Delighted to announce that I am now a member in good standing in the National Academy of Elder Law Attorneys (NAELA) and also in the Virginia Chapter (VAELA).
Among other things, my acceptance into NAELA provides me with the premiere resources to stay abreast of the most recent developments in Elder Law. That means I can continue to be your “local” expert in these fast changing times.
You can visit NAELA’s website — there are many resources there non-member, non-lawyers) by clicking here.
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.
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!
What is “Respite Care?” Home Care. Health Care. Nursing Care. Most of us can understand these terms.
But what is “Respite” Care? Some new marketing buzz word? Well, to be honest, Respite Care is partly a marketing buzzword, but there is some substance at the core. Because caregiver burnout is real, and respite care is how to prevent it from overtaking you.
I just got back from my own vacation so this is on my mind as I begin to “re-enter” my day-to-day routine.
We take vacations to rest, to recharge our batteries. Even if we take a very active vacation – kayaking, mountain biking, hiking, skiing or just lounging at a beach or pool (that’s my style!) – it is the mental and physical break with our normal routine that allows us to come back refreshed and ready to fight the good fight again.
For caregivers – especially when family based– it is rare to get a break from an often grueling routine. The caregiver’s role takes a toll mentally, physically – even spiritually. And often the need for care is 24/7, 365 days a year, holidays, and weekends, year after year.
Caregiver stress – and Caregiver Burnout – is real. These conditions can have very negative side effects. They can lead to neglect or even abuse of the one needing care; they can lead to physical and mental decline or breakdown for the caregiver.
This is the situation that Respite Care is meant to prevent.
It means exactly what it sounds like, but it is for the caregiver, not the one for whom they are caring. Caregivers need and deserve a break. But how is that to be accomplished? You can’t just put out a bowl of fresh water, some dry food, clean litter pan and leave for a few days.
There are many solutions to this problem. At the simplest level, other family members can (and should) step in from time to time to assist a primary caregiver. Primary caregivers are frequently equally frail as their spouse and themselves may be in precarious health too. Adult children should be watchful for this and be willing to assist or take over if they can. We, as children, are so accustomed to Mom in her accustomed caregiver role that we lose sight of the fact that not only can she not care for Dad, she may not even be able to care for herself adequately anymore. Not without help anyway.
Alternate, unpaid family members are not always possible or practical even on a temporary basis. Sometimes there are no alternative family caregivers. No children perhaps, or difficulties have led to estrangement. Or the one needing care has outlived all the possible or willing family members.
A second possibility is to hire a paid caregiver. Most agencies now offer “respite care” services. You can hire an agency “sitter” for a few days (or even hours) while the primary caregiver takes a break – go shopping, go fishing, have lunch with the girls, play a round of golf, go to religious services, or just have some peace and quiet to read a book without the constant demands of a frail, sick or demanding elderly person.
A third solution is Adult Day Care. Most Senior Centers (Waynesboro, Charlottesville) and Agencies on Aging (in Charlottesville/Jefferson District, that’s JABA in the Shenandoah Valley, that’s VPAS ) offer programs during the day where elderly people can go and have a meal, visit with others, take part in activities at whatever level their physical health allows. While in the care of the Day Care Provider (some have transportation and even pick up or drop off the one in need of care, or, in our area, transportation arrangements can be made through JAUNT (434) 296-3184) While there, the caregiver can take the entire morning to clean the house, work in the garden, put their feet up and watch “Ellen,” have a second cup of coffee and drink it while its still warm. Or have a whole afternoon free from having to prepare a hot meal and feed someone. Sit down with a bag of candy and watch Judge Judy without interruption. Or get on the phone and talk with a friend or someone else for a good long time. Take an uninterrupted nap. Read the newspaper front-page to the comics without having to get up 10 times.
Admit it, sounds good just to have a break for a morning or afternoon doesn’t it?
So…. How would you like the idea of getting an entire week’s respite? Two?
Its possible. Many Nursing and Assisted Living facilities now offer Respite Care. Have Mom or Dad (or grandma or pa, or Uncle Joe or Aunt Jane?) visit a nursing facility – just for a week. They get a break from their normal routine too and you get a solid vacation. They’ll get all their meals, medication, assistance with baths and getting dressed and maybe a little exercise (at the PT gym?) They may get some intellectual stimulus of new faces and places. Take part in some activities provided by the Recreation Department. They might even enjoy any of the many religious, musical, teen volunteers, pet handlers or myriad other groups that visit such facilities on a regular basis.
Honestly, some of these solutions, especially the last, are likely to set you back a few bucks. (though Adult Day Care are usually pretty cheap as they are often subsidized in whole or in part by gifts, grants and government).
However, even if you really are hard up and having trouble making ends meet, there may be a respite solution for you too. In Virginia, contact the county or social services offices (the folks that administer Medicaid) where you live and ask about Elderly or Disabled with Consumer Direction Waiver” (I know, it’s a mouthful! They’ll know it as the EDCD Waiver). Most states will have the same or similar programs. Among the many things they may be able to assist you with is Respite Care.
My own vacation was short. 5 days, and 4 nights. Two days driving. But the beach – even with my frail and elderly mother (she’s 83) – was enough to recharge my batteries AND enough to give my mother’s regular caregiver a break. And while Mom has a hard time getting down to the beach, she delighted in visiting with all my brother’s, sisters-in-law and the grandkids.
It’s amazing how things look brighter and your muscles and joints unwind when you finally unplug.
It’s been more than a week, I know. Things got a bit busy and since I am chief cook, bottle washer and everything else around this office, I have to set some priorities. Blogging is way down the list when clients are demanding my attention. Would you want it any other way if you were my client?
Well, let’s return and see how Mom has fared in the nursing home shall we? When I left off in my last post, Mom had just been “de-certified” from Medicare and moved to “unskilled” nursing bed. She is no longer receiving intensive therapy.
As the days and weeks go by, Mom becomes more depressed and hopeless. She seems dull and lifeless. Even her hair is limp and lifeless. When you visit she is often still in bed even though it’s the middle of the day. She’s not had a bath or brushed her teeth even. When you visit she is both irritable and angry, or cries and begs you to take her home. Visits become something you dread. More and more your visits are shorter and farther between.
One night, you get a phone call from the nursing home. Mom has taken a fall and hit her head. They think she’s okay, but it’s the nursing home’s policy that anytime someone falls and no one sees it happen they must automatically transport them to the E.R. to have them checked out. At the time of the accident, your mother was in pain, confused and panicked. As the EMT’s arrived and tried to put her on a stretcher and into the ambulance, she started to shout and became combatative. In order to safely transport her, the EMT’s needed to calm her down to prevent her from hurting herself (or them) so she is given a powerful tranquilizer and immobilized onto a stretcher.
Before you are able to arrive at the hospital, Mom is taken for an MRI. She is placed on a moving table and strapped down, then she is slid into a large cylindrical machine for 45 minutes. The machine makes all manner of very loud clanking, buzzing and ringing sounds while disembodied voices tell her to lie perfectly still. She comes out dazed, completely disoriented and not sure where she is or what is happening. It’s now 3 a.m. and the doctor decides to keep her “for observation.” They give her a drug that is meant to help her regain herself, an antipsychotic called Seroquel. It also acts as a sedative and knocks her out for the night.
The next morning she awakes and you are at her bedside. She has little or no recollection of what happened or why she is there. The doctor says she may have a concussion and wants to keep her for another day. She complains of pain in her hip and has severe bruising on her face. The last thing she remembers is at the nursing facility. She recalls ringing the call bell repeatedly for assistance to go to the bathroom. She says that no one ever came and her need became so urgent that she decided to get up herself rather than wet the bed. She thinks she may have had an accident on the floor and may have slipped on the wet floor. She must have fallen then. She recalls nothing else.
Meanwhile, back at the nursing home, the business office tells you that if your mother doesn’t pay for her bed, that is, put a “bed hold” on it, they will discharge her. With mother in the hospital again, your boss complaining that you’re taking too much time off, and the kids needing picked up from school, you can’t worry about this and set that aside so you concentrate on the urgent needs like the kids and mom in the hospital.
As it turns out, Mom has only bruised her hip and does have a concussion but its mild. However, the neurologist who treated her after the MRI of her head has also diagnosed her with vascular dementia (brought on by mini-strokes) which, while relatively mild now, will get worse over time. She ends up staying one more night in the hospital under observation.
The discharge planner comes around the next morning and starts discussing plans about where to send mom now. Come to find out that her bed at the nursing facility is now gone. Her belongings have been packed up and stored. She was “discharged” from the nursing facility to the hospital. However, the hospital never “admitted” Mom as an inpatient. She was only there on observation.
While this may seem to be mere bureaucratic technicalities, they have very significant consequences.
To discharge your mother to a nursing facility now means that she will NOT be eligible for Medicare for any rehab because she did not have the requisite 3 night inpatient stay she was merely there on observation.. Mother’s resources are nearly tapped out for privately paying for long term care. She has no long term care insurance. No Veterans or other benefits. That leaves very few options. In such cases, the only choice may be to find a “Medicaid” bed.
Medicaid rates (the rate at which Medicaid reimburses a nursing home) are substantially lower than the private pay rates. If a person comes into a nursing facility while eligible for Medicare treatment, the reimbursement rates are higher. But if a person has fewer resources and will be quickly dependent on Medicaid – public assistance – most nursing homes are reluctant to take them.
Nursing homes typically want to bill every penny they can to Medicare or other 3rd party source (supplemental, long term care insurance etc.) and/or if they can, they want the person to privately pay (out of their own pocket). These sources are usually quickly depleted by the monthly rates which average about $7,000 a month.
In your mother’s case, she used Medicare in her initial admission following the stroke, thereafter, she paid from her own funds but now that money is almost gone. Had she stayed where she was, she would simply have depleted her resources and an application for Medicaid would have been filed and she would have stayed right where she was. But that didn’t happen – instead she was discharged from that nursing facility.
The hospital’s discharge planner begins seeking a facility that will accept a Medicaid resident from the outset – no private pay, no Medicare billing. Almost all nursing homes are “dually certified” – that is, they accept Medicare and Medicaid patients. However, many of them limit the number of beds available to Medicaid patients. There is a therefore a shortage of certified Medicaid beds and the need is great.
But the discharge planner manages to find a bed for your mother after you indicate you can pay their private pay rate for two more months. So off mother goes to a new nursing facility. She is discharged from the hospital (to which she was never actually admitted!) and transported to the new facility.
Along with the little ditty bag of stuff from the hospital she carries is a discharge order and a list of medications. The med list now includes some things that were not on her regular regimen before. Among them are the antipsychotic medication, Seroquel. You notice that mom is much more agreeable, calmer and sleeps a lot more. That seems helpful to you. What no one notices is that Seroquel – and most of the other medications of this sort – carries a specific “black box” warnings about use in older adults. The warning reads something like this:
Elderly patients with dementia-related psychosis treated with antipsychotic drugs are at an increased risk of death. Seroquel is not approved for the treatment of patients with dementia-related psychosis
There are many potential negative side effects listed as well. Among them, are the increased risk for falls.
However, in a nursing home, the drugs are not administered in the same form we get them from retail pharmacies. Nurses never see the box or bottle the drugs come in, or the sheaf of fliers that come with them. Nursing facilities get “bubbled paks” for each patient from their own pharmacy or contracted pharmacy. So they never see the warnings.
The new nursing home is older, the carpet worn and dingy, the furniture nicked and upholstery faded. The walls are painted a dull blue and stained and marked up. It’s noisy, smelly and the only activity that is available on a regular basis is a big tv blaring very old movies and bingo every afternoon. The hot food is served on ice cold dishes and the cold food — iceberg lettuce masquerading as salad, jello, sherbet, cottage cheese and the like — is served on steaming hot dishes. Everything is stewed or looks like its stewed. All of the food is either over-salted or completely tasteless.
Mom is very complacent though. She sleeps a lot but doesn’t complain much. She has a lot pain so whenever she asks for it, they give her a narcotic painkiller for which her attending physician has written a PRN order or “as needed.” She is also labeled “high risk for fall” so she is no longer allowed to stand or try to walk and is restricted to a wheel chair and completely dependant on nurses aids to transfer her from bed to chair or chair to toilet. Her lack of activity and complacency about the food means she as begun to put on weight. She eats and snacks on sweets at every opportunity. To please her, you bring in more such treats when you visit.
The nursing facility is trying to turn a profit. They are limited by the fact that so many of their residents are Medicaid payors only. So, even more than any other nursing facility, such nursing homes attempt to make money by reducing expenses. The biggest expense is staff. They keep staffing levels so low that only the barest of care is able to be provided.
Lately, your mom has been having “accidents.” You mom is not incontinent. She can control her bladder fine but, because she must wait for aids to assist her to get to the toilet on time, she is wetting herself and the bed. Soon she is labeled “incontinent.” Rather than get her on the toilet on a regular interval, and unwilling to regularly change her and the bed, the aids now put her in an adult diaper day and night. Your Mom has become very docile and complacent on the drugs therefore they have no sense of urgency to see to her, she rarely rings the call bell anymore and never yells as she used to – she sometimes lays in a wet diaper for hours.
A year has come and gone since Mom first had her stroke. Mother’s Day is coming. You decide it would be a good idea to take Mom out for an outing, have a change of scenery, get some fresh springtime air. When the appointed Sunday arrives, you stop for some flowers at the grocery store and go to the nursing home early to help get Mom up and dressed. The aid has arrived to get her out of her diaper while you choose something nice to dress her in. Together, you and the aid turn her to sit her up and put her clothes on and to your horror you see large, gaping, raw sore on her tailbone. It is the size of coffee coaster, red and angry looking, seeping fluid.
Thanks to the lack of repositioning or movement, the constant weight on her backside, the skin breakdown from the urine and lack of cleaning or moisturizing of the skin, your mother has a giant bedsore.
This is completely preventable. Bedsores,(also called “pressure ulcers”) except in very limited circumstances, can be avoided by good skin care, repositioning and constant attention and inspection. Mom obviously has received none of this.
You race down to the nurses’ station and demand to speak to the unit manager. You raise holy hell. The Unit Manager, while sympathetic, is distracted by 3 phones ringing and several call bells going off, nods, says they’ll look into it and blows you off.
Monday morning, you call the director of nursing for an explanation. You leave three messages; all go unanswered. You call Mom’s attending physician’s office. They tell you they will send out the nurse practitioner to have a look and will call you back.
What are you to do now?
Tune in for Part IV! In which we explore the resources available to help you advocate for Mom.
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.”
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
Lately, I seem to see lots of articles, blog posts and general hot air on “choosing a nursing home.”
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.
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
It’s a constant battle. What do you think the most difficult conversation we have is with aging parents? About the Will? Power of Attorney? Moving in with us? Nope. Perhaps the single most contentious subject is when we have to take Mom or Dad’s keys away from them.
And you may want to have that conversation. But understand that driving – or loss of driving privileges – is a brutal blow to someone’s independence. No longer free to come and go as we please, can’t just run out and get groceries, a gallon of milk, stop in to get a trim or pick up a book of stamps; no quick trip to the bank, stop over to play cards or have lunch with the girls; go to choir practice or Sunday school without major planning just to accommodate transportation. No, now we must ask someone to help us do every little thing. It is a major, very unsettling change and it serves to make one as dependent on others as a small child. Very upsetting.
Well, I have good news for your parents and bad news for you. You don’t really have the right to take someone’s driving privilege. Not EVER.
The only folks who can take Mom or Dad’s driving privileges away from them are the same people that gave them to them in the first place: the Department of Motor Vehicles (DMV).
That’s right. No matter how bad their driving, their eyesight, their reaction time, their general health or mobility – you cannot take Mom & Dad’s keys away.
One strategy you might take is to refer Mom or Dad to the Virginia “Granddriver” program. At a minimum, encourage them to take the Granddriver assessment to get a more objective view of the driving ability (instead of the opinion of their smarty pants grown children!) Take the Granddriver test here
Convinced that Mom or Dad shouldn’t be driving? There is one avenue open to all of us who care about an elder person’s safety and well being – not to mention the safety and well being of everyone else in the Commonwealth! You can – anonymously even – advise the DMV that you believe a driver is a danger to themselves or others on the road. The DMV will then contact the driver and require them to set an appointment with their doctor for a medical assessment of their ability to safely operate a motor vehicle. If they don’t comply, they lose their license. If they are not fit to drive, same. I think that the most useful part of this process is that while the doctor probably knows the person pretty well, they are able to be far more objective about their actual ability than we, family members and caregivers, are able to be. To report a driver you believe to be unsafe, download or fill out online the DMV Medical Review Request Form (PDF link) and send it in.
There’s a couple of important points to consider before going to this extreme.
First, occationally, the inability to drive is a temporary condition. For example, I know someone who was having trouble regulating their blood sugar and would have serious swings upward and downward. There was the possibility he might black out behind the wheel and we made a decision – together – that he would just not drive just for the time being. That is to say, until he got his blood sugar under control again. This compromise served two purposes:
a) it kept him (and everyone else on the road!) safe
b) incentivized him to take the steps needed to make changes and do something very important for his health – start testing and get his blood sugar stabilized.
Secondly, it is possible to negotiate limitations that keep driving a safe option and lengthen the time that an elder is able to remain independent. Good for them, good for their family and caregivers. My own mother (now 83 and recently widowed) has always been an excellent driver. But she has some limitations now – her eyesight is not what it was and neither is her reaction time. Sometimes she gets confused or is easily distracted; fatigue is often an issue. To keep her both safe and independent, we agreed that she would limit her driving to familiar places – to and from grocery store, bible study, bank, post office, nearby friends. All these are short trips with routes she knows very well. Allowing her this freedom (as if I had a choice?) keeps her able to do the things she needs to do to stay at home as well as remaining socially active instead of isolated at home She also agreed not to drive at night or long distances. The other plus for us is that she drives a big, heavy, Mercedes station wagon. God help the person she hits because nothing is happening to her in that tank!
Like so many issues that arise when dealing with aging parents, its important to remember that they there are all kinds of choices. It is also important to remember that unlike us – forever mewling teenagers to our parents – our parents are NOT children. They are entitled to their independence, respect and to make the choices – however ill-advised or foolish – how and when they wish.
I drive a little Mini-Cooper, – its bright red with black racing stripes I’ve added to it two round, black, red and white, magnetic signs on either side that say in- large print: “ELDER LAW” – and below that “Attorney.” My reasoning is, if you’re going to drive an eyecatching little sports car, you should use it to good effect.
The other day, I had someone roll down her windows at a stoplight and take a picture of the side of my car. She waved and shouted out to me that she’d be calling me and added, I’m a “sandwich generation member.” I’d venture a guess that she knows exactly what elder law is. She is one of the growing population who is simultaneously caring for her own children (probably teens or starting college) and her own aging parents or other relative.
Thanks to the signs on my car, people often ask me, “What’s Elder Law?” My answer is that if it involves seniors (55+ includes most children of elders) and something legal or government related, its probably Elder Law.
If they think of it at all, most people will relate to the bread & butter issues of my practice: Wills, Trusts, Powers of Attorney and Advanced Medical Directives. And in truth, that is the work that pretty much pays my bills. But there is far more. Most people have not given a thought to how they will be cared for when they are no longer able to do it themselves. And more critically, how will they pay for that care on their now fixed income and resources? Long Term Care planning is something that is vital to all of us as something on the order of 70% of us will spend our final days in some kind of care facility.
Many of the clients I deal with have issues related to an elder person’s ability – or inability – to make decisions and care for themselves. That includes decisions about their care and well being as well as decisions about their property and finances. Typically people come to me believing they need to seek guardianship or conservatorship. The former gives the control over the person – healthcare treatment, living arrangement and the like and the latter give one control over the person’s property and finances. I’m always happy to try to find a non-judicial way to avoid that as it is a long, expensive, court procedure which may be completely necessary. And when it is necessary, I can take care of the proceedings from start to finish.
One of the most troublesome areas that my clients deal with is the labyrinthine halls of Medicare and Medicaid. Both are extremely complex, government or government regulated areas that can overwhelm people who work in the field all the time. Connected with these agencies is dealing with local social services departments. All have reams of manuals, rules, regulations and eligibility hoops to jump through. This too is Elder Law.
In variably, dealing with these issues means dealing with family members. That is often a minefield. Many adult siblings have what I call “sandbox issues” which go back to childhood and teen years and have nothing to do with the present decisions that need to be made. Nevertheless, these long simmering issues often rear their ugly heads and must be dealt with in order to ensure that Mom or Dad get the care and assistance they need to remain comfortable and dignified right up to the end. Counseling and mediating with Adult Children is a big part of what I do as a part of my elder law practice. Sometimes it means litigating as a last resort.
All of this is done while walking a balance beam that means never forgetting that my client is Mom or Dad and everything must work in their interest no matter who may be paying the bills. Often the very toughest part of my job!
I have recently been busy training all manner of folks – from Certified Nursing Assistants, to family caregivers, to Geriatric Care Managers (GCM) to my fellow attorneys (many practicing Family law but not Elder Law) on all aspects of decision making or mental capacity issues in adults, particularly in elders. What it means, what happens when it fails, and who some of the surrogate decision makers are who may properly step into an incapacitated adult’s shoes.
Wanna learn more? My friend, Elizabeth Swider, CEO Extraordinaire of Care is There, recently taped and produced one training session that I did for her flock of highly qualified Geriatric Care Managers (GCM). You can watch it for free, here: