Wednesday, July 17, 2019

Reduce the Risk of Isolation with Resources and Support from Aging Life Care Professionals®

Aging Life Care Professionals can help coordinate resources and services to promote social engagement.


As we age, there may be barriers for elders that prohibit social activity and engagement. Spouses and friends pass away, mobility becomes more difficult, and driving is no longer a possibility. However, the loss of interaction with others can result in poorer health outcomes. According to the NIH, social isolation can result in high blood pressure, heart disease, obesity, a weakened immune system, anxiety, depression, cognitive decline, Alzheimer’s disease, and even death.

Some signs that an older adult is at risk of social isolation include:
  • Living alone
  • Family living at a distance
  • Poor hearing and/or vision
  • Memory loss or other cognitive problems
  • Difficulty getting around (trouble walking, unable to drive or access transportation)
  • Significant life changes such as the recent loss of a partner or moving to a new home
Fortunately, social isolation does not have to be an inevitable part of aging. Some ways to make sure that older adults stay engaged are:
  • Visiting children, grandchildren, friends, and neighbors
  • Participating in faith activities, services, and social events
  • Signing up for trips sponsored by local community centers
  • Volunteering at schools, hospitals, or local non-profit organizations
  • Taking classes or attending lectures at local libraries, schools, and other community venues
  • Joining a book group or social club

If you or a loved one are feeling isolated, but unsure where to start, an Aging Life Care Professional can help. Also known as geriatric care managers, these experts can help older adults connect to different resources in their area, from organizations that host events to transportation. Many of them provide check-ins to the older adult at home, providing an opportunity for conversation, connection, and support.

If your family is in need of care management services, you can find an Aging Life Care Professional near you at

ABOUT the Aging Life Care Association ® (ALCA): ALCA (formerly known as the National Association of Professional Geriatric Care Managers) was formed in 1985 to advance dignified care for older adults and their families in the United States. Aging Life Care Professionals® have extensive training and experience working with older adults, people with disabilities, and families who need assistance with caregiving issues. They assist families in the search for a suitable nursing home placement or extended care if the need occurs. The practice of Aging Life Care™ and the role of care providers have captured a national spotlight, as generations of Baby Boomers age in the United States and abroad. For more information or to access a nationwide directory of Aging Life Care Professionals, please visit

Monday, July 15, 2019

Alzheimer’s and Dementia Treatments and Research

Republished from:

By Alzheimer’s Association

The more you know about Alzheimer's medications, the better prepared you will be to discuss them with your physician, make informed choices about your treatment plan, and effectively cope with symptoms of the disease.

While there is no cure, prevention or treatment to slow the progression of Alzheimer's disease, there are five prescription medications approved by the U.S. Food and Drug Administration (FDA) to treat its symptoms.

Treatments-at-a-glance: Medication, Brand Name, Approved, Possible Side Effects
All stages                           
Nausea, vomiting, loss of appetite and increased frequency of bowel movements.

Mild to moderate          
Nausea, vomiting, loss of appetite and increased frequency of bowel movements.

Moderate to severe     
Headache, constipation, confusion and dizziness.

Mild to moderate          
Nausea, vomiting, loss of appetite and increased frequency of bowel movements.

Memantine + Donepezil                       
Moderate to severe       
Nausea, vomiting, loss of appetite, increased frequency of bowel movements, headache,
constipation, confusion and dizziness.

The first three drugs are called cholinesterase inhibitors. These drugs prevent the breakdown of a chemical messenger in the brain important for learning and memory. These medications treat symptoms related to memory, thinking, language, judgment and other thought processes.

The fourth drug, memantine, regulates the activity of a different chemical messenger in the brain that is also important for learning and memory. Both types of drugs help manage symptoms, but work in different ways.

Tips from people living with Alzheimer's: Medication safety
  1. Keep a calendar and check off each dose as it's taken.
  2. Set up a pill box each night for use the next day.
  3. Set the alarm on your cell phone or schedule dosing around meal times.
Before beginning a new medication, make sure your physician, pharmacist and care team are aware of any over-the-counter and alternative remedies you are taking to prevent drug interactions and unwanted side effects. Be sure to discuss all medications you take with your doctor to understand why they were prescribed and how to take them.

Treating sleep changes
Alzheimer's or another dementia may change your sleep patterns. You may have difficulty sleeping, take daytime naps, and/or experience other shifts in your sleep pattern. Researchers are not sure why these sleep changes occur. There are non-drug treatments and medications that may help improve your sleep.

Alternative treatments
There are remedies, supplements and “medical foods” that are often referred to as alternative treatments. Alternative treatments are not regulated and do not need to adhere to the same standards as FDA-approved treatments. Claims about their safety and effectiveness are based largely on testimonials, tradition or a small body of scientific research.

If you are considering taking an alternative treatment, talk openly with your physician. It is important to be aware of any risks so you can make an informed decision. Even if advertised as “natural,” alternative treatments can involve potentially powerful substances that have not met the FDA standards for effectiveness or safety, and some alternative medicines can cause unintended reactions when taken with prescription medications.

Here is a list of questions to ask when considering an alternative treatment or supplement:

Did the FDA test the product? If so, what were the results?
The FDA may have tested a product, but found it to be ineffective for the intended purpose. The company may still release the product as a medical food, either with or without changes.
Has any non-FDA testing been done? If so, what were the results?
Does the testing entity have a vested interest in the outcomes? For example, was testing done only by the company developing the product? If so, the results may not be entirely reliable.
Does the developer of the product or the person recommending it to you have a potential financial gain from the use of the medication?
If so, use extreme caution. Check with your care team to see if they have any questions or concerns with your plan to use it.
Is the product compatible with the other medications you are taking or with your diagnoses?
Be sure to check with your doctor or pharmacist to find out whether the product could cause negative outcomes given your diagnoses and any medications you are taking.
Does use of the product have any known risks?
Ask your doctor or the pharmacist if the product has any known side effects.

Research into tomorrow's treatments
Researchers are conducting studies to find new interventions and treatments that can prevent Alzheimer's, diagnose the disease earlier, slow its progression or stop it in its tracks.

Many drugs in development aim to interrupt the disease process itself by impacting one or more of the brain changes associated with Alzheimer’s. These changes offer potential "targets" for new drugs to slow or stop the progress of the disease. These promising targets include beta-amyloid and tau protein (hallmarks of Alzheimer's brain abnormality) and inflammation.

Researchers believe successful treatment will eventually involve a combination of medications aimed at several targets, similar to current treatments for many cancers and AIDS.

Participate in clinical trials
Recruiting and retaining trial participants is now the greatest obstacle, other than funding, to developing the next generation of Alzheimer's treatments. You can help change this by participating in a clinical research study.

To find a clinical trial, use Alzheimer's Association TrialMatch® or call 800.272.3900 (press 1 for clinical trials).

TrialMatch is a free, easy-to-use clinical studies matching service that connects individuals with Alzheimer's or another dementia, caregivers, healthy volunteers and physicians with current studies.

Monday, July 1, 2019

Deadly Falls in Older Americans Are Rising. Here’s How to Prevent Them.

Republished from:

The rate of deaths after falls is rising for people over 75, a new study shows. But falls are avoidable for most seniors. We have some tips.

By Katie Hafner
June 4, 2019

As the population ages, the number of older Americans who die following a fall is rising. A study published Tuesday in the medical journal JAMA found that for people over 75, the rate of mortality from falls more than doubled from 2000 to 2016.

Researchers analyzed information obtained from death certificates maintained by the federal government’s National Center for Health Statistics. In 2016, the rate of death from falls for people 75 and older was 111 per 100,000 people, they found. In 2000, that rate was 52 per 100,000 people.

Elizabeth Burns, a health scientist at the Centers for Disease Control and Prevention, who was an author of the study, said the reason for the increase was unclear.

“The most likely reason is that people are living longer with conditions that in the past they might have died from,” she said. In addition, she continued, older adults are on medications that increase their risk of falling. Women are slightly more likely to fall than men, but men are slightly more likely to die as a result of a fall.

“The take-home message is that falls kill,” said Dr. Lewis Lipsitz, a professor of medicine at Harvard Medical School and director of the Marcus Institute for Aging Research at Hebrew SeniorLife, a housing, research and health care organization in the Boston area. He was not involved in the study.

Although the trend is disturbing, falls needn’t be an inevitable part of aging, and they are preventable.

“The biggest risk factor for falls that can’t be changed is your age,” said Dr. Elizabeth Eckstrom, a geriatrician at Oregon Health & Science University. “Most of the other risks can be mitigated.”

Here are some measures you can take to help prevent a fall.


Dr. Lipsitz emphasized the importance of incorporating exercise into a daily routine. He suggested at least 20 minutes a day, combining aerobic and anaerobic exercise. Weight lifting, particularly for strengthening the legs, is a good idea, he said.

Tai chi, the Chinese martial art, appears to be an effective way to improve balance. It involves very slow, purposeful movements in coordination with breathing and muscle activity.

A study published last year found that among adults over 70 who practiced tai chi twice a week for an hour, the incidence of falls was reduced by 58 percent. Dr. Eckstrom, one of the study’s authors, said the participants in the study did tai chi twice a week for an hour over a six-month period.

“When you fall, your body has not figured out how to stay posturally stable, and tai chi helps with that,” Dr. Eckstrom said. “With a lot of the classic tai chi moves, you make a fairly large step out, or to the side. Or you lean forward, with your trunk. You’re putting yourself in a position of almost falling.” All of this, she added, trains the body to remain stable when put in an off-kilter position.

The CDC maintains a compendium of recommended exercises that includes tai chi.

If a doctor prescribes a walker, use it. “It will allow you to be more independent for longer,” Dr. Elizabeth Eckstrom, a geriatrician, said.

Mind your meds

Medications, especially those that help with sleep, can compromise balance. Dr. Eckstrom said benzodiazepines such as Valium and Xanax are especially bad.

“Metabolism slows in older adults, so toxicity to benzos builds up, which can cause dizziness,” she said.

The same goes for non-benzodiazepines such as Ambien. Sedating antihistamines such as Benadryl and Advil PM are also bad for balance.

“If everybody got off the sleeping pills, it would help a lot,” Dr. Eckstrom said. As an alternative, she recommended melatonin to her patients, which she called a safe and effective sleep aid.


Eyesight is a crucial component when it comes to falls. Avoid bifocal or progressive lenses when walking outside. “If you’re wearing bifocals and stepping down off a curb, that changes your depth perception,” said Ms. Burns, who recommends a single-focus lens for walking outside.

Then there’s footwear. Fashion, said Dr. Lipsitz, needs to take a back seat to function. “No high heels,” he said. Dr. Eckstrom agreed.

Anything the foot slides into is a terrible idea, she said: “Avoid cute slide-in sandals.”

All shoes should have a back, and a sole with good tread. Slippers, too, can be bad. “Slippers make you slip,” said Dr. Eckstrom.

Are you too proud to use a cane or walker? Get over it. “If your doctor has recommended a walker, use it,” Dr. Eckstrom said. “It will allow you to be more independent for longer.”

Eliminate tripping hazards

The accumulated clutter of a lifetime can be lethal. Get rid of small scatter rugs in your home, and eliminate extension cords that stretch across a floor.

Pets can also be a hazard. “It’s so easy to trip over your pet,” said Dr. Eckstrom.

Take a closer look at the height of thresholds between rooms; it takes just a fraction of an inch to cause a trip. Keep a light on at night for visual access to the bathroom.

Early and often to the bathroom

Hydration is a good way to fight dizziness. Drink plenty of water throughout the day, said Dorothy Baker, a senior research scientist in geriatrics at the Yale School of Medicine.

“Don’t wait until you’re desperate to go to the bathroom and need to rush,” Dr. Baker said. There’s a bonus to frequent bathroom trips, she added. “Doing that sit-to-stand is really good exercise and good for balance. Do a few extras while you’re there.”

Saturday, June 15, 2019

When the Care Is as Burdensome as the Condition

Some doctors are rethinking the treatment of chronic conditions

By Edie Grossfield
Health and Caregiving Editor
May 24, 2019

(Editor’s note: This story is part of a series for The John A. Hartford Foundation.)

Harold Peterson’s* cardiologist prescribes medications for his heart disease. His primary care physician prescribes medications for his high blood pressure and also determined that his hip pain needed to be addressed. He referred Peterson to an orthopedist, who recommended surgery.

Peterson, who is in his 80s, lives with a variety of chronic conditions, and he’s far from alone. One in four Americans has multiple chronic conditions — ones that last at least a year and require ongoing medical attention, limit activities or both. The already high ratio of Americans with more than one chronic condition jumps to three out of four people ages 65 and older. Some of the most common chronic conditions: high blood pressure, arthritis and diabetes.

Someone who deals with chronic conditions is typically treated by a variety of specialists, as Peterson is. Each doctor runs tests and prescribes different medications and self-care homework. It’s not long before a person can feel overwhelmed and overburdened by his or her long list of appointments and care routines, says Dr. Mary Tinetti, an internist and chief of geriatrics at Yale School of Medicine.

“People with multiple chronic conditions will often begin to skip some of their health tasks due to what’s called ‘burden of treatment.'”

“Once you get three, four or five and six diseases, several things happen: Number one, almost guaranteed, trying to get one of those diseases under control is going to make one of the other diseases worse,” Tinetti says. “Number two: The more we ask people to do, the more overwhelmed they get and the less they are likely to do.”

People with multiple chronic conditions will often begin to skip some of their health tasks due to what’s called “burden of treatment,” says Dr. Victor Montori, an endocrinologist and professor of medicine at the Mayo Clinic in Rochester, Minn.

Lessening Burden of Treatment
In an attempt to lessen that burden, Tinetti leads an initiative called Patient Priorities Care. This model empowers people to express their health care priorities — things like function, longevity, social activities or symptom relief — and work with their physicians to develop treatment plans that focus on those goals and let them live the lives they desire.

Patient Priorities Care complements a health care approach introduced by Montori and his colleagues about a decade ago called Minimally Disruptive Medicine. The basis for the approach is the same as Patient Priorities Care: to lessen the burden of treatment by asking patients about their health care goals.

But Montori says Minimally Disruptive Medicine lacked an effective process for identifying what really mattered to patients in their present-day lives.

“It’s very much like when you get hired for a job and somebody asks you, ‘How do you see yourself in the next five years?’ And then you make stuff up, because five years later you’re doing something completely different from what you thought you’d be doing,” Montori says, adding that the same thing happens when you ask patients a general question like, “What are your goals for care?”

“Either they respond with quite generic statements that are not very helpful like, ‘Oh, I would like to live longer and feel better,’ or they become exercises in fiction: ‘I would like to be able to play the piano,'” Montori says.

Patient Priorities Care’s questions are designed to identify what patients want to be able to do in their everyday lives. For example: “What brings you the most enjoyment or pleasure in your life?” and “When taking care of yourself, what is most important to you now?”

Identifying What Really Matters
The Patient Priorities Care approach worked well for Peterson as a patient at ProHealth Physicians Group in Bristol, Conn., where a two-year pilot of the initiative wrapped up last year.

Peterson enrolled in that study and shared his feelings about his health and treatment. During the process, his doctors learned that he didn’t actually want surgery for his hip, despite the pain he suffered and the difficulty he had walking.

Much more troubling to him were the dizziness and fatigue he experienced every day because of his heart and blood pressure pills. Those side effects prevented him from playing poker with his friends — something he loves to do once or twice a week.

Peterson’s primary care doctor and cardiologist worked with him to adjust his medication regimen so he’d no longer feel dizzy and tired. Once again, he was able to enjoy the social time with his friends playing poker.

Patient Priorities Care doesn’t come without trade-offs, though. For example, because Peterson has cut down on some of his medications, there’s a chance he might not live as long as he would if he had kept taking them. But today, he feels well enough to enjoy the things he wants to do in life — and that’s what matters to him.

Less Unwanted Care
The pilot project at ProHealth (which was funded in part by The John A. Hartford Foundation, a Next Avenue funder) involved about 350 patients. It compared the Patient Priorities Care group with ProHealth patients receiving standard primary care.

It found that those involved in the study felt less burdened by their treatment because there was less “unwanted care,” including medications, diagnostic testing, procedures and self-management tasks that patients either didn’t believe helped them or thought was just too much.

“And that’s really important to know,” Tinetti says, “because one of the things we’re learning more and more is that people with multiple chronic conditions are feeling almost as burdened by their care as they are by the chronic conditions they have.”

Pushback From Physicians
Tinetti and her colleagues are realizing it’s rare to find a physician or clinic that works this way, however. So, they’re working on ways to spread the concept to more health care providers and organizations. The team also is developing self-directed materials that help patients and their family caregivers work through the process of identifying health care priorities so they can communicate these to their physicians.

Tinetti has run into some pushback against Patient Priorities Care from physicians who say they already are stretched too far in terms of the number of patients they are expected to see per day and the documentation tasks they are expected to perform.

In response, she refers to the pilot study at ProHealth which found that Patient Priorities Care doesn’t add much time to doctor visits. After patients discussed their priorities with a nurse or case manager, their first couple of visits with physicians were usually about 10 minutes longer. Visits beyond that returned to the normal length of time.

The Patient Priorities Care process simplifies caring for people with multiple chronic conditions because it narrows the focus to what is troubling them the most, Tinetti says.

Physicians point out that they are required to follow specific disease treatment guidelines that the Centers for Medicare & Medicaid Services requires health care organizations to meet for reimbursement. Many physicians’ performance reviews also are based, in part, on their patients’ adherence to treatment guidelines.

Many of these guidelines have age limits and don’t apply to people over the age of 75 or 80. However, if a guideline does apply but a physician feels it is not in the best interest of a patient, the physician only needs to document his or her reason for not following it and that the patient was involved in the decision-making, Tinetti says.

Montori says many guidelines, meant to ensure high-quality and efficient care based on the results of clinical trials, often interfere with what actually is best for an individual patient. He says the guidelines recommend care for “patients like this” rather than “this patient.”

He’s written a book that addresses the idea and has spoken on it at health care conferences, including the 2018 Lown Institute Conference in Washington, D.C. and the 2019 Cleveland Clinic’s Patient Experience Summit.

With regard to setting personal health goals, as Patient Priorities Care and Minimally Disruptive Medicine try to do, Montori says the discussion about health care in the U.S. needs to move away from treating people like they are all the same to “treating each person and responding to each person’s situation in a careful and kind way that is maximally supportive and minimally disruptive.”

It’s an approach that’s good for all patients, not only those with multiple chronic conditions, Montori says.

Edie has been a journalist for more than 20 years, reporting and editing for newspapers and magazines. She also worked in communications for a large health care organization. She holds a bachelor’s degree in communications and media and a master’s degree in journalism, both from the University of Wisconsin in Madison. Reach her by email at

Saturday, June 1, 2019

Making It Easier to Talk about Advance Care Planning

Republished from:

By Scott Bane

I have family members who believe that if they talk about end-of-life issues, they will hasten death. They resolutely back-up their beliefs with silence and inaction. They are not alone in this. As a general rule, most of us don’t like to think or talk about the end of our lives. Isn’t this always the way? Even if we know something is good for us or important, if it’s hard or will make us uncomfortable, we put it off.

But as a matter of public policy, collectively we as a society have decided that it’s a good thing to consider and plan for serious illness or death. As a result, all states have some form of advance care planning codified into law. Advance care planning helps people specify the kind of care they would like – or not like – in the event they are seriously ill or dying. Effective January 1, 2016, Medicare began paying medical professionals if a patient wished to have an advance care planning conversation.

Technically, advance care planning need only take place between patients, their families, and medical professionals. But since drafting legally-binding paperwork is involved, lawyers have historically stood at the threshold to this planning process.  Ideally, a conversation between a lawyer and his or her client will focus on the patient’s values, goals, and wishes.  The lawyer then documents these values and goals by creating a health care proxy, living will, and/or health care power of attorney.

Advance care planning is always important, but it becomes even more important as one ages or is living with chronic illness. Still, only about a third of adults have completed advance care planning.  Not surprisingly, these numbers rise for older adults. Several studies put completion of advance care planning by adults age 65 and older at roughly 50 percent.

To help change this, The John A. Hartford Foundation made a grant to the American Bar Association – Commission on Law and Aging. In 2018, the ABA Commission on Law and Aging sponsored an expert summit at which legal and medical experts drafted a practical, step-by-step guide for lawyers to help them guide their clients through advance care planning. The resulting document Advance Directives:  Counseling Guide for Lawyers was released on October 17, 2018. The President of The John A. Hartford Foundation Terry Fulmer later discussed the guide in an article published by Next Avenue.

Now comes the hard part of actually getting the Guide into the hands of lawyers who will use it. The ABA Commission on Law and Aging and its partner organizations on this project, such as the American Academy of Hospice and Palliative Medicine, are reaching out to legal and medical publications, as well as radio and social media to promote the Guide. We know that it takes sustained effort over a long time in order to actually change practice.  To that end, the ABA Commission on Law and Aging also plans to distribute the guide to state and local bar associations, as well as to medical and legal partnerships around the country.

Recognizing the critical role the legal education plays in shaping practice, the ABA Commission on Law and Aging will also put the guide into the hands of legal educators to use in elder law clinics and in continuing legal education courses. It’s hard to change practice, but given the reach and prestige of the ABA Commission on Law and Aging, its partner organizations, and its allies including members of the American Society on Aging, this project has great likelihood to shift practice for the better regarding advance directives for older adults.

Scott Bane, JD, MPA, is a recent graduate of CUNY School of Law. He joined the staff of The John A. Hartford Foundation in New York City as a program officer in September 2018. Visit for more information.

Other Advanced Care Planning Resources from Advance Directives: Counseling Guide for Lawyers:

Wednesday, May 15, 2019

The Ethical Will: Life Is About More Than Your Possessions

Reprinted from:

Have you considered how to pass on your non-material assets?

By Deborah Quilter
April 11, 2019

When people find out Debby Mycroft helps people write ethical wills, she always gets a predictable response: The Lament.

“They say, ‘Oh, I wish I had a letter from my dad or grandmother or great aunt,’ whoever that person was. I have not come across a single person who has not wanted a letter from that special person,” says Mycroft, founder of Memories Worth Telling.

Unlike legal wills, ethical wills — also known as legacy letters — are not written by lawyers, but by you. They can include life lessons, values, blessings and hopes for the future, apologies to those you fear you may have hurt or gratitude to those you think you have not thanked enough. Traditionally, they were letters written by parents to children, to be read after death.

People who do not have children address them to friends or groups. One of Mycroft’s clients was placed in child protective services when she was quite young because her parents were addicts. “She had a rough upbringing. She intentionally decided not to have children herself. But she wanted to write an ethical will to other foster kids to let them know [they] can survive this,” Mycroft explains.

Why Write an Ethical Will?

Think that your life isn’t important enough to warrant an ethical will? Mycroft disagrees, saying, “You don’t have to be a war hero or a Nobel Peace Prize winner for your story to have value. When people accept awards at the Olympics, they thank the people who had an impact on their life, like Mom or Dad, who was always there to take them to training.”

But there’s an even more important reason you might want to consider a legacy letter. According to Barry K. Baines, author of Ethical Wills: Putting Your Values on Paper, such documents can bring enormous peace of mind.

Baines recalls one dying patient who was bereft because he felt there would be no trace of him when he left. “The first wave would wash away his footprints. That sense of hopelessness and loss was overwhelming,” says Baines. The man rated his suffering at 10 out of 10; after he wrote his ethical will, his suffering reduced to zero.

Don’t wait until you are on your deathbed to do this, Baines warns. As soon as you articulate your values, suddenly you start to live your life more intentionally. Especially if you share it.

Ethical Will: Telling Your Own Story
If you don’t feel capable of writing your legacy letter yourself, you can use an online template, take a workshop, read a book about it or work with a professional writer.

But don’t judge your skills harshly. Baines finds that whether people are educated or not or if their letters are simple or complex, they always have a certain elegance because of the truth they contain. “When the families get one, they just glow,” Baines says, adding, “This is a unique gift that only you can give.”

When you write your letter, don’t just say, “My core values are consideration, gratitude, kindness, simplicity,” advises Mycroft. Tell a story about how you’ve lived these values.

In her own legacy letter, Mycroft told her kids about a temp job she had as a teen. She appeared nicely dressed in a skirt, blouse and heels. When she walked in, the employers gave her a funny look and asked, “Why do you think you are here?”

She explained the agency had sent her out for secretarial work. Then her employers handed her a hard hat and steel-toed shoes. “That’s when I look at them quizzically.”

Turns out they were a plastic-bag manufacturer and she was supposed to sort through damaged goods to salvage the ones that could be sold.

“I was so angry that that agency had sent me out on that job. It was hot and humid in Virginia. I was fuming,” Mycroft says. “When I got home, my parents started grilling me. They said, ‘Did you agree on this job?’” And Mycroft confirmed that she did.

They asked what the contract said. Mycroft replied that the contract was pretty clear. Did she sign the contract, her parents wanted to know?

“Yes, but,” she says she told them. “And my parents said, ‘You signed it; you’re committed to it.’”

Mycroft stuck with the job as promised. “That was my first lesson in integrity, perseverance and diligence,” she recalls. She did what she said she would do. As a postscript, she got fantastic jobs from the agency over the rest of the summer. They knew they could count on her.

What Goes Into the Legacy Letter and What Stays Out
Ethical wills are often likened to letters from the heart, so perhaps the best advice is to literally write a love letter.

Love letters don’t recriminate. They don’t judge. They don’t scold. A love letter is there to show how much someone matters to you.

Criticisms and judgments should be left out, advises Mycroft. It’s okay to include regrets and family secrets, even if they hurt. If worded properly, these could bring the family to a place of acceptance and understanding.

She notes, “Sometimes when those things are hidden for so long it causes a lot of resentment — as in] why didn’t they tell me I was adopted? I wish I had known.”

“Definitely avoid manipulation,” Mycroft advises. “Legacy letters are beautiful expressions of love and encouragement, telling other people what is so fantastic about them. I do not think they should be hands reaching up from the grave slapping you or saying, ‘I told you so.’”

Think about how your letter might be received. Baines worked with a woman who had a very hard life. “Every part of her ethical will was blame and guilt-tripping,” he recalls. While some people can turn around a bad experience and use it is an example of what not to do, this woman could not.

“It almost seemed like she was purposely trying to hurt people,” Baines says. But eventually she realized that and gave up, sparing her family the hurt she would cause them.

Get a Second Opinion
Baines believes writers should show their legacy letter to a trusted friend before passing it on, to avoid inadvertent errors. Your reader might say, “You mentioned your two children, but you only write about one and not the other.” That could be extremely hurtful.

Baines also urges people to share the letters while they’re living. It might be painful, but there’s still potentially an opportunity to mend wounds. After you die, there’s no recourse at all.

What About Videos or Selfie Videos?
Some people make videos or selfies of their ethical wills, but keep in mind that technologies can become outmoded.

Mycroft gave both her children the letter and a video of her reading the letter so they not only have her words, but can also hear her voice.

“I’ve heard of people saving voicemails of people who have passed on,” she says. “Can you imagine saving a voicemail and all it says is ‘Susie, are you there? Can you pick up? Hello?’ If you’re willing to save that message just to hear their voice, how much more powerful would it be to hear your voice reading that letter?”

The Time Is Now
The time to write your spiritual legacy is now. Mycroft provides a case in point about her mother, who knew the family lore and lineage.

“I gave her one of these fill-in-the-blank family history books because I wanted to make sure it was preserved,” says Mycroft. “Five years later, when she had passed away and I went to clean out her office, I found the book. It was completely empty.”

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.

Wednesday, May 1, 2019

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

Republished from:

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.