Article in NYT about hospice

Both of my in-laws were in hospice in my home. While he had Parkinson’s disease with early signs of dementia, was still quite lucid when he arrived. She had no dementia, only renal failure and all that it brings with it. Both were close to the end, so we did not have the difficulties that many have experienced with their lo’s with dementia. For us, what was provided was perfect but, we weren’t dealing with long term care and exhaustion from years of caring pre-hospice. Now, my experience is very different with my mom as she is still somewhat mobile and receiving care at her memory care facility. I believe what my in-laws received is what “in-home” hospice was intended to be rather than months and even years of caregiving with very little help coming from the program. Perhaps rather than lobbying for a simple addition of funds, we should be more targeted in our wishes. Instead, maybe we should be asking for 2 or more levels of care so that certain patients qualify for additional home care vs the bedridden person who presents with far fewer needs from family caregivers.
Our government has a bad habit of throwing money at problems with no real plan, maybe it’s time to change that, starting with hospice care.

This sounds a little sketchy, especially since several members of the family are supposedly in the medical practice. One of them even brought supplies home from the hospital for an IV,but didn't stop to ask how they were going to hang it? If most of them were doctors, no wonder they didn't "feel comfortable" doing some of the tasks required because those are things usually done by NURSES, who are the backbone of the medical facilities in which they work. And, if they were all doctors and COULD have put the patient into a specialized care center, why didn't they? Money shouldn't have been a problem for them. Surely before they took the gentleman home, someone explained exactly what hospice would/wouldn't do. Just doesn't sound right, somehow.

Medicare’s at/in home benefit program's - like hospice and PACE - all require there be a capable adult in the home providing 25/7 oversight & caregiving ALL OTHER TIMES when the elder is not directly being cared for by hospice staff or is not at a PACE center or PACE staff.

It’s a requirement indicated in the application. The NYT author as a physician should have had an inkling of how complicated their father’s care plan would be OR if not, they had access to other physicians and health professionals for advice and guidance on this, so that they could have made the most feasible decision as to their own ability & availability to do their dads care plan.

The issue is imo is that folks so often hear and read and wish what they want things to be. No reality check is done.

The NYTimes article author stating “…forced to move a LO to a hospital or nursing home…” is imo a big steaming load. MediCARE is not forcing family to do this. Either he, Dads POA or someone else in that family made an active decision and commitment to have in-home hospice. They had off ramps they could have done…. he wrote they could have had the Dad go into an LTACH, could have had the Dad go into a SNF. They also could have hired and private paid for skilled caregivers who did all the things necessary for this elder to live at home. The author and his siblings / family were never forced to do anything, they chose to do what they did.

That he mentioned “…could have put him (dad) in an acute care hospital bed”, to me, meant that his dad had a very complex care plan. Getting a bed at an LTACH / Long Term Acute Care hospital is rather difficult to get as patient absolutely has to have a chart with very serious complications. You cannot blithely on your own get into an LTACH as they do not have an ER or ED for intake. My MiL went into one, referred by the hospitalist as she was extremely septic with cascading organ failure; her care plan was complex so her old NH wasn’t taking her back and way more complex care than done on a regular hospital ward. For the author, a Placement in a LTACH could have been done. This family chose not to do this. They were not forced to do this but chose to.

His complaint on Medicare “by providing so little funding” is imo ill placed (pun intended). Both hospice and PACE get $ from Medicare based on a monthly capitation rate plus $ for initial screening, For hospice it’s abt $4890 - $6219 a month but has an annual max of abt 35K. PACE slightly more abt 6K a mo but no annual max as no 6 mos of less to live is not part of PACE eligibility. Either way it’s a good bit of $ Medicare pays agencies so that an elder can remain at home with their family’s under a regulated & verified care plan.

Doubling or tripling the hospice $ won’t work as the program has to be cost effective and with a cost benefit analysis as per Public Law. The formulas for this are based on rates paid to a facility by Fed & State funded LTC Medicaid. My State pays $7,200 mo to a NH for a LTC Medicaid bed, neighboring States pay $7,339 & $9,430 a mo. As long as State lege across the US continue pay as little as possible to a NH, hospice and PACE can’t increase their own rates.

The father could have gone into a LTACH or a SNF. The family - for whatever reason- chose not to do either.

This is my exact problem with the hospice system. It turns untrained, exhausted, grieving, sometimes sick themselves family members into caregivers. Heck, I AM a nurse (LVN) and was not OK with this. Why? Because I hadn’t worked in a hospital since 1994, and it was pediatrics. And then it was allergy office, and OB office. When my normally independent and robust dad suddenly became ill, I was fresh off a second shoulder surgery. Even if he and I had been ok managing his personal needs, I could not have managed a bedridden 210 pound man. My brother, who lives a 6 hour drive away, and his wife were trying to come up with a system where they took turns coming to relieve me. I knew we were one car issue or Covid case away from that breaking down. So, I put him in a small AL.

We need more inpatient hospice options, and to get Medicare to pay for more than the very limited respite that they do.

Re: IV fluids as a comfort measure.

I don’t know whether Medicare considers IV fluids in hospice to be within bounds of “comfort care.” It gets tricky because cost, setting, as well as philosophy are all involved. It’s definitely not something that most family caregivers could manage, at least without training as well as equipment. I doubt I would have attempted it. But what’s the alternative in a home hospice setting? How often would a nurse have to visit? What if the person kept ripping it out?

I will say when my dad went to the hospital right before he was approved for home hospice, they put him on IV fluids and he became markedly more alert and talkative than he had been in at least a year. He even felt hungry which was also very unusual.

He had dementia and swallowing problems and I’m sure he was chronically dehydrated, which in turn contributed to his exhaustion, dizzy spells, and falls. But, does this mean the right thing to do would have been to have him on IV fluids indefinitely or on and off indefinitely? He hated having the line connected to his arm and he hated having to pee a lot. He also foufht against nurses and aides in general and just wanted to be left alone.

I think that Medicare paying for home health aides many more hours per day for home hospice should be part of the deal. This would be less expensive than hospitals or SNF. But it seems unlikely to happen.

More:

“Ironically, we could have put my father in an acute-care hospital bed costing $3,000 a day without any pushback from Medicare. The Medicare hospice benefit is supposed to provide a cost-effective alternative at home to expensive end-of-life care in hospitals. But by providing so little funding, Medicare too often makes hospice care an unviable option.

“Our family was fortunate that we had the resources to provide the care my father needed. My siblings and I divided up responsibilities, and one of us stayed with him at all times. But many families are unable to manage and are forced to move their loved one to a hospital or a nursing home (or in the rare cases that Medicare allows for it, an inpatient hospice facility). Patients themselves may choose to die in an institutional setting for fear of being a burden on their families or not receiving adequate symptom relief.

“Sadly, the practice of relying so heavily on families subverts the very purpose for which hospice care was created. When Cicely Saunders, a nurse and doctor, opened the first modern hospice program in London in 1967, she laid out three guiding principles for easing the process of dying: relief of physical pain, preservation of dignity and respect for the psychological and spiritual aspects of death.”

Thanks for posting this as somehow I missed this article on The New York Times website even though I usually keep an eye out for any caregiving topics.

I thought this was a particularly alarming anecdote:

“I remember a Friday evening when we decided that my father, who had stopped swallowing, was severely dehydrated and needed intravenous fluid. The hospice agency wasn’t equipped to provide that service, even as a comfort measure, so my brother drove to a hospital to get an IV kit and a few bags of saline and then came back to the house and inserted the IV catheter himself, as my father kicked and hollered. When my brother was done, he tied the bag of fluid to a ceiling fan with some sewing thread because we didn’t have an IV pole.”

😳

I could not log in to read the article without creating an account, which I didn't do.