“Do Not Resuscitate”:  My Experience with Hospice, Inc.

morphine 3000

    One nurse told Clay. . .  “I’ve given him the highest dosage I can.  It’s enough to kill a horse.  Most hospice patients die from morphine, but I can only OD him within an acceptable margin of error.”

-From Christopher Bollen,  A Beautiful Crime

In this age of coronavirus, it has become abundantly clear that Western culture has little respect or reverence for its elders.  Deaths of the elderly seem of no account and only to be taken in stride.  Such an attitude has increased the opportunities for the hospice/medical industry as it profits off the expendable bodies of older, vulnerable human beings.  For me, that expendability was brought abruptly into focus when my mother, aided and abetted by my siblings, was quickly dispatched by large doses of morphine:  even at 93-years-old, way ahead of her time to die.  My brother and sister-in-law had prominently displayed her “Do Not Resuscitate Form” on the front of her refrigerator for months—and Hospice Inc. efficiently obliged them.

The hospice movement had some thought-provoking beginnings, at least the modern version.  Of course, the good offices of monks and nuns had cared for the dying in medieval times and before.  In the modern version, Dame Cicely Saunders is credited with beginning the movement with her London hospice in 1967.  She was nurse, social worker and doctor, and dedicated her (much-decorated) life to helping the terminally ill.  Saunders brought compassionate (“palliative”) care to patients’ last days, advocating they die in their own time, and “naturally.”  She did, however, introduce the use of morphine to ease pain.  Her philosophy was somewhat different from America’s hospice pioneer, Florence Wald, dean of Yale nursing.  Wald, in 1974, brought “assisted suicide” and “euthanasia” to her Connecticut hospice.  What has evolved in the American hospice industry seems to be a very successful melding of the image of Dame Saunders’ “compassionate” care with the use and apparent abuse of assisted suicide and what author and former hospice nurse Ron Panzer calls “stealth euthanasia.”   

A 2014 Huffington Post study found that once Medicare introduced a hospice benefit in 1983, the hospice industry burgeoned into (by 2014) a $17 billion industry.  In that year, one million died under hospice “care,” and nearly half of all Medicare patients died as home or institutional hospice patients.  The study reported hospice “marketers, doctors, [and] rehab centers” trolling for ill (enough) patients for their purposes.  The now for-profit business is publicly traded and receives little government oversight, regulation, or inspection.  The industry is also rarely punished when lawsuits or investigations claiming wrongdoing are brought.  Many patients and their families never complain—but a 2017 Kaiser News study analyzing 3200 complaints filed against hospice companies over five years, found that with 75% of companies who did receive complaints, none suffered punishment.

There is definitely a host of problems that could bring complaints.  In 2014, a Washington Post report found that hundreds of hospices did not provide promised care; and in 2012, at least one in six had not.  In 2019 the Office of the Inspector General found millions of dollars of hospice Medicare fraud, and a “task force” was formed.  Also on the federal level, US Health and Human Services did a study showing that between 2012 and 2016, 80% of hospices had “deficiencies,” with 20% having “serious” deficiencies.  And in 2018, statnews.com found that in 2006 Medicare had paid out $9.2 billion for one million hospice beneficiaries, and in 2016, that grew to $16.7 billion for 1.4 million beneficiaries.  They cited a Texas nurse in their report who gave “high doses of morphine” whether “a patient needed it or not,” to justify getting “higher hospice payments.”  And they reported the case of a woman with dementia being signed up a year before her scheduled demise.  For that, in a rare outcome, the head of the hospice got six and a half years in federal prison—for her treatment, and for his $20 million scheme to sign up people who were not dying.  Most complaints made to or about hospice are ignored.  That would certainly be my experience:  my complaint was met with denials, lies, and offers of bereavement counselors.

In looking through the hospice patient cases presented on hospicepatients.org, collected by Ron Panzer, it’s clear that there is a definite pattern to how hospice operates in securing and then “treating” their patients.  One case I read involved a woman professional whose 60-year-old boyfriend was basically hijacked by his sister and her husband, apparently so they could have access to his money.  It began by the man needing rehab, and then changed to his health care providers declaring him “terminal” and placing him in hospice.  A health care provider, under today’s protocols, identifies you as terminal if they decide you have six months or fewer to live (a very iffy determination).  He had trusted his sister with his power of attorney after he had experienced a “depressive episode” and was placed back in hospice after having been upgraded to rehab for a time.  His sister placed him in hospice, where, to his girlfriend’s dismay, he was given zyprexa—a stroke inducer.  His girlfriend was kept away from him as his condition worsened, and she was told he had “dementia” (a typical hospice move).  When the girlfriend succeeded in getting him back to rehab, he improved, but his sister was furious.

The sister was able to suddenly move her brother to a hospice house, where the girlfriend was told he had eight days to live.  The hospice nurses stopped his IV, and told the girlfriend he would now receive only  ”comfort [palliative[ care.”  The nurses also had been “warned” by his sister about the girlfriend, and said she “was in denial” (another hospice bullet point).  When she pressed on and was able to get him to eat and drink, his sister was furious, and said the girlfriend got him “agitated”—causing hospice to re-drug him.  The girlfriend’s questions were met by “blank stares.”  He was given meds for pain, although he was not in pain.  The girlfriend told the doctor the man should not be there, and the sister “flew out of the room in rage!”  At that point, they upped the morphine he was being given.  The girlfriend was told without holding his POA (power of attorney), there was nothing she could do.  She tried reasoning with his sister, and soon thereafter got a “vicious letter” from the sister’s husband which said she was “venomonous” and “in denial.”  The sister sent her an email informing her of his death.

The experience of this woman is not at all unique.  Time and time again, hospice agencies exploit vulnerable patients and ignores any protest they might get from concerned family and friends.  My experience with hospice was a nightmare.  It was not an anomaly.  After I discovered that was the case, it was a comfort, (“I’m not crazy!”) but also a horror to find a very widespread pattern and problem.  My mother was a very independent and feisty lady—in very good health for most of her life.  At 91, she fell in her kitchen, breaking a finger and shattering her pelvis.  She was hospitalized and then placed in rehab in a nursing home where she successfully recovered her mobility and went home.  I gradually became aware that my brother and sister-in-law, visibly upset when my mother left the nursing home, had developed a long-range plan not atypical of many children of elderly parents, not for control of her money really, but apparently for the convenience of not having to deal with their elderly mother.  My brother had my mother’s POA and was the sole executor of her will, and thus was able to solidify his control over family decisions.  He and his wife, a 22-year volunteer for hospice, also secured the loyalty of my two sisters, who stopped questioning any of his decisions, particularly about my mother’s health care.

The problem was that I had been her primary caregiver for over a year and a half, there every day, taking care of most of her needs—eye drops, pills, errands, meals usually, and also taking her to doctor appointments, etc.  When I questioned my (younger) brother’s decisions, he began a campaign to separate me from my mother’s care.  This was done by not so subtle assertions to my family, and beyond, that she was not “safe” with me at home, that I was “over my head.” My input into my mother’s care was shut off—my brother and sister-in-law refused to speak to me—and it was easy for them to solve any of my mother’s objections by drugging or ignoring her.  This was especially true once my brother and his wife instituted their new, long-term “palliative” medical regime for my mother.  My hospice veteran sister-in-law told the family that “palliative care” would “mean no change in her care,“ and “assure Mom’s remaining days are comfortable.”   When it was apparent she was developing difficulty bathing and cooking for herself, and had to take two trips to the hospital to treat anemia resulting from the blood disorder myelodysplasia, I began to think of ways to get help to improve her home care.  But I was pre-empted.  My sister-in-law had already arranged a hospital-style bed for my mother, something my mother (who was fully coherent and lucid right up until her death—unless heavily drugged) repeatedly and emphatically said she did not want.  The day it was delivered she was heavily dosed with lorazepam and morphine in case she got “agitated.”

The new regime for my mother included hiring numerous home health aides, done without my prior knowledge much less consent.  Her doctor, who had spent little time examining my mother, signed onto the new plan.  I questioned the need for what they called her new palliative care regime, which had my mother receiving no showers or baths, sitting in unclean clothes, having an unhealthy diet, being drugged into very long periods of sleep, and receiving no treatment for her urinary infections. All the aides were required to sign a letter promising to speak only to my brother and his wife and not to me, about any aspect of her care.  One of the health aides, a woman with 26 years’ experience, told me my mother’s health was not bad enough to require palliative (hospice) care.  She also warned me that if hospice came in, she’d be dead within a week.  My mother was almost always alert, and her diagnosis of myelodysplasia was not necessarily dire.  My observation was that she was still as active as she could be, cheerful and not in much pain.  When that experienced aide who objected to her palliative care would not sign my brother’s letter, he fired her.

According to hospice care reformer and author Ron Panzer, for patients under hospice care, the line between so-called palliative care—“pain relief, symptoms management”—and “imposed death” has blurred as hospice and palliative care groups became “heavily funded.”  Palliative care is supposedly a “niche” in medicine for treatment of pain.  But, as with my mother, when every patient is sedated because they’re defined as “agitated,” that’s not what palliative care is supposed to be.  Panzer asks, “Is it ‘palliative’ to refuse to treat treatable medical problems?”  And then just “anaesthetize and kill—?”  In some cases, families are led to expect palliative care, but get no treatment at all.  A woman in New York City who recounted her experience in a 2018 New York Times article, said their family was promised 24/7 oversight by a doctor and 24-hour service by a nurse by hospice, for their father, but were not told it depended on “staffing levels” whether or not her father got “palliative care.”  He slipped into a coma before they could say goodbye.

There are apparently thousands of cases across the country of patients being cheated of competent and humane treatment.  A father of two daughters died under hospice care because his regular lung medication was refused him against his stated wishes.  He was given no food or water—just morphine—killing him in a few days. Another man had heart problems, but not life-threatening.  After being taken to a hospice facility, he gradually diminished, and died in a few days, after being given morphine every 15 minutes. [!]  And in the account referred to earlier, a 60-year-old man in rehab became deathly ill in a hospice institution after being given dangerous amounts of morphine instead of treating his actual medical condition.

It is an all too common experience for families of hospice-bound patients to be misled and given misinformation at all points of the process.  It is also common to be treated with coercion, hostility and intimidation.  For my mother’s admissions/information visit by Hospice Inc., my sister-in-law announced that a “palliative care nurse” would be coming to my mother’s house (September 19, 2019) to “check over” my mother, answer our questions about hospice and discuss whether or not my mother should become a hospice patient.  The hospice nurse began by explaining the Hospice Inc. program, with heavy emphasis—and a handout—on the drugs they administer via visiting nurses:  Tylenol, prochoropenzine (for vomiting and psychosis), lorazepam (for anxiety), and most especially, morphine.  I learned that day that my mother had already been taking morphine for some time, presumably part of her “palliative” care.  My questions about how things worked, who made the decision to have Hospice Inc. come in, and so on, were answered politely by the admissions nurse, at first, with her stressing that they would work “hand-in-hand” with her doctor to have treatment “pain-free and with dignity.”  But she also said there would be no (more) palliative care.  My mother was “with Hospice, when no treatment is done.”

My sister-in-law punctuated my questions with sighs and groans and throwing up her hands, along with comments like, “Oh, she’s just a distraction.” My mother was there at this meeting, heavily drugged with lorazepam (and maybe morphine), and half-dozing, but awake.  She and I exchanged grimaces a few times, because she had made it clear to me on a number of occasions—when she was fully cognizant and coherent—that she didn’t think hospice coming in was necessary.  When I asked who made the decision for her to become a Hospice Inc. patient, the nurse said “the patient—the family—her health proxy.”  My older sister held the health proxy, but my brother said he was her advocate.  And when I asked what if some of the family disagrees?  At that point, the nurse turned her back on me, and related only to the people who were busy yelling at me that I knew nothing and “lived in my own world.”

The nurse suggested a “family meeting” to work the whole thing out. My sister seemed dazed and kept saying she just wanted information.  I told my brother and his wife that I was opposed to Hospice Inc. coming in at that time.  When I told the two of them they do not control everything, my brother said, “Yes, I do,” and moved as if to strike me, putting a fist up to my face.  His wife told him “no.” But then she stood up, went behind my chair, and using both hands, shoved me forcibly into it.  Beyond disgusted, I told my mother goodbye and left.  I encountered the nurse outside, and told her the situation “was not over.”  She said nothing.  She did not tell me that the Hospice Inc. admittance papers were already prepared, and that within minutes after I left, my confused sister, my mother’s health proxy, had signed them all.  The “admissions” procedure, characterized by lies, misrepresentation and coercion, was accomplished.

Hospice agencies have become notorious for misrepresenting what’s to come, to patients, and to family.  As noted earlier, in the case of the woman with a boyfriend in rehab, she was totally misled about what would happen with hospice, and more importantly, she was totally helpless to remove him when she saw what was happening.  In another case, a daughter thought her father’s heart problems were treatable, but he “diminished” when placed in a hospice facility, a place one doctor had warned her had a “license to kill.”  After morphine doses, he died after a few days there.  The 2018 Times article cited earlier, writing of “not the good death we were promised,” makes clear that the woman’s father did not receive anywhere near the care hospice promised with a resulting nightmare for her as he went into a coma.  And in 2014, the Huffington Post reported on what happened to Evelyn Maples, whose family was horrified to watch her “overmedicated.”  She had not given her consent, although capable of doing so—her family was misled about her treatment, and they were unable to get her out of hospice “care.”

After I found out my mother was officially a patient of Hospice, Inc., I checked the medical notations done by the aides, and found my mother was being given .25 ml of morphine three times a day, by Friday the 21st.  Shortly after that, Nurse “Naomi” was administering .5 ml every two hours, with doses of prochloropenzine.  (My brother’s home health aides also gave her morphine.)  My mother’s condition very quickly deteriorated from being alert and seeming fine, when she was allowed to be awake, to just weeks later, being a vegetable lying with her mouth open—, and given no food, bathing, and little water.  Just the morphine.  I was alarmed at her rapid downhill slide.  She and I had had no time to talk, to say goodbye. On Monday the 24th, I finally convinced my older sister that we should call Hospice Inc. and see if they would ease up on the morphine.  (My younger sister refused to believe me when I appealed to her.) We spoke to a nurse on phone duty there, and she was incredibly rude.  When I said I’d like to call my mother’s doctor (her original one, back from leave) about it—she became very angry.  “They’d tell you the same!”  When I went to see my mother after that call, I said, out loud:  “It’s way too late.”  She looked barely alive.  She died two days later.

It was too late to save her from the “morphine cocktail.”  As in the opening quote, as part of popular culture, it is known that morphine is hospice’s weapon of choice.  “Most hospice patients die from morphine, but I can only OD him within an acceptable margin of error.”  An RN told the hospice patients organization that when her mother was given over to hospice, both her own and her mother’s wishes were ignored.  The RN told the hospice nurses they should not give her mother morphine, but she was ignored.  Her mother quickly began to show signs of “poisoning” as a result of the morphine.  The hospice nurses told her—as Hospice Inc. told me, using almost the exact same language—that her mother “didn’t want to eat,” “would be sleeping more,” and would begin to “have trouble breathing.”  When the RN objected to the morphine, the nurse turned her back on her and yelled at her, and then security took her away. [!]  The RN said hospice gave her mother “a death cocktail,” and echoing my sentiments, said she “looked like a euthanized animal” when she died.  Evelyn Maples, mentioned above, was over-medicated, including with morphine, even though she was “full code resuscitate.”  They ignored that since hospice patients are assumed to have a DNR form.

Case after case reveals the same deadly prescription:  a father died when his lung medicine was replaced by morphine; as noted, another father died in a few days after being given morphine every 15 minutes!   A woman with COPD (chronic obstructive pulmonary disease) had a cut left untreated, medicine denied and died, according to her autopsy, of “morphine intoxication.”  The study on statnews.com cited earlier found a North Texas nurse giving “high doses of morphine” whether “a patient needed it or not” to get higher payments from Medicare.  And Huffington Post reported a former hospice doctor in Atlanta saying hospice nurses gave morphine against a patient’s will and doctor’s orders.  The world of hospice continues unabated in the coronavirus pandemic.  In a pbs news report, a hospice institutional manager laments that hospice patients were tending to not go to a hospice facility, but to just stay at home.  Those patients could go to a hospice facility and “be comfortable with morphine and attentive nurses and sparing community exposure.”  Attentive nurses who will gladly give a death cocktail.

When I sent Hospice & Palliative Care, Inc. my formal complaint in January of this year, the CEO gave me her “deepest condolences” in her reply, and assured me she did a “full investigation.” Of course that investigation did not include speaking to me, or to the veteran home health aide who voiced grave reservations about their treatment.  She also, unsurprisingly, put all the responsibility on my mother’s physician and refused to reveal any medical records.  She also said my brother had my mother’s health care proxy; something easily disproven by the fact it was my older sister who signed the admission forms.  He did not have it, but since according to her he did, she said she therefore considered him the one who was supposedly the “point person” in charge of giving me information.  Unfortunately, he had not been really speaking to me in some time.  All the wonderful written information that she told me Hospice provides, I never saw.  She also lied about their 24/7 availability for families, although they were available to be hostile to questions.  She was sorry if I “felt the Admissions Nurse did not include me”; she denied that was her intent.  Oh?  Turning her back on me?  Not speaking to me? Lying to me?  And the CEO (so appropriate, a CEO!) insisted “the patient,” my mother, “received a gradual dose change of ‘pain management medication’ based on her physician’s recommendation.”  This was a lie—I saw the aides’ notes on the rapid increase of morphine and could also see the results.  My response to her response addressed the above, and was, of course, never answered.

She obviously thought I could be fobbed off with her assurance she would use “my concerns” “in staff training . . so no one will feel left out.”  And the kicker:  “I hope you will consider using our bereavement services that are available to family members of all Hospice patients.”  Yes, that would do it.  “Bereavement” doesn’t begin to touch my feelings towards Hospice Inc. and their part in killing my mother with morphine, with my siblings’ compliance.  I knew that my protest would not result in any satisfactory action, but as I said in that complaint, I wanted them to know “that not everyone will simply accept the sort of cruel, callous and incompetent treatment” that my mother received.  And of course, it’s evidence for this article.

Hospice Inc. deals in lies, coercion, manipulation and greed.  And they get away with it.  As noted, Kaiser News reported in 2017 that a five-year study found 3200 complaints filed against various hospice organizations which were rarely punished.  Police, prosecutors, county and state health officials, the DEA—complain all you want, they refuse to go there.  And a wrongful death suit is very difficult to win:  you have to show how you suffered a loss of income (!), among other requirements.  There are privacy laws.  The media is very hospice-positive:  “They do much more good than bad.”  Most victimized family members just stay silent, and if they do speak up, they get nowhere.  In California, in 2019, Steve Lopez’ mother Grace died after neither her medications nor her hospice nurse showed up from the hospice agency.  The California Public Health Department “could not validate his complaints,” nor did they get around to, as promised, investigating further.  A Kentucky man who complained about his wife’s death being caused by “suspicious use of a drug [morphine] pump” was told by hospice lawyers that his “trauma had colored his perception.”  In case after case investigated by Ron Panzer, complaining family members are told they are “not able to deal with death.”  This is what Hospice Inc. told me in suggesting their bereavement counselors.  My younger sister has repeatedly said to me that I obviously have a hard time dealing with death.  Yes I do.  Especially when, for my mother it was unnecessary, premature and made possible by her own children.

The elderly are not revered in Western society.  Oxford economist Jeremy Warner finds the virus beneficial for “culling elderly dependents.”  Scotland’s George Galloway writes scathingly of British treatment of old people which, in the midst of the pandemic is encouraging an increase in “Do Not Resuscitate” orders.  “Euthanasia by stealth and contrary to law, has washed up on our shores.” And our own local Hospice Inc. is eagerly seeking new patients.  The CEO says her staff “performs like true angels,” providing bedside care, social work and “spiritual care” (bereavement).  She says Hospice Inc. reduces the strain on the healthcare system.  She then tells us it is important people know Hospice is there:  “We’re still taking care of people at home so they don’t have to go to the hospital to die.”  They can die by morphine overdose in the comfort of their own home.  They do not resuscitate.

Linda Ford is a women’s historian and antiquarian bookseller in central NY.  Her most recent book is Women Politicals:  Jailed Dissidents from Mother Jones to Lynne Stewart.




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