anyone uses full code hospice

DianeDP

Hello,

I just hope to hear anyone's experience of selecting full code hospice for elder dementia parents.

We have full code for my mom but the rehab did not implement. Very sad.

Thanks.

DP

Rescue mom

Apologies, I may be dense, but my mom was in and out of a few hospices over several years. I don’t know what “full code hospice” means (??). Now my DH has Alzheimer’s; this sounds like something that should be known about.

Quilting brings calm

Never having heard this term before, I did an internet search.  Here what I found: 

== What Is A Full-Code Hospice Patient? A full-code hospice patient is a patient who has indicated via advance directive or instruction to their provider that all resuscitative measures should be taken if their heartbeat or breathing stops.== ( bold was done on the place I copied from)

This seems counterintuitive to the spirit of hospice to me.  My understanding of hospice is that life saving measures were no longer part of the equation.  Instead treatment is mostly limited to making the patient comfortable and reducing their pain level.   Full code is not  something I would request if my loved  one was on hospice.  Even if hospice was being provided at a point when death was not anticipated for a while.  Which can apply to a dementia patient 

Having said that -  my choice is immaterial here - it’s very sad that the requested instructions  and choices were not honored. 

I apologize for the varied fonts.  I don’t know how to fix it 

DianeDP

Full code hospice patients: the providers should take all resuscitative measures if these patients heart beat or breathing stops.

This is opposite to DNR code. DNR is Do Not Resuscitate. 

We selected Full Code.

Thanks,

dayn2nite2

What's the point of hospice, then?  I don't get it.  Hospice is to allow a comfortable death, what kind of comfort can there be in CPR that breaks ribs, endless rounds of antibiotics to keep a body going when the mind left long ago?  Ventilators.  Emergency cardiac surgery.  Ugh.

If you want to do all that, why bother with hospice.  Hospice indicates you have accepted that your LO will die.  Maybe an acute event will happen, maybe it'll be a natural death.  You are not going to interfere in ways that make your LO suffer.

ButterflyWings

Hi Diane, 

Reading between the lines, it seems like you’ve recently lost a loved one and if so, you have my heartfelt sympathy on this loss. It is never easy, but especially if we have hopes of recovery or just don’t expect the turn of events at that moment. I have survived the sudden loss of beloved next of kin and it took my breath away.

That said, my answer to your question is no. We are camp DNR. Both him and me, should it come to that.  I hope my further sharing will not offend or be hurtful in any way. There is no judgement, only explaining my/our decision process. * I agree with Day2nite

The love and light of my life, DH, is also an elder, late stage Alzheimer’s and on in-home hospice. I feel as many do, that since AD is a terminal illness which devastates the PWD, stripping them of all capacity as it progresses to its ultimate end, then should circumstances or the universe intervene to take him sooner in a manner that causes less prolonged suffering it would not be the worst fate. 

I am currently starting to allow myself to try imagining life without my beloved. I can’t just yet. I’m not ready honestly, yet I need to brace myself because we are near the end of Stage 6 of 7 stages before AD shuts his body down. His mind is largely gone already. But I will provide the most comforting, pain-free measures to shelter him and protect him from harm for as long as he holds out.  That is where hospice comes in for us. Comfort care. DNR implied in my view when I called them in to evaluate him for hospice (end of life) care.

If he stops eating? No feeding tube. I don’t withhold his asthma meds and did the Heimlich to stop him from choking to death recently  — but if he stops breathing or heart stops beating? His wishes and mine are to let nature take its course. DNR. I  truly believe that to resuscitate (or attempt to bring him back) from a heart attack etc, would be cruel, pointless, and wrong as it can only prolong his suffering. Plus, an elderly LO could end up with cracked ribs and more, from CPR. Painful to heal and still dying if dementia. 

Here is an article that addresses this dilemma. Again, I am sorry for what you are going through. It feels so helpless I know. If I misunderstood your situation and question, my apologies. https://www.hmpgloballearningnetwork.com/site/altc/articles/assault-treatment-mythology-cpr-end-life-dementia-care

DianeDP

Hi ButterflyWings,

I read some of your posts and you have done work and helped a lot for your DH. I trust your words.

Your guess is right and I could PM more about our situation. 

Give a simple answer is when Dr suggested hospice, some of us were not fully ready. So we selected full code hospice as a transition.

As 25% of hospice dementia patients get live discharged from hospice in US based on medical studies, do we think there is a hope for advanced dementia patents, if rescued when an accident happen, to live longer?

Thanks again.

DianeDP

Hi Dayn2nite2,

Thanks for comment and see my response to another member.

Quilting brings calm

Diane -  I’m sure there is a chance that a dementia  patient can live longer if CPR is successful.  I also agree that some  families are calling in hospice for the extra services they provide while still wanting their loved one to be saved.  I also can understand that you requested full code and it sounds like your family got DNR.  That’s sad and very upsetting that the agency didn’t honor your wishes. It’s possible that hospice didn’t communicate to rehab if hospice personnel were not present at the time. 

Most family members in this forum have lived with their loved ones decline for several years by the time they are bad enough to be eligible for hospice.  There are recent posts  detailing the condition their dementia patient had to be in to qualify.   Most of us feel that our loved one is gone at that point, their brain is destroyed, and their body is almost as bad.  We know they aren’t going to improve and will just continue to decline.  Even if they get released from hospice. We just don’t want to do anything to prolong their suffering.  On top of that, many caregivers are  financially, emotionally, and physically damaged to the point that they aren’t sure how long they themselves will survive once their loved one passes.   Their relationships with other family members who did not help caregive is also often destroyed  

You will become familiar with the  posters here over time and their reasons for DNR will become apparent and understandable  

Your situation may be different and  your family had a right to make your choice and expect it to be honored. I am sorry for your loss. 

DianeDP

Hi Terri,

Thanks so much for your post.

As my mom (90) just had 7 months of vascular dementia (and 7 days in hospice care), I just feel it is hard to take it. I plan to read more posts. 

ButterflyWings

DianeDP wrote:

...when Dr suggested hospice, some of us were not fully ready. So we selected full code hospice as a transition.

As 25% of hospice dementia patients get live discharged from hospice in US based on medical studies, do we think there is a hope for advanced dementia patents, if rescued when an accident happen, to live longer?

Thank you Dear Diane for your kind words. I am humbled and honored to have your trust. The present and past members have helped me so much during our journey thus far. This is where I learned everything that I know about dementia caregiving. Just paying it forward, as well as reflecting on, and sharing our own personal experiences with AD.

My heart hurts for you right now. Moms are special and it is an irreplaceable void when they leave. Makes it really hard to see any possible silver lining in the trauma of her passing I would guess...especially with what you shared about not being fully ready when you all chose hospice. I'm so sorry. You must be in shock. I was, when my LO was literally there one minute, then gone the next. I think we can never be prepared though, even when there is a terminal disease involved which dementia certainly is. The most cruel one I believe, due to the devastating decline is causes til the bitter end. Several members here have been sharing about their mom's passing recently. It just hurts. Even though death is part of life, and one of the few things we all have in common. Sending you virtual hugs at this sad time and wishes for healing in time.

Two thoughts on what you've raised: 

 1. I don't know her age at the time of rehab, why she was in rehab, when your LO was diagnosed, who was caring for her, or why the Dr suggested hospice. It sounds like they felt your DM was likely facing end of life sooner rather than later and that is what hospice teams help us through with the most dignity and comfort of our LO driving decisions at that point. Had she ever shared any Living Will or Advance Directive instructions prior to dementia?

2. To answer your question about how I would interpret those statistics for US hospice patients being "graduated" off hospice - several of us were recently posting about this. It is deceptive. They haven't recovered from the disease that is stealing their brains, bodies and quality of life every day.  Their prognosis for "living" any period of time post-hospice does not take into account the constant deterioration that is dementia. It is a false hope, to publish stats like that unless you were given the context that quality of life with the person as we knew them, isn't an option. The downward spiral continues. They just aren't "actively dying" in the next few weeks or days. So hospice releases them due to insurance criteria.

Many times with dementia especially, hospice patients are decertified due to rigid criteria that don't take dementia realities into account. So, the 25% may be post-hospice but it doesn't mean they have "improved" or have "healthy prognosis" or "good quality of life" at all. I think those stats are misleading. In a huge way. It also is unfair to PWDs and families who genuinely need the additional hospice team support and comfort meds + equipment to keep their declining LOs safe and as comfortable as possible while they slip and slide away.  Just because they are not actively dying in a 6 mos timeframe does not mean they have relationships and quality of life. 

So, I hope my disorganized thoughts are expressed in a way that makes a little sense. Just being "alive" does not equal "living" you know? Dementia puts a very sharp point on that thought.  Quality of life is non-existent for my DH and has been easily since Stage 4-5 when he was a loose cannon and not even aware of what he was doing or saying. Now, at 6d he can do none of the things that he loved and lived for. He doesn't really know who or where he is. If he knew what his existence has been reduced to, he would not want to still be here taking up space and resources. I know that for a fact. It is part of why I freaked out a couple of weeks ago after realizing I instinctively saved him from choking to death. (He'd probably be P.O'd if he knew. Laughing to keep from crying. There is nothing easy about this disease or trying to support our loved ones' safe passage through it.) 

My personal opinion is that the hospice criteria needs to be updated, especially since the sheer number of dementia sufferers is increasing and we are not handling it like the devastating terminal illness that it is, especially in late stages. Every day is a new struggle. So prolonging it artificially or with an intervention (full code) to reverse what is happening (death)...is not something I would do. I think the article I attached earlier says it best though: 

• whatever the event that causes heart failure or breathing to stop, CPR is a physically traumatic assault on the body and very unlikely to succeed at all. So to put someone who is dying of dementia, through that - especially if elderly and likely frail (broken ribs to be expected) - is like torturing them. 
• Even worse they can't understand what's going on nor express their own wishes at that point. I would not want that for my own mother or other LO. I would honestly just let them die in relative peace though it is so hard to let go. That is what I will be doing with DH when the time comes. However and whenever it happens.

I pray that your loved one will rest in perfect peace, knowing how much she is loved and missed. And that you will feel less betrayed if that is the right word, by having your expectations not be met -- with such a devastating outcome. It is likely though that even with all extreme measures, she may not have survived the event. Or if she did initially, a PWD with hospital delirium, aftermath of additional anesthesia, surgeries, possible trauma from the medical interventions day2nite2 mentioned...would most certainly decline so much more quickly from all that. 

This is all just my opinion and reflection having lost a LO suddenly without the ability to advocate for any life-saving interventions. Hindsight has changed how I felt years ago when that first happened. I fear you and your family may later have regretted such extraordinary measures truly. It is possible this was the kindest way for her to be released from this horrendous disease, though it will always feel that she is gone too soon. (My DH is gone too soon for sure. Though he is sitting right here beside me. That's dementia though.)

OK, it is time for me to stop rambling. Your questions made me think through some things that are just around the corner for us too. Maybe even sooner than later. Praying for your peace of mind, and time to grieve with no guilt. You did the best that you could and the rest is just not in our hands. Holding you in our hearts.

ButterflyWings

Diane, 

I am editing a very long reply I posted and then saw your reply to QBC which answered some of the things I had included. We are holding you in our hearts. 

I do know that Vascular Dementia can have major, sudden declines, so even if you gained a few more months for example...especially if that was dominated by attempting to heal from injuries (and possible surgeries?) and trauma caused by a full code... I fear your dear mom's functioning would certainly have been significantly impaired and her quality of life, mental state post meds and anesthesia, plus pain and so many other things...just is not reflective of "living" even if graduated off of hospice. The stats and their meaning are really misleading in reality. They satisfy an insurance criterion that just means not actively dying in the next few weeks/months. But living with dementia is very different from living with a different terminal disease that attacks the body but leaves the mind intact. It makes all the difference in the world. And I believe the hospice guidelines need to be updated to address dementia realities which are very, very different from other terminal diseases.

As hard as it is to not have your expectations and requests met, the article I posted earlier speaks to when some medical professionals are really torn between following the family's request for a full code versus their oath to "do no harm" when they can see that forceful CPR (and certainly any significantly more invasive procedures) would leave the patient more compromised than before (or they may not survive the attempted intervention) -- especially if elderly PWDs who have limited time and quality of life anyway, given their terminal disease that wreaks havoc in every aspect of their physical, mental, and emotional existence. 

I am humbled and honored by your warm words and to have your trust. Everything I have learned about dementia caregiving came from these boards -- just paying it forward -- and sharing my own personal trial-and-error experiences and reflections from walking with my DH through this minefield. And offering my opinion, which may not match others' of course. It is the beauty of this forum. So many different perspectives, experiences, and caring forum mates.

May your dear mom rest in perfect peace, and may you and your family also find peace in time. It is so hard to let them go, no matter the circumstances. I will tell you that if something takes my beloved husband before he rides AD to the bitter end, he will have dodged a bullet.  I mean that from the bottom of my heart though I will miss him bitterly. No one should have to suffer an extra day of dementia. It is horrible. I pray for a cure for future generations.

Peace be with you. 

DianeDP

Hi ButterflyWings,

Thanks again. It will take some time for me to think thru it. 

Take care and will talk to you later.

Battlebuddy

Dear Diana, 

   I am sorry for your loss of your mom. Loosing a beloved mom is a very hard traumatic thing. I remember when my mom passed. I wasn’t sure if I would survive it. She was an elderly woman similar to your mom and had grown frail and skinny , but I still saw her as the strong giant that she was. 

  Dementia is something that drags on for years and years with many indignities and losses to the person and their families. My father in law had Vascular Dementia after multiple strokes for 10 years so I know of what I speak. I also had a beloved sister pass suddenly of a heart attack last year. Whether one passes fast or slow it’s always an adjustment. 

    I think Hospice was invented to come along side us at these difficult times , providing all kinds of support for our love ones and us. They are in the business of providing great comfort and peace to our loved ones. 

   I applaud you for having her on Hospice , especially if there were differences of opinion. I don’t think people end up there unless they should be there. So you can rest assured that she was given all manner of comfort and support through Hospice. 

   But The Hospice mission is to provide a safe comfortable passing. And that usually does not include Coding someone. I agree with Butterfly Wings. Coding a Hospice patient would produce broken ribs and suffering.  I’ve never heard of a Hospice patient being coded. A frail 90 year old would end up with broken bones from the experience. 

   I think in many ways your moms passing was the best you could hope for. Her Dementia experience was short and her passing was quick. I wished that for my husband, but we have been on this journey 6 years. My husband has a living will so I don’t have to worry about what to do at the end- I will just follow his wishes. I see the purpose of a Living Will and it’s importance now.

   I wish you Peace. I hope in time you see that your mom was spared all kinds of suffering , even if you are suffering now from the suddenness and shock.  

   

[Deleted User]

The user and all related content has been deleted.

terei

I am probably not the best person to comment on this, since I have very strong views on end of life issues.

I am amazed you found a hospice that offered you ‘ full code hospice’.  The very reason for having them come in is because your LO is likely within 6 months of a natural death + prolonging life is not their purpose.   The reason for hospice is to make the last part of life comfortable as possible for the patient + family without medical intervention except to relieve discomfort or pain.

Please do some reading about the outcomes of CPR for the elderly(let alone with dementia). Even CPR in a hospital setting has very very little likelihood of the patient recovering to baseline. There are many many studies out there that show, for the elderly, CPR is not a good way of extending (quality) life.  Not to mention the common consequences: broken ribs, ventilator requirements, pneumonia + a prolonged miserable death. 

I would also encourage you to read ‘Being Mortal’ for some insight into coming to terms with death as a part of life + the choices we will all have to make for ourselves or LOs to have deaths without pain + with as much dignity + grace as is possible 

NuttyProfessor

Full code hospice is a contradiction in terms.

The whole idea of hospice is to minimize medical intervention, which must be understood to be a double edged sword.    My father had cerebral amyloid angiopathy, which caused brain hemorrhage after brain hemorrhage.  We lost him a piece at a time, and for the last 2 years of his life he was bedbound, cortically blind, nonverbal, and similar to a late stage dementia.  My mother took care of him tirelessly, with a hospital bed in the living room complete with Hoyer lift.   She used aides for short shifts twice a day, only to help lift and clean/change him.   We got him onto hospice and even though my mother had her "please save him!" moments, we were all very grateful that we went that route.   "Full code" and hospitalizations whenever he had a new (presumed) bleed would only have been more agony for both him and my mother, and would ultimately have not prolonged his life in any meaningful way.   Living in their comfortable home of 50+ years, as opposed to spending weeks or months in a high tech medical environment, hemmed in by JCAHO and hospital rules.  Like, ambulance transport, hours in the emergency room, life in an ICU with beeping machines and tubes everywhere instead of in the comfort of home, hospital rules about visitors, total lack of privacy, and from my father's viewpoint, inflicted pain with no understanding of the reasons for it. Also, when someone is old and frail who requires cardiac rescuscitation, CPR is likely to break ribs and almost never achieves any meaningful recovery, unless initiated and successful in less than 5 minutes, because CPR can't actually maintain enough oxygenation to protect the brain.  Similarly, once someone who is old and frail is on a ventilator, the chances are very low they will ever come off, even if it's due to something theoretically treatable like an aspiration pneumonia.

I really believe if the medical community was better at educating patients and families  on what "full code" and "do everything you can" really means, more people would be making different decisions.   Unfortunately, there is too much incentive for the hospital staff to encourage full code and full care because that's how they make their money.  Even though most of the same staff would privately not elect any such thing for their own family.

Olly_Bake

I didn’t know full code existed with hospice so just learned something. I’ve only been asked if we wanted DNR. I've always did DNR but this time with regular home health I didn't when asked. I'm nervous about using DNR again because for example; if he takes his oxygen off and it drops low I wish for you to put his oxygen mask on unless he is being very resist and see if the number goes up. Of course, I want you to give him his other breathing treatments. But if you get to him and he is not breathing at all, don’t beat in his chest.

Recently my LO stopped eating and I was asked to consider a feeding tube. Reading here many thought it was a hard no so we decided to offer soft foods instead. If accepted fine but if not I’d had to be okay. Thankfully he started accepting the soft foods and moved on to real food again.

If he has a heart attack, we will see what happens and same for a stroke.

If his broken hip could have healed naturally and not caused excruciating pain, I would have skipped surgery.

If they think he has pneumonia, I would like to treat or make an attempt for comfort.

If he has a UTI, of course I would like to try and treat or make an attempt for comfort.

For his prostate cancer, the only thing I agreed to in the past was the hormone pill if his cancer changed. But now, that would depend on overall mental and physical health but leaning toward no now since the fall.

Does anyone think, the full code, could have been part of the pallative part of hospice care rather than straight up hospice? Just wondering because the hospice company last week told me if they picked my LO up again and I took him off for any reason, they would not take him back ever. So don't think they would offer anything such.

Stuck in the middle

I didn't use full code.  Mom's doctor (a geriatrics specialist) described the traumatic nature of it and said he wouldn't want his mother treated that way.  I took his advice.

mommyandme (m&m)

I’m so sorry you lost your mother suddenly and unexpectedly.  

This dumb disease is so hard to navigate. I’m caring for my 85 year old mother who has hospice too.  We are on the DNR team. I don’t want my mom to live just to die from this. I’d much rather her go comfortably from something else sooner than the end of dementia.  Although the end is going to be heart breaking no matter what eventually takes her.  I know you are heart broken and devastated, probably feel violated and might be angry.  I also believe that somehow this is a blessing for your mom. I hope you can find some peace and comfort soon for you and yours and Im so sorry!  

Rescue mom

I was having a really hard time getting my head around the answer/concept…hospice doing this is hard for me to grasp.

Diane, I am so sorry for your loss. Now I see it happened fast (relatively); I hope you can find some peace and comfort to help you through this time.

Many of us here have had years to learn about this disease; we’ve learned, seen and had more time to “process” how painful and awful it often goes. You didn’t get that. I know you are grieving, and the end is always a sad, grief-filled time. But I would not wish anyone to go through a LOs long dementia process.

My mom had vascular dementia, and was in and out of hospices depending on her physical problems. Her hospices *only* treated the physical issues, like mobility and weight loss (until the very end). They did not treat, or deal with, the dementia/behavior problems. And yes, they are often two different things. Their bodies can be (relatively) healthy, but the mind is gone b/c dementia.

 Her cognitive abilities could be stable for a while, maybe a few months, then she’d have a deep dive down. Then stable for a while, then down. For several years. She did not want to live like she was the last couple years, and had DNR (and other orders) in place. But her body outlasted her mind, despite her wishes.

There’s a broader issue here about how different hospices can have different policies. I ran into a local hospice exec this weekend, and asked him about “full code hospice.”  He had very strong feelings about it, said it’s opposite many hospices’ core philosophy, and not done around here. But it’s done by some.

it’s obviously something that exists now, and is another issue to consider even with hospices.

DianeDP

I appreciate everyone’s comments here. 

Just wondering if Hands-only CPR would be a good option? See link 

https://www.beaconortho.com/blog/hand-only-cpr/

Yes, my heart is broken and I hope to find a better answer for other similar people. 

Stuck in the middle

Stuck in the middle wrote:

I didn't use full code.  Mom's doctor (a geriatrics specialist) described the traumatic nature of it and said he wouldn't want his mother treated that way.  I took his advice.

Specifically, the doctor spoke of pounding on my frail little mother's chest with his fists with all his strength, breaking her ribs.  We didn't even talk of intubation and mechanical ventilators.

Mint

Interesting discussion.  Where I worked you had to become a full DNR before hospice would accept you.  You could rescind your DNR.  Sometimes this was done in order to do a procedure for comfort.  Then they would reinstate DNR after procedure complete.  I understood the need sometimes, which was rare.   Didn’t realize that some hospice programs function differently.    Will say this, where I worked the last few years they started allowing families to come into room when patient being coded if they chose to, including ER.  Codes started being a lot shorter.  Was also informative for family member.  They knew exactly what went on, they didn’t have to wonder or be mislead by someone liking to talk drama.  The doctor didn’t have to go out and fill them in, they were fully informed in real time.   Something I thought I might not like turned out to work pretty good at helping people to understand what was occurring.  Hard to understand if you don’t have a visual concept of reality, your mind can come up with all kinds of things like blaming yourself, wondering if you made right decision.  Think this clarified a lot for family.