response Tips

Contents

ScreeningWhen someone is worried they might be infected

PreferencingWhen someone may want to opt out of hospitalization

TriagingWhen you’re deciding where a patient should go

AdmittingWhen your patient needs the hospital, or the ICU

CounselingWhen coping needs a boost, or emotions are running high

DecidingWhen things aren’t going well, goals of care, code status

ResourcingWhen limitations force you to choose, and even ration

NotifyingWhen you are telling someone over the phone

AnticipatingWhen you’re worrying about what might happen

GrievingWhen you’ve lost someone

New talking maps for contingency and crisisProactive planning, resource limits, the last family call

Using These Tips

This is a super-concentrated blast of tips focused on COVID-19. We’ve pared away all the usual educational stuff because we know you’re busy. If you want more, check out VitalTalk’s videos and talking maps on fundamental communication skillsfamily conferences, and goals of care.

As the pandemic evolves, the caseload in your region will determine whether your clinic or hospital or institution is “conventional” mode (usual care), “contingency mode” (resources stretched, although care functionally close to usual), or “crisis” mode (demand outstrips resources). Most of the tips here are for conventional or contingency mode. If your region moves to crisis standards (PDF), how medicine is practiced will change dramatically — triage decisions will be stark, and choices will be limited. If needed, future versions of this doc will shift towards crisis. For now, please note that the crisis mode tips are marked [C] and should be reserved for a crisis designated by your institution. And remember that even in a crisis, we can still provide compassion and respect for every person.

Some of the communication tips in this document depict ways to explain resource allocation to a patient or family or caregiver. However, note that decisions about how resources are allocated — which criteria are used or where lines are drawn — should happen at the regional or state or country level. Rationing decisions should not be made at the bedside. In these tips, we steer away from complex discussions about rationing, and use language that is for lay people rather than for ethicists.

You Can Pitch In

Show this to the people you work with. Volunteer to edit so we can incorporate feedback in real time. Translate this into another language. Don’t just spread worries about how bad things will get — be the change you want to see. You can get in touch with us at tonyback@uw.edu or info@vitaltalk.org.

Screening — When Someone Is Worried They May Be Infected

What they say What you say
Why aren’t they testing everybody? We don’t have enough test kits. I wish it were different.
Why do the tests take so long? The lab is doing them as fast as they can. I know it’s hard to wait.
How come the basketball players got tested? I can imagine it feels unfair. I don’t know the details, but what I can tell you is that was a different time. The situation is changing so fast that what we did a week ago is not what we are doing today.

Return to contents

Preferencing — When Someone May Want to Opt Out of Hospitalization

What they say What you say
I am worried about this new virus. What should I be doing? You are right to be concerned. Here’s what you can do. Please limit your contact with others — we call it social distancing. Then you should pick a person who knows you well enough to talk to doctors for you if you did get really sick. That person is your proxy. Finally, if you are the kind of person who would say, no thanks, I don’t want to go to the hospital and end up dying on machines, you should tell us and your proxy.
I realize that I’m not doing well medically even without this new virus. I want to take my chances at home / in this long-term care facility. Thank you for telling me that. What I am hearing is that you would rather not go to the hospital if we suspected that you have the virus. Did I get that right?
I don’t want to come to the end of my life like a vegetable being kept alive on a machine [in a long-term care facility or at home]. I respect that. Here’s what I’d like to propose. We will continue to take care of you. The best case is that you don’t get the virus. The worst case is that you get the virus despite our precautions — and then we will keep you here and make sure you are comfortable for as long as you are with us.
I am this person’s proxy / health care agent. I know their medical condition is bad — that they probably wouldn’t survive the virus. Do you have to take them to the hospital? It is so helpful for you to speak for them, thank you. If their medical condition did get worse, we could arrange for hospice (or palliative care) to see them where they are. We can hope for the best and plan for the worst.

Return to contents

Triaging — When You’re Deciding Where a Patient Should Go

What they say What you say
Why shouldn’t I just go to the hospital? Our primary concern is your safety. We are trying to organize how people come in. Please fill out the questions online. You can help speed up the process for yourself and everyone else.
Why are you keeping me out of the hospital? I imagine you are worried and want the best possible care. Right now, the hospital has become a dangerous place unless you really, really need it. The safest thing for you is to ______.

Return to contents

Admitting — When Your Patient Needs the Hospital or the ICU

What they say What you say
Does this mean I have COVID-19? We will need to test you with a nasal swab, and we will know the result by tomorrow. It is normal to feel stressed when you are waiting for results, so do things that help you keep your balance.
How bad is this? From the information I have now and from my exam, your situation is serious enough that you should be in the hospital. We will know more in the next day, and we will update you.
Is my grandfather going to make it? I imagine you are scared. Here’s what I can say: because he is 90, and is already dealing with other illnesses, it is quite possible that he will not make it out of the hospital. Honestly, it is too soon to say for certain.
Are you saying that no one can visit me? I know it is hard to not have visitors. The risk of spreading the virus is so high that I am sorry to say we cannot allow visitors. They will be in more danger if they come into the hospital. I wish things were different. You can use your phone, although I realize that is not quite the same.
How can you not let me in for a visit? The risk of spreading the virus is so high that I am sorry to say we cannot allow visitors. We can help you be in contact electronically. I wish I could let you visit, because I know it’s important. Sadly, it is not possible now.

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Counseling — When Coping Needs a Boost, or Emotions Are Running High

What they say What you say
I’m scared. This is such a tough situation. I think anyone would be scared. Could you share more with me?
I need some hope. Tell me about the things you are hoping for. I want to understand more.
You people are incompetent! I can see why you are not happy with things. I am willing to do what is in my power to improve things for you. What could I do that would help?
I want to talk to your boss. I can see you are frustrated. I will ask my boss to come by as soon as they can. Please realize that they are juggling many things right now.
Do I need to say my goodbyes? I’m hoping that’s not the case. And I worry time could indeed be short. What is most pressing on your mind?

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Deciding — When Things Aren’t Going Well, Goals of Care, Code Status

What they say What you say
I want everything possible. I want to live. We are doing everything we can. This is a tough situation. Could we step back for a moment so I can learn more about you? What do I need to know about you to do a better job taking care of you?
I don’t think my spouse would have wanted this. Well, let’s pause and talk about what they would have wanted. Can you tell me what they considered most important in their life? What meant the most to them, gave their life meaning?
I don’t want to end up being a vegetable or on a machine. Thank you, it is very important for me to know that. Can you say more about what you mean?
I am not sure what my spouse wanted — we never spoke about it. You know, many people find themselves in the same boat. This is a hard situation. To be honest, given their overall condition now, if we need to put them on a breathing machine or do CPR, they will not make it. The odds are just against us. My recommendation is that we accept that he will not live much longer and allow him to pass on peacefully. I suspect that may be hard to hear. What do you think?

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Resourcing — When Limitations Force You to Choose, Even Ration

What they say What you say, and why
Why can’t my 90-year-old grandmother go to the ICU? This is an extraordinary time. We are trying to use resources in a way that is fair for everyone. Your grandmother’s situation does not meet the criteria for the ICU today. I wish things were different. [C]
Shouldn’t I be in an intensive care unit? Your situation does not meet criteria for the ICU right now. The hospital is using special rules about the ICU because we are trying to use our resources in a way that is fair for everyone. If this were a year ago, we might be making a different decision. This is an extraordinary time. I wish I had more resources. [C]
My grandmother needs the ICU! Or she is going to die! I know this is a scary situation, and I am worried for your grandmother myself. This virus is so deadly that even if we could transfer her to the ICU, I am not sure she would make it. So we need to be prepared that she could die. We will do everything we can for her. [C]
Are you just discriminating against her because she is old? I can see how it might seem like that. No, we are not discriminating. We are using guidelines that were developed by people in this community to prepare for an event like this. The guidelines have been developed over the years, involving health care professionals, ethicists, and lay people to consider all the pros and cons. I can see that you really care about her. [C]
You’re treating us differently because of the color of our skin. I can imagine that you may have had negative experiences in the past with health care simply because of who you are. That is not fair, and I wish things had been different. The situation today is that our medical resources are stretched so thin that we are using guidelines that were developed by people in this community, including people of color, so that we can be fair. I do not want people to be treated by the color of their skin either. [C]
It sounds like you are rationing. What we are doing is trying to spread out our resources in the best way possible. This is a time where I wish we had more for every single person in this hospital. [C]
You’re playing God. You can’t do that. I am sorry. I did not mean to give you that feeling. Across the city, every hospital is working together to try to use resources in a way that is fair for everyone. I realize that we don’t have enough. I wish we had more. Please understand that we are all working as hard as possible. [C]
Can’t you get 15 more ventilators from somewhere else? Right now the hospital is operating over capacity. It is not possible for us to increase our capacity like that overnight. And I realize that must be disappointing to hear. [C]
How can you just take them off a ventilator when their life depends on it? I’m so sorry that her condition has gotten worse, even though we are doing everything. Because we are in an extraordinary time, we are following special guidelines that apply to everyone here. We cannot continue to provide critical care to patients who are not getting better. This means that we need to accept that she will die, and that we need to take her off the ventilator. I wish things were different. [C]

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Notifying — When You Are Telling Someone over the Phone

What they say What you say
Yes, I’m his daughter. I am five hours away. I have something serious to talk about with you. Are you in a place where you can talk?
What is going on? Has something happened? I am calling about your father. He died a short time ago. The cause was COVID-19.
[Crying] I am so sorry for your loss. [Silence][If you feel you must say something: Take your time. I am here.]
I knew this was coming, but I didn’t realize it would happen this fast. I can only imagine how shocking this must be. It is sad. [Silence] [Wait for them to restart.]

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Anticipating — When You’re Worried About What Might Happen

What you fear What you can do
That patient’s son is going to be very angry. Before you go in the room, take a moment for one deep breath. What’s the anger about? Love, responsibility, fear?
I don’t know how to tell this adorable grandmother that I can’t put her in the ICU and that she is going to die. Remember what you can do: You can hear what she’s concerned about, you can explain what’s happening, you can help her prepare, you can be present. These are gifts.
I have been working all day with infected people, and I am worried I could be passing this on to the people who matter most. Talk to them about what you are worried about. You can decide together about what is best. There are no simple answers. But worries are easier to bear when you share them.
I am afraid of burnout, and of losing my heart. Can you look for moments every day where you connect with someone, share something, enjoy something? It is possible to find little pockets of peace even in the middle of a maelstrom.
I’m worried that I will be overwhelmed and that I won’t be able to do what is really the best for my patients. Check your own state of being, even if you only have a moment. If one extreme is wiped out, and the other is feeling strong, where am I now? Remember that whatever your own state, that these feelings are inextricable to our human condition. Can you accept them, not try to push them away, and then decide what you need?

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Grieving — When You’ve Lost Someone

What I’m thinking
What you can do
I should have been able to save that person. Notice: Am I talking to myself the way I would talk to a good friend? Could I step back and just feel? Maybe it’s sadness, or frustration, or just fatigue. Those feelings are normal. And these times are distinctly abnormal.
OMG, I cannot believe we don’t have the right equipment / how mean that person was to me / how everything I do seems like it’s blowing up. Notice: Am I letting everything get to me? Is all this analyzing really about something else? Like how sad this is, how powerless I feel, how puny our efforts look? Under these conditions, such thoughts are to be expected. But we don’t have to let them suck us under. Can we notice them, and feel them, maybe share them?

And then ask ourselves: Can I step into a less reactive, more balanced place even as I move into the next thing?

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For Proactive Planning in Contingency

The COVID-as-a-starter preferences or goals talk for patients in a health care setting.

“CALMER”

CHECK IN

Take a deep breath (yourself!).

“How are you doing with all this?” (Take their emotional temperature.)

ASK ABOUT COVID

“What have you been thinking about COVID and your situation?”

(Just listen.)

LAY OUT ISSUES

“Here is something I want us to be prepared for.” / “You mentioned COVID. I agree.”

“Is there anything you want us to know if you got COVID / if your COVID gets really bad?”

MOTIVATE THEM to choose a proxy and talk about what matters

“If things took a turn for the worse, what you say now can help your family / loved ones.”

“Who is your backup person — who helps us make decisions if you can’t speak? Who else?” (Having 2 backup people is best.)

<p“We’re in an extraordinary situation. Given that, what matters to you?” (About any part of your life? About your health care?)

Make a recommendation — if they would be able to hear it. “Based on what I’ve heard, I’d recommend _______. What do you think?”

EXPECT EMOTION

Watch for this — acknowledge at any point.

“This can be hard to think about.”

RECORD THE DISCUSSION

Any documentation — even brief — will help your colleagues and your patient.

“I’ll write what you said in the chart. It’s really helpful, thank you.”

_______

[C] FOR CRISIS ONLY

Talking about resource allocation (i.e., rationing).

“SHARE”

SHOW THE GUIDELINE

“Here’s what our institution/system/region is doing for patients with this condition.”

(Start with the part directly relevant to that person.)

HEADLINE WHAT IT MEANS FOR THE PATIENT’S CARE

“So for you, what this means is that we care for you on the floor and do everything we can to help you feel better and fight this illness. What we won’t do is to transfer you to the ICU, or do CPR if your heart stops.

(Note that you talk about what you will do first, then what you won’t do.)

AFFIRM THE CARE YOU WILL PROVIDE

“We will be doing [the care plan], and we hope you will recover.”

RESPOND TO EMOTION

“I can see that you are concerned.”

EMPHASIZE THAT THE SAME RULES APPLY TO EVERYONE

“We are using the same rules with every other patient in this hospital/system/institution. We are not singling you out.”

NOTE: This talking map is used only when an institution has declared use of crisis standards of care, or a surge state. When the crisis standards or surge are discontinued, this map should no longer be used.

______

When you need to talk to a family member by phone or video through saying goodbye to a patient who is in their last hours or minutes.

“LOVE”

LEAD THE WAY FORWARD

“I am [Tony], one of the [professionals] on the team.”

“For most people, this is a tough situation.”

“I’m here to walk you through it if you’d like.”

OFFER THE FOUR THINGS THAT MATTER MOST TO PEOPLE

“So we have the opportunity to make this time special.”

“Here are five things you might want to say. Only use the ones that ring true for you.”

“Please forgive me”

“I forgive you”

“Thank you”

“I love you”

“Goodbye”

“Do any of those sound good?”

VALIDATE WHAT THEY WANT TO SAY

“I think that is a beautiful thing to say.”

“If my [daughter] were saying that to me, I would feel so valued and so touched.”

“I think he/she can hear you even if they can’t say anything back.”

“Go ahead, just say one thing at a time. Take your time.”

EXPECT EMOTION

“I can see that he/she meant a lot to you.”

“Can you stay on the line a minute? I just want to check on how you’re doing.”

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_________

Your Comments and Feedback

Thank you all for contributing edits and ideas — they are extremely valuable, and we have incorporated most of them. If I did not incorporate your suggestion and you are wondering, you can email me at tonyback@uw.edu. Please note that this guide is designed as a completely standalone guide for clinicians, and thus some recommendations are slightly different than what we would teach in the context of an in-person or live virtual course.

Thank You

Alaa Albashayreh, MSN, RN
Patrick Archimbault, MD
Bob Arnold, MD
Darren Beachy, MTS
Yvan Beaussant, MD
Brynn Bowman, MPA
Colleen Christmas, MD
Randy Curtis, MD, MPH
James Fausto, MD
Lyle Fettig, MD
Jonathan Fischer, MD
Michael Fratkin, MD
Christina Gerlach, MD
Marian Grant, DNP
Caroline Hurd, MD
Margaret Isaac, MD
Josh Lakin, MD
Elke Lowenkopf, MD
Joanne Lynn, MD
Nick Mark, MD
Diane Meier, MD
Susan Merel, MD
Tona McGuire, PhD
Kathryn Pollak, PhD
James Tulsky, MD
Tali Sahar, MD
Vicki Sakata, MD
The John A. Hartford Foundation
Cambia Health Foundation

VitalTalk is a 501(c)3 nonprofit social impact startup dedicated to making communication skills for serious illness part of every clinician’s toolbox. This content will be in the free VitalTalk Tips app for iOS and Android very soon.

The post Finding the Right Words About COVID-19 appeared first on California Health Care Foundation.

COVID-19 Survey Shows Californians’ Access to Care and Desire for Testing

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Medical personnel administer COVID-19 swab test at drive-through testing station.
Health care workers from Riverside University Health Systems screen a patient for coronavirus at a drive-through testing site in Lake Elsinore, California. Photo: Bob Riha Jr. / Getty Images

To help Californians and state policymakers understand evolving demands on the state’s health care system during the COVID-19 pandemic, CHCF and global survey firm Ipsos are assessing residents’ desire for COVID-19 testing and their access to health care services.

In a statewide survey released by CHCF today, few Californians (0.8%) reported trying and failing to receive a COVID-19 test in the previous week. While 11% of state residents said they would like to get tested for the disease, 68% said they do not need to be tested now.

Californians with incomes at or below 138% of the federal poverty guidelines (PDF) were more likely to want a COVID-19 test (18% versus 11%). This may reflect the fact that Californians with low incomes are more likely to have chronic conditions that put them at higher risk from complications if they contract the new coronavirus that causes COVID-19.

In response to a question about their experience with health care over the last seven days, 68% of Californians said they had not sought care. The survey found some evidence that people are forgoing health care visits over concern about coronavirus. Less than 4% of residents report being unable to access care in a timely manner, saying they either tried and failed to make an appointment or that the wait was longer than they thought reasonable.

Californians with incomes at or below the poverty guidelines were more likely to have seen a health care provider in person in the past week relative to the overall population (18% vs. 10%). However, Californians with low incomes were also more likely to report having to wait longer than they thought reasonable for an appointment. This is consistent with findings of previous surveys showing access challenges among low-income patients.

Changing Rules

In light of state and federal regulations being modified to make more health care providers eligible to be reimbursed for video or phone appointments, CHCF/Ipsos is also tracking the experience of people who visited a health care provider by video or phone. In Friday’s survey, 3.6% of Californians reported having a telehealth appointment in the past week.

The data released today represent a benchmark. CHCF/Ipsos will continue this survey as the pandemic develops in the coming weeks.

This survey was conducted online in Ipsos’s Omnibus using the web-enabled “KnowledgePanel,” a probability-based panel designed to be representative of the California general population, not just the online population. The study consisted of 1,113 representative interviews conducted among California residents who were at least 18 years old between March 20 and March 25, 2020.The margin of error is +/-3.1 percentage points.

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California Mobilizes for a Health Care Surge

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Medical personnel administer tests for COVID-19
Medical personnel at a testing site in Lake Elsinore, California, on March 22, 2020. Photo: Bob Riha Jr. / Getty Images

The spread of the novel coronavirus has upended life across the Golden State. On March 19, Governor Gavin Newsom issued an order that all individuals living in California were to stay at home except for essential activities like buying groceries or getting necessary health care. Public schools, nonessential businesses like gyms and entertainment venues, and parking lots at many state parks and beaches, are closed.Essential Coverage

The health care sector, on the other hand, continues to serve patients while actively preparing for the COVID-19 pandemic. Health experts predict that California’s surge hasn’t come yet. Grant Colfax, MD, director of the San Francisco Department of Public Health, said he expects in a week or two to see a surge in coronavirus patients who need to be hospitalized, Erin Allday reported in the San Francisco Chronicle. Newsom recently increased the estimate of additional hospital beds needed for Californians who become sick with COVID-19 from 20,000 to 50,000.

Here’s what you need to know about how California is adopting policies related to health care coverage, workforce, telehealth, and palliative care to prepare for the COVID-19 pandemic.

Helping Californians Stay Covered

Covered California, the state’s Affordable Care Act health insurance exchange, has opened a special enrollment period to ensure that the newly unemployed don’t get bumped off their health coverage. Californians now have until June 30 to sign up for coverage. The California Department of Managed Health Care and the California Department of Insurance say the enrollment period also applies to health plans purchased by individuals outside the exchange.

State subsidies are available to make health insurance affordable for Californians purchasing coverage through the exchange. According to a Covered California news release, 576,000 consumers earning between 200% and 400% of the federal poverty level receive a monthly average of $608 per household in federal tax credits and new state subsidies. For consumers earning 400% to 600% of the poverty level, the average state subsidy to eligible households is $504 per month.

The state has put a 90-day hold on reviews of Medi-Cal renewals to ensure that individuals already enrolled don’t experience a gap in coverage. The California Department of Health Care Services (DHCS), which administers Medi-Cal, “is seeking to expedite applications for senior citizens and other populations considered vulnerable to the disease,” Cathie Anderson reported in the Sacramento Bee. Medi-Cal enrollment is continuous year-round and is not subject to enrollment periods.

These collective actions are important because being uninsured is “downright dangerous during a public health emergency,” Anthony Wright, executive director of Health Access California, told Sammy Caiola of Capital Public Radio. “In order to get tested and screened you should call your doctor, but that presumes you have a doctor or usual source of care.”

To encourage testing for Californians exhibiting COVID-19 symptoms, Covered California Executive Director Peter V. Lee “stressed that all screening and testing for the coronavirus is free for anyone with coverage, whether through Covered California, Medi-Cal, or employer-sponsored insurance,” Erica Hellerstein reported for CalMatters.

COVID-19 Highlights Workforce Shortages

The crisis has exacerbated the nation’s health care workforce shortage, and California hospitals are bracing for the worst.

Across the country, “hospitals are taking extraordinary measures to bulk up the workforce, from calling on retirees for help to assigning medical students to answer the phones,” Rachel Roubein and Joanne Kenen wrote in Politico. In an attempt to ease the challenges, the Trump administration “announced new rules that would let doctors practice across state lines, without going through layers of recertification and licensing.”

In the meantime, hospitals are working on contingency plans for freeing up their staff in the event of an influx of coronavirus patients. Medical experts are worried about patient-to-provider transmission of the coronavirus. Jenny Gold reported in California Healthline that one case of COVID-19 in Vacaville left more than 200 hospitals workers under quarantine. “It’s just not sustainable to think that every time a health care worker is exposed they have to be quarantined for 14 days,” Jennifer Nuzzo, DrPH, senior scholar at the Johns Hopkins Center for Health Security, told Gold. “We’d run out of health care workers.”

To free up more doctors and nurses, Newsom is exploring the possibility of loosening the state’s “scope of practice” laws, which govern the types of work that licensed health care workers can perform, Sophia Bollag wrote in the Sacramento Bee. “Our staffing is going to require more flex, it’s going to require more capacity as it relates to existing ratios, as it relates to current scope of practice,” Newsom said during a March 23 news conference. He also indicated that “fourth-year medical students and nursing students near the end of their training could be called on to treat COVID-19 patients,” Bollag reported. Retired doctors and those no longer practicing medicine could also be invited back to treat COVID-19 patients.

Amid reports that supply shortages are forcing some health care workers to wipe down and reuse single-use personal protective equipment (PPE), the state released 21 million N95 masks from its emergency reserve. Companies and individuals across the country are stepping up to help. Direct Relief has donated PPE to more than 1,000 community health centers and free clinics nationwide, PG&E is donating nearly one million N95 and surgical masks to California hospitals, and Tesla CEO Elon Musk purchased over 1,000 ventilators to ship to Los Angeles. Bay Area companies Clean360 and Falcon Spirits Distillery pivoted from making soap and spirits, respectively, to making hand sanitizer.

Hospitals in need of PPE can request supplies by filling out a form on the website of Project N95 — a new national clearinghouse for medical equipment. Medical equipment suppliers and government agencies can also visit the website to provide equipment and organize bulk purchase orders.

Those with PPE to donate can learn from this KQED article how to help in the Bay Area and beyond.

Telehealth May Transform How Care Is Delivered

The need for social distancing to slow the spread of COVID-19 has led to a spike in the use of telehealth services, a development that could change the health care landscape forever. Although medical care has been transformed by technology, the adoption of telehealth has lagged, cardiologist Haider J. Warraich wrote in the Los Angeles Times. “One of the main reasons China has been able to slow coronavirus transmission has been because of a dramatic increase in virtual visits,” he wrote. “Supporting telemedicine on a par with [in-person] visits has the potential to protect patients and health care personnel and allow for much more efficiency in the system.”

To that end, the Trump administration announced on March 17 that it would immediately expand Medicare telehealth coverage nationwide to help older Americans access care from home at no additional cost.

To bring telehealth to the 13 million people insured through Medi-Cal, California applied for a federal 1135 waiver that included a request for flexibility for telehealth and virtual communications. Part of the waiver request was approved, but several portions including telehealth are still awaiting approval. In the meantime, DHCS has taken immediate actions to expand telehealth access, requiring Medi-Cal managed care plans (PDF) to pay providers the same rate for telehealth and telephone visits as they do for in-person visits.

Some California hospitals have increased their use of telehealth to curb foot traffic. The American Medical Association reported that 21 Kaiser Permanente hospitals in Northern California serving an average total of 3,000 inpatients per day increased video visits for primary and specialty care by more than 150% in a recent two-week period. UCSF is reaching out to patients with various conditions ahead of their scheduled in-person visits to see if they can convert them to telehealth visits, Jessica Kim Cohen reported for Modern Healthcare.

To stay up-to-date on telehealth policy changes, bookmark the Center for Connected Health Policy’s living document of federal policies and state-specific actions. The California Medical Association compiled a running list of telehealth resources, and the Center for Care Innovations is updating a knowledge center for practicing virtual care during a pandemic.

Care at the End of Life

As more people are hospitalized due to COVID-19, are health care systems, patients, and families prepared for tough conversations and decisions about health care preferences and medical interventions? Now more than ever, it is important for providers to tap into the core tenets of palliative care to guide patients and their families through uncharted waters.

Palliative care is a medical specialty focused on alleviating stress and suffering for people with serious illness, and it is often provided alongside curative care as an extra layer of support. Some experts worry that a longstanding shortage of palliative care specialists “could leave many COVID-19 patients in distress,” Liz Szabo reported in Kaiser Health News.

“This pandemic means that we will be drawn into countless conversations with families who are suddenly having to make difficult decisions about life and death,” Nathan Gray, MD, a palliative care specialist at Duke University Hospital, wrote in a comic book–style story that he illustrated. “As we take stock of masks, gloves, and ventilators, we must also be ready to dig deep into our reserves of patience, communication, and compassion.”

In a Washington Post commentary, Emily Aaronson, MD, an emergency physician and assistant chief quality officer at Massachusetts General Hospital, encouraged families to engage in conversations about end-of-life wishes now. “It’s important that you understand what would be most important to them if they were in the last phase of their life — and what steps you and others will have to take to ensure those needs are met,” Aaronson wrote. “These are conversations designed to guard against regrets.”

Many resources are available to help families and health care providers alike. Aaronson recommended the Conversation Project and Death Over Dinner to facilitate conversations. The Center to Advance Palliative Care organized a COVID-19 toolkit for clinicians, and VitalTalk, a nonprofit organization dedicated to helping clinicians develop communication skills for serious illness, published a guide to difficult conversations about care of COVID-19 patients. This guide was published last week on The CHCF Blog.

How has COVID-19 affected your work? Tweet at me with #EssentialCoverage or email me.

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Veteran California Journalists Confront Challenges of Coronavirus Beat

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Jenny Gold
Jenny Gold is one of several reporters at California Healthline / Kaiser Health News who focus almost exclusively on the impact of the coronavirus pandemic. Photo: Michael Short

On March 18, Jenny Gold, an Oakland-based reporter with Kaiser Health News (KHN), learned that surgeons at UC Davis Medical Center were still performing elective surgeries — even as hospitals in California and across the country were desperately seeking masks and other protective personal equipment in time for an expected surge of coronavirus patients.

Although news outlets had already reported the information, Gold decided to go deeper by interviewing unnamed physicians at the medical center. They expressed dismay at the decision to continue with elective surgeries, even as a growing number of state and local governments, including San Francisco, issued moratoriums. One doctor revealed some of the procedures that the hospital did that week.

“On Monday, March 16, two of the hospital’s operating rooms were dedicated to cataract surgeries and another to lifting droopy eyelids, according to a doctor with access to the daily surgical schedule,” she wrote. “Physicians also performed two gastric bypasses, a type of weight-loss surgery. On Tuesday, there was a hernia repair and a cochlear implant. On Wednesday, surgeons inserted breast implants in one patient and removed a nonmalignant mass from another.” A UC Davis spokesman told Gold the hospital was continuing to provide these services “because we have the supplies and the space to safely do it.” The center, added the spokesman, was “evaluating the situation on a daily basis.”

Gold’s article was posted on March 20 by California Healthline (CHL), a news service supported by the California Health Care Foundation and published by KHN. Multiple sites reposted it. “It was a fast turnaround for us,” said Gold, part of a team covering the West Coast wave of the epidemic. “This situation has really crunched” the production schedule.

Rewriting Reporting Strategies

The epidemic has upended reporting strategies just as it has disrupted standard practices in other fields. With the attention of the US and the world focused on the pandemic, media organizations are scrambling to provide audiences with authoritative and frequently updated information. The public health crisis arrived after years in which news outlets slashed resources devoted to health coverage.

Despite the enormous reportorial firepower now trained on all things coronavirus, Gold and colleague Anna Maria Barry-Jester in Santa Cruz, California, are positioned to stay ahead of the curve. As experienced health reporters who have covered previous disease outbreaks and other medical emergencies, they aim to highlight issues of regional and national significance for both CHL and KHN.

“At this point, every reporter is a coronavirus reporter,” Gold said. “At KHN, people really have the expertise to show the complexity of these issues with a sophisticated analytical lens.”

Ken Doctor, a national media industry analyst based in Santa Cruz, said he has been impressed by KHN’s handling of the coronavirus crisis. The organization’s reporters, he said, have been able to bring more context and nuance to the task than others who lack a specialized understanding of health and medicine. “KHN’s coverage continues to offer more depth and breadth than much of what we see reported and re-reported,” said Doctor. “It is shining through.”

KHN and CHL are vigilant about maintaining high journalistic standards despite compressed timelines, said Gold. “We are going through the same editing process, with several editors reading our stories,” she said. “We never want to put out inaccurate information, but at this moment in particular, the stakes are much higher than they normally are.”

Informed by Life Experiences

The two journalists have drawn on their own life experience for story ideas. Barry-Jester, who joined KHN in early 2019, realized from discussions with friends that people with compromised immune systems have already garnered hard-earned wisdom on the subject of staying safe. “They have a lot of knowledge about what we’re being asked to do right now because these are standard practices for them,” said Barry-Jester, whose regular beat is public health.

Those conversations led to an article — “How to Avoid Coronavirus? Lessons from People Whose Lives Depend on It” — that explored what the epidemic means for these patients.

“Whether it’s people who had recent organ transplants, people undergoing chemotherapy, or people with chronic diseases,” Barry-Jester reported, “America has a broad community of immunosuppressed residents who long ago adopted the lifestyle changes public officials now tout as a means of avoiding contagion: Wash your hands, and wash them often. Don’t touch your face. Avoid that handshake. Keep your distance from people who cough and sneeze.”

The defining feature for most people right now is uncertainty, and I get to talk to experts, sometimes a dozen every day. That feels like a privilege.

—Anna Maria Barry-Jester

Barry-Jester began tracking the coronavirus in early January. Given travel links between China and cities like Los Angeles, San Francisco, and Seattle, it seemed possible that California and Washington State could be the sites of early cases in the US. “We thought it made sense for some of us out west to be thinking about it, even in the days before it became clear that this would be a big deal in the US,” she said.

Her first coronavirus story appeared on January 31 after a confirmed case of person-to-person transmission in Chicago — the first such case in the nation. Barry-Jester’s story examined why local health officials in Chicago, California’s Orange County, and elsewhere were not identifying locations where known coronavirus patients had spent time. Subsequent stories examined the meaning of the phrase “close contact” when discussing viral transmission and the multiple factors that have influenced regional decisions to close schools. “We supplement other newsrooms, so we’ve been trying to be careful to do stories that added value for readers rather than a lot of dailies or minute-by-minute updates,” she said.

With a master’s degree in epidemiology from Columbia University, Barry-Jester has reported on outbreaks of Zika and other infectious diseases from far-flung locations, including Central America and India. In covering the domestic side of this epidemic, she is keenly aware of the potential impact of her reporting on those around her. “To hear from friends and family who are so concerned definitely motivates me,” she said. “The defining feature for most people right now is uncertainty, and I get to talk to experts, sometimes a dozen every day. That feels like a privilege.”

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