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.
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
Life Matters Media was given permission to share an excerpt from Carrie Jackson’s essay set to appear in Chicken Soup for the Soul: Living with Alzheimer’s & Other Dementias. Jackson’s father died from Alzheimer’s disease in 2012, after nearly three years in hospice care. Jackson serves in the Memory Care unit at the Mather Pavilion in Evanston, IL, and on the Junior Board of the Alzheimer’s Association. Her essay recounts an afternoon visit to her father in his nursing home.
The Hand that Feeds
By Carrie Jackson
Music is one of my best ways to communicate with him so I start singing to him about Daisy and the bicycle built for two. My pitch and tone are way off, but I don’t care. It’s one of our favorite songs, and after a minute his eyes open. I ask him if he’s ever ridden a bicycle built for two. He says no, and I remind him how he used to put our dog Rusty in the grocery basket of his old bike and give him rides around Evanston. Finally, I get a smile. Then the moaning starts again.
I ask where it hurts: this time, it’s his shoulders. Jeff says he’s already had his pain medicine and we’re waiting for it to kick in. I ask Jeff if the hospice volunteer came today. He says yes; Dad says no. I believe Jeff. I put on some music. Ellington. We’ve changed the words a bit.
In our version, it’s “If you want to get from Sugar Hill to Harlem, you better take the A train.” We sit. His hands are soft. Softer than mine. His arms are splotched with purple and red marks. I take note of a few new bruises and cuts.
It’s dinnertime, and lately Dad has been taking his meals in his room. Jeff brings in some soup. Tomato barley. I stir it, taste it, and scald my tongue. After a few minutes it’s ready and I ask Dad to open his mouth. He does, takes a bite of soup and makes a horrible face but it stays mostly in his mouth. He chews for almost a minute and I wonder how that’s possible. I don’t see him swallow, but the chewing stops. I try with another spoonful, and another. Four more bites and he’s had enough. The bib is covered with spills. I wipe his mouth and nose. I haven’t seen him eat this much in months. Jeff brings in his plate.
Chicken and mashed potatoes. I know Jeff usually ends up feeding him Ensure, yogurt, and dessert—that seems to be all Dad will take these days. But I’m here, so we try for solid food and whole nutrition. And he eats. It surprises even me, but his eyes are closed and he’s reluctantly accepting every bite I bring to his mouth. Chew, chew, drool, chew, spit, moan, chew, swallow.
With each bite I feed him, I am reminded of what his doctors and the hospice team keep saying—as long as he has nutrition and is able to take food, he could survive for quite some time. And I think of the pain he is in. And I think of the loneliness in his eyes when I’m not there. And I wonder if what I’m doing is helping or hurting. He is chewing, swallowing, digesting. He is surviving. But is that what he wants? Is it worth it?”
Chicken Soup for the Soul: Living with Alzheimer’s & Other Dementias will be released April 22, 2014.
There are at least 1.5 million lesbian, gay, bisexual and transgender seniors in the U.S., a population expected to more than double by 2030, according to recent findings by the Department of Health and Human Services. As the 65 and older population grows, many LGBT seniors will face discrimination based on their age and sexual orientation.
In an effort to better understand this population, in 2010 the Administration on Aging provided funding to SAGE (Services and Advocacy for GLBT Elders) to create the National Resource Center on LGBT Aging (NRC). It is the nation’s first national technical assistance resource center focused on the health and social disparities of LGBT seniors.
“One of the biggest issues is that LGBT older adults do not feel comfortable or safe in certain environments,” said Christina DaCosta, online media manager for SAGE. “We at SAGE and the NRC are working to create a shift in attitude via our training efforts, local and national advocacy.” A network of SAGE affiliates has been created across the country to serve LGBT seniors at the state and local level.
According to a 2010 report co-authored by SAGE and the Movement Advancement Project (MAP), LGBT seniors may face an array of unique barriers and inequalities standing in the way of a healthy and rewarding later life. The report identified three major challenges: the effects of social stigma and prejudice; a strong reliance on informal “families of choice” for social connections and care; and unequal treatment under laws, programs and services.
Historical and current prejudice against today’s LGBT seniors has “disrupted their lives, their connections to their families of origin, their chance to have and raise children, and their opportunities to earn a living and save for retirement,” according to Improving The Lives of LGBT Older Adults. Many still remember their sexual orientation being labeled as a “psychiatric disorder” or “immoral.” And nearly one-third of gay and lesbian baby boomers identify discrimination from caregivers and health service providers as their greatest concern about aging.
About 80 percent of long-term care provided to U.S. seniors is provided by family members, but LGBT seniors are half as likely as heterosexual seniors to have close relatives they can call for help– many are estranged from their biological families. They are also about twice as likely to be single, and about three times more likely to be childless. Therefore, many have come to rely on a close network of friends and community members, despite the many laws and institutional regulations that prioritize biological, legal and traditional families; in many instances, such regulations deny resources and support to same-sex partners, “families of choice” and other caregivers.
“Even as our country moves closer to insisting on fair treatment and full opportunity for all of our people, the effects of long-standing discrimination against the LGBT community remind us of how far we still have to go,” wrote AARP Chief Operating Officer Tom Nelson.
A similar 2011 study published by the University of Washington’s School of Social Work also determined LGBT seniors are more likely to face loneliness and distress than others. Researchers surveyed about 2,500 LGBT adults ages 50 to 95 from across the U.S.
“The higher rates of aging and health disparities among lesbian, gay, bisexual and transgender older adults is a major concern for public health,” lead author Karen Fredriksen-Goldsen told a health newswire. “The health disparities reflect the historical and social context of their lives, and the serious adversity they have encountered can jeopardize their health and willingness to seek services in old age.” More than 20 percent of respondents did not disclose their sexual or gender identity to their primary care physician.
“The LGBT community has stepped up in the past to address coming out, AIDS, and civil rights. The next wave has to be aging,” said a 63-year-old man who participated in the study.
When Gregor Collins began caring for noted Austrian Holocaust refugee Maria Altmann nearly five years ago, he did not expect his experiences to evolve into the most profound and intimate relationship of his life. The aspiring actor/producer also did not foresee a critically acclaimed memoir detailing their unique bond, or his involvement in A Good Day To Die- an upcoming feature film exploring end of life issues with a comedic perspective.
Now 37, Collins spoke to Life Matters Media about his relationship with Altmann and his caregiving experiences. His first book, ‘The Accidental Caregiver,” was published in 2012. Altmann died in 2011 at age 94 with complications associated with dementia. She is remembered for her successful legal campaign against the Government of Austria to reclaim five family-owned paintings by the artist Gustav Klimt; the paintings were stolen by the Nazis during World War II.
How did you become a caregiver for Maria Altmann?
I was never drawn to it. Actually, it was never something I considered doing. I was just living this selfish life in Los Angeles and pursuing acting pretty heavily. A good friend of mine called me and said, ‘I’m taking care of this woman from Austria and she’s awesome, you have to meet her.’ I sort of blew him off a bunch of times, but then he told me that the family really wanted another caregiver. I finally agreed to meet her, and my life changed right there. It was like the first time in my life I cared for somebody besides myself, really.
I was definitely not a perfect caregiver. I didn’t have any skills or know anything about medicine. All I had was a good heart, and she was unbelievably amazing. She brought the best out of me. I was hired as a caregiver, but I became her companion- someone she wanted to have around to talk and laugh with. I wanted to be there every day. She was like a mother, a grandmother, a friend, even a lover from another lifetime.
Los Angeles is a lonely place, so it was nice to talk with her about art, the weather– she satisfied me in a romantic way, like we wished we could have met 70 years ago. We just clicked, you know.
What was the most difficult part of caring for someone?
Because I really fell in love with her, it was difficult to see the aging. It is really difficult to see someone you love and know that they won’t be around. That’s the hardest part.
Whenever I got emotional around her, I would leave the room. There were many occasions she would say something so sweet to me. One time we were driving and she said to me, ‘You’re going to miss me. I’m going to miss you.’ I started crying out the window, and she never knew. Towards the end, I cried in front of her for the first time, and I felt guilty- like she would know she is going to leave soon. But she almost giggled at me because she thought it was so cute.
How did you interact with Maria when she was feeling ill?
She developed some dementia towards the end. When I met her a few days shy of her 92nd birthday, she was right on the ball. After the Klimt case, her oldest son tells me that she was sharp as a tack until 90. She would talk to reporters in Italian and French and German, and would really get the media laughing and on their toes. After the paintings came in, she felt like she could wipe her hands and just be an older woman. It was never close to the point where she couldn’t recognize me, but I could leave the room and come back- and she would think I was coming back for the first time.
Often times with Maria, I saw firsthand how exposure to love and youth were more powerful than medicine. Instances where she was in pain or not her usual effervescent self, I would play her an opera, or I would walk in the room with a smile. These little things brought more life and joy and love to her face and body. The notion of ‘love is more powerful than medicine,’ I stand by it.
Also, I read that when it comes to Alzheimer’s and dementia, all the top doctors and medical professionals agree that medicine is not the most powerful or effective means to fight them– keeping minds active and stimulated is. I felt that was part of my job to keep her mind scintillated, and I really believe this extended her life and kept her dementia at bay as long as humanly possible.
Why did you choose to write ‘The Accidental Caregiver’?
I kind of wrote it because I felt like it was one of the most important things I could do in my life. I needed to preserve her legacy and our relationship. I also wrote it because I was so emotional, and it was an intensity. It was just me alone in a room at night crying or laughing about the day. It was really touching and surprising when people started to connect with it. I never expected the response.
- Advance Care Planning
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- Health Care
- Stopping Eating And Drinking To Hasten Death
- Filming “Prison Terminal” Was “Soul Sucking”
- Illinois Prepares For New POLST Form
- Hospice Behind Prison Walls
- Frailty: American Health Care Unprepared For How We Now Die
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Daniel Gaitan serves as a content producer...More