Genetics, Genomics & Liquid Biopsies: How Do They Apply to You

Genetic Testing vs. Genomic Testing

We all know that our DNA can be very useful in figuring out what part of the world our Genetics Genomicsancestors hail from, but can understanding our DNA really help in the treatment of cancer? For more and more of us the answer is yes.  Thanks to the advances in genetic and genomic testing, doctors are able to offer targeted therapies based on the results of these tests.  But what the difference between genetics and genomics?

  • Genetics is the study of heredity (genes that you inherited from your parents)
  • Genomics is the study of genes and their functions

Genetic testing detects hereditary alterations in DNA, while genomic testing detects acquired (over the course of a lifetime) alterations in DNA.

Some of the common mutations we’ve heard about, like BRCA1 and BRCA2 are examples of genetic mutations (germline mutations). These genetic mutations are passed on from parent to child, and increase an individual’s chance of developing certain types of cancers. For example, if you have a BRCA1 mutation, you have a higher risk of developing, breast, ovarian, pancreatic, and prostate cancer.

In addition to genetic testing, there are now genomic tests that can look at certain tumors and identify which therapies might work better against those tumors. These are called targeted therapies. For example, there is now a genomic test that can look at the tissue of an ovarian tumor to detect BRCA mutation types that may benefit from a targeted therapy called a PARP inhibitor.

All genetic or genomic testing is done by analyzing a biopsy.  Traditionally this has meant a tissue biopsy.  Unfortunately, not all tumors are easy or comfortable to access for a biopsy.  Often tissue biopsies mean invasive procedures like surgery, which isn’t always an option because of poor health or the location of the tumor.  Thankfully there is a new hope: Liquid Biopsies.

What are Liquid Biopsies?

Liquid biopsies are blood tests that are analyzed to assess mutations and other changes in a tumor’s DNA. This is possible, because tumors continually shed dead cells into the blood stream.

On June 1, 2016, the FDA approved the first liquid biopsy test for use in cancer treatment. The test detects key mutations in the EGFR gene that makes patients with advanced non-small cell lung cancer candidates for a specific treatment option. Previously, tumor specimens were used to detect these mutations.

At this point, these tests may be most valuable to patients with advanced stage cancer. They can be used to monitor changes over time and direct treatments when tumors recur or progress. Eventually, liquid biopsies may be able to help direct care for patients with earlier-stage cancer or help monitor disease progression in people with precancerous lesions. Scientists caution that more research is needed before liquid biopsies are used routinely in cancer care, but this is an area of intense study, so the future looks bright. The scientific advances in genetic and genomic testing as well as liquid biopsies are allowing cancer patients to benefit from this new era of precision medicine.

For more information about genetics and genomics, watch our webinar recording.

Six Key Things You Need to Know During Open Enrollment

Open enrollment for plans sold in the Marketplaces started yesterday and we have Six Key Things to Know Open Enrollmentbeen hearing that there is still a lot of confusion. As a reminder, open enrollment is the time of year consumers can shop for a new plan or make changes to existing plans. For Marketplace and Medicare plans the plan won’t start until January 1, 2018. Employer plans may have different start dates, so check with your employer. Here are six key things you need to know during open enrollment:

  1. Health insurance can be confusing.
    1. Make sure you understand the key terms used in your health insurance policy. Watch our new video – Triage Cancer Presents: Health Insurance Basics to learn more. This information is useful regardless of where you get your health insurance coverage.
  2. Financial assistance still exists for most people who purchase plans in the marketplace.
    1. For 2018, 8 in 10 people have Marketplace health insurance options for $75 or less, a month. This is mostly due to the premium tax credits available to people based on their income level.
    2. Even though the Administration has said that they will no longer pay the insurance companies back for providing cost-sharing subsidies (aka cost-sharing reductions), the insurance companies still have to provide those discounts to consumers.
  3. Individuals shopping for insurance (regardless of where they get it – Medicare, employers, private companies), should be sure to do the math when comparing options!
    1. Often times we only look at the monthly premium of a plan. However, to accurately determine what a plan with cost you for the year, you have to do the math! Assuming that a consumer will reach their out-of-pocket maximum during the year, the way to do the math is to multiply the monthly premium by 12, then add that amount to the plan’s out-of-pocket maximum. You may be surprised to find that the bronze plan may not be your most affordable option.
    2. Consumers should also look at the network of doctors and hospitals, the other costs (e.g., co-payments, deductibles, etc.), and prescription drug coverage.
    3. For more information on how to pick a plan watch our webinar, Choosing Wisely: How to Pick an Insurance Plan or visit CancerFinances.org.
  4. Individuals who are eligible for Medicare are not eligible to purchase plans in the Marketplace. Visit http://medicare.gov for more information about plan options.
  5. Be wary of short-term health insurance plans.
    1. These plans may look attractive based on their low cost, but they are not considered creditable coverage and when they end, consumers typically aren’t eligible for a special enrollment period to buy a plan in the Marketplaces, which could leave them with a gap in coverage. Additionally, they do not have to include the consumer protections in the ACA and may be able to charge people with cancer more, or exclude covering cancer treatments.
  6. Open enrollment dates may vary depending on where you live.
    1. The federally run Marketplace will be open from November 1 – December 15; however, some states have extended their open enrollment periods.
    2. There are also some extensions available for people who were affected by the recent hurricanes. (see the link above)

Making the Most of Ticket to Work

Tai Prohaska, MPH
Manager of Strategic Alliances, Allsup

If you had to stop working due to cancer, and were awarded Social Security Disability Ticket to WorkInsurance (SSDI), you could benefit from Social Security’s Ticket to Work program. Research shows that the longer a person is detached from the labor force, the less likely it is they will return to work. If and when you are medically able to try some kind of work, this program makes it easier for you to test whether you are ready to work, without the fear of losing your SSDI and Medicare benefits.

Many people are able to earn much more through work earnings than they receive in SSDI benefits, and those earnings go toward your future Social Security retirement benefits.  In addition, there are important personal rewards, including retrieving an important part of who you are through your work, discovering purpose in your day and belonging with others, and providing vital security for your future.

To make the most of the program, it helps to understand these Ticket to Work basics:

  • Employment Networks (ENs). More than 600 ENs across the U.S. offer a range of free support services through the Ticket program. Some ENs serve specific populations, while others provide specialized support services. You can click here to search for an EN. You can also visit Allsup Employment Services, which supports individuals with exploring their interests, understanding their skills, and pursuing their employment options. Once employed, they provide support to address issues such as improving energy and stamina for a full-time job, discussing job accommodations with employers and complying with Social Security’s reporting processes, to protect benefits for the long-term.
  • Trial Work Period (TWP). You can keep your SSDI cash benefits while testing your ability to work for nine months.  You have a safety net where you can test your ability to work again and receive your full SSDI benefits in addition to your job earnings.
  • Extended Period of Eligibility (EPE).  After Your TWP ends, you will get full SSDI benefits for the first three months of this 36-month period in addition to your job earnings. After that, you are eligible to receive SSDI benefits for any month your job earnings drop below substantial gainful activity (SGA).  In 2017, SGA is $1,170 for non-blind individuals and $1,950 for blind individuals.
  • Continuing Medicare Coverage. After your TWP ends, your Medicare coverage continues for up to 93 consecutive months. You still receive coverage during this time even if your SSDI payments end.
  • Expedited Reinstatement of Benefits.  If you become unable to work again within five years after your EPE ends, you can request to have your SSDI benefits restarted without filing a new application.
  • Continuing Disability Review (CDR) Protection. Social Security periodically reviews disability claims to determine if you still qualify as disabled.  As part of the Ticket to Work program, you are exempt from medical CDR and your status remains unchanged.

If you are ready and medically able to return to work, taking advantage of the Ticket to Work program can help prepare you for success. To learn more, visit https://choosework.ssa.gov.

Clarifying Open Enrollment

There has been a lot of confusion about open enrollment for health insurance coverage in the news and on social media and we want to clarify some things and share some news:

  1. Open enrollment to buy coverage for 2018 through the State Health Insurance Marketplaces has been cut from 12 weeks to just 6 weeks, running from November 1 to December 31. However, there are some additional things you need to know:
    1. If you live in one of the states below, your state may have decided to keep open enrollment open longer:
      • California – November 1 to January 31
      • Colorado – November 1 to January 12
      • D.C. – November 1 to January 31
      • Massachusetts – November 1 to January 31
      • Minnesota – November 1 to January 14
      • Washington – November 1 to January 1
    2. If you were affected by Hurricanes Harvey, Irma, or Maria, you also have access special enrollment periods, which extends the time you have to get coverage in 2017 or enroll in coverage for 2018.
      • Group A:
        • Timing: The date of the SEP qualifying event through December 31, 2017.
        • Eligibility: Individuals who experienced an SEP qualifying event between 60 days prior to the start date of the incident period and December 31, 2017 and reside, or resided at the time of the hurricane, in any of the counties declared as meeting the level of “individual assistance” or “public assistance” by FEMA.
        • What to do: Contact the Marketplace Call Center at 1-800-318-2596.
      • Group B:
        • Timing: December 16, 2017 through December 31, 2017.
        • Eligibility: Individuals who reside in or move from areas affected by a hurricane in 2017, who are applying for 2018 coverage.
        • What to do: Contact the Marketplace Call Center at 1-800-318-2596 to request an enrollment after December 15, 2017.
  1. Medicare open enrollment occurs each year for people to enroll or switch Medicare plans and prescription drug plans. Medicare open enrollment runs from October 15 to December 7, but the Centers for Medicare & Medicaid Services have announced a special enrollment period to give people more time to enroll due to the recent hurricanes.
    1. Timing: From the start of the incident period through December 31, 2017.
    2. Eligibility: Individuals who reside, or resided at the start of the incident period, in an area for which the Federal Emergency Management Agency (FEMA) has declared an emergency or a major disaster; individuals who do not live in the affected areas but rely on friends or family members who live in the affected areas for help making health care decisions.
    3. What to do: Contact 1-800-MEDICARE to access the special enrollment period. Click here for more information.

Remember, with both Medicare and Marketplace plans, when you sign up for coverage in open enrollment, you coverage won’t actually start before January 1, 2018.

If you need coverage now, visit CancerFinances.org or watch our webinar recording on how to pick a health insurance plan, to see if you have other options.

Health Care in the News: Keeping Down Costs

  1. Cost-Sharing Reductions: On Thursday, 10/12, the President announced the discontinuation of cost-sharing reduction payments (CSRs) for health insurers that sell plans in the state Health Insurance Marketplaces.
    • For those who choose to buy health insurance coverage through the marketplaces, they may be eligible for 2 types of financial assistance: 1) premium tax credits; and 2) cost-sharing reductions. Premium tax credits reduce your monthly premium payment for whichever plan you choose to buy in the marketplace. Cost-sharing reductions are a requirement in the ACA, that insurance companies lower the cost of deductibles, co-payments, and co-insurance amounts on silver level plans, based on your income level. The cost-sharing reductions are provided by the insurance company, but are reimbursed by the federal government.
    • Since taking office, the President has indicated that he might end the CSRs. His lack of a definitive decision creative uncertainty for insurance companies in determining their rates for plans sold in the marketplace for 2018. This uncertainty actually cause may insurers across the country to choose not to sell plans in the marketplace for 2018, which ultimately reduces competition and increases rates for the plans that are sold in the marketplace. Some companies decided to continue to sell their plans, but increased their rates, to cover the loss of the CSR payments from the federal government.
    • It now falls on Congress to fund the CSR payments for 2018 and beyond. There is currently a proposal being discussed in the Senate to fund the CSR payments for two years, but it includes other changes (see below).
    • On Wednesday, 10/18, eighteen states filed a temporary restraining order to force the President to continue funding the CSR payments.

Alexander-Murray-Keeping-Costs-Down

  1. Alexander-Murray Legislation: On Wednesday, 10/18, in response to the President’s decision to end the CSR payments, U.S. Senators Lamar Alexander (R-TN) and Patty Murray (D-WA) reached a bipartisan compromise that is an important first step to stabilize health insurance markets and provide states more flexibility, while maintaining important patient protections.
    • They have proposed bi-partisan legislation, which will likely keep health insurance costs lower for consumers. This legislation is supported by nearly 30 cancer organizations representing patients, physicians, nurses, and social workers, because cancer patients and survivors need access to quality, affordable health insurance. However, there are some political compromises included in this bill.
    • This bill funds the CSR payments through 2019 and restores some of the funding that was previously cut by the President, for outreach and education about open enrollment and health insurance options.
    • This bill also takes some steps to expand access to catastrophic health insurance plans, which could allow more people to afford health insurance, but there is also serious concern about the limited coverage included in these plans. It also allows states flexibility to waive some of the ACA requirements for plans sold through the marketplace. Again, while it may expand access, there are some questions about the coverage included in those plans.
    • At this time, it is unclear if there are enough votes to pass this legislation. If you would like to share your opinion or experience, you can contact your U.S. Senators by calling: 844-257-6227.
  1. Executive Order: On Thursday, 10/12, the President also signed an Executive Order, which allows insurance companies to sell policies across state lines and to sell cheaper policies with less coverage than currently required under the ACA. The challenge with this proposal is that:
    • It allows insurance companies to avoid state health consumer protections.
    • It also creates a situation where people can buy minimal health insurance coverage, but if they are diagnosed with a serious medical condition like cancer, then they find out that those policies don’t cover needed medical care, like chemotherapy.
    • The Executive Order requires federal agencies to draft regulations, share the draft for public comments, and then release final regulations on these changes.

As these events unfold, Triage Cancer will continue to provide updates on these changes and how they may have an impact on the cancer community. Stay tuned.

Balance Billing: What You Need to Know

In order to avoid unexpected medical bills, it is important to know how your health plan Balance Billingworks and how a practice referred to “balance billing” can affect you. Most plans have a specific network of doctors and facilities that their members can use for their medical care. To be a part of a plan’s network, these doctors and facilities contract with the plan and agree to accept a specific rate for their services under the plan. These doctors and facilities are considered “in-network.” Doctors and facilities that don’t have a contracted relationship with an insurer are considered “out-of-network.”

The main difference between in-network and out-of-network healthcare providers is that in-network healthcare providers work with your insurance company to provide negotiated (discounted) rates, while out-of-network providers do not agree to discounted rates. For example:

You visit an in-network doctor and the total charge is $250. The doctor and your plan have negotiated a $75 discount. The plan then pays the doctor $140 (which they have agreed is the “allowed amount” for the doctor to receive). You then have to pay the remaining $35.

But, if you visit an out-of-network doctor and the total charge is $250 and there is no negotiated discount. The plan pays the doctor $140, but you’ll be responsible for the entire remainder, which is $110.

The latter part of the example regarding out-of-network doctors is an example of “balance billing.” Balance billing occurs when out-of-network doctors and facilities bill patients for the difference between a billed charge and a health plan’s allowed amount. However, this type of balance billing is typically not allowed when:

  • you have Medicare and you’re using a healthcare provider that accepts Medicare assignment;
  • you have Medicaid and your provider has an agreement with Medicaid; or
  • your doctor or facility has a contract with your health plan (in-network) and is billing you more than your plan’s contract allows.

Patients can also face balance billing when they receive care from a provider they did not know was out-of-network. For example:

You are going to have surgery at a hospital.  Both your surgeon and the hospital are in your plan’s network.  But during the surgery you need anesthesia so that you are not awake. The person who gives you the anesthesia, the anesthesiologist, whom you did not choose, is not in-network. A few weeks later you receive a large bill from the anesthesiologist, who was not covered by your plan. 

This is another example of balance billing, or “surprise billing.” Patients who think that they are being careful to only visit in-network providers are often surprised by these bills. Another example of when this often happens is when your doctor sends your blood to an out-of-network lab for testing. You can avoid this by asking your doctor to make sure they are using an in-network lab for your plan.

These situations can leave patients with huge medical bills that they are unable to pay, and can even lead to bankruptcy.

Some states have tried to protect patients from balance billing. For example, on July 1, a California law went into effect that says, if you have a non-emergency service and visit an in-network facility (like a hospital or a lab), you will only be responsible for your in-network share of the cost even if you’re seen by an out-of-network provider.

This is a giant step in terms of healthcare and patient care, as a recent Consumers Union survey found that nearly 1 in 4 Californians who visited a hospital or had surgery in the past two years were charged an out-of-network cost when they thought the provider was in-network.

In addition to knowing how to use your plan, you also need to make sure that you understand what type of plan you have. Because, the California law does not cover employer-sponsored plans that are self-insured. To find out of your plan in self-insured, you can call the number on your insurance card, or talk to your employer’s human resources representative.

New York and Florida also have comprehensive state laws to protect patients from balance billing. But there are a total of 21 states that have laws that deal with balance billing. To check if your state has a law protecting you from balance billing, visit Triage Cancer’s Chart of State Laws.

If you think you are being balance billed, there may be steps that you can take to deal with the bill.

10 Ways Medicaid Affects Us All

Medicaid was created in 1965 as a program for the poor. Today, it helps 74 million people — more than 1 of every 5 people in the U.S. You or someone you know likely benefits.

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Sources: George Washington University study/Women’s Health Issues journal, The Kaiser Family Foundation

Big School Booster

Medicaid paid for nearly $4 billion in school-based health care services in 2015.

Dependent Children

Medicaid aimed, at its start, to insure healthy children and pregnant women. Children are still the largest demographic group served. How Medicaid coverage breaks down:

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Where The Money Goes

But a look at who benefits from Medicaid spending shows a different story.

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Sustaining Livelihoods

About 60 percent of non-disabled Medicaid adult enrollees have a job.

 

 

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Coverage Forecast

Most Medicaid enrollees churn in and out of the program every few years, depending on their circumstances. Odds are 1 in 4 you might need this safety net one day.

The article in its entirety can be found here. This story was produced by Kaiser Health News, an editorially independent program of the Kaiser Family Foundation

 

Volunteering While on FMLA – Risking Your Job?

We often get questions about what an individual is allowed to do while on leave under Volunteering-on-FMLAthe FMLA. For example, can you engage in contract work, work a second job, or volunteer on FMLA leave? Like many issues around work and cancer, there isn’t a one-size fits all answer.

The Family and Medical Leave Act (FMLA) is a federal law that allows eligible employees to take time off from work, for up to 12 weeks, because their own serious medical condition prevents them from working, or to act as a caregiver for a seriously ill spouse, child, or parent.

To be eligible for FMLA leave, individuals must have worked at their place of employment for a minimum of 12 months, and worked over 1,250 hours, in the last 12 months. Also, private employers must have more than 50 employees in order to be covered by the FMLA. For more information about the FMLA, take a look at our Quick Guide.

The FMLA does not expressly prohibit individuals from working another job while on FMLA leave (sometimes referred to as moonlighting, but we also know that many people regularly work more than one job). “Employers with established policies regarding outside employment while on paid or unpaid leave may uniformly apply those policies to employees on FMLA leave. Otherwise, the employer may not restrict your activities.” Keep in mind, some states may have laws that might impact an employee’s ability to work other jobs while on leave.

If you are taking time off under the FMLA because a medical condition keeps you from working, and you chose to volunteer or work another job while on FMLA, and your employer finds out, they are allowed to ask questions regarding your responsibilities and your ability to work. Employers may question your responsibilities at you other job, to ensure that they are not similar to what you do while working for them. Therefore, it may be in your best interest to check with your employer about their policies around working another job or volunteering while out on FMLA leave.

For more information, visit https://www.dol.gov/whd/regs/compliance/1421.htm.

How to Get a Better Night’s Sleep During and After Cancer Treatment

Sleeping well during and after cancer treatment can be a challenge. Cancer patientsSleep-Better often experience pain, fatigue, and discomfort that interferes with sleep.

While it’s not always easy, it’s important that you get the best sleep possible, as sleep deprivation can weaken your immune system and make symptoms or side effects, such as chemo brain, worse.

Improving sleep hygiene, treating sleep disorders, and participating in cognitive behavioral therapy can help cancer patients get better sleep.

How Cancer Affects Sleep

Sleep disturbances are not unusual among cancer patients. Between 30 to 75% of cancer patients experience sleep problems. Unfortunately, sleep problems can persist even after treatment has ended, with 25% of survivors reporting continued difficulty sleeping.

Cancer side effects and treatment can make it more difficult to sleep. Increased anxiety and depression can make way for insomnia. And with extensive treatment, you may be fatigued and experience cancer-related sleep disorders. It’s also common to experience hot flashes and night sweats. Sleep disorders can be serious and require treatment to improve your ability to sleep, as well as your quality of life.

How You Can Sleep Better During and After Cancer Treatment

Better sleep habits and treatment for sleep disorders associated with cancer can improve your sleep during and after cancer treatment. Try these tips and methods to improve your sleep:

  • Choose comfortable bedding materials: Cancer patients who experience night sweats or hot flashes may have difficulty sleeping due to heat. You should lower your bedroom temperature, and choose bedding and clothing that sleeps cooler and is more breathable. If you are experiencing discomfort and sensitivity to cold from chemotherapy, a memory foam mattress can offer softness and heat retaining properties.
  • Maintain a sleep routine: Go to bed at the same time every night, even on weekends, to help train your body to go to sleep at a regular time. You can support a regular sleep schedule with a sleep routine, going through the same actions before bed each night. Your routine can involve stretching, brushing your teeth, reading, and other nighttime tasks. The exact actions you do aren’t as important as doing them on a regular basis.
  • Try cognitive behavioral therapy: This therapy is helpful for insomnia, using techniques to reframe your emotions and thoughts around sleep. You will learn relaxation techniques and deep breathing exercises to help you fall asleep. You may also promote restfulness with progressive muscle relaxation and other therapeutic techniques.
  • Get treatment for sleep disorders: If you’re suffering from sleep disorders, it’s a good idea to talk to your doctor about treatment so you can get better rest. Good sleep is important. Sleep disorders may include those that are common among cancer patients, including insomnia, excessive daytime sleepiness, or restless legs syndrome, but other disorders, such as sleep apnea or narcolepsy, should be addressed as well to improve your sleep quality and quality of life.

Sara Westgreen is a researcher for the sleep science hub Tuck.com. She sleeps on a king size bed in Texas, where she defends her territory against cats all night. A mother of three, she enjoys beer, board games, and getting as much sleep as she can get her hands on.

Medicare and Hospice Care

Hospice is a program of care and support for people who are terminally ill. The focus ofHospice Care hospice care is on ensuring patient comfort, and not on curing an illness. In hospice, a specially trained team of professionals and caregivers provide care for the “whole person,” including physical, emotional, social, and spiritual needs. There are hospice facilities, but hospice care is generally provided in the home. Medicare can help cover some of the hospice care costs.

Hospice care can be a blessing for those suffering from a terminal medical condition and can even include specialized care, such as reading to a patient, playing music, and companionship. Hospice care providers can also provide respite for caregivers.

Medicare recognizes the importance of hospice and covers it fully. Meaning even if you only get Medicare Part A (hospital coverage), which is the minimum Medicare coverage, you will be fully covered for hospice care. Once you start getting hospice care, your Medicare hospice benefit should cover everything you need related to your terminal illness if your care comes from a Medicare-approved hospice provider. If, while in hospice, you need care that is not associated with your terminal illness (for instance, you fall and break your arm), you would be covered by your regular Medicare or Medicare Advantage plan benefits.

If you have determined that you no longer want to pursue curative treatment for your medical condition, you should discuss your decision with your health care team. Your health care team can help you coordinate hospice care. You always have the right to stop hospice care, and seek a curative treatment, at any time.

However, while in care of a Medicare-approved hospice provider, Medicare will not cover any of the following:

  • Prescription drugs (except for symptom control or pain relief).
  • Care from any provider that wasn’t set up by the hospice medical team. You must get hospice care from the hospice provider you chose. All care that you get for your terminal illness and related conditions must be given by or arranged by the hospice team. You can’t get the same type of hospice care from a different hospice, unless you change your hospice provider. However, you can still see your regular doctor or nurse practitioner if you’ve chosen him or her to be the attending medical professional who helps supervise your hospice care.
  • Room and board. Medicare doesn’t cover room and board. However, if the hospice team determines that you need short-term inpatient or respite care services that they arrange, Medicare will cover your stay in the facility. You may have to pay a small copayment for the respite stay.
  • Care you get as a hospital outpatient (like in an emergency room), care you get as a hospital inpatient, or ambulance transportation, unless it’s either arranged by your hospice team or is unrelated to your terminal illness and related conditions.

For more information on hospice care, please review: Hospice FAQs from the National Hospice and Palliative Care Organization.

For more information about Medicare’s coverage of hospice benefits, you can read: Medicare Hospice Benefits.