Guest guest Posted January 24, 2011 Report Share Posted January 24, 2011 This was an interesting article and it is a question that I hope I never have to confront with my mom. While somewhat relevant, I was surprised by the mention of Obama’s health care changes made by Ms. Span. So, the doctor consult won’t be covered?? Doesn’t Ms. Span know that this conversation won’t be necessary because of the new “Death Panel†that is part and parcel of Obama’s health care changes? *I am rolling my eyes* From: Robin Riddle Sent: Monday, January 24, 2011 2:10 PM To: rriddle@... Subject: " When They Cannot Eat " This is a good short article on the decision surrounding whether a loved one should get a feeding tube, when the decision is left up to a family member (with power of attorney). Here's an excerpt that certainly echoes what we hear in the local support group: " Few questions are more upsetting to families than this one. Providing nourishment is, from the first moments of life, an elemental way for humans to demonstrate love and care. Saying no to a feeding tube can feel tantamount to allowing a loved one to starve. I sometimes wonder if it’s actually easier, emotionally, to decline CPR or a ventilator; we may not feel responsible for keeping relatives’ hearts beating or lungs functioning, but we have trouble overriding our impulse to feed them. " The article discusses the case when a feeding tube may be temporary (such as le Giffords) and the other end of the spectrum when a feeding tube near the end of one's life has benefits that are " hard to discern. " The gray area, of course, is in between. Robin http://newoldage.blogs.nytimes.com/2011/01/24/when-they-cannot-eat/ The New Old Age: Caring and Coping When They Cannot Eat By a Span The New York Times January 24, 2011, 12:44 PM Minarick has had a tough few weeks, grappling with one of the crossroads decisions that family members so often shoulder for ailing elders. “I’ve been a wreck,” she said. She has known and loved her Uncle Lawrence, now 87 and living in a Virginia nursing home, since he moved into her parents’ home when she was a little girl. A onetime coal miner, he has always needed family help — a cyst in his brain caused lifelong cognitive difficulties. He hasn’t eaten solid food for three years, Ms. Minarick told me, but has done reasonably well on thickened liquids. And at their weekly visits, he can still talk with her, though mostly about the past. Lately, however, he’s grown awfully thin. When his weight reached 132 pounds, down from 165, she took her concerns to the staff. “He might be a candidate for a feeding tube,” a nurse suggested. Sometimes, the nurse added, people improve and start eating again and the tube can be removed. “I just don’t think that’s very likely,” Ms. Minarick told me. She knows a fair amount about the pluses and minuses of tube-feeding in the elderly, having faced a similar decision for her father last spring. (I probably should have said that when it comes to caregiving, Ms. Minarick, a federal employee in Washington, has had a tough 10 years.) She also knows that her uncle’s dementia will not abate. Few questions are more upsetting to families than this one. Providing nourishment is, from the first moments of life, an elemental way for humans to demonstrate love and care. Saying no to a feeding tube can feel tantamount to allowing a loved one to starve. I sometimes wonder if it’s actually easier, emotionally, to decline CPR or a ventilator; we may not feel responsible for keeping relatives’ hearts beating or lungs functioning, but we have trouble overriding our impulse to feed them. “Maybe he’ll just go peacefully in his sleep and not be subjected to this,” Ms. Minarick said, struggling to figure out what to do for her uncle. Her voice on the phone sounded quavery. “I’m 99 percent confident that a feeding tube is not the right thing, but there’s always that doubt.” Let’s be clear: Many times, families will be grateful that doctors know how to insert a tube directly into the stomach to deliver food and liquids. It makes sense for an accident or stroke victim who appears likely to recover, for example, or for someone with Parkinson’s disease who can’t swallow but otherwise can function and enjoy her life. “Someone like le Giffords needs a feeding tube,” said Dr. , a senior scientist at the Hebrew SeniorLife Institute for Aging Research in Boston, who has studied tube use for years. But for people with irreversible conditions who are nearing death, the gains are harder to discern, and the disadvantages mount. Dr. ticked off the research findings for me. “We can’t demonstrate any survival benefit,” she said, meaning there’s no evidence the procedure can prolong life. It’s clear, though, that the tubes don’t prevent aspiration — patients can still draw saliva or regurgitated bits of food into their lungs, which frequently causes pneumonia. The tubes occasionally leak or become blocked or infected, necessitating hospitalizations; they can cause nausea, vomiting or diarrhea. Patients with advanced dementia can’t understand what’s going on, so “they tend to get agitated and try to pull out the tubes,” Dr. said, which in turn leads to the use of restraints or psychotropic drugs. Families often fear that without artificial nutrition and hydration, their relatives will suffer from hunger or thirst. But when researchers talked to cancer patients who were close to death but lucid, Dr. said, they didn’t describe painful sensations. She recommends this guide from the Ottawa Hospital Research Institute to help caregivers reach decisions on tube-feeding when their relatives can’t communicate their own opinions. This, in part, was what troubled Ms. Minarick and her sister, providentially a nurse in a gastroenterology lab. They had declined a feeding tube for their father when a fall caused a serious brain hemorrhage, partly because his doctors explained that there was little hope for recovery, but mostly because he had made his wishes clear in a living will. “It’s horrible stuff to have to do,” Ms. Minarick said. But because she knew she was following his instructions, “I didn’t find it a struggle.” Her father died 10 days later. Her uncle has no such document; years ago, a lawyer said he wasn’t competent to make such decisions. Though her uncle had told her he didn’t like hospitals and wanted to die at home, in the old-fashioned way he remembered from boyhood, Ms. Minarick has power of attorney but no advance directive. That makes the decision harder this time. So she is grateful for a compassionate doctor she’d spoken to occasionally but never met, the family practitioner who cares for the patients at her uncle’s nursing home. He spent almost half an hour talking with her last week about the feeding tube and other options, and about her uncle’s comfort — her overriding concern. (Brief digression: Had the Obama administration not stripped the provision from the new health care law, Medicare would reimburse doctors for such lengthy discussions about end-of-life choices. Now, it won’t.) Ms. Minarick and the doctor finally agreed to forgo the feeding tube and add a “do not hospitalize” order to her uncle’s existing “do not resuscitate.” She and a friend will come several times a week to see if they can persuade Uncle Lawrence to drink more chocolate-flavored Ensure. Meanwhile, the doctor will certify him for hospice care. “I thanked him profusely,” Ms. Minarick said. “It’s distressing, but I’m also very relieved.” a Span is the author of “When the Time Comes: Families With Aging Parents Share Their Struggles and Solutions.” Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2011 Report Share Posted January 24, 2011 I think it was given away to appease the other side of the aisle. This is the part of health care that they were screaming were " death panels " . If you don't like it, please tell your representative and your senators. It was a good thing and it got dumped. It was very misunderstood and because it is such a highly emotional issue they really made political hay out of it. Nan > > This was an interesting article and it is a question that I hope I never have to confront with my mom. > > While somewhat relevant, I was surprised by the mention of Obama’s health care changes made by Ms. Span. So, the doctor consult won’t be covered?? Doesn’t Ms. Span know that this conversation won’t be necessary because of the new “Death Panel†that is part and parcel of Obama’s health care changes? *I am rolling my eyes* > > From: Robin Riddle > Sent: Monday, January 24, 2011 2:10 PM > To: rriddle@... > Subject: " When They Cannot Eat " > > > This is a good short article on the decision > surrounding whether a loved one should get a > feeding tube, when the decision is left up to a > family member (with power of attorney). Here's > an excerpt that certainly echoes what we hear in the local support group: > > " Few questions are more upsetting to families > than this one. Providing nourishment is, from the > first moments of life, an elemental way for > humans to demonstrate love and care. Saying no to > a feeding tube can feel tantamount to allowing a > loved one to starve. I sometimes wonder if itÂ's > actually easier, emotionally, to decline CPR or a > ventilator; we may not feel responsible for > keeping relativesÂ' hearts beating or lungs > functioning, but we have trouble overriding our impulse to feed them. " > > The article discusses the case when a feeding > tube may be temporary (such as le > Giffords) and the other end of the spectrum when > a feeding tube near the end of one's life has > benefits that are " hard to discern. " The gray area, of course, is in between. > > Robin > > http://newoldage.blogs.nytimes.com/2011/01/24/when-they-cannot-eat/ > > The New Old Age: Caring and Coping > When They Cannot Eat > By a Span > The New York Times > > January 24, 2011, 12:44 PM > > Minarick has had a tough few weeks, > grappling with one of the crossroads decisions > that family members so often shoulder for ailing > elders.  " IÂ've been a wreck, " she said. > > She has known and loved her Uncle Lawrence, now > 87 and living in a Virginia nursing home, since > he moved into her parentsÂ' home when she was a little girl. > > A onetime coal miner, he has always needed family > help — a cyst in his brain caused lifelong > cognitive difficulties. He hasnÂ't eaten solid > food for three years, Ms. Minarick told me, but > has done reasonably well on thickened liquids. > And at their weekly visits, he can still talk > with her, though mostly about the past. > > Lately, however, heÂ's grown awfully thin. When > his weight reached 132 pounds, down from 165, she > took her concerns to the staff.  " He might be a > candidate for a feeding tube, " a nurse suggested. > Sometimes, the nurse added, people improve and > start eating again and the tube can be removed. > >  " I just donÂ't think thatÂ's very likely, " Ms. > Minarick told me. She knows a fair amount about > the pluses and minuses of tube-feeding in the > elderly, having faced a similar decision for her > father last spring. (I probably should have said > that when it comes to caregiving, Ms. Minarick, a > federal employee in Washington, has had a tough 10 years.) > > She also knows that her uncleÂ's dementia will not abate. > > Few questions are more upsetting to families than > this one. Providing nourishment is, from the > first moments of life, an elemental way for > humans to demonstrate love and care. Saying no to > a feeding tube can feel tantamount to allowing a > loved one to starve. I sometimes wonder if itÂ's > actually easier, emotionally, to decline CPR or a > ventilator; we may not feel responsible for > keeping relativesÂ' hearts beating or lungs > functioning, but we have trouble overriding our impulse to feed them. > >  " Maybe heÂ'll just go peacefully in his sleep and > not be subjected to this, " Ms. Minarick said, > struggling to figure out what to do for her > uncle. Her voice on the phone sounded quavery. >  " IÂ'm 99 percent confident that a feeding tube is > not the right thing, but thereÂ's always that doubt. " > > LetÂ's be clear: Many times, families will be > grateful that doctors know how to insert a tube > directly into the stomach to deliver food and > liquids. It makes sense for an accident or stroke > victim who appears likely to recover, for > example, or for someone with ParkinsonÂ's disease > who canÂ't swallow but otherwise can function and enjoy her life. > >  " Someone like le Giffords needs a feeding > tube, " said Dr. , a senior > scientist at the Hebrew SeniorLife Institute for > Aging Research in Boston, who has studied tube > use for years. But for people with irreversible > conditions who are nearing death, the gains are > harder to discern, and the disadvantages mount. > > Dr. ticked off the research findings for > me.  " We canÂ't demonstrate any survival benefit, " > she said, meaning thereÂ's no evidence the > procedure can prolong life. ItÂ's clear, though, > that the tubes donÂ't prevent aspiration — > patients can still draw saliva or regurgitated > bits of food into their lungs, which frequently causes pneumonia. > > The tubes occasionally leak or become blocked or > infected, necessitating hospitalizations; they > can cause nausea, vomiting or diarrhea. Patients > with advanced dementia canÂ't understand whatÂ's > going on, so  " they tend to get agitated and try > to pull out the tubes, " Dr. said, which > in turn leads to the use of restraints or psychotropic drugs. > > Families often fear that without artificial > nutrition and hydration, their relatives will > suffer from hunger or thirst. But when > researchers talked to cancer patients who were > close to death but lucid, Dr. said, they > didnÂ't describe painful sensations. > > She recommends this guide from the Ottawa > Hospital Research Institute to help caregivers > reach decisions on tube-feeding when their > relatives canÂ't communicate their own opinions. > > This, in part, was what troubled Ms. Minarick and > her sister, providentially a nurse in a gastroenterology lab. > > They had declined a feeding tube for their father > when a fall caused a serious brain hemorrhage, > partly because his doctors explained that there > was little hope for recovery, but mostly because > he had made his wishes clear in a living will. > >  " ItÂ's horrible stuff to have to do, " Ms. Minarick > said. But because she knew she was following his > instructions,  " I didnÂ't find it a struggle. " Her father died 10 days later. > > Her uncle has no such document; years ago, a > lawyer said he wasnÂ't competent to make such > decisions. Though her uncle had told her he > didnÂ't like hospitals and wanted to die at home, > in the old-fashioned way he remembered from > boyhood, Ms. Minarick has power of attorney but > no advance directive. That makes the decision harder this time. > > So she is grateful for a compassionate doctor > sheÂ'd spoken to occasionally but never met, the > family practitioner who cares for the patients at > her uncleÂ's nursing home. He spent almost half an > hour talking with her last week about the feeding > tube and other options, and about her uncleÂ's comfort — her overriding concern. > > (Brief digression: Had the Obama administration > not stripped the provision from the new health > care law, Medicare would reimburse doctors for > such lengthy discussions about end-of-life choices. Now, it wonÂ't.) > > Ms. Minarick and the doctor finally agreed to > forgo the feeding tube and add a  " do not > hospitalize " order to her uncleÂ's existing  " do > not resuscitate. " She and a friend will come > several times a week to see if they can persuade > Uncle Lawrence to drink more chocolate-flavored Ensure. > > Meanwhile, the doctor will certify him for hospice care. > >  " I thanked him profusely, " Ms. Minarick said. >  " ItÂ's distressing, but IÂ'm also very relieved. " > > a Span is the author of  " When the Time Comes: > Families With Aging Parents Share Their Struggles and Solutions. " > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2011 Report Share Posted January 25, 2011 Wow, what a beautiful article and very well presented. As a nurse of over 37 years, I rarely see the doctors taking the time to have those discussions with their patients. I find that doctors for the most part , or health care professionals lack the time and energy to have these " talks " . THe health care delivery system is broken and because of financial constraints, most, not all, health care providers just go through te motions and provide what ever care they deem necessary. THis is done without giving thought to taking time to educating the families fully on the complications and side effects of any life extending procedure. I cannot tell you how many times, I have heard from a patient or a family member, well, I would not have done this had I know that this was a possibility. I really feel and I strongly feel that it is our responsibility as health care consumers to ask the hard questions to the health care providers. Ask questions and do the research until you feel that you understand what it is you should expect - the good, the bad, the ugly. Many times, families hear the good and do not consider the bad- the results of complications etc. We have become a society with such a fear of dying that we go to such great lengths to avoid it. we may delay, we never avoid. We need to become a society that talks more openly about death and dying, take the fear out of it. Demystify it. Diane Carbo www.aginghomehealthcare.com www.dementiacaresecrets.com t is such a highly emotional issue they really made political hay out of it. Nan > > > > > > This was an interesting article and it is a question that I hope I never have to confront with my mom. > > > > While somewhat relevant, I was surprised by the mention of Obama’s health care changes made by Ms. Span. So, the doctor consult won’t be covered?? Doesn’t Ms. Span know that this conversation won’t be necessary because of the new “Death Panel†that is part and parcel of Obama’s health care changes? *I am rolling my eyes* > > > > From: Robin Riddle > > Sent: Monday, January 24, 2011 2:10 PM > > To: rriddle@ > > Subject: " When They Cannot Eat " > > > > > > This is a good short article on the decision > > surrounding whether a loved one should get a > > feeding tube, when the decision is left up to a > > family member (with power of attorney). Here's > > an excerpt that certainly echoes what we hear in the local support group: > > > > " Few questions are more upsetting to families > > than this one. Providing nourishment is, from the > > first moments of life, an elemental way for > > humans to demonstrate love and care. Saying no to > > a feeding tube can feel tantamount to allowing a > > loved one to starve. I sometimes wonder if it�'s > > actually easier, emotionally, to decline CPR or a > > ventilator; we may not feel responsible for > > keeping relatives�' hearts beating or lungs > > functioning, but we have trouble overriding our impulse to feed them. " > > > > The article discusses the case when a feeding > > tube may be temporary (such as le > > Giffords) and the other end of the spectrum when > > a feeding tube near the end of one's life has > > benefits that are " hard to discern. " The gray area, of course, is in between. > > > > Robin > > > > http://newoldage.blogs.nytimes.com/2011/01/24/when-they-cannot-eat/ > > > > The New Old Age: Caring and Coping > > When They Cannot Eat > > By a Span > > The New York Times > > > > January 24, 2011, 12:44 PM > > > > Minarick has had a tough few weeks, > > grappling with one of the crossroads decisions > > that family members so often shoulder for ailing > > elders. � " I�'ve been a wreck,� " she said. > > > > She has known and loved her Uncle Lawrence, now > > 87 and living in a Virginia nursing home, since > > he moved into her parents�' home when she was a little girl. > > > > A onetime coal miner, he has always needed family > > help — a cyst in his brain caused lifelong > > cognitive difficulties. He hasn�'t eaten solid > > food for three years, Ms. Minarick told me, but > > has done reasonably well on thickened liquids. > > And at their weekly visits, he can still talk > > with her, though mostly about the past. > > > > Lately, however, he�'s grown awfully thin. When > > his weight reached 132 pounds, down from 165, she > > took her concerns to the staff. � " He might be a > > candidate for a feeding tube,� " a nurse suggested. > > Sometimes, the nurse added, people improve and > > start eating again and the tube can be removed. > > > > � " I just don�'t think that�'s very likely,� " Ms. > > Minarick told me. She knows a fair amount about > > the pluses and minuses of tube-feeding in the > > elderly, having faced a similar decision for her > > father last spring. (I probably should have said > > that when it comes to caregiving, Ms. Minarick, a > > federal employee in Washington, has had a tough 10 years.) > > > > She also knows that her uncle�'s dementia will not abate. > > > > Few questions are more upsetting to families than > > this one. Providing nourishment is, from the > > first moments of life, an elemental way for > > humans to demonstrate love and care. Saying no to > > a feeding tube can feel tantamount to allowing a > > loved one to starve. I sometimes wonder if it�'s > > actually easier, emotionally, to decline CPR or a > > ventilator; we may not feel responsible for > > keeping relatives�' hearts beating or lungs > > functioning, but we have trouble overriding our impulse to feed them. > > > > � " Maybe he�'ll just go peacefully in his sleep and > > not be subjected to this,� " Ms. Minarick said, > > struggling to figure out what to do for her > > uncle. Her voice on the phone sounded quavery. > > � " I�'m 99 percent confident that a feeding tube is > > not the right thing, but there�'s always that doubt.� " > > > > Let�'s be clear: Many times, families will be > > grateful that doctors know how to insert a tube > > directly into the stomach to deliver food and > > liquids. It makes sense for an accident or stroke > > victim who appears likely to recover, for > > example, or for someone with Parkinson�'s disease > > who can�'t swallow but otherwise can function and enjoy her life. > > > > � " Someone like le Giffords needs a feeding > > tube,� " said Dr. , a senior > > scientist at the Hebrew SeniorLife Institute for > > Aging Research in Boston, who has studied tube > > use for years. But for people with irreversible > > conditions who are nearing death, the gains are > > harder to discern, and the disadvantages mount. > > > > Dr. ticked off the research findings for > > me. � " We can�'t demonstrate any survival benefit,� " > > she said, meaning there�'s no evidence the > > procedure can prolong life. It�'s clear, though, > > that the tubes don�'t prevent aspiration — > > patients can still draw saliva or regurgitated > > bits of food into their lungs, which frequently causes pneumonia. > > > > The tubes occasionally leak or become blocked or > > infected, necessitating hospitalizations; they > > can cause nausea, vomiting or diarrhea. Patients > > with advanced dementia can�'t understand what�'s > > going on, so � " they tend to get agitated and try > > to pull out the tubes,� " Dr. said, which > > in turn leads to the use of restraints or psychotropic drugs. > > > > Families often fear that without artificial > > nutrition and hydration, their relatives will > > suffer from hunger or thirst. But when > > researchers talked to cancer patients who were > > close to death but lucid, Dr. said, they > > didn�'t describe painful sensations. > > > > She recommends this guide from the Ottawa > > Hospital Research Institute to help caregivers > > reach decisions on tube-feeding when their > > relatives can�'t communicate their own opinions. > > > > This, in part, was what troubled Ms. Minarick and > > her sister, providentially a nurse in a gastroenterology lab. > > > > They had declined a feeding tube for their father > > when a fall caused a serious brain hemorrhage, > > partly because his doctors explained that there > > was little hope for recovery, but mostly because > > he had made his wishes clear in a living will. > > > > � " It�'s horrible stuff to have to do,� " Ms. Minarick > > said. But because she knew she was following his > > instructions, � " I didn�'t find it a struggle.� " Her father died 10 days later. > > > > Her uncle has no such document; years ago, a > > lawyer said he wasn�'t competent to make such > > decisions. Though her uncle had told her he > > didn�'t like hospitals and wanted to die at home, > > in the old-fashioned way he remembered from > > boyhood, Ms. Minarick has power of attorney but > > no advance directive. That makes the decision harder this time. > > > > So she is grateful for a compassionate doctor > > she�'d spoken to occasionally but never met, the > > family practitioner who cares for the patients at > > her uncle�'s nursing home. He spent almost half an > > hour talking with her last week about the feeding > > tube and other options, and about her uncle�'s comfort — her overriding concern. > > > > (Brief digression: Had the Obama administration > > not stripped the provision from the new health > > care law, Medicare would reimburse doctors for > > such lengthy discussions about end-of-life choices. Now, it won�'t.) > > > > Ms. Minarick and the doctor finally agreed to > > forgo the feeding tube and add a � " do not > > hospitalize� " order to her uncle�'s existing � " do > > not resuscitate.� " She and a friend will come > > several times a week to see if they can persuade > > Uncle Lawrence to drink more chocolate-flavored Ensure. > > > > Meanwhile, the doctor will certify him for hospice care. > > > > � " I thanked him profusely,� " Ms. Minarick said. > > � " It�'s distressing, but I�'m also very relieved.� " > > > > a Span is the author of � " When the Time Comes: > > Families With Aging Parents Share Their Struggles and Solutions.� " > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.