Imaginative Caregiving for the Cancer Patient
by Susan Gubar
New York Times, April 19, 2018
After the drama of diagnosis passes and the preliminary offers of assistance dissipate, a few hardy souls hang in with cancer patients for the long haul. If we are lucky, they tender surprisingly creative acts and gifts.
Imaginative caregiving is welcome because of the debilitation of prolonged treatment but also because of the barrage of clichéd responses patients receive from chance acquaintances. There I am, minding my own business in the drugstore, when someone pops up: “My aunt had your kind of cancer and died in two months.” “You don’t look sick!” “Did you eat red meat?” “The good Lord never gives us more than we can bear.” Those of us with chronic disease learn to block out this type of noise. Read on. . . .
Imaginative caregiving is welcome because of the debilitation of prolonged treatment but also because of the barrage of clichéd responses patients receive from chance acquaintances. There I am, minding my own business in the drugstore, when someone pops up: “My aunt had your kind of cancer and died in two months.” “You don’t look sick!” “Did you eat red meat?” “The good Lord never gives us more than we can bear.” Those of us with chronic disease learn to block out this type of noise. Read on. . . .
Bob Carey’s Tutu Project
Alzheimer’s?
Your Paperwork May Not Be in Order
by Jane E. Brody
New York Times,APRIL 30, 2018
I had hoped that by now most adults in this country would have completed an advance directive for medical care and assigned someone they trusted to represent their wishes if and when they are unable to speak for themselves. Alas, at last count, barely more than one-third have done so, with the rest of Americans leaving it up to the medical profession and ill-prepared family members to decide when and how to provide life-prolonging treatments.
But even the many who, like me, have done due diligence — completed the appropriate forms, selected a health care agent and expressed their wishes to whoever may have to make medical decisions for them — may not realize that the documents typically do not cover a likely scenario for one of the leading causes of death in this country: dementia. Missing in standard documents, for example, are specific instructions about providing food and drink by hand as opposed to through a tube.
Advanced dementia, including Alzheimer’s disease, is the sixth leading cause of death overall in the United States. It is the fifth leading cause for people over 65, and the third for those over 85. Yet once the disease approaches its terminal stages, patients are unable to communicate their desires for or against life-prolonging therapies, some of which can actually make their last days more painful and hasten their demise.
End of Life Choices New York is trying to change that and has created an advance directive that it hopes will become a prototype for the rest of the country. (Washington State has already developed its own, though somewhat different, document.)
Judith Schwarz, clinical director of the New York organization, said that New Yorkers seeking the organization’s advice were the genesis of the new document. “They said things like, ‘Oh my God, what can I do? I’ve just been told I have Alzheimer’s disease. I saw my grandfather die from it and I don’t want to die that way,’” she told me.
“People should at least understand what the normal process of advanced dementia is about,” Dr. Schwarz said. “Feeding tubes are not the issue — they’re not done when dementia is terminal. Instead, a caregiver will stand patiently at the bedside and spoon food into your mouth as long as you open it. Opening your mouth when a spoon approaches is a primitive reflex that persists long after you’ve lost the ability to swallow and know what to do with what’s put in your mouth.”
While trying to provide nourishment for a terminally ill person nearing death is commonly done in the name of comfort and caring, if that person cannot benefit from food or drink, it can become quite the opposite. When patients can no longer swallow what they are fed, they may choke and aspirate food or drink into the lungs, resulting in pneumonia that adds to their misery and hastens their death.
Dr. Schwarz’s advice: Complete her organization’s Advance Directive for Receiving Oral Food and Fluids in the Event of Dementia.
“While you retain decision-making capacity,” she explained, “you have every right to decide that you would want to stop all life-prolonging measures, including food and fluid, when they are no longer wanted and can do no good.”
Unlike those with terminal cancer or amyotrophic lateral sclerosis (A.L.S.), diseases in which cognitive function usually remains intact, people in an advanced stage of a dementing illness cannot determine and effectively communicate what they do and do not want done for them. These choices, Dr. Schwarz says, must be made well in advance, especially if they wish to avoid prolonged dying that causes undue suffering for themselves and their loved ones.
Dr. Anne Kenny, a geriatrician and palliative care specialist at the LiveWell Alliance in Plantsville, Conn., said, “With dementia, by the time you get to the point of having to decide what you want done, you’ve largely lost the capacity to do so. Many people don’t realize that making these choices in advance does not cause people to lose hope. It creates more hope because patients know their wishes would be heard and respected instead of deferring to the default position of the medical system, which is longevity at all costs.
“Interviews with families have shown that 90 percent want comfort care at the end of life,” she said. “Only 10 percent would opt for longevity.”
Dr. Kenny said three characteristics define the late stages of dementia, indicating that the patient is nearing the end of life: losing the ability to use the toilet, walk and swallow independently.
“Most deaths from dementia are very peaceful, even beautiful. People slowly shut down,” she explained. “Families are relieved because dementia is so difficult at the end. The second best gift you can give your family is showing them the path you want to follow so they don’t have to choose it for you.”
The new directive not only asks that you record your wishes on the form about oral feeding and hydration near the end of life but also suggests that you create a video — perhaps on a cellphone — that can show institutional caregivers and others that the choice is what you wanted and is consistent with your values.
The patient, when completing the directive and appointing a health care agent, must be cognitively sound. The document is witnessed by independent people and notarized.
The document and its background are available online at End of Life Choices New York; scroll down to the “featured documents” section. It offers two options for patients when they are no longer able to feed themselves or make informed decisions about their care.
COMMENTS
Option A asks that all medications and treatments to prolong life be withheld or withdrawn and that the patient not be fed artificially or by hand “even if I appear to cooperate in being fed by opening my mouth.” Option B asks that assisted oral feedings be done only when the patient appears receptive and cooperative and shows signs of enjoying eating and drinking. Only foods that are enjoyed should be given in any amount wanted and that the patient should not “be coerced, cajoled or in any way forced to eat or drink.”
Dr. Timothy E. Quill, professor of medicine in the Palliative Care Division of the University of Rochester School of Medicine, said that “if the directive leads to families and caregivers erring on the side of comfort and dignity for the patient, it’s a real step forward. It encourages them to follow the guidance of the patient’s ‘now’ self, not the past self.” Providing nourishment in end-stage dementia “should be all about the pleasure of eating, not force-feeding,” he said. “If patients show a strong interest in eating and drinking, it should be given to them.”
But even the many who, like me, have done due diligence — completed the appropriate forms, selected a health care agent and expressed their wishes to whoever may have to make medical decisions for them — may not realize that the documents typically do not cover a likely scenario for one of the leading causes of death in this country: dementia. Missing in standard documents, for example, are specific instructions about providing food and drink by hand as opposed to through a tube.
Advanced dementia, including Alzheimer’s disease, is the sixth leading cause of death overall in the United States. It is the fifth leading cause for people over 65, and the third for those over 85. Yet once the disease approaches its terminal stages, patients are unable to communicate their desires for or against life-prolonging therapies, some of which can actually make their last days more painful and hasten their demise.
End of Life Choices New York is trying to change that and has created an advance directive that it hopes will become a prototype for the rest of the country. (Washington State has already developed its own, though somewhat different, document.)
Judith Schwarz, clinical director of the New York organization, said that New Yorkers seeking the organization’s advice were the genesis of the new document. “They said things like, ‘Oh my God, what can I do? I’ve just been told I have Alzheimer’s disease. I saw my grandfather die from it and I don’t want to die that way,’” she told me.
“People should at least understand what the normal process of advanced dementia is about,” Dr. Schwarz said. “Feeding tubes are not the issue — they’re not done when dementia is terminal. Instead, a caregiver will stand patiently at the bedside and spoon food into your mouth as long as you open it. Opening your mouth when a spoon approaches is a primitive reflex that persists long after you’ve lost the ability to swallow and know what to do with what’s put in your mouth.”
While trying to provide nourishment for a terminally ill person nearing death is commonly done in the name of comfort and caring, if that person cannot benefit from food or drink, it can become quite the opposite. When patients can no longer swallow what they are fed, they may choke and aspirate food or drink into the lungs, resulting in pneumonia that adds to their misery and hastens their death.
Dr. Schwarz’s advice: Complete her organization’s Advance Directive for Receiving Oral Food and Fluids in the Event of Dementia.
“While you retain decision-making capacity,” she explained, “you have every right to decide that you would want to stop all life-prolonging measures, including food and fluid, when they are no longer wanted and can do no good.”
Unlike those with terminal cancer or amyotrophic lateral sclerosis (A.L.S.), diseases in which cognitive function usually remains intact, people in an advanced stage of a dementing illness cannot determine and effectively communicate what they do and do not want done for them. These choices, Dr. Schwarz says, must be made well in advance, especially if they wish to avoid prolonged dying that causes undue suffering for themselves and their loved ones.
Dr. Anne Kenny, a geriatrician and palliative care specialist at the LiveWell Alliance in Plantsville, Conn., said, “With dementia, by the time you get to the point of having to decide what you want done, you’ve largely lost the capacity to do so. Many people don’t realize that making these choices in advance does not cause people to lose hope. It creates more hope because patients know their wishes would be heard and respected instead of deferring to the default position of the medical system, which is longevity at all costs.
“Interviews with families have shown that 90 percent want comfort care at the end of life,” she said. “Only 10 percent would opt for longevity.”
Dr. Kenny said three characteristics define the late stages of dementia, indicating that the patient is nearing the end of life: losing the ability to use the toilet, walk and swallow independently.
“Most deaths from dementia are very peaceful, even beautiful. People slowly shut down,” she explained. “Families are relieved because dementia is so difficult at the end. The second best gift you can give your family is showing them the path you want to follow so they don’t have to choose it for you.”
The new directive not only asks that you record your wishes on the form about oral feeding and hydration near the end of life but also suggests that you create a video — perhaps on a cellphone — that can show institutional caregivers and others that the choice is what you wanted and is consistent with your values.
The patient, when completing the directive and appointing a health care agent, must be cognitively sound. The document is witnessed by independent people and notarized.
The document and its background are available online at End of Life Choices New York; scroll down to the “featured documents” section. It offers two options for patients when they are no longer able to feed themselves or make informed decisions about their care.
COMMENTS
Option A asks that all medications and treatments to prolong life be withheld or withdrawn and that the patient not be fed artificially or by hand “even if I appear to cooperate in being fed by opening my mouth.” Option B asks that assisted oral feedings be done only when the patient appears receptive and cooperative and shows signs of enjoying eating and drinking. Only foods that are enjoyed should be given in any amount wanted and that the patient should not “be coerced, cajoled or in any way forced to eat or drink.”
Dr. Timothy E. Quill, professor of medicine in the Palliative Care Division of the University of Rochester School of Medicine, said that “if the directive leads to families and caregivers erring on the side of comfort and dignity for the patient, it’s a real step forward. It encourages them to follow the guidance of the patient’s ‘now’ self, not the past self.” Providing nourishment in end-stage dementia “should be all about the pleasure of eating, not force-feeding,” he said. “If patients show a strong interest in eating and drinking, it should be given to them.”
A Widow's Food Guide to Grief
by Lisa Kolb
Washington Post, March 27, 2018
There are food guides for everything: the patisseries of Paris, Philly B.Y.O.B.s, farmers markets of California, even cat cafes around the world. But when my husband died a few years ago, and I lost my appetite and my ability to eat in a restaurant without sobbing, I realized there are none for the time when you need the most guidance: bereavement.
Day 1 post-death
Consider today a palate cleanser. You will probably eat no food today. Resume crying.
Day 2
5:20 a.m.: Give up on sleep. Start coffee. Forget you started coffee. Go back to bed.
7:30: Return to the kitchen and contemplate making toast. Think: What’s the point? Make toast anyway, because intellectually you know you should eat. Note the physical difficulty of chewing and swallowing. Abandon toast.
7:45: Respond to bereavement-related calls, emails and texts for several hours.
Noon: A neighbor may arrive with pound cake.
3:45 p.m.: Following the memorial service meeting, head to a nearby diner with family. Order chicken soup, because chicken soup is right, and also the all-day big breakfast combo, because you can.
Eat one bite of pancake. Feel irrationally angry that there is not a pure maple syrup option. Feel irrationally angry at everything, especially the other customers and the waitress, who are acting normal and smiling. Don’t they know what happened?! Cry at the table.
Day 3
8:45 a.m.: Wake up to a knock on the door. Open the door and discover an Edible Arrangement.
Carry your Edible Arrangement to the kitchen counter. Wonder if the fruit has been washed, and how many people’s hands touched the fruit. Wonder how the Edible Arrangers do all those shapes, particularly the zigzag honeydew wedges and pineapple daisies with cantaloupe ball centers. Do not be surprised if this is the most sustained thinking you manage all week. Eat a chocolate-covered strawberry.
Midafternoon: A friend or church person will probably drop by to pop a casserole in your refrigerator, providing reheating directions that you will promptly forget.
5:35 p.m.: Remove the casserole from the fridge. How did she say to reheat this? Is 350 degrees right? Peek under the foil. Lasagna. Should the foil be on or off to reheat? Do I care?
Forty-five minutes later: Remove the lasagna from the oven and realize you have no appetite for ribbons of meaty pasta. Comfort food is not comforting yet, only hard to digest.
Slide the lasagna into the fridge for another day, next to the untouched groceries you bought while everything was still normal. Eat cereal or takeout pho instead.
Day 4
8 a.m.: Funeral day. There will probably be no breakfast, as your stomach is a spasmodic, twisted ball of nerves. While greeting guests before the service, suck on a mint.
Later: The reception. Food everywhere. Eat nothing due to nonstop condolence small talk.
After a while, escape to the powder room with a small plate of food. Break down crying while sitting on the toilet lid eating crackers schmeared with goat cheese, a bell pepper slice and a lukewarm crab cake. Consider hiding in the powder room forever.
Late afternoon: Close family and friends may gather at someone’s house for the after-party. A genius cousin will order pizza.
Someone will say something really funny. You will laugh. You may be tempted to feel guilty for laughing. Do not under any circumstances feel guilty. Feel grateful.
The pizza arrives. Take a slice. It will taste familiar and hot. It will taste … normal. It is not good for you, but somehow, in that very moment, it may be perfect.
The days afterward
There may be certain foods you never eat again: the braised creamy leeks with pancetta that only he could make, the dish made of memories so thick they hurt to swallow. There may be meals where your dining partner is an empty chair. You might burn the beef and broccoli you used to stir-fry with ease because you are stupid with grief and cannot focus.
There will be family holidays. You will eat the sweet-potato casserole with mini-marshmallows baked on top, overcooked Thanksgiving turkey crusted with thyme and sage, and warm caramel apple cobbler that you always ate but without the person who was supposed to be eating it with you. It will be hard. Do it anyway.
But before long, you will eat the entire piece of toast. Soon, you’ll stop burning the stir-fry. You’ll go to your favorite little Italian place and share bottles of wine with friends who envelop you with so much love and useless gossip that you feel nearly whole again, if only for an evening. Maybe not yet, but soon.
In the meantime, have a chocolate-covered strawberry.
Palliative Care Film Challenges Stereotypes About Opioids
by Donald G. McNeil, Jr.
NY Times, March 16, 2018
“Hippocratic,” a documentary about the life of Dr. M.R. Rajagopal, India’s leading advocate of palliative care, is now touring the United States — a country where attitudes toward pain relief have changed because of the overdose epidemic.
Dr. Rajagopal’s chief message — and that of the film — is that the essence of care for the dying is simple compassion. His inspiration came from Mahatma Gandhi, said Dr. Rajagopal, who in 2014 won a global award from Human Rights Watch for his activism.
But for a doctor, part of compassion is relieving pain when a patient’s tumors have become so large, burns so deep or wounds so grievous that they are beyond cure, Dr. Rajagopal said. And that usually can be done only with opioid-based pain relievers — like morphine and fentanyl.
People in agony may kill themselves, and the film recalls such cases.
But opioids have been demonized in recent years because so many young Americans — often prescribed narcotic pills for dental or back pain rather than for fatal illnesses — have become addicted and gone on to use heroin, street fentanyl or other concoctions, sometimes with fatal consequences.
America’s crisis “is an issue,” even in India, Dr. Rajagopal said in an interview before “Hippocratic” was screened in New York on Tuesday. “It stopped the boat.”
Indian poppy fields supply much of the world’s legally grown opium, and the two government plants where it is refined were allowed to fall into disrepair, and then were blamed for pollution and sometimes shut down temporarily, he said, which drove up the prices of normally cheap palliative care drugs.
But the opioid crisis in the United States has not affected every struggling country.
On indexes measuring how well countries deliver care to the dying, Mongolia does unusually well, despite its poverty. The credit for that goes to Dr. Odontuya Davaasuren, founder of the Mongolian Palliative Care Society, who learned about palliative care only 18 years ago, at a conference in Sweden.
Death from liver cancer, common in Mongolia, is often excruciatingly painful. In an email, Dr. Davaasuren said her country imported only small amounts of morphine and had no drug-abuse problem.
“Not so many Mongolians understand English, and information about the American overdose epidemic did not reach most of the population,” she wrote.
She was reluctant to discuss the issue further, she said, for fear that health officials would take notice, get worried and make her work harder.
The 88-minute documentary “Hippocratic” is in theaters in the United States and Canada until April 17.
Dr. Rajagopal’s chief message — and that of the film — is that the essence of care for the dying is simple compassion. His inspiration came from Mahatma Gandhi, said Dr. Rajagopal, who in 2014 won a global award from Human Rights Watch for his activism.
But for a doctor, part of compassion is relieving pain when a patient’s tumors have become so large, burns so deep or wounds so grievous that they are beyond cure, Dr. Rajagopal said. And that usually can be done only with opioid-based pain relievers — like morphine and fentanyl.
People in agony may kill themselves, and the film recalls such cases.
But opioids have been demonized in recent years because so many young Americans — often prescribed narcotic pills for dental or back pain rather than for fatal illnesses — have become addicted and gone on to use heroin, street fentanyl or other concoctions, sometimes with fatal consequences.
America’s crisis “is an issue,” even in India, Dr. Rajagopal said in an interview before “Hippocratic” was screened in New York on Tuesday. “It stopped the boat.”
Indian poppy fields supply much of the world’s legally grown opium, and the two government plants where it is refined were allowed to fall into disrepair, and then were blamed for pollution and sometimes shut down temporarily, he said, which drove up the prices of normally cheap palliative care drugs.
But the opioid crisis in the United States has not affected every struggling country.
On indexes measuring how well countries deliver care to the dying, Mongolia does unusually well, despite its poverty. The credit for that goes to Dr. Odontuya Davaasuren, founder of the Mongolian Palliative Care Society, who learned about palliative care only 18 years ago, at a conference in Sweden.
Death from liver cancer, common in Mongolia, is often excruciatingly painful. In an email, Dr. Davaasuren said her country imported only small amounts of morphine and had no drug-abuse problem.
“Not so many Mongolians understand English, and information about the American overdose epidemic did not reach most of the population,” she wrote.
She was reluctant to discuss the issue further, she said, for fear that health officials would take notice, get worried and make her work harder.
The 88-minute documentary “Hippocratic” is in theaters in the United States and Canada until April 17.
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A Doctor Argues That Her Profession Needs to Slow Down, Stat
by Sandeep Jauhar NY Times, January 26, 2017 Doctors today often complain of working in an occupational black hole in which patient encounters are compressed into smaller and smaller space and time. You can do a passable job in a 10-minute visit, they say, but it is impossible to appreciate the subtleties of patient care when you are rushing. Enter “Slow Medicine: The Way to Healing,” a wonderful new memoir by Dr. Victoria Sweet. The term “slow medicine” has different interpretations. For some it means spending more time with patients. For others it means taking the time to understand evidence so as to avoid overdiagnosis and overtreatment. For Sweet, it means “stepping back and seeing the patient in the context of his environment,” and providing medical care that is “slow, methodical and step-by-step.” READ MORE |
Understanding Grief
by Jane Brody
NY Times, January 15, 2017
Although many of us are able to speak frankly about death, we still have a lot to learn about dealing wisely with its aftermath: grief, the natural reaction to loss of a loved one.
Relatively few of us know what to say or do that can be truly helpful to a relative, friend or acquaintance who is grieving. In fact, relatively few who have suffered a painful loss know how to be most helpful to themselves.
Two new books by psychotherapists who have worked extensively in the field of loss and grief are replete with stories and guidance that can help both those in mourning and the people they encounter avoid many of the common pitfalls and misunderstandings associated with grief. Both books attempt to correct false assumptions about how and how long grief might be experienced.
One book, “It’s OK That You’re Not OK,” by Megan Devine of Portland, Ore., has the telling subtitle “Meeting Grief and Loss in a Culture That Doesn’t Understand.” It grew out of the tragic loss of her beloved partner, who drowned at age 39 while the couple was on vacation. The other book, especially illuminating in its coverage of how people cope with different kinds of losses, is “Grief Works: Stories of Life, Death and Surviving,” by Julia Samuel, who works with bereaved families both in private practice and at England’s National Health Service, at St. Mary’s hospital, Paddington.
The books share a most telling message: As Ms. Samuel put it, “There is no right or wrong in grief; we need to accept whatever form it takes, both in ourselves and in others.” Recognizing loss as a universal experience, Ms. Devine hopes that “if we can start to understand the true nature of grief, we can have a more helpful, loving, supportive culture.”
Both authors emphasize that grief is not a problem to be solved or resolved. Rather, it’s a process to be tended and lived through in whatever form and however long it may take.
“The process cannot be hurried by friends and family,” however well meaning their desire to relieve the griever’s anguish, Ms. Samuel wrote. “Recovery and adjustment can take much longer than most people realize. We need to accept whatever form it takes, both in ourselves and in others.”
We can all benefit from learning how to respond to grief in ways that don’t prolong, intensify or dismiss the pain. Likewise, those trying to help need to know that grief cannot be fit into a preordained time frame or form of expression. Too often people who experience a loss are disparaged because their mourning persists longer than others think reasonable or because they remain self-contained and seem not to mourn at all.
I imagine, for example, that some adults thought my stoical response to my mother’s premature death when I was 16 was “unnatural.” In truth, after tending to her for a year as she suffered through an unstoppable cancer, her death was a relief. It took a year for me to shed my armor and openly mourn the incalculable loss. But 60 years later, I still treasure her most important legacy: To live each day as if it could be my last but with an eye on the future in case it’s not.
Likewise, I was relieved when my husband’s suffering ended six weeks after diagnosis of an incurable cancer. Though I missed him terribly, I seemed to go on with my life as if little had changed. Few outside of the immediate family knew that I was honoring his dying wish that I continue to live fully for my own sake and that of our children and grandchildren.
Just as we all love others in our own unique ways, so do we mourn their loss in ways that cannot be fit into a single mold or even a dozen different molds. Last month, James G. Robinson, director of global analytics for The New York Times, described a 37-day, 6,150-mile therapeutic road trip he took with his family following the death of his 5-year-old son, collecting commemorative objects along the way and giving each member of the family a chance to express anger and sadness about the untimely loss.
Ms. Devine maintains that most grief support offered by professionals and others takes the wrong approach by encouraging mourners to move through the pain. While family and friends naturally want you to feel better, “pain that is not allowed to be spoken or expressed turns in on itself, and creates more problems,” she wrote. “Unacknowledged and unheard pain doesn’t go away. The way to survive grief is by allowing pain to exist, not in trying to cover it up or rush through it.”
As a bereaved mother told Ms. Samuel, “You never ‘get over it,’ you ‘get on with it,’ and you never ‘move on,’ but you ‘move forward.’”
Ms. Devine agrees that being “encouraged to ‘get over it’ is one of the biggest causes of suffering inside grief.” Rather than trying to “cure” pain, the goal should be to minimize suffering, which she said “comes when we feel dismissed or unsupported in our pain, with being told there is something wrong with what you feel.”
She explains that pain cannot be “fixed,” that companionship, not correction, is the best way to deal with grief. She encourages those who want to be helpful to “bear witness,” to offer friendship without probing questions or unsolicited advice, help if it is needed and wanted, and a listening ear no matter how often mourners wish to tell their story.
To those who grieve, she suggests finding a nondestructive way to express it. “If you can’t tell your story to another human, find another way: journal, paint, make your grief into a graphic novel with a very dark story line. Or go out to the woods and tell the trees. It is an immense relief to be able to tell your story without someone trying to fix it.”
She also suggests keeping a journal that records situations that either intensify or relieve suffering. “Are there times you feel more stable, more grounded, more able to breathe inside your loss? Does anything — a person, a place, an activity — add to your energy bank account? Conversely, are there activities or environments that absolutely make things worse?”
Whenever possible, to decrease suffering choose to engage in things that help and avoid those that don’t.
by Jane Brody
NY Times, January 15, 2017
Although many of us are able to speak frankly about death, we still have a lot to learn about dealing wisely with its aftermath: grief, the natural reaction to loss of a loved one.
Relatively few of us know what to say or do that can be truly helpful to a relative, friend or acquaintance who is grieving. In fact, relatively few who have suffered a painful loss know how to be most helpful to themselves.
Two new books by psychotherapists who have worked extensively in the field of loss and grief are replete with stories and guidance that can help both those in mourning and the people they encounter avoid many of the common pitfalls and misunderstandings associated with grief. Both books attempt to correct false assumptions about how and how long grief might be experienced.
One book, “It’s OK That You’re Not OK,” by Megan Devine of Portland, Ore., has the telling subtitle “Meeting Grief and Loss in a Culture That Doesn’t Understand.” It grew out of the tragic loss of her beloved partner, who drowned at age 39 while the couple was on vacation. The other book, especially illuminating in its coverage of how people cope with different kinds of losses, is “Grief Works: Stories of Life, Death and Surviving,” by Julia Samuel, who works with bereaved families both in private practice and at England’s National Health Service, at St. Mary’s hospital, Paddington.
The books share a most telling message: As Ms. Samuel put it, “There is no right or wrong in grief; we need to accept whatever form it takes, both in ourselves and in others.” Recognizing loss as a universal experience, Ms. Devine hopes that “if we can start to understand the true nature of grief, we can have a more helpful, loving, supportive culture.”
Both authors emphasize that grief is not a problem to be solved or resolved. Rather, it’s a process to be tended and lived through in whatever form and however long it may take.
“The process cannot be hurried by friends and family,” however well meaning their desire to relieve the griever’s anguish, Ms. Samuel wrote. “Recovery and adjustment can take much longer than most people realize. We need to accept whatever form it takes, both in ourselves and in others.”
We can all benefit from learning how to respond to grief in ways that don’t prolong, intensify or dismiss the pain. Likewise, those trying to help need to know that grief cannot be fit into a preordained time frame or form of expression. Too often people who experience a loss are disparaged because their mourning persists longer than others think reasonable or because they remain self-contained and seem not to mourn at all.
I imagine, for example, that some adults thought my stoical response to my mother’s premature death when I was 16 was “unnatural.” In truth, after tending to her for a year as she suffered through an unstoppable cancer, her death was a relief. It took a year for me to shed my armor and openly mourn the incalculable loss. But 60 years later, I still treasure her most important legacy: To live each day as if it could be my last but with an eye on the future in case it’s not.
Likewise, I was relieved when my husband’s suffering ended six weeks after diagnosis of an incurable cancer. Though I missed him terribly, I seemed to go on with my life as if little had changed. Few outside of the immediate family knew that I was honoring his dying wish that I continue to live fully for my own sake and that of our children and grandchildren.
Just as we all love others in our own unique ways, so do we mourn their loss in ways that cannot be fit into a single mold or even a dozen different molds. Last month, James G. Robinson, director of global analytics for The New York Times, described a 37-day, 6,150-mile therapeutic road trip he took with his family following the death of his 5-year-old son, collecting commemorative objects along the way and giving each member of the family a chance to express anger and sadness about the untimely loss.
Ms. Devine maintains that most grief support offered by professionals and others takes the wrong approach by encouraging mourners to move through the pain. While family and friends naturally want you to feel better, “pain that is not allowed to be spoken or expressed turns in on itself, and creates more problems,” she wrote. “Unacknowledged and unheard pain doesn’t go away. The way to survive grief is by allowing pain to exist, not in trying to cover it up or rush through it.”
As a bereaved mother told Ms. Samuel, “You never ‘get over it,’ you ‘get on with it,’ and you never ‘move on,’ but you ‘move forward.’”
Ms. Devine agrees that being “encouraged to ‘get over it’ is one of the biggest causes of suffering inside grief.” Rather than trying to “cure” pain, the goal should be to minimize suffering, which she said “comes when we feel dismissed or unsupported in our pain, with being told there is something wrong with what you feel.”
She explains that pain cannot be “fixed,” that companionship, not correction, is the best way to deal with grief. She encourages those who want to be helpful to “bear witness,” to offer friendship without probing questions or unsolicited advice, help if it is needed and wanted, and a listening ear no matter how often mourners wish to tell their story.
To those who grieve, she suggests finding a nondestructive way to express it. “If you can’t tell your story to another human, find another way: journal, paint, make your grief into a graphic novel with a very dark story line. Or go out to the woods and tell the trees. It is an immense relief to be able to tell your story without someone trying to fix it.”
She also suggests keeping a journal that records situations that either intensify or relieve suffering. “Are there times you feel more stable, more grounded, more able to breathe inside your loss? Does anything — a person, a place, an activity — add to your energy bank account? Conversely, are there activities or environments that absolutely make things worse?”
Whenever possible, to decrease suffering choose to engage in things that help and avoid those that don’t.
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One Day Your Mind May Fade. At Least You'll Have a Plan
by Paula Span NY Times, January 19, 2018 When Ann Vandervelde visited her primary care doctor in August, he had something new to show her. Dr. Barak Gaster, an internist at the University of Washington School of Medicine, had spent three years working with specialists in geriatrics, neurology, palliative care and psychiatry to come up with a five-page document that he calls a dementia-specific advance directive. |
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In simple language, it maps out the effects of mild, moderate and severe dementia, and asks patients to specify which medical interventions they would want — and not want — at each phase of the illness.
“Patients stumble into the advanced stage of dementia before anyone identifies it and talks to them about what’s happening,” Dr. Gaster told me. “At what point, if ever, would they not want medical interventions to keep them alive longer? A lot of people have strong opinions about this, but it’s hard to figure out how to let them express them as the disease progresses.”
One of those with strong opinions, it happens, was Ms. Vandervelde, 71, an abstract painter in Seattle. Her father had died of dementia years before, in a nursing home after her mother could no longer care for him at home. Ms. Vandervelde had also spent time with dementia patients as a hospice volunteer.
Further, caring for her mother in her final year, Ms. Vandervelde had seen how family conflicts could flare over medical decisions. “I was not going to leave that choice to my children if I could spare them that,” she said.
Like a growing number of Americans over age 60, she already had a standard advance directive, designating a decision-maker (her husband) to direct her medical care if she became incapacitated.
Not all experts are convinced another directive is needed. But as Dr. Gaster and his co-authors recently argued in the journal JAMA, the usual forms don’t provide much help with dementia.
“The standard advance directives tend to focus on things like a ‘permanent coma’ or a ‘persistent vegetative state,’” Dr. Gaster said. “Most of the time, they apply to a person with less than six months to live.”
Although it’s a terminal disease, dementia often intensifies slowly, over many years. The point at which dementia patients can no longer direct their own care isn’t predictable or obvious.
Moreover, patients’ goals and preferences might well change over time. In the early stage, life may remain enjoyable and rewarding despite memory problems or difficulties with daily tasks.
“They have potentially many years in which they wouldn’t want a directive that says ‘do not resuscitate,’” Dr. Gaster said. But if severe dementia leaves them bedridden, unresponsive and dependent, they might feel differently — yet no longer be able to say so.
Whereas a persistent vegetative state occurs rarely, Dr. Gaster tells his patients, dementia strikes far more commonly.
How commonly? That’s not a simple question to answer.
Researchers often cite the long-term Framingham study, which in 1997 estimated the lifetime risk at age 65 as 10.9 percent for men and 12 percent for women.
But the participants in that study were overwhelmingly white. Among the populations facing higher dementia rates are African-Americans, Dr. Murali Doraiswamy, a neuroscientist at Duke University, pointed out.
Ms. Vandervelde is an abstract painter who saw firsthand how family conflicts could flare over medical decisions when her parents died. She wanted to spare her children that grief. Last year, the journal Demography published a more representative model, estimating that for the cohort born in 1940, the lifetime risk at age 70 was 30.8 percent for men and 37.4 percent for women.
Dr. Gaster tells patients that “somewhere between 20 and 30 percent of us will at some point develop dementia.” Over the past year, as patients turn 65 and qualify for Medicare — which covers a visit to discuss advance care planning — he has offered them his dementia-specific directive, intended to supplement their other directives.
For each stage of dementia, the patient can choose among four options. “Full efforts to prolong my life” and “comfort-oriented care only, focused on relieving suffering” represent two ends of the spectrum.
Patients can also opt for lifesaving treatments — except when their hearts stop or they can’t breathe on their own, precluding resuscitation or ventilators.
Or they can opt to receive care where they live but avoid hospitalization. “For someone who doesn’t understand what’s happening, going to an E.R. or being hospitalized can be really traumatic,” Dr. Gaster said. The experience can lead to delirium and other setbacks.
So far, 50 to 60 patients have filled out the form. A few have declined his offer to discuss dementia; others “nod and thank me and take it home and never mail it back.”
But most appreciate the overture, Dr. Gaster said, especially if family members have experienced dementia. “It’s something they think and worry about, and they welcome the idea because they do have clear wishes.” In that case, he adds the completed form to their medical records.
We could debate whether a separate dementia form, on top of the general advance directive everyone should have, makes sense. Already, nurses and doctors lament that paperwork often winds up forgotten in a drawer, a safe deposit box or a lawyer’s office, unavailable in a crisis.
If patients haven’t updated the directive in years, their designated proxies may have moved or died. Proxies may never have learned their loved ones’ preferences in the first place. Will adding another directive clarify this process?
Other leaders in the campaign to persuade Americans to document their end-of-life wishes had questions, too.
Ellen Goodman, founder of The Conversation Project (whose dementia-related kit similarly presents choices at different stages), pointed out that the new form represents a patient-doctor agreement.
“We need to have families involved,” she said. “No checklist on earth is going to cover everything you encounter. Most important is the conversation with the decision-maker. That person has to understand what you value and what’s important to you.”
Dr. Rebecca Sudore, a geriatrician and palliative care specialist at the University of California, San Francisco, agreed. Her effort — Prepare for Your Care, an online guide — encourages users to incorporate their reasons for various decisions. “At the bedside, the ‘why’ is very important,” she said.
Both The Conversation Project and Prepare for Your Care provide links to the advance directive/durable power-of-attorney forms legal in each state.
What’s not in dispute: It’s crucial to talk to family, friends and doctors about the quality of life we find acceptable and unacceptable, which interventions we agree to or don’t — and then to document those decisions and circulate the document to designated decision-makers and everyone else who might be involved.
And yes, we should incorporate decisions about dementia into that process, whether in a separate form or not.
When Ann Vandervelde completed her dementia-specific directive, “I felt great relief,” she said. It gave her a sense of control, “and that’s really important to me, to be in the driver’s seat all the way to the end.”
“Patients stumble into the advanced stage of dementia before anyone identifies it and talks to them about what’s happening,” Dr. Gaster told me. “At what point, if ever, would they not want medical interventions to keep them alive longer? A lot of people have strong opinions about this, but it’s hard to figure out how to let them express them as the disease progresses.”
One of those with strong opinions, it happens, was Ms. Vandervelde, 71, an abstract painter in Seattle. Her father had died of dementia years before, in a nursing home after her mother could no longer care for him at home. Ms. Vandervelde had also spent time with dementia patients as a hospice volunteer.
Further, caring for her mother in her final year, Ms. Vandervelde had seen how family conflicts could flare over medical decisions. “I was not going to leave that choice to my children if I could spare them that,” she said.
Like a growing number of Americans over age 60, she already had a standard advance directive, designating a decision-maker (her husband) to direct her medical care if she became incapacitated.
Not all experts are convinced another directive is needed. But as Dr. Gaster and his co-authors recently argued in the journal JAMA, the usual forms don’t provide much help with dementia.
“The standard advance directives tend to focus on things like a ‘permanent coma’ or a ‘persistent vegetative state,’” Dr. Gaster said. “Most of the time, they apply to a person with less than six months to live.”
Although it’s a terminal disease, dementia often intensifies slowly, over many years. The point at which dementia patients can no longer direct their own care isn’t predictable or obvious.
Moreover, patients’ goals and preferences might well change over time. In the early stage, life may remain enjoyable and rewarding despite memory problems or difficulties with daily tasks.
“They have potentially many years in which they wouldn’t want a directive that says ‘do not resuscitate,’” Dr. Gaster said. But if severe dementia leaves them bedridden, unresponsive and dependent, they might feel differently — yet no longer be able to say so.
Whereas a persistent vegetative state occurs rarely, Dr. Gaster tells his patients, dementia strikes far more commonly.
How commonly? That’s not a simple question to answer.
Researchers often cite the long-term Framingham study, which in 1997 estimated the lifetime risk at age 65 as 10.9 percent for men and 12 percent for women.
But the participants in that study were overwhelmingly white. Among the populations facing higher dementia rates are African-Americans, Dr. Murali Doraiswamy, a neuroscientist at Duke University, pointed out.
Ms. Vandervelde is an abstract painter who saw firsthand how family conflicts could flare over medical decisions when her parents died. She wanted to spare her children that grief. Last year, the journal Demography published a more representative model, estimating that for the cohort born in 1940, the lifetime risk at age 70 was 30.8 percent for men and 37.4 percent for women.
Dr. Gaster tells patients that “somewhere between 20 and 30 percent of us will at some point develop dementia.” Over the past year, as patients turn 65 and qualify for Medicare — which covers a visit to discuss advance care planning — he has offered them his dementia-specific directive, intended to supplement their other directives.
For each stage of dementia, the patient can choose among four options. “Full efforts to prolong my life” and “comfort-oriented care only, focused on relieving suffering” represent two ends of the spectrum.
Patients can also opt for lifesaving treatments — except when their hearts stop or they can’t breathe on their own, precluding resuscitation or ventilators.
Or they can opt to receive care where they live but avoid hospitalization. “For someone who doesn’t understand what’s happening, going to an E.R. or being hospitalized can be really traumatic,” Dr. Gaster said. The experience can lead to delirium and other setbacks.
So far, 50 to 60 patients have filled out the form. A few have declined his offer to discuss dementia; others “nod and thank me and take it home and never mail it back.”
But most appreciate the overture, Dr. Gaster said, especially if family members have experienced dementia. “It’s something they think and worry about, and they welcome the idea because they do have clear wishes.” In that case, he adds the completed form to their medical records.
We could debate whether a separate dementia form, on top of the general advance directive everyone should have, makes sense. Already, nurses and doctors lament that paperwork often winds up forgotten in a drawer, a safe deposit box or a lawyer’s office, unavailable in a crisis.
If patients haven’t updated the directive in years, their designated proxies may have moved or died. Proxies may never have learned their loved ones’ preferences in the first place. Will adding another directive clarify this process?
Other leaders in the campaign to persuade Americans to document their end-of-life wishes had questions, too.
Ellen Goodman, founder of The Conversation Project (whose dementia-related kit similarly presents choices at different stages), pointed out that the new form represents a patient-doctor agreement.
“We need to have families involved,” she said. “No checklist on earth is going to cover everything you encounter. Most important is the conversation with the decision-maker. That person has to understand what you value and what’s important to you.”
Dr. Rebecca Sudore, a geriatrician and palliative care specialist at the University of California, San Francisco, agreed. Her effort — Prepare for Your Care, an online guide — encourages users to incorporate their reasons for various decisions. “At the bedside, the ‘why’ is very important,” she said.
Both The Conversation Project and Prepare for Your Care provide links to the advance directive/durable power-of-attorney forms legal in each state.
What’s not in dispute: It’s crucial to talk to family, friends and doctors about the quality of life we find acceptable and unacceptable, which interventions we agree to or don’t — and then to document those decisions and circulate the document to designated decision-makers and everyone else who might be involved.
And yes, we should incorporate decisions about dementia into that process, whether in a separate form or not.
When Ann Vandervelde completed her dementia-specific directive, “I felt great relief,” she said. It gave her a sense of control, “and that’s really important to me, to be in the driver’s seat all the way to the end.”
My Deathbed Playlist(and Yours)
By MARK VANHOENACKER
NY Times, November 5, 2016
The music that gave outlives meaning can bring comfort at the end. READ THE ARTICLE
On Assisted Suicide,
Going Beyond ‘Do No Harm’
By HAIDER JAVED WARRAICH
NY Times, November 4, 2016
DURHAM, N.C. — Out of nowhere, a patient I recently met in my clinic told me, “If my heart stops, doctor, just let me go.”
“Why?” I asked him.
Without hesitating, he replied, “Because there are worse states than death.”
Advances in medical therapies, in addition to their immense benefits, have changed death to dying — from an instantaneous event to a long, drawn-out process. Death is preceded by years of disability, countless procedures and powerful medications. Only one in five patients is able to die at home. These days many patients fear what it takes to live more than death itself.
That may explain why this year, behind the noise of the presidential campaign, the right-to-die movement has made several big legislative advances. In June, California became the fifth and largest state to put an assisted suicide law into effect; this week the District of Columbia Council passed a similar law. And on Tuesday voters in Colorado will decide whether to allow physician-assisted suicide in their state as well.
Yet even as assisted suicide has generated broader support, the group most vehemently opposed to it hasn’t budged: doctors.
That resistance is traditionally couched in doctors’ adherence to our understanding of the Hippocratic oath. But it’s becoming harder for us to know what is meant by “do no harm.” With the amount of respirators and other apparatus at our disposal, it is almost impossible for most patients to die unless doctors’ or patients’ families end life support. The withdrawal of treatment, therefore, is now perhaps the most common way critically ill patients die in the hospital.
While “withdrawal” implies a passive act, terminating artificial support feels decidedly active. Unlike assisted suicide, which requires patients to be screened for depression, patients can ask for treatment withdrawal even if they have major depression or are suicidal. Furthermore, withdrawal decisions are usually made for patients who are so sick that they frequently have no voice in the matter.
Some doctors skirt the question of assisted suicide through opiate prescriptions, which are almost universally prescribed for patients nearing death. Even though these medications can slow down breathing to the point of stoppage, doctors and nurses are very comfortable giving them, knowing that they might hasten a “natural” death.
In extreme cases, when even morphine isn’t enough, patients are given anesthesia to ease their deaths. The last time I administered what is called terminal sedation, another accepted strategy, was in the case of a patient with abdominal cancer whose intestines were perforated and for whom surgery was not an option. The patient, who had been writhing uncontrollably in pain, was finally comfortable. Yet terminal sedation, necessary as it was, felt closer to active euthanasia than assisted suicide would have.
While the way people die has changed, the arguments made against assisted suicide have not. We are warned of a slippery slope, implying that legalization of assisted suicide would eventually lead to eugenic sterilization reminiscent of Nazi Germany. But no such drift has been observed in any of the countries where it has been legalized.
We are cautioned that legalization would put vulnerable populations like the uninsured and the disabled at risk; however, years of data from Oregon demonstrate that the vast majority of patients who opt for it are white, affluent and highly educated.
We are also told that assisted suicide laws will allow doctors and nurses to avoid providing high-quality palliative care to patients, but the data suggests the opposite: A strong argument for legalization is that it sensitizes doctors about ensuring the comfort of patients with terminal illnesses; if suicide is an option, they’ll do what they can to preclude it.
And, again, we are counseled that physicians should do no harm. But medical harm is already one of the leading causes of death — and in any case, isn’t preventing patients from dying on their terms its own form of medical harm?
With the right safeguards in place, assisted suicide can help give terminally ill patients a semblance of control over their lives as disease, disability and the medical machine tries to wrest it away from them. In Oregon, of the exceedingly few patients who have requested a lethal prescription — 1,545 in 18 years — about 35 percent never uses it; for them, it is merely a means to self-affirmation, a reassuring option.
Instead of using our energies to obfuscate and obstruct how patients might want to end their lives when faced with life-limiting disease, we physicians need to reassess how we can help patients achieve their goals when the end is near. We need to be able to offer an option for those who desire assisted suicide, so that they can openly take control of their death.
Instead of seeking guidance from ancient edicts, we need to re-evaluate just what patients face in modern times. Even if it is a course we personally wouldn’t recommend, we should consider allowing it for patients suffering from debilitating disease. How we die has changed tremendously over the past few decades — and so must we.
“Why?” I asked him.
Without hesitating, he replied, “Because there are worse states than death.”
Advances in medical therapies, in addition to their immense benefits, have changed death to dying — from an instantaneous event to a long, drawn-out process. Death is preceded by years of disability, countless procedures and powerful medications. Only one in five patients is able to die at home. These days many patients fear what it takes to live more than death itself.
That may explain why this year, behind the noise of the presidential campaign, the right-to-die movement has made several big legislative advances. In June, California became the fifth and largest state to put an assisted suicide law into effect; this week the District of Columbia Council passed a similar law. And on Tuesday voters in Colorado will decide whether to allow physician-assisted suicide in their state as well.
Yet even as assisted suicide has generated broader support, the group most vehemently opposed to it hasn’t budged: doctors.
That resistance is traditionally couched in doctors’ adherence to our understanding of the Hippocratic oath. But it’s becoming harder for us to know what is meant by “do no harm.” With the amount of respirators and other apparatus at our disposal, it is almost impossible for most patients to die unless doctors’ or patients’ families end life support. The withdrawal of treatment, therefore, is now perhaps the most common way critically ill patients die in the hospital.
While “withdrawal” implies a passive act, terminating artificial support feels decidedly active. Unlike assisted suicide, which requires patients to be screened for depression, patients can ask for treatment withdrawal even if they have major depression or are suicidal. Furthermore, withdrawal decisions are usually made for patients who are so sick that they frequently have no voice in the matter.
Some doctors skirt the question of assisted suicide through opiate prescriptions, which are almost universally prescribed for patients nearing death. Even though these medications can slow down breathing to the point of stoppage, doctors and nurses are very comfortable giving them, knowing that they might hasten a “natural” death.
In extreme cases, when even morphine isn’t enough, patients are given anesthesia to ease their deaths. The last time I administered what is called terminal sedation, another accepted strategy, was in the case of a patient with abdominal cancer whose intestines were perforated and for whom surgery was not an option. The patient, who had been writhing uncontrollably in pain, was finally comfortable. Yet terminal sedation, necessary as it was, felt closer to active euthanasia than assisted suicide would have.
While the way people die has changed, the arguments made against assisted suicide have not. We are warned of a slippery slope, implying that legalization of assisted suicide would eventually lead to eugenic sterilization reminiscent of Nazi Germany. But no such drift has been observed in any of the countries where it has been legalized.
We are cautioned that legalization would put vulnerable populations like the uninsured and the disabled at risk; however, years of data from Oregon demonstrate that the vast majority of patients who opt for it are white, affluent and highly educated.
We are also told that assisted suicide laws will allow doctors and nurses to avoid providing high-quality palliative care to patients, but the data suggests the opposite: A strong argument for legalization is that it sensitizes doctors about ensuring the comfort of patients with terminal illnesses; if suicide is an option, they’ll do what they can to preclude it.
And, again, we are counseled that physicians should do no harm. But medical harm is already one of the leading causes of death — and in any case, isn’t preventing patients from dying on their terms its own form of medical harm?
With the right safeguards in place, assisted suicide can help give terminally ill patients a semblance of control over their lives as disease, disability and the medical machine tries to wrest it away from them. In Oregon, of the exceedingly few patients who have requested a lethal prescription — 1,545 in 18 years — about 35 percent never uses it; for them, it is merely a means to self-affirmation, a reassuring option.
Instead of using our energies to obfuscate and obstruct how patients might want to end their lives when faced with life-limiting disease, we physicians need to reassess how we can help patients achieve their goals when the end is near. We need to be able to offer an option for those who desire assisted suicide, so that they can openly take control of their death.
Instead of seeking guidance from ancient edicts, we need to re-evaluate just what patients face in modern times. Even if it is a course we personally wouldn’t recommend, we should consider allowing it for patients suffering from debilitating disease. How we die has changed tremendously over the past few decades — and so must we.
Love and Burnout: Caregivers, Too, Need Care
By CONSTANCE GUSTKE
NY Times SEPT. 2, 2016
AFTER Mark Donham’s wife, Chris, fell under the spell of early-onset Alzheimer’s, he doubled down on his marriage vows. He quit his job as a well-paid sales representative in the printing industry and became his wife’s 24-hour caregiver: dressing her, doing laundry and scheduling social visits with friends. Faith, hope and courage became his new mantra.
As Alzheimer’s slowly progressed and Chris became frailer, their lives narrowed. To explain their painful emotional journey to friends and family, Mr. Donham, who lives in Portland, Ore., began making videos and posting them on YouTube.
When his wife didn’t recognize him anymore, he said he felt as if his heart was ripping apart.
But Mr. Donham, still in his 40s, was being ripped apart in other ways, too. One day, he landed in the emergency room because he thought he was having a heart attack.
“It turned out be stress and strain,” said Mr. Donham, who also joined an Alzheimer’s support group for men. “When you’re in the middle of caregiving, you don’t know what caring for yourself means.”
Looking back, Mr. Donham, now 54, says that caregiving, painful as it was, made him a “richer, deeper person.”
But five years after his wife’s death, it also has proved costly emotionally and financially. When he finally returned to the work force, Mr. Donham took a pay cut and began commuting to Los Angeles. Despite having long-term care insurance, Mr. Donham spent about one-third of his carefully built retirement savings while caring for his wife.
Though caregiving can be a profound and moving journey, caregivers’ needs are often overlooked. The health care system is mainly focused on patients; caregivers who are slowly burning out can slip by unnoticed until it is too late.
“We’re seeing that caregiving burnout is more prevalent,” said Anne Tinyo, national manager of life management services at Wells Fargo Private Bank. “And it’s happening over a longer period of time.” Caregivers, she added, may even die before their loved ones.
Researchers have found that the human immune system can be weakened by stress and strain for up to three years after caregiving ends. As a result, caregivers can be more prone to having serious illnesses. Yet they rarely complain.
“Caregivers think that it’s shameful or wrong to ask for help,” said Mindi Golden, associate professor in communication studies at San Francisco State University. “But I’ve seen many people with physical injuries, such as rotator cuffs that were damaged while helping someone.”
The strains on caregivers have become more widely recognized lately and new efforts to help them are emerging. The National Alliance for Caregivinglists various resources on its website, including research on the impact of caregiving. Sites like Caring.com and the Family Caregiver Alliance offer online support groups.
The Alzheimer’s Association also offers many services, including online communities, nationwide support groups and a 24-hour helpline.
Adult day care centers can offer some respite for caregivers. The Insight Memory Care Center in Virginia, which offers day care for people with Alzheimer’s, began offering caregiver cruises last year. They let caregivers enjoy a vacation to the Caribbean without leaving their loved ones behind.
Men, who generally have smaller networks of friends than women, are at even greater risk. “They are less likely to maintain relationships and seek help,” said Zaldy Tan, medical director of the UCLA Alzheimer’s and Dementia Care Program. “They’re less prepared for the caregiving role. So they have a higher burden and burnout rate.”
The strains on caregivers have become more widely recognized lately and new efforts to help them are emerging.
After hearing many people’s caregiving stories, Patti Davis, daughter of President Ronald Reagan, started a twice-a-week support group called Beyond Alzheimer’s five years ago. Everyone who enters the group, now based in Santa Monica, Calif., has some level of burnout, Ms. Davis said.
“People take on too much,” she said. “And so the stress becomes normal to them. The immune system is steadily eroded.” Many caregivers feel more comfortable talking about the Alzheimer’s disease rather than about themselves. “But they’re patients, too,” she said.
The symptoms of burnout can be hard for outsiders and the caregivers themselves to recognize. They include weight gain or loss, choppy sleep patterns, daily habits that get whittled away — and clinical depression.
Mr. Donham ended up recharging his system by taking a two-year trip to 26 countries on his BMW motorcycle.
“Take care of yourself,” he counseled. “Have a plan. Get involved in support groups. And know what help you’ll need, like mowing the lawn.”
Perhaps the best antidote to burnout, many experts say, is building a team, rather than handling everything yourself.
Mauny Kaseburg used the teamwork approach when caring for her dying parents. They didn’t want to leave their longstanding, custom-made home in the state of Washington. So Ms. Kaseburg assembled a family team that included her sister, niece and daughter, who took turns caring for her parents. She became the team captain.
“It takes a village to help people die with dignity,” said Ms. Kaseburg, who lives on Mercer Island, east of Seattle, with her husband. “And if you’re lucky, it’s the village of family.”
She knew from the beginning that she didn’t want to become a “sacrificial lamb.”
The best family teamwork involves meeting, talking and sharing responsibility, Ms. Tinyo said. One team member, for example, can handle medical appointments, another might be good at preparing meals. “Have weekly phone calls if you’re in crisis,” she said.
Kristin Baird also used the teamwork approach when caring for her mother, who had cancer and needed round-the-clock professional care. Ms. Baird visited nearly every day to help out. Her husband took on household chores. Two daughters who lived nearby pitched in.
Even so, she struggled constantly to balance all the caregiving responsibilities.
Ms. Baird, who is president of the consulting firm Baird Group, scrambled to keep her 18-employee business cranking. She logged onto GoToMeeting events from medical waiting rooms and took business calls from parking lots.
Nonetheless, business revenue eventually slumped, as it became harder to recruit new clients. She now figures that she will need to spend the next three years rebuilding the business. She also spent a good portion of her savings and retirement funds while caring for her mother.
“It was a rude awakening,” said Ms. Baird, who lives in Fort Atkinson, Wis., and is thankful she was there when her mother died about a year ago. “I’m just now starting to recover.”
Thomas C. West, a partner in the investment advisory firm SEIA, said caregivers can become so overwhelmed that they neglect basic financial responsibilities, like filing their taxes, contributing money to retirement accounts and the like.
He argues that society needs to come up with a way for caregivers to be paid for their work. “You can measure the impact of caregiving on not working professionally,” he said.
Mr. Donham has not remarried since his wife died. He has taken on a role as an advocate for the Alzheimer’s Association, pushing for increased funding for research and greater attention to the needs of Alzheimer families. “It takes people standing up,” he said.
As Alzheimer’s slowly progressed and Chris became frailer, their lives narrowed. To explain their painful emotional journey to friends and family, Mr. Donham, who lives in Portland, Ore., began making videos and posting them on YouTube.
When his wife didn’t recognize him anymore, he said he felt as if his heart was ripping apart.
But Mr. Donham, still in his 40s, was being ripped apart in other ways, too. One day, he landed in the emergency room because he thought he was having a heart attack.
“It turned out be stress and strain,” said Mr. Donham, who also joined an Alzheimer’s support group for men. “When you’re in the middle of caregiving, you don’t know what caring for yourself means.”
Looking back, Mr. Donham, now 54, says that caregiving, painful as it was, made him a “richer, deeper person.”
But five years after his wife’s death, it also has proved costly emotionally and financially. When he finally returned to the work force, Mr. Donham took a pay cut and began commuting to Los Angeles. Despite having long-term care insurance, Mr. Donham spent about one-third of his carefully built retirement savings while caring for his wife.
Though caregiving can be a profound and moving journey, caregivers’ needs are often overlooked. The health care system is mainly focused on patients; caregivers who are slowly burning out can slip by unnoticed until it is too late.
“We’re seeing that caregiving burnout is more prevalent,” said Anne Tinyo, national manager of life management services at Wells Fargo Private Bank. “And it’s happening over a longer period of time.” Caregivers, she added, may even die before their loved ones.
Researchers have found that the human immune system can be weakened by stress and strain for up to three years after caregiving ends. As a result, caregivers can be more prone to having serious illnesses. Yet they rarely complain.
“Caregivers think that it’s shameful or wrong to ask for help,” said Mindi Golden, associate professor in communication studies at San Francisco State University. “But I’ve seen many people with physical injuries, such as rotator cuffs that were damaged while helping someone.”
The strains on caregivers have become more widely recognized lately and new efforts to help them are emerging. The National Alliance for Caregivinglists various resources on its website, including research on the impact of caregiving. Sites like Caring.com and the Family Caregiver Alliance offer online support groups.
The Alzheimer’s Association also offers many services, including online communities, nationwide support groups and a 24-hour helpline.
Adult day care centers can offer some respite for caregivers. The Insight Memory Care Center in Virginia, which offers day care for people with Alzheimer’s, began offering caregiver cruises last year. They let caregivers enjoy a vacation to the Caribbean without leaving their loved ones behind.
Men, who generally have smaller networks of friends than women, are at even greater risk. “They are less likely to maintain relationships and seek help,” said Zaldy Tan, medical director of the UCLA Alzheimer’s and Dementia Care Program. “They’re less prepared for the caregiving role. So they have a higher burden and burnout rate.”
The strains on caregivers have become more widely recognized lately and new efforts to help them are emerging.
After hearing many people’s caregiving stories, Patti Davis, daughter of President Ronald Reagan, started a twice-a-week support group called Beyond Alzheimer’s five years ago. Everyone who enters the group, now based in Santa Monica, Calif., has some level of burnout, Ms. Davis said.
“People take on too much,” she said. “And so the stress becomes normal to them. The immune system is steadily eroded.” Many caregivers feel more comfortable talking about the Alzheimer’s disease rather than about themselves. “But they’re patients, too,” she said.
The symptoms of burnout can be hard for outsiders and the caregivers themselves to recognize. They include weight gain or loss, choppy sleep patterns, daily habits that get whittled away — and clinical depression.
Mr. Donham ended up recharging his system by taking a two-year trip to 26 countries on his BMW motorcycle.
“Take care of yourself,” he counseled. “Have a plan. Get involved in support groups. And know what help you’ll need, like mowing the lawn.”
Perhaps the best antidote to burnout, many experts say, is building a team, rather than handling everything yourself.
Mauny Kaseburg used the teamwork approach when caring for her dying parents. They didn’t want to leave their longstanding, custom-made home in the state of Washington. So Ms. Kaseburg assembled a family team that included her sister, niece and daughter, who took turns caring for her parents. She became the team captain.
“It takes a village to help people die with dignity,” said Ms. Kaseburg, who lives on Mercer Island, east of Seattle, with her husband. “And if you’re lucky, it’s the village of family.”
She knew from the beginning that she didn’t want to become a “sacrificial lamb.”
The best family teamwork involves meeting, talking and sharing responsibility, Ms. Tinyo said. One team member, for example, can handle medical appointments, another might be good at preparing meals. “Have weekly phone calls if you’re in crisis,” she said.
Kristin Baird also used the teamwork approach when caring for her mother, who had cancer and needed round-the-clock professional care. Ms. Baird visited nearly every day to help out. Her husband took on household chores. Two daughters who lived nearby pitched in.
Even so, she struggled constantly to balance all the caregiving responsibilities.
Ms. Baird, who is president of the consulting firm Baird Group, scrambled to keep her 18-employee business cranking. She logged onto GoToMeeting events from medical waiting rooms and took business calls from parking lots.
Nonetheless, business revenue eventually slumped, as it became harder to recruit new clients. She now figures that she will need to spend the next three years rebuilding the business. She also spent a good portion of her savings and retirement funds while caring for her mother.
“It was a rude awakening,” said Ms. Baird, who lives in Fort Atkinson, Wis., and is thankful she was there when her mother died about a year ago. “I’m just now starting to recover.”
Thomas C. West, a partner in the investment advisory firm SEIA, said caregivers can become so overwhelmed that they neglect basic financial responsibilities, like filing their taxes, contributing money to retirement accounts and the like.
He argues that society needs to come up with a way for caregivers to be paid for their work. “You can measure the impact of caregiving on not working professionally,” he said.
Mr. Donham has not remarried since his wife died. He has taken on a role as an advocate for the Alzheimer’s Association, pushing for increased funding for research and greater attention to the needs of Alzheimer families. “It takes people standing up,” he said.
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Coloring Your Way Through Grief
by Jane Brody NY Times, May 16, 2016 |
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Deborah S. Derman, a professional grief counselor in suburban Philadelphia, has clearly suffered more than her fair share. “The field of grief counseling sort of found me,” she said, “because I had such a long history of loss.”
“Healing is a lifelong process, and elements of grief can occur at any time,” she said. “I’ve been widowed now for 24 years, but when my son got into medical school, I cried because my husband and parents weren’t there to see it. My daughter is about to graduate from college, and we will both cry because she never even knew her father. Her grief is different, but it’s not absent.” Now Dr. Derman has produced an intriguing new tool – an adult coloring book intended to help others “get through tough times.” Called “Colors of Loss and Healing,” the book consists of 35 pages of lavish illustrations to color, each relating to a word or phrase, like “one day at a time,” “bitter and sweet” and “resilience,” meant to evoke thoughts and feelings that can help to promote healing. Read more |
Lisa Powell Braun
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Lessons on End-of-Life Care From a SISter's Death
by Paula Span
NY Times, May 22, 2015
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The health care professionals entering my sister’s hospital room, or answering my questions in the corridor, had perfected a polite method of ascertaining whether I was entitled to information about her condition.
Nobody demanded, “Who the heck are you, and will I get canned for a Hipaa violation if I talk to you?” Nurses and physicians who hadn’t met me just asked, “Are you family?” “I’m her sister and her health care proxy,” I would say. That was sufficient; we went on to discuss test results or her morphine dose. READ MORE |
What it Means to "Hold Space" for People, Plus Eight Tips on How to Do It Well
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Dadu Shin
It's Not Just About "Quality of Life"
By Sandeep Jauhar
NY Times, May 2, 2015
My patient had been having chest pains for several days before his heart stopped. Paramedics managed to revive him, but not before his lungs, kidneys and brain were severely damaged by the lack of blood flow. The prognosis was grim. A neurologist in the intensive care unit said the best possible outcome would be life in a persistent vegetative state.
Most doctors would recommend purely palliative treatment at this point, and that is what we did. There was no chance of organ recovery, little chance the patient could ever be weaned from the ventilator. However, his family members said they were willing for him to be in this state as long as he was alive. They asked us to start dialysis for his failing kidneys.
Of all the situations a doctor can encounter in a hospital, perhaps none is as nerve-racking as a so-called futility case. It has been estimated that there are at least 12,000 such cases in the United States every year, each typically costing hundreds of thousands of dollars. A vast majority are settled through discussions between doctors and patients’ families or mediation by a medical ethics team. But a large number cannot be resolved.
READ MORE
By Sandeep Jauhar
NY Times, May 2, 2015
My patient had been having chest pains for several days before his heart stopped. Paramedics managed to revive him, but not before his lungs, kidneys and brain were severely damaged by the lack of blood flow. The prognosis was grim. A neurologist in the intensive care unit said the best possible outcome would be life in a persistent vegetative state.
Most doctors would recommend purely palliative treatment at this point, and that is what we did. There was no chance of organ recovery, little chance the patient could ever be weaned from the ventilator. However, his family members said they were willing for him to be in this state as long as he was alive. They asked us to start dialysis for his failing kidneys.
Of all the situations a doctor can encounter in a hospital, perhaps none is as nerve-racking as a so-called futility case. It has been estimated that there are at least 12,000 such cases in the United States every year, each typically costing hundreds of thousands of dollars. A vast majority are settled through discussions between doctors and patients’ families or mediation by a medical ethics team. But a large number cannot be resolved.
READ MORE
Overruling My Father
By Barron H. Lerner
April 8, 2015 NY Times
When it came to offering medical interventions to severely ill patients with no hope of recovery, my father had a fiercely strong opinion: They were inappropriate. For decades as an infectious diseases specialist, he had been asked to treat infections in dying patients. Whenever possible, he said no.
But when I approached my dad, who had developed end-stage Parkinson’s disease, to ask what his end-of-life wishes were, he indicated a desire for aggressive measures.
Bioethicists have long debated the issue of “precommitment.” Which wishes are more valid — ones that someone indicates in advance or those expressed during serious illness? My father’s case provided a vivid case study of this issue. READ MORE
By Barron H. Lerner
April 8, 2015 NY Times
When it came to offering medical interventions to severely ill patients with no hope of recovery, my father had a fiercely strong opinion: They were inappropriate. For decades as an infectious diseases specialist, he had been asked to treat infections in dying patients. Whenever possible, he said no.
But when I approached my dad, who had developed end-stage Parkinson’s disease, to ask what his end-of-life wishes were, he indicated a desire for aggressive measures.
Bioethicists have long debated the issue of “precommitment.” Which wishes are more valid — ones that someone indicates in advance or those expressed during serious illness? My father’s case provided a vivid case study of this issue. READ MORE
The Trouble with Advanced Directives
by Paula Span
March 13, 2015 NY Times
The man had written an advance directive four years ago, before his advancing dementia had made communication difficult. He had been very specific.
In case of a life-threatening condition, “he wanted comfort care only, no heroics,” said Dr. Rebecca Aslakson, a critical care anesthesiologist at Johns Hopkins Hospital in Baltimore.
But last month an uncontrollable nosebleed caused the 79-year-old to begin vomiting blood. The nursing home that cared for him sent him to a hospital, where doctors put him on a ventilator. They slowed the bleeding, but couldn’t stop it.
READ MORE
by Paula Span
March 13, 2015 NY Times
The man had written an advance directive four years ago, before his advancing dementia had made communication difficult. He had been very specific.
In case of a life-threatening condition, “he wanted comfort care only, no heroics,” said Dr. Rebecca Aslakson, a critical care anesthesiologist at Johns Hopkins Hospital in Baltimore.
But last month an uncontrollable nosebleed caused the 79-year-old to begin vomiting blood. The nursing home that cared for him sent him to a hospital, where doctors put him on a ventilator. They slowed the bleeding, but couldn’t stop it.
READ MORE
Anita Kunz
When Grief Won't Relent
by Jane Brody
NY Times, February 16, 2015
Bereavement — how one responds and adjusts to the death of a loved one — is a very individual matter. It is natural to experience a host of negative reactions in the weeks and months following the loss of a loved one: among them, sadness, difficulty sleeping, painful reminders of the person, difficulty enjoying activities once shared, even anger.
Grief is a normal human reaction, not a disease, and there is no one right way to get through it. Most often, within six months of a death, survivors adjust and are more or less able to resume usual activities, experience joy, and remember their loved ones without intense pain.
But sometimes, even when the loss is neither sudden nor unexpected, as is true in the majority of deaths in the United States, survivors close to the deceased can experience extremely disruptive grief reactions that persist far longer. READ MORE. . . .
by Jane Brody
NY Times, February 16, 2015
Bereavement — how one responds and adjusts to the death of a loved one — is a very individual matter. It is natural to experience a host of negative reactions in the weeks and months following the loss of a loved one: among them, sadness, difficulty sleeping, painful reminders of the person, difficulty enjoying activities once shared, even anger.
Grief is a normal human reaction, not a disease, and there is no one right way to get through it. Most often, within six months of a death, survivors adjust and are more or less able to resume usual activities, experience joy, and remember their loved ones without intense pain.
But sometimes, even when the loss is neither sudden nor unexpected, as is true in the majority of deaths in the United States, survivors close to the deceased can experience extremely disruptive grief reactions that persist far longer. READ MORE. . . .
