Breaking News
May 25, 2018 - New cancer treatment approach targets specific sugar receptors
May 25, 2018 - Skin responsible for uptake of cancer-causing compounds during barbecuing than lungs
May 25, 2018 - Early-onset cannabis use linked to further drug abuse problems
May 25, 2018 - Covered California takes aim at hospital C-section rates
May 25, 2018 - FDA Approves Palynziq (pegvaliase-pqpz) for the Treatment of Adults with Phenylketonuria
May 25, 2018 - Arthritis Glossary
May 25, 2018 - Study links breast cancer to the body’s internal clock
May 25, 2018 - Strenuous exercise in teenage years may protect against height loss later in life
May 25, 2018 - FDA approves novel enzyme therapy for adults with rare and serious genetic disease
May 25, 2018 - New research project aims at developing effective interventions for kids with DLD
May 25, 2018 - Middlemen who save $$ on medicines — but maybe not for you
May 25, 2018 - Study sheds new light on sharp rise in fatal drug overdoses in recent years
May 25, 2018 - TNFi Exposure In Utero Does Not Up Serious Infection Risk
May 25, 2018 - Organization of cells in the inner ear enables the sense and sensitivity of hearing
May 25, 2018 - Yoga May Be Right Move Against Urinary Incontinence
May 25, 2018 - Drinking recommended amount of milk could protect obese children against metabolic syndrome
May 25, 2018 - New cytokine network can repair tissue damage in the intestine, study finds
May 25, 2018 - Lyme disease researcher dispels misconceptions about ticks and provides prevention tips
May 25, 2018 - Penn researchers find link between social media usage and underage drinking
May 25, 2018 - Unique nanotechnology method to simplify skin disease diagnosis
May 25, 2018 - Study reveals new protective mechanism for tumor cells in breast cancer
May 25, 2018 - FRAME Alternatives Laboratory chosen for major European liver research collaboration
May 25, 2018 - Study shows yogurt may dampen chronic inflammation linked to multiple diseases
May 25, 2018 - Invasive cancers that are born to be bad show detectable differences from harmless tumors
May 25, 2018 - Study identifies new mechanism involved in development of Lou Gehrig’s disease
May 25, 2018 - UAB professor receives award for malaria prevention study in pregnant women in Cameroon
May 25, 2018 - Study provides blueprint of how fruit flies can be used to screen potentially pathogenic human genes
May 25, 2018 - New drug-delivering nanoparticle could offer better way to treat brain tumors
May 25, 2018 - Kessler Foundation scientists compare two tests for assessing learning in individuals with MS
May 25, 2018 - Stroke Symptoms and Diagnosis (Beyond the Basics)
May 25, 2018 - Protein goes against the family to prevent cancer
May 25, 2018 - Drugmakers blamed for blocking generics have milked prices and cost U.S. billions
May 25, 2018 - Speakers announced for National Medicines Symposium 2018
May 25, 2018 - GSK Receives FDA Approval of Arnuity Ellipta for Asthma in Children From 5 Years of Age
May 25, 2018 - Pfizer settles kickback case related to copay assistance for $24m
May 25, 2018 - Nuclear pore functions are essential for T cell survival
May 25, 2018 - Study defines molecular basis to explain connection between mother’s nutrition and infant growth
May 24, 2018 - IHI hosts representatives to develop a national action plan for patient safety
May 24, 2018 - Zika detection breakthrough by University of Queensland
May 24, 2018 - FDA Alert: 95% Ethyl Alcohol Product by Ethanol Extraction: Recall
May 24, 2018 - New method allows scientists to study how HIV persists
May 24, 2018 - Study reveals rate of vertebral and non-vertebral fractures in children with leukemia
May 24, 2018 - Whey protein supplementation and physical activity aid women in improving body composition
May 24, 2018 - Seniors’ air pollution exposure linked to hospitalization for ARDS
May 24, 2018 - Home-based telehealth therapy program effective for stroke rehabilitation, shows study
May 24, 2018 - Addressing Parents’ HPV Vaccine Hesitancy Ups Vaccination Rates
May 24, 2018 - Opioid addiction treatment drug helps suppress HIV in former prisoners
May 24, 2018 - FDA warns against using teething remedies for babies
May 24, 2018 - Healthy lifestyle counseling program linked to reduced risk of developing cancers
May 24, 2018 - CU research sheds light on liver disease caused by intravenous nutrition
May 24, 2018 - Skin cream containing rapamycin reduces TSC-related facial tumors
May 24, 2018 - Suicide rates twice as high among black children finds new study
May 24, 2018 - Researchers find new method to treat severe asthma
May 24, 2018 - Scientists report new strategy for fighting bacteria
May 24, 2018 - South Asians living in the United States more likely to die of heart disease and stroke
May 24, 2018 - Health Tip: Why Get a Biopsy
May 24, 2018 - Metabolic Syndrome Prevalence by Race/Ethnicity and Sex in the United States, National Health and Nutrition Examination Survey, 1988–2012
May 24, 2018 - Motivation to move may start with being mindful
May 24, 2018 - Advanced genetics study of TB bacteria uncovers virulent ‘Beijing lineage’ strain among young adults
May 24, 2018 - Friends tend to have similar pain tolerance levels, study reveals
May 24, 2018 - International researchers succeed in stopping growth of mesothelioma in model animals
May 24, 2018 - Inactive people find high-intensity interval training to be as enjoyable as traditional exercise
May 24, 2018 - Now more of us can count on more time dodging the dementia bullet
May 24, 2018 - Scientists develop new test to predict woman’s risk of preterm birth
May 24, 2018 - Global healthcare access and quality improved from 2000-2016
May 24, 2018 - Virtual follow-up visits for hypertension care just as effective as in-person office visits
May 24, 2018 - New research reveals links between type 1 diabetes and mental health
May 24, 2018 - Antioxidant-enriched multivitamin may decrease respiratory illnesses in CF patients, finds study
May 24, 2018 - Antidepressant treatments increase risk of weight gain, study finds
May 24, 2018 - INSYS Therapeutics Confirms Outcome of FDA Advisory Committee Meeting on Buprenorphine Sublingual Spray
May 24, 2018 - Poor older adults with Medicaid insurance more likely to die after hospital discharge
May 24, 2018 - Early-life obesity linked to children’s lower perceptual reasoning and working memory scores
May 24, 2018 - Health and diagnostics to soon be digitalized with advent of AI
May 24, 2018 - USC researchers develop new portable device for early-stage malaria detection
May 24, 2018 - Psychologists show that depression accelerates brain aging
May 24, 2018 - Novel IR imaging offers rapid and reliable analysis of cancer tissues
May 24, 2018 - Tau mutations may serve as novel risk factor for cancer
May 24, 2018 - Sun Pharma Announces FDA Approval of Yonsa (abiraterone acetate) to Treat Metastatic Castration-Resistant Prostate Cancer
May 24, 2018 - Nurse dead in Congo as Ebola vaccination campaign starts
May 24, 2018 - Unique imaging technique identifies biomarkers of cellular damage done by diabetic retinopathy
Videos can clearly state your end-of-life wishes

Videos can clearly state your end-of-life wishes

image_pdfDownload PDFimage_print

For years, Wendy Forman, considered how to make her wishes known if she became horribly ill and couldn’t speak for herself.

She prepared a living will refusing cardiopulmonary resuscitation.

She assembled orders instructing medical personnel to refrain from putting in a feeding tube or placing her on mechanical ventilation.

She told her husband and her daughters “no lifesaving measures” under any circumstances if she were unconscious and incapacitated.

“I was terrified of losing control,” this 70-year-old Philadelphia therapist said.

Then, earlier this year, Forman heard of a Pennsylvania physician who was helping people prepare “video advance directives” — videotaped statements expressing their preferences for end-of-life care.

“I was like ‘Oh my God, it’s like someone was reading my diary — this is exactly what I want,'” she recalled.

Only a few U.S. organizations offer people the chance to create video testimonials, which are meant to supplement and expand upon written living wills and Physician Orders for Life Sustaining Treatment (POLST), now available in 26 states. Do-it-yourself videos are also a convenient option.

One organization doing pioneering work in this field is the Institute on HealthCare Directives, founded by Dr. Ferdinando Mirarchi, the Pennsylvania physician whose work Forman heard about. Others include MyDirectives, a Texas company that helps people create digital advance directives, including personal video and audio statements; Life Messages Media of Wisconsin, which also creates video memoirs and ethical wills, a way to share your values with your family; and In My Own Words, launched by a geriatric psychologist in California.

These organizations hope the videos will help physicians and families interpret and follow written advance directives. About one-third of adults have such end-of-life documents.

“It can give everyone confidence that Mom was competent and knew what she was signing and that no one tricked her by sticking a document in front of her and asking her to sign,” said Thaddeus Pope, director of the Health Law Institute at Mitchell Hamline School of Law in St. Paul, Minn.

Similarly, videos have the potential to ease some of the emotional angst that surrounds end-of-life decision-making. “A family gets to hear Mom saying, in her own words, what she wants, which can be profoundly reassuring,” said Dr. Monica Murphy, medical director of advance-care planning and end-of-life education for Huntsville Hospital System in Alabama.

Formats vary. The Institute on Healthcare Directives’ videos are carefully scripted and usually last 45 to 90 seconds. The goal is to convey essential information to physicians making crucial decisions (perform manual chest compressions? insert a breathing tube?) in time-pressed emergency medical situations.

Mirarchi helps draft scripts after taking a careful medical history, explaining various types of medical situations that might arise, and discussing clients’ goals and values in considerable depth. The cost: a one-time fee of $350, which covers 10 years of follow-up consultations and maintenance, or a setup fee of $50 to $100 accompanied by an annual fee of $35 to $50.

After consulting with the doctor, Forman realized her “do nothing” instructions could prevent her from being treated for medical crises that she might recover from. Now, her video states that if someone witnesses her having heart attack and she can receive medical attention within 15 minutes, resuscitation should be tried.

“I came to see that in my zeal to have my wishes known and respected, I was going to an extreme that didn’t really make much sense,” she said.

Easy accessibility to the videos is essential but may not be practical, yet. The institute houses videos on a server; they can be called up on digital devices via QR codes, or hyperlinked bar codes, that are printed on cards given to clients. (Forman carries hers in her wallet, next to her insurance card.) Passwords are discouraged because these might be a barrier in an emergency. Still, medical personnel aren’t accustomed to searching for cards of this sort.

Videos by MyDirectives clients also tend to be short — between 15 seconds and a minute. The service is free to consumers; the company’s business model relies on partnerships with health care organizations. “The consumer deserves to have their voice heard in electronic health records” that these organizations maintain, said Jeff Zucker, MyDirectives chief executive officer, who hopes that health systems will eventually embed patient videos in those records.

What weight video testimonials will carry in legal conflicts has yet to be determined. Only Maryland allows advance directives to be conveyed in a video format, while New Jersey explicitly recognizes video or audiotapes as supplements to written documents, according to the American Bar Association’s Commission on Law and Aging.

Multimedia advance directives likely will be taken into account in end-of-life disputes, just as a daughter’s statement that “Mom told me this is what she wanted last week” is given consideration, Pope said.

“Since the only thing that constitutes clear and convincing evidence under the law is the written advanced directive, make sure your video is consistent with what’s expressed in these documents,” he advised.

Physicians seem receptive to the videos. According to a study published this year, doctors were more likely to agree about recommended treatments for patients in difficult circumstances after viewing patient videos, as well as evaluating written advance directives.

“Doctors always question whether we’re doing the right thing when it’s just the paper document,” Mirarchi explained. “When you can see a patient expressing what their true intended wishes are, in their own voice, looking into a camera, that’s a very powerful tool.”

For their part, patients seem comfortable speaking before a camera, according to unpublished research conducted by Dr. Angelo Volandes, an internal medicine doctor at Massachusetts General Hospital and a pioneer in creating videos that help patients understand the pros and cons of end-of-life interventions.

His group asked heart failure patients to describe what was important to them and what they’d want doctors to know if they weren’t able to speak for themselves. “Were people comfortable doing this? Heck, yeah — they were very comfortable and far more articulate than we give them credit for,” Volandes said.

He imagines primary care doctors bringing older patients into their offices for consultations about advance-care planning, now paid for by Medicare, and turning on a cellphone or a desktop camera. Ideally, family members would be present or Skyped in so they could be part of a recorded conversation.

You don’t have to wait for this kind of service to become widely available: You can make a video of this kind now, store it on your cellphone or tablet, and share it with your family members and doctors.

Even though he’s an experienced TV producer, Michael Gallagher, 54, chose to get professional assistance because of his complicated medical situation. Almost 30 years ago, Gallagher’s jaw was broken after two football players crashed into him as he was filming a game from the sidelines — a problem that required dozens of surgeries. Today, he struggles with chronic kidney disease as well as the aftermath of a 2005 car accident that broke his back and fractured his skull.

“My wish is that if I am in a situation where I’ve collapsed and a medical professional can get to work on me then and there, give me a shot. Do what you have to resuscitate me and intubate me through my nose, as opposed to my mouth,” said Gallagher, explaining the wishes that he’s recorded in a video prepared by Mirarchi’s company. “But if I’ve been found the morning after, cold and unaware, even if there’s some brain function, don’t try to bring me back.”

KHN’s coverage of these topics is supported by John A. Hartford Foundation, Gordon and Betty Moore Foundation and The SCAN Foundation


Kaiser Health NewsThis article was reprinted from khn.org with permission from the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonpartisan health care policy research organization unaffiliated with Kaiser Permanente.

Tagged with:

About author

Related Articles