What to Know and Expect When a Loved One Is Severely Ill: Part 2 -
To My Family of Readers — What to Know and Expect When Severe Illness Hits Close to Home: A Guide (Part 2 of 2)
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This concludes the quadrilogy arising from the recent passing of my precious wife of 20 years, Ellen the love of my life. In the past five months, despite my lifetime of experiences in a wide range of professional areas, I found myself needing to learn a great deal very rapidly about home health care and caregiving, durable medical equipment, Medicare “do’s and don’ts,” and so much else that it seems a shame for me not to share guidance with my loyal family of readers. In Part One, I shared what I have learned about how Medicare’s payment structure impacts the length of hospital stays; differences to weigh when considering having a loved one cared for at home versus at a “skilled nursing facility”; insights into Physical Therapy, Occupational Therapy, Speech Language Pathology and getting it covered; options for laboratory blood orders being drawn at home and for transporting patients from home to doctors’ offices and to diagnostic procedures when the patients are not ambulatory; and the importance of documenting for your loved one the usernames and passwords you use for online accounts. Having come face-to-face with all this only recently, I share these observations, although sometimes personal and in some discrete instances unique to my Orthodox Jewish religious faith and practices, because most seem so universal that they will help many readers when encountering the need to navigate many of these same considerations — which I hope are a long way off. Part One dealt with items 1 through 5. I continue here with Item 6:

6. Durable Medical Equipment (DME)

In most cases, Medicare will cover wheelchairs and walkers.

Sometimes an especially impaired patient may need a home hospital bed. They typically have the width of a twin bed and extra length, extending to a standard 84 inches. So they require bed sheets that are “extra long” for twin beds. It is important to have a gel pad or an electric air pad that rests above the mattress to help reduce the chances of skin pressure ulcers (“bed sores”). There mostly are two types of hospital beds. All of them electrically raise the patient from the supine lying position to sitting erect. But to lower and raise the bed height (say, to assist the patient in getting in and out of the bed, or to assist the caregiver’s access for certain purposes), some hospital beds require the caregiver to manually crank the bed up and down, like the Wright Brothers preparing for takeoff at Kitty Hawk, while others have an electric button to raise and lower. Medicare typically will cover the hospital bed, and will cover both the semi-electric and the fully electric; you just have to know to ask the doctor to prescribe the fully electric bed. Medicare typically also will cover the gel pad if the doctor prescribes it. And, typically, the doctor will neglect to prescribe the fully electric bed or to include prescribing a gel pad but will cheerfully add it if you ask. So know to ask.

Likewise, some patients cannot move their legs. For them, a Hoyer Lift may be desirable. Medicare typically covers that, too. As with the hospital beds, there are the Hoyer Lifts that require the caregiver manually to pump a hydraulic lift each time, like an early American pioneer pumping well water, and others that do it at the press of a button. You just have to know to ask your medical provider to prescribe the electric one.

In order to obtain insurance coverage for a DME, you must have it formally prescribed by a medical provider (e.g., the hospital, the medical specialist treating the condition, or your primary care physician) who deals with and accepts Medicare. Medicare will not cover the DME if you simply buy it online or at a store without a prescription, or if it is prescribed by a doctor who otherwise does not accept Medicare. In addition, the items must be provided by a DME hardware supplier who is on the official list that Medicare recognizes. So, even if you buy it online with a prescription, it may not be covered if it simply comes from an Amazon or E-Bay type of supplier that is not specifically Medicare-authorized.

7. Stairlifts

Stairlifts get installed by brackets for the track being nailed into your steps, with another bracket screwed in every two or three steps. If your steps are carpeted, then often no one will notice much or at all if you later have the stairlift and its tracks removed. If you have lovely exposed wood, however, ask the company what will happen aesthetically if you later want the stairlift removed. You can rent a stairlift, with an understanding that it will be removed by the end of the term, or you can buy one for long-term or permanent ownership. In a home of 16 steps in two segments (eight steps, a landing, and then eight more steps the other way), rentals tend to start at $3,000 or so for a few months with steep monthly additional payments. By the time you are at nine months or a year, you have spent $6,000 or so. And it costs around $6,000 or so to buy it outright.

At the bottom of the stairlift, the last segment of track extends onto your main floor (though it does not require nailing into your main floor tile or wood). That extra track segment is there helpfully so that the chair can descend flush to the main floor, not stop descending prematurely a step or two before the bottom. But the extra piece of track poses a potential tripping hazard for people walking matter-of-factly on the main floor when the stairlift chair’s last use has left it not reposing at the bottom but at the top of the track. One way to avoid tripping over the extended track segment is by putting a large house plant or piece of furniture alongside it, blocking it from becoming a tripping hazard. Another approach is to pay extra for the last segment of track to be capable of “folding upward.” Thus, that last segment can be raised from the floor to be at a 90-degree angle with the track up at the first or second step. If you choose a folding last segment, it can be manual or electric; that is, you manually raise or lower it, or you do so by pushing a button. Although the electric option is easier, it is not that inconvenient or demanding to raise and lower the segment manually, and the manual option helps avoid the concern that electric “liftable” segments sometimes tend to malfunction, sometimes thereby incapacitating the whole stairlift.

Although you should consult with your tax expert, and not rely on this sentence, it is very possible that your tax adviser will tell you that the costs of caregiving, therapists, DME, stairlifts, special ambulatory transportation, etc., are tax-deductible on Schedule A for medical costs, subject to the rules governing the initial percentage of income that is not deductible.

8. Wills and Advance Directives

You should have a will. It should be looked at by an attorney, signed and dated, so that dejected claimants can be precluded later from successfully challenging its validity. You also should have documentation that appoints someone to make health decisions for you if you cannot. There may be moments when a hospital or nurses or doctors suddenly will call and ask for permission to insert a catheter or port, or to administer some kind of treatment for which they need permission.

You should have a durable power of attorney that appoints someone to make other decisions for you, too, like financial ones. If you do not trust your spouse, appoint a child, sibling, or bosom buddy you would trust with your life. If none of them is talking to you, and you don’t trust any of them, find a family law attorney to make decisions and to be executor of your will. Remember that some ostensibly very good people become different when they find themselves near money. The rabbis of yore noted that, when you take a pane of glass and look into it, you see everyone else, but when you line it with silver you see only yourself.

There are protective steps you can take well in advance to avoid the wasted time and expense of probate after death, but you should consult an attorney in advance because even some simple solutions can contain pitfalls.

Advance Directives instruct a hospital whether, in the event of catastrophic health circumstances, they should go to all efforts and extremes to maintain life, even if it means the drama and extremes of cardio-pulmonary resuscitation (CPR) or attaching a ventilator to assist with breathing. In the alternative, a “DNR” order (Do Not Resuscitate) tells the hospital that, if the patient’s heart stops, they should let it be and not resuscitate. These matters entail great complexity, overlap into issues of morality and theology, and just are very tough. In our case, when my dear precious Ellen of blessed memory and I read the Advance Directive forms years earlier, we decided mutually that we absolutely are not going to leave it up to some doctor(s) or nurse(s) to decide whether, at a time of severe medical crisis, our respective lives still will have value. In today’s environment, with liberal Democrat states racing to legalize assisted suicide — something incomprehensible not so long ago in the days of Dr. Jack Kevorkian (“Dr. Death”) — we mutually agreed that the standard Advanced Directive forms we were shown allow too much leeway for life-or-death decision-making to people who may not value the preciousness of life as we and our Orthodox Jewish religious values do. If you ever have seen parents love a disabled child or a child with autism, you have seen that all life has profound meaning, even though a third party may think otherwise, and it is “dicey” to leave it to some Nurse Ratched or homicidal nurse to decide when to “pull the plug” or “start the morphine.” As a rabbi I personally have been acquainted with situations where (i) nurses or doctors recommended pulling out tubes and moving towards sending a patient to death with “palliative care,” (ii) the families demurred and insisted on full medical care and treatment to maintain and try to cure, and (iii) the patient ultimately recovered fully and continued living more years in very good health and cognition.

In Ellen’s and my cases, we therefore opted not to sign any papers and instead to advise each other thoroughly and explicitly what we wanted — to wit, the same thing: to be continued alive with all possible medical efforts as long as the reality and value of life would not degrade to the point of simply being a Karen Quinlan type maintained unconscious on machines with no end in sight. Because we both are deeply religious believers in G-d Who split the Sea of Reeds when there was no hope, who extended the life of King Hezekiah when there was no hope (2 Kings 20:1-6; Babylonian Talmud, Tractate Berakhot 10a), and Who performed and performs incalculable miracles every day, we both also would wait three more days to allow for a miracle even after all hope realistically is gone. (The Jews in the Wilderness of Sinai prepared three days to receive the Torah at Sinai, Queen Esther asked the Jews of Persia to fast and pray for three days for a miracle before she approached the King, and there are other examples in Jewish theology of three days’ waiting for a miracle.) In having ventilators and such utilized, it remained imperative that the ventilators be set to assist with breathing, not to replace breathing completely, because it would be deeply problematic under Jewish practice to remove a ventilator if that act itself would directly kill the patient.

When a patient has had a ventilator removed and resumes breathing completely on his or her own in an end-of-life situation, a hospital can transition to “palliative” or “comfort care,” a term associated with “hospice,” whereby a morphine drip and certain other medications can provide comfort. A responsible hospital will provide only as much morphine in the drip as to ensure comfort, but will not supply extra to hasten death. Thus, a patient in fact may continue alive and breathing comfortably for hours, even for more than a day, after a ventilator has been removed. A responsible hospital following accepted medical ethics will not hasten the passing by unduly increasing the morphine. Comfort can be reassured by monitoring the patient’s heart rate and breathing rate. If the numbers remain steady within the standard range, one may be assured that the dying patient is not agitated or disturbed, despite a change in the sound of breathing during a patient’s final phase.

Orthodox Judaism forbids autopsies, and most if not all American states honor that religious proscription. State law will override in cases of suspicious or drug-related deaths, where an autopsy may be essential to provide the evidence needed later to prosecute a killer or murderer; even then, most states will allow an Orthodox Jewish medical expert to be at the autopsy to ensure that the procedure is minimized to the least invasive necessary. In the event of an accidental death, some states like California mandate an autopsy unless the family can produce a document signed previously by the deceased stating that his or her religious beliefs prohibit an autopsy. In Orthodox Judaism, it is permitted to donate organs.

9. Mortuaries and Cemeteries

A person who purchases a gravesite alleviates surviving family from having to deal with that trauma amid the catastrophe of a loved one’s death. Several years ago my dear precious beloved Ellen of blessed memory and I purchased two gravesites in Israel, in the Rabbinical Council of America’s section of the Eretz Hachaim Cemetery in Beit Shemesh, 30 minutes from Jerusalem. Anti-Israel and anti-Zionist Jew-haters do not begin to grasp the depths with which observant Jews love and cherish the holiness and sanctity of the land of Israel. At the same time, burial in Israel is an affirmation that one believes there will be a Messianic Coming when G-d will revive the dead, and the Holy Temple will be rebuilt in all its glory on Mount Zion, the Temple Mount in Jerusalem.

A mortuary is a facility that takes custody of the deceased and prepares the deceased for interment. People often can purchase “pre-need” arrangements from a mortuary, again to alleviate the survivors from being consumed with those responsibilities at the time of sudden catastrophe. The mortuary business is a bit “so-so.” Many are run by exceptionally sensitive and decent people; some are sketchy. Everyone wants to make a buck — even the Socialist Bernie Sanders is a millionaire with three homes — and mortuaries know they have people in a bind because the deceased typically now is stored in some morgue, and something has to be resolved quickly. The situation does not allow shopping for a month as when buying furniture, and it is unseemly for relatives to be “dickering” over expenses when dealing with a loved one’s death in contrast to when buying a car. The mortuaries know that, and many take advantage of the imbalanced negotiation posture. Consequently, they often pressure families into buying more expensive coffins than they need, with extras like wood inlay, expensive imported woods, handles for pallbearers made of real gold. Remember: it all will be buried in the ground a day or two later. They sell expensive clothes and other extras with which to dress the deceased for a “viewing.” Lots of other stuff. Most state legislatures therefore have enacted special laws regulating the mortuary-funeral business. Clergy are experienced in assisting congregants with such dealings if the mortuaries get difficult. Once the priest, pastor, or rabbi gets on the phone, the games stop.

In Orthodox Judaism, embalming and public viewing both are forbidden, and fancy-shmancy stuff is forbidden. The rabbis taught that, in death, all people are equal. As souls arrive before the Heavenly Court, their bank accounts, political office held, Hollywood stardom, and physical appearance mean nothing. “Grace is false, and beauty is vain. The woman who fears the L-rd shall be praised.” (Proverbs 31:30). Therefore, everyone in death is dressed in traditional simple white shrouds and buried in a plain pine coffin with no embellishments. (In California, state law requires the coffin to be placed in a cement container. In New Orleans, there are other state requirements because the land is below sea level. In Israel there is no coffin.)

The mortuary takes custody of the deceased from the hospital, arranges for the legal paperwork like the death certificate, and prepares the deceased for burial, transporting to the cemetery. In some traditions there are “viewings” of the deceased and “wakes.” These do not happen in Orthodox Judaism, a religion where the deceased is buried promptly, usually within 24 hours of death, except in exigent circumstances such as waiting an extra day or so for a next-of-kin to arrive from a distant location or when needing to comply with certain government regulations as exist in America and Israel during this coronavirus era. (The tradition of rapid burial is so central to Jewish faith and practice that the comedian Robert Klein told of how his nonagenarian grandfather always was afraid to fall asleep in front of the television for fear that the grandkids would bury him before he awoke from his nap.) In Orthodox Jewish practice we do not bury above ground in mausolea, and cremation is forbidden. Regardless of your faith, it is wise to consult your priest, pastor, rabbi, or imam promptly when there has been a death. They are trained to provide the assistance that comes with their experience, and they can provide great comfort.

Note, finally, that cemeteries nowadays offer livestreaming of funeral services for a fee, and those recordings can be downloaded. They allow others who could not be physically present to “attend” in spirit, and they enable family to revisit the moment on special occasions like a Yahrzeit, an anniversary of a loved one’s passing. Thus, my dear precious Ellen’s funeral was live-streamed from Israel by two different providers so that it could be viewed by those in America who could not attend; in the aggregate, more than 600 have viewed the eulogy I prepared. (In an abundance of caution, I arranged for two separate live-streamings as a “fail-safe” in case one was mishandled.)

I hope this information has helped, and I hope you will not need this for a long time and just will file it away for now.

Dov Fischer
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Rabbi Dov Fischer, Esq., is Vice President of the Coalition for Jewish Values (comprising over 2,000 Orthodox rabbis), was adjunct professor of law at two prominent Southern California law schools for nearly 20 years, and is Rabbi of Young Israel of Orange County, California. He was Chief Articles Editor of UCLA Law Review and clerked for the Hon. Danny J. Boggs in the United States Court of Appeals for the Sixth Circuit before practicing complex civil litigation for a decade at three of America’s most prominent law firms: Jones Day, Akin Gump, and Baker & Hostetler. He likewise has held leadership roles in several national Jewish organizations, including Zionist Organization of America, Rabbinical Council of America, and regional boards of the American Jewish Committee and B’nai B’rith Hillel Foundation. His writings have appeared in Newsweek, the Wall Street Journal, the New York Post, the Los Angeles Times, the Federalist, National Review, the Jerusalem Post, and Israel Hayom. A winner of an American Jurisprudence Award in Professional Legal Ethics, Rabbi Fischer also is the author of two books, including General Sharon’s War Against Time Magazine, which covered the Israeli General’s 1980s landmark libel suit. Other writings are collected at www.rabbidov.com.
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