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Investigation reveals pattern of neglect by hospice caretakers

In-home hospice care promises 24/7 support for dying patient’s needs, but a new investigation combed through thousands of hospice inspection records and found that calls for help in times of crisis were met with delays, no-shows or were never answered. John Yang is joined by JoNel Allecia of Kaiser Health News to discuss the neglect for patients and the lack of oversight.

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  • Judy Woodruff:

    Now: There are 4,000 hospice agencies around the country. And a new report has some disturbing findings showing neglect for too many patients and their families.

    John Yang has the story.

  • John Yang:

    In-home hospice care promises 24/7 support for a dying patient’s physical, emotional and spiritual needs, allowing them to spend their final days at home.

    But a new investigation has found that calls for help in times of crisis have sometimes been met by delays, no-shows and unanswered calls.

    Here to talk about this is one of the reporters who conducted the investigation, JoNel Aleccia, a reporter for Kaiser Health News, which is an independent service not associated with Kaiser Permanente.

    JoNel, thanks so much for joining us.

    You worked on this with your colleague Melissa Bailey. Tell us what you found, sort of the magnitude of what you found.

  • Jonel Aleccia:

    Yes, we did.

    You know, we took a look at about 20,000 hospice inspection record from Medicare, and those included about 3,200 complaints. And of those, more than 700 were confirmed and found to have problems.

    We looked at those, and more than half of the inspection reports and the complaints with problems were from people who had missed visits,

    no-shows and other kinds of services that they were promised that were missed.

  • John Yang:

    And an example of this, we have got — you folks at Kaiser Health News produced a video part of this report.

    This is Patricia Martin of Wasilla, Alaska, talking about her struggle to get pain medication for her husband as he died of cancer.

  • Patricia Martin:

    So, I called them. And I said, we didn’t get the pain medication. And they said, oh, well, we can’t get ahold of the doctor, because he is sleeping because he works at night at the hospital on Saturday.

    He said to me, “I thought I was going to get pain relief” when we got into hospice.

  • John Yang:

    The Alaska Department of Health and Social Services concluded in that case that the hospice failed to properly coordinate services for the Martins.

    How typical was that — is this example?

  • Jonel Aleccia:

    You know, Pat Martin’s situation was, sadly, really typical of the situations that we found in those complaint records.

    We combed through them and were able to track down people through death records and other public records. But Pat’s case was, sadly, very common. We had other people where they delivered boxes of medication without telling them how to use it. They had nurses that they would call in the middle of the night.

    One nurse that we reported about, her cell phone was on silent, and she missed 16 calls for help as this woman’s husband was dying.

  • John Yang: 

    What was the industry response to what you found?

  • Jonel Aleccia:

    You know, what the industry said is, no situation like that is tolerable or appropriate.

    But they emphasize that most people who enroll in hospice are happy with the experience. And they said that these cases are a small minority of the typical cases that you will find in hospice.

  • John Yang:

    In your report, you pointed out that a lot of this was paid for by Medicare and that hospice gets — the hospice services are paid for by about $16 billion a year in Medicare funds. These are taxpayer funds.

    What sort of oversight does Medicare have over these services?

  • Jonel Aleccia:

    Well, Medicare — you know, Medicare is responsible for oversight of the hospices. But, you know, what is not often known is that these hospices aren’t inspected as frequently as nursing homes are, for instance. They don’t have to be inspected every year.

    You know, they just changed the rules, and starting in 2018, they will have to be inspected every three years. So, Medicare is responsible for oversight of these hospices, but it doesn’t appear to be enough.

  • John Yang:

    In — we have got less than a minute to go. What can families do to try to avoid these problems?

  • Jonel Aleccia: 

    Families can ask questions about how people respond to patients in emergencies.

    If they have time, they can ask their local state — the state health department for the inspection records at the hospice that they plan to use. But, mostly, they need to ask questions about what happens late in the night and when patients are at their worst.

  • John Yang:

    JoNel Aleccia Kaiser Health News, thank you so much for telling us about this really startling report.

  • Jonel Aleccia:

    Thanks for having me.

  • John Yang:

    And you can

    read the full Kaiser Health News report

    on our Web site, PBS.org/NewsHour.

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