Easy money and a lack of regulation have transformed a crusade to provide death with dignity into a $22 billion industry rife with fraud, abuse and exploitation.
Half of all Americans die in hospice. To qualify for the government benefit, two doctors must certify a patient as terminally ill, with a life expectancy of six months or less. When done right, hospice offers Medicare beneficiaries an intimate, holistic and vital service — one that allows them to experience as little pain as possible and to spend meaningful time with loved ones.
But a ProPublica investigation of the hospice industry, in partnership with The New Yorker, found that the current design of the program enables some profit-seeking providers to exploit seniors with few consequences. Most hospice care takes place out of sight, behind closed doors. Because pinpointing what constitutes a “good death” is nearly as difficult as determining what makes a good life, families do not always realize when hospice is failing them.
Since 1995, the Department of Health and Human Services’ Office of the Inspector General has published warnings and reports outlining the misuse of the hospice benefit. Last year, it listed hospice fraud as the government’s top area for criminal recoveries, after the pharmaceutical and home health sectors. “It’s an open secret that hospice is one of the poster children for fraud and abuse in Medicare,” said David Grabowski, a health policy professor at Harvard who serves on MedPac, the federal advisory panel on Medicare spending.
Some hospices boost profits by signing people up regardless of whether they are dying. Marketers present the program as free home health care or steal personal information to enroll “phantom patients.” Others target assisted living facilities and nursing home residents whose life expectancy exceeds six months.
This guide can help you research your hospice provider and spot common signs of hospice fraud. It is adapted from the Senior Medicare Patrol National Resource Center, a grantee of the Administration for Community Living at HHS, that assists Medicare beneficiaries, families and their caregivers to prevent, detect and report health care fraud, errors and abuse.
Do I qualify for hospice services?
- Did your doctor determine that you are terminally ill?
- Did your doctor determine that you have less than six months to live if your illness runs its normal course?
- Are you ready to focus on comfort and quality of life rather than on curing your illness?
- Do you have Medicare Part A or are you in a Medicare Advantage plan?
If the answer to all of the above questions is yes, then you are eligible for the Medicare government benefit. You can be indefinitely recertified for hospice care beyond a six-month prognosis, and if you choose to seek curative care, you may revoke your certification.
What should I expect when I enter hospice care?
- Hospice care is palliative, rather than curative.
- Your hospice will develop an individualized written plan of care for you, which will reflect your and your family’s goals. Depending on your illness or condition, the care plan may include some or all of these services: nursing care, hospice aide and homemaker services, medical equipment and supplies, prescription drugs for symptom control or pain relief, physical therapy, social work services and grief and loss counseling.
- Your hospice is required to provide services consistent with the plan.
- There are four levels of hospice care available to patients, depending on your needs.
- Routine care: This is the most common level of care and typically happens in the home. It is provided when the patient is generally stable and the patient’s symptoms, like pain or nausea and vomiting, are adequately controlled.
- Continuous home care: This level of care is for crisis-like and short-term management of out-of-control pain and/or symptoms. The care does not have to be “continuous” to qualify but must total eight hours or more of care within a 24-hour period.
- General inpatient care: This is for a crisis-like level of care for short-term management of out-of-control pain and/or symptoms and is provided in a facility like a hospital or a skilled nursing home.
- Respite care: This level of care is intended to provide temporary relief for a caregiver. It is tied to caregiver needs and not patient symptoms. It is usually provided in an inpatient facility for up to five days.
How can I research a hospice provider for myself or my loved one?
- Learn about the benefit by reading the Medicare Hospice Booklet, which outlines the important services that hospice will provide.
- Compare providers by looking at quality-of-care metrics and reviews.
- Hospice Compare, which is found on the Medicare website, reports information on hospices across the nation. You can compare national survey rates of family members’ experiences with hospice care or some indicators of quality, like the percentage of patients checked for pain. (Not all comparative metrics, however, are available for all hospices.)
- The National Hospice Locator, an interactive map run by Hospice Analytics, allows you to search and sort hospices based on various criteria, including awards, size and for-profit status.
- Ever Loved, a bereavement services startup, offers access to reviews from families.
- Check the complaints on the Centers for Medicare and Medicaid Services website. The government publishes summaries of its investigations of complaints for hospices that have been inspected by a surveyor in the past three years.
- Ask trusted friends and medical professionals for advice.
- Interview prospective hospice providers. Some questions you might want to ask your prospective hospice provider include:
- Does the hospice accept my insurance (Medicare, Medicaid, other)?
- Are there any services I’m receiving now that the hospice can’t provide?
- How long has the hospice been serving patients in my community?
- Is the hospice a nonprofit or for-profit organization?
- Who owns the hospice and what motivated them to go into the field?
- In addition to my residence, where does the hospice provide its services? How is respite care provided when my caregiver needs a break?
- Can you confirm that the hospice will provide a hospital bed and other medical equipment I might need?
- Are the hospice physicians, registered nurses, social workers and chaplains certified in palliative care?
What are common signs of hospice fraud and abuse?
- You were enrolled in hospice without your or your family’s permission.
- You find out someone is falsely certifying or failing to obtain physician certification on plans of care.
- You were offered gifts or cash to receive hospice services, to refer your friends and family or to encourage you to elect hospice despite not being terminally ill.
- You see on your Medicare Summary Notice or Explanation of Benefits that you were billed for a higher level of care than was needed or provided or for services not received.
- You are an assisted living facility and/or nursing home resident who is being targeted for hospice services even though your life expectancy exceeds six months.
- You come across marketers using high-pressure and unsolicited tactics to peddle hospice services.
- You were provided less care on the weekends or your care plan was disregarded.
What are some of the harms of hospice fraud?
- Because people enrolled in hospice forgo curative care, fraud can harm patients who don’t intend to sign up for the service.
- Unwitting recruits have been denied kidney dialysis, mammograms, coverage for lifesaving medications or a place on the waiting list for a liver transplant.
- While it’s possible to leave hospice at any time by contacting one’s provider, fraudulent hospices don’t always pick up the phone when their “patients” try to disenroll and it can take weeks to leave the service.
- For patients who need hospice care, inadequate care by fraudulent providers can leave patients in agonizing pain or with uncontrolled symptoms.
How can I report a problem if something has gone wrong?
If you suspect Medicare fraud, errors or serious patient injuries, here are some of the steps that you might take.
- Talk to your provider: If you feel comfortable doing so, call your hospice provider to get more information on your or your loved one’s Medicare Summary Notice or Explanation of Benefits.
- File a complaint: If you’re experiencing quality of care issues, you can file complaints with your state health department and the Beneficiary and Family Centered Care-Quality Improvement Organization.
- Revoke or change providers: You can research other hospice providers in your area, and you may change your designated hospice provider.
- Report directly to the OIG Hotline: 800-HHS-TIPS (800-447-8477).
- Ask for help from your Senior Medicare Patrol: If you are not comfortable calling the provider or if you are not satisfied with their response to the potential error or your question, your local SMP can help you:
- Identify and report fraud schemes and deceptive health care practices, such as illegal marketing or billing for services that were never provided.
- Refer complaints of potential fraud and abuse to the appropriate entity, who can intervene. For example:
- HHS’ Office of the Inspector General.
- Centers for Medicare and Medicaid Services: 800-MEDICARE (800-633-4227).
- State attorneys general.
- Local law enforcement.
- State departments of insurance.
- State Medicaid Fraud Control Units.
- Use the SMP Locator to get contact information (or call 877-808-2468).