WHY I BECAME AN ELDER ADVOCATE
By Marsha Joiner – Talk Show Host, Betrayed by Hospice
Many of us blindly trust doctors and nurses. However, believing everything healthcare providers tell us regarding the care of vulnerable patients, especially the elderly, can result in an unimaginable death toll. Marsha Joiner painfully describes what happened to her dear mother. She does this for our benefit – to warn and advise us so that we will be armed to defend the lives of our loved ones and other vulnerable patients, especially in hospice settings. Thank you, Marsha! – Julie Grimstad, President of HALO
My mom, Frances Souther, was the sweetest, most compassionate southern belle. She had a beautiful smile that lit up a room, a listening ear, and a shoulder for anyone. She loved my dad, Durwood. They were devoted to their three children, four grandchildren, and nine great grandchildren. Mom was my best friend and, although there were 700 miles between us, we talked almost daily. Mom and Dad would have celebrated their 68th anniversary in less than a month when my world was shattered.
In October 2016, while my sister and I were visiting our parents in Georgia, our 86-year-old mother became weak. Having previously injured her leg, a nurse came to the house once a week to check on the wound. This nurse determined that Mom was anemic. Her doctor directed us to take her to the hospital. There, an endoscopy and colonoscopy were performed to see if Mom was bleeding internally or had cancer. I did not want these invasive tests done because she had congestive heart failure (CHF) which was being successfully treated with medication. Her doctor, concerned that anesthesia would be dangerous for a patient with CHF, had advised against hip replacement surgery. These tests required anesthesia. I was afraid of losing Mom, but she wanted to know, so I acquiesced. The procedures revealed no bleeding or cancer.
At this time, Mom’s primary care physician, who also was the hospice medical director, informed us that she qualified for hospice because she had CHF. Knowing we lived far away, he told us hospice also could offer Dad assistance caring for Mom. Since Dad had been the hospice chaplain at that facility for 15 years, our family felt she would be in safe hands. My sister still asked, “You won’t hasten her death though – right?” The reply was, “Oh no, we don’t do that! We won’t do anything heroic to prolong her life, but we won’t hasten her death.” We were told she could not call 911 or go to the hospital once admitted to hospice.
In November 2016, Mom signed up with hospice. They promised to provide a nurse once a week to check on her and a certified nurses aid (CNA) twice a week to provide baths, light housekeeping, sitter service, and some meals. We already employed April, who for years had been bathing Mom and helping with household chores. April had become part of our family, but we thought more help would be good for Dad.
Records can be and are altered.
Things seemed okay at first. Then, in December, while the CNA was helping Mom from her lift chair to the bedside toilet, she slipped and hit the floor. 911 was called to assist getting her up. After Mom’s death, we retrieved her medical records which stated the CNA was driving to the house when Dad called and said Mom fell. I then obtained the police records showing the time of this incident. Mom’s fall occurred an hour after the CNA had arrived at the house.
Records can be and are altered but we were not aware of this. The hospice called to tell me Mom had fallen and claimed they didn’t know how it happened. Their story was different than my parents’ account. The hospice wanted to put Mom in a hospital bed. The medical records say I did not call back to give an answer, but my parents had already refused the hospital bed, and both were capable of making decisions. I did not realize the hospice had already determined my parents shouldn’t be making decisions.
It’s important to note here that Mom was on oxycodone-acetaminophen (oxycodone is an opioid) to relieve pain caused by the lack of cartilage in her hip and was afraid of narcotics (opioids are narcotics). Therefore, she kept track of the time between doses of this combination drug in her calendar and would hold out as long as possible before seeking relief.
The medical records indicate that Mom had injured her coccyx, apparently a result of the fall. The nurse wanted to start her on a 50 mcg fentanyl patch (an opioid, fentanyl is about 100 times more potent than an equal amount of morphine). Mom objected numerous times when asked but, after a couple of weeks, she agreed because she was still in pain. She was never taken to a doctor. The only treatment she received was increasing amounts of pain medication.
Mom didn’t answer the phone as often when I called. Dad said she was sleeping a lot. We should have been alert and done some research then. We didn’t know she was being given fentanyl; we didn’t even know what that drug was.
It is so important to obtain the medical records, which can be acquired while a patient is in any healthcare setting, and ask questions. Don’t wait until it’s too late!
Be always on alert!
In February 2017, my sister and I visited our parents again. Mom would fall asleep in the middle of conversations, but we were not alarmed since Mom got up a lot during the night because she was taking Lasix, a water pill.
Looking back, I regard two incidents as definite red flags. I point these out to underscore how vitally important it is to be always on alert.
- An older nurse with whom Dad had worked told me that Mom did not appreciate what Dad did for her because she yelled at him when his hearing aids weren’t in. I asked how else he would hear her and shrugged it off. Mom never yelled in anger. I should have paid closer attention.
- Another nurse told my sister that, when the oxygen tank got low on water, Mom would yell at Dad because he didn’t keep it full and her nose got dry. We wondered why Dad should be responsible for this. Why wouldn’t the CNA and nurse check it each time they were with Mom?
At the end of May 2017, the medical records state that Mom told the hospice office not to send a CNA the next time because she was tired of having someone new each time. After Mom was gone, Dad told us that the CNAs were either physically incapable of helping Mom to her bedside toilet and giving baths or were unwilling to do much more than sit in a chair and play on their phones. Dad took care of Mom while the CNAs were there but didn’t complain about this to us. April would give Mom baths when she came on Tuesdays and Thursdays.
The head nurse called to inform my parents that hospice would no longer be able to provide service on Mondays and Wednesdays and they knew April couldn’t change her days. Subsequently, Mom had a bout of constipation, was given Dulcolax, and had an accident. On May 31, 2017, she called the hospice to ask if someone could assist her. This is what led to the end.
On Friday, June 9, 2017, the hospice nurse told my parents that they were calling a transport unit to take Mom and Dad to the hospice wing at the hospital to give Dad respite care for a few days. Mom had been clear that, when her time came to pass naturally, she wanted to be in the comfort of her home. The hospice had other plans for her.
Mom had been recertified for hospice by her doctor just before he left for India for three weeks. What an opportune time to strike! She called me while I was outside and left a message that everything was okay, but she needed to talk to me. She called my sister and explained they were going to the facility for a few days for Dad to get rest. My sister talked to the nurse who was at the house and asked if she should come immediately. The nurse said, “No rush,” and assured her they would keep them three or four days and bring them home. My sister and I made plans to go to Georgia. Mom called our brother with the same information. There was no alarm in her voice.
Sunday, June 11, 2017, April visited Mom at the facility and sent photos showing Mom alert and sitting up in bed. She was talking and eating dinner, and asked April to hand her the bag with lipstick and comb so she could fix herself up. She was fine, other than wanting to go home.
The medical records indicate that she was sad and had stated she was afraid of morphine! She said she didn’t want it but was given it anyway. She was told that her pain medication caused constipation and morphine would be better. One of the most common side effects of morphine is constipation. So that was a blatant lie.
Monday, June 12th, the medical record shows Mom’s medication was changed from 50 mcg to 100 mcg fentanyl and that her status was changed from respite care (to give Dad rest) to end of life palliative care! It further shows that, within an hour of being given the increased dosage of fentanyl, she started moaning and striking out and couldn’t be consoled. Mom stopped answering the phone. I called the nurses station on Wednesday to find out why and was told they were giving her morphine, Ativan, and fentanyl. My sister and I conference called and told them to stop the morphine and Ativan, but we had no knowledge of fentanyl so incorrectly did not tell them to stop that. We thought fentanyl patches were like the Lidoderm patches (containing lidocaine, a topical anesthetic, not an opioid) she had used for years. There are repeated notations in the record that Mom was crying, moaning, restless, unable to respond, and other comments indicating she was fearful and drifting in and out of consciousness. Hospice staff could hear her moaning from the nurse’s station! It is so alarming to read what Mom went through! The guilt mounts.
They said the right words, but they were lies.
When my sister and I arrived, Mom was unresponsive. The nurse told us the morphine and Ativan were stopped over 24 hours ago so drugs obviously weren’t the cause of her comatose state, but rather the fact that our mom was dying. I contacted her doctor in India and told him we wanted to take her home. He talked to the facility. We were given “permission” to give her Ensure. My sister and I attempted several times to take her to the hospital but were talked out of it. The hospice nurses told us she would die if they gave her IV fluids and “You don’t want your mom to die of drowning, do you, Sweetie? That’s a horrible way to die.” They seemed like they cared. They said the right words. We didn’t know they were lies.
They gave us a pamphlet that described the signs of the dying process which Mom was now displaying. We were devastated. We tried giving her sips of water with a straw, rubbing her neck, and talking her into swallowing. Mom attempted to get out of bed. We thought it was because she didn’t want to wet the bed, even though she had a catheter. Now I think perhaps she was trying to escape because she knew something was terribly wrong. I wish we hadn’t been so gullible.
The hospice had already decided she was going to die when they tricked my parents into going to the death wing.
They convinced us she was in pain and we needed to let them give her something to relieve it. We were assured that it was “only a whisper of morphine” like one nurse gave her 10-year-old daughter for a broken arm. The records show she was also being given Ativan again. We stayed with her around the clock while she grimaced, moaned, and was so confused. We begged for help and were given nothing but lies. They said, “This is the dying process. You need to accept it.”
Our precious mom took her last breath at 6:20 a.m. on June 20th, 2017. Her death was due to a combination of toxic drugs – fentanyl, morphine, and Ativan – and starvation and dehydration. There was nothing peaceful about her death and it haunts me.
“Hospice gets away with medical killings…”
We knew that what we had witnessed was terribly wrong. I contacted at least a dozen attorneys. All said how sorry they were and that we were probably right about the wrongful death, but they couldn’t/wouldn’t take the case. Nevertheless, they encouraged me to continue to look for a firm that would. Finally, one attorney told me, “Hospice gets away with medical killings because you can’t go up against them in court and they don’t settle out of court. It would cost us more money than we would ever receive as a settlement.” So that was it. Doors closed, but I needed answers.
I moved Dad 700 miles to live with my husband and me. His mail came to our home. He received a questionnaire about our experience with that hospice service from a hospice oversight organization. We rated the hospice one star and detailed what happened. We never heard back from them.
The hospice billed my parents’ insurance company $35,000 for Mom’s care the month they murdered her. Medicare ultimately paid $8000 for that month. The previous month, the bill was just under $4000. Some hospices make “a killing” off killing patients.
I contacted Keystone Peer Review Organization (KEPRO), an agency that is supposed to provide oversight and ensure that patients are being taken care of properly by hospices. KEPRO responded that the hospice had acted properly to remove her from the home because it wasn’t safe! They moved her from her home and executed her in 10 days and that was safe?
I tried to “leave no stone unturned” as I sought some sort of resolution or justice, to no avail.
Still looking for an explanation, I Googled “Are people being euthanized?” Hospice Patients Alliance (HPA is no longer in operation) popped up and I discovered that killing the most vulnerable patients has been going on for years. I spoke to Ron Panzer, HPA’s founder, read his articles on stealth euthanasia, and realized we were not alone, although I still felt very much alone. I was lost and grieving to the point of not being able to sleep because of the nightmares and unrelenting questions.
Why didn’t I do something? Why did I listen to the hospice nurses? Why didn’t we just move her to a hospital regardless of what they said? I was haunted that I had not protected my precious Momma. The guilt was intense, but I had to look after my Dad and protect him and take care of other obligations. Mom raised me to be strong and not give up, so I didn’t.
I am now an elder advocate, warning others.
I met Marti Oakley, a producer with TS Radio. We forged the program Betrayed by Hospice to share information with others who might be as naïve as my sister and I were, blindly accepting what they are told. This program provides a forum for other victims to tell the tragic stories of their loved ones’ cruelly hastened deaths. Their stories are so similar – the drugs used, the lies and manipulation, the betrayal by medical staff. Also, many experts share their expertise with listeners, exposing the red flags and explaining actions to take to protect vulnerable patients.
The most important advice I give is this: Hospice cannot do harm if people do not enroll. If they do enroll, they must stay on top of everything!
Thank you to HALO for allowing me to share Mom’s story.
RESOURCES AND NOTES REGARDING HOSPICE
By Marsha Joiner
I cannot bring my precious mom back, but maybe I can help you save a loved one’s life. There are many educational and supportive resources available and a lot of people standing together to protect all our loved ones. If you need help or advice, just ask.
It is my mission to spread the truth. You are invited to listen to my programs on TS Radio, Betrayed by Hospice. If you wish to tell your story, please contact me at firstname.lastname@example.org.
Frances Souther’s story, including discussion with her husband and daughters by blood, by marriage and by grace, can be heard at this link.
I’ve learned so much from the Healthcare Advocacy and Leadership Organization (HALO). HALO’s website, www.halovoice.org, is highly informative. Its fact sheet Drugs Commonly Used in Hospice and Palliative Care lists drugs and their effects and provides general guidelines about pain control. It is imperative to know this information before your loved one is in a situation where you need the data. Knowledge is power!
Stealth Euthanasia a book by Ron Panzer is a masterwork on the subject of medical killing. His books and articles in pdf form are available and freely emailed to anyone. Requests should be sent to Ron at email@example.com.
Making a Difference, A Guide for Defending the Medically Vulnerable is a 16-page HALO publication “designed to help YOU navigate the complicated and sometimes perilous healthcare system.” It includes “Question to Ask a Hospice BEFORE Admission.” To order, click here or call 888-221-4256 (HALO).
Killing for Profit – The Dark Side of Hospice, a book by Michelle Young Doers, Respiratory Therapist, is a good source of information about hospice betrayals.
We must stand together for JUSTICE!
The criteria for enrollment in hospice have been expanded to include people who are not terminally ill and expected to die within six months. For example:
- People who can be treated with medication to control their diseases.
- People with declining mental alertness/cognitive impairments such as dementia.
- People who have difficulty feeding or dressing themselves or have become incontinent,
- People who have had more than three hospitalizations over a 4–6-month period.
For criteria, see “Is it Time for Hospice? 3 Questions to Ask Yourself,” (VITAS Healthcare).
Oftentimes, a patient’s symptoms can be caused by something as treatable as a urinary tract infection (UTI). However, the cause may not be investigated or treated because elderly patients are considered expendable and eliminating them is encouraged.
Until there is a change in the criteria to enroll, and until all hospices have truthful discussions with patients and families about the side effects of the drugs they use and are required to obtain informed consent before administering them, people will continue to be murdered!
I have no doubt that the government is aware of these vicious killings. Yet government officials do nothing because hastened deaths save money for Medicare and Medicaid. As for hospice nurses, either they have been inadequately taught the dangerous side effects and the appropriate administration of powerful pain medications and therefore should not be administering them, or they are aware and thus complicit in premeditated murder.
It is crucially important to request medical records while your loved one is in the care of a hospice service or medical facility and research the drugs being given. You have rights! You can refuse the drugs or the care plan. You can change to another hospice. You can revoke hospice at any time and reinstate the patient’s former treatment plan.
If you have lost a loved one under suspicious circumstances in any healthcare setting, I have been where you are and understand. Here are my suggestions.
- Acquire their medical records so you can know what happened and what drugs were used. Know the facts. Don’t believe everything you are told.
- Do not just accept what happened. Submit reports in writing to the hospice administrator and to the proper government agencies. (See “Safeguards for Medicare Patients in Hospice Care.”) If investigations are done one day, your loved one’s name and experience will be documented so investigators will realize it was not just a handful, but thousands of people who were abused and killed.
- Do not be ashamed to ask for help to get through your grief. This is a horrible burden to bear alone. You need to express your feelings and not internalize your pain.
- Seek justice but do not let this stop you from living your life and finding peace.
- Volunteer to be a HALO patient advocate and offer support to others.
- Do not be silent. Share your story to warn others so they can avoid suffering the same horror.
You are not to blame for what happened to your loved one, but you can help others before it is too late for them to save their loved ones. Stand strong. Protect those left behind. We must stand together for JUSTICE – Join Us Supporting The Innocent Culled Elderly.
WARNING: In 2016, the U.S. Food and Drug Administration (FDA) ordered its “strongest warnings” be added to labels on opioid pain medications (morphine and fentanyl are opioids) and benzodiazepines (Ativan is one) after finding that the growing use of opioid medicines combined with benzodiazepines or other drugs that depress the central nervous system has resulted in serious side effects, including slowed or difficult breathing, and deaths. [Source.]