Rapid decline in family member’s health within weeks of taking Medications prescribed by hospice.

A family member who was 97, was diagnosed with terminal cancer around May 28, 2022.  At the advise of his primary care doctor, he agreed to be cared for by hospice. At the time he was diagnosed, his health had remained about the same as it had been for the prior year. He was able to walk with a walker, was lucid, coherent, watch tv, go to the bathroom unassisted and play cards.

Our family thought he might have about 6 months to live since there was no noticeable changes in his health.

After hospice care began on 5/30/22,  we noticed a rapid decline in his health within a couple of weeks of taking Medications prescribed by hospice which included symptoms of being “drugged up” which we had never seen before.

It’s important to note that the only medication he had been taking was Fexofenadine to control excess phlegm & mucus. He had been taking this for years and it was prescribed by his primary care physician, with no noticeable side effects.

The medications hospice prescribed were as follows;

Medication	Dosage	Time	Purpose (per hospice)
Mirtazapine	2.5 mg	bedtime	insomnia / appetite
Methadone	2.5 mg	every 12 hours	pain
Metoclopramide	5 mg	every 12 hours	routinely – nausea / vomiting
Dexamethasone	4 mg	morning	inflammation / pain
Senna	8.6 mg	bedtime	to prevent constipation
Hydromorphone	2 mg	every hour as needed	as needed for pain (this given during his last 2 days at home)
Alprazolam	0.25 mg	every 6 hours	as needed for anxiety (this given during his last 2 days at home to calm him)

After a few weeks, when we began noticing symptoms of him being “drugged up”, so we researched the medications hospice prescribed.

Mirtazapine was particularly concerning. According to medlineplus.gov, it’s prescribed “to treat depression”. He never had any symptoms of depression during his entire life so we couldn’t understand why they prescribed such a medication. Some of the side effects include; drowsiness, dizziness, anxiousness and confusion.

Methadone was another concern because, at the time he began care from hospice, he wasn’t complaining about pain.  According to medlineplus.gov, “Methadone is used to relieve severe pain in people who are expected to need pain medication around the clock for a long time and who cannot be treated with other medications”.   One of the side effects listed is “stomach pain” which is what he complained about on the day they took him to their facility, days before he died.  Of course, we have no way of knowing if the stomach pain was due to the Methadone or cancer.

Metoclopramide, per medlineplus.gov is “used to relieve heartburn and speed the healing of ulcers and sores in the esophagus (tube that connects the mouth to the stomach) in people who have gastroesophageal reflux disease” .  He didn’t have any preexisting “gastroesophageal reflux disease”.  A nurse from hospice explained that Metoclopramide was prescribed for “nausea / vomiting”.

Dexamethasone, per medlineplus.gov “relieves inflammation (swelling, heat, redness, and pain) and is used to treat certain forms of arthritis; skin, blood, kidney, eye, thyroid, and intestinal disorders (e.g., colitis); severe allergies; and asthma”.  Side effects include; vomiting, dizziness, insomnia, restlessness, depression and anxiety.

After researching the medications hospice was giving such as Mirtazapine and Methadone, we raised our concerns to his hospice assigned nurse. She agreed for us to stop giving the Mirtazapine to him. This was around 3 weeks into their treatment and by this time, he was sleeping a lot when setting anywhere, such as in his wheelchair or on the couch. He was not yet bedridden.

I also called his primary doctor’s office (which he had been going to for over 30 years) to discuss & express my concerns over the medications hospice was giving him. A nurse who worked there who expressed how much she cared about our family member came on the phone. This nurse who told me in the past to call her if we ever needed any help, was rude and would not listen to me or let me get a word in. She said there was nothing they could do because he was under hospice care.

Around Friday June 24, 2022 he walked into the living room unassisted for the last time. When it was time for him to go to bed, he said he could not stand up so I put him in his wheelchair and helped him get into bed. This is where he remained for the following few days until hospice came and got him.

Saturday 6/25/22, he sleep almost the entire day in his bed. This was the first time he didn’t get out of bed.

He was awake some on Sunday 6/26/22. By this time he was only able to drink ensure shakes, no solid food and was bedridden. Sunday evening was the first time I heard him make delusional comments. He rang the call button and when I went into his room he asked me if he was on the “radio” and “CNN”. He also asked me to confirm his name and asked where he was. I called the nurse and she said to give him some Alprazolam to calm him down. He then went to sleep.

Monday, 6/27/22 he sleep the entire day.

Tuesday, 6/28/22 he was awake sometimes. He drank 2 ensures and a couple of bottles of spring water. I changed his diaper in the morning. He kept saying he had to pee. I was able to assist him to pee in a urine bottle several times. He continued saying he had to pee and was constantly pulling on his diaper. He seemed “out-of-his-head” and irrational. We checked his diaper and it was dry. Around 3;30 pm I called the nurse and asked what could be done to calm him down. She told me to give him Alprazolam, so I did.

Around 6PM he was still obsessing about peeing and pulling his diaper so I called hospice back again and they told me to give him a Methadone. They also told me to give him a Alprazolam around 9:30 pm, which I did.

Around 10:15 pm he said he had to throw up so he began throwing up. I called hospice and they sent a nurse to the home.  She arrived around 11:00 pm and gave him medications which calmed him down and put him to sleep. She said his oxygen level was a bit low so she hooked him up to an oxygen machine. This was the first time (to my knowledge) his oxygen level was checked.

Around 11:45, after she had been gone for about 15 minutes, I noticed a gargling sound coming from his throat which indicated he had fluids in his throat. I called hospice back about this and they said they would be sending people to get him and admit him to the hospice center. When they arrived, he was fast asleep and didn’t wake up.

Wednesday, 6/29/22, we went to visit him in the hospice center. It appeared that he was heavily sedated… he never woke up. I asked them if they were giving him any fluids and they said they weren’t.

He remained fast asleep for the following days and died on 7/2/22.

The facility our family member was taken to was very nice and so were the staff.  Everyone we had contact with at hospice was kind and seemed professional, so we trusted them.

We did everything we could to keep him alive, giving him water & ensures until hospice took him. We thought he would get  care similar to what he would receive at a hospital. It now seems they’re taking him to their facility, was a death sentence, due to them not giving him water or sustenance, and drugs which kept him sedated so he could never wake up.

It’s astounding that he could go from being able to do things he were able to do for the past year to dying within 30 days. I can’t help but question hospice prescribing medications such as Mirtazapine, when he had no prior history of depression or mental disorders.

We can’t help but wonder if the medications caused him to do & say delusional things towards the end of his at-home care. This has left us with questions as to weather his rapid decline was due to the drugs hospice was giving him or the progression of his cancer.

I’m not a medical professional so I can’t make a professional assessment as to medical care our family member received. I’m posting this so medical professionals can post their opinions (below in the comments) as to standard of care our family member received and for family’s who’s had similar experiences with hospice.

If you’d like to contact the author of this article, please us the contact box below.

 

 

Problems with Hospice At-Home Care

They came 3 days a week to give a bath and change diapers. 3 days a week was sufficient for giving him a bath, but only 3 times a week to change his diaper, one time in the mornings, 3 days a week is not sufficient for those who has difficulties changing diapers on an adult.

No 24/7 assistance available for changing diapers. Diaper changing was not discussed when our family member signed up for hospice and it’s not a task everyone is able to do… especially diapers with poop, then cleanup’s afterwards. Plus having to see your elderly family member naked. No assistance in the evening, on off days or the weekend is available with hospice.

We asked if they could recommend a service we could pay to out of our own pocket to change diapers & cleanup as needed and they could not recommend such a service. In our case, we only had to change diapers a few times because he was able to go to the bathroom & pee in a urinal bottle until the last few days he was with us. We did find a service on our own which we were going to start using which could get here within 1 hour, when-ever we needed them, but hospice took our family member to their facility before the service we found could start.

Nurse / medical professional came only once a week. They don’t offer daily at-home medical care. This means family members are responsible for administering medications / pills.

Because of the lack of at-home diaper changing support and once a week medical visits, hospice is more of a do-it-yourself, wing-it program in which family members does almost everything so it’s not full at-home medical service.

 

ARTICLES:

Patients Want A ‘Good Death’ At Home, But Hospice Care Can Badly Strain Families

Fewer Americans are dying in a hospital, under the close supervision of doctors and nurses. That trend has been boosted by an expanded Medicare benefit that helps people live out their final days at home in hospice care. But as home hospice grows, so has the burden on families left to provide much of the care.

Per the above article: “I’m not anti-hospice at all,” said Joy Johnston, who relocated to New Mexico years ago at age 40 to care for her dying mother.

“But I think people aren’t prepared for all the effort that it takes to give someone a good death at home.”

Surveys show dying at home is what most Americans say they want. But it’s “not all it’s cracked up to be,” said Johnston, a caregiver advocate and writer from Atlanta.

According to a recent Kaiser Family Foundation poll, 7 in 10 Americans say they would prefer to die at home. And that’s the direction the health care system is moving, as part of an effort to avoid unnecessary and expensive treatment at the end of life.

Like a growing share of hospice patients, McCasland has dementia. She needs a service that hospice rarely provides — a one-on-one health attendant for several hours, so the regular family caregiver can get a break each day. When Velez is not around, John McCasland — Jean’s husband of nearly 50 years — is the person in charge at home.

“I have said from the beginning that was my intention, that she would be at home through the duration, as long as I was able,” John said.

But what hospice provided wasn’t enough help. So he has had to drain the couple’s retirement accounts to hire Velez, a private caregiver, out-of-pocket.

Hospice agencies usually bring in a hospital bed, an oxygen machine or a wheelchair — whatever equipment is needed. Prescriptions show up at the house for pain and anxiety. But hands-on help is scarce. According to Medicare, hospice benefits can include home health aides and homemaker services. But in practice, that in-person help is often limited to a couple of baths a week. Medicare data reveals that, on average, a nurse or aide is only in the patient’s home 30 minutes, or so, per day.

Families often don’t consider whether they’re getting their money’s worth because they’re not paying for hospice services directly: Medicare gets the bills.

“It does take a toll” on families, said Katherine Ornstein, an associate professor of geriatrics and palliative medicine at Mount Sinai Hospital in New York, who studies what typically happens in the last years of patients’ lives. The increasing burden on loved ones — especially spouses — is reaching a breaking point for many people, her research shows. This particular type of stress has even been given a name: caregiver syndrome.

“Our long-term-care system in this country is really using families — unpaid family members,” she said. “That’s our situation.”

A few high-profile advocates have even started questioning whether hospice is right for everybody. For some who have gone through home hospice with a loved one, the difficult experience has led them to want something else for themselves.

 

Hospice Killed My Father.

I can’t believe I’m reading all these horrible posts about Hospice now. I wish I found out about this earlier. My father died at the age of 73, he had cancer before but he did surgery to remove them and also undergone treatments. This was 8 years ago.

Per the above article: “Those nurses came and brought pain killers and other drugs. MORPHINE is what they told us to give my dad. I’ve seen the dramatic changes on my dad once he started taking the morphine. I’ve never seen the doctor EVER. the nurses just do diagnosis over the phone. On the night before my dad passes away. The nurse ordered for us to continue giving morphine to my dad every 20 mins. My dad passed away few mins after the nurse from hospice came. I didn’t know ANYTHING about hospice before. It’s been 2 months since my father passed away. We only found out about this now and are very devastated. English is not our first language so we were pretty much lied to and taken advantage of. PLEASE DON’T TAKE YOUR FATHER OR MOTHER OR ELDER FAMILY MEMBERS TO HOSPICE. THEY WILL KILL THEM WITH MORPHINE. I wish I knew about this earlier so I could save my dad. I hope hospice gets caught soon and someone to sue them. I know it is in the law. ———- “The Controlled Substances Act is set forth at Title 21 of the United States Code: 21 USC, subchapter1, starting at part A, Section 801. The DEA states that it is responsible for (among many other responsibilities): ” Enforcement of the provisions of the Controlled Substances Act as they pertain to the manufacture, distribution, and dispensing of legally produced controlled substances. ” The DEA also has the authority for: “Coordination and cooperation with federal, state and local law enforcement officials on mutual drug enforcement efforts ” 

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