Community Chat

[feline groovy]

Sending you and yours prayers of strength; hang in there....

[LTT1]

@Ditzydori

Call 911 get an ambulance and go

the hospital takes care of the rest, at this point

Our DBIL just went thru all of this

[Emmiemorgan]

Emily,

i responded to your first post, encouraging you to pursue Hospice care for your spouse.  I am a Hospice RN, and many posters have given you sound advice.  If you husband is in pain, or suffering in any manner, he needs to be evaluated at a hospital now by calling 911.  Once at the hospital, he will have a case manager, likely a social worker or a registered nurse, who will manage his hospital stay and discharge.  That case manager can make a Hospice referral before he is discharged.  I evaluate patients in the hospital as well as in the home setting.  If he has a terminal diagnosis, with a physician stating he has a prognosis of 6 months or less, and is not interested in seeking active treatment (chemotherapy, radiation, IV fluids, pet scans, etc) he will meet criteria for Hospice.  This service is covered by Medicare Medicaid and private insurances as well.  

You may also directly contact a Hospice in your area and ask for an evaluation.  Hospice is staffed 24/7. You can speak to an RN day or night, weekends, holidays.  They will ask you for some info, your husbands primary care physician, his age, diagnosis, insurance.

You may also contact your husbands general practitioner for a Hospice referral.  I would bypass the oncologist, unless he has already directly made the Hospice referall.  Once patients stop active treatment and Hospice steps in, they usually step out.  Occasionally an oncologist will be an attending physician for our patients.  More often it is the GP.  All Hospice programs have their own Medical Director.  They often work as consultants with patients primary physicians, usually for symptom management issues.  

I hope this helps.  I am sending you and your husband peaceful and positive thoughts..

[Cakers3]

@Ditzydori  I am sorry.  May you and your DH be surrounded in comforting light during this time.

[Teddie]

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@mistriTsquirrel wrote:

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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.

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@mistriTsquirrel  That is disgusting and disgraceful how that was handled with your dad.  He and your family shouldn't have had to go through that. It made me sad to read that and I'm sorry for you all. 

[NYC Susan]

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@Ditzydori wrote:

NYC SUSAN, hubby has been a patient of Sloan for 3 years. We went to Florida in December. And unfortunately, he declined there.  We continued his care in Miami with a dr that knows the Sloan dr very well. I stayed there to have hubby finish the round of treatments. I wanted the records from Miami sent to Sloan. 

My secret hope was that Sloan could save his life. Yes he could go to a local hospital, but that's not what he wants, nor do I and my children. What we are trying to figure out is what to do next with getting hospice and having Sloan Kettering intervene. 

So I guess Monday morning I will once again call Sloan and tell them he needs to be seen asap, and go from there. Hubby is still eating soft things, like eggs, farina, applesauce and drinks glycerna. Not a lot, but something. I'm trying to keep him hydrated as well. 

Hubby is very coherent.  I'm still going to pray for a good outcome. There is always hope. 

So so I now know I need the social worker at Sloan and the doctors recommendation. Thanks for the info. I am so thankful

But Im really heartbroken.

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@Ditzydori, I'm sorry I misunderstood.  You said you're 3 hours away and that your husband's records had not yet been received by Sloan.. So it sounded to me as though you were coming to NY to have your husband seen at Sloan for the first time.

I mentioned getting your husband to a local hospital because he seemed to be in a lot of distress, you were concerned, and the nurse at Sloan had advised urgent care.  If he's having trouble swallowing, this can turn into a bigger emergency fairly quickly.  You'll also get help and guidance at the hospital.

Again, I apologize for misunderstanding.  You have received some wonderful advice here from some very caring and experienced posters.  I wish you and your husband all the best.

[Katcat1]

@Ditzydori,      Take him to the Emergency Room at a hospital near you or call an ambulance to take him.  Once they evaluate his conditon, everything will fall into place.  God Bless you and your husband.  Take care. 

[Irshgrl31201]

@Ditzydori, I am so sorry you are going through this. I can't imagine how fragile you are.

I guess I am not understand why you don't just call 911 and get him taken to the nearest hospital to be seen immediately if his condition is as dire as you say. Why does he need to go to a hospital 3 hrs away? I saw several others ask this but I didn't see a response. I would think they could handle it from there. 

Is there any reason you are not  doing this that perhaps you didnt mention?

Again, so sorry you are going through this,

[KathyPet]

WHo is your husband's cancer doctor?  WHo has been treating him?  THat is the first person you need to speak to.  HAsn't his current treating physician spoken to you about his condition and prognosis?   IF not then why not?  SUrely you have spoken to his current doctor.  WHo recommended you try Sloan Kettering?  THere seems to be a huge, huge disconnect here between you and his current doctor.  

NOrmally the current treating physician will discuss the options available for your husband.  IF hospice care is recommended then they should be referring you to the hospice in your area.  You call them and they will set a appt to come and evaluate your husband's condition and after consulting with your husband's doctor a hospice plan will be put into place and you will sit down with the hospice intake counselor and discuss all of this.

I guess I do not understand why you are not talking to your husband's doctor about this and are off trying to make your own appt with Sloan.  

SO, you brought your husband home from Fl seriously ill with no specific appt set up for a evaluation at Sloan and no referral from the doctor in Fl and no medical records with you?  

ONce again I highly recommend you read the book "Being Mortal"

[KathyPet]

Another question.  YOu indicate your husband is quite lucid and able to.communicate.  HAs he been told how seriously ill he is and that the chances for a cure are very slim?  HAs Hospice Care been discussed with him?  I know you said you and his children do not want to stop searching,for a miracle but what does your husband want?  AFter all it is his life and his choice to make.