Shopping for a Good End
by Judy Bachrach
MAY 15, 2009 TAGS:
At least twice a week, someone e-mails me about a mother, brother, best friend – someone dear to them -- who is a) terminally ill and b) might want to spend a few last weeks or days, as the writer often puts it, “in a good hospice.” How to find such a place? the writer inquires. And at least twice a week I end up explaining the details of what exactly hospice care is. Only after that explanation can I offer a primer in what I like to call Hospice Shopping.
Around 1.3 million Americans are receiving hospice care these days – it is, you might say, one of the great American success stories, because three decades ago few in the United States even knew what a hospice was. Nonetheless there is still a lot of misinformation about hospices among the still-healthy. For one thing, it is the rare patient who will ever see the inside of an IPU (hospice-speak for “in-patient unit”): that’s usually reserved for someone whose pain has proved unusually obdurate, has acute breathing difficulties or other emergencies. For another, hospice care, generally administered in the patient’s home, is really not intended to last just a few bare weeks, much less days. Brief hospice care is bad hospice care.
Let me explain, because part of the problem here is semantics. Hospices have nothing to do with hospitals (even though, to make things even more confusing, certain very large hospitals do have hospice units). A patient generally goes to a hospital to get cured, or at least improved. A patient accepts hospice care in order to die well.
How exactly do you die well? By receiving help from those who are trained to alleviate pain and nausea. One great thing about hospices: Their nurses are usually superbly knowledgeable about how to administer extremely potent pain meds – there’s none of that I-don’t-want-you-to-get-addicted idiocy on the part of medical personnel, which you certainly find elsewhere. And they’re also adept at combating some of the extremely uncomfortable side effects of morphine, the most common of which is constipation (Its cure? Small sugar-coated balls of petroleum jelly, properly chilled, in case you’re interested…)
However, palliative relief isn’t the only specialty of hospice personnel. Fear, the most common companion of impending death, is also addressed – and not just with tranquilizers (although that’s certainly a part of it), but also by providing the patient with sensible, compassionate companions. These include volunteers, social workers, and, if the patient requests one, a spiritual counselor. Those caregivers need time to work effectively with the dying, which is why seven paltry days of hospice care, which is what one-third of all patients get, is simply not enough. Since Medicare pays for six months of hospice care, as do most private insurers, I say: Go for it.
But how does the patient – or the patient’s family – choose the best hospice care? How, in other words, to Hospice Shop? Here are a few tips.
• Tour your area’s hospices while you’re healthy. I realize this advice flies flat in the face of human nature. Who wants to devote a few sunny days to hospice-shopping when you could be lounging on a beach, reading a great book? But think of it this way: You toured prospective colleges for your kids well before they were about to graduate from high school, didn’t you? You didn’t wait until the summer after senior year to figure out which schools suited them best. You checked out the neighborhood before settling on a new apartment. You asked friends for advice in the final selection. It makes at least as much sense for your own future to consult friends whose relatives experienced local hospice care; and then phone those local hospices while you still have the strength and vitality to visit them. You may never need a hospice, of course. You might die in your sleep. But consider the odds: Only 10 percent of all Americans die suddenly. Maybe you’ll have that kind of luck. But what about your spouse? Your mother?
• Don’t hesitate, during your bouts of hospice shopping, to ask the baldest, most difficult questions of personnel, without hesitation or apology. (What’s the worst that can happen, if some hospice workers get offended? Think they’ll blackball you when the Grim Reaper shows up? Reject all that money from Medicaid?) Probe away while you’re young (ish) and lucid: How many volunteers does the hospice have on call? How many nurses? What about weekend care, which is a problem at certain hospices all too often?
• Above all, during your tour, take a few volunteers aside and pepper them with inquiries. Volunteers have absolutely nothing to lose by answering honestly since they are … unpaid. And they are unusually good resources for stuff you might never think to ask: How good is the hospice food? How competent, swift and kind are the nurse’s aides – the people who make the beds, serve and remove the food trays? (I’ve seen breakfast trays languish in the rooms of unconscious patients through lunch.) How comfortable are the beds? Is there a foam pad or an air mattress that might reduce bed sores? If you can’t find any volunteers when you show up, that hospice has a big problem.
• While you’re touring the IPU (the place you’ll likely never see again), check out the ambiance. And I don’t mean simply to make sure the place is hygienic, although that is important. Are the walls freshly painted? Is there artwork on them? Are towels fluffy? Is there soap in the bathrooms? How a hospice keeps its IPU is a fair reflection of how it treats its patients.
• This tip comes to me, courtesy of an experienced hospice nurse in the rural Midwest: Make sure, before choosing any hospice, that at least some of its personnel, especially the nurses and volunteers, live pretty near you. A volunteer who has to travel miles and miles to visit you, may grow weary of doing so – and volunteers are the people the terminally ill see most often. A nurse may not be able to titrate your new pain medication, if she has to drive for an hour through a snow storm to do so.
• Think of your relatives. A good hospice is one that not only offers help to family members while the patient is around, but also, after he dies, giving bereavement counseling. Great hospices actually phone relatives after a patient’s death to find out how they’re doing.
• And finally: Try finding a consumer’s report comparing and contrasting hospices: their services, their efficiency, their cost. And I mean that in its most sarcastic sense: Try finding any survey that might help the consumer – meaning almost all of us – decide which hospice is best. There aren’t any at present. The American Hospice Foundation tells me that it is working on just such a project, but it appears to be taking a lo-o-ong time. So right now and for the foreseeable future, I’m afraid you’re going to have to be your own best dying advocate.
• Do it now.
Around 1.3 million Americans are receiving hospice care these days – it is, you might say, one of the great American success stories, because three decades ago few in the United States even knew what a hospice was. Nonetheless there is still a lot of misinformation about hospices among the still-healthy. For one thing, it is the rare patient who will ever see the inside of an IPU (hospice-speak for “in-patient unit”): that’s usually reserved for someone whose pain has proved unusually obdurate, has acute breathing difficulties or other emergencies. For another, hospice care, generally administered in the patient’s home, is really not intended to last just a few bare weeks, much less days. Brief hospice care is bad hospice care.Let me explain, because part of the problem here is semantics. Hospices have nothing to do with hospitals (even though, to make things even more confusing, certain very large hospitals do have hospice units). A patient generally goes to a hospital to get cured, or at least improved. A patient accepts hospice care in order to die well.
How exactly do you die well? By receiving help from those who are trained to alleviate pain and nausea. One great thing about hospices: Their nurses are usually superbly knowledgeable about how to administer extremely potent pain meds – there’s none of that I-don’t-want-you-to-get-addicted idiocy on the part of medical personnel, which you certainly find elsewhere. And they’re also adept at combating some of the extremely uncomfortable side effects of morphine, the most common of which is constipation (Its cure? Small sugar-coated balls of petroleum jelly, properly chilled, in case you’re interested…)
However, palliative relief isn’t the only specialty of hospice personnel. Fear, the most common companion of impending death, is also addressed – and not just with tranquilizers (although that’s certainly a part of it), but also by providing the patient with sensible, compassionate companions. These include volunteers, social workers, and, if the patient requests one, a spiritual counselor. Those caregivers need time to work effectively with the dying, which is why seven paltry days of hospice care, which is what one-third of all patients get, is simply not enough. Since Medicare pays for six months of hospice care, as do most private insurers, I say: Go for it.
But how does the patient – or the patient’s family – choose the best hospice care? How, in other words, to Hospice Shop? Here are a few tips.
• Tour your area’s hospices while you’re healthy. I realize this advice flies flat in the face of human nature. Who wants to devote a few sunny days to hospice-shopping when you could be lounging on a beach, reading a great book? But think of it this way: You toured prospective colleges for your kids well before they were about to graduate from high school, didn’t you? You didn’t wait until the summer after senior year to figure out which schools suited them best. You checked out the neighborhood before settling on a new apartment. You asked friends for advice in the final selection. It makes at least as much sense for your own future to consult friends whose relatives experienced local hospice care; and then phone those local hospices while you still have the strength and vitality to visit them. You may never need a hospice, of course. You might die in your sleep. But consider the odds: Only 10 percent of all Americans die suddenly. Maybe you’ll have that kind of luck. But what about your spouse? Your mother?
• Don’t hesitate, during your bouts of hospice shopping, to ask the baldest, most difficult questions of personnel, without hesitation or apology. (What’s the worst that can happen, if some hospice workers get offended? Think they’ll blackball you when the Grim Reaper shows up? Reject all that money from Medicaid?) Probe away while you’re young (ish) and lucid: How many volunteers does the hospice have on call? How many nurses? What about weekend care, which is a problem at certain hospices all too often?
• Above all, during your tour, take a few volunteers aside and pepper them with inquiries. Volunteers have absolutely nothing to lose by answering honestly since they are … unpaid. And they are unusually good resources for stuff you might never think to ask: How good is the hospice food? How competent, swift and kind are the nurse’s aides – the people who make the beds, serve and remove the food trays? (I’ve seen breakfast trays languish in the rooms of unconscious patients through lunch.) How comfortable are the beds? Is there a foam pad or an air mattress that might reduce bed sores? If you can’t find any volunteers when you show up, that hospice has a big problem.• While you’re touring the IPU (the place you’ll likely never see again), check out the ambiance. And I don’t mean simply to make sure the place is hygienic, although that is important. Are the walls freshly painted? Is there artwork on them? Are towels fluffy? Is there soap in the bathrooms? How a hospice keeps its IPU is a fair reflection of how it treats its patients.
• This tip comes to me, courtesy of an experienced hospice nurse in the rural Midwest: Make sure, before choosing any hospice, that at least some of its personnel, especially the nurses and volunteers, live pretty near you. A volunteer who has to travel miles and miles to visit you, may grow weary of doing so – and volunteers are the people the terminally ill see most often. A nurse may not be able to titrate your new pain medication, if she has to drive for an hour through a snow storm to do so.
• Think of your relatives. A good hospice is one that not only offers help to family members while the patient is around, but also, after he dies, giving bereavement counseling. Great hospices actually phone relatives after a patient’s death to find out how they’re doing.
• And finally: Try finding a consumer’s report comparing and contrasting hospices: their services, their efficiency, their cost. And I mean that in its most sarcastic sense: Try finding any survey that might help the consumer – meaning almost all of us – decide which hospice is best. There aren’t any at present. The American Hospice Foundation tells me that it is working on just such a project, but it appears to be taking a lo-o-ong time. So right now and for the foreseeable future, I’m afraid you’re going to have to be your own best dying advocate.
• Do it now.
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