A relative has late-ish stage pulmonary fibrosis, needs oxygen in bed, and can’t walk around even with oxygen. He’s getting kicked out of the hospital because they can’t improve him, but he might live another year or two and doesn’t want to pay for hospice. I can’t imagine his wife dealing with all his needs (they’re both in their 70s) but I’ve no idea if there are programs that get him care without leaving his wife destitute. They have a fair nest egg and own their house, but he doesn’t want to ‘waste’ their money on health care. I kinda get it, but also: he needs care.
Anyone know of programs to look at? I’m looking for useful links, but I keep hitting things that either look scammy or like they won’t apply (example: if he is deemed ‘disabled’, doesn’t the govt. basically not care at all until you are broke?)
The first thing that comes to mind is Medicare’s home health coverages, but I believe the amounts (and coverage) comes down to how their Medicare is set up. Your state’s department of Health and Human Services should also have some resources for navigating the selection of a group to handle the health needs of your relative. While checking your state’s resources, look into whether they have caregiver stipends and what the qualifications for the program are if one exists. If another family member can help to supplement the care needs provided by a visiting professional, there could be financial support for those efforts in addition to reducing the suffering your relative is facing.
Additionally, try calling your senators’ and representative’s office and asking after constituent assistance; many times they have staff assigned to helping constituents with challenges connecting to services in situations like yours (results may vary).
Thank you for this :-)
Hospice does not cost anything, and a patient can be evaluated for hospice if a medical doctor determines that they will likely die within the next year. Be very careful what hospice company you go with. They are businesses, and they are selling a service. You’re just not paying for it. Research them well.
A nursing home will be $10K/month, and might be a horrible experience. They are to be avoided at all costs. Medicare will pay for a nursing home IF there is some rehabilitation involved. For instance, the patient is getting physical / occupational / respiratory therapy while there. Medicare will not pay for “comfort care”, which is simply keeping someone comfortable while they’re dying.
I don’t think a primary residence can be taken for medical bills, particularly while a surviving spouse is living there, so their house should not be in danger.
Talk to an estate planner to help with safeguarding assets.
As far as home care, I got my dad a home health attendant, which will cost $25-$60/hour to help him around the house for two days per week. This worked out fine until he couldn’t get in and out of the bathtub anymore. At that point, he went into an assisted living facility ($7K/month, which didn’t even include everything), then got worse and moved up one level of care ($8K/month), then had a series of falls and wound up in a skilled nursing facility getting rehab (paid by Medicare), then began dying and was put on comfort care ($10K/month), and died after about two weeks.
It’s an absolute shitfest. Nursing homes are terrible. They basically tortured my dad so they could make more money before he died. I can still hear him screaming and it fucks me up that I put him in that place to try and save some money. They abused him, and I had to move him, while he was dying, to another facility that allowed hospice to have access to him. Hospice gave him good drugs and he died in peace. I feel responsible that his passing wasn’t easier.
Getting hospice involved earlier is a good move from the standpoint of keeping the patient comfortable, and preparing for the different stages that are coming next. They will know what to look for. You will not, and a lot of nurses won’t recognize the early signs of dying either. Get hospice involved.
I’m sorry for your loss. That is quite a cautionary tale.
Please don’t blame yourself for the Nursing home issues. They are supposed to be care givers and they failed both you and your dad. Be angry at them – not at yourself. It sounds like you did the right thing in moving him. You DID look out for him. You DID care care work to make things better.
Thanks. The screaming wasn’t something I was ready for, and it stayed with me. The staff’s indifference to someone screaming is equally shocking. This is why hospice is so important. They know what to look for before things get to that point.
If your in the US then you might look at the Genworth Cost of Care App. Also if they have long term care insurance, this is what it is for. If they do not have it, then it is probably too late to get it. Often end of life care lasts for a couple of years but it can be much longer. For two years nursing facility this is maybe $300K. Typically if you can get away with less then one shift of professional care a day, staying at home may be cheaper. That is if home care is even available. There is an extreme shortage of care in the US. Getting the correct level of care, not too much and not too little, and in the correct setting can both reduce cost and improve quality too. This is hard as it is a moving target and therefore often waiting lists too.
Talk to an elder law attorney and get legal documents drawn up including will, power if attorney, a health directive, and maybe trust documents. They also can talk about asset preservation.
Hospice, an advantage is that care is focused on quality of life not quantity. This can save money too and prevent needless life extension. Things like do not resuscitate orders may help to. Hospice can help avoiding calling 911 too… The emergency responders from 911 will always try to save life not aide in dying. There are rules and processes that their care givers need to understand. Keep in mind that hospice can be part of home care too.
Rather extreme but also some states in the US allow medically assisted suicide for terminal patients.
Lot of the above requires that the patient and their care givers be open and knowlegable about death and end of life so that time and money is applied in the most meaningful and effective way.
Thank you! I can ask around, but I believe he’s already given power of attorney to his wife and filled out an advanced care directive with the hospital (I know he’s filled out some form saying that if his breathing becomes so difficult that they need to intubate, then DON’T, but do give pain killers). I will check on the rest of the legal matters.
It didn’t occur to me that an ambulance crew might be required to ‘help’, a quick search about that confirmed this might be an issue, and also brought up a New-Jersey-specific doc telling 1st responders in particular to not give care – which is irrelevant for us, but was a interesting to find.
I doubt he’d go for assisted suicide, but he does seem to be gaining acceptance that this is terminal, so… that’s good in a sad kind of way.
I’m learning that he probably misused the term “hospice” to include all kinds of extended/managed-care and nursing home facilities. I sent him this link to clarify some of what is and isn’t available through Medicare (he also has secondary insurance, so he might not even have to pay the full 20% co-pay that Medicare never covers): https://www.medicare.gov/what-medicare-covers/what-part-a-covers/medicare-part-a-coverage-nursing-home-care
My father is a nurse and EMT in NJ, I’ll ask him what should be done so his DNR wishes will be respected even if he’s not able to voice them. Medical information bracelets are one way to communicate it but if he has additional things to do, like forms or the like, I’ll be sure to pass those along.
Check but I believe people in home hospice care are instructed to call a hospice number rather then 911 if they do not want life saving care. Maybe someone else knows the details. There are also procedures when someone dies at home. Not sure what they are.
Just mentioning because best to plan ahead. Hard to think clearly in the moment.
Just got off the phone with him.
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Contact the Primary Care Physician for DNR/DNI forms. Do Not Resuscitate and Do Not Intubate orders are color coded, and the advice is to have them in a clear plastic sleeve on the refrigerator of the home. EMTs should be aware of the color coding for the forms, and any relative around during an emergency event can point them out. They should travel with the person, so if they end up going into a palliative care setting these go with them.
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Contact the physician/np in charge of their case while in the hospital to inquire about a POLST form. If the hospital has a palliative care nurse or other position, this may be with whom you end up speaking. The POLST form (Physician Orders for Life Sustaining Treatment) is more granular than a DNR/DNI, and can allow them to be precise regarding their care should they end back up in the hospital.
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pulmonary fibrosis, needs oxygen in bed, and can’t walk around even with oxygen
I don’t want to be the bearer of bad news, but… my mom had a lung cancer, that left her with heavily compromised lung capacity. Around November 2022, she got kicked out of the hospital. Even though she could still walk without oxygen, we asked for oxygen for when she was in bed… which, this being Spain, was free. Still, the doctor signing the order laughed and said “What’s the point, she’s going to die soon anyway” (let’s say that pissed us “a bit” at the time). They gave her an oxygen concentrator, which she’d use in bed, while still being able to walk around a bit… and three months later, one night she passed away with it on.
In your case, I’d say that if all he needs is oxygen, then get an oxygen concentrator, they’re like $1500 a pop. By all means try to rent one, or get one for free… and you might want a home assistant like an hour a day to help with hygiene… but the best you can do, is spend time with him, have him make a testament if he doesn’t have one, and arrange for funeral costs, then spend more time with him; that “year or two”, might as well be a “month or two”.
Thank you the delicate handling of the grim truth. We understand that he may die much sooner, but the part he worries about is the possibility of lingering so long that his wife is left with a pile of bills and no remaining funds. Whether home or in care, he will absolutely have oxygen.