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Related: Editorials & Other Articles, Issue Forums, Alliance Forums, Region ForumsNo One is Coming: Investigation Reveals Hospices Abandon Patients at Death's Door
No One is Coming: Investigation Reveals Hospices Abandon Patients at Deaths Door
As her husband lay moaning in pain from the cancer riddling his body, Patricia Martin searched frantically through his medical bag, looking for a syringe. She had already called the hospice twice, demanding liquid methadone to ease the agony of Dr. Robert E. Martin, 66. A family practice physician known to everyone as Dr. Bob, he had served the small, remote community in Wasilla (home of caribou barbie), Alaska, for more than 30 years. But the doctor in charge at Mat-Su Regional Home Health and Hospice wasnt responding. Staff said he was on vacation, then that he was asleep. Martin had waited four days to get pain pills delivered, but her husband could no longer swallow them. Now, they said, she should just crush the drugs herself, mix them with water and squirt the mixture into his mouth. Thats why she needed the syringe.
I thought if I had hospice, I would get the support I needed. They basically said they would provide 24/7 support, she said, still shaking her head in disbelief, three years later. It was a nightmare. Patricia had enrolled her husband in hospice when the metastatic prostate cancer reached his brain, expecting the same kind of compassionate, timely attention he had given his own patients. But Bob Martin had the misfortune to require care during a long holiday weekend, when hospices are often too short-staffed to fulfill written commitments to families. The consequences, as documented through a review of official records and interviews, were dire.
. . . . .
Yet as the industry has grown, the hospice care people expect and sign up for sometimes disappears when they need it most. Families across the country, from Appalachia to Alaska, have called for help in times of crisis and been met with delays, no-shows and unanswered calls, a Kaiser Health News investigation published in cooperation with TIME shows. The investigation analyzed 20,000 government inspection records, revealing that missed visits and neglect are common for patients dying at home. Families or caregivers have filed over 3,200 complaints with state officials in the past five years. Those complaints led government inspectors to find problems in 759 hospices, with more than half cited for missing visits or other services they had promised to provide at the end of life.
. . . . "
Only in rare cases were hospices punished for providing poor care, the investigation showed.
Hospice is available through Medicare to critically ill patients expected to die within six months who agree to forego curative treatment. The care is focused on comfort instead of aggressive medical interventions that can lead to unpleasant, drawn-out hospital deaths. The mission of hospice is to offer peaceful, holistic care and to leave patients and their loved ones in control at the end of life. Agencies receive nearly $16 billion a year in federal Medicare dollars to send nurses, social workers and aides to care for patients wherever they live. While the vast majority of hospice is covered by Medicare, some is paid for by private insurance, Medicaid and the U.S. Department of Veterans Affairs.To get paid a daily fee by Medicare, hospice agencies face many requirements. They must lay out a plan of care for each patient, ensuring they'll treat all symptoms of the person's terminal illness. And they're required to be on call 24/7 to keep patients comfortable, but because each patient is different, there's no mandate spelling out how often staff must show up at the home, except for a bimonthly supervisory visit. Hospices must stipulate in each patient's care plan what services will be provided, when, and by whom, and update that plan every 15 days. Hospices are licensed by state health agencies, and subject to oversight by federal Medicare officials and private accreditation groups.
. . . . .
http://time.com/4995043/no-one-is-coming-investigation-reveals-hospices-abandon-patients-at-deaths-door/
and here are hospices being fined for bilking medicare:
https://www.democraticunderground.com/10029776009
Kaleva
(36,240 posts)When it finally was resolved that my SIL was no longer in the care of hospice, the hospital provided her with morphine and she died there the next day.
niyad
(113,027 posts)despicable.
Kaleva
(36,240 posts)My SIL wanted to go the hospital but hospice was at fault for not clarifying the situation with the hospital who assumed hospice was still the primary caregiver and thus didn't give her any morphine until my wife raised hrll.
titaniumsalute
(4,742 posts)Very very nice staff, comfortable situations for the patients and family, very attentive to our needs, etc. And this was at 3 separate locations. Let's not generalize here.
niyad
(113,027 posts)on hospice companies committing fraud?
when hospice first started, my mother was in their care--and they were incredible, of course, back then, they were not part of vast medical conglomerates either.
titaniumsalute
(4,742 posts)No One is Coming: Investigation Reveals Hospices Abandon Patients at Deaths Door
This headline declares that hospices abandon patients. That insinuates all hospices. And that certainly ins't true. A better headline would be "No One Is Coming: Investigation Reveals that Some Hospices Abandon Patients at Death's Door.
I've worked in and around journalism for most of my career. Headline writing needs to be careful or they can simply generalize and nearly become tabloid when certain words are used incorrectly.
We also now live in a social media guilty until proven innocent society. I think the media needs to work harder in making sure we have accurate headlines and stories. I'm not saying the content of the story isn't true, but the way it is written.
Maraya1969
(22,459 posts)realize that Hospice will make home calls
titaniumsalute
(4,742 posts)That is another reason it is misleading.
csziggy
(34,131 posts)Some only work in hospitals, some only work in their own facilities.
When my brother in law was dying he got hospice care at home over the last weeks of his life. Same for my uncle who received care for significantly longer. Both were very good organizations and provided wonderful services.
When my Dad was dying, we had a choice between a hospice organization that had its own facility or one that worked with the hospital in their palliative care unit where he already was. We did not explore taking him home - he had no awareness of his surroundings. The hospice group that cared for him at the end was wonderful - plus we knew that if anything went wrong the hospital would take back the care with the same intention of easing his passing.
Most hospice groups are great - the figures in the OP indicate that only a few thousand complaints have been filed for poor care which is a very low complaint level.
oegthe
(40 posts)No. The headline implies "some," not "all."
titaniumsalute
(4,742 posts)Let's try this...bad headline would be...
"No One Is Safe: Investigation finds Pitbulls are Really Viscious Animals"
Better headline:
"Investigation finds That Some Pitbulls Can Be Really Viscious Animals"
See the difference?
mia
(8,358 posts)When my father went under the care of Hospice at his assisted living facility, we learned that the nursing assistants that were usually assigned to him we're not supposed to attend to him anymore. Thankfully, they helped him anyway, even though they could have gotten into trouble.
moriah
(8,311 posts)He entered inpatient hospice upon diagnosis of his metastasized liver cancer because he was already in end-stage HIV, and had wasted to a 15 BMI, when he collapsed from high calcium and they'd discovered the tumors. He was homeless and had no family support except me, and moving him to another state for the end would have been harder because of getting his Medicaid transferred, etc.
So his month in hospice, unlike most, was in their inpatient facility, usually where they took people only when care at home became impossible. Usually in situations like the one described in the article -- pt is actively dying and needs more care/pain control than can be done at home (though if all that would have allowed him to die at home comfortably was Oramorph, that's bloody insane it couldn't happen -- a friend's father was sent home with Oramorph from the hospital with the knowledge it was the end without officially entering hospice, it's not like it's a drug that only hospice can prescribe.)
The hospice we dealt with was very, very good to him and to me. I am grateful, and made sure to mention them as the charity of choice in his obituary. Not all hospice systems have inpatient facilities I guess, though, and it sounds like they really need to, if "hospices" are dropping patients off at regular hospital ERs to die and delaying pain treatment.
KT2000
(20,567 posts)who started hospice in our community decades ago. Their services are free, relying on donations and mostly volunteer staff. The for-profit moved in but are not having the success that this woman has. The fight she had to take on against the for-profit that wanted to stop her further galvanized the community to support her. Forty years of loving care speaks for itself.
https://www.seattletimes.com/seattle-news/health/amid-a-for-profit-surge-a-port-angeles-hospice-has-offered-free-care-for-40-years/
niyad
(113,027 posts)chia
(2,244 posts)We were frantic because he was seizing and we didn't know what to do - and we felt completely stonewalled. It certainly seemed to us they were intentionally slow to respond. I can't help but wonder if it's because when the patient gets to crisis stage, family members want to call 911 - which isn't an option for hospice.
We'll never know for sure. What I do know is we went through hell, and I've been ambivalent about hospice ever since.
TheFrenchRazor
(2,116 posts)cancer can't get adequate, easily available pain relief, this country's values are highly f-ed up.
onethatcares
(16,161 posts)the end should be worked out with a physician or hospice administrator, and the family.
We don't even get the decency we give to our pets.
ZERTErYNOthe
(195 posts)First time poster alert ... be gentle with me.
I agree that we should not generalize by one case. I have perhaps a different perspective, having watched a few loved ones go through this several years ago, and now have more loved ones going through this.
I think a lot of it has to do with resources available to the family. I spent a lot of time with my Mother as she spent 3 years dying from cancer (which usually had about a year of life expectancy). Fortunately my Father was employed in a profession that gave him retiree health care, and he had also been paying for long term health care insurance. She had awesome health care, home health care workers, and in the end, just the most fantastic hospice people who visited with her in her home up until her death.
At the same time I had two beloved family member taken down by Parkinson's and related problems. One had no money, but strong family support, the other had strong family support, and a considerable amount of money. While both, I hope, had a decent end of life, having money made a big difference.
And while this was going on, my brother in laws father had serious health issues, and ended up spending his last two years in one of the few nursing homes that would accept a destitute person (guvmint funds). While he never had much money, he worked hard all of his life, and he wasn't destitute until he ended up needing to be in a nursing home - then his few assets had to be sold to pay the bills. It was awful an awful place. I hope I never end up in someplace like that.
Illness and end of life is inevitable for all of us, and I believe all should have the same dignity and treatment regardless of their station in life. Let's take a look at what leads to this inequitable treatment, rather than discussing if hospice workers are good or not (yes, they are - good, or not).
NCTraveler
(30,481 posts)niyad
(113,027 posts)NCTraveler
(30,481 posts)One recently. I couldnt imagine going through either situation without them.
So sorry to those who have had a problem with them. Talk about a wrong time in someones life to have an additional serious problem throw in. Truly sorry to those commenting who didnt have the same experience with hospice that I did.
Response to niyad (Original post)
cmos_sue This message was self-deleted by its author.
NRaleighLiberal
(60,006 posts)Generalizing about an entire service is problematic, because as we know, things vary widely - place to place, and person to person.
Hospice was there for my father, my wife's father, and my wife's mother's ends of life. In each case, we considered them to be angels, stepping in and providing comfort at extremely difficult times.
I do think that there is inevitable variation state to state - our experiences were in Rhode Island and Massachusetts (blue states) - from what we've heard, things don't go quite the same in redder states where the religion flavor of the day predominates decisions and philosophies.
Codeine
(25,586 posts)before something like this becomes an issue for my loved ones.
csziggy
(34,131 posts)Now known as Compassion & Choices: http://www.finalexitnetwork.org/index.html
Frankly, I think I might join them.
niyad
(113,027 posts)I have seen.
csziggy
(34,131 posts)Once she was no longer mentally able to deal, we all wished there was a way to end her suffering quickly.
Personally I would not want to be where my Mom is - she still has a few days but for a woman who used to be always on the go, always learning and doing, having her mind slip to the point she cannot initiate a trip the to bathroom without assistance is horrible to watch. On her good days she is frustrated by her lack of ability.
Mom's lucky - my older sister lives close and can supervise her care. I will not have anyone to do that for me if my husband goes before I do. And if he does, I don't want to put him through it, either the experience or the hard choices.
I need to join.
AwakeAtLast
(14,120 posts)Suffering from cancer, took a turn for the worse unexpectedly. Hospice would say they were on their way, and then not show up. This happened over three days.
Come to find out, she had had a stoke and should have gone back to the hospital. If they had shown up, she would not have suffered as much. She died two days later.
blueinredohio
(6,797 posts)so they didn't get cheated out of that much money but it's terrible you get charged every day and never see anyone