metastatic liver cancer, hospice questions

[TravelingChris]

Hi all,

 

   On Saturday, my dh got the news that his father went into the hospital a week prior and it turned out to be metastic liver cancer- probably from his previous colon cancer but maybe from the earlier prostate (or maybe all three are related).  Anyway, my FIL is nearly 88.  THe hospital was arranging for him to go home with hospice nurses visiting but he refused since he was in too much pain.  (I also don't know if he was reluctant to go home because his two sons who live with him might take his medications for themselves).  Anyway, we are glad that he is in an inpatient hospice unit since my dh's two older brothers are incompetent to care for him. 

 

How long can we expect him to live?  When dh talked to him Saturday, he was barely coherent and is that like it will be from now on or worse?  THat may make a difference whether dh will go up now or wait for the funeral.  They live in the NYC metro area so hotels, etc,. are very expensive and we live two days drive away.  He hasn't seen his father in 10 years but that was what his brothers ended up doing- he hasn't even had a conversation with him in over 5 years since the brothers unplugged the phone.

 

WHen I mean his brother are incompetent, I mean they are total losers.  They have been dependent on their elderly father -the oldest for the last 27 years at least, and the other one for at least  10 years, I believe that the younger one, who is still 2 years older than my dh, also brought in various other people to live in that house and be dependent on FIL> My dh wants to do as little as he can with his brothers but does want to respect his father. 

 

Any advice?  He is calling them tonight to find out more- like does his father have a policy to pay for funeral expenses or how do they expect to pay the costs?  Because if we are to pay, we will do everything to make it cheap- - we are in a precarious situation in that we may be losing a huge chunk of our income in June unless dh gets a new job and we are not able to fund anything more than minimal.

 

 

[PentecostalMom]

I would call hospice and ask them about the length of time he may have.  The medical professionals may know better than the brothers.  Also, can your dh just go and stay at his dad's house?  I know you said his brothers are incompetent but is there any reason that he cannot stay there to cut costs?  If he did stay there, it would give him more opportunity to look around, get a feel for things, and maybe locate any paperwork his dad has.  Just suggestions.

 

So sorry that your dh is losing his dad.  Even though he hasn't seen him in 10 years, he is still his father.  :grouphug:

[Twigs]

:grouphug:  :grouphug:  :grouphug:

[Tiramisu]

Usually, if you get recommended to hospice, there is a life expectancy of six months. People can live much longer than that, though, and I know nothing about the condition he has.

 

ETA: I'm sorry that everything is so hard.  :grouphug:

[Flowing Brook]

Hard situation. I would recommend talking to the hospice and ask them.  Does the hospital offer a place to stay?  Would your dh deeply regret not seeing his dad a final time?  Some states offer financial aid for funerals if the family does not have enough to cover the expenses. Hugs to you all. :grouphug: :grouphug:

[magnificent_baby]

So sorry you are going through this. Agree with a PP, call the hospice nurses. They can tell you what stage of the dying process he is in based on symptoms. When my aunt was on hospice, they also helped a little with funeral arrangements and legal paperwork. Call as soon as you can, there is so much to do to prepare that may help ease the burden later. 

[Miss Marple]

I'm so sorry you are dealing with this.  It's still troubling for all even if you weren't close.  I have had 2 close relatives who went into hospice in the past few years.  My grandmother passed away less than a week after being put on hospice and my sister in law passed away just over a week later.  My sil had stage 4 metastatic melanoma.  My understanding from the physicians is that hospice is only used for patients who have 6 months or less to live.  Sometimes the patient makes it past that time and experiences a bit of recovery at which time he will go off hospice.  But the 6 months is the time frame the physicians must feel is there (and they can be wrong), but the ones I'm familiar with didn't last that long.

 

Prayers for you as you work through the details. It will be hard dealing with loser family members :(  Stay strong...you'll get through it.

[HS Mom in NC]

People are usually recommended to hospice when they have 6 months or less to live. There are people who improve and people who live longer than that, but that's very rare.

 

Between the hospital and the hospice facility, there should be social workers available to answer questions and connecting him with any services he needs.  They should be available to your husband, as an immediate relative too.  Your husband needs to call what ever medical facility his dad is in and ask those questions.  Only those professionals working directly in his case can answer them.


 

[datgh]

I would call the hospice house he is staying at for info as to how his Dad is doing.  Hospice usually has social workers involved with the family and the social worker may be able to help your husband sort things out with his brothers. An unbiased third person might be very helpful in this situation. It would also be helpful to find out who is the executor of Dad's estate because that person would be responsible for paying for the funeral from the estate.  :grouphug: :grouphug: :grouphug:  to your husband.  I just lost my Dad a few weeks ago.

[TravelingChris]

No, he cannot stay at the house.  We have no idea who is living in that house and we do know from when we were lasting able to talk with FIL that both brothers are substance abusers- we just don't know if they doctor shop or get them illegally and we aren't sure what substances are being abused.  I do know that years ago, one of the brothers was able to take 5 flexerils and walk around- both dh and I had prescriptions for that then and neither one of us could even take one pill without being knocked out. 

 

Anyway, I did talk with the nurse and apparently his blood pressure is dropping and he in minimally responsive. He also has gallbladder stones.

 

I was happy to see that at least there is an affordable way for us to take care of it if we have to- I found cremation prices that we could afford.  For even less, he could be taken to the Medical School.  What I am concerned about is his brothers deciding to do things they can't afford and expecting us to pay.  We can pay for the cremation but not for extras like memorial services at a funeral home, etc  Since FIL was in the Navy during WWII, we could do a memorial service at the ocean, I would think, for nothing.  Then, later, next year, when dh gets employment, we could find a place to memorialize his FIL by buying a plaque or stone or something at a place FIL would have liked. None of this would include funding the drinking of my BILs which a reception would turn into. And FIL was always taking about donating his body to science or cremation so that is well in keeping with his wishes.

 

 

 

 

[LMV]

I would recommend that your husband attempt to contact whoever his father's attending physician is for information on prognosis.  *He may want to check with his brother's to see if there is a security code or password he will need for the doctor to release information over the phone.  Many facilities do that now.*

 

The truth is that no physician (who is honest) can state with certainty exactly how much time someone has left.  We are offering (albeit a often a very educated one) a guess at best. I will say that usually the criteria for inpatient hospice is a life expectancy of < 5 days.  That is the criteria for the unit affiliated with our hospital and I believe that it is actually based on federal funding criteria so it is probably pretty similar elsewhere.

[datgh]

If he is a WW II Vet than he can be buried for free at a veteran's cemetery.  You would need to find his discharge papers for this.

[prairiewindmomma]

Aside from the above advice of contacting hospice/doctors and using their social workers to help set things up....

 

very few cancer patients are awake/aware at the end. In the last few days before dying, they often go into a twilight style coma as their kidneys shut down, etc. If he is already minimally responsive, I don't know that that he would improve in consciousness unless the state has been caused by medication or infection and either of those things change.

 

Dh needs to figure out what it is he needs from the process. It sounds like perhaps he doesn't have a need to see him while living? He just wants to make sure that he has a proper burial? Cremation and donation are both good inexpensive choices. Another choice would be to bury him without embalming, etc. and to pick up a casket from costco. They sell them with overnight delivery. http://www.costco.com/funeral.html We found that the caskets we ordered directly were about 1/5 of the cost of getting them from a funeral home director. In many instances, they appeared to be the same casket.

[sbgrace]

I'm sorry.

 

 

 

Around here (we had a friend recently die inpatient hospice, and my mother is a hospice social worker), it is my understanding that they are reluctant to give time frames. People outlive or underlive them so often, that it is really a guessing situation, at least until the person stops drinking.

 

My husband's uncle was given 3 days or less. My in laws flew down there, planning to stay to the end/through the funeral. They've been there going on two weeks...so even if you get a number, it might not be accurate.

 

Would it be important for your husband to see him one last time while he's alive? Id so, I'd probably go now for a short visit, just to say goodbye. If he's got minimal responsiveness when he arrives, it's possible he will be aware of the visit. Even those without outward responsiveness sometimes show some awareness in brain patterns/heart rate/etc.  Honestly, that would be more important to me than the funeral if the cost for both was impossible to swing. But your husband may have different feelings.

 

It's possible the hospice social worker could try to facilitate decisions/communication on the funeral/other options between the siblings.

 

 

 

 

[TechWife]

 I will say that usually the criteria for inpatient hospice is a life expectancy of < 5 days.  That is the criteria for the unit affiliated with our hospital and I believe that it is actually based on federal funding criteria so it is probably pretty similar elsewhere.

 

 

This is incorrect. Medicare Part A requires a life expectancy of six months or less in order for hospice care to be covered. There is no distinction between inpatient and outpatient hospice care requirements as far as life expectancy is concerned. Medicare Part A will pay for the hospice services, but not room and board in an inpatient facility. Medicaid coverage varies by state, but I somehow imagine that Medicaid might cover room and board for patients who don't have an acceptable home environment or family willing to take care of them. Again, that would vary by state. 

[TravelingChris]

thanks all to the info you are all sharing.

 

My dh would have liked to see him as would all of our children. We would preferred to see him while he was concious and able to communicate. Dh talked very briefly to his Dad a few days ago. What we cant do is go up there for a few days, come home and then go up there for a funeral or service

[Starr]

Everyone plays this differently but I would go up now and see him and let the brothers take care of the rest. Have a family memorial service that is meaningful to you in your space. I wouldn't even begin to negotiate with someone about funeral arrangements that I couldn't communicate with under less stressful conditions.  :grouphug:

[LMV]

This is incorrect. Medicare Part A requires a life expectancy of six months or less in order for hospice care to be covered. There is no distinction between inpatient and outpatient hospice care requirements as far as life expectancy is concerned. Medicare Part A will pay for the hospice services, but not room and board in an inpatient facility. Medicaid coverage varies by state, but I somehow imagine that Medicaid might cover room and board for patients who don't have an acceptable home environment or family willing to take care of them. Again, that would vary by state. 

 

I may not have worded my response well. If the scenario that the OP described were to happen here it is unlikely that he would transfer into IP hospice unless the physicians felt death was likely imminent in five days or less and they felt that he just couldn't be cared for at home even with hospice nursing support (which doesn't replace the need for a competent family member to be available).  Our hospice unit here will only admit for respite stays < 5 days and for situations where they feel death is likely within five days and the physicians involved will state that there are valid reasons (from a palliative standpoint) that this can't be accomplished at home.  As it has been explained to us physicians, once someone opts to convert their Medicare Hospital Coverage (Part A) over to Hospice benefits then their Medicare Part A benefits change.  There is some provision if the inpatient care is arranged by the Hospice agency and deemed necessary and suitable then Medicare will pay for inpatient sevices including the room and board part in these cases.  I am sure that in some situations the inpatient end of life care is denied and our inpatient unit just absorbs that cost.  They set their criteria in such a way that they improve their likelihood of compensation but maintain a sense of compassion for patients and families.

[ThatHomeschoolDad]

Time will vary from patient to patient, and depends on a lot of things.  I have liver mets, so it's not just that one particular organ is involved, but by how much, and how fast the tumor(s) grow, and how fast toxicity builds up in the body, and, and, etc.   Ask hospice, and frankly, a veteran hospice nurse might be able to give you a better time frame than a hospice doc.  That was certainly true with my families two hospice experiences.  If you can talk to a nurse who has had regular contact with your FIL, then he/she will have the best assessment.

 

As for NY Metro lodging -- that depends.  I always think things seem closer IRL than they do on a map, so it's worth looking a little farther afield.  Are we talking in NYC?

[LucyStoner]

Speak to the people at the hospice. They may have a bed for your husband to sleep in. Honestly, he should go as soon as possible if he wants to see his dad before he dies. When my mother was moved to hospice, one of us stayed with her the whole time, 24-7. There was a wide window seat bed for family to sleep. We were local but we didn't want her to be alone. If things are more stable and he can come home after a visit, great but these may be the last few days of his life and you can't get that time back.

[ksr5377]

My mom is a nurse and we have lost 4 family members recently, all who used hospice.  She has always told me that people are usually gone within a week on hospice, and with our 4 family members she was right.  I think contacting his nurses and explaining your situation would be a good idea.  They'll have the best information. 

[Tess in the Burbs]

Honestly our experience with hospice meant imminent death. Stepmom was in horrendous pain. Told 3 months, later that day 3 weeks, by morning she had only hours. She checked into hospice and passed away. There was no time to talk with her.

 

Your dh needs to go now and get papers he needs while he has a chance of talking to the man. (Hugs)

[PrincessMommy]

I would recommend that your husband attempt to contact whoever his father's attending physician is for information on prognosis.  *He may want to check with his brother's to see if there is a security code or password he will need for the doctor to release information over the phone.  Many facilities do that now.*

 

The truth is that no physician (who is honest) can state with certainty exactly how much time someone has left.  We are offering (albeit a often a very educated one) a guess at best. I will say that usually the criteria for inpatient hospice is a life expectancy of < 5 days.  That is the criteria for the unit affiliated with our hospital and I believe that it is actually based on federal funding criteria so it is probably pretty similar elsewhere.

 

That is the way it is with the hospice facility I'm associated with as well.  Our facility only has 10 beds, they cannot take every hospice patient as soon as they are placed on hospice (going under hospice *care* is 6month or less to live).  They will occasionally take a pt. for longer if there is extenuating circumstances and they have enough beds.

 

A question you may want to ask the hospice nurse is if you FIL is 'actively dying'.  That is a term that they may use to distinguish between someone who is terminal and someone whose death is immanent.   Usually someone who is actively dying has about 24hours.   But, that said, I've had patients go for nearly a week that way, which is very sad, actually.

 

 

[PrincessMommy]

Honestly our experience with hospice meant imminent death. Stepmom was in horrendous pain. Told 3 months, later that day 3 weeks, by morning she had only hours. She checked into hospice and passed away. There was no time to talk with her.

 

Your dh needs to go now and get papers he needs while he has a chance of talking to the man. (Hugs)

 

Often times families wait until very late to bring in hospice care.  I think it's a scary scenario for many people struggling to face either their own death or that of a loved one. 

[LMA]

:grouphug:  :grouphug:

 

I'm sorry to hear about this. Before you make assumptions about funeral arrangements and cost, please keep in mind that your FIL's assets, such as his house and bank accounts, would be used to pay for a funeral and outstanding care expenses. What people usually do is have the funeral and then liquidate the assets to pay for the funeral. 

 

Secondly, he is entitled to burial in a veterans' cemetery. Please look into that. Here is the site: http://www.cem.va.gov/burial_benefits/

 

Best to your husband and his father.

 

[TravelingChris]

Thanks you all.  Based on what the nurses have said and what his brothers have said, he has decided to just call his father every day.  The thinking they have (not my dh, but his brothers and his dad) is that if someone shows up, that person will die right away and it is that person's fault. 

 

We do know now that he does have at least a $5000 life insurance.  That should take care of it.  Not that it is our recommendation to them- we think they would be wise to do it cheaply and save that money to try and save their house that they will both inherit, if it isn't used up to take care of debts.  My dh was counseling them that if they do get the house, if they feel they may lose it because they don't have enough for taxes, they should sell it first  before it is seized.    At least we know now that dh is not the executor nor does he inherit.  That is the way we wanted it since dh really didn't want to be the enforcer for his older brothers.