The Growing Market Of Online Storage

The Growing Market Of Online Storage

Posted on Thursday, October 2nd, 2014 at 9:21 am by lifemediamatters

Courtesy WikiMedia Commons

Courtesy WikiMedia Commons

The digital document storage market is becoming more crowded, as another in a long series of end of life planning services targeting a generation of tech-savvy baby boomers has emerged.

Estate Assist, founded by Woodrow Levin, allows subscribers to upload and store their digital accounts, important legal documents, medical orders and family pictures for online and offline access. Users also have the ability to designate trusted recipients of their information in case of incapacity or death.

Levin, 35, was inspired to create Estate Assist a decade ago, after watching his father struggle to find paperwork after the death of his grandmother.

“I decided there had to be a better way for all of us to organize our assets. Then it occurred to me that it’s not just ‘end of life critical’ to have fast access to key information— it’s day-to-day critical for all of us, at any age, to have one safe place to store our assets and important documents,” Levin wrote in a statement to Life Matters Media.

Estate Assist LogoThe service, which costs about $5 a month, is designed to give subscribers peace-of-mind that loved ones will be able to quickly claim and retrieve physical and intellectual properties after users’ death. States and federal agencies hold more than $58 billion in unclaimed cash and benefits, according to the National Association of Unclaimed Property Administrators (NAUPA).

Users have access to their information through any Internet-enabled device. Intuit, Inc automated Estate Assist’s account intake processes.

“We are trying to give people access to their documents anywhere, from any device and from any place,” Levin said. “It’s your data. You choose when you want to share it and who you want to share it with.”

A crowded field

Estate Assist is just one of many online document storage vaults aiming to help adults and families prepare for the end of life. As millions of baby boomers age, life expectancy increases and technologies evolve, several start-ups are attempting to capitalize on advance health care planning and a societal shift from paper to digital storage.

Steve Byrne, co-founder of Chicago-based Final Roadmap, a “virtual vault” for storing important documents, said Estate Assist should focus on helping users identify key documents to complete, a service Final Roadmap offers.

“We guide our members as to what documents they should include, we invite them to be organized and show them how,” Byrne added. Other notable services include Everplans, CareTree and Passare.

Ronette McCarthy, legal counsel to Elements, the cremation company, and end of life care advocate, said users should investigate online storage vaults before investing time and resources.

“What is the longevity of companies like this? Who actually owns this information, especially when the principal passes? Some companies have planned for the future, others have not,” McCarthy said.

McCarthy said she has yet to find an online storage site she would use or recommend, partly because she still stores her families’ important legal documents at home.

She said she is impressed by Estate Assist’s promise of “Estate Guard Security,” the 256 bit advanced encryption standard (AES)– the technology banks use to help ensure financial data and documents are stored and transferred safely– and their $1 million guarantee in case of theft.

“But Estate Assist seems to be geared more towards financial and actual digital assists and not as much complete end of life planning,” she added.

Levin said his service is not focused only on death, but was built to store all of a user’s information during life. “We’re not Final Roadmap, we’re not Everplans, we’re Estate Assist,” he added. “We’re a resource that helps you during life, but it does have huge implications after you pass.”


Family Physicians Play Key Roles At The End Of Life, Study Finds

Posted on Tuesday, September 30th, 2014 at 9:22 am by lifemediamatters

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Courtesy WikiMedia Commons

Family physicians play a vital role in helping terminally ill patients to die in comfortable and familiar surroundings, according to new findings published in the Annals of Family Medicine.

Researchers, led by Thijs Reyniers, from Vrije Universiteit Brussel in Belgium, sought to better understand family physicians’ perceptions regarding their roles and the difficulties faced caring for the seriously ill. Discussions with 39 family physicians, also known as primary care doctors, from across Belgium were transcribed and analyzed.

Five pivotal roles of family physicians were identified: care planner, anticipating future scenarios; initiator of decisions in acute situations, mostly in an advisory manner; provider of end of life care, in which competency and attitude is considered important; provider of support, being available during acute situations; and as a decision maker, taking overall responsibility. In Belgium there is a strong emphasis on primary care, with almost 95 percent of the population having a family physician whom they consult regularly.

Despite end of life care policies in Belgium aiming to help make home death more common and easier, the acute hospital setting remains the most common place for final care and death (52 percent). In comparison, 36 percent of U.S. patients die in hospitals, down from 49 percent in 1989. But the use of aggressive end of life care and hospital services has been steadily increasing in both countries in recent years.

“In an elderly population in the United States, intensive care unit use in the last month of life has been shown to have increased from 24 percent to 29 percent between 2000 and 2009. Moreover, in Belgium, as in other countries, the hospitalization rates of patients who died after a gradual decline have been found to increase exponentially in the last months of life,” researchers write.

In the U.S. and most European countries, the vast majority of patients say they wish to die at home, but most do not. Researchers suggest family physicians could help make home death more common and hope the study– being billed as the first to use a focus group methodology to explore the experiences of family physicians– will encourage more doctor-patient communication. Home or nursing home death is more likely when the family physician makes frequent visits to the patient in the last three months before death.

“Family physicians face many different and complex roles and difficulties in preventing and guiding hospital admissions at the end of life,” researchers add. “Enhancing the family physician’s role as a gatekeeper to hospital services, offering the physicians more end of life care training, and developing or expanding initiatives to support them could contribute to a lower proportion of hospital admissions at the end of life.”

One unnamed participant said a doctor’s attitude can determine whether-or-not a patient receives a late hospitalization:

What is avoidable for one colleague is not necessarily avoidable for another… I think it also has to do with the doctor’s own attitude. How you think about these things as a person… If you are convinced that you have to try and save the patient’s life in every case and at all cost, with all possible means, the patient will sooner be admitted to the hospital.

Being supported by a local palliative care services specialist was considered important and helpful to another doctor:

Therefore I also found it important to work with a palliative home team for once, to give you some breathing space… I think that it also benefits the family physician’s strength when you work with these people.


“Death Cafe”: End Of Life Conversations And Coffee Now Served Worldwide

Posted on Saturday, September 27th, 2014 at 9:12 am by lifemediamatters

This piece was first published in Voices in Bioethics. LMM President Randi Belisomo is a contributor.

Well-coiffed and clad in pink, Lori is hoping to learn about legacy. What does it mean and how can she leave one? This grandmother of seven wants to be remembered well, and she intends to create some memories before it is too late.

Aida sips coffee between tears. Her boyfriend died last week– one week shy of his 90th birthday. Well past 80 herself, she is looking for answers about what to do with her money. Should she spend it on herself or leave it to her children? She wants to ensure her life-savings isn’t frittered on cigarettes and alcohol if she chooses to create a will.

Lenore says “devastation” is what brought her here. She has experienced plenty in recent years, including the suicide of a 15 year-old grandson.

Death Cafe Logo (1)“It was the death of the future,” Lenore tells the other seven attending this afternoon “Death Cafe” at a senior center on Chicago’s northwest side. This event is just one in a “Death Cafe” movement stretching far beyond this middle class enclave in the shadow of O’Hare International Airport; more than one thousand “Death Cafe” events have been facilitated across the U.S., Europe, Australia and Asia since the first held three years ago this month in London. The objective of “Death Cafe,” always conducted over coffee and cake, is to “increase awareness of death with a view to helping people make the most of their finite lives.”

Dan Bulf, the volunteer moderator of this event, promises his predominately female crowd that by the end of the session, they will experience a “deeper sense of connection.” He asks everyone to be respectful and kind, emphasizing that “Death Cafe” is not intended to serve as grief support, counseling or as the determiner of right and wrong. “This is about your reality,” he tells the nodding seniors.

Bulf asks what a “good death” would look like.

“Amongst family.”

“As little pain and suffering as possible.”

“Leaving no mess behind.”

“On my own terms.”

“At peace with my decision.”

“Non-medicalized.”

“With no long-term health problems.”

Bulf smiles warmly after each answer; after all, this isn’t about right or wrong. Conversation flows about how to make such “good deaths” happen. Some factors can be controlled; others cannot.

“It really makes you aware of the reality we have to deal with eventually,” says 72 year-old Dean afterwards. “It’s challenging. Very challenging.”

Bulf agrees. Making that challenge easier is exactly why he became a “Death Cafe” facilitator. “This is the first step in dealing with death,” Bulf says. “This is an acknowledgement. Then you are comfortable and can start planning.”

Lizzy Miles, Death Cafe

Lizzy Miles, host of first U.S. “Death Cafe”

Lizzy Miles hosted the first American “Death Cafe” in a suburban Columbus, Ohio Panera Bread in 2012. She has since held one each month since, drawing attendees from promotions on social media, community newspaper advertisements and postings in the eatery. As a hospice social worker, Miles says she noticed very few broach the subject of death- even when on its brink. “Anywhere I went, if I told people I worked in hospice, they would tell me personal stories,” Miles says. “So I had the realization that people don’t talk, but some people want to.”

In Atlanta, at least 25 people each month are proving that to be accurate. “Death Cafe” attendees have ranged in age from 18-102, gathering in the visitor center at Oakland Cemetery. Mark LaRocca-Pitts, a former hospice chaplain, facilitates the two-hour events. “It’s a really real issue,” he says. “We have a saying that talking about sex won’t make you pregnant, and talking about death won’t kill you.”

Megan Mooney, who facilitates “Death Cafe” in St. Joseph, Missouri, says she believes its loose format is attractive to those who may be hesitant. “They can talk about whatever they want, there is nothing off-limits,” she says.

Meeting among similarly-minded strangers may make this topic less touchy.

“When they try to talk to their friends or families they get shut down or told they are morbid,” Mooney says. “They really want to have an authentic conversation about death, but they have no one to have that conversation with. They can here.”


Timing And Meaning Of Do-Not-Resuscitate Orders In The Palliative Care Setting

Posted on Wednesday, September 24th, 2014 at 12:11 pm by lifemediamatters

A Conversation With LMM Founder Dr. Mary F. Mulcahy

Although a do-not-resuscitate (DNR) order does not mean “do not treat,” that is how it is often interpreted, according to a study examining the level of care oncology inpatients at a tertiary care hospital received. The study found that the interpretation of DNR orders among oncology nurses and especially among physicians is variable and results in less aggressive care in general, and that DNR-status patients are more likely to die compared to full code–status patients, regardless of their disease severity. Other studies also show DNR orders influence care more broadly than perhaps patients intended.

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Timing And Meaning Of Do-Not-Resuscitate Orders In The Palliative Care Setting

Posted on Wednesday, September 24th, 2014 at 11:44 am by lifemediamatters

A Conversation With LMM Founder Dr. Mary F. Mulcahy

By Jo Cavallo for The ASCO Post

Although a do-not-resuscitate (DNR) order does not mean “do not treat,” that is how it is often interpreted, according to a study examining the level of care oncology inpatients at a tertiary care hospital received. The study found that the interpretation of DNR orders among oncology nurses and especially among physicians is variable and results in less aggressive care in general, and that DNR-status patients are more likely to die compared to full code–status patients, regardless of their disease severity. Other studies also show DNR orders influence care more broadly than perhaps patients intended.

Having ongoing conversations with patients from the time of their initial diagnosis and throughout their illness about their likely cancer trajectory, treatment options including benefits and alternatives, and their goals of care are crucial to ensuring that patients’ treatment wishes are followed during a medical emergency.

“If patients have a very clear feeling about what they would or would not want at the end of their life and understand they have a terminal illness and they do not wish to be resuscitated at the time of their death, then a DNR order is appropriate,” said Mary F. Mulcahy, MD, Associate Professor in Medicine, Hematology/Oncology at Northwestern University Feinberg School of Medicine in Chicago, and cofounder of Life Matters Media. “But a lot of patients are afraid of signing a DNR order because they think their treatment is going to be compromised or withheld.”

A more comprehensive directive than a DNR order is the Physician Orders for Life-Sustaining Treatment (POLST) paradigm (www.polst.org), which augments traditional methods for advance care planning and treatment preferences, including those for cardiopulmonary resuscitation (CPR), artificial nutrition by feeding tube, and antibiotic use, according to Dr. Mulcahy.

The ASCO Post talked with Dr. Mulcahy about the timing of DNR and POLST orders, the difficult end-of-life medical decisions for physicians even when a DNR order is in place, and how devices like pacemakers and implantable cardioverter-defibrillators are impacting end-of-life care.

Clarifying DNR

At what point in a patient’s care should DNR orders be applied?

Once a patient is diagnosed with an incurable cancer, regardless of how long that person may live, having an advance directive stating the patient’s wishes about the extent of medical care at the end of life is critical. The most important thing is that the directive be a living document and that there is ongoing conversation between the patient and the oncologist as the status of the cancer and the patient’s health changes.

Dr. Mary F. Mulcahy, LMM Co-Founder

Dr. Mary F. Mulcahy, LMM Co-Founder

Having a do-not-resuscitate order only applies at the time of the patient’s death. It is a directive for when the patient has stopped breathing and the patient’s heart has stopped beating. If a patient has lung cancer and develops pneumonia, what should the oncologist do if the patient has a DNR order in place—not treat the pneumonia? Well, maybe, or maybe not. A study investigating the preferences for other treatments among patients with DNR orders and those with attempt CPR orders found that half of the patients with DNR orders wanted comfort measures only and half wanted a higher level of treatment at a hospital.

The POLST paradigm tries to address this middle ground, which is the hardest part to interpret. Just because patients have a DNR order in place, physicians cannot assume that they do not want medical intervention. We are asking patients if they want to be resuscitated at the point of death, but we are not asking terminally ill patients with no further treatment options, “What would you like us to do in the event you develop pneumonia; would you want to go to the hospital for treatment?” This is the gap in conversation that POLST addresses.

I prefer the POLST paradigm approach to end-of-life medical planning because it includes two possible orders for resuscitation: do not attempt CPR (DNR) or attempt CPR, so it gives the patient more options. I had a patient—a physician—with metastatic colon cancer, and when she handed me her advance care directive, she said to do everything regardless of cost and chances of recovery, because she had seen firsthand that medical staff back off if a patient has a DNR order, and she was afraid that she wouldn’t be treated for a problem that was potentially treatable. That experience really hit home with me and made me appreciate what patients feel when they sign DNR orders.

Some patients are very clear about the care they want at the end of life, but they are in the minority. Most patients do not like to commit to a DNR order in the event a medical issue arises that is potentially fixable.

Some patients absolutely know that they never want to be in a hospital again, never want to be transferred to an intensive care unit, and don’t want treatment for extenuating circumstances beyond their cancer.

Ongoing Conversations

How can oncologists help patients in their end-of-life care decision-making?

More important than just checking off a DNR or resuscitate box on a form is understanding what someone’s goals are for care. That comes from having conversations with patients that outline those goals and may include possible medical scenarios as their cancer progresses and their health declines.

Some patients absolutely know that they never want to be in a hospital again, never want to be transferred to an intensive care unit, and don’t want treatment for extenuating circumstances beyond their cancer. Other patients may want treatment for anything that is potentially treatable. Having ongoing conversations with patients over the course of their cancer progression will help ensure that there is no misunderstanding about patients’ expectations for their end-of-life care.

Complicating Factors

Please describe how DNR orders can inadvertently complicate medical care.

The POLST form clearly states the two possible orders for resuscitation, which we have discussed. There is also a section that addresses the aggressiveness of care at the end of life, which is the harder part in the decision-making process.

When a patient has stopped breathing and his heart has stopped beating, not resuscitating that patient is a clear-cut decision. What is more difficult is the case in which a patient has impending health decline and there is a question, for example, of whether to intubate because of a health complication like pneumonia. We tend to put all the attention on the DNR order, but we need more attention focused on impending health catastrophes.

One morning I was on service and had a conversation with a patient with advanced breast cancer that was progressing rapidly. She was not my patient, but she wanted to fill out a DNR order, and she did. That evening, the patient went to the radiology department for a brain scan and had a seizure. The rapid-response team called to ask me if she should be intubated.

I was really unsure about what to do. I was the one who had had the conversation with the patient about her DNR order. I had even helped her fill out the form and I signed the form, and I didn’t know what to do. I finally decided to intubate her because I wasn’t sure if she had had a chance to talk to her family about her decision. The patient never recovered, but at least her family had time to process what was happening to her and to learn about the conversation I had had with her that morning, and I think it helped them come to terms with her death.

Legal Issues

Were you concerned about potential legal jeopardy?

I wasn’t worried at the time, but when I think about this case and all the legal avenues it could have taken, I am troubled. I have questioned myself over and over again about whether I made the right decision, and I’ve concluded that I did. But the end result certainly could have gone another way.

The family could have faulted me for going against the patient’s wishes not to be resuscitated, and I could have gotten into trouble. But these types of cases are always going to present themselves, and it is always going to be a struggle knowing patients’ true values and goals, and what is important to them.

That is why advance care planning is an ongoing process and not simply a DNR box to be checked off on a form. It is a process in which the patient accepts his or her illness and whereby the patient, family members, and medical team work together to do the right thing for the patient.

Sometimes patients want us to tell them what to do, and doctors can’t be afraid to do that, because these are hard decisions to make. When I meet patients for the first time, I try to get a sense of their character and what they want because I want to guide them in the right direction.

Some patients are never going to accept that they are going to die from their cancer and will always hold onto hope that there is something more that can be done. As oncologists, we have to change that unrealistic hope [for futile care] to hope for comfort and peace at the end of life.

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