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?)
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
Just got off the phone with him.
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.
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.
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.
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.