My Sweet Momma's Story
(Marsha Joiner tells how her mother, Frances, was hastened to death in a hospice facility)
I am grateful to find an avenue to tell my sweet Momma's story and hopefully help others keep this from happening to their loved ones.
First my Momma, Frances, was a beautiful lady who had a smile for everyone and a listening ear and she encouraged people when they talked to her. She loved her family of 3 children, 4 grandchildren and 9 great grandchildren, and was loved by all her family and friends because she was so personable and compassionate of others. Momma Frances with Durwood and Martha In the last few years, she was homebound due to severe arthritis in her hip. We knew she had medical issues but she did not die of natural causes.
My Dad, Durwood Souther, cared for her at their home in Georgia since my sister lives in Florida and I live in Virginia. In the fall of 2016, she went to the hospital because the doctor did a blood work up on her due to being weak and determined she was anemic. She was sent to the hospital for a colonoscopy and endoscopy looking for the possibility of cancer. Both tests were negative.
The physicians determined that she was severely anemic but could not find the cause. She had previously been diagnosed with Congestive Heart Failure ("CHF") and was on medication for this. We knew that one day we would lose her, but she always stated that she wanted to die at home. People can live 5-10 years or more after being diagnosed with CHF.
Her Primary Care doctor, who is also a Hospice doctor, came to the hospital and stated that we could contact hospice for assistance with her care because she fit the criteria. My Daddy had been the hospice Chaplain for 15 years at that location, and we felt Momma would be safe under their care and that they would offer him assistance in her care. That was a decision we lived to regret.
We were assured and promised that they wouldn't hasten her death.
They said,
"Oh, no! We wouldn't do that!"
They lied! At first, the care provided was satisfactory except the nurse kept trying to increase her pain meds. That was the first red flag that we didn't recognize. While being pulled up from her chair by one of their staff in December, she fell and her coccyx was damaged. After 3 weeks of pain and prodding by the nurse, she finally agreed to an increase in pain medications.
The day she fell the hospice nurse called me and suggested that she use a hospital bed at the house. I spoke to my parents, and we all agreed that putting Mom in a bed would not be a good decision for her as she slept in a power lift recliner that helped her to sit up fully when she wished to get up. Being in a bed would have been very hard on her hip.
My parents talked to the nurse and declined the offer. The hospice staff seemed to have an agenda even then and appeared irritated that we wouldn't put her in a hospital bed. When I received the medical documents in August, they stated that the daughters didn't call them back about the hospital bed! There was no reason for me to call since my parents had told them already and that was their right. It appeared to me like they didn't think my parents could or should be making decisions for themselves. They acted like they were dealing with people who were incompetent, but they were very capable of making their own decisions!
At that time, they increased her Fentanyl patch from 25 to 50 mcg. We are not certain when she started Fentanyl patches as there are conflicts in the documentation. She had previously been using Lidoderm patches for pain relief without any adverse effect. We wrongly assumed that Fentanyl was like this patch. She also took Hydrocodone-Acetamin every 4 hours or as needed for arthritis in her hip. Because she was afraid of narcotics, she kept a schedule on her calendar when she took them and would hold out as long as possible between doses. She always told them and us that a pain level of 8 - on a scale of 1 to 10 - was acceptable to her because she didn't want any stronger medications. That was her wish!
After the physician doubled the Fentanyl dose from 25 to 50 mcg, she didn't answer the phone as often as she had. My Dad would answer and reported that she was sleeping more. We didn't understand that like all opioids can do, the Fentanyl was causing to her to sleep because we were ignorant and didn't realize it was an opioid.
After her death, we received her medical records. These indicate that in early spring 2017 she had expressed dissatisfaction with the hospice management, because they kept changing the nursing staff sent out to assist. Later on, my Dad told me that many who came were not physically able to help her due to their own lack of fitness to serve so he helped her while they sat! He did not complain to the hospice.
After my mother's primary care doctor re-certified her for hospice from May 15th through July 13th, he left for India for 3 weeks. The hospice staff knew he was gone since he also was one of their doctors.
Momma called hospice on May 31, 2017 and told them not to send a person that day since it was yet another person she hadn't met. The hospice had been sending staff to help on Mondays and Wednesdays since November, and we had a paid provider who came on Tuesdays and Thursdays but could not help on other days of the week. The hospice management was aware of this, but on June 2, 2017, the head nurse told Momma that they could no longer send staff on Mondays and Wednesdays but would see if they could find a volunteer on those days.
On June 7, 2017, Momma called for assistance to help clean her up since she had a bout of constipation they were "treating" and stated that her husband was feeling weak.
On June 8th, the nurse called Momma and indicated that Momma is feeling better and eating and drinking
Not knowing the cause of his weakness, on June 9, 2017 the hospice staff showed up at my parent's home and told them:
"The ambulance is already on the way."
"We are going to take both of you to our hospice wing at the hospital."
"Durwood can get some rest and receive respite care."
"It will just be for a few days."
They also said,
"We'll take care of you (Frances)."
My parents were not given the chance to consider this decision and accept it or not, and it was done so quickly that my sister and I were not able to object.
While he was not their "patient", if they had suggested he go see a doctor because he was weak, Momma would have stayed at home and we would have come to the house to provide care, but they took it into their hands and took the opportunity to get her out of the house and under their 24 hour care
Mom had been very clear that she wanted to die at home when the time came and would only have agreed to go to the hospice so that my Dad could rest. They knew that using her husband's need for rest would convince her to go. According to their own records and my Dad's opinion at the time, her condition had not deteriorated in a way that would justify sending her to the facility. Mom and Dad were sent to separate rooms at the hospice wing of this hospital
My sister was called to come from Florida, and I came from Virginia and wanted to find other home healthcare agencies to care for my Mom. I immediately made contact with agencies in Georgia for additional assistance and planned on taking her off hospice.
Her paid care provider, April, visited her on Sunday June 11th and shared pictures with me showing that she was alert and sitting up in bed looking at photos on a cell phone. April stated Momma was fine, very talkative, and eating. Sometimes, she wanted to get out of bed, but they didn't have a power recliner - like she had at home - that she could use to help her up.
Mom told April that the nurses had started giving her morphine and told her that her pain medication, hydrocodone was causing her to be constipated. Changing her medication to morphine for this reason was unjustified, because they were giving her laxatives, and morphine, like all opioids, can also cause constipation! Again, they lied!
Notes in the medical records indicate she refused pain meds several times until she was no longer conscious enough to object to anything they did.
My Mom told April she loved her when she left and said, "Come at your regular time on Thursday because we will be home."
The medical records indicate that she cried and was sad and told the nurse she was afraid of taking morphine and that she remained sad until she was so far in a coma that she just cried, moaned, and was not able to speak at all.
Even though she stated she was not in pain and showed no signs of discomfort, the medical records show that on Monday, June 12, 2017, the doctor changed her Fentanyl order from 50 mcg to 100 mcg and changed her hospice status from respite care to end of life care. It should be noted, she was supposed to be released the following day.
Two hours after the 100 mcg Fentanyl patch was placed, she reacted very adversely. The medical records state:
"Guarded movements, wincing on movement, Body Language Rigid, fists clenched, knees pulled up. Pulling or pushing away, striking out." She exhibited "Occasional labored breathing, facial grimacing, occasional moan or groan, low level speech with negative or disapproving quality."
We didn't know about this until later when we read the medical records. At this time, the hospice staff gave her Roxanol (morphine) and Ativan and did this each time they assumed she was in pain. The medical records state that she remained worried and tearful and that they could hear loud moans from her room at the nurses' station. She continued to cry and could not be reassured or consoled. This all happened the day after they increased to the Fentanyl 100 mcg patch and before my sister arrived. By the time we were there, she was lethargic and not aware of her surroundings!
I ask, "Is this what hospice considers helping a patient?"
Once my sister and I found out about the morphine and Ativan, we told them to stop and that we hadn't checked her in for them to "check her out" of this life and that she was there at the hospice wing for my Dad to receive respite care. The nurse stated she was aware that they were there for my Dad to receive respite care. They stopped the morphine and Ativan but did not remove the fentanyl patch.
At the time, we did not know fentanyl's properties or understand that it was different from the Lidoderm patch she had been using. We had no idea it was 100 times more potent than morphine and 50 times more potent than Heroin! Their records state over and over that we said it was OK to keep the Fentanyl 100 mcg patch on. These statements are absolutely false! We wanted her to be alert so we could take her home! They knew this, but they counted on family members' ignorance and they certainly didn't intend to educate us about the effects of taking an overdose of an opioid like fentanyl.
We spoke to them about moving her to the hospital to get assistance in determining why she was comatose and they said, "She will have to be checked out of this side of the hospital facility, put into an ambulance, moved to the other side, and then admitted to the hospital."
They said,
"That will be too hard on her!"
"If the hospital staff pump her with fluids to hydrate her, she will drown from the fluids around her heart," and,
"That is a horrible way to go. You don't want that for your mother - do you?"
Of course we didn't want that! So, we were talked out of it. We stayed with her around the clock
The nurse from the hospice office recorded that we had taken our Mother off all pain meds for 24 hours and that she was still lethargic - indicating that the morphine wasn't an issue. Clearly this was a lie since she was still on Fentanyl which certainly also is an opioid pain medication that can easily place a patient in a coma. Amazingly, again they lied to us!
The nurses stated in their records that my sister and I said that we didn't care if our mother was in pain and "If she hurts, so be it." That is not what we said. It has been extremely painful to read our mother's hospice medical records. These indicated that we didn't care about her being in pain, but they then contradicted themselves when they noted, "This is a lady that is very much loved by her family."
The nurses kept trying to "educate" my sister and me about pain symptoms when Momma would furrow her brows, moan, wince, or cry out, and insisted that we should let them give her pain meds. We eventually gave in to the pressure they exerted, because we believed their deceptive statements and succumbed to their manipulations when we saw these symptoms. She wasn't getting better. I have found out with much research that it was not pain or illness that caused these symptoms. In her case, the opioids caused her hallucinations and nightmares! She was terrified of what was happening to her and powerless to tell us anything!
They didn't tell us that it was the Fentanyl that was keeping her in a coma. If we had known, we would have insisted on reducing the dose back to 50 mcg or preferably to 25 mcg. Even though we were not aware of fentanyl's potency, my sister spoke to the doctor about decreasing the dose. We were grasping at anything to help our mother wake up, and he said that he would consider it the next time. He never did.
I sent Momma's primary care doctor a text in India, and he wrote back that he was not aware they had taken her to the hospice wing. He contacted them to find out what was going on. I told him we wanted to take her home, and he stated she would need 24 x 7 care which I agreed to. He said he would tell them that we were going to give her Ensure and try to hydrate her, but because of the fentanyl patch, she never was able to drink much or sit up and never came out of her coma for us to take her home. They kept her at the hospice wing.
In an attempt to hydrate her, we used a straw with Ensure and water and had to coax her and rub her neck to get her to swallow. She would only take a few sips. She was trying to get better so she could go home, and she didn't understand what was happening or know that it was her daughters and granddaughter there with her. Our Dad stayed with her also, but we were all unable to comprehend what was happening. They told us that it was the dying process and gave us a pamphlet to read explaining what to expect. I ask, "How could she have gone from sitting up on Sunday and two days later be in a coma?"
They kept checking her nail beds on her hands and toes looking for blue discoloration of the skin (cyanosis) but didn't find it on her toes. They would shake their head as if they were disappointed. We read in the pamphlet that blue discoloration of the nail beds is an indication that the patient is not getting enough oxygen and a sign that the patient's organ and bodily systems are shutting down, but she didn't have cyanosis in her feet. However, after some research, I found out that fentanyl overdose can cause cyanosis around the mouth and fingernail beds - which she indeed had.1
One nurse told us how her grandfather died, how he reached his hand out and that she felt like he was reaching out to God and that she was touching him when he died, so she felt she touched God, and what a wonderful feeling that was. We didn't understand that everything they were doing was arranged to end our Mother's life. Perhaps she thought she would be in the room when our sweet Momma drew her last breath.
On the following Friday, when the nurse was replacing the fentanyl patches, I held up my hand before she put the second 50 mcg patch on, and said, "I don't want you to put that on." She said,
"Let's go to the hall."
That's where she told my sister and me,
"The hearing is the last to go," and
"If you don't let me put the second patch on, she will go through withdrawals and be in a great deal of pain."
"You don't want that, do you?"
Of course we didn't. So, we were once again talked into helping them complete their task of killing our sweet Momma. I don't know if it would have made a difference at that point, but we were desperately trying anything we could think of because we didn't know what was causing this.
On June 20, 2017 she stopped breathing and passed from an opioid overdose, dehydration and starvation. There was nothing peaceful about the way my Momma left this world. We have the records and there is no doubt that they intentionally overdosed her.
After Momma passed and her doctor was back in Georgia, we told him about what happened to Momma, and he stated that she would not have gone through withdrawal if the fentanyl patch had been reduced from 100 to 50 mcg.
Our Mother didn't even know we were with her, and we didn't get to comfort her or say goodbye. They took away her right to die in her home, to die during God's time, and to be alert and make choices. From the first day after she arrived, they drugged her against her will, as well as against my Dad's and her daughter's objections. I just can't believe this is acceptable.
After Momma passed, we took Dad to the Urgent Care center because he was feeling weak and experienced incontinence. The doctors there put him on antibiotics for a bladder infection.
On July 17th, my parents would have been married for 68 years and were looking forward to that milestone. My dad turned 90 in November 2017, and we were planning a surprise party for him. Momma was excited about this event as well and was helping us make plans. She loved her family and it was not her or God's time for her to be taken from this earth but the hospice staff had other ideas.
On that same day, two of the hospice office staff nurses - the same two that showed up at the house on June 9th and forced my parents to go to the "death house" - showed up all smiles and bringing food and acting like this was a celebration. When one of them started to come over to hug me, I quickly walked away as that encounter would not have been a pleasant one
We had to get her primary care doctor involved in order to get hospice to give us the records and they eventually sent us 158 pages. Later after I contacted the so-called "quality improvement organization," KEPRO, they requested data and they received 266 pages! Later we contacted hospice again and requested what was sent to KEPRO.
We were told we had everything but the doctors' notes which were later sent. I admit I have not read them page per page, line by line as I did the original 158 pages several times, but did see one sentence that states that my mother had advanced dementia which is a total lie! This was the first time this lie by the medical staff was ever created or stated. My mother was sharp as a tack and recalled everything with great clarity
I started contacting people the next day while I was still in Georgia and have continued to contact anyone I can think of. Many people that I have spoken with have said, "She was 87 years-old!" - As if that supposedly justifies medically killing her. They also have often said, "Under Hospice care, what did you expect? That's what they do." We didn't know!
I finally had one attorney be totally honest and say,
"Hospices get away with medical killings because you can't go up against them in court." and,
"Hospice agencies don't settle out of court." and,
"It would cost us more money than we would ever receive as a settlement."
This is about murder which is illegal and should be prosecuted! Months later in December I found out that our situation is not unique and that these medical murders are happening all across the United States. I am appalled that the elderly, chronically-ill, and disabled are being murdered in these facilities. I am appalled that these medical murders are accepted by government officials - who refuse to prosecute these crimes - by many others in the healthcare field, and even by some family members who want to receive their inheritance "now" rather than waiting, or who just don't wish to care for their family members anymore!
Additional research that I did shows that an adverse reaction to morphine (morphine toxicity) can be displayed by irritation, furrowed brows, and agitation - which Momma had, but each time she displayed these signs, they would rush in and use a needle to inject her with even more morphine and Ativan! They stated it was to calm her and keep her from being in pain. While I understand that some need high doses of opioids to relieve their severe pain, I think that in Momma's case, on top of the high dose fentanyl2 patch affecting her, the morphine and Ativan injections were used as additional poisons to kill her quicker.
Hospice had been receiving about $4,000 each month for routine hospice home care and Momma stated she was no longer pleased with their services since they kept changing the staff and would send people that were not able to bathe or assist her. At the end of May, she told them not to send anyone.
They were at risk of losing her as a patient and with that, their reimbursements from the government. We firmly believe they decided to move her to the hospice facility to end her life since they hadn't been able to overdose her at home or put her in a bed which would have hastened her demise.
The federal government imposes an annual "aggregate" cap for hospice care of approximately $28,000 per Medicaid/Medicare patient." When a patient is receiving hospice services at the routine home care level of hospice care,3 the annual cap amount is "used up" after six months. Momma was with hospice for 7 months. It appears they were no longer going to be getting "blood money!"
We received a Medicare Consumer Assessment of Healthcare Systems and Providers (CAHPS) Survey in September asking about our experience. We responded by telling them what happened and never heard back from anyone. They are supposed to be committed to ensuring quality in healthcare
Complaining to the "quality improvement organization," KEPRO, was a waste of time. They said that hospice followed the standards of care properly and they supported all the actions taken by the hospice staff. I called the District Attorney of that county and was told to file a police report. Every avenue is a dead end. This was murder which is illegal but somehow they are allowed to continue to commit these crimes!
My Dad is now 90 years old, a WWII vet, and he paid for Medicare, health insurance, and federal and state taxes his whole life so that he and my Momma would be taken care of in their old age. He feels guilty that he didn't tell them, "No, we are staying here!" He feels guilty that they tricked both of them into allowing her to go into the hospice facility on his account.
My sister feels guilty because she didn't leave the day they called. I feel guilty because I didn't get down there the next day and didn't force the issue of taking her to the hospital wing in spite of the lies they told. I feel guilty that I didn't rip off that fentanyl patch and do something rather than watch her die slowly.
Our entire family has been devastated by the loss of our Mother and knowing her life was taken away by people who were inhumane. Momma Frances with Durwood and Martha The hypocrisy of the hospice agency - who state that they exist to take care of people and do no harm - is a travesty. It is a mockery of what they are supposed to stand for. I no longer trust any of these agencies and will protect my Dad and my family from ever having this happen to any of them. The people who should feel guilty and lose sleep because they know what they have done probably have no conscience and sleep peacefully. They don't appear to care at all.
This is something that all of us re-live over and over in our minds and tell ourselves, "If only we had known or done this or that!" It is a memory that haunts us and we can't escape. I go to bed thinking about her and remember seeing her in that state. I wake up in the middle of the night and think,
"What could I have done differently?"
"Why didn't I do this?"
"Why didn't I do that?"
I wake up in the morning to re-live it all and do the "What if - ?" all over again!
This is the worst nightmare that I have ever had and I do not want others to go through this hell!
There has to be something we can do to stop them from murdering our elderly.
I pray someone reading this about how Momma was murdered will see the signs and stop this from happening to their loved ones. I wish I had read about this sooner and saved my sweet Momma.
Sincerely,
Marsha Joiner
February 2018
Note from Ron Panzer: Due to the extreme symptoms often experienced in the end-stages of many illnesses, many quite potent medications are routinely used at the end-of-life. Sometimes, the use of these medications varies from the common practice in those who do not suffer from a terminal illness. However, hospice and palliative care standards require that only those medications actually needed by a specific patient be administered for their actual condition, in the dose and timing that is sufficient to relieve their symptoms. Giving medications that are not needed at all, or in a dose that is clearly more than is sufficient to relieve their symptoms, is a violation of professional hospice and palliative standards of care.
Administering anything other than what a patient requires is a violation of the physicians' and nurses' duty to serve the patient. Administering medications to a patient who has refused that medication or class of medications is commonly known to be a crime. Administering medications to such patient when the individual with the medical power of attorney also has stated that these medications are refused is also a crime. Such violations have become too common in rogue hospices whose staff do not respect the patient's right to refuse a medication! These staff members have betrayed the original pro-life mission of hospice and palliative care practice and violate their duty under their State's nurse or physician practice acts.
Any time a patient's life is ended through negligence, abuse, or consciously imposed death, but the death is not recorded as a crime or "euthanasia," that medical killing is an example of stealth euthanasia which is pervasive in a health "care" system that is increasingly becoming hostile to life. These are the signs of the culture of death. If you wish to understand how hospice was intentionally tainted, see the Four Part Wesley J Smith, JD/Ira Byock, MD Expose.
Patients, family members, and patient advocates need to recognize the signs that should be "red flags" warning them that the staff are not listening to the patient and respecting their wishes. Hopefully, that is not the case, but if it is, we must remember that the patient always has the right to refuse an unwanted and unneeded medication or treatment. The right to refuse is a power that still resides within the patient, closest family member, or patient advocate who has the medical power of attorney. If we stand firm and assert this right under law, the staff cannot legally administer those unwanted medications or treatments. If they still insist, then that is an indication it is time to look for another agency or faciiity that will honor the patient's wishes.
In some cases, if a pro-life hospice can be found (they are becoming rarer and rarer), that would be the best solution for a patient clearly suffering from an end-stage disease recognized as bringing the patient near to the end-of-life. If one cannot be found, consider a home healthcare agency. Many famiies and patients are lured into hospice with the promise that the hospice will "provide everything for free," but what good are free services when the patient is already dead due to an imposed death that is hastened by the staff? Listen to your instincts, your intuition, what all logic tells you is happening, and if it does not appear to be right, then it's time to terminate the services of that hospice or other agency.
If you decide to terminate services, do not tell the hospice staff you intend to terminate services until you have found another agency and let them tell the hospice staff! Never raise your voice or act angrily to them. Some family members have actually been "banned" from seeing their own loved ones, because the hospice did not wish to cooperate! Simply state the patient's wishes about medications or treatments calmly but firmly without wavering.
Look for another agency and have them arrive on site with admission papers already drawn up to transfer care into their service. Let them explain that they have already taken over and have assumed care (and will transport the patient right then if this is in a faciiity). If the patient will be going into home health care, the hospice benefit is "revoked" at that time (not before the other agency is already on site and ready to take over), and the patient goes back to regular Medicare (if on Medicare).
Once a patient is "in the system," a patient requiring care cannot simply "go home" without an agency supervising or following the patient and making sure the care and medical orders are being implemented. That would be considered "abandonment" in the eyes of the authorities (like social services and health care department). This is why one needs to arrange for another agency to take over. Home health care agencies are much less likely to hasten death. Make sure whatever agency you go to is not affiliated with the agency or health care or regional system you are using that is ignoring the patient's wishes!
Endnotes:
1 "Characteristics of Fentanyl Overdose" Morbidity and Mortality Weekly Report - Massachusetts, 2014-2016; April 14, 2017 / 66(14); 382-386; U.S. Centers for Disease Control and Prevention www.cdc.gov/mmwr/volumes/66/wr/mm6614a2.htm "A majority of respondents who witnessed a suspected fentanyl overdose (75%) described symptoms as occurring rapidly, within seconds to minutes. Twenty-five percent reported witnessing or experiencing an overdose when fentanyl was insufflated (snorted), and the remainder reported the overdose always involved injecting fentanyl. Atypical overdose characteristics described by respondents during suspected fentanyl overdose included immediate blue discoloration of the lips (20%), gurgling sounds with breathing (16%), stiffening of the body or seizure-like activity (13%), foaming at the mouth (6%), and confusion or strange affect before unresponsiveness (6%). [Emphasis added.] [Back]
2 "Taking certain medications with fentanyl may increase the risk of serious or life-threatening breathing problems, sedation, or coma." This site lists many medications but the other medication being used on my Momma with fentanyl was lorazepam (Ativan), which is listed as a potential risk when mixed with fentanyl or other opioid medications. The manufacturer states that the doctor may need to change the dosages of medications and monitor carefully for adverse effects. A 100 mcg transdermal fentanyl patch was applied to Momma and 100 mcg is the largest dose available through one patch.See:
Fentanyl Transdermal Patch ("Duragesic Patch")
Staff Accessed February 2018 Medline Plus
https://medlineplus.gov/druginfo/meds/a601202.html Fentanyl "should be used with caution in elderly, cachectic, or debilitated patients as they may have altered pharmacokinetics due to poor fat stores, muscle wasting or altered clearance."
"Transdermal and Parenteral Fentanyl Dosage Calculations and Conversions"
Staff Accessed 2018 American Society of Health-System Pharmacists
www.ashp.org/-/media/store-files/p1985-sample-chapter-5.ashx [Back]
3 "Routine Home Care Level of Care for Hospice Patients"
By Ron Panzer Accessed 2018 Hospice Patients Alliance
www.hospicepatients.org/hospic24.html
"Hospice Cente" Staff Accessed 2018 U.S. Centers for Medicare " Medicaid Services
" Updates to the Hospice Aggregate Cap"
By Katie Wehri September 1, 2017 HealthcareProviderSolutions.com
https://healthcareprovidersolutions.com/updates-hospice-aggregate-cap/ [Back]
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