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Showing posts with label end of life planning. Show all posts
Showing posts with label end of life planning. Show all posts
Local author Jeanne C. Hoff is an expert in end-of-life planning.
by Len Lear
With the onset of the new year, it is inevitable that many people will make new year’s resolutions to lose weight, start working out, stop smoking, etc. but I doubt if many people will resolve to make plans to deal with end-of-life issues, even though all of us will have to confront those issues sooner or later.
Jeanne Hoff knows this as well as anyone. Hoff, 73 (“You know that CoCo Chanel says to never trust a woman who tells you her real age,” she said), lives in Valley Forge with her husband, Bill, and two cats, both adopted from a no-kill shelter. She is the author of the book, “Between Now and Then: A Common-Sense End-of-Life Planning Guide for Baby Boomers (and the rest of us),” published in 2013 after more than 12 years of effort. Although she is not a lawyer or financial planner, she compiled many of the things she learned from the experts into her reader-friendly book.
The book has generated an outpouring of rave reviews. For example, Stephen H. Frishberg, an estate tax attorney for almost 40 years, said, “I found Jeanne’s book a wonderful primer for one’s life. It is informative, entertaining and most of all, gently directs the reader to consider serious alternatives that we all need to address but are reluctant to do so. A worthwhile read.”
Barbara M. Christy, a retired professional librarian for the Library of Congress, has written, “As someone who has already had to face many landmarks and landscapes of aging, I look back and wish this book had been there to guide me.”
Hoff recently conducted a five-part series (based on the book chapters) at the William Jeanes Library in Lafayette Hill as well as book-signing/meet-the-author events at the Radnor Memorial Library, the Lower Providence Township Library and Harleysville Book Store. She also participated in the recent “Sandwich Generation Series” hosted at several Eastern Montgomery County synagogues.
“Unfortunately,” she confessed, “several events never happened because NO ONE (her emphasis) signed up. People tell me they don’t want to talk about end-of-life topics. I was recently told that I should use a bait-and-switch tactic to reel them in.”
Hoff is a writer with an associates’ degree from business school and many years of working with and learning from highly successful people in business, finance and the law. She has been a paralegal, business founder/owner/operator (Blue Gardenia Flowers), a cemetery sales counselor and an artist.
The name of this book came out of a conversation Hoff had years ago with a man who said that he wasn’t afraid of dying; he was afraid of what might happen between now and then. “In retrospect,” said Hoff, “I see that his words were to become the title of this book and one of the sources of my inquiry into the question, ‘What do you want to do with the rest of your life between now and then?’
“When I tell people I have written a book about end-of-life planning, I often get the same reaction: ‘Don’t you think that’s a pretty morbid subject?’ They are referring to the fact that end-of-life planning sounds like it is about funerals and death. Well, yes, end-of-life planning does include those things but also much more. It also includes important legal, financial, medical and personal decisions that some people would prefer to ignore indefinitely … until later, whenever that is.
“After people hear my perspective of the importance of planning, most people generally, even if reluctantly, agree that end-of-life planning makes perfect sense. It was an entirely new concept for them to consider. Baby Boomers, in particular, have an admirable, forever-young philosophy of life that has served them well up to now; however, if they continue to make the choice to ignore the various aspects of retirement and aging, there will be problems ahead. I want them to at least be prepared for the potential consequences of their choice to ignore end-of-life planning and do their best to make wise choices and avoid problems.”
Hoff’s book is divided into five major chapters: legal; financial; funeral and burial; record-keeping; and personal.
Each chapter addresses the question, “What do you plan to do with the rest of your life between now and then?”
The book is available online at Amazon, Barnes & Noble, eBay, BuyBooksOnTheWeb.com or from the author at mgkgne@comcast.net
WASHINGTON—The U.S. needs to revamp its approach to end-of-life care and conversations about dying to save costs and improve patient care, according to a sweeping report released Wednesday by an influential health committee.
End-of-life conversations with medical providers should be covered by insurers and Medicare, said the report by the Institute of Medicine, an independent organization and the research branch of the National Academy of Sciences.
One impetus behind the study was concerns raised in 2009 about "death panels," a term that sprung up during political debates about what became the Affordable Care Act.
"Right now, there is too much fear and apprehension, and the discussions don't happen," said Phillip Pizzo, co-chair of the panel and former dean of the Stanford University School of Medicine.
"What we call for is that there be an opportunity for discussions with clinicians throughout the life cycle and not just one time," he continued. "It's part of the process of living."
The report by the nonpartisan committee is especially important these days as baby boomers age. The more than 70 million Americans born from 1946 to 1964 are starting to age into Medicare, which is available to Americans when they turn 65.
The program also covers the disabled.
People nearing the end of their lives experience high rates of preventable hospitalizations and often struggle with a fragmented system that may not be aware of their preferences regarding late-stage care, the report said.
Widespread adoption of timely palliative care, which focuses on pain relief, appears low, even though such treatment is linked to better quality of life and longevity.
Improving end-of-life care should tie financial incentives to advance-care planning and frequent clinician-patient conversations, the report said.
Medicare incentives in place today may have the opposite effect, the report says, by encouraging late enrollment in hospice facilities and more transitions among care settings.
"We have a fragmented, disjointed approach that results in people not getting what they want," said David Walker, who served as U.S. comptroller general and was co-chair of the panel that worked on the report.
Some of the recommendations may require policy changes, he said.
Patients currently can't generally be referred to a hospice until they are expected to die, which is within six months, which means many get this type of care too late. People in hospices also may not have access to certain curative treatments.
A 2009 version of the health law required that Medicare begin paying physicians for counseling patients on end-of-life planning, such as setting up a living will or obtaining hospice care.
Such policies, however, became erroneously labeled as calling for "death panels."
The furor resulted in those policies being omitted from the final 2010 health law, and later attempts by the Obama administration to reimburse for such care got shelved.
This year, the American Medical Association provided the Centers for Medicare and Medicaid Services with proposed service codes so the program could pay physicians for having advance-care planning sessions with patients. That may lead the government to adopt a payment policy that would reimburse for those services.
Some private insurers already are beginning to reimburse physicians and clinicians for having end-of-life conversations, Mr. Walker said, a sign that such discussions improve patient care and also help save money.
Discussions about dying and medical care should occur during major life transitions, such as obtaining a driver's license, getting married and enrolling in Medicare, said those who worked on the IOM report.
The document, which is more than 500 pages, also suggests all health-care professionals be required to have training in holding such conversations.
"The important point that may be hard for the public to believe is that their doctors and nurses have had no training in how to have conversations on what matter most to patients," said Diane Meier, director at the Center to Advance Palliative Care and a professor at Icahn School of Medicine Mount Sinai in New York, who also worked on the report.
The National Hospice and Palliative Care Organization said it supported some of the conclusions, including paying physicians for end-of-life conversations and earlier use of hospices.
"Our current system is broken in some ways in dealing with end-of-life care," spokeswoman Anita Brikman said.
Advance planning is especially important because the majority of patients nearing the end of life will receive acute hospital care from physicians who don't know them, the report said. Planning is vital to ensure that patients obtain care that fits their goals and preferences, the report said.
Younger, poorer, minority and less-educated individuals tend not to have end-of-life conversations, the report noted.
Dr. Joseph Hinterberger discussed end-of-life care with Mary Ann Zebrowski. If reimbursed, “I’d do one of these a day,” he said.CreditHeather Ainsworth for The New York Times
DUNDEE, N.Y. — Five years after it exploded into a political conflagration over “death panels,” the issue of paying doctors to talk to patients about end-of-life care is making a comeback, and such sessions may be covered for the 50 million Americans on Medicare as early as next year.
Bypassing the political process, private insurers have begun reimbursing doctors for these “advance care planning” conversations as interest in them rises along with the number of aging Americans. People are living longer with illnesses, and many want more input into how they will spend their final days, including whether they want to die at home or in the hospital, and whether they want full-fledged life-sustaining treatment, just pain relief or something in between. Some states, including Colorado and Oregon, recently began covering the sessions for Medicaid patients.
But far more significant, Medicare may begin covering end-of-life discussions next year if it approves a recent request from the American Medical Association, the country’s largest association of physicians and medical students. One of the A.M.A.’s roles is to create billing codes for medical services, codes used by doctors, hospitals and insurers. It recently created codes for end-of-life conversations and submitted them to Medicare.
The Centers for Medicare and Medicaid Services, which runs Medicare, would not discuss whether it will agree to cover end-of-life discussions; its decision is expected this fall. But the agency often adopts A.M.A. recommendations, which are developed in meetings attended by its representatives. And the political environment is less toxic than it was when the “death panel” label was coined; although there are still opponents, there are more proponents, including Republican politicians.
If Medicare adopts the change, its decision will also set the standard for private insurers, encouraging many more doctors to engage in these conversations.
“We think it’s really important to incentivize this kind of care,” said Dr. Barbara Levy, chairwoman of the A.M.A. committee that submits reimbursement recommendations to Medicare. “The idea is to make sure patients and their families understand the consequences, the pros and cons and options so they can make the best decision for them.”
Now, some doctors conduct such conversations for free or shoehorn them into other medical visits. Dr. Joseph Hinterberger, a family physician here in Dundee, wants to avoid situations in which he has had to decide for incapacitated patients who had no family or stated preferences.
Recently, he spent an unreimbursed hour with Mary Pat Pennell, a retired community college dean, walking through advance directive forms. Ms. Pennell, 80, who sold her blueberry farm and lives with a roommate and four cats, quickly said she would not want to be resuscitated if her heart or lungs stopped. But she took longer to weigh options if she was breathing but otherwise unresponsive.
“I’d like to be as comfortable as I can possibly be,” she said at first. “I don’t want to choke, and I don’t want to throw up.”
With reimbursement, “I’d do one of these a day,” said Dr. Hinterberger, whose 3,000 patients in the Finger Lakes region range from college professors to Mennonite farmers who tie horse-and-buggies to his parking lot’s hitching post.
If Medicare covers end-of-life counseling, that could profoundly affect the American way of dying, experts said. But the impact would depend on how much doctors were paid, the allowed frequency of conversations, whether psychologists or other nonphysicians could conduct them, and whether the conversations must be in person or could include phone calls with long-distance family members. Paying for only one session and completion of advance directives would have limited value, experts said.
“This notion that somehow a single conversation and the completion of a document is really an important intervention to the outcome of care is, I think, a legal illusion,” said Dr. Diane E. Meier, director of the Center to Advance Palliative Care. “It has to be a series of recurring conversations over years.”
End-of-life planning remains controversial. After Sarah Palin’s “death panel” label killed efforts to include it in the Affordable Care Act in 2009, Medicare added it to a 2010 regulation, allowing the federal program to cover “voluntary advance care planning” in annual wellness visits. But bowing to political pressure, the Obama administration had Medicarerescind that portion of the regulation. In doing so, Medicare wrote that it had not considered the viewpoints of members of Congress and others who opposed it.
Politically, the issue was dead. But private insurers, often encouraged by doctors, began taking steps.
“We are seeing more insurers who are reimbursing for these important conversations,” said Susan Pisano, a spokeswoman for America’s Health Insurance Plans, a trade association. The industry, which usually uses Medicare billing codes, had created its own code under a system that allows that if Medicare does not have one, and more insurance companies are using it or covering the discussions in other ways.
This year, for example, Blue Cross Blue Shield of Michigan began paying an average of $35 per conversation, face to face or by phone, conducted by doctors, nurses, social workers and others. And Cambia Health Solutions, which covers 2.2 million patients in Idaho, Oregon, Utah and Washington, started a program including end-of-life conversations and training in conducting them.
Excellus Blue Cross Blue Shield of New York does something similar, and its medical director, Dr. Patricia Bomba, has spearheaded the development of New York’s advance directive system. Doctors can be reimbursed $150 for an hourlong conversation to complete the form, and $350 for two hours.
Dr. Hinterberger learned of Excellus’s coverage when he called recently to ask about end-of-life discussions, but even if he undergoes Excellus’s training to qualify for reimbursement, most of his older patients have only Medicare.
End-of-life planning has also resurfaced in Congress. Two recent bipartisan bills would have Medicare cover such conversations, and a third, introduced by Senator Tom Coburn, Republican of Oklahoma, would pay Medicare patients for completing advance directives.
But few people think the bills can pass.
“The politics are tough,” said Dr. Phillip Rodgers, co-chairman of public policy for the American Academy of Hospice and Palliative Medicine. “People are so careful about getting anywhere close to the idea that somebody might be denying lifesaving care.”
Burke Balch, director of the Powell Center for Medical Ethics at the National Right to Life Committee, said in a statement that many doctors believed in “hastening death for those deemed to have a ‘poor quality of life.’ ” If Medicare covers advance care planning, he said, that plus cost-saving motivations will pressure patients “to reject life-preserving treatment.”
Doctors deny that.
“Honestly, sometimes I’m making an argument that treatment is not as bad as you think because of our ability to mitigate side effects,” said Dr. Thomas Gribbin, a Grand Rapids, Mich., oncologist who recently persuaded two Michigan insurers to cover end-of-life conversations.
The conversations do not lock people into decisions, and studies show that some change their minds in a crisis.
But evidence suggests that discussions can make a difference. One studyfound that cancer patients who previously discussed end-of-life preferences with doctors more often received care matching those wishes. Other studies suggest planning lowers stress in patients and families.
Reimbursement rates for talking are much lower than for medical procedures. But doctors say that without compensation, there is pressure to keep appointments short to squeeze in more patients. “Not to be crass about this, you’re just giving that service away,” Dr. Rodgers said.
Recently, Dr. Hinterberger took time from other patients and his duties at Schuyler Hospital in Montour Falls, N.Y., to conduct end-of-life conversations in his frank, casual style.
He told Ms. Pennell that if she experienced severe pneumonia or a serious accident, doctors might consider putting her on a ventilator or inserting a feeding tube. She could stipulate that she wanted only pain relief, essentially instructing doctors to “just kiss me and tell me you love me,” he said. Or she could ask for short-term interventions in case “you perk back up.” Or she could indicate, “I want everything. Just do it, do it,” he said.
“The middle option,” she eventually decided.
When Janice Ryan, 89, a former protective services worker with a bone marrow disorder, said she wanted nothing “unless I can recover and feel wonderful,” Dr. Hinterberger gently suggested allowing doctors to try.
“Give the doc some options,” said her husband, Dick, a retired professor. She agreed, but added, “I want quality of life; I don’t want to just be a vegetable.”
Dr. Hinterberger spent 40 minutes with Helen Hurley, 83, whose lung disease requires her to use nasal tubes connected to an oxygen tank she carries in a flowered bag. Then she tired, asking to finish the discussion in future visits, “a little at a time.”
But Mary Ann Zebrowski, 75, a retired vineyard worker with diabetes and arrhythmia, had a lot to say. She described her husband’s collapse in 2008, saying she was glad he had been resuscitated, but felt pressured to agree to a feeding tube because a doctor said, “What are you trying to do, kill your husband?” She eventually decided to remove the tube and let him die.
She said she wanted no feeding tube for herself, but short trials of other measures. Afterward, she seemed relieved, saying, “I just don’t want to put my kids through having to make these decisions.”
