Hospice Patients Alliance: Patient Advocates

My Journey with Hospice

(C____ (anonymous) tells us how he had to fight every step of the way
with hospice staff in order to protect his Mom)

By C_____ (anonymous)

May 1, 2019


When we discovered my mom had multiple illnesses including advanced vascular dementia, congestive heart failure, and stage 4 terminal lung cancer, at the advice of the palliative care folks at the hospital, we decided to have her enrolled in hospice care. I had heard of hospice care, and though my mom was Catholic and feared being medicated to death by hospice -- which was against her beliefs and wishes -- we decided hospice was the best option available.

To ease her fears, two of us put our lives on hold and moved in with her to manage the medications as well as her food and assure she would not be in danger. We initially thought that we could prevent any rogue hospice staff or family members from giving too many meds, but this experience taught us how naive we were. I am proud to say that we mostly avoided the violations of her wishes that she feared even if we did not have medical training, but it was far more challenging than we anticipated. We did learn a lot and hope to share what we faced: our successes and failures, and how others can avoid ending their loved one's lives before their natural time.

The first and most important thing that I learned was that hospice staff tend to approach any type of problem patients have involving pain or discomfort by administering medication. That includes problems that medication did not and will not help.

The second thing I learned was that hospice staff tend to blame everything on "disease progression," then they use this argument as justification to administer even more medication - particularly Ativan and opioids like morphine and hydrocodone.

The third thing I learned was that the staff did not teach family members about alternatives to medication, which can be as effective as, or even more effective than simply increasing doses.

The fourth thing I learned was that the hospice staff used their position in authority to intimidate us into obeying them and then acting according to their ideology which for me was the most disappointing and sinister part of the process. Fifth, I learned a lot about the emotional impacts of being a caretaker for a loved one.

I wish I would have learned these things before my mom needed hospice care, but unfortunately, we discovered the support network very late. If you are reading this, then I hope it means you have discovered help early and can avoid some of the pain that comes with learning the hard way as you go through this difficult time, and I hope this article can be of some small assistance on your journey.

Pain Management

On the first visit, the hospice nurse explained a few things. One of them was that our mom would not always be able to express in words that she was in pain, and therefore, we needed to rely on facial expressions and vocal intonations. They were very unclear as to which facial expressions or vocal intonations exactly would indicate she was in pain, but if we ever questioned this, we were told, "It's better to err on the side of giving medication to relieve pain." As my mom suffered from advanced dementia, many times she did not communicate with words, but only facial expressions and vocal intonations - so this advice worried us.

Hospice staff told us, "Don't wait to give a medication if you see any indication of pain (verbal or non-verbal)." They made it clear that progression of the disease would likely cause great pain and we needed to be very vigilant. They also told us that pain could be physical or emotional and both types should be controlled by using medication. If our loved one could not take the pills, we were instructed to give liquid morphine as the liquid can be put under her tongue or in the back of her throat while she was unconscious.

We did not know how to react to this information. Hospice staff had just given us a "care package" with lots of strong medications that we were unfamiliar with, and we were now in charge of giving them to our mother who had previously only taken Tylenol for pain and did not like taking medication. I decided to put one critical rule into place:

When I saw a facial expression (like a frown), vocal intonation (like a moan), or an expression in body language (like clenched fists) I would give myself 15-20 minutes to investigate the root cause and test alternative pain relief before adding medications.

When I was using this rule, I found that my mom's expression of pain looked identical to lots of different things including thirst, hunger, needing to go to the bathroom, sitting too much and wanting to move, gas, itchiness, inability to fully express herself (like not being able to find the right words), numbness in feet or hands (from positions she was in), dizziness (caused by other medications), bad reactions to medication, withdrawal from medications, problem with the oxygen machine, i.e., meaning she was not getting enough oxygen, and also, yes, physical pain.

Keep in mind, I was instructed to give medications for all the issues above and was not told to investigate first. For example, when one hospice nurse was at the house and heard a moan, she directly instructed me to give medication, and I then needed to show her that it was, in fact, due to a need to go to the bathroom.

Had I followed hospice's advice, about 90% of the time I would have been issuing medications for things that had nothing to do with physical pain or disease progression, but were things that were easily solvable where medication was completely unnecessary.

Disease Progression

Hospice staff told us, "As the disease progresses, you will notice your mom sleeping more and eating and drinking less. We knew this to be true from other sources that we had read, but what we did not know was that the hospice staff were having us give medications that were causing her to sleep more, as well as eat and drink less. When we tracked her food intake and amount of sleep, we would notice the pattern and tell them. Instead of admitting that this trend may be caused by the medications -- and likely was -- they assured us that disease progression was the cause for these changes.

We discovered this sedative effect of the medications when the hospice doctor ordered a medication to help with my mom's dizziness. Normally, the hospice agency had medications delivered directly to the door. However, since they told us this medication was not covered by the hospice benefit for some reason, we were to pick it up at the local pharmacy. I decided to review the medications with the pharmacist who informed me that three of the medications she was already taking would cause drowsiness and this new medication would just make her sleep even more!

In fact, when we gave this new medication, she did sleep more, just like the pharmacist said. This also meant she ate and drank less. We decided to review all her medications and by simply moving the one that caused dizziness to the evening instead of the morning, we were able to relieve her dizziness and also we stopped some of the other medications that were making her sleep so much. The result was that she was more awake, alert, and interactive and then was able to eat and drink more.

This is just one example of how hospice staff always blamed disease progression for her increased sleeping rather than recognize that the medications were making her sleep. Why did they not tell us about the synergistic additive effect the medications had on sleep? Why did they leave us to figure out how to eliminate the dizziness by giving the medication for dizziness at night?

But that was not the only example, another time, hospice also blamed a bad allergic reaction to a new medication, gabapentin (Neurontin) on "disease progression. And then, on a third occasion we found them blaming a withdrawal symptom on disease progression. In all cases, hospice's solution was to issue more medications or increase dosage.

We were very suspicious of the hospice staff at this point. Yes, the amount of food and water she was taking in was decreasing slowly, but it seemed that the hospice staff's advice and support was speeding up the process - which was not what we had wanted, nor was it according to our mom's wishes.

Alternative Pain and Anxiety Relief

We were fortunate that we had hired outside caretakers to help care for our mom. They were instrumental in helping us on our mission to assure we were not overmedicating her. We were giving regular doses of medications that we found to be necessary in the quantities that were effective. Many times, those quantities were far less than were stated on the bottle. For example, we would give 1/2 hydrocodone 5 mg -325 mg pill ("Norco" or "Lortab") every 6-8 hours when the bottle's instructions stated we were to give it every 4 hours, and we would give 1/4 of a 1 mg Ativan pill every 6-8 hours when the doctor's order on the bottle said to give 1 mg every 12 hours. This seemed to work better for her.

We would follow the 15-20 min rule that I talked about earlier and wait and see if we could not solve the issue without medication. If not, we would then slightly increase the dosage given. Although sometimes we needed to figure out what was wrong and address that, at other times we found that alternative pain relief was faster and more effective than increasing medication doses.

For example, when we put my mom to bed in her new hospital bed -- which she hated -- she would get anxious. We had already given her Ativan and had tested increasing the dose, but these things were not helping. Instead, we tried a couple of other things that worked well. When she was anxious, we would show her pictures of her grandchildren or great grandchildren and tell her about them. This was very helpful and gave her almost immediate relief from her anxiety. Then we would give her foot or back massages, and most of the time within 5 minutes she would be asleep. This worked faster and better than the increased dosage of Ativan much of the time.

During the day, we found the same benefits from using methods that did not involve giving more medication. Back rubs, leg rubs, feet rubs and massage in general worked very well on her. Because sometimes her skin was dry and itchy and quite thin, we would use lotion to moisturize and soothe her skin and prevent her from scratching her skin open. We also used distraction by doing things like working crossword puzzles with her, showing her pictures, playing cards, and even arguing with her about getting a bath.

When we paid attention to her and did things with her, both her pain and anxiety levels were lower without the need for more medication. Hospice staff did not tell us about any of these things! When I told them what we were doing, they seemed quite surprised and I even felt I was somehow educating them - which shocked me. They did send over a massage therapist once every 2 weeks, but this was far less often than would have been useful for managing pain and anxiety.

Information Asymmetry and Pressure

One of the most sinister things I found about our hospice experience was the pressure to follow their advice - especially since their advice would have driven the course of my mom's death in a very different way than she wanted and caused her to die much sooner! When we chose hospice I did not understand that I would be placed in a hospice information and cultural "bubble" - without access to outside medical advice.

When a drug was ordered, we could not get a second opinion. When we were uncertain about how the disease was progressing, we were not allowed to do any testing. So, while hospice agency staff assume a very intimate role as the only guide we had through a very emotional process, it was the first time we had ever experienced any of this. If we got bad advice and followed it, we had to live with the consequences. Keep in mind that I informed the hospice staff about my mom's fears regarding the medications and her wish not to be medicated to death.

They would say things like, "From my experience, it is best to err on the side of comfort. You don't want your mom to be in pain! Do you?"

Of course, we did not want our mom to be in pain, but there was no need to say this to us except to intimidate us into giving more medications and have us feel guilty for waiting 15 minutes to try to find out if there was another cause for her facial expressions.

When I told one nurse about my 15 minute rule, she said, "Why would you want to leave her in pain for even 15 minutes?" As if my rule was only going to cause her pain! A pain that would be my fault! I felt horrible being made to choose between honoring my mom's wishes about not being overmedicated, and potentially causing her unnecessary pain. This was the type of pressure that wore on us at a time when this was the last thing we needed.

Another example: When my mom first came home, she showed a bit of anxiety and we were told: "Give her a whole 1 mg Ativan tablet." We were naive and simply followed the instruction. As a result, my mom was knocked out for 18 hours! While she was knocked out, it was strongly suggested to give morphine because she was showing facial expressions that they said indicated pain, and I needed to learn how to use morphine. In fact, they pushed morphine so much that I wondered if they owned stock in the company that produces it.

Thankfully, I was so angry about the Ativan — and not having been told what it might do to her — I refused. I told them that I would not give her morphine while she was in a drug-induced sleep and anyway, she looked like she was having a dream to me, and was not in pain.

I later discovered that Ativan pills might be very small, but can be cut into 4 pieces. We found that my mom really could only handle 1/4 of a 1 mg Ativan tablet every 6-8 hours - though from time to time we did increase it to 1/2 tablet when necessary. Why didn't hospice tell us we should use smaller amounts? As they were supposed to be our trusted advisors, and knowing that my mom feared to be drugged to death, I would have expected that they would have told me, but instead I had to learn it on my own.

Another example: When my mom had a bad reaction to a medication, I wanted to call 911 and have the ambulance take her to the hospital. They pushed me not to do that, but instead insisted that we wait for the nurse to come and just to give even more Ativan in the meantime.

They tried to assure me that the medication reaction was disease progression and not a drug reaction. When I pushed back, I was told, "You need to listen to people who have far more experience in this than you do!" I had to investigate on my own by going online to the National Institute of Health website to look up possible reactions to the drug she had just been given and then prove that she actually was having a bad reaction. Again, they were wrong.

Even after I was proven correct, I still felt pressure to avoid a hospital as they would need to take my mom off hospice to do this, and then I worried we would lose all of our home-care equipment which they supplied. I realize now that they push so hard not to allow people to take their loved one to a hospital because then they would lose the revenue from having my mom enrolled in their program. It was all about the money they get, not what was best for our mom!

The Emotional impacts of Being a Caretaker with Hospice Help

When I took the actions that I describe in this article - investigating pain and using alternative forms of pain management including massage - hospice folks recognized it and told me "She is not going to follow the book" when it comes to the timing of her death. I did not know there was a "book" for when people die, but so many folks have told me that experienced hospice nurses can tell within a few days when your loved one will die. There are signs of the active and pre-active phases of dying that can help family members recognize when their family members are getting closer to death. These are posted online at the Hospice Patients Alliance website at www.hospicepatients.org/hospic60.html

The hospice staff made it clear to me that giving pain medication at a quantity that may have the side effect of causing death is acceptable to them when a person is supposed to die. That made me worry.

Death comes when it is time, and that can be a long time or a short time. This means that you will feel internal pressure to get back to things like your career, your children, your regular schedule, etc. It is hard, and the hospice staff's bad advice can play on your need for some certainty around the process. You may feel pressured to "move things along" and have your loved one die sooner rather than naturally! It did have that effect on me.

I had to really be careful about my thoughts and feelings during this time. It is easy to give up hope, because the doctors had already told us that mom had a terminal illness and would die.

My mom had good days and bad days. During those bad days, I made it a point to always assume that mom was going to have an up day again. I made my mom prove me wrong rather than assuming each down day or days were the end. I ended up being right for 6 weeks longer than anyone believed was possible.

Yes, eventually, my mom died, but when that happened I was clear that she was dying naturally and not dying because of my own unconscious bias which might have led me to do anything differently that could have helped her die faster than was natural.

Through this month's long process, I needed to find ways to take care of so many things such as my career, family responsibilities, body, and so on. I needed to get help from others to care for my mom, as it would have been much harder -- even impossible to do alone. I had to make sure to take breaks, get exercise, and spend time with my family even if it was just an hour a day. I had to be very vigilant not to let the desire to get back to normal life subconsciously push me to accept the hospice staff's many "lines" about everything being disease progression and their justifications for increased medication levels that would result in her medically induced death!

I had to do my best to find ways to get by basic needs met and make sure my mom was cared for as naturally as possible. Especially, I had to be the keeper of hope for her and know that after she passed I will always be able to look myself in the mirror with special memories of caring for my mom at the most vulnerable part of her life, and at least then have a sense of pride for doing all I could do to assure she lived and died according to her wishes.

Note from Ron Panzer: The alternative methods C_____ and other family members employed to relieve pain and anxiety by providing massage and talking about memories and looking at pictures was and is standard practice at hospices that remain faithful to the original hospice mission. However, most hospices today are tainted by utilitarian secular bioethics and just don't truly care.

Many hospices today are like the one C_____ experienced: pushing medications and doing very little else to educate the family about how to serve in a wholistic way. Using music, massage, being with the patient, carefully assessing what the real needs are that have nothing to do with actual pain — these are all part of good, basic nursing and hospice care. It is tragic that most hospices are no longer providing and encouraging wholistic hospice services.

The hospice staff certainly know about these alternative methods but often don't bother to take the time to use them or educate the family members about them. Hopefully, you will be able to learn from C_____'s experience and protect your own loved ones!

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