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Incapacitated adults without family or friends benefit from volunteer surrogates that act as medical decision-makers and patient advocates before, during and after hospitalization, according to findings from an innovative program to train surrogates.
Adults without surrogates are often estranged from family, face abuse and neglect, and are at high risk of receiving unnecessary medical treatments as they age. The study, published in the Journal of the American Geriatrics Society, followed the first 50 patients enrolled in Indiana’s Wishard Volunteer Advocates Program, an effort produced by the Regenstrief Institute and Eskenazi Health, a public safety-net health system.
Volunteer surrogates were supervised by Robin Bandy, an attorney and the program’s founding director. Legal guardianship was formally assigned to the Volunteer Advocates Program. More than 90 percent of those who survived hospitalization were transferred to nursing facilities, according to the study, and many continue to receive visits.
Patients ranged in age from 22 to 90; average age was 67. All but one of the patients had at least four medical conditions at the time of hospitalization.
“It’s always been a challenge to find people to speak for adults who don’t have anyone. The adults who are enrolled in our program are people admitted to the hospital with no friends or family who can be their decision-maker or advocate on their behalf,” said Dr. Alexia Torke, a Regenstrief Institute and Indiana University Center for Aging Research investigator. “Some of them don’t have contact with their own family. Some have been abused or neglected by family.”
Volunteers made health care decisions, including end of life decisions, facilitated post-hospitalization placement to nursing facilities and were often the only people to monitor care in nursing homes after hospital discharge. Torke said some patients are able to interact and form relationships with guardians, although many remain unconscious.
“The majority of these patients were so incapacitated by the time they came into our program there was no way they could have done advance care planning,” said Bandy. “We had to go to court to get guardians appointed, because they had no capacity to make their own decisions.”
Among those assigned volunteers after hospitalization: an 85-year-old woman with dementia who had been living alone with her dead cat in a dilapidated apartment; a 65-year-old woman with dementia removed from her son’s care after he broke her arm; a 90-year-old man removed from his home, malnourished and covered in urine and bedbugs – his caregivers were not allowing him access to food or medicine.
“Many patients had not had basic, routine medical care for years,” Bandy added. “It’s important to have someone advocating for the patient, to make sure they get the medical care they need and not only in a crises.”
Some of them don’t have contact with their own family. Some have been abused or neglected by family.
Torke said she hopes the program will serve as a national model to replace or complement the frequently overwhelmed guardianship services provided by state agencies. An incapacitated adult may face Alzheimer’s disease, dementia or coma. Program volunteers are assigned only one or two patients.
“Guardianship services have really been a patchwork state-by-state. Each state has tried to find a solution, and in Indiana there actually were not any state guardians available. There was a desperate need,” Torke added. “We have had no trouble finding volunteers to train, and many have health care or social service experience. This program has tremendous potential to be expanded, however, it is able to take place in Indiana because state law allows this kind of system.” A state statute allows guardianship programs that are not tied to the government.
The Genius of Marian intimately explores the devastating effects of Alzheimer’s disease on a close-knit Northeastern family. The documentary, directed by married couple Anna Fitch and Banker White, focuses on Banker’s 61-year-old mother who is struggling with early-onset Alzheimer’s disease.
The film, made of blurry home movies, one-on-one interviews and family photos, opens with a scene from their 2009 Christmas celebration. Pam White offers her family a jar of macadamia nuts, but mistakenly refers to them as “acadania nuts,” foreshadowing a sharp decline in her cognitive abilities.
Pam, a former model and social worker, often smiles and retains a sense of elegance throughout the film’s most difficult moments. In one extended scene, she is unable to remember how to put on her coat and scarf. In another, she struggles to enjoy a fishing trip at the lake, to the annoyance of her husband, Ed, who serves as her primary caregiver. Not one scene is glamorized.
We learn that in 2008, Pam decided to write a book about her mother, acclaimed painter Marian Williams Steele, who died in 2001 from complications associated with Alzheimer’s. One year into the project, Pam was diagnosed, and was never able to finish it.
“I’ve never made a personal film before. The desire to move home, because we were based in San Francisco, was initially to help my dad out and make sense of things,” Banker told Life Matters Media. “I think it became clear that it could be a very powerful thing to share with other people. The film even helped our family communicate better.”
Anna first became acquainted with Pam through the earliest video recordings. “It made me think about my relationship with my parents,” she said. “I thought this would resonate universally.”
Early in the film, Pam seems to be in denial about her diagnosis. In a tense scene recorded while driving, Banker asks if she remembers her mother’s decline. “She had Alzheimer’s, and I don’t,” she replies. “Didn’t the doctor say that you did have early-onset Alzheimer’s?” Banker asks. “Careful!” Pam says, focusing her attention on the road. She is upset because she can no longer simply take the car and drive to the grocery store.
“There are definitely things that are awkward, but in a documentary you are tasked with managing a relationship between you and your subjects and being honest with the audience,” Banker said. “Alzheimer’s is such an isolating disease, because of the stigma attached with it and the requirements it puts on caregivers.”
According to the Alzheimer’s Association, nearly six million Americans face the irreversible disease, a number expected to increase as the baby boomer generation ages. Nearly one in six women 65 and older will be diagnosed in their lifetimes.
One of the most difficult effects of Alzheimer’s on family and friends is the slowness of the decline, Banker added.
“You are constantly reminded of who this person used to be, while you’re simultaneously losing this person, so there is no space for mourning. You are kind of overwhelmed with the responsibilities of caring and redefining your relationship,” he said. “But there is also a special side, because it does give you time. Some of the most special moments with my parents have happened over the last four years.”
Anna said she believes a lack of hope and response from patients is one of most difficult parts of the disease. “You’re caring for someone who is able to give you less and less as things get more difficult, and that’s just hard,” she added. “There is also no room for hoping it will get better, that there will be a better path ahead.”
In an effort to help patients and families share their experiences, Anna and Banker said they hope to launch an interactive story sharing website in the coming weeks.
Linda Norlander hopes to empower nurses through her latest book, To Comfort Always: A Nurse’s Guide To End Of Life Care, Second Edition. Norlander, a registered nurse and award-winning author, argues that nurses play a vital role in helping provide compassionate, effective end of life care to the seriously ill.
Norlander, recipient of a Robert Wood Johnson Foundation Executive Nurse Fellowship, describes one of her earliest and most difficult nursing experiences in the opening pages:
Thirty years ago when I was a novice home care nurse, I was assigned to Margaret, a 70-year-old woman with terminal liver cancer. She lived with her husband and a disabled son. For five months, I struggled in vain to make her comfortable, to control her pain, to relieve her physical symptoms. I watched her diminish in front of me, her skin breaking down, her eyes glazed with pain, and I felt a growing helplessness. Looking back, I know she sensed my helplessness. I remember walking into her bedroom one day with dread. She was comfortable only in the fetal position on her left side. It was agony for her to be moved. Her husband’s eyes said, “Do something.” In desperation, I held her and asked, “Is there something more I can do for you?”
“No,” she whispered.
I didn’t believe her.
Back then, I didn’t know what I didn’t know. I didn’t know that her pain and symptoms could be managed, that dying is multilayered and multidimensional, and that Margaret’s personal, family, and spiritual suffering could be addressed. I didn’t know the crucial role that nursing could have played in helping Margaret die peacefully and comfortably. I wasn’t truly present for Margaret or her family.
“I chose to use that story because it was very close to me. I really didn’t know how to care for her, and the idea of the book is to know what you don’t know,” Norlander told Life Matters Media. “The book is a primer for nurses who care for the dying. At that time, I really didn’t know how to manage pain or deal with family. It was a turning point.”
Norlander said she believes nurses often provide the best “special care” and holistic medicine to the seriously ill and their families, partly because they provide hands-on care. “Physicians are excellent at disease and disease pathology, but I think nurses are better at holistic care, and nurses are good at developing relationships,” she said.
Published through the Honor Society of Nursing, Sigma Theta Tau International, the revised guide features expanded content on chronic illness, dementia, ethics, grief and suffering. The first edition was released in 2008 and won the Journal of American Nursing Book of the Year award in the medical-surgical category.
“Twenty years ago, when I first got into hospice care, there wasn’t even curriculum or nursing schools on how to care for the dying,” she added.
When asked about any advice she would give to prospective hospice nurses, Norlander said young nurses should be prepared to work diligently and face emotional situations.
“It’s hard work. It’s very rewarding work, but it’s hard work. If somebody wants a job where they punch in at 8 o’clock and punch out at 4:30, this would not be the way to go,” she offered. “I’m not saying that nurses don’t have boundaries, because they absolutely must have boundaries. But sometimes you just can’t put it aside. You have to have a passion for it.”
It is more stressful to care for a frail spouse than for an elderly parent, according to a new nationwide survey conducted by The Associated Press-NORC Center for Public Affairs Research. The vast majority of spousal caregivers unexpectedly find themselves handling the complex medical tasks of nurses, such as managing medications and wound care.
Few Americans have made their wishes for end of life care known, and most 40 and older say they will count on family members to care for them as they age, according to the survey of more than 1,400. Respondents were far more likely to discuss funeral plans with friends and family than their preferences for assistance with daily living.
“Caregiving may start with driving a loved one to the doctor or helping with household chores, but progress to hands-on care, such as bathing. Increasingly, family members are handling tasks once left to nurses, such as the care of open wounds or injections of medication,” according to the AP report. “With a rapidly aging population, more families will face those responsibilities.”
Nearly 15 percent of respondents said they have cared for a spouse or partner.
“The traditional vows are through sickness and health, for richer or poorer, for better or worse,” said 62-year-old Raymond Collins of Houston. “At the age of 25 and 32, you say those things and you’re high on love and healthy, and life is all in front of you. The meanings of those words are pretty much lost, even when you concentrate on them.” Collins retired early to spend time with his wife who was diagnosed with multiple sclerosis 15 years ago. She is now in a wheelchair.
Although Collins said he often felt angry and frustrated by his responsibilities, his marriage was ultimately strengthened in ways he did not expect. “Your relationship changes. Life as you know it becomes different,” he said.
Findings Reflected In Similar Study
According to recent findings published by the United Hospital Fund and the AARP Public Policy Institute, spousal caregivers are significantly more likely than other family caregivers to perform complex medical tasks while being far less likely to receive vital support.
Spousal caregivers tend to be older, less educated and less financially stable than non-spousal caregivers, such as adult children or siblings. The average age of a spousal caregiver is 64, a decade older than non-spousal caregivers, according to the 2011 survey. Nearly 50 percent of spousal caregivers have only a high school education or less, and more than half have incomes of less than $50,000.
“The challenges spouses who are caregivers face are daunting,” said Susan Reinhard, senior vice president and director of the Public Policy Institute and co-author of the report. “Nearly three-quarters of the spouses they care for were taking five or more medications, which are not easy to coordinate. Some of these medications were administered in non-pill forms, including injections and infusion pumps, with greater frequency than one might expect.” Nearly half of spousal caregivers provide care for three years or more.
The AP-NORC Center survey found broad support for tax breaks to help encourage saving for long-term care or for purchasing long-term care insurance. In 2009, there were an estimated 42 million unpaid caregivers in the U.S., providing an estimated $450 billion worth of unpaid care to adult and aging relatives and friends, according to AARP.
Spousal caregivers are significantly more likely than other family caregivers to perform the complex medical tasks of professionals while being far less likely to receive vital support, according to new findings published by the United Hospital Fund and the AARP Public Policy Institute.
Spousal caregivers tend to be older, less educated and less financially stable than non-spousal caregivers, such as adult children or siblings. The average age of a spousal caregiver is 64, a decade older than non-spousal caregivers, according to the 2011 survey of more than 1,600 caregivers. Nearly 50 percent of spousal caregivers have only a high school education or less, and more than half have incomes of less than $50,000. Only one-third are employed.
The most common physical health conditions of spousal care recipients are stroke and hypertension, musculoskeletal diseases (arthritis), heart disease, diabetes, cancer and lung disease. Spouses may be less attuned to changes in cognitive status and sensory deficits, because they spend so much time with their spouses, according to the study.
“The challenges spouses who are caregivers face are daunting,” said Susan Reinhard, senior vice president and director of the Public Policy Institute and co-author of the report. “Nearly three-quarters of the spouses they care for were taking five or more medications, which are not easy to coordinate. And some of these medications were administered in non-pill forms, including injections and infusion pumps, with greater frequency than one might expect.” Nearly half of spousal caregivers provide care for three years or more.
The researchers said they expected to see caregivers reporting their help with activities of daily living, such as bathing, dressing, eating, shopping and managing finances. However, most spousal caregivers also reported performing complex medical and nursing tasks, including medication management, wound care, and using meters or monitors. Seventy-three percent of spouses who said that medication management was one of their two most difficult medical tasks performed it at least daily.
While all family caregivers reported their care recipients received few home visits from health care professionals, spouses fared far worse: 84 percent of spousal care recipients received no home visits, compared to 65 percent of non-spousal care recipients. More than half of spousal caregivers also reported receiving little to no help from friends or family.
“As a former spousal caregiver, I certainly understand the desire to take care of all of a spouse’s needs,” co-author Carol Levine, director of the Families and Health Care Project, told AARP. “But the care that is needed and the responsibilities thrust upon family caregivers by our health care system— typically, without adequate support— are more than any family caregiver, particularly an older spouse, can handle alone.”
It remains unclear why spouses receive less support, but the research suggests it could be due to a lack of awareness about resources, financial limitations or fear of losing independence. Reinhard and Levine call for additional research on spousal caregivers to help better tailor interventions that support, but do not supplant, the bond between spouses. “Spouses may know their partner, but they are not trained to be nurses or social workers.”
In 2009, there were an estimated 42 million unpaid caregivers in the U.S., providing an estimated $450 billion worth of unpaid care to adult and aging relatives and friends, according to an AARP survey.
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Daniel Gaitan serves as a content producer...More