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Dying Guide: Why I Hate Hospice Care

Mighty Mom is a keen observer of life. She shares her personal experiences and opinions in helpful and often amusing ways.

Die young and leave a beautiful corpse? Or hang in til you reach a ripe, old age so people can say, "He had a good life."? Clock out suddenly with no notice? Or wither away slowly over weeks, months or even years? There are pros and cons to each scenario. But one thing's for certain: we may not know when, where, or how, but we're all going to die.

why-i-hate-hospice

My Role Models Have So Far Been Positive

Both of my parents are now dead. Mom (God bless her) died on my one year wedding anniversary in 2005. A lifelong smoker, she had COPD. That is what finally did her in. She was 2 months shy of her 81st birthday and said she was shocked to make it to 80.

Mom suffered with her lungs and related issues (swollen ankles) for years. But she wasn't "dying" per se. In the end, it was a mere 18 days from hospitalization to check out.

The way we knew it was serious was Dad carried a portfolio of important papers -- including her Do Not Rescusitate (DNR) with him at all times. He told us he and Mom had been having some serious discussions.

He was prepared. She was prepared. At the exact moment of her death my Dad was in church praying for God to take her.

Dad's Last Wishes Mostly Granted

My Dad outlived Mom by 3.5 years. He was hale and hearty up until September. Then he went downhill fast.

Prior to his final hospital stay he'd had quite a few others. As a result, he'd become quite a favorite of the hospital chaplain, a lovely red-headed woman named Suzanne (who, we speculated, might be an ex-nun). Suzanne seemed to always time her visits when I was there. I don't think either my brother or sister ever met her. But I had the pleasure of many prayer sessions with her.

I also had the opportunity to discuss death in a philosphical way with my dad. He had a strong faith and was not afraid to die. Why should he be? His life partner was waiting for him, as were his loving parents.

 

 Weeks before he died, Dad spent a lot of time at his desk. He made sure all his affairs were in order. He did all the things they say happen to people preparing for the transition from body to spirit.

He stopped eating. He spent more and more time thinking/living in the past. He rejected medical help. We felt him pulling away from us little by little.

For me, because I knew his wishes, this was less painful than it was for my siblings. Of course I didn't want him to leave us. But I also knew the reason he was hanging around was not for himself. It was selfish to want to keep him around when his body was failing organ by organ.

In the end, Dad's final countdown was blessedly short as well. Back into the hospital on a Sunday. Moved to a rehab hospital* on Thursday. Taken to the ER the following Saturday, where he died early Sunday morning, surrounded by his family.

*A quick note about rehab hospitals. I am convinced there is only one way out of these facililties. And it's not standing up.

A Long Slow Death Sucks for Everyone

A mere two months after we buried my dad, it came time for my father-in-law. We put him under the care of the big "H." My FIL received what they call "palliative care" -- meaning intended to make the patient comfortable, not reverse a condition.

He was officially "in hospice."

According to the physician's order that hunh on his kitchen whiteboard, his terminal condition was"end-stage lymphoma." No one could or would give us an exact timeframe, but it was his doctor's idea to get hospice involved.

Typically that means the patient is expected to live less than 6 months. However, it's possible fo hospice to go much longer. I have heard of patients being on hospice for 4 years. I have heard of patients being on hospice, then having a resurgence and being "kicked off" hospice. Actually, that doesn't sound bad, does it?

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In my father-in-law's case the family owed to not allow him to go into the hospital. No matter what. His last hospitalization (surgery on the lymphoma -- before two rounds of chemo and radiation) was a disaster. He tore at his IVs and yelled for his shoes, over and over and over and over and over.

You see, my father-in-law also suffered from Alzheimers. This is sort of a double whammy medically, but in a way, also a blessing. He did not seem to understand what was happening, either within his body or around him. Due to his Alzheimers, expressed his his pain and symptoms verbally at the level of a three year old.

How to tell when Death is nearing

  • Dying: A Guide to Crossing Death's Doorstep
    This hub offers a breath-by-breath-to-last-breath guide to help you recognize and participate in each stage of your loved one's last weeks, days, hours and minutes of life. Like fingerprints, each person's exit from this earth is unique and highly...

Watching the Signs Approach

Each day he withdew a little more from life. He started spending more time in bed. He lost the ability to eat solid food because the lymphoma closed up his esophagus. As a result, he lost at least 25 lbs. This was not 25 lbs. my lean, lanky FIL could afford to lose.

Meanwhile, all we could do was sit by and watch helplessly as he slipped away day by day, pound by pound. Itellectually, knew and accepted that he wouldn't be getting better. We did our homework and read up on the dying experience. We were well (keenly) aware of the subtle changes and what they mean.

The hospice nurses came once a day to do a quick checkup. About the only comfort they offered (us) was to up his dose of morphine when he was having breakthrough pain. At the end he was on enough morphine and Fentanyl (delivered via patch) to kill a horse.

I Don't Know How To Let Go

  • Hospice
    Hospice Services, Make a Donation, Find a Local Hospice, Frequently Asked Questions, The Hospice Concept, What Questions Should I Ask About Hospice Care.

Hospice Take II -- The Final Parent

I originally wrote this hub in 2009 when my FIL went through hospice. It is now 2012 and I am updating it with our latest hospice experience. It is familiar, but this time quite different.

This time it is my mother-in-law (MIL) who is under hospice care. She outlived her husband by 3 years and is now 90.5. Here is what has transpired with her and how/when we knew it was time to bring in the "H" team.


  • Hospice Foundation of America
    Hospice Foundation of America is a not-for-profit organization that provides leadership in the development and application of hospice and its philosophy of care. Through programs of professional development, research, public education and information

This may sound bizarre to you. If we hadn't lived through the last 3 years and a horrendous legal battle for my MIL's right to die in her own home, with dignity, it would sound strange to me, too. But it makes perfect sense, considering.

We put my mother-in-law in hospice to protect ourselves. Of course you can't just enter hospice without a valid medical reason. A doctor needs to sign off that the person's lifespan is medically limited. In this case, medical necessity and legal necessity coincided.

My MIL had been strong and spirited (and stubborn). On Christmas Eve she was here opening gifts and singing carols. She showed no signs of imminent death. But something changed. The change was subtle at first, then undeniable.

By mid-February she looked different. She started exhibiting the classic withdrawal symptoms. She napped morning and afternoon. When up, she was in respiratory distress. Her confusion (dementia but not Alzheimers), increased.

Simultaneously, we were in a legal battle trying to keep her out of a nursing home. I won't get into the details of that crazy story here. If you are interested, read some of my other hubs.

Putting my MIL under official hospice care put all of "them" on notice that we have no intention of "placing" her anywhere. She is not to be moved. She will stay right where she is and die in her own home, preferably her own bed.

As to hospice itself, we are working with a different provider this time. Their care is more full-service and less focused solely on palliative care. Here are some of the services hospice has provided for us this time around:

1. Pain medication. Ttwo levels of pain control. As time has passed we have moved from Vicodin to liquid morphine.

2. Emergency medicine kit.They want us to be medically prepared for any emergency. If MIL starts exhibiting new symptoms in the midde of the night, we will be ready. So far we have used the Haldol (there for agitation) but not (yet) the meds for seizures, congestion (gurgly, rattly chest) or suppository for spiking temperature. I say these are yets, because each day brings significant changes.

3. A commode. MIL does not like it next to her bed, but it is now over her toilet. The raised platform and arms make it really helpful as her motor functions decline and she needs help getting onto and off the commode.

4. A bright neon pink sign that is for ETs. In the event that someone should come to the house and not be dialed into the "we don't call 911 we call Hospice instead" plan, this sign alerts the emergency personnel that she is NOT to be taken to the hospital under ANY circumstances. We have been assured by the H nurses that no matter what happens -- even if she falls (the biggest fear for all old people) our hospice team has it handled. Ok. We believe them!

5. Other items they plan to provide but have not yet: Oxygen, disabled parking plackard, gloves for our 24-hour caregivers to use, adult diapers.

5. Forms to apply for reduced rates on her utilities. (electric and gas = two different utility companies where we live). I've been told it can take 2-3 billing cycles for the discount to kick in. Something tells me MIL will kick the bucket before that occurs, but it's a nice gesture.

Final Comments on Hospice

Living with terminal illness is like living under a boulder. There's a steady, crushing ache that only death can abate. At the same time, the family is also suffering from the terminal illness. We are painfully aware that we should be feeling grateful for each day we still have our loved one here with us.

We don't want to rush things by getting ahead of ourselves. The signals that death is approaching are not universal or tightly scheduled. They are guidelines only.

Everyone handles the transition in their own way, in their own time.

The hospice workers are there as much for the family as for the patient. They know what's coming -- as do we. But they cannot say when it will occur. They are not omnicient -- nor are we.

Hospice is truly a family condition. We all have one foot in life, but one foot already in the funeral planning, if not the grave.

Having been through this parents dying gig three times, I feel like I'm pretty in tune with what's happening here. As stated earlier, intellectually I know what's happening. Spiritually, I pray for acceptance of God's will. He will take MIL when He is ready and she is ready. And not a minute before.

Yes, it's painful watching someone become trapped inside their elderly, failing body. It is a very helpless feeling. I know I can't stop it. But on some very infantile level, I think I expect the hospice team to something -- anything -- to make it better.

Of course, they cannot. It's not their fault. But they do make a convenient scapegoat for all the negative feelings impending death brings up.

So that's why I hate hospice.

Comments

Susan Reid (author) from Where Left is Right, CA on February 18, 2015:

Patt,

What a lovely comment. I'm so glad you stopped by and shared experience as a hospice nurse.

Keep up the important work that helps so many.

MM

patti on February 18, 2015:

I am so glad you had a diffrrent experience the second time. So many peoa hear the word "hospice" and immediately get a bad taste in their mouth. When in fact, hospice is simply a different kind of care.

As a hospice nurse, i can tell you...we fall in love with our patients and the families. And want nothing but comfort for them both.

Susan Reid (author) from Where Left is Right, CA on February 01, 2014:

Dear Sad Step Daughter,

Your story is a beautiful tribute to family love. Thank you so much for sharing this bittersweet day with all of us.

Even in the horror and helplessness of watching your Dad being starved to death, you and your husband got to experience true grace with him. Praying together - so beautiful. I remember praying with my dad and the hospital chaplain during his several visits in his final year on earth. Peace in the middle of heartbreak.

You know you did your best and your heart is clear. Your sister, on the other hand --- there is a special place in hell for daughters like her (like my husband's sister).

As a cat lover, too, your compassion for Dad's kitten really touched me. I am so glad you got to honor Dad's wishes and bury kitty's ashes with him.

I wish I could tell you how to prevent people from being starved to death in hospitals. That sounds cruel and immoral to me.

I don't know what kind of Advanced Medical Directive your father or the other person had in place. Possibly none, which is

why your sister the nurse got to make the decisions she felt were best. Somewhere along the line she got control of his medical decisions along with, it sounds like, his money.

How can you make sure this doesn't happen to you when you get older?

Don't let anyone be in charge of your medical decisions that you don't trust completely to carry out exactly what you would want.

I wish I could tell you that's a guarantee.

But please don't even think about that today.

Today is about honoring your dad and putting him to rest.

God bless.

MM

Sad Step Daughter on February 01, 2014:

Today we bury my Dad. During the time he was in palative care at our local hospital, my sister was in charge. She is a nurse and also had previously had everything this man had made over to her. He was so very upset with her at the end. Then as if this was not enough, she had my husband and me barred away from seeing him even though we had done no wrong. He was so angry about this. We began to have to sneak into the hospital to see him. During these visits, we prayed together, we

talked to each other, we learned he loved us very much and he told us he would never and I mean he stressed never claim my sister as a daughter of his. He asked my husband to sing and play the two songs he chose for his funeral which we plan on doing today. I watched as they starved my Dad to death at the hospital with no IV's at all. This was the hardest thing I had to watch in my life. Before we was barred we were taking food into the hospital and feeding him. He knew he was dying and he

told us he was saved. He held hands with us and he began the prayer

himself. My husband and I were caring for Dad's favorite kitty. The kitty was almost 18 and had come down with severe tumor on his face the size of a golf ball. The tumor had broke open and was running. We made the

kitty a wonderful life with us. As my Dad got close to dying I asked him

if he would like to have his kitty buried with him and he said yes.

Very hard on us, but the night Dad died, we made an appointment and had the kitty put down and cremated and remains put with Dad.

The veterinarian said the cat was in better shape for his age and cancer

than any cat she had ever seen in her practice. We padded his carrier with four soft pads, we gave him a favorite last meal, we asked the veterinarian to be careful of the one leg that she had operated on eight years ago when he was injured at Mom and Dad's. She said she would use a different leg. She said with his age and where the growth was and the size of the growth, if we would have tried to save him, he would maybe not make it through the sleeping meds and also she said he would

probably be paralyzed in his facial area which would make it nearly impossible to eat food. We all felt it was time. The kittys ashes are in

the casket with Dad now.

I want people to know it is just plain WRONG to STARVE a patient in the hospital with no IV. I watched it with two people now that I loved.

And I want to know what can I do to make sure this doesn't happen to me when I get older?

Susan Reid (author) from Where Left is Right, CA on June 21, 2013:

Hi Pam,

I'm so sorry I did not see your post sooner. Have not been paying attention to my hub comments.

I know (obviously) what it is to be seeing a parent struggling and at the end of life. It's so hard to see our loved ones suffer.

You don't say what reason hospice has given for taking your dad off. They must now feel he is NOT within 6 months of death (?). For the record, hospice did the same thing with my mother-in-law.

They told me they were going to kick her off hospice. I was in shock! Throughout, hospice kept

saying she was strong because her "vitals" were good. Meanwhile, we were watching her obvious leave-taking of this earth. She followed ALL of the signs.

We complained bloody hell to the hospice manager and they kept her on.

She died 3 weeks later.

Anyway, I wish you strength as you go through this very important time with your dad.

I will be praying that God does not allow him to suffer. MM

Pam on June 16, 2013:

I was so grateful when hospice stepped in for my dad. Now they are kicking him off of it tomorrow. I don't know what to do. He has COPD and dementia, I pray that the good Lord takes him home. But he continues to plug away. God Bless you.

Susan Reid (author) from Where Left is Right, CA on May 29, 2013:

Hello gfb14,

First, I'm so sorry for the loss of your mother. It's incredibly painful to lose our parents. Made unbearable when we feel they were abused by "professionals" while helpless. I'm so sorry you had

that experience with hospice.

They do seem to have a "mold" they fit the patient into, rather than accommodating what the patient really needs.