Laws that You Should NOTICE and CARE About

The title of this post is a play on words, but you won’t get it unless you read this entire thing. For a change, this attorney is going to be talking strictly about the law. Today I’m writing about some NEW laws that directly affect the community of older adults and their caregivers. I’ll try avoid the “legalese” to make it all more understandable (and not so boring) plus why, and how it affects you and your loved ones. The first law I’m going to share with you is the NOTICE Act. ”NOTICE” is an acronym (of course) that stands for: Notice of Observation Treatment and Implication for Care Eligibility. It’s a federal law, so it applies to anywhere in the U.S. But before I talk about the law, let me describe the problem it’s designed to fix… When you go to the hospital, if you have a heart attack, a stroke or a serious fall for example, you’ll likely find yourself in the E.R.   From the E.R. you get moved to a room. For two days, you occupy a bed, eat hospital meals, have nurses and aides bustle in and out taking vitals, giving you pills, and charting everything; they help you bathe, or shave; doctors order tests and x-rays or images; a doctor comes to see you every morning. Unbeknownst to you however, it’s quite possible that even though you are: receiving hospital care, from hospital staff, in a hospital room, laying in a hospital bed, eating hospital food, even wearing a hospital gown with your rear-end exposed – yet – you have not been “admitted” to the hospital. It’s true! Instead, you are there on “observation” and you are NOT admitted as an inpatient. I have seen patients in local hospitals on “observation” for as much as a week. Why does it matter? You’re getting all the care described above right? Well, let’s expand the story a bit…. After two days, the doctors decide that you don’t have a broken hip, or, that you had a stroke or heart attack, but you are stable now. You are weak, maybe have issues with balance, but you no longer need acute (hospital) care. However, they say you could benefit from physical therapy and rehabilitation. So they discharge you to a rehab center. You stay in rehab for a week to get your strength back and work on the balance issues. So far, so good. Two months later, you get a bills from the hospital and 7 days in rehab for tens of thousands of dollars. Shocked and dismayed you just can’t figure out why Medicare didn’t pay part or all of your bills. The hospital bill, while on “observation” is covered by Medicare Part B and only as outpatient services. Unlike Medicare Part A, which covers inpatient hospitalization, Part B has a sizable deductible and very likely co-payments for every doctor, test, pill or technician who touched or saw you while in the hospital.   Some of you may not have Part B Medicare and might be on the hook for the entire hospital bill. Worse, Medicare simply will deny payment for 100% of the rehabilitation unless you had a bona fide inpatient hospital stay for at least three days (not including the day of discharge). Observation days don’t count. That means that you might have been on “Observation” for two or more days, and then as an inpatient for just two, but without the required three day Inpatient status, there will be zero Medicare coverage for the rehab. You may want to know why hospitals do this. (if not, skip the next coupla’ paragraphs and read the good news about how the problem is being addressed). There’s a reason hospitals have adopted this observation status myth. The reason is that if they RE-admit patients too frequently, Medicare dings the hospital and takes back money they paid them for what Medicare thinks is too much ineffective hospital treatment. The theory is that if hospitals are effectively caring for patients, are reimbursed by Medicare for that care, then patients should not be going through a revolving door in and out of the hospital. In response to the re-admission penalties levied on hospitals, hospitals simply stopped admitting folks in the first place. Instead as described above they simply placed you on “observation.” When you later come back to hospital through the revolving door, you are not a “re-admit” – you’re either on observation again, or perhaps admitted for the first time. On paper. Here’s the rub. Hospital’s refusing to admit you so they can dodge the requirement to reduce re-admissions resulted in a situation where Medicare – instead of penalizing hospitals for insufficient care –are now was dinging (clobbering?) patients for the care and rehabilitation they desperately need. As if sick, frail elderly people needed more stress? The biggest problem of all was that patients and their caregivers had no idea what was happening until it was altogether too late. You found out only when the bills came! And even those patients who knew enough to inquire as to their admission status, found it extremely difficult – if not impossible – to pin the hospital down to tell you if you were an inpatient or on observation status. Enter Congress. Yeah, yeah I know. I can hear you groaning from here. But for once, they did a really good job. The NOTICE Act, first introduced in the House in February of 2015 sailed through both chambers and was signed by President Obama on August 6th of 2015 to become the law of the land. In short, the NOTICE Act, require[s] hospitals to provide certain notifications to individuals classified by such hospitals under observation status rather than admitted as inpatients of such hospitals.” (You can read the entire bill and the Congressional Research Service Summary here.) The details of the law are great. It requires hospitals to provide this notice to all patients that are there on more than 24 hours of observation status, the notice must be a written and oral explanation of their status, in a way that you understand and they have to explain the consequences of that status (see above!). Never the less, it will probably be a while before hospitals step up to this requirement. If you or a loved one lands in the hospital and you find yourself in a room, or in the E.R. for more than 24 hours, ASK what your status is. They have to tell you. Meanwhile in VIRGINIA, there’s a new law on the books that attempts to help slow down that revolving door that so often results in return trips to the hospital. Initially called the CARE Act but now enacted in the Virginia Code as § 32.1-137.03. Discharge planning; designation of individual to provide care (you can read the entire law here). This law (enrolled July 2015) is designed to force hospital discharge planners (they used to be social workers) to provide critical information to the family or designated caregiver and allows caregiver to ask questions and receive training so have the tools needed to see to the necessary follow up care. This must take place before the patient is discharged. I cannot tell you the countless number of times I’ve encountered elderly patients, too sick and completely overwhelmed to have any understanding of what’s happening to them when hospitalized; Likewise, family members are completely dazed, emotionally drained, on edge and not truly understanding a darn thing that’s happening when a discharge planner calls them to tell them “we’re discharging your mom this afternoon.”   Then they are given a pile of papers to sign (which they do not have time to read, much less understand), mom is loaded into a wheelchair and off they are pushed to the revolving door out front. Small wonder, when Mom or Dad are not adequately cared for at home – for instance a medication error is made, a missed appointment for needed tests or therapy results in another trip to the E.R – yep, yep, yep. A “Re-Admit” and back through the revolving door of the hospital (see above). When the family or paid caregiver makes such a mistake, it’s hard to blame them. They have a pile of unintelligible discharge paperwork that they didn’t understand at the time, and they don’t remember what (if anything) was said either. They are still tired and stressed. The CARE Act was designed to address this problem by sending patients home with a properly informed caregiver who has all the information and ability to carry out needed care tasks. Key elements of the law (notice the placements of “must” “shall” and “will” – they got to do it!): Each hospital inpatient can designate someone who will care for, or assist the patient in his/her residence (home, not another hospital, rehab or nursing facility). I will call that person the “caregiver” though the law refers to them as “designated person”. The hospital will consult with the caregiver regarding his/her ability to provide the care, treatment, or services. The caregiver’s name and contact information is charted at the time of admission. The patient can change the caregiver at any time and the hospital must chart it within 24 hours of the change. The hospital must give information regarding the patient’s discharge plan and any follow-up care, treatment, and services the patient requires prior to discharging the patient. The hospital must provide the caregiver the opportunity for a demonstration of specific follow-up care tasks that they will need to perform based on the patient’s discharge plan before the patient’s discharge They must also have an opportunity to ask questions regarding how to perform care tasks. Hospitals must communicate this information in a “culturally competent manner” and in the caregiver’s native language. The hospital shall notify the caregiver of discharge and shall provide the caregiver with a copy of the patient’s discharge plan and instructions and information regarding any follow-up care, treatment, or services that caregiver may need. The discharge plan shall include a description of the follow-up care, treatment, and services that the patient requires; that must include contact information about any health care, long-term care, or other community-based services and supports to carry out the plan. This new law, which we’ll call the CARE Act, is a basis for holding hospital discharge planner’s feet to the fire. Their job can no longer just be a matter of filling out forms and shoving patients out the door. They must now ensure that discharged patients and their caregivers have the necessary information and tools to make sure their patients can go home and get better. Together, these two laws are tools we can use to make sure you get the care you need during and after a hospital stay and ensuring that Medicare will properly put the emphasis on hospitals to provide quality care so that we can stop the revolving door. I hope that’s made some important new laws understandable for readers who are “frequent flyers” at hospitals and that is most of my elderly clients. For now, that’s enough law from this attorney. Stay safe and healthy!

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On Death and Dying Well

This is going to be a tough post. I’m going to talk about death and dying. I’m going to tell you some stories of clients and friends who have died recently and what it was like.

In the course of my work, I spend most of my time counseling older folks and their adult children about their options. How to manage their stuff when their health fails. Who will make and what healthcare decisions need to be made.  How will they distribute what’s left of their stuff when they die?

Those discussions often begin when a elderly parent has a medical emergency or takes a precipitous decline. Sometimes the parent or adult child has had the foresight to engage me or another professional before a serious health issue occurs.

One such client, I’ll  call her Lucy, died last week.

Lucy called me up last year and engaged my service a year or so ago. At that time she seemed pretty healthy although she was growing older and frailer. Lucy was an artist. As is sometimes the case, I connected with Lucy in ways I don’t always do with my clients. Some of them I grow quite close to.  I liked and admired Lucy –  I think we were  both immediately comfortable and at ease with each other sitting around her kitchen table in her comfortable old farmhouse surrounded by much of Lucy’s collected treasures.  Lucy has several adult children. She agonized over whom to name as Executor over her relatively modest estate, whom to name as Power of Attorney and whom to make her Healthcare Agent.  We settled all that and a week or so later she dutifully signed, had witnessed and notarized all her documents. That was that!

I ran into Lucy a couple of time over the last year. At an art show. At the SeniorCenter. She had divorced her first husband eons ago and never remarried. She did have a “companion” – he too was growing older and quite frail.  But she took him everywhere and they seemed quite content in their circle of family, friends and community.

A while back – maybe 6 weeks ago or more – a mutual friend of informed me that all was not well. Lucy was sick. They feared it might be cancer. They were doing tests and would know more soon.

In my line of work, this kind of news is pretty common. When you work with older people, they are forever dying on you. It comes with the territory.  So I was not surprised by this news though I was saddened and concerned for Lucy, her friend (who needed her to help with his daily needs) and all of her adult children, grandchildren and even great grandchildren.

I didn’t hear anymore until last week, when one of the sons, one called me to tell me that Lucy was in the hospital. In fact, she was in ICU. And that it “didn’t look good.”  He wanted my help to sort out Power of Attorney issues and might I be available. I told him I could come by the hospital right away and to look for me within the next ½ hour.

ICU Death
This is what dying in ICU might look like

By the time I reached the hospital ICU unit, the representative from Hospice was already there. Lucy and her sons were making plans to transfer her to Hospice House. She would be discharged there the next morning provided all arrangements could be made.

Lucy did not look good. Her breathing was very labored and she was panting a little even. She was on oxygen of course; though she was always a slight little thing, she seemed emaciated and sunken to me. Her skin color and tone was bad.  Her eyes were darting rapidly from side to side and she was clearly very anxious.

The most I could do was reach out and take her hand and say hello. I said, “well, I guess I don’t have to ask you how you are…?”  — that got a wry smile out of her.

The hospice person excused herself and looking at Lucy I could tell she was overwrought and tired. They had come in early that morning by ambulance into  the E.R. and it was now after 5 p.m. After asking her permission to speak to her sons (which she gave) I suggested perhaps she was tired and needed some rest to which she promptly agreed. I asked her if she minded if we went down the hall  –  just the boys and I – to talk for a few minutes. She nodded with relief. Her eyes were drooping already (I presume she was already getting large doses of pain medication).

When I tucked Lucy up in her bed, I noticed she had ink marks on her chest. The kind they use when they do radiation treatments.  She was cold so I pulled the blanket up further and touched her cheek by way of goodbye. I was pretty sure I would not see her again.

I walked with the boys to the “consult” room. They told me that they had been told just today that Lucy had stage 4 lung cancer.  Then they told her there was nothing more they could do.  I told her sons that now was not the time to worry about banks, or bills, or Powers of Attorney or any of that stuff. Now was the time to spend with their mother and each other. And then I left inviting them to let me know how things progressed and to call me if there was anyway I could be of assistance.

Lucy never made it to hospice. She never even made it out of the hospital. She was transferred off the ICU and died a few hours later in a “regular” hospital bed.

For six weeks (at least) Lucy had undergone tests and treatments of all kinds – she had struggled to breathe, had radiation, and all kinds of drugs and chemo for six weeks. Surely the medical community had already diagnosed her with stage 4 lung cancer. Worse, they had to know the treatments and poisons they were pumping into her were all for naught and indeed made what remained of her life more difficult than it had to be. Just organizing alternative care for her companion and getting to and from the dozens of appointments she must have had would have been a serious challenge.

This is not the first case I’ve seen like this. Nor the last.

Earlier this spring, I was called to see a man in UVa Medical Center. He was suffering from advanced  liver cancer. He had been treated, radiated, chemotherapied and was preparing to be discharged home into the care of hospice. He wanted my assistance to write his burial instructions and Will. He was on heavy doses of narcotics. He could not tell me what time of day it was or even if it was night or day (there was a window right behind me. He was in pain. He was bloated and discolored and he could not hold his hand steady enough to write. He died the next day at home before he could finalize any arrangements and before Hospice could even sign him on.

Last year I was called by the administrator of a local Assisted Living to write a Will for a gentleman who was already completely debilitated and near death – blinded from the effects of diabetes and macular degeneration, he was in great pain and suffering from several serious medical conditions. The next day he was transported to Martha Jefferson Hospital where he lapsed into a coma and died of uremia and kidney failure without ever regaining conciousness much less executing a Will.

Three years ago, a dear friend – not a client – at age 80 developed a very aggressive form of lung cancer. When I told my partner, who is an R.N. and hospice case manager, about my friend and told her was called a “Pankose” tumor, she shook her head knowingly said, “six weeks.”  My friend proceeded to deteriorate quickly. Yet the radiologists and oncologists continued to urge her to undergo radiation and if possible, chemo to check the tumor’s growth and “make her more comfortable”. The tumor was inoperable. It was so large and so entwined in the brachial nerves that there was no chance surgeons could safely get at it.  After a few weeks, my friend developed a blood clot in the arm on the same side the tumor was growing. Her arm swelled to the size of an overripe melon. She was in agonizing pain yet the doctors insisted she continue to get up, dressed, climb in the hot car (it was June), travel to Mosby Radiation clinic, undress, climb on the table and lie flat and still on her back for 30 minutes or more. Weeks before she had already developed difficulty lying down at all – even laying propped on a wedge pillow in her own bed caused her pain and made breathing (not to mention sleep) difficult. Lying on a cold metal table staring at a radiation tube for ½ an hour was sheer agony.

I went with her on several of these trips to various doctors and clinics (she had accompanied me months before to MY appointments at UVa’s Cancer Center and visited ME in the hospital following surgery).

About three weeks in, she had just about given up and was asking the doctors about alternatives. Not yet ready to say “hospice” the discussion turned to “palliative” care. That is, treatment to make the patient more comfortable, relieve pain and reduce symptoms. A week later, my friend had just about decided to give up “traditional” cancer treatment (which was having no positive effect in any event) when the radiologist said to her, “Oh I’ve seen patients with this kind of Pankose tumor live for 5 years!”  So my friend struggled back up on the table for her radiation treatment again.

A week later, we were in the hospital with her again. The clot was so painful and the swelling so bad that something else needed to be done. They were giving her difficult to manage injected blood thinners to try to help break-up the clot and prevent any new ones from forming. This treatment seemed to have no beneficial effect.

My friend was discharged home with the plan that radiation would continue along with blood thinners and a pile of other difficult to manage medications  –  the radiation was to help reduce the tumor and hopefully allow the clot to dissolve “over time.”

That week, freak windstorms – micro-bursts-  took out electricity through large swaths of Charlottesville. My friend’s house was one of those without power for over a week in the sweltering heat. She could not be easily moved. By now, she was also on an oxygen tank which thankfully had battery backup power. She was, by now, pretty much confined to bed and couldn’t stay awake long enough to read or watch television anyway so she didn’t care about lights or power. We used damp cloths to keep her cool and pushed water to keep her hydrated and she seemed to be fine with the heat – she was old school and wasn’t crazy about air conditioning she said. She wanted to be in her own home.  Soon, she would need so much pain medication – Oxycodone and Roxynol in combination – that it was difficult to get her bowels to move and she had become impacted, another very uncomfortable situation. She could barely get out of the bed to get on the bedside commode to urinate and then, because she was so unstead,  only with the assistance of two of us. Even with the narcotics she was in excruciating pain and robbed of all dignity. Her hands shook so badly she could not administer her own meds so if no one was there to help, she went without her doses of painkillers. Or spilled most of it on her nightgown and sheets.

Still, the doctors wanted her to continue radiation. Finally, my friend said enough. She agreed to a “Do Not Rescuscitate” order and had the medical team refer her to hospice.

I stayed with her the day the nurse came to admit her to Hospice; she took her medical history and vital signs and explained what could be expected in the days to come.

At the end of that afternoon my friend was exhausted. Physically and emotionally, completely spent. As she sat back she asked me to rub her back which I did. She finally lay down and said, “I can rest now, can’t I?”  I stroked her head and assured her she could.

Corrine died two days later. Almost exactly 6 weeks after my partner predicted she would.

One last story, I’ll cut it short:

A friend from law school developed cancer on his tongue. A young man, with a new wife and young child. He had a growing law practice when his life was cut short. I won’t go into all the details but he tried valiantly to fight it. He lost.  Toward the end, as in the stories above, the oncologists and other traditional medical staff threw every mighty poison and potion they could at the cancer they were fighting.  That’s what we do in America. We fight heroically.  He also went down in immense pain and suffering —half his tongue cut away at first then the remainder of his tongue removed. More surgeries, chemo, radiation. Finally, he died after the excruciating pain as his bones cracked from the metastasizing cancer that grew in them. This is traumatic for friends and family to watch someone they love die this way feeling there is nothing they can do to alleviate their suffering.

We do not allow our dogs and cats to suffer this long and to die this badly.

Am I advocating euthanasia? Not at all. My point is that we have allowed “traditional” medicine to make decisions that do not serve their patients well. In fact, in some cases we have allowed them to conduct torture under license from the Board of Medicine.

Many, maybe most, patients don’t know that they can ask their doctors about alternative treatment plans. Palliative or comfort care. Holistic or natural treatments. Or that they can refuse treatments altogether. Hospice care, which, by the way, doesn’t mean you are actively dying. Hospice can come in  six months in advance. And if you don’t die in six months? Your doctor certifies you for another six months.  Many patients actually IMPROVE on hospice care and a few are actually discharged.

Most patients, by the time they are diagnosed with a fatal illness, are not in any position to absorb most of the very technical jargon and obtuse information that is thrown at them by medical professionals. Many of us simply are in a daze. We nod and go along with the treatment plan they set forth without our really grasping and understanding what the choices are. If any are even discussed.

As a cancer patient myself, I can tell you that ones ability to absorb any kind of information past the word “cancer” is greatly diminished.  I’m sure that the same holds true for those receiving treatment for heart disease, kidney failure, Lou Gehrigs disease or any of the many other things that are ultimately become our “cause of death”. (N.B. I have been cancer free for 3.5 years)

Medical professionals are trained to “cure” – to cut, to prescribe medication or chemo, to radiate, do physical or other therapies – even when it is clear that such treatmenst are without benefit or that their value is outweighed by the suffering and pain they cause. Medical professionals – yes, doctors – as well as pharmacies, ancillary treatment facilities and hospitals – are also billing hundreds of thousands of dollars for every test, image, treatment, lab test, consult, prescription and every follow up visit that goes along with them.

There is much broken with the healthcare system in the United States. But one thing that I see that is consistently broken and badly managed is the way that we die. And those astronomical medical bills? They don’t die with the patient. They go to his or her estate.

Polls consistently show that most people wish to die naturally in their own homes. Yet the vast majority of people in this country end up dying in an Emergency Room. or ICU or CCU with a nurse or resident pounding on their chest and another shoving a respirator tube down their throat, along the way breaking some of their frail and delicate teeth and ribs.  Many of the older people that die this way arrive by ambulance from the nursing home or assisted living where they believed they could pass quietly but that facility does not wish to have another “statistic” on their watch.

This kind of violent, tortuous death is not what I want. Most of the people I counsel do not want that kind of death.

As a patient you have rights. Residents in Assisted Livings and Nursing Facilities have rights. How do you protect them? You can help protect your healthcare decisions and see that your care plan goes as you want it to go only by making sure others know what your wishes are;  that can only be done effectively in writing. Get an Advanced Medical Directive – and if appropriate – have your lawyer include appropriate language to consent to a Do Not Resuscitate order (DNR).  Have a serious, open discussion with the person you appoint as your Healthcare Agent (Medical Power of Attorney). Ask questions of your physician or other providers, get an advocate if you can’t advocate for yourself (and most frail elderly and sick people are not able to do that for themselves)

Talk to your loved ones now – do not wait until a medical emergency is upon you!  You can “die well” – comfortable, free of pain, and with dignity and you can do so in your home, in a nursing facility, in a hospice house or if you prefer, in a hospital.

Don’t wait until you get sick to do this. Do it NOW!

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“Choosing” a Nursing Facility Part Le Deux: They tried to make me go to rehab but I said ‘no, no, no’

Patient wearing respirator
How we left mom at the nursing home last week….

Last week, I wrote about how it is that we really have very little to say in the matter when the decisions are made about taking our aging loved one to a nursing or rehabilitation center when they have a serious health issue arise.

In fact, there’s plenty we can say and do, it’s really about knowing in advance that you have plenty of choices, that you could and should ask many questions and offer input into the healthcare decisions of your loved one. Unfortunately for most of us, these decisions are made when both our loved one and we, as caregivers and family members, are completely depleted – physically, mentally and emotionally.

At the conclusion of the last segment, we had arrived at the “Health & RehabilitationCenter” and Mom had been admitted.  Let’s revisit the “Rehab” and see how Mom’s getting along shall we?

So let’s say, a week has passed. In that time, the staff of the nursing home – nurses, social workers, recreation/activities, physical, occupation and speech/language therapists, (pt, ot, slt) nutritionist or dietary and so on – have all had a chance to do their part on a “baseline” assessment which is done for each and every patient who goes to a Medicare/Medicaid qualified nursing facility (that would be most, not all, there are a very few exceptions). This is called the “MDS” assessment or “Minimum Data Set.”  Medicare and Medicaid keep careful track of every patient and it is from these assessments that

a)      Billing is done for Medicaid

b)      “Quality Measures” are assessed by Medicare.

The first is pretty obvious – Medicaid pays for certain things at certain rates and MDS codes tell them what to reimburse.

The second might seem a bit more mysterious until you understand that nursing home staff are required to continuously update their assessments so that changes are documented for every resident at regular intervals. For instance, if a patient arrives and on their initial MDS assessment, they report no pressure ulcers (bed sores) and 90 days later, the same resident now has bed sores, there has been an decline in the quality of care.  If patients report chronic pain and classify it as a “number 2” on a scale of 1-10, but it gets worse, say the patient later takes a stronger painkiller and self-reports his pain is now a “5” – that too is reported. Things like Urinary Tract Infections (UTI), occurrences of Depression and other things are also carefully monitored. This set of statistics forms a picture of the “quality” of the care patients are receiving at any given facility.

This information is also readily available, to the public, online – for free! You can access it by using the 5-Star Quality Rating System provided by the Center for Medicare/caid Services (CMS).  There’s a very readable set of documentation available on what it is and how best to use the system (click on the link). You can search for data on a particular facility or compare several facilities at the Five Star Rating System. (click on the link). You can also see reports on staffing levels and recent inspection reports (“surveys” in nursing care parlance) including the actual reports of problems as cited by the surveyors.

So your Mom has now been “MDS” assessed and from that a “Care Plan” has been designed in conjunction with her care team.  First up at bat are likely to be the PT/OT/ST team who will try to get Mom into as much therapy as possible. She will have been assessed and orders written by her physician to try to get Mom to the “least restrictive alternative” for her care – that means discharged home, discharged to another facility such as an Assisted Living or to a “unskilled” nursing facility.

Lets say Mom has had a stroke and is “hemispherically” (one side, lets say left) impaired. She has trouble walking, talking, seeing, swallowing and doing most everything that engages her motor system on the left side. She also suffers from some “aphasia”  – that’s a condition where, due to the damage caused by a stroke (in this case) the person  may make mistakes in the words they use, or perhaps using the wrong sounds in a word, choosing the wrong word altogether, or putting words together incorrectly. Its a problem not of motor skill, but of the brain’s ability to handle language and communication. Your mom’s case is not bad and the SLT thinks they can correct it with some intensive therapy.

So your mother’s days are full up with intensive therapy to help her physically – to strengthen the weakened and impaired left side, and to work on balance; in Occupational Therapy – to help her figure out new ways to do tasks that she used to do without a thought: putting on her socks & shoes, getting things down from the pantry shelf, dressing, bathing and getting on and off the toilet by herself. Then hours of very intensive therapy to improve her swallowing and language. At the end of each day she is exhausted and discouraged. When you come to visit at dinner time she is depressed and irritable. She hates the semi-liquid food she’s given because of her impared with swallowing. Her roommate (she can’t afford the upcharges for a private room) watches TV all day and all night at full volume and with the lights on. When she finally does fall asleep, she is awakened by the constant noise from the nurses station down the hall or someone coming to draw blood or check on her roommate. You try to cheer her up by reminding her “its only temporary Mom, you’ll be going home soon.”

Nursing home mom
Mom’s a bit irritable, hopeless and depessed now.

Won’t she?

Well she has 100 day right? That’s what the hospital caseworker said, “Medicare will pay for Rehab for up to 100 days.”  Yes, that’s what they said. Note that it is “up to” 100 days. And she didn’t say that Medicare would pay for ALL the charges. Indeed, right around day 20 you will start hearing the Administration of the facility start making noises about “discharge planning.”  What?  Mom is ready to come home?  Well, not exactly. They don’t necessarily mean discharging Mom home. They mean discharge from therapy, or more accurately, discharge from “Skilled Nursing.”  Again you say, “what?!”

There’s a fly in the Medicare ointment. And it has little to do with your mom.  It has to do with Medicare’s reimbursement schedule. What they actually pay – at 100% reimbursement – is the first 20 days  of rehab. After days 1-20, you pay a co-pay (depending on whether you have traditional Medicare, or an Advantage plan – all of these are moving targets, but basically it comes out in the end).  On days 21-100 you’ll pay $144.50 “co-pay” each day and Medicare picks up the rest.

(By the way, if you find yourself in the hospital in advance of such a situation, one critical question to ask is if you’ve been “admitted” to the hospital as an inpatient. Well of course you were admitted! You were there for 4 days!  Except, today, hospitals routinely bring patients in on “observation” and in fact, unbeknownst to most,  they are not admitted as inpatients.  To go from a hospital to a skilled nursing, or rehab facility and have Medicare pay for it, you must have been admitted for a three inpatient day stay, not including the day you leave. What if you were on ‘observation’ on day one, stayed two more days as an inpatient and left on the fourth? No, Medicare won’t pay for your rehab because you only had a two day inpatient hospital stay. Sneaky huh?)

Most nursing facilities know perfectly well that most of us can’t afford to self pay from our own pockets for rehab. So, ready or not, they’ll begin making noises about “de-certifying” Mom from rehab because they don’t believe she can pay. Will they ask you about it? No. If there’s no second payor insurance (e.g. a private or supplemental policy that picks up where Medicare leaves off) they will start making noises such as, “your mom is no longer getting better” or “your mom doesn’t seem to be motivated in her therapy anymore” and the next thing you know you’re either frantically making plans to put mom elsewhere – your house, an assisted living, home with a home health agency coming in – or heaving a huge sigh of relief when the social worker at the “Health and Rehab” Facility offers you the option of simply moving mom to an “unskilled bed.”  There she’ll be taken care just as she has been all along (for better or worse!) but without all the pressures to participate in therapy to get her back on her feet. Indeed – she might be very hard pressed to get any therapy at all. Often we hear about “restorative therapy” that is meant to keep residents from losing whatever physical gains they’ve made. (notice they are now “residents,” no longer “patients”). Generally, that will consist of a Certified Nursing Assistant (CNA) walking with a resident and perhaps doing some mobility work with them (manipulating arms in legs in bed or shower).

Mom has now gone from a temporary “Health and Rehabilitation” patient, to a full-time, long term care resident.  And if you think she was unhappy before, wait until you see what starts happening next!

Tune in next week, same time, same place….. for Part III – “Choosing” a Nursing Home

 

 

 

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“Choosing” a Nursing Home? Bwah-ha-ha-ha-ha!

Lately, I seem to see lots of articles, blog posts and general hot air on “choosing a nursing home.”

hotel check in is not a nursing home
Expectations about checking in to “Rehabilitation Facility”

Bad news for most of you. Very unlikely you’ll get much choice in the matter. I don’t recall ever seeing people walking through the front door of the lobby, followed by a bellcap with their bags as they “check in” to a nursing facility.

No. Here’s how it generally happens:

An elder person has some kind of serious medical issue that lands them in the hospital: a stroke, a fall that breaks a hip, a bout of pneumonia, major surgical procedure or any number of other common but very worrisome things.  When the crisis is past, there remains a period of rest, recuperation and typically, rehab.

By this time, if they have family, they have all gathered round and different people have different ideas about how to care for mom or dad. And what I call the “sandbox issues” have begun. Brother Tom thinks mom should come home with him where his wife (who mother doesn’t much care for) will take care of her til she’s back on her feet. Sister Sue thinks Mom should go to rehab then an Assisted or Independent Living Facility (ALF or ILF) because she obviously can not take care of herself anymore. Baby sister Cindy thinks with a short stay at rehab Mom will be her old self again and can safely go home.  They begin to argue amongst themselves and all the ancient tensions of “mom always loved you more” began to re-surface.  I can assure you that none of this is helping Mom to recuperate.

In the meantime, in some back office, a hospital administrator is squawking at the discharge planner (another name for a caseworker or social worker) that she needs that bed. That beds got to be emptied. Why? Because Medicare will only pay for ‘x’ number of days following (surgery, stroke, whatever) and her x number of days are about up. It doesn’t matter that they aren’t managing her pain well or that she’s not healing as quickly as another might. The formula says x days.  And ‘x’ days is going to be all she gets. (They seem to assume that no one can afford to pay for hospital care privately. And that’s true, most of us can’t, which is why we have insurance)

So, here comes the discharge planner into the wasp’s nest that Mom’s room has become with all the siblings gathered round.  Discharge planner comes armed with a pile of paper including one that lists all the home health, skilled nursing/rehab (NFs) and even hospice agencies in a five county area. By giving you this incomprehensible list, she can say she has informed you of your choices. She tells you that she’s found an available bed for your mom in Acme Rehab and that discharge to Acme is scheduled for tomorrow as soon as the doctor writes the order.

Kids are non-plussed and immediately set aside their ideas (for the time being until “I-told-you-so time comes around) and begin to organize around the decisions made for them all (with little or no consultation with Mom). Discharge planner tells you about the rehabilitation professionals and equipment in the Acme Rehab and how great it is and how quickly Mom will be back on her feet.  No one asks any questions, or goes to visit Acme. They start packing up Mom’s nighties and toothbrush preparing for the glorious migration to rehab tomorrow.

In the morning, after a long wait for the hospitalist to make rounds and write the discharge papers, nursing staff to do their thing, you have Mom put on a gurney and transferred by medical transport (another name for an ambulance) to Acme Rehab.  In the meantime, because you think you’re leaving any minute, Mom misses bath, breakfast & medication.

When you arrive at Acme, Mom is wheeled into the facility still strapped to the gurney.

Patient wearing respirator
What mom will probably look like arriving at the nursing facility… ooops “health and rehabilitation center”

All she sees on the way in the building is the ceiling and light fixtures and the chin of the guy who hasn’t shaved for several days and the overhang of his beer gut while pushing her down a rather smelly hallway. Food smells and um, worse smells, assail their forward progress. Medicine carts, food carts, laundry carts, block the halls or rattle past. The gurney takes a sharp turn past a nurse’s station where several people in scrubs are talking on the phone, writing in charts, dialing the fax machine and basically impervious to the person flying by on the gurney.

You, in the meantime, have been ushered into the business office or admissions and are seated at a table across from a new face. There’s a stack of paper in front of them and a couple of pens. This person smiles ingratiatingly, turns the stack to face you and pushes it across toward you along with one of the pens. He or she starts flipping through the pages and ‘explaining’ at warp speed what they are. Periodically they put the pen in your hand to have you sign something. And, obedient child that you have momentarily reverted to, you acquiesce.

Meanwhile, in your head, all you’re hearing is the sound like Charlie Brown’s teacher in the cartoons “Mwah-mwah… mwah mwah, mwah mwah. Ok? “  “Sure, yeah, okay” as you sign the last page.  Also running through your mind is, “Where have they taken Mom?” “Is she going to be okay?” “She didn’t eat anything this morning” “Did we get the discharge orders from the hospital?”I have to call Mom’s brother Ike and let him known she’s here”  “Have we made the right decision” (when you should be asking, “Did WE make a decision at all?”

Of course, if you heard anything at all from the admissions person or saw anything that you signed, you are extremely unlikely to remember it even a few hours later. And where did you put that copy they gave you?

How do I know? Because, when family members come to me and ask me to represent them and I look over the contract they brought with them,  I ask them, “do you know you agreed to ….?  (pick any number of things). They give me shocked look and say “I never….?” And I hand them the contract, point to their signature and confirm that it’s theirs. No one remembers that they agreed to a whole host of things – as just a few example, they contracted  to:

  • waive      the right to sue the facility in court.
  • use      arbitration instead with the nursing facility’s chosen arbitrator;
  • to be “R.P.”      or “Responsible Party”
  • as RP you      agree to pay the bill if Mom can’t (this is not legal, not under Federal      Law or under Virginia Law and you can not agree to it)

Could this have been avoided?

Yes, and more importantly, it could have been avoided at several points:

1)      They discharge planner doesn’t decide where your Mom goes. Your Mom does. Perhaps with your assistance. She also has the right to refuse “the first bed available” and the right to weigh many options. Handing you the list of agencies and options only technically meets the mandate caseworkers have to inform patients of all the options before them. Mom could have gone home with an order for home health and physical therapy. Or she could have gone to outpatient therapy, or she could have gone to any number of facilities.

2)      You do not have to vacate a hospital room because a discharge planner says so. You have to be prepared to pay for it or arrange for payment, but before making a decision, someone should have visited the nursing/rehab center to make sure it was up to snuff. You can check out nursing facilities through Medicare’s “5 Star Rating System” first to narrow down the acceptable options. Since Medicare regulates nursing homes, they collect extremely detailed data, including staffing levels, quality measures and inspection reports – all of which you can look at online. They put it in pretty accessible form to make that easier. (see  http://www.medicare.gov/nursinghomecompare)

3)      Upon arrival at any facility, the emphasis should be upon getting Mom settled into her new surroundings. She is probably scared, in pain and unsure of what to expect next. All the paperwork and contracts can wait. And the contract does NOT need to be signed right now by anyone, not you, not your mom.  In fact, I often tell caregivers (adult children, Powers of Attorney etc.) not to sign the contract at all. Mom can sign it and it can be signed later after someone that is in full possession of their senses has had an opportunity to look it over. You, as caregiver are stressed, tired and not clear on what’s happening. Your mother is sick, medicated and possibly suffering from mild dementia or psychosis (both can be caused on a temporary basis by long hospital stays). Neither of you is in top form to sign an important legal document that is likely to have very serious consequences.

Is there more? Oh there is much more. Stay tuned for Choosing a Nursing Home. Part Le Deux

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New Year – New Committment to Improving Long Term Care

I long ago stopped making impossible New Year’s resolutions.  I quit smoking when I was ready to quit (I think it was in September, no New Years involved); I’ve never succeeded at dieting at any time of year. Ditto exercise though I do swim regularly in the summer – still nothing to do with New Year’s resolve.  But I am recommitting myself to something: improving the state of long term care in our community

When I was preparing to open my Elder Law practice, one of the things I did to get familiar with the issues elders face and the regulatory schemes that are associated with them, was to volunteer with our local “Ombudsman” program. In the Jefferson Planning District (5 counties: Albemarle/Charlottesville, Nelson, Fluvanna, Louisa and Greene), JABA is responsible for providing Ombudsmen in local nursing and Assisted Living facilities. You can read more about the federally mandated Ombudsman program here.

As a volunteer ombudsman, I was assigned to a local nursing home to visit with residents and talk to them about questions, concerns, problems or any issues they might have with the facility where they resided. As a neutral 3rd party we could try to help advocate and intercede on their behalf, often anonymously so that the staff could not “retaliate” against the patient or resident who “complained” about their care. In that capacity I met many residents and their family members as well as a large variety of the staff from housekeepers to executive directors. We solved problems whereever the problem lay.

But many problems were so intractable that there seemed to be no solution. Confounding and infuriating. Some residents seemed broken, miserable and unable to be helped. Many were depressed, some were suicidal.

One of those residents died earlier this year.  I’m writing this blog post to honor her.

In my practice area (elder law) I lose clients all the time. Its to be expected when when you deal with the elderly. I always grieve for their passing, but I generally take it in stride as the natural order of things.. But Anita was different. She was not old. Well, not compared to most of my clients or the other residents of the nursing home.

brain trauma
Residents of LTC facilities with traumatic brain injuries – are they properly treated?

Anita was in her late fifties, perhaps early sixties. Under normal circumstances one doesn’t find many people that young in nursing homes. But Anita was had suffered a traumatic brain injury some years earlier. After being in a coma for several months, she awoke to find herself on life support. Her condition improved and after she had undergone many rounds of reconstructive surgery, her horrific automobile accident left her alive, but unable to care for herself.By the time I met Anita, she had been in a nursing home for several years. When I first met her, she was able to wheel herself about in a wheelchair. By late spring of this year (almost two years later) she could barely move and needed to be lifted from bed to chair with a Hoyer lift (sort of a person-sized block and tackle used by nursing staff to save their backs from injury in hoisting patients who cannot transfer themselves in an out of beds, chairs, toilets etc.) Anita required the aid of two people to assist her on and off the toilet or was left in adult diapers. Her looks had been destroyed in the accident despite reconstructive surgery; almost all her teeth had had been removed as well. Her hair was either a tangle of uncombed knots, or cut so short she resembled Sinead O’Connor. She had barely a shred of dignity left and no desire to live.  Perhaps the most heart breaking aspect of Anita’s story was when I learned that before her accident, Anita had worked a registered nurse. She was extremely smart and capable. She worked in ICU and knew all about trauma victims. She knew what good nursing care was supposed to be. And she knew she was never going to get it in the situation she was in.

I discovered that despite her injury, Anita’s mind was still plenty active. And she had a very sharp – if dark – wit. Regardless of the motor skill deficit and behavioral issues, she liked to read, especially science fiction. She also became an avid member of the “Science Club” which we created for another severely brain injured resident (this one by stroke) who’s scientific mind was clearly genius level (he was a nuclear engineer in a previous life). Anita kept right up with him.  Otherwise her days were a dull hum of endless bingo and relentless daytime TV as it is in most nursing homes.

Anita had many issues related to her brain injury – some of them behavioral. Many people don’t know that brain injuries – from trauma, stroke or other reasons – can cause severe emotional, psychological and behavioral changes in addition to physical impairments.

Bloomberg News service recently published a powerful expose on the care of brain injured individuals in nursing homes and it is well worth a read. The article is Brain-Injured in Nursing Homes Without Care Giffords Had. Click on the link to read it.

We tried desperately to get Anita some much needed physical, speech, and nutritional therapy. We tried wheelchair yoga and other alternatives. The staff was willing to make an effort but the universe and Medicaid were not.  The director of therapy told me plainly that they were not equipped to deal with brain trauma-injured patients who require much more specialized care than the average nursing home can accomodate.

I’m not criticizing the nursing home (although I think it and most others can do far better than they do with what they have). I understand that they really are not equipped to deal with brain injured residents’ needs in the way that they should be addressed.   This is a giant gap in our healthcare structure. And another ugly stain on our national health system.

This is not relevant only to brain injuries. I had occasion to represent a family earlier this year with a severely disabled adult son.  His disability was not a brain injury but a genetic condition with truly catostrophic symptoms that could not be managed at home.  He too was being warehoused in a facility not equipped to deal with his (admittedly) very demanding needs. Indeed, the only available solution was to spring him from a state psychiatric hospital and to admit him to a nursing home!  He is still with us and, because he is geographically closer to people who can check on him and ensure that he is getting care that is up to snuff, his quality of life has improved somewhat.

I would like to honor Anita  who died this past summer. Anita and all the other residents of long term care facilities that we lost prematurely in 2012. As I go into 2013, in her memory, I rededicate myself  to continue to fight for improved long term care. Not just for seniors, but across the spectrum of our community.

I hope you will take note of the conditions we are warehousing these people in – our brothers, sisters, mothers and fathers – and put your shoulder to the wheel too.

Happy New Year to all.

 

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You Have a Right to Make Health Provider Choices

It’s Christmas eve and I’ve just been catching up on some back reading, including our local weekly papers, The Hook and Cville Weekly.   In the latter publication, there was a reference to an article in the November 27 issue regarding hospice. I noted in the Letter to the Editor that only Hospice of the Piedmont was mentioned. The article, Long journey home: A family’s experience with hospice care, is quite lengthy. And it is perhaps one of the best articles I’ve ever read on Hospice care. *

There is no doubt that hospice does wonderful work. What concerned me about the article was that they limited themselves to people having experience with only a single hospice agency – Piedmont. They interviewed workers from Piedmont, doctors from Piedmont and families served by Piedmont. One begins to wonder if this were a paid advertisement or editorial content!

In fact there are several hospice agencies in this area that patients and their families might choose from. In addition to Piedmont, Legacy Hospice is a dedicated hospicae agency. In the Waynesboro/Staunton area, Augusta Medical offers hospice service.  Also, most home health agencies, Asera, Interim, Medi-home health and others all offer hospice care. Some nursing facilities have their own hospice care units.

My beef is not with Piedmont. Not at all. My problem is that the article perpetrates a a different problem. That is, that many patients and families do not realize that they have choices regarding care providers. More importantly, they have the RIGHT to be informed of the choices available.  So for example, if you are a patient at Augusta Medical Center, and you are preparing to be discharged home and need home health care, AMC is required to advise you that you have choices among several home health agencies – which may include AMC’s own home health care (or hospice) agency but AMC may not limit a patients’ choices by failing to inform them of the available providers.  Typically, hospitals simply provide a bewilderingly long printed  list of healthcare providers. Either overtly or covertly, discharge planners and social workers are instructed to direct patients to a particular agency – usually one affiliated with the same hospital or its corporate entity.

This is wrong.

Patients have the right to make choices in their care planning. There are costs to think of and social issues that may impact one’s choices. For example, lets say you live in Stuart’s Draft (“over the mountain”) and your father has been transported to UVa. Medical Center after a serious stroke. After the initial crisis is over, UVa begins to make plans to discharge your father to a rehab center since he has lost the ability to walk and his speech and ability to swallow are severely impaired from the stroke. The discharge planner tells you that the first available bed is at Trinity Mission in Charlottesville. Very likely, you are unfamiliar with Trinity Mission and don’t even know where it is. But you expect the discharge planner – who seems very nice and caring – to take care of things for you. No doubt they have the best of intentions.  However, Trinity Mission is a nursing home north of Charlottesville and not easily accessible to you, since you will have to drive 40 minutes each way or more to see your father.

There are plenty of nursing and rehab facilities in the Waynesboro/Staunton area that would be closer and far more accessible to you. Placement in one of those facilities means you could drive yourself and your mother to see dad on a daily basis and you could both help encourage him to do his therapy, eat, talk, visit, walk and just generally spend time with him to keep his spirits up.  However, if you don’t know that you have choices in your care providers, you will simply assume that the UVa discharge planner “knows best” and simply acquiesce.

Soon, your father is in a nursing home that you, your mother, friends and other family cannot easily get to; father is alone most of the time; gets dispirited, lonely and depressed; he begins to refuse food, only reluctantly participates in any activities including physical, occupational and speech therapy. After a time, father has deteriorated to the point where he is unlikely to ever come home since he requires 24/7 care.

The story doesn’t have to end that way. You have choices. You can insist that the discharge planner find a bed in a facility closer to home. You, your mother, church members, co-workers and others can visit your dad regularly. His spirits are buoyed by the interaction, encouragement and good wishes he receives. He works hard to go home and ultimately regains much of the ability he lost due to the stroke so that he can go home even if it means having some additional care in the home.

Again, you have choices. The hospitals and healthcare providers are required to tell you what they are. But you should also ask. Don’t rely on others to help you make informed choices.

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*In the interest of full disclosure, I have to disclose that my partner is a Nurse-Case-Manager for another hospice agency here in town (not Piedmont). She has no ownership or profit interest however, she is a salaried employee.

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Potentially Significant Change to Medicare Benefits

Your Medicare Benefits may be changing — for the better!

I’ve been reading about a case in Vermont, a class action suit, that is poised for a settlement agreement (awaits judicial ok) that would significantly alter the benefits available under Medicare for skilled care and therapy services. For the better in my opinion.  I still have some questions about how this would apply to patients in skilled care and unskilled care facilities. Still doing some research on that. I hope to have a more detailed post soon once those ambiguities have been cleared up.

In the mean time however, if you have been denied coverage for skilled care or therapeutic services — or have a loved one that has (or will soon be “de-certified”) you should be following this development:

SETTLEMENT EASES RULES FOR SOME MEDICARE PATIENTS (NYimes)

… stay tuned to this blog for more details

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BREAKING: New “Nursing Home Compare” System released by Medicare.gov

This has always been a useful tool, but it has recently be substantially upgraded and now provides much better data in easily navigatible screens. You can search for nursing facilities by any number of means, state, county, within a specific zip code or by name. You can compare several at a glance and you can “drill down” to very detailed information INCLUDING the most recent survey and inspection reports! Extremely useful tool, Check it out here: http://www.medicare.gov/nursinghomecompare/search.aspx

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ObamaCare and Medicare — what’s the REAL Impact?

Medicare
Medicare — as we know it

Now that the dust is beginning settle, and hopefully, some of the political posturing will subside, its time to look at what is actually in “Obamacare” (or, more officially, the Affordable Care Act) Most of us in the field of Elder Law are concentrating our energies on what the law does with regard to Medicare. Way back in February of 2011, then-adminstraor of CMS (Centers for Medicaid/care) Dr. Donald M. Berwick testified before congress as to what the implementation of the law would do and gave special attention to Medicare and the improvements we could expect.  Here’s a transcript of Dr. Berwick’s testimony. Very readable. I recommend it!

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