Diane Meier: Palliative Care Improves Quality Of Life, Reduces Medical Spending
Posted on Thursday, December 5th, 2013 at 5:21 pm by lifemediamatters
Half of older Americans visit emergency departments in their last month of life; 75 percent in last six months of life
Palliative medicine helps improve quality of life and reduces unnecessary spending on emergency care for the chronically ill, said Dr. Diane Meier, director of the Center to Advance Palliative Care and a professor of medical ethics at the Icahn School of Medicine at Mount Sinai. Meier was the keynote speaker for “Palliative Care: A Major Paradigm for Care Coordination,” a conference presented by the Illinois Hospital Association in Naperville Thursday.
Meier opened her lecture with the true story of an elderly couple struggling without palliative support:
Mr. B is an 88-year-old man suffering mild dementia and admitted to the hospital via the emergency department for management of back pain due to spinal stenosis and arthritis. His pain is an 8 on a scale of 10 upon admission– he receives 5 grams of acetaminophen (Tylenol) each day. He has been admitted three times in two months for pain, weight loss, falls and altered mental status due to constipation. His 83-year-old wife is overwhelmed.
“He hates being in the hospital, but what could I do? The pain was terrible and I couldn’t reach the doctor. I couldn’t even move him myself, so I called the ambulance. It was the only thing I could do,” Mrs. B told Meier.
Meier pointed out to an audience of palliative care nurses and other medical professionals that among Medicare enrollees in the top spending quintile, nearly half have chronic conditions and functional limitations, just like Mr. B. Most of the costliest 5 percent of Medicare enrollees (61 percent) suffer from similar conditions. Nationally, spending on dementia-related services totaled nearly $215 billion in 2010.
“The emergency department has become the modern death ritual in the U.S.,” Meier added, because half of older Americans visit the emergency department in their last month of life, and 75 percent do so in their last six months.
According to Meier, a palliative care strategy with geriatric support could have helped Mr. and Mrs. B manage symptoms more adequately, and it could even have helped them avoid some unnecessary hospitalizations. “What we need to do is get out of our taxonomy silos, specialty driven silos,” Meier said. “Because of the concentration of risk and spending, palliative care principles and practices are central to improving quality and reducing cost.” The costs of Mr. B’s four most recent hospital visits totaled several hundred thousand dollars. But the Bs did not do anything wrong, Meier said, because the medical system encouraged their situation. What else could they do?
Meier suggested more home and community-based services to help reduce the number of seniors who find themselves in situations like the the couple– lacking an able-bodied caregiver and without an easily accessible medical provider. “Staying home is concordant with people’s goals, she said. “Based on 25 state reports, costs of home and community-based long term care services are less than one-third the cost of nursing home care.” For example, in a study published in the journal Health Affairs, researchers determined that simply having meals delivered to a senior’s home significantly reduced the need for a nursing home.
As HealthDay News reported: “If all 48 contiguous states increased by 1 percent the number of elderly who got meals delivered to their homes, it would prevent 1,722 people on Medicaid from needing nursing home care.” Still, the U.S. lags behind every other industrialized nation when it comes to the ratio of social to health service expenditures.
Hope Brown, a nurse with the Carle Foundation Hospital in Urbana, IL, said she appreciated Meier’s attention to the costs of care and the need for social support. “It happens every day, situations like the Bs. We definitely need to get people into social services earlier, even meal delivery,” she added.
Overall, Meier urged medical professionals to “treat the person, not the disease.” Since most patients prefer to live at home and remain independent, (76 percent rank “independence” as most important, followed by pain and symptom relief, and staying alive last) palliative medicine should reflect those wishes.
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The Accidental Caregiver: An Interview With Gregor Collins
Posted on Monday, December 2nd, 2013 at 8:49 am by lifemediamatters
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.
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Caregiving in America: How Do We Support Those Who Care?
Posted on Saturday, November 16th, 2013 at 4:33 pm by lifemediamatters
Family caregivers are the glue between patients, physicians and medical facilities, said geriatrics expert Dr. Cheryl Woodson during “Caregiving in America,” a conference presented in downtown Chicago this week by Washington Post Live.
“In the new health care paradigm, the caregivers have to be the glue, because the communication systems are not there yet. When you transfer from one facility to another, it is the caregiver who has to be the institutional memory,” Woodson said. “There are specific questions to ask and ways to organize that information.”
Robyn Golden, director of health and aging at Rush University Medical Center, said she is continually “shocked” by how often she meets caregivers who do not identify themselves as such. “The place to catch the invisible caregiver is either in the church basement or in the health system, because many caregivers don’t say, ‘I’m a caregiver.’ So it’s really important we create a safety net to find them,” she said. Caregivers, Golden suggested, need to be asked about how they are feeling and about their overall health.
Golden said it is especially difficult for medical providers to engage with family caregivers as equal partners, partly because physicians and nurses are often overwhelmed with patients and unaccustomed to dealing with caregivers. The result is that caregivers can feel unwanted or invisible to medical providers, and they often miss out on their loved one’s discharge orders or changes in treatments.
According to findings published by AARP’s Public Policy Institute, almost half of family caregivers performed medical or nursing tasks for their recipients facing multiple chronic physical and cognitive conditions in 2012. Nearly 80 percent of family caregivers who provided medical or nursing tasks were also managing medications, including administering intravenous fluids and injections. ”We are asking caregivers to do things that an RN would be nervous to do on their own,” Golden said.
The answer to the caregiver crisis, Golden added, is taking time to teach caregivers their tasks and determine if they even have the capacity to care, as many caregivers still work full-time jobs or are raising young children.
Woodson maintains that a greater safety net of home services and support for caregivers, including assistance for things like placing catheters or preparing infusions for antibiotics, is desperately needed.
When asked what advice she would give to adult children caring for their parents or grandparents, Golden told Life Matters Media: “They should know what they can do and what they can’t do, and then work through any guilt they may have. They should also take advantage of caregiver resources and area agencies on aging.” Golden said many caregivers live like a “club sandwich,” caring for their children, parents and even grandparents simultaneously.
But the best thing for families, Golden said, may be early conversations about aging and end of life preferences. “There is a lot of denial, none of us want to think about getting older. People don’t discuss these issues until a crisis,” she said. “But the media can help change that.”
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Dementia And Advance Care Planning: Hospice And Palliative Care Symposium
Posted on Thursday, September 26th, 2013 at 3:57 pm by lifemediamatters
Every 68 seconds, someone in America becomes diagnosed with dementia, Dr. Shellie N. Williams, of the University of Chicago Pritzker School of Medicine, told physicians and medical professionals Wednesday during her lecture “Dementia and Advance Care Planning.” As part of the Hospice and Palliative Care Symposium at the Chicago Botanic Garden, Williams encouraged physicians to discuss advance care planning more often with their seriously ill patients to ensure that their end of life wishes are followed.
Dementia, a serious and life-threatening illness, currently affects more than five million Americans; nearly one-in-five American seniors will die of complications associated with the disease. By 2050, someone will be diagnosed with the chronic and progressive disease every 33 seconds. “Dementia is the fifth leading cause of death in the U.S. right now, and every time I put up a slide showing this people are surprised,” Williams said. “We think a little dementia is something that goes along with aging, but dementia is not a natural consequence of aging.”
Planning for dementia can be more difficult than planning around other life-threatening diseases, because dementia affects patients’ judgement and wishes over time. Crying, mood swings and hallucinations are common among individuals with moderate to severe symptoms. Often, Williams said, seniors wait too long to have such conversations until it is too late. Only 36-60 percent of individuals with dementia had completed some form of advance care plan in 2008.
Dementia is also more common among African-Americans and Hispanics than among other ethnic groups, Williams said. She cited an article published
by Alzheimer’s and Dementia in which researchers found 63 percent of Hispanics and 59 percent of African-Americans over age 85 were likely to develop the disease. These numbers are starkly different than the rate among whites- 30 percent. Almost 9 percent of African-Americans and 8 percent of Hispanics between 65 and 74 will develop some form of dementia, opposed to just 3 percent of whites. Williams pointed out that hypertension and diabetes are more prevalent within these populations, and they may contribute to the increase.
Research shows minorities are much more distrustful of the medical establishment than whites– partially due to their history of inadequate care and language barriers– and that skepticism often leads them to opt for more aggressive end of life treatments.
Throughout her career treating patients, Williams said families of those with dementia tend to prefer inclusion during the decision-making process, honesty from physicians and privacy. Among patients, 75 percent say they want no CPR, mechanical ventilation or artificial hydration or nutrition. Most opt for pain and symptom management and an overall sense of control.
Williams suggested that physicians initiate end of life discussions with their patients earlier- when they are are healthy and with a close family member present. Eye-contact, patience, empathy and respect on the part of the physician may also help foster quality in end of life discussions.
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Preparing for the dementia tsunami, a TEDMED discussion
Posted on Saturday, April 20th, 2013 at 10:32 am by Life Matters Media
As millions of aging Americans face cognitive decline, waiting for a cure to dementia is not an adequate plan for the future. So, TEDMED facilitated a live discussion about some possible solutions to the dementia epidemic with health care experts this week, as part of its Great Challenges series.
By 2020, there will be 43 million Americans 65 and older, 15 million 85 and older- double the numbers of 1980. The costs of dementia-related care will more than double by 2040, according to new findings published in The New England Journal of Medicine.
One of the most important solutions will be training all health care professionals about the issues of the aging population, said Dr. Sharon Brangman, a professor of medicine and division chief of geriatric medicine at SUNY Upstate Medical University. ”The fastest growing segment of our population are those people 85 and older, where the biggest risk for Alzheimer’s disease is.”
Echoing Brangman’s ideas about educating doctors and pharmacists was Dr. Guy S. Eakin, vice president of scientific affairs at the BrightFocus Foundation.
“The scale of the problem is huge. Right now, less than 1 percent of our nurses, our physicians assistants, and our pharmacists are certified in geriatrics, but 26 percent of their patient visits are from geriatric populations,” Eaken said. “That’s a huge discrepancy and training programs are necessary.”
The discussion was not intended to formulate concrete solutions, but provoke thoughts about possible remedies to address cognitive disease and the barriers to achieving them. For example, George Vradenburg, the chairman and co-founder of the USAgainstAlzheimer’s Network, noted the lack of funding available for research.
“Today we spend about $6 billion on cancer research, $3 billion on HIV and AIDS research, and less than $500 million a year on Alzheimer’s and dementia research,” Vradenburg said, while acknowledging concern about the sequester’s impact on medical grants through the National Institutes of Health. “The cost problem is an enormous one in this country.”
How can individuals help lower their chances of getting dementia? Brangman suggested exercise- even just walking to the mall from farther parking spots. Vradenburg said there may be a relation between cardiovascular disease and cognitive decline. “Being healthy gives you greater resistance to disease, but it doesn’t stop the disease,” he said.
Still, despite the lack of funding and volunteers in the U.S. for dementia research, “there really is no system doing it better,” Brangman said. “I really think the United States is the leader, we see a demographic shift in the whole world, where there are fewer young people.”
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