Advance directives: How to talk with patients about them

Published in AMA Wire

A patient’s comfort in contemplating, completing or even discussing an advance directive can greatly depend on what the physician has to say and offer.

It is often an awkward situation, in large part because many patients only see the advance-directives process in terms of suffering and death. That does not have to be the case.

“When physicians approach advance-care planning from the aspect of living well and quality of life, then patients feel reassured and then they want to engage with you and tell you what matters most,” according to internist VJ Periyakoil, MD, director of palliative care education and training at Stanford University School of Medicine.

Dr. Periyakoil wrote the “Planning for End-of-Life Decisions with Your Patients,” online physician education module.

The module is part of the AMA STEPS Forward™ collection of more than 50 practice-improvement education modules. It is part of the AMA’s strong support of advance directives and the help it provides to physicians on end-of-life matters, including guidance from the AMA Code of Medical Ethics.

Medicare also has helped spur interest in advance directives, with payment starting in 2016 for every patient to have a voluntary consultation on the matter with a physician or qualified health care professional. This benefit has been widely used, with about 14,000 providers billing almost $35 million in the first year.

A recent review of 150 studies of advance directives found more than a third of Americans have them, in some form or another. That leaves a large majority—many with the most immediate need for advance directives—without written instructions that will protect their intentions or provide for trusted family or friends to make care decisions if they are unable.

A focus on what matters most

The CME credit-eligible module from the AMA is based on the Stanford University Department of Medicine’s Letter Project. The module’s central, downloadable element is a three-page letter template that in plain language guides the patient through expressing life values and goals, as well as care instructions such as palliative sedation.

The letter template is available in eight languages and written at a fifth-grade reading level. Patients can complete the letter by themselves or be aided by patient navigators or other clinicians. At Stanford, completed letters are scanned into the patient’s electronic medical record using a barcode.

Though not a formal advance directive or living will—those are governed on a state-by-state basis—the letter can be used as a worksheet to help patients express their wishes in simple language. A physician can include the letter in a patient’s medical record as patient-generated health data.

The module provides detailed advice about how to initiate the conversation. Dr. Periyakoil said her approach is to “normalize” the process by saying, “I ask this of all my patients.”

In that way, “patients don’t feel that they are singled out for this.” Her goal, she assures them, is “to provide you with the best possible care and to do that it really helps me to understand what matters most to you.”

The letter provides check boxes for standard end-of-life care questions and space for naming the individuals who can make medical decisions if the patient is unable, but starts and devotes most of its space for patient to write about what’s most important to in terms of what’s important in life:

“The physician can then move in confidence with clinical care that is in sync at all times with what the patient wants. Physicians often give medical advice or make care plans in a vacuum, “and we know very little about the patient as a person,” said Dr. Periyakoil.

“It is incredibly important to know everything there is to know about the disease,” she added. “It is equally important to know about the patient’s life goals and values,  so that the care we provide is guided by what matters most to the patient. .”

AMA’s STEPS Forward is an open-access platform featuring more than 50 modules that offer actionable, expert-driven strategies and insights supported by practical resources and tools.

Based on best practices from the field, STEPS Forward modules empower practices to identify areas or opportunities for improvement, set meaningful and achievable goals, and implement transformative changes designed to increase operational efficiencies, elevate clinical team engagement, and improve patient care.

Several modules have been developed from the generous grant funding of the federal Transforming Clinical Practices Initiative (TCPI), an effort designed to help clinicians achieve large-scale health transformation through TCPI’s Practice Transformation Networks.

The AMA, in collaboration with TCPI, is providing technical assistance and peer-level support by way of STEPS Forward resources to enrolled practices. The AMA is also engaging the national physician community in health care transformation through network projects, change packages, success stories and training modules.

 

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Mesothelioma Patients to Learn about Hospice

Published in mesothelioma.net

Palliative care experts are using the occasion of Aretha Franklin’s death to urge mesothelioma patients and others diagnosed with terminal illnesses to learn about hospice care and understand that it provides far more than just a “days before” benefit. Franklin’s family announced that she would be entering hospice care just three days before she died, less than the national median length of stay in hospice which is just slightly over three weeks and far less than the amount of time that the service is available. According to palliative care experts, when announcements are made that celebrities are entering hospice just days before their deaths, it confirms the public’s impression that hospice is a place to go before you die, rather than its actual goal of anticipating, preventing and managing patient suffering. The earlier mesothelioma patients enter hospice care, the more benefit they are able to get and the greater the improvement in their quality of life.

People diagnosed with mesothelioma who are considering hospice care would do well to learn about those celebrities who have used it to its fullest: columnist and author Art Buchwald called the five months he was in hospice “the best time of [his] life”, where he was able to continue working, seeing friends and dying with a minimum of discomfort, in a warm and comforting environment. Palliative care professionals are working to spread this news and reframe the narrative about what hospice care from “nothing more we can do” to “living as well as you can for as long as you can” writes Jennifer Moore Ballentine, executive director of the CSU Institute for Palliative Care, based at Cal State San Marcos.

In an article she wrote for the San Diego Union Tribune, Ballentine urges family members and physicians alike to remember that palliative care is available for mesothelioma patients and others with a life expectancy of six months or less who are no longer seeking treatment. Unfortunately, a study in the AMA Journal of Ethics found that specialty physicians are less likely to suggest palliative care than are family and internal medicine clinicians. Much of this is due to the challenge of having difficult conversations.

If you or someone you love has been diagnosed with mesothelioma, you are already aware that the rare form of cancer has no cure. If you would like information on the benefits of palliative care or any other resources to support you as you face this challenging disease, contact the Patient Advocates at Mesothelioma.net today at 1-800-692-8608.

 

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Five Reasons Home Health Care Is on The Rise

Published in Third Age by Tina Marrelli, MSN, MA, RN, FAAN

If you have tried to get care at home for a loved one, it may have been a difficult and time-consuming process. You are not alone. I also had the experience of trying to find care for an older adult family member, and though I have worked in home care for many years, it is not an easy experience. According to the National Association for Home Care and Hospice, around 12 million people in the United States (U.S.) receive home health care from more than 33,000 provider organizations. As the population continues to grow, that number will likely more than double by 2050, increasing to 27 million.

Here are five factors contributing to the complexity.

*Aging of the population. This has been referred to as the graying tsunami, and for good reason. The projection that roughly 10,000 baby boomers will turn 65 each day, and that this trend will continue for the next 19 years, is staggering, no matter how many times it is repeated.  In the U.S., one of the fastest growing segments are those people who are age 85 or older. Called the “oldest old” by the National Institutes on Aging (NIA), they constitute the most quickly growing segment of the U.S. population. And now think about how many people you know who are in their 90s and maybe have passed the 100 mark? My sweet father-in-law moved in to our home when he was 93 and lived with us for three years – until he died at our home with care and hospice support. This scenario is not unusual. And think about the health implications in the oldest old with the frailty and other challenges that come from living to that age.

*Home care means many things. There are home health agencies certified by Medicare and Medicaid. These are agencies that provide what are called “intermittent” visits by nurses, aides, therapists and/or social workers. These services are provided under a physician-directed plan of care. There are specific rules related to coverage and care provided and like any medical insurance program, there are covered and non-covered services. There are also private duty organizations that provide services, such as a “shift” of 4 or 8 hours. In this instance, a family may contact a number of organizations to obtain an aide to be with and care for a family member who might have personal care needs, such as a need for assistance with bathing, dressing and/or meal preparation.  There are also home care services that are provided to very ill or technology-dependent people at home, and they may need specialized nursing care, such as that provided by a registered nurse.

*Lack of enough trained caregivers. According to the Bureau of Labor Statistics, (BLS) home health aides and personal care aides are two of the fastest growing jobs. In fact, according to the BLS, their job outlook, defined as the projected numeric change in employment from 2016-2026, is 41 percent; which is much faster than average. The employment increase is estimated at 1,208,800 more aides!  Varying factors contribute to organizations having trouble finding and then retaining more aides.

*Chronic conditions and the growing complexity of care. According to the Centers for Medicare and Medicaid Services, it is estimated that 117 million adults have one or more chronic health conditions, and one in four adults have two or more chronic health conditions. These conditions can include cardiovascular (heart) conditions, such as heart failure, respiratory (breathing) conditions such as COPD (chronic obstructive pulmonary disease) or asthma, arthritis, cancer, depression, diabetes and more. Such chronic diseases also demand trained caregivers to help people better manage their health conditions.

*People wanting to age in place. This may be their home or may be an assisted living residence. It was not so long ago that people were cared for primarily at home and oftentimes died at home. Many patients receive care in their homes through the Medicare hospice benefit. In fact, most hospice care is provided in the home setting. Wanting to age in place is a great goal, although it may not always be realistic, depending on the person, the care needs and safety concerns.

So all these kinds of care at home are home care and are increasing the need for these specialized services. The term “home” becomes flexible as people seek the “best” situation for themselves and their loved ones to age in place. There is no question that home care is more complicated than people think. When finding care for yourself or a loved one, ask for (and check) references, read reviews and do your homework. Some of the best knowledge is local, so ask your neighbors and friends who they have worked with when care was needed for their family member.

Tina Marrelli, MSN, MA, RN, FAAN is the author of the Handbook of Home Health Standards: Quality, Documentation, and Reimbursement (6th edition, 2018) and A Guide for Caregiving: What’s Next? Planning for Safety, Quality, and Compassionate Care for Your Loved One and Yourself. 

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Veterans Journal: Long-term care benefits for veterans protect your retirement

Published by George W. Reilly in Providence Journal

 

A long-term care event for a veteran or any adult can happen at any age, and the potential financial and emotional strain that comes with it can have an impact on you, your family and your loved ones.

Did you know millions of Americans require long-term care during their lifetime, according to the Centers for Disease Control and Prevention, which includes the need for either cognitive or physical assistance with everyday tasks such as bathing, eating and dressing.

Unfortunately, traditional health insurance, including TRICARE or TRICARE for Life, does not pay for the chronic, ongoing assistance with daily living that is most often associated with long-term care.

As a member of the armed services, you are entitled to apply for benefits provided by the Department of Veterans Affairs, although several factors come into play when determining eligibility. For this reason, and to ensure you are prepared for any situation, it is important to understand how VA benefits work so you can form a clear understanding of your traditional health-care benefits as well as what a long-term care event might mean for retirement planning.

The VA health benefits program provides coverage for long-term care, but you must qualify for the program. The VA determines the number of veterans who can be enrolled in the program based on congressional funding allocated each year. Due to the limited availability of enrollments, the VA has established eight separate priority groups (see VA Health Care Eligibility online at www.military.com/benefits/veterans-health-care/va-health-care-eligibility.html) to categorize enrollees and determine the level of benefits they are entitled to or whether the potential enrollee is eligible at all.

Eligibility to receive long-term care benefits depends on many factors, including service-connected disability status (70 percent or greater — see the VA’s Federal Benefits for Veterans, Dependents, and Survivors online at https://bit.ly/2zcGyLv), current income levels, and even your ability to contribute to the cost of care.

Members of the uniformed services seeking long-term care benefits may find they are unable to meet the VA’s eligibility criteria. Long-term care can be expensive, and service members often rely on the VA to cover the associated costs. Depending on your eligibility status in the VA benefits program, the level of coverage available to you may not be enough. For this reason, you may want to consider applying for standalone long-term care insurance like the plan offered through the Federal Long Term Care Insurance Program at https://bit.ly/2tUYTau.

FLTCIP provides long-term care insurance for enrollees who are federal and U.S. Postal Service employees and annuitants, active and retired members of the uniformed services, and their qualified relatives.

With benefits designed specifically for active and retired members of the uniformed services since 2002, the FLTCIP offers a good way to help protect your savings and assets should you or your loved ones need long-term care. Designed to provide solutions for a range of financial situations, this employer-sponsored program has grown to be the most successful and used program of its kind, providing comprehensive coverage for more than 270,000 people.

Certain family members, or qualified relatives, are also eligible to apply even if the veteran does not. Qualified relatives include spouse, domestic partner, parents, parents-in-law and adult children.

To learn more about the FLTCIP’s benefits and features or to find the average long-term care costs in your geographic area, visit online at LTCFEDS.com. Certain medical conditions or combinations of conditions will prevent some people from being approved for coverage. You need to apply to find out if you qualify for coverage.

The Federal Long-Term Care Insurance Program is sponsored by the U.S. Office of Personnel Management, insured by John Hancock Life & Health Insurance Company and administered by Long Term Care Partners, LLC.

For personalized assistance, call (800) 582-3337 or TTY (800) 843-3557 to speak or interact with a program consultant available to answer any questions and provide step-by-step information on plan design and the application process.

 

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Hospice is here for patients and families

In the health care industry, awareness for hospice care continues to grow as more patients and families turn to hospice and understand the care hospice provides.

Although myths about hospice are that “it is only for cancer patients”, “hospice is giving up” or “too expensive, indeed the opposite is true.

Hospice illustrates that it is a vital part of end-of-life care and plays a significant role in health care in communities.

Here are some facts to know about hospice:

 

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Those in hospice need additional care

Published in Picayune Item by Leah McEwen

Those who are in hospice care often have many needs, but don’t always have access to the assistance required.

One of my grandmothers developed Alzheimer’s about ten years ago and lived with it for several years. She was in her 60s when she received the diagnosis. While the onset of the illness was slow, when it worsened, it became unmanageable.

She forgot who we were, disappeared from her home several times and eventually became a danger to herself. As her condition worsened, she also developed several other illnesses, which made taking care of her impossible for my grandfather. Thankfully, my family was able to pay for outside help to provide the care she needed until she passed away.

Unfortunately, this isn’t the case for everyone. Many elderly adults don’t have family to care for them, and do not have the funds to pay for outside help such as a nursing facility or in-house nurse.

Many hospice services fill this gap by providing care that is paid for through donations, or government programs like Medicare and Medicaid. There are also non-profit organizations that can provide everyday necessities like groceries.

I recently met a man in his early nineties who had saved enough money to pay for his livelihood until he reached 85-years-old. He said he hadn’t expected to live past that point, but when he did, he found himself penniless and with no one to turn to.

With the help of local volunteers and nonprofit organizations who discovered his need, he was relocated to a better home, his utilities were paid and he was provided with groceries and medical coverage.

Organizations that help elderly adults and hospice patients in need improve the quality of life for patients and their families.

 

 

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Coping with bereavement

Don’t bottle things up

Not everyone can express their sadness openly. But intentionally bottling up your feelings won’t help. Don’t try to compare yourself to someone who has gone through something similar. Grief is an individual experience, so don’t put a time limit on it based on how others have coped. Remember that it often takes much longer to get through bereavement than most people think.

Talking goes a long way.

Talk about it

One of the most helpful things to do after a bereavement is to talk about what you’re going through. You may, for instance, find it easy to talk to friends and family members. But if you’re the type of person who prefers to experience grief privately, you may prefer to talk to a counselor. You could also try getting help from a charity that specializes in bereavement counseling. Other support services may exist in your area – ask at your doctor’s surgery for details.

Plant a memorial

Research suggests that maintaining bonds with someone who has died is healthy, as many bereaved people fear their loved ones will be forgotten. Being able to pay your respects at a graveside can help, as it provides a place you can associate with the deceased.
You could also consider planting a tree in your local park, or even a rose bush in your garden as a reminder of the person you’ve just lost? To plant a tree in a favorite spot, contact the parks department of your local municipal council.

Take small steps

When someone close to you dies, don’t rush to make big decisions. Instead, take small steps such as starting a new hobby or taking a short break. Then in time, you’ll find the right time and the courage to make any necessary big changes.

 

 

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How AI could improve the quality of end-of-life care

Published in venturebeat.com by Scott Bay

The means to predict mortality using artificial intelligence could be a transformative factor in the future of palliative health care. While this topic may seem a bit morbid, AI has the potential to help medical care providers and doctors significantly improve the delivery of patient care in hospice situations.

Getting the right kind of treatment at the end-of-life stage is more important than many assume. Not enough treatment — or even inaccurate treatment — can provide a painful experience for patients, and overcare may result in hundreds of thousands of dollars in unnecessary medical bills, even if the patient is covered by insurance. While it’s crucial to select the proper medical coverage that includes hospice care regardless of the situation — especially for people over 65 or older, because there are specific plans for specific purposes to help with these medical costs — AI advances may help patients and physicians determine illness sooner to prepare for end-of-life costs and treatments before it’s too late.

A recent study in the journal NPJ Digital Medicine shows that technology will soon allow physicians to improve the timing and delivery of patient care. Researchers used AI to scan electronic health records (EHR) and notes doctors left in patient records to detect potential clinical problems and health risks. The AI system predicted patient mortality rate and final diagnoses more accurately and quickly than physicians. So how does it work?

Using deep learning for patient insight

In the NPJ study, researchers fed almost 48 billion data points (including doctors’ patient notes, patient demographics, procedures, medications, lab results, and vital signs) into a deep learning model. This model analyzed the data and predicted, with 90 percent accuracy, medical issues like mortality rates, longer hospital stay lengths, unplanned readmissions, and patients’ final diagnoses. When compared to traditional predictive models, the deep learning model was more accurate and scalable.

For example, a woman in the final stages of breast cancer came to a city hospital with fluid already in her lungs. Two doctors reviewed her case, and she received a radiology scan. The hospital’s traditional predictive model reviewed her chart and estimated there was a 9.3 percent chance she would die in-hospital. A new type of algorithm (created by Google) reviewed the woman’s chart — about 175,639 data points — and estimated her death risk at an actual 19.9 percent. The patient passed away in a matter of days, proving the algorithm model to be more accurate.

Compared to the traditional method, the deep learning model was 10 percent more accurate. The system’s ability to sift through data that was previously unavailable helped it provide a more accurate mortality estimation. Rather than looking at a few risk factors, the model looks at the patient’s entire electronic health record (EHR), including notes buried deep in PDFs or scribbled on old charts. Using this process, in the future, may enable doctors to save lives and provide better patient care.

Saving lives and money

So what can we do with this information? With more accurate predictions of a patient’s mortality, hospitals and doctors can use better estimations to adjust treatment plans, prioritize patient care, and predict negative outcomes before they occur. In addition to this, health care workers wouldn’t have to spend as much time manipulating patient data into a standardized, legible format.

For example, a report by Futurism notes that Ultromics, an AI diagnostics system developed in England, can diagnose heart disease more accurately than doctors. The same report notes that a startup bot called Optellum is working on an AI system that can diagnose lung cancer by analyzing clumps of cells found in scans. This bot shows promise to diagnose 4,000 additional lung cancer cases per year and at an earlier rate than doctors are currently capable of diagnosing.

Not only can these AI diagnostics systems save lives, but they can also help hospitals save money. In an interview for Futurism‘s report, Timor Kadir, Optellum’s chief science and technology officer, stated that the AI system could cut health care industry costs by $13.5 billion. Sir John Bell, chair of the U.K.’s Office for Strategic Coordination of Health Research, added, “There is about $2.97 billion spent on pathology services in the National Health Service. You may be able to reduce that by 50 percent.”

Predicting death for better care

Current research shows that less than half of the eight percent of patients who need palliative care actually receive it. There are times when doctors make inaccurate or overly optimistic prognoses about a patient. Dr. Kenneth Jung, a research scientist at Stanford University School of Medicine, told NBC, “Doctors may not make the referral [for palliative care] simply because they’re so focused on managing their patients’ health issues that palliative care doesn’t cross their minds.”

Failing to identify patients who need palliative care can have devastating consequences. If the patient’s health suddenly declines, they may spend their final days receiving aggressive medical treatments in hopes of extending their lives by a few weeks. However, studies have shown that approximately 80 percent of Americans would prefer to die at home, rather than in a hospital. Sadly, the report also notes that 60 percent of these people die in acute care hospitals.

It’s in these cases that AI can help identify patients who are critically ill and might benefit from end-of-life care. Early identification of these patients can help them get the treatment they need sooner. And it may allow patients to remain at home, instead of in the hospital, during their final days.

While some may wonder about the future of AI in health care, the purpose of AI systems is to play a supporting role in the health care industry. These systems will serve as a powerful tool that will help physicians and other health care professionals provide higher quality care and offer palliative treatments in a timely manner.

Scott Bay is a writer who covers AI and Internet of Things for PC Mag, Wired, and Men’s Health.

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Better Sleep for Stressed-Out Caregivers

Those who care for people at the end of their lives tend to struggle to sleep well. Lack of sleep makes it challenging to care effectively, respond appropriately to emergent situations, and give loving care. When you are a caregiver or working with caregivers, it’s important to consider sleep.

Caregivers May Struggle to Sleep

While anecdotal evidence suggests that almost all caregivers of end-of-life patients struggle with sleep, there’s not a lot of research available on how to effectively help them. The general consensus seems to be that (1) caregivers usually don’t sleep well, (2) current strategies for helping people sleep often aren’t effective for them or aren’t something they can implement because of their caregiving situations, and (3) there’s a need for more research to help this population.

Another study suggests some reasons why caregivers might struggle with sleep. These include a disturbed sleep routine, because many caregivers are up with their patients in the night, attending to their needs or simply checking on them.

Caregiving can also be a burden, and many caregivers end up in a depression. It’s difficult to watch a loved one deteriorate before your very eyes. Finally, many caregivers struggle with physical health issues of their own, often due to their caregiving tasks. They may be too sedentary, eat poorly or have other underlying health issues that affect their sleep.

Simply understanding why caregivers don’t get enough sleep may be the first step toward helping them rest. Here are some tips that may promote sleep.

Getting Better Sleep

Getting good rest can be tricky for caregivers, but here are some things that can help.

Re-think the sleep schedule. If the patient always wakes or needs checking in the night, a caregiver can do their best to try to get at least 3 hours of sleep on each side of a wake-up. This schedule can mean going to bed earlier or sleeping in but will help caregivers get the deep sleep and the REM sleep that they need to function well.

Get a comfortable bed. There’s not much worse than trying to sleep on a poor-quality mattress. While a caregiver’s time and money are valuable, it’s worth the effort and expense to find a mattress that they want to fall into at night.

Make the bedroom dark and quiet. This setup promotes sleep and makes it less likely that the caregiver will wake up prematurely or lie awake in bed, unable to sleep.

If you are a caregiver or you are working with caregivers, know that sleep shouldn’t be negotiable. Somehow, caregivers need to figure out how to get the rest that they need.

 

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Understanding Veteran Emergency Medical Care

Published in Camp Lejeune’s The Globe by Ena Sellers Managing editor

This week we would like to highlight essential facts to help you understand emergency medical care for veterans. But first and foremost, if you are experiencing a medical emergency and believe your life is in danger, please go to the nearest emergency room.

According to the Veterans Health Administration Office of Community Care, veterans can seek emergency care and call for an ambulance during a medical emergency before checking with the VA. The key is in acting promptly and notifying the VA within 72 hours of admission.

“This allows VA to assist the veteran in coordinating necessary care or transfer and helps to ensure that the administrative and clinical requirements for VA to pay for the care are met,” according to the U.S. Department of Veterans Affairs.

Now that we have the most important part out of the way, let’s review service-connected emergency care and nonservice-connected emergency care to assist you navigating through the process.

SCEC covers an urgent medical condition that has been adjudicated by the Veterans Benefits Administration as related to the veteran’s service and granted a disability rating. In order to meet the requirements for the SCEC, a veteran must meet the following criteria: the veteran’s medical emergency was perceived, by the veteran or another person without medical training, as life-threatening and immediate medical attention was needed. The veteran is receiving emergency care for a service-connected, or adjunct condition in a community emergency department; the veteran is disabled as a result of a service-connected condition or the veteran is participating in a VA Vocational Rehabilitation Program, and requires emergency treatment to expedite their return to the program.

For a service-connected emergency to be eligible, the emergency must meet five specific requirements. First, the veteran must have received the medical care at a hospital emergency department; second, the emergency was of such nature that the veteran or another person — without medical training, perceived it as life-threatening. Third, a federal facility was not reasonably available to provide the care. Fourth, the veteran has received care within a VA facility during the 24 months before the emergency care. Fifth, the veteran is financially liable to the emergency treatment provider.

Remember that time is of the essence, especially when it comes to submitting a medical claim. According to the VA, veterans who were treated for a service-connected emergency have up to two years from the date the emergency care was provided. Those who were treated for a nonservice-connected emergency have up to 90 days from the date of discharge.

Keep in mind that in order for your claim to be processed, you must allow enough time for the VA to receive and review your documentation. If your documents are incomplete or need further clarification, the processing of your claim might be delayed.

For more information about emergency medical care for veterans, eligibility and claims, visit www.va.gov/communitycare.com.

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