This is the penultimate of a quadrilogy, I guess, for readers who have become my family over the years. In the aftermath of my losing my precious wife of 20 years, Ellen the love of my life, I share observations that, although sometimes personal and in some discrete instances unique to my Orthodox Jewish religious faith and practices, I think also are universal and will help many readers navigate your own future experiences. Even though, besides being an attorney of 26 years and a law professor of 16 years, I also am a rabbi of 40 years, it turns out that there was a great deal of significant information I simply did not know. I just spent the past five months learning so much so rapidly, leveraging the lessons and precautions learned during decades of my legal experience to avoid major pitfalls along the way, that it seems a shame for me not to share guidance with my loyal family of readers. Even the two trolls who invariably comment on my writings will benefit here. Ellen was laid to rest in the Holy Land of Israel on 15 Tamuz, July 7, in a service that was live-streamed by two separate companies so that it could be viewed by more than 600 long-time friends, fellow synagogue congregants, coworkers, and family members in America who could not be there.
1. Usernames and Passwords
Before my beloved Ellen, of blessed memory, went into the hospital for her third glioblastoma resection, she prepared a comprehensive list for me of all her computer-account usernames and passwords. She did not mention it to me, nor did I realize that she perceived the peril she was facing for the third resection, because the prior two resections of September 2017 and December 2018 saw her rebound famously. But she intuited that this time would be different. After she returned home, I happened to be looking for something, and I found the list. That enabled me to get into her credit card accounts and pay all bills timely, set them up thenceforth for auto-pay, and attend to a bunch of stuff she otherwise would have handled, respond to emails that had been sent to her, get back to callers who had left her voicemails on her smartphone, and such. She also gathered all her important documents in one place. As it happened, I later needed to find her passport because she was being laid to rest in the Holy Land of Israel, and she had made my finding it instantly facile.
2. Medicare and Hospital Stays
Ellen was on Medicare, not because of her age but because of disability. For people under 65, Medicare health coverage begins after 24 consecutive months on Social Security Disability. People diagnosed with glioblastoma and certain other particularly perilous or disabling illnesses are accepted for Social Security disability benefits very rapidly without the hassle that many others encounter. Even so, the Medicare system wants to be certain that a disability will extend a long enough term to justify the administrative process of moving an under-65 disabled person onto Medicare.
When someone is admitted into a hospital and has Medicare coverage, the financial end works like this: The hospital certifies the illness or reason for hospitalization by assigning the matter a certain numerical code or codes that Medicare associates with that medical condition. Medicare then pays the hospital a flat lump sum for that patient’s hospitalization, based on Medicare’s institutional assessments of what such a code number typically should entail for hospitalization and treatment for that condition. The thinking is that Medicare does not want hospitals using Medicare patients to run up profits at government expense (because Medicare so carefully avoids waste and fraud … ). Therefore, if the hospital wants to maximize profitability, it will treat efficiently. If the patient is cured and discharged more effectively, efficiently, and rapidly than Medicare’s average anticipates, the hospital thereby earns the right to pocket the leftover lump sum payment. By contrast, if the patient lingers longer than the Medicare average, needs extra doctors’ care, and requires extra diagnostic procedures, that overage comes at the hospital’s own expense. Therefore, the hospital has an enormous incentive to move Medicare patients out the door. Again: Be aware that hospitals have a steep financial interest in speeding Medicare patients out the door and back home.
Honorable, top-quality hospitals will absorb the financial losses when Medicare patients run into complications that extend their stay and increase their needed treatment. First, because the hospital cares about its reputation. Second, because the longer stays ultimately get balanced out by the shorter stays. Less honorable or less competent hospitals are kept somewhat honest, too, because they know they will be sued for malpractice if they mess around. Nevertheless, all hospitals will try to get Medicare patients out the door and discharged as fast as possible, even when a dithering idiot can see that the patient needs more hospital time. The villain whose job it is to dump the patient back on the family is called the “Case Manager.” The Discharge Case Manager or Discharge Nurse or Discharge Doctor calls and is very nice, makes sugary-sweet small talk, and assumes you do not know that he or she is a mercenary. She or he presents that the patient really wants to be home now and hardly can wait. Be aware. You are dealing with a blood-sucker who would put Dracula to shame.
Therefore, ideally, every person should have a “Dov” in their back pocket, who is ready (i) to argue the ethics and morality of premature hospital discharge with the spiritual passion of a rabbi, (ii) to fight with verbal hammer and nails as a trained high-stakes litigator who never lost a case in 10 years, and — if necessary — (iii) is ready just to kill the damned Discharge Case Manager with such readiness that the Discharge Case Manager knows it. By your having a close relative or reliable life-long friend who really loves you, is not a sucker, and will not be cowed (whether Holstein or otherwise), you can extend a loved one’s hospital stay for longer until the loved one truly has been cared for as completely as is appropriate, Medicare or no Medicare.
Beyond your having a passionate and capable advocate, Medicare likewise has a backup system for those who do not have a “Dov.” In each state there is a Medicare-certified QIO (Quality Improvement Organization). You look online to find the one in your state. By law the hospital must give you a written notice two days before they intend to throw you out. You then can appeal by contacting the QIO by no later than noon of the day immediately after the hospital gives you the notice. Thus, if they give you the note on Tuesday, you have to appeal to the QIO by Wednesday 12 noon. If you have not read this article, how in the world would you know before your appeal deadline has passed that you are on such a deadline? (Yes, it is in the small type on the two-day discharge notice. But you will read that like you read the terms of the agreement you check off when you set up an online account or like when you check off some agreement to terms before downloading a computer program, and it gives you 10 pages of legalese to agree to. Or like when they give you 600 “disclosures” to sign when you get a home mortgage.)
If you timely appeal, the QIO then does a rapid review and usually decides by the next day whether to sustain the hospital discharge or to order an extension. Usually, the QIO backs the hospital, but sometimes they sustain the appeal. If they rule against you, you can ask them for a “reconsideration.” That buys another day or two. While the thing is under QIO review and reconsideration, Medicare pays for the extended hospital stay, so you usually can get at least one or two extra hospital days covered by Medicare just by appealing to the QIO. By law, a hospital cannot throw a patient out on the street if you refuse to accept the discharge; they must then continue to hold the patient. Once the appeals process is over, however, if you have lost and refuse to accept the discharge, then the patient or you will have to pay out of pocket for any additional hospital days, and that of course costs a fortune.
Most people do not know about the QIO stuff. By the time they figure it out, the 12 noon deadline has passed. Yet another bonus — even for the trolls — for being one of my regular readers.
Note: There are “Case Managers,” and there are “Case Managers.” Some can be incredibly helpful and deeply sensitive in matters other than discharge. Some will help you obtain esoteric medicines that are difficult to get at your local pharmacy. They will help you obtain “durable medical equipment” (see below) needed for use in your home. Even after the patient has been discharged and is at home, they will help make certain connections, obtain physicians’ signatures, and be really helpful. It will not take long for you to determine with which kind of “Case Manager” you are dealing.
3. “Skilled Nursing Facility” Versus Home Caregivers
The elegant name for nursing homes and senior-care (“old age”) homes is “skilled nursing facility.” If you are admitting a loved one to such a facility, do your research on sites like “Yelp!,” etc. Remember, as with users’ reviews of everything, angry people are more prone to go online and tell the world about their mistreatment than happy people are to take out the time to post praises. So read the reviews with a discerning eye and ear. Typically, a nursing home has one staffer for every 15 patients. They have to make a living and a profit, and that is what it is. Remember that ratio: one per 15.
By contrast, in your home the person gets personalized attention and care. But it can be very demanding and draining. You may find you need to hire a caregiver or more. There are places on social media to find caregivers privately, and there also are agencies that provide caregivers. It is much less expensive to hire privately than through an agency. If you follow the law, you need to consider that caregivers must be in America legally, that FICA must be paid, state disability insurance, all the legal administrative and paperwork requirements when hiring a person legally. If the caregiver gets hurt in your home, you or your home-insurance or umbrella policy may be liable unless they themselves are insured. If they are crooks, druggies, or other social lowlives, well — not good to have them in your home. Thus, getting your caregivers through an agency costs a bunch more, but you know the caregivers are here legally, have been vetted, are bonded, are insured, have been put through some caregiver training, are answerable to an employer, and that the agency takes care of the governmental payroll requirements.
Agencies have caregivers who are great and others who are crummy. It seems that they initially send the crummy ones, hoping somehow that the new client will not know what a good one is like, so will accept the crummy one who is hard for the agency to place with clients who know better. Usually, the first caregiver or two or three whom they send you are crummy. At that point, after a day or two, you call the agency and tell them that you will go to another agency — and you do your online homework, so you can name the other agency because that knowledge lets the first one know you mean business — and then they send a good one.
A good caregiver is a G-d-send. The problem then becomes that wage-hour law will require you to pay time-and-a-half (“overtime”) for any caregiving by that person exceeding eight hours daily or 40 hours a week. So, if you need eight hours daily for seven days a week, it will not suffice to maintain only one excellent caregiver, but you will need to get a second one also through the agency: one who comes eight hours daily four days per week, the other three days per week. Likewise, if you need more than eight hours daily, you similarly will need a separate nighttime caregiver because, if you use the day person for all 12 hours or whatever in the same day, you run into “time-and-a-half.” The excellent caregiver will cry with tears that she really needs the added income from working 56 hours all week (seven days at eight hours daily), not just 32 hours, and you will cry with her that you wish she could be there all 56 hours. She even will volunteer to work the 56 hours and waive her rights to the overtime pay. But she voted Democrat, and now she can enjoy her “worker protections,” drinking her tears with a paper — not plastic — straw. If you try allowing her to waive her “time-and-a-half,” know that by law it cannot be waived, and she later can sue you for treble damages (not just what you underpaid, but three times that amount). And if she does not sue because she honors her promise, the government can sue.
Often it just is not possible to provide home caregiving. Perhaps the nearest family are far away. Perhaps the person needs to be in a 24-hour-care environment that also provides a social setting for interacting with others. Thus, nursing homes can be better than home caregiving in certain situations. Note, however, that a person is far more susceptible to suffering a bad fall in a facility because they have only one staffer for every 15 people, unlike the personal care at home. Moreover, diseases like the flu and pneumonia are far more prevalent in a “skilled nursing facility” than at home. Not to mention COVID-19 in Andrew Cuomo’s New York and in other such states that adopted policies similar to his.
4. Physical Therapy, Occupational Therapy, Speech Language Pathology
A Physical Therapist helps rebuild a person’s body from the waist down (e.g., strengthening the legs, regaining standing and walking skills). An Occupational Therapist helps rebuild from the neck down to the waist (e.g., arm strengthening, self-grooming like brushing teeth and washing one’s face, dressing oneself), and a Speech Language Pathologist helps rebuild from the neck up (e.g., cognition and memory skills, swallowing, focus and attention). Thus, an Occupational Therapist has nothing to with a job or occupation, and a Speech Language Pathologist often has very little to do with speaking or language (although, if a person does have speech impairment, that is within the rubric of the Speech Language Pathologist).
After a hospital stay of at least three overnights, Medicare and most private insurances will pay for a few weeks of home health services that include some visits of a Physical Therapist, Occupational Therapist, and Speech Language Pathologist, as well as a home nurse. That coverage typically runs three or four weeks. After that, Medicare and many private insurances will cover additional weeks of ongoing Physical Therapy and some Occupational Therapy at an outside facility. In this coronavirus era, it is important to select a top-flight facility that seems to be really proactive on taking prophylactic steps to protect patients from contracting COVID.
5. Transportation to Medical Appointments and Home Blood Draws
Some patients are less ambulatory than are others. Yet sometimes even an incapacitated patient needs to travel — say for a medical diagnostic test like a CT scan or MRI, or for an in-person doctor’s appointment that cannot be conducted via a Tele-Med or Zoom-type session. For these patients, there are private companies with wheelchair-friendly vans and others that even transport people on gurneys as do ambulances. These options exist but can be very expensive. Often, if a doctor like a primary care physician or the doctor who is being visited for the appointment certifies that the patient physically cannot get to the diagnostic test unless by special transportation, that private transport will be covered, in whole or in part, by private health insurance.
Similarly, especially in the current coronavirus environment, there are companies that come to your home to draw blood when needed for laboratory tests. These often may be covered by Medicare or private insurance with proper medical-need certification.
I hope this information is helpful, and I hope you will not need this for a long time and just will file it away for now. Part Two will include additional information along these same lines, including what you may find helpful to know about obtaining necessary in-home durable medical equipment, stairlifts, contemplating wills and advance directives, and dealing with mortuaries and cemeteries.