‘End Game’ Film Shows the Struggle in End-of-Life Decisions

Republished from: https://www.nextavenue.org/end-game-documentary-end-of-life-decisions/

The Oscar-nominated documentary also spotlights palliative and hospice care

By Deborah Quilter
April 9, 2019

In a pivotal scene of the documentary End Game, we listen in as a team of palliative care professionals discusses Mitra, a 45-year-old woman who is dying of cancer. Should they approach her about hospice? The hospital chaplain urges the group not to bring it up. She had spoken to Mitra’s mother, who told the chaplain that to Mitra, hospice means death. Dr. Steven Pantilat, a palliative care specialist, agrees with her assessment, noting: “Healthy people want to talk about how they want to die. Sick people want to live.”

This exchange in End Game (available on Netflix) captures human nature, and the delicate dilemma doctors and patients face at the end of life, under the best circumstances. Filmed in the serene hospital rooms and corridors of the University of California San Francisco Medical Center and the recently-closed Zen Hospice Project, situated in a tastefully-appointed Victorian house, we see firsthand the inner workings of hospice and palliative care.

We also see clearly how important it is to talk about these matters before we might need them.

Considering Palliative and Hospice Care

Though palliative and hospice care can greatly ease suffering, they are not easy to talk about or decide on for many patients. Some of the people in the 40-minute documentary are not ready to check out and seem to feel that accepting hospice care would mean accepting death. Their family members don’t want to let them go either.

Mitra’s husband hopes each new treatment will bring a miraculous recovery. Her mother knows her daughter will never walk again, much less recover from cancer and thinks her daughter is suffering. In one scene early in the movie, which is doubtless replicated in many hospital rooms every day, Pantilat asks Mitra’s husband and mother if they want to continue treating the cancer.

“If she were clear in her thinking and seeing herself in her bed the way she is right now, what decision would she make?” Pantilat asks. The question hovers in the air.

When Mitra’s sister flies in from Switzerland, initially there is jubilation over the reunion and we rejoice vicariously with the family. In the next scene, however, we see the sister collapsing in her mother’s arms in the hallway, weeping. Later, we see Mitra’s mother literally staggering down the hallway under the weight of her sorrow. We witness Mitra’s husband’s heart breaking, and their 8-year-old son playfully massaging his mother’s bald head.

There is joy, sorrow, love. The camera captures it all, but there is no narration. We witness the family’s struggles as they go through them in real time. This is part of the film’s power: It is easy to identify with the subjects. Viewers might feel they are losing their own family member.

The Filmmakers’ Vision: Bring Death Out of the Closet

The 40-minute film, directed by Rob Epstein and Jeffrey Friedman, was nominated for an Oscar in the category of Documentary Shorts.

The filmmakers, who won an Oscar in 1985 for The Times of Harvey Milk, wanted to raise awareness about how palliative and hospice care can give us the right care at the right time. As Friedman explained, birth and death are universal life passages, and of those, death is the one we have the option of facing consciously.

“Most of us avoid thinking about it until it’s too late. By doing that, we set ourselves up to lose control of our life story when we’re at our most vulnerable,” Friedman says. “Couple that with medical technology so advanced that we can keep nearly everyone ‘alive’ using machines — but without taking the time to talk about what the quality of that life will be. The result is that far too many people are getting care they don’t understand and don’t want.”

“End Game is about choices we make about how we want to live, when we know our time remaining will be brief,” Epstein adds. “One of our goals in End Game was to inspire conversations — not only about facing death, but about how we want to live, right up to the end.”

End-of-Life Care Explained

According to Pantilat, author of Life after the Diagnosis: Expert Advice on Living Well with Serious Illness for Patients and Caregivers, “Palliative care focuses on improving the quality of life for people with serious illness (whatever the prognosis). It alleviates symptoms like pain, shortness of breath, fatigue and nausea. It’s also about having patients communicate preferences and values, so the care team can attend to their psychological, spiritual and emotional support when they are sick.”

In the United States, hospice is a service to provide palliative care to people, largely at home. For hospice, the eligibility criteria include a prognosis of no more than six months of life and patients and loved ones who have agreed the focus will be comfort care.  Hospitalization, generally, will be avoided.

“Most of the time, hospice is not a place, but a service, although there are facilities focused only on hospice care (as Zen Hospice Project was). All hospice is palliative care, but not all palliative care is hospice,” Pantilat explains.

Many people have the misconception that once you choose palliative care, you’re not getting any other treatment for your illness. “That’s not true at all,” Pantilat says. You could have palliative care alongside chemotherapy, bone marrow transplant and many other serious illnesses. In fact, palliative care might help you live longer.

“There’s never been a study that showed that people who receive palliative care live less long. And there are studies that show that people who receive [palliative care] for the illness live longer. It’s an unmitigated good.” Pantilat says.

Help for the Family, Too

There’s another important feature of palliative care: It also attends to a dying person’s loved ones. The palliative care team will talk to family members and offer them comfort, options and counsel.

Pantilat notes: “When people ask, ‘When should my family come?’ I always say come now. If they get better and live for another six months or year or two, no harm, no foul. It’s one more visit. But if you try to time it when they’re really sick and on death’s door, they might be too sick to have a meaningful interaction or you might miss the opportunity. Things can happen suddenly.

“We try to have these conversations in advance and understand what’s really important,” Pantilat continues. “If visiting with your sister or seeing your daughter get married is the most important thing to you, now’s the time to do it. Maybe you shouldn’t wait 10 months for a wedding, because you may not make it. Instead, could your daughter move the wedding up to next month?”

And speaking of not waiting, the doctor has a message: “If you or a loved one has a serious illness, you should have palliative care. Don’t take no for an answer. Because it will help you live better and may even help you live longer.”

Deborah Quilter is an ergonomics expert, a certified Feldenkrais practitioner, a yoga therapist and the founder of the Balance Project at the Martha Stewart Center for Living at Mount Sinai Hospital in New York. She is also the author of Repetitive Strain Injury: A Computer User's Guide and The Repetitive Strain Injury Recovery Book.

Why Lifting Weights Can Be So Potent for Aging Well

Republished from: https://www.nytimes.com/2019/03/20/well/move/lifting-weights-exercise-older-aging-muscles-psychology.html?smid=nytcore-ios-share

People who discovered that they enjoyed and felt capable of completing a weight-training session subsequently joined a new gym and showed up for workouts.

By Gretchen Reynolds

March 20, 2019

Weight training by older people may build not only strength and muscle mass but also motivation and confidence, potentially spurring them to continue exercising, according to an interesting new study of the emotional impacts of lifting weights.

The findings intimate that people worried that they might be too old or inept to start resistance training should perhaps try it, to see how their bodies and minds respond.

We already have plenty of evidence, of course, that weight training can help us to age well. By our early 40s, most of us are losing muscle mass, at a rate of about 5 percent a decade, with the decline often precipitating a long slide toward frailty and dependence.

But older people who lift weights can slow or reverse that descent, studies show. In multiple experiments, older people who start to lift weights typically gain muscle mass and strength, as well as better mobility, mental sharpness and metabolic health.

But lifting helps only those who try it, and statistics indicate that barely 17 percent of older Americans regularly lift weights.

So, as part of a larger study of weight training and the elderly, scientists at the University of Jyvaskyla in Finland recently decided to see if they could discover how weight training changes the minds as well as the musculature of people who had not done it before.

To start, they turned to 81 older men and women who were part of their health database and who had agreed to begin resistance training. These volunteers were all between the ages of 65 and 75 and, like many Finns, healthy and physically active. But they did not lift weights.

For the full study, they began a twice-weekly program of supervised, full-body resistance training at the university to familiarize participants with proper technique and build a base of strength.

After three months, the group was randomly assigned to continue training once, twice or three times a week, while a separate, untrained group served as controls. Periodically, the researchers checked the volunteers’ strength, fitness and metabolic health, and also their attitudes about the workouts, including whether they found them daunting or inviting and how difficult it was for the volunteers to find the time and resolve to show up.

This routine lasted for six months, by which time the people lifting weights had almost all gained strength and improved various markers of their health, even if they had lifted only once a week.

But then, after the months of supervised lifting, the exercisers abruptly were on their own. The researchers explained that they could no longer have access to the university facilities and provided them with information about low-cost, suitable gyms in the area. But any subsequent training would be at their own volition.

The researchers waited six months and then contacted the volunteers to see who was still lifting and how often. They repeated those interviews after an additional six months.

They found, to their surprise, that a year after the formal study had ended, almost half of the volunteers still were lifting weights at least once a week.

“We had estimated a rate of 30 percent,” says Tiia Kekalainen, a project researcher at the University of Jyvaskyla who led the psychological study with the senior author, Simon Walker, and others.

Also surprising, the researchers discovered little direct correlation between muscle and motivation. The people who had gained the most strength or muscle mass during the study were not necessarily those most likely to stick to the training.

Instead, it was those who had come to feel most competent in the gym. If someone’s self-efficacy, which is a measure of confidence, had risen substantially during the study, he or she usually kept lifting.

In effect, Ms. Kekalainen says, people who discovered that they enjoyed and felt capable of completing a weight-training session subsequently sought out and joined a new gym and showed up for workouts, despite no longer receiving nudges from the researchers or encouragement and companionship from their fellow volunteers.

“They found out that resistance training is their cup of tea,” Ms. Kekalainen says.

Most of them also told the researchers that weight training had provided them with renewed confidence in their physical abilities beyond the gym.

“They could do things that they thought they could not do before,” she says.

Of course, about half of the volunteers had told her and the other researchers that “they preferred other types of exercise,” Ms. Kekalainen says, and those men and women, for the most part, no longer lifted weights.

Ms. Kekalainen and her colleagues hope in future studies to explore the issues of what drew some people to the lifting and left others uninspired, and how weight-training routines might be structured to appeal to the skeptical.

For now, people interested in starting to lift weights should look for classes or trainers specializing in beginners and learn to lift safely.

But the overarching lesson of the study, she says, is that to discover how you feel about weight training, you need to weight train.

Saving our Seniors Thousands for Skilled Nursing Care

Republished from: https://iqconnect.lmhostediq.com/iqextranet/view_newsletter.aspx?id=278376&c=CT02JC

By Joe Courtney, Member of Congress (D-CT)

On Tuesday, I joined my colleagues Congressman Glenn ‘GT’ Thompson (R-PA) and Senator Sherrod Brown (D-OH) to reintroduce the Improving Access to Medicare Coverage Act of 2019, a bipartisan and bicameral bill to fix an arbitrary Medicare policy that excludes coverage of skilled nursing care for seniors, who can end up facing thousands upon thousands of dollars in unexpected, out-of-pocket costs for care that was professionally prescribed. Medicare policy requires patients to spend three days as an “inpatient” in order to qualify for Medicare coverage of skilled home nursing care after they leave the hospital. However, for thousands of patients who are classified arbitrarily as “under observation” while they’re in the hospital, Medicare won’t cover their nursing home care, even if they stay for the requisite three days. This gap in coverage is a crisis waiting to happen for so many families in eastern Connecticut and across the country. Whether a patient is in the hospital for three days as an inpatient or for three days under observation status, semantics should not keep Medicare recipients from accessing the care they’ve been prescribed by health care professionals, or force them to go into medical debt in order to cover the cost.

The Negative Effects of Elderspeak

Republished from: https://www.nextavenue.org/negative-effects-elderspeak/?utm_source=Next+Avenue+Email+Newsletter&utm_campaign=2df823c5bc-03.07.2019_Thursday_Newsletter&utm_medium=email&utm_term=0_056a405b5a-2df823c5bc-166418341&mc_cid=2df823c5bc&mc_eid=3d5dd74a35

Talking down to older adults is not only disrespectful, but it can be detrimental

By Julie Pfitzinger
January 9, 2019

Faye Kirtley doesn’t appreciate it when store clerks talk down to her and act as if “I don’t know what I’m doing,” she said.

“It’s embarrassing, and I don’t know why they think it’s okay to treat an older person like that,” added the 88-year old resident of Bardstown, Ky. “Maybe they have people in their family that they talk down to, too.”

Barbara Tack, 76, of Exeter, N.H. cringes at diminutives such as “miss” and “little lady” and has been known to correct a supermarket cashier on the impact of those monikers.

“I told him, ‘I am not young, and I think it’s an insult to call attention to my age at all,’” said Tack. “He did seem chagrined, so I tempered it with something like, ‘It makes me feel bad that all you can see is my age.’ But I hear that kind of condescending comment way too often.”

Tack also shared a story about a friend, a 70-year-old man, who was offended by what he perceived to be very childlike instructions given to him by a nurse in a doctor’s office: “Sorry, you have to remove your sweater for me to take your blood pressure. I know it’s cold outside and you can put it back on right away.”

Elderspeak Reveals Perception

What Kirtley and Tack are describing are signs of what is referred to as “elderspeak.” It occurs when an older adult is spoken to by health care workers, service personnel, neighbors or even family members as if he or she is a child with limited understanding.

In a recent article in The Chicago Tribune, Anna I. Corwin, an anthropologist and professor at St. Mary’s College of California in Moraga, noted that elderspeak “sounds like baby talk or simplified speech” and is, in fact, a symptom of how older adults are often perceived.

“Americans tend to view and treat older adults as no longer productive in society. And that’s how we define personhood, as an adult who is a productive member of society,” Corwin said.

Elderspeak involves talking slowly and at a louder volume, with pronounced enunciation; it also employs the frequent use of words such as “sweetie,” “dear” or the pronoun “we” when referring to the older person (as in, “Do we want to go to dinner now?”).

The Negative Impact of Elderspeak

Not only is this type of speech condescending and disrespectful to older adults, it can be damaging to their mental health and well-being.

According to Becca Levy, a researcher on a study on the effects of elderspeak, by Yale University, the practice “sends a message that the patient is incompetent, and begins a negative downward spiral for older adults who react with decreased self-esteem, depression and withdrawal.”

Further, those living with mild to moderate dementia can be even more negatively impacted by this type of language. These people can become aggressive or uncooperative when elderspeak is used, according to the Yale report.

The Importance of Respect

In an article about the dangers of ageism by LifeCare Advocates, a care management practice based in Newton, Mass., one of the tactics mentioned for reducing the use of elderspeak involves training health care workers not only to refrain from using diminutives, but to ask the older adult how he or she wants to be addressed. For some of them, the automatic use of their first names demonstrates a lack of respect.

Kirtley, who tends not to correct those who speak down to her for fear of “causing an incident,” still decries the practice of elderspeak. She’d be happier to always be treated with the respect she said everyone deserves.

“It’s an issue of dignity,” Kirtley said.

Julie has worked as a writer and editor for more than 20 years; most recently she was a managing editor for the community lifestyle magazine group at Tiger Oak Media in Minneapolis, where she also served as editor of Saint Paul Magazine. Julie can be reached via email at jpfitzinger@nextavenue.org    Follow her on Twitter @juliepfitzinger.

Just Diagnosed - Questions for your doctor

Republished from: https://alz.org/help-support/i-have-alz/know-what-to-expect/just-diagnosed?WT.mc_id=enews2019_02_08&utm_source=enews-aff-28&utm_medium=email&utm_campaign=enews-2019-02-08

After receiving your diagnosis (Alzheimer's), it's normal to leave your doctor's office unsure of what questions to ask. You just received life-changing news, and you need time to absorb this information and understand what it means for you and your family.

Your doctor is an important member of your care team. Use the opportunity to ask your doctor questions about your diagnosis, all the available options, and the benefits and risks of each choice you make.

You may be asking: "How do I know what to ask my doctor?"

Members of our Alzheimer's Association National Early-Stage Advisory Group have shared their own experiences and questions they wish they had asked their doctors. You may find this information helpful as you develop your own list of questions.

Here are some example questions:

The diagnosis of Alzheimer's disease

1. What test(s) or tools did you use to determine my diagnosis?
2. What are you measuring with the tests you performed?

Alzheimer's disease

1. How will the disease progress?
2. What can I expect in the future?

Treatments

1. What treatment options are available?
2. Which symptoms are being targeted by each medication?

Clinical trials

1. What clinical trials are available?
2. Where can I find published information about clinical treatment studies?

Care team

1. How familiar are you with Alzheimer's disease? Will you be managing my care going forward?
2. If I need to be hospitalized, will you be able to provide care in this setting?

Care and support

1. What resources are available to help me learn more about my diagnosis? My family?
2. What support services are available to help me live well with the disease, for as long as possible?

Study Offers Hint of Hope for Staving Off Dementia in Some People

Republished from: https://www.nytimes.com/2019/01/28/health/dementia-blood-pressure-cognitive-impairment.html

By Pam Belluck

People who received intensive treatment for hypertension were less likely to develop minor cognitive problems than those receiving standard treatment.

In dementia research, so many paths have led nowhere that any glimmer of optimism is noteworthy.

So some experts are heralding the results of a large new study, which found that people with hypertension who received intensive treatment to lower their blood pressure were less likely than those receiving standard blood pressure treatment to develop minor memory and thinking problems that often progress to dementia.

The study, published Monday in JAMA, is the first large, randomized clinical trial to find something that can help many older people reduce their risk of mild cognitive impairment — an early stage of faltering function and memory that is a frequent precursor to Alzheimer’s disease and other dementias.

The results apply only to those age 50 or older who have elevated blood pressure and who do not have diabetes or a history of stroke. But that’s a condition affecting a lot of people — more than 75 percent of people over 65 have hypertension, the study said. So millions might eventually benefit by reducing not only their risk of heart problems but of cognitive decline, too.

“It’s kind of remarkable that they found something,” said Dr. Kristine Yaffe, a professor of psychiatry and neurology at University of California San Francisco, who was not involved in the research. “I think it actually is very exciting because it tells us that by improving vascular health in a comprehensive way, we could actually have an effect on brain health.”

The research was part of a large cardiovascular study called Sprint, begun in 2010 and involving more than 9,000 racially and ethnically diverse people at 102 sites in the United States. The participants had hypertension, defined as a systolic blood pressure (the top number) from 130 to 180, without diabetes or a history of stroke.

These were people who could care for themselves, were able to walk and get themselves to doctors’ appointments, said the principal investigator, Dr. Jeff D. Williamson, chief of geriatric medicine and gerontology at Wake Forest School of Medicine.

The primary goal of the Sprint study was to see if people treated intensively enough that their blood pressure dropped below 120 would do better than people receiving standard treatment which brought their blood pressure just under 140. They did — so much so that in 2015, the trial was stopped because the intensively treated participants had significantly lower risk of cardiovascular events and death that it would have been unethical not to inform the standard group of the benefit of further lowering their blood pressure.

But the cognitive arm of the study, called Sprint Mind, continued to follow the participants for three more years even though they were no longer monitored for whether they continued with intensive blood pressure treatment. About 8,500 participants received at least one cognitive assessment.

The primary outcome researchers measured was whether patients developed “probable dementia.” Fewer patients did so in the group whose blood pressure was lowered to 120. But the difference — 149 people in the intensive-treatment group versus 176 people in the standard-treatment group — was not enough to be statistically significant.

But in the secondary outcome — developing mild cognitive impairment or MCI — results did show a statistically significant difference. In the intensive group, 287 people developed it, compared to 353 people in the standard group, giving the intensive treatment group a 19 percent lower risk of mild cognitive impairment, Dr. Williamson said.

Because dementia often develops over many years, Dr. Williamson said he believes that following the patients for longer would yield enough cases to definitively show whether intensive blood pressure treatment helps prevent dementia too. To find out, the Alzheimer’s Association said Monday it would fund two more years of the study.

“Sprint Mind 2.0 and the work leading up to it offers genuine, concrete hope,” Maria C. Carrillo, the association’s chief science officer, said in a statement. “MCI is a known risk factor for dementia, and everyone who experiences dementia passes through MCI. When you prevent new cases of MCI, you are preventing new cases of dementia.

Dr. Yaffe said the study had several limitations and left many questions unanswered. It’s unclear how it applies to people with diabetes or other conditions that often accompany high blood pressure. And she said she would like to see data on the participants older than 80, since some studies have suggested that in people that age, hypertension might protect against dementia.

The researchers did not specify which type of medication people took, although Dr. Williamson said they plan to analyze by type to see if any of the drugs produced a stronger cognitive benefit. Side effects of the intensive treatment stopped being monitored after the main trial ended, but Dr. Williamson said the biggest negative effect was dehydration.

Dr. Williamson said the trial has changed how he treats patients, offering those with blood pressure over 130 the intensive treatment. “I’ll tell them it will give you a 19 percent lower chance of developing early memory loss,” he said.

Dr. Yaffe is more cautious about changing her approach. “I don’t think we’re ready to roll it out,” she said. “It’s not like I’m going to see a patient and say ‘Oh my gosh your blood pressure is 140; we need to go to 120.’ We really need to understand much more about how this might differ by your age, by the side effects, by maybe what else you have.”

Still, she said, “I do think the take-home message is that blood pressure and other measures of vascular health have a role in cognitive health,” she said. “And nothing else has worked.”

Pam Belluck is a health and science writer. She was one of seven Times staffers awarded the 2015 Pulitzer Prize for International Reporting for coverage of the Ebola epidemic. She is the author of “Island Practice,” about a colorful and contrarian doctor on Nantucket. @PamBelluck

There’s Still Time to Go Back to Traditional Medicare or Change MA Plans

Republished from: https://www.medicareadvocacy.org/theres-still-time-to-go-back-to-traditional-medicare-or-change-ma-plans/

Annual Enrollment has ended, but the Medicare Advantage Open Enrollment Period, allowing plan changes or a return to traditional Medicare continues through March 31 – Make sure you are fully informed about the Medicare that is right for you.

When?
January 1–March 31

What Can I Do?
If you’re in a Medicare Advantage Plan (with or without drug coverage), you can switch to another Medicare Advantage Plan (with or without drug coverage).

You can disenroll from your Medicare Advantage Plan and return to Original Medicare. If you choose to do so, you’ll be able to join a Medicare Prescription Drug Plan.

If you enrolled in a Medicare Advantage Plan during your Initial Enrollment Period, you can change to another Medicare Advantage Plan (with or without drug coverage) or go back to Original Medicare (with or without drug coverage) within the first 3 months you have Medicare.

What Can't I Do?

1.       Switch from Original Medicare to a Medicare Advantage Plan.

2.       Join a Medicare Prescription Drug Plan if you're in Original Medicare.

3.       Switch from one Medicare Prescription Drug Plan to another if you're in Original Medicare.