Stress and FuneralsThursday, September 11th, 2008A reader writes me, “Do you feel the stress of going through a funeral of a loved one is less if that funeral is less traditional and fits the personality of the deceased?” Well next to shotgun weddings — in fact right up there with all kinds of weddings — there’s generally nothing more damaging to the psyche or as costly than the last-minute funeral. The only difference being, of course, that the guest of honor at a funeral doesn’t have to suffer the high-priced indignities awaiting a bride. But everybody else involved in the funeral planning sure as hell does. How to get around the millions of funeral disasters in store for the unwary? For help, I asked Jane Hillhouse, the California-based founder and owner of Colorful Coffins and ECoffins. “I think what’s important is to honor the wishes of the person who died,” Hillhouse says. “If they didn’t wish to be embalmed, for instance, then they shouldn’t be — embalming is not a legal requirement in most of the country.” But what about the person who left no funeral instructions? How do we create a tasteful ceremony? That’s a more difficult issue, says Hillhouse. But families and friends can at least try to make a funeral somehow less…depressing. And low cost. “If there’s space, a home funeral is a very appropriate way of saying goodbye,” she says. “Family members can volunteer to take care of the body, washing it and dressing it. The planning for a home funeral — the music, the flowers, the candles — actually helps people in the grieving process. “Other families make their own coffins for the deceased — which makes the parting somehow gentler and easier to process.” No one is saying if you follow all these instructions, you’ll have tons of fun at your next funeral. But at least it can be more decorous and touching than the ones you’ve previously attended.
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What Hospices Cannot DoThursday, September 4th, 2008Since I volunteer at the Community Hospice of Washington, most people assume I’m a particular fan of hospice care. And in many ways I am. Hospices aren’t the dreary, depressing places a lot of them used to be. The in-patient units are great at relieving pain with super-charged meds. Home care patients are relieved to have the attention of nurses and volunteers who don’t talk down to them. The doctors aren’t — unlike most physicians — afraid of the dying. In other words, there are far worse places to be. And in this country, trust me, there is also far worse medical care available for the healthy. But here’s what a hospice cannot do: It cannot help patients who wish to choose a speedy death over dying. Personally, I understand both options: these are individual choices, and the selection of dying over death (or vice versa) really depends on the fortitude and beliefs of the person afflicted — and also on the nature of the illness. Some illnesses, like some patients, are simply a lot tougher to take than others. And until I reach the finish line, I’m not going to rule out any options for myself. A hospice also isn’t good at delivering advice. In fact its personnel work very hard at not giving personal advice — either to the dying or to their relatives and friends. So if you have questions about how to handle your squabbling heirs, or your sister whose visits leave you more depressed than before she arrived, don’t ask hospice personnel. (Ask me on line: I’m used to those questions on thecheckoutline.org. But during my hospice volunteer hours, I too am not allowed to answer those sorts of queries from patients. It can be frustrating). And finally — and this is a very serious issue, which I will deal with at greater length pretty soon — there is no kind of consumer study of hospices available as of this writing. What this means is: good, bad or indifferent, there’s no way you find out about your community hospice as yet. The American Hospice Foundation is currently conducting a nationwide study. But it won’t be ready until 2010. So sit tight. And don’t hold your breath.
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What Hospice Care Can DoThursday, August 28th, 2008Since I’m a regular volunteer at the Community Hospice of Washington DC — and a lot of people I know wonder why I would devote most Friday mornings to tasks they consider “totally depressing” (to quote one of my best friends) — I think I’m in a fairly good position to explain a bit about hospices in general. In the first place, most people under hospice care never see the in-patient unit. They are cared for at home, under the supervision of hospice volunteers, nurses, and social workers who manage their cases. The care they received isn’t non-stop. That’s important to remember because as Amy Tucci, who heads Hospice Foundation of America tells me, “The biggest problem hospices face is not a quality issue, it’s a misunderstanding issue. A lot of people think that if they enroll in hospice care, that someone will be at their home 24 hours a day. And that usually doesn’t happen.” Still, home care under hospice supervision is usually considered the optimum solution. It’s at home that a patient usually feels more comfortable, especially if there is family around. The food there is familiar, and medications can generally be effectively administered. When does someone who’s terminally ill need in-patient care? Usually if the pain is unmanageable. The one thing above all else that hospice medical personnel really know is how to control bad pain. And they are equally adept at figuring out which medications are most effective at diminishing discomfort for specific conditions. One of the most important things, for instance, I have learned in hospice work is tha methadone is perhaps among the most effective pain-relievers around. It has the least side effects, it is the most cost effective, and it treats more kinds of pain than any other narcotic. So why don’t more doctors prescribe it for the terminally ill? Because it has a bad street rep, and for most people, it’s hard to titrate. And of course in the big wide world outside hospice care, there’s always the fool doctor who worries that someone with maybe a month left of life expectancy will become “addicted” to a specific narcotic. So I’m not saying hospice care is the ideal solution for everybody. But there’s a good reason why one third of the terminally ill choose it. Next Thursday, I’ll discuss what hospice care cannot do.
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Don’t Even Consider Dying…Unless You’ve Got a WillThursday, August 21st, 2008For about the 10th time since I started this site in May, someone ostensibly literate and intelligent has written in, describing himself as “very healthy — in fact healthier than almost anyone I know.” Unfortunately this healthy person has no Will. Only boundless optimism about a future that seems to include immortality. The advice-seeker does, however, have an excuse of sorts: his fiancee, much younger than he, finds end-of-life preparations unsettling. And depressing. What should he do? Prepare for the future and risk the pique of his young fiancee? Or appease her, and play dice with the universe? My advice? Get yourself to a lawyer at once, today if possible. Draw up not only a Will, but also a Living Will, which will detail what medical measures you want (or don’t want) at the end of life. And don’t tell your girlfriend. (And by the way, since Advance Medical Directives also detail who you want, in the event of incapacitation, to make important medical decisions for you, the currently healthy guy should probably designate someone a lot less squeamish — and smarter – than his fiancee). All of which is to say that excellent health doesn’t last forever. Nothing does. And no one does. So start planning now.
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How To Get Your Doctor To CommunicateThursday, August 14th, 2008Almost as bad as an incompetent doctor, is the one who handles bad news even worse than the patient. Let’s face it, most doctors and nurses just don’t want to discuss dying. So here’s what usually happens: the patient gets an unhappy diagnosis, then a lot of mumbling spiced with incomprehensible medical jargon, then leaves the office, and comes home with — absolutely nothing. No understanding of the diagnosis. No comprehension of the therapies offered or how likely they are to work. No notion of what to do next. “Doctors are not inherently bad people, but they may well be badly trained,” says Rich Frankel who is a professor of medicine at Indiana University School of Medicine. “At the graduate school level there are just huge gaps in training. And physicians often feel they aren’t serving their patients well if they give them the bad news.” What to do? Train your doctor. That’s right. “One thing a patient can do is raise the topic with your doctor, simply say, ‘I would like to talk about the end of life,” Frankel suggests. “Most patients want to wait until a doctor raises that topic. Well if you do, you’ll be waiting a very, very long time.” It doesn’t have to be this way. In fact, he adds, in Great Britain, primary care physicians are taught to have end-of-life talks with patients long before anyone is really sick. The doctor may ask, “If you get a terminal illness, do you want me to tell you it’s terminal, or would you just want me to take over your care. That way a patient can respond, “Don’t tell me about my diagnosis, just tell my grown daughter.” Or: “I want to know everything so I can make plans.” Most important, Frankel concludes, if you suspect the news from your doctor may not be good, always bring a family member along to listen to the diagnosis and ask those vital questions you’ll be too nervous or fearful of bringing up. “And you can also bring a tape recorder with you to record what is said. Yes it may make the physician nervous,” he concedes. “But remember, it’s your health care.”
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What Ails Doctors (Part I)Thursday, August 7th, 2008“Patients get about 18 seconds to tell a doctor their concerns before being interrupted,” Richard Frankel tells me. Frankel is a professor of medicine and geriatrics at the Indiana University School of Medicine, and he has studied the amount of time allotted to a patient’s complaints. As the author of “Four Habits of Highly Effective Clinicians,” Frankel is also trying to do something about these shortcomings. If you think your doctor isn’t dealing with what ails you, Frankel knows why. Not only will you likely be short-shifted by medical professionals in terms of time, he adds, you will also encounter other problems. Many doctors, for instance, are unwilling to discuss a terminal diagnosis with any candor. “Reveal bad news? Talk about dying? As far back as the Greeks — more than 1,000 years ago — it was thought that revealing a bad diagnosis was bad for the patient and would depress the spirit,” he says. Even in the mid-19th century brutal truths were discouraged. “What the doctor would do, was take a family member of the patient into his confidence, and tell that relative that the patient’s situation was actually much worse than it seemed,” he says. “That way, if the patient survived, the doctor looked like a hero. If the patient died, the doctor had been smart enough to predict it.” And today? By and large, Frankel says, today’s doctors, at least those practicing in the US, are no more enlightened than their antecedents. The field of oncology is all about the disease — most trainees get no preparation in how to discuss illness with a patient. Moreover, Frankel points out: ”In the mind of doctorss death is the ultimate defeat, and they don’t want to admit defeat.” Next Thursday: Frankel will discuss what patients and their relatives and friends can do to get medical personnel to discuss end of life issues with candor.
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How To Protect Yourself Against PredatorsThursday, July 31st, 2008Dear readers: Once again our newest guest blogger Josh Slocum, executive director of Funeral Consumers Alliance has something intelligent and provocative to say on the subject of how to protect your bank balance — even after death. Funeral consumers face formidable and expensive obstacles around the country. In Hawaii, the state’s biggest cemetery and funeral company, Rightstar, was sued in 2004 — for allegedly skimming between $20-$30 million from a trust fund holding consumers’ prepayments. Despite this, the state’s legislature has refused for three years to pass tougher laws. In fact, after the Funeral Consumers Alliance of Hawaii revealed that funeral companies and their lobbyists spread tens of thousands of dollars around to members of the state committee considering reform bills, some lawmakers actually had the nerve to complain that activists were besmirching their integrity! In other words, it’s not enough to die well, if the burial leaves your loved ones without a dime. You can — and should — protect yourself (and your heirs) from predatory practices. Just a few simple steps can save you and your family a lot of money and even more grief: 1) Bone up on your rights. At www.funerals.org there is a wealth of information on your legal rights as a funeral shopper. Absorb them today, while you’re in a calm frame of mind. 2) Shop around. The worst mistake most families make is to use a funeral home just because they’ve used it before. If you don’t compare prices ahead of time, how will you know if what you’ve always thought of as your family’s funeral home is charging reasonable prices, or taking you for a ride? 3)And now a little plug: Funeral Consumers Alliance has chapters in most states. Join up and get price comparisons and recommendations of ethical funeral businesses (there are some! and we have their names…). Just visit us at www.funerals.org and click on “Find a local FCA.” Josh Slocum is director of FCA, a watchdog group dedicated to helping consumers get affordable and dignified funerals
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5 States You Shouldn’t Be Caught Dead InThursday, July 24th, 2008Dear readers: today we’re in luck. Josh Slocum, executive director of the Funeral Consumers Alliance (a great watchdog organization that makes sure your life savings don’t expire when you do) has a few thoughts about where in America you shouldn’t die. Dying is hard enough, and funerals aren’t much fun either. Most of us put off funerals too late, leaving our survivors at the mercy of a $15 billion dollar a year mortuary and cemetery industry. As the director of the Funeral Consumers Alliance, I’ve seen the good, the bad, and the ugly — from so-called regulatory boards that ignore consumer complaints to law-makers who’ve decided you don’t have the right to buy reasonably priced caskets, or even skip the funeral home and do it yourself. Here’s five of the worst offenders: Alabama Get out while you still can. Not only does Alabama have some of the weakest laws in the nation on pre-paid funerals, its regulatory office is a shambles. A 2007 state audit found the Alabama Board of Funeral Service had no idea how many funeral homes were licensed — and the Board also appeared to be falsifying its inspection records. Also, the Board staff didn’t have Internet access. In fact most of the records were written in longhand, on paper! Georgia A state that’s just peachy if you happen to own a cemetery or funeral home. Cemetaries are now allowed to charge a $125 penalty if customers buy a headstone from an independent dealer. The Funeral Consumers Alliance tried to help an elderly man who claimed that the funeral home he used to bury his wife substituted a much cheaper casket for the model he’d actually bought. The state board never answered his letters of protest (complete with documentation). On the other hand, the state board was indignant enough to fine those funeral homes that failed to keep the state-mandated 24 bottles of embalming fluid on hand at all times. Louisiana One of the few remaining states that still requires a funeral director’s license to sell caskets. The predictable results for consumers: a 200-600 percent markup over wholesale on the fancy boxes. Oh — and you’re legally required to hire a funeral home in Louisiana, even if you want to carry out a family member’s funeral privately, or with church help. Michigan Like 6 other states (Utah, New York, and Connecticut among them), Michigan says you have to hire an undertaker even if you want a home funeral for your relative. The idea that a state could bar a family from laying out its own dead would have shocked your great-grandma who likely attended many home funerals. And it ought to shock you today. Can you imagine a law requiring you to put Mom in a nursing home, even if you wanted to take care of her at home? In addition, Michiganders are required to have a funeral home supervise every burial — and get a funeral director’s “certification” on every death certificate. Just what is this funeral director certifying? I asked. But the state doesn’t seem to know. Hawaii A great place to visit, but I wouldn’t want to die there. Hawaii’s pre-paid funeral laws are neck-and-neck with Florida’s: ie. the worst in the nation. Funeral homes in Hawaii get to skim 30 percent of your prepayment off the top before providing you with goods or services. If you change your mind about the arrangement (or move) — too bad. Josh Slocum is director of the Funeral Consumers Alliance, a national non-profit 501 (c) (3) nonprofit watchdog organization dedicated to ensuring consumers get affordable and dignified funerals. For more information check out the FCA web site www.funerals.org. Next week he’ll tell readers how to avoid some of these outrages.
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Pain Meds: How to Get ThemFriday, July 18th, 2008It’s important for anyone who receives an unhappy diagnosis to realize that although the phrase ”terminal illness” isn’t exactly a mood-enhancer, it also doesn’t necessarily signal a future of bad pain. Pancreatic cancer patients, for example, often experience no pain. But for those of you who are experiencing pain — or are friends or relatives of those who may be in pain — it’s equally vital to know that it can be managed. And by “managed” (a classic hospice word which always drives me nuts), I mean bad pain can almost certainly be relieved. Almost 90 percent of all patients will find this to be true. So that’s a big, rousing, heartening number. In which case, you might be asking yourself, ‘Why can’t my pain be relieved?’“ And the answer is, almost always, because your doctor or nurse either doesn’t know how to do it; or because they refuse to do it. Why do so many medical professionals fail to provide adequate pain medication? Because — and I know this might make you cringe — they still believe, all evidence to the contrary, that somehow or other the very sick will get addicted to the drugs. Or they simply don’t know much about the best meds: methodone (which treats more kinds of pain than any other narcotic) and morphine among them. Or they don’t provide enough of the medication to make a difference. If you happen to be going to a clueless medical professional, change doctors at once. And always remember: not long ago a doctor in California who provided inadequate pain relief to a patient dying of lung cancer, was sued so successfully by that patient’s family that California now mandates that physicians take pain management education courses. A reference to that landmark case might alter your physician’s notions about how to treat your symptoms. Above all, try hospice care. Hospice professionals seem to know and care a lot more about pain than most others.
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The Most Explosive QuestionThursday, July 10th, 2008Just about every other week a reader writes in with some version of the same question: Who, in the event of an unbearable terminal illness, has the right to shorten a life? And just about every other week that question sent me scrambling for answers. Two weeks ago, I was lucky enough to find myself at the Funeral Consumers Alliance conference in Seattle where Kathryn Tucker spoke, and some of those questions were answered. Tucker is not only a law professor, she also successfully defended Oregon’s Right to Die law before the Supreme Court, which is pretty narrow and applies, as its name might imply, only to Oregon residents. Here’s the gist of what she told us: A mentally competent patient with a terminal illness wants a feeding tube removed, which would precipitate death. Does she have that right? The Supreme Court says, Yes. A patient has lost cognitive function and is in a vegetative state. Her family is in complete agreement that her ventilator be removed. Do they have that right? Yes. The same patient in the same vegitative state — only this time, the family members can’t agree on what should or should not be done. And the patient has left no Living Will. The result? You very likely already know the answer. Disaster. And perhaps years of protracted legal wrangling. And finally: a patient, dying of lung cancer in unrelieved pain. Does he have the right to aggressive pain management? The answer, at least in California, is now: Yes. These instances might not provide a lot of solace in all cases for the terminally ill who reside outside of Oregon or California. But they do indicate that slowly (very slowly) the law is siding with the wishes of the patient. And they also prove once again that the smartest thing all of us can do while we’re still healthy is to make legal provisions for the day when we are not. So make a Living Will. Spell everything out. And tell your family. Today.
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