Community Chat

[KingstonsMom]

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@K9buddy wrote:

I believe Hospice will administer pain meds through IVs.

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@K9buddy

I'm not sure if it's the same in hospices in all states, but my brother who was in a critical car accident (which I mentioned in an earlier post on this thread), ultimately did not survive his traumatic brain injuries and 6 months later was sent to a Hospice facility.

At the time of his arrival there, he was receiving nourishment from a feeding tube and pain meds via IV, but those were all removed, and they used only morphine 'patches' for pain. Nothing IV or IM.

When we questioned them re: the delivery method of pain meds (obviously by IV or IM would be stronger and a quicker relief), we were told that they only use 'non-invasive' pain relief methods and since he could not swallow, that only left the patches.

As I mentioned, this may not be how all hospices treat pain, but it was in my personal experience in my area.

[seaBreeze]

Oh Dori, my prayers are with you and your husband.   As a Hospice Volunteer, I empathize with this difficult situation that you must endure.   Hospice is for those patients whose life expectancy is 6 months or less.  

And if doctors affirm your husband is a candidate, please ask for 'volunteers' to come and relieve you ... as well as sit and read to your husband.... play soft music, write letters, and other comforting gestures.   May you find strength with the help of others who care.

[pitdakota]

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@Evie2004 wrote:

Dori, since you are with your family now, please ask their help in finding a hospice, preferably a not-for-profit one, to come & evaluate your husband THIS weekend..this should be done by an RN or LSW..hospices respond 24-7.

You do not HAVE to have a Dr for the referral..if the nurse or social worker feels he qualifies for hospice care, there will be a hospice medical director (Dr) who will admit him to the program, order meds & any equipment he may need for home hospice care.Please don't wait much longer for this evaluation visit. As soon as his needs are managed, you will be able to recouperate & be able to help care for him. I am sorry you are having to go through this, but it does sound like hospice care will be the answer to your prayers..take care.

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@Evie2004, Hospice does require a phyisican's order.  There is a difference between Hospice and palliative care facilities.

Here is a link to their website and the FAQs:

http://comforthospice.com/frequently-asked-questions/

From their website:

Q: How does a patient sign up for hospice?
A: A patient or family member can call the hospice office directly for more information. Admission to hospice requires a doctor’s order and an evaluation by a registered nurse. The evaluation can take place at the patient’s home, hospital, nursing home, or assisted living facility. All services and treatments would be coordinated with the patient’s own physician and the hospice medical director.

[geezerette]

@KingstonsMom

My father did receive IV pain medication while in hospice.  In fact, he was in such excruciating pain when he arrived there from the hospital that the first thing they did was to increase his pain medication.  No food, fluid or other medication was administered this way though.  This was many years ago.

@seaBreeze

Hospice made such an impression on my sister that after our father passed she became a "Twilight" singer.  Her small group goes to various nursing homes and hospices and sings quietly for anyone that wishes it for comfort.  She says it has greatly influenced how she looks at the end of life and gives her great peace.

[mistriTsquirrel]

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@Kachina624 wrote:

It is the patients doctor, who is familiar with his medical condition, who makes the referral to hospice.  There is of course the expectation that the patients condition is terminal.  It's hard to imagine this man has been seen by a doctor and something wasn't done to address his condition.  He certainlyly should be seen in some facility ER now on an emergency basis.   He could be seen at the nearest ER, then transfered if necessary but do it now. 

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@Kachina624

You'd be surprised.  My dad was suffering greatly, but was in such denial about his condition that we relied on his oncologists to make the call on when to involve hospice.  His primary oncologist made the decision to send his nurse practitioner over to the hospital early in the morning to tell my dad that hospice was his best option.  He neglected to inform my mother or I that he was going to do this.  So my mother got a call from my dad, crying, telling her that his doctors had given up on him.  The doctor waited until a week before my dad died to do this, and he didn't even bother to contact us so that one of us could be there with him when he was told.  I made my way to the hospital a.s.a.p., but we should've been given the option to be there with him when he was  told.  He was beside himself.  He still wanted to fight the cancer, even though the treatments were not working.  He felt betrayed by his doctors when they referred him to hospice.  That is why we as family members did not want to push for hospice, because we knew he would feel betrayed by whichever family member had brought it up.  We relied on his doctors to help us with that, and they didn't handle the situation correctly.

[pitdakota]

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@KingstonsMom wrote:

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@K9buddy wrote:

I believe Hospice will administer pain meds through IVs.

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@K9buddy

I'm not sure if it's the same in hospices in all states, but my brother who was in a critical car accident (which I mentioned in an earlier post on this thread), ultimately did not survive his traumatic brain injuries and 6 months later was sent to a Hospice facility.

At the time of his arrival there, he was receiving nourishment from a feeding tube and pain meds via IV, but those were all removed, and they used only morphine 'patches' for pain. Nothing IV or IM.

When we questioned them re: the delivery method of pain meds (obviously by IV or IM would be stronger and a quicker relief), we were told that they only use 'non-invasive' pain relief methods and since he could not swallow, that only left the patches.

As I mentioned, this may not be how all hospices treat pain, but it was in my personal experience in my area.

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@Hi @I,  that is correct.  If hospice care is selected through Hospice, IVs are discontinued.  Today, we have what we call subq sites that can be placed to administer pain meds.  Patients that are admitted to Hospice will have all IVs, feeding tubes and such removed.  Patients are kept comfortable but without these types of medical interventions. 

This is why it is so important for people to get the correct information when they are facing these situations or preferably before.  There are different options but people need to understand the differences between actively seeking treatment, Hospice, and palliative care.   

[pitdakota]

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@geezerette wrote:

@Ditzydori

First let me say how sorry I am that you and your family are suffering through this ordeal.  Just reading this thread brings tears to my eyes and a lump to my throat remembering my own situation with my father many years ago.  It's awful.

Second, I'm not going to offer any medical suggestions as you have already gotten some wonderful advice from many, especially the nurses that have responded that live on your area.

But what I am going to say is this:  I think you, your husband (you say he is still lucid at this point) and your children need to discuss what YOU want.  Do you want to continue treatments?  The hospital/doctor route would be your best bet.  Do you want to just allieviate pain and let nature take its course at this point?  Then hospice would probably work for you.  Or do you want something in between, like the suggested palliative care?

I know this is not what you want to even think about, let alone pursue, but it is the point you are at now.  Let your children help you with the details of calling various places, it will help relieve some of your stress.   Depending on the option you choose, some of these organizations not only help the patient, but also the loved ones.  It sounds like your husband now needs more help than you can give him alone and you are at your breaking point.

Again, I am so very sorry.

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What @geezerette says here.  ^^^^^^

@Ditzydori, this is excellent advice.  What actions you decide to take will depend on the outcome of those discussions.  And since your husband is coherent, he can tell you what he wants to do.  These decisions are up to you all along with input from his health care providers. 

If he wants to continue active treatment for his cancer then you really need to follow up with Sloan and possibly take him to a local ER if his pain is not controlled or he has so much difficulty swallowing he can't get meds or fluids down.

If you all opt for Hospice, there is no reason to go the ER.

However, if you want to find a palliative care provider going to an urgent care center or calling a social worker at the local hospital that has a palliative care unit would be a good option.

Bottom line though is to get the information from the professionals near you so that you know all the options and have accurate information to make the decision.

Sending good thoughts and prayers your way. 

[mistriTsquirrel]

I'm so sorry you're having to go through this, Emily.  Hugs to you and your family as you make your way through this.  

[MickD]

@Ditzydori If your husband is not eating and in pain, this is considered emergent.  Can you have him transported to a hospital so he can receive the proper care and assessment?

[goldensrbest]

My husband had visiting nurses, while he was home they set up IVs to hydrate him,help with meds ,and things, but i know alot of people sing the praises of hospice, but we wanted them to come to the house to help with his care,they would come for 1 hour a day,that was it, i needed more help with my husband,it was just me no family, in the end i had him to go to a rehabilitation hospital,where they had one part of it for dying people, hospice came to check on meds, talk to him,and myself ,i found that the nursing care is what really helped.