The Life Matters Media Newswire aims to serve as a comprehensive portal of all news related to end of life decision making and care. We aggregate stories from other media outlets in one place- here, where you can access them easily. We also strive to produce original content covering stories we feel are receiving scant attention.
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.
Dr. Alexia Torke, an assistant professor of medicine at Indiana University, spoke to a packed auditorium of medical students and physicians at Northwestern University about the importance of surrogate decision-makers for elderly patients.
Historically, Torke said, surrogates have been considered individuals relying on advance health care directives to make decisions for patients. Much of prior research on surrogate decision-makers focused only on decisions and patient wishes.
“If you placed a patient and a surrogate in separate rooms and asked the patient what they would want in a health scenario, and then ask the surrogate what they would choose for the patient, concordance is only 68 percent, not so great,” Torke said.
Surrogates are often needed to make difficult decisions regarding life-sustaining therapies like mechanical ventilation and dialysis; surrogates are involved in about half of all hospitalizations of older adults. Nearly half of families are at risk of “substantial distress,” Torke added. Unresolved grief, family issues and disagreements about care may contribute to surrogate stress.
It often falls on surrogates to establish relationships with their loved one’s medical team. When communication between surrogates, patients and physicians is poor, it is more likely that physicians and decision-makers will have differing goals of care.
Torke identified three elements of high-quality decisions: informed by clinical evidence, concordant with values and mutually endorsed.
“Surrogates must understand the patient’s medical status, potential risks and benefits, and then get professional opinion and a recommendation,”she said. “So, ideally decisions would be concordant with both clinician and surrogate values, as well as the patient’s as far as they’re known.” Realistic goals of care may be referral to palliative care and less aggressive end of life treatments.
New findings she published in JAMA Internal this month found nearly half of older patients needed help making decisions within two days of being admitted to the hospital. Patients who needed a surrogate experienced a more complex hospital course with greater use of ventilators and artificial nutrition.
“It’s not so much that having a family member make decisions for you makes things worse,” Torke told Reuters. “It’s that people who need decision makers are sicker.”
Of the nearly 1,600 seniors studied between 2008 and 2011, only 7 percent had a living will; 25 percent had a health care representative document in the medical record. More than half of surrogates were daughters, followed by sons or spouses.
“Highlighting the complexity of communication between surrogate decision-makers and physicians is important,” said Dr. Rashmi Sharma, a palliative care physician at Northwestern’s Feinberg School of Medicine. “We really do focus a lot on the patient side of things, like identifying what the patient’s preferences are and communicating with them. But the data Alexia went through reminds us just how often surrogate decision-makers are actually making decisions in the hospital.”
Sharma said the focus on patient autonomy sometimes leaves family out of important medical decisions. “We think of family as not being critical participants in the decision-making process. We need more research on how we can improve this process and help decision-makers be as informed as they need to be.”
Carrie Jackson spent the better part of her twenties caring for her ailing father who was suffering from severe Alzheimer’s disease. As her father’s primary caregiver, Carrie spent years watching his health decline and managing his care.
Henry George Jackson Jr. died in 2012, after nearly three years in hospice care. Carrie currently serves in the Memory Care unit at the Mather Pavilion in Evanston, IL, and she is on the Junior Board of the Alzheimer’s Association. She contributed an essay set to be published next month in Chicken Soup for the Soul: Living with Alzheimer’s & Other Dementias.
Why did you choose to share your experiences of caring for your father?
Jackson: Alzheimer’s is the sixth leading cause of death in the United States, and no one knows that. It’s also severely underfunded.
People think it’s a memory disease, but it’s so much more. It’s language, it’s perception, it’s judgement, and it ultimately shuts down the entire body. End-stage Alzheimer’s is non-verbal, requiring total care, involving hallucinations and terrors, and people not being able to move their limbs. It’s a horrible, horrible disease.
Caring for dad really changed my life. I was in my mid-twenties and my friends were dating and going on job interviews and getting married and having kids, and I would always be like ‘I have to leave early to go to the hospital.’ I was his advocate, and he really didn’t have anyone else. So, I feel that I need to share.
What is the hardest part of caring for an individual suffering from Alzheimer’s or dementia?
Jackson: There becomes less and less that the person afflicted can do for themselves. Early-stage is really difficult because they argue with you and hide things. When I first started taking care of Dad, I looked at his check book and I found that he had not paid rent in three months. He was making donations to anyone who would solicit him, so donations to the Republicans, to the Democrats, and even to the Ross Perot Party.
I remember there was a big fight when I had to take his keys away after he failed his driving test for the third time. That was the only time we almost got into a physical altercation.
It was very hard telling him he could not go for walks by himself anymore, because he might not know how to get home. He also had some colorful words that he would use on a regular basis while on the streets of Evanston. He developed an irrational fear of sprinklers, so every time he saw one he would swear at it and at the person who put it there. People didn’t understand that it was the disease talking, not him.
What advice do you have for adult children caring for seriously ill parents?
Jackson: You have to find support, you have to. It sounds so cliche. It helps to relate to someone going through a similar situation. Sometimes you don’t need an answer, you just want someone who will listen to you, someone you can vent to and be like ‘this sucks.’
After witnessing your father’s decline, do you fear Alzheimer’s?
Jackson: Alzheimer’s is my biggest nightmare. I am just absolutely scared of it.
At work we try to create moments of joy for those facing it. I do Alzheimer’s training for the new volunteers, and I tell them that a beautiful thing about the disease is that the person afflicted has no recollection of the past and the future doesn’t mean anything. If you say lunch is in 20 minutes, it doesn’t mean anything. They live and are truly engaged in the moment. I try to make that moment positive; the best thing we can do is make them happy.
Read an except from her essay here
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Daniel Gaitan serves as a content producer...More