Like many Americans, I have a story about hospice care for a loved one. When my father was dying from complications of dementia and diabetes, hospice caregivers sat with him, provided pain relief, and helped him be comfortable. They also gave my mother peace of mind that her beloved husband was receiving kind attention in his final weeks. To this day, she refers to those hospice workers as angels.

Sadly, not every family’s story is a positive one.

Some patients experience days of pain or severe anxiety because their hospices fail to provide pain management and other needed services. Some are signed up for hospice without their knowledge, including some individuals who are not terminally ill.

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The Department of Health and Human Services’ Office of Inspector General, for which I work, recently published a report examining hospice practices over a decade. It showed that hospices do not always provide the services that patients need and sometimes provide poor-quality care. We also found that patients and their families often do not receive crucial information to make informed decisions about hospice care.

We uncovered multiple abuses in our investigations:

Hospice recruiters inappropriately promised Medicare beneficiaries free housecleaning and other services that are not provided through hospice without telling them they would be signed up for the hospice benefit. That means they unknowingly gave up treatments that could cure, or at least manage, their conditions and instead received only palliative care.

In a North Texas case, nurses allegedly gave high doses of drugs such as morphine, regardless of whether patients needed it, to justify receiving the higher hospice payments. Some of these excessive dosages resulted in significant injury or death.

Or take the case of Larry Johnson’s 87-year-old mother, who had dementia. Two days before she died, he learned that she had been enrolled in hospice more than a year earlier, a decision that an individual with dementia shouldn’t make without assistance. “My mother needed basic care, but not hospice ― and especially not for a year and then some!” Johnson said in an interview with our staff.

Our investigation in her case yielded results: The owner of that hospice company received a 6-1/2-year federal prison sentence for running an elaborate, $20 million hospice scheme that signed up patients who were not dying. The hospice is permanently closed.

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The idea that hospice care could abuse and neglect patients when they are at their most vulnerable, or exploit them for unjust enrichment, is repellent.

Because taxpayers bankroll poor care and fraud through the Medicare hospice benefit, policymakers need to take immediate action to implement safeguards against fraud, waste, and abuse of this important benefit.

Growth in the use of hospice makes it even more important to take action now. The latest Medicare data show that hospice use has grown over the past decade: In 2006, Medicare paid $9.2 billion for fewer than 1 million beneficiaries in hospice care. Ten years later, it paid $16.7 billion for more than 1.4 million beneficiaries.

Quality hospice care can provide significant comfort and support to terminally ill patients and their families and caregivers. But we must take steps to prevent both the very human toll and the economic toll that hospice fraud takes.

The Inspector General’s office made recommendations to the Centers for Medicare and Medicaid Services, which runs Medicare, in seven key areas. Although CMS did not agree with a number of them, we believe they are essential for weeding out poorly performing and unscrupulous hospice providers:

  • Congress should give CMS the authority to hold poor performing hospices accountable and take swift action when warranted.
  • CMS should take steps to tie payments to patient care needs and quality of care, rather than the current approach of paying a flat rate regardless of how many services a hospice provides, which can create incentives to minimize services and seek patients with uncomplicated needs.
  • CMS should provide more information to the public, especially Medicare beneficiaries, about hospice performance so consumers can effectively compare hospice providers. CMS now provides such information for nursing homes on its Nursing Home Compare website; a similar offering for hospice on Hospice Compare would help consumers make informed choices.

Patients and their family members can help guard against fraud by carefully reviewing the summary notices they receive from Medicare detailing the services for which Medicare has been billed on their behalf and report those that were not authorized or received.

Medicare beneficiaries who elect hospice care should receive high-quality services, and hospices should act with integrity when billing government health programs. Most already do that, and assist dying patients with dignity and compassion.

We strongly urge CMS and Congress to implement our longstanding recommendations to protect patients and their families from hospice providers that are exploiting this vital service.

Joanne M. Chiedi is the principal deputy inspector general for the Department of Health and Human Services.

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  • Trying to report agency in Oklahoma for home health fraud. Contacted several state agency without success against Carter home health

  • My mother I had been primary caregiver for 6 years has been on hospice for almost 2 years died a week ago today. She had a ER visit a few months ago from an episode that scared my brother. About 3 days later she had a red spot appear in the sacral area. Hospice nurse said it was the beginning of a pressure ulcer. She showed me how to apply bandages for that area to protect the area. The next week during her visit she asked me how it was doing. I told her it was healed and looked like it was never there. She didn’t offer to look and didn’t offer more bandages. I thought that was the end of that. On Monday Feb 28th I noticed what appeared to be to fingernail marks in the same area. While having diaper changes mom had a habit of reaching back scratching her bottom at times drawing blood. I cleaned the area and each day it looked worse. I cleaned and bandaged it. The nurse came on the 31st. Took mom’s vitals and came in the kitchen to check on meds. I told her mom had a sore on her bottom that was getting bad fast. She told me she would bring supplies the next morning and she had to go because she had an admission. The next day never got supplies. Around 4 pm I talked to social services and told him about the sore and that I hadn’t gotten the supplies. He said he would check in to it. He was trying to talk me into sending mom to nursing home for respite for five days. I didn’t want to put mom through that. I never got the supplies. I did the best I could through the weekend to protect the sore and keep her propped. On Monday I agreed due to the sore which continued to worsen no matter what I was doing to help it. She was carried out of the house in a sheet by me, my brother and to transporters that had no clue what they were doing. We had to coordinate the transfer for them! At the nursing home I was asked about the sore by the DON. I told her the whole story and how I was ignored by hospice. She gave me a WOW look. She also told me that the beginnings of the pressure ulcer from the ER visit probably never healed from the inside. Mom had been bedridden while on hospice and legs, left arm and hand very contracted. We excercised her in the beginning. It caused her pain. We were told to stop if it hurt. Mom’s thumb was stuck under her folded fingers. In the nursing home the pulled it out bruising her to do so. I witnessed hospice CNA grab mom by the ankles and throwing her legs way up in the air to get a pillow under her legs. Mom screamed in pain even though she was so drugged. I held my composure and comforted mom. I got her calmed. A few minutes later a nurse and another lady came in and told me I had to leave because there was an investigation going on. I was in shock! They told me investigators name. I left shaking and crying. I didn’t even say bye to mom. The next few days were horrific to say the least. Mostly a blur. Went to hospice caused a scene. They called the law. I was asked to come to Sheriffs dept. at 11 am. All this is happening on moms Birthday. While talking to investigators I was asked about the sore. I told them all about it and how I was ignored by hospice. They were treating me like a criminal! When I told them I wasn’t talking anymore without an attorney. They arrested me! I was in total shock! It was a nightmare. I had never been in any kind if trouble. All I could do was cry and repeat over and over that I had not done anything wrong . My children bonded me out the next day. I was charged with neglect and exploitation. My children got permission to go see mom. The nursing home was keeping her so drugged. She died that Sunday in that hell hole all alone!! Our entire family are numb and angry. Me and my brother were stripped of her last Birthday and the opportunity to be with her when she took her last breath…to say goodbye and how much we love her. We took great care of mom. Everyone who came to visit her at home always told us we were doing a great job with her. She gave me POA over her in 2013. She begged me to never put her in a nursing home. I was already a private caregiver so she asked me if I would pay me and my brother with her money to keep her out of a nursing home. I promised her I would. She didn’t have much money. She got a retirement pension and social security. I never spent hardly a dime on myself. I was to busy caring for mom. I gave up my whole life for 6 years! I was always told that God will bless me. I will have to sell my home and property to defend myself. I have hired a defense attorney. This is all so new for me. I have many great witnesses. All I can do is pray. The advice I have for anyone who is a caregiver. Seek an attorney. I was taking care of my own mother! If this can happen to me…it can happen to you. Take pictures, recordings or whatever it takes to protect yourself. It’s to late for me. I don’t know what my future holds. I’m 57. I feel broken.

    • Judy,

      I am so sorry, but your experince is not that unusual. The staff at these places is very good, at threatening patients and their families. They work hand in hand with the agencies that were supposed to be protecting patients. The routinely threaten family members or the patients. I found that they are protected from any kind of actual oversight. These corporation pay off local politicians and regualtors, the inspeactions and “quality” assuracnes are a farce. Typically the people that work there are dangerous psychopaths, except for the heard working immigrants who do the work. The administrative positions are filled by people with connections to the regulators.
      What I found really troubling was the conspiracy of silence, with the physicians. They were from a local religious non profit hospital, that used the nursing home for patients dumping. They do this to get around death reporting at hospitals. They quickly transfer patients who are dying to these complicit nursing homes, to avoid counting the deaths.

  • Look into Buena Vista Knolls in Vista, CA. They put my x husband’s grandmother there without consent and we had to bust her out. She lived two years after that, as tgere was nothing terribly wrong with her. People were crowded 6 to a small room and nobody was answering the calls when people needed help to the bathroom. Horrible place. Poor people. Most were alert and fine but elderly without family and tgis place was trying to get them to sign paperwork to give over their entire estates. I would not let Grandma sign the paperwork and we busted her out after her daughter travelled 1000 miles to get there because they were not going to allow her to leave.

  • I am under care of hospice. I need oxygen therapy. I have asked for a better product. I wish to travel to see my family in Florida. Hospice refused my request for an inogen oxygen exchange concentrator. I need help. They want me to use morphine but I refuse
    .

  • Hospitals are billing Medicare fraudulently. Such is the case of my Medically Murdered husband at St
    Joseph Hospital in Nashua, NH and I’m sure there are manyy more using fraudulent billing practices to cover up non-consensual Hospice/Palliative care. The hospital didn’t put in claims under Hospice/Palliative care because they said he wasn’t enrolled in it. Legally he wasn’t enrolled. They ILLEGALLY, without our knowledge most definitely put him on Hospice/Palliative care AGAINST our wishes. Medical file documentation states he was put on Hospice. The Doctor that ILLEGALLY put my husband on it was paid by Medicare. The Hospice/Palliative care Doctor who overdosed him with MORPHINE and the Hospice/Palliative care Nurse Practitioner that ultimately killed him was paid by Medicare. If the Hospital filed claims under Hospice/Palliative care, they knew they wouldn’t get paid because it was ALL Illegal.
    Also a law went into effect in 2009 which states Medicare will NOT pay bills for patients with hospital acquired infections. So why did Medicare pay when my husband had a UTI, Pressure Ulcers AND SEPSIS he acquired at St. Joseph Hospital?ALL left untreated. ALL unbeknownst to me, my husband AND my family. Yes, my husband was Medically Murdered and Medicare paid for his DEATH!!! WHY???

  • Joanne: All of the instancss in this article referring to the absusive practices of some hospices is indeed true. One lagging factor is the time from complaint to action is so stretched out that folks get disheartened. Having said that, instead of punishing all for the fault of the few, it would be highly effective if a rapid response to irregular or non-compliance practices, starting with the OIG hotline would be a good deterrent to start with. Having been in the industry, we have seen the abusers keep adapting to the regulations while the ethical organizations continued to be squeezed because of their commitment to good practices and patient centered care. In one word, unleash the OIG into action and you will see a rapid drop in such behavior.

  • I have filed complaints several times as to Medicare paying for Hospice/Palliative care which we refused. My husband was put on it UN-knowingly. We were told nothing. CMS tried telling me Medicare was never billed for Hospice/Palliative care and tried to tell me my husband wasn’t on it. I sent the proof showing he was put on it and Medicare paid for it. There were no consent forms signed because we never agreed. My husband told them he wanted treatment, not death. He got no treatment. He was overdosed with Morphine and was never treated for an infection he had, or the UTI he got which turned into SEPSIS, left untreated and he died from it. Medicare Fraud? It sure is! https://inmemoryofbillknightly.blogspot.com/2017/12/why-is-medicare-paying-for-illegal.html Why is Medicare Paying For ILLEGAL Hospice/Palliative Care?

    • Filing Complaints is a waste of time. These corporations have figured out how to easily game Medicare. They also found that with their money they can easily deceive any local authorities. What we have here is weaponized greed, where under-staffing is by design, it can be profitable for providers. For example, they leave patients sitting in their own feces for days, and then charge Medicare a tidy amount to treat the resulting UTI infections. These corporations have bought the silence of Physicians, Nurses and so called “Advocates.” The Advocates and Ombudsmen work for the Institutions, not the patients.”
      It is really clever how these corrupt corporations are able to continue to bill Medicare, after thousands of complaints, deaths and adverse events. In many communities they are portrayed by the local news as “Job Creators.” They have a revolving door with the state agencies that were supposed to be monitoring them. They also manged to get ignorant journalists to portray them like the TV Show, “Better Call Saul.”
      CMS Data collecting is not set up in a way that would recognize patient dumping or injuries due to neglect. The constant nursing home Lawyer ads, give people the false idea that there is some kind of legal issue, while they only take jackpot obvious cases.
      A company called Preferred Partners LLC was able to pay off local politicians and get a friendly court in one state. Medicare refused to investigate, they also refused to investigate patent dumping by the local religious non profit hospital. This should be a criminal racket, but the first thing the new administration did was protect this industry, by keeping them from being fined. The companies did not pay the fines anyway, but we don’t let facts intrude.
      These companies even intimidate patients with the help of the advocates that were supposed to be protecting them. They operate in a Conspiracy of Silence. As long as there is a buck to be made we can not only ignore the unnecessary suffering but the costs. Covering for these criminals is normalized, and the people who complain are criminalized. Preferred Partners got out ahead of the numerous complaints and a Class Action Lawsuit, by having employees that were supposed working for the state agencies, write glowing misleading editorials in the local press. They were clearly lies, but the newspapers ran them anyway in the opinion section.
      There was also a blackout of fact based news about these criminal providers.

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