Category: Advance Directives

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A Checklist Before Dying

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[I]n early 2015, my mom was in a car wreck. She sustained extensive injuries and died two weeks later. I was 35 at the time, surrounded by chaos, and had no idea what I was doing.

You hate to look on the bright side of life-altering tragedy, but I’m still so grateful to my mom for having her affairs in order. Because her accident was so sudden, it took a few days to locate her end-of-life documents. Once we did, it felt like there was a shift in my brain chemistry. We now had guidelines to help us respond to this terrible, traumatic event.

A lot of people believe it’s too difficult or macabre to think about, much less plan for, your own death. But confusion, exhaustion, and terror are the norm in the wake of enormous loss. Planning ahead helps reduce your family’s stress when they’re already in their own personal hell.

If you have a contentious relationship with your family of origin, it’s extra important for you to draw up wills and other relevant legal documents. If something terrible were to happen to you, somebody you don’t like or respect but happen to share blood with may have more say than the people who are actually important to you. Paperwork can help prevent that.

Here is an overview of how to prepare for the (inevitable) worst:

Your Last Will and Testament

Most of us learn about wills from television, though I’m not sure there’s actually ever been a dramatic scene immediately after a funeral where a lawyer sits down with a bunch of people and parcels out the deceased’s belongings.

A will serves two functions:

  1. To appoint an executor of the estate
  2. To express the deceased’s wishes about distribution of assets

It doesn’t matter how much or how little a person had in this world. When they die, their assets and debts become the property of “the Estate of [Deceased Person].” An executor of an estate is the person put in charge of making sure the estate is handled properly—which does sometimes come down to parceling out the deceased’s belongings.

You should know that, even if you say “please leave all my money to these people or this organization,” if you die with a bunch of debt, it’s likely the debt will have priority over your wishes.

A durable power of attorney

This document outlines how incapacitated you have to be to let some (specific) person handle your money. Even if you don’t want anyone else to touch your money, consider the logistics; setting up a power of attorney lets someone else sign checks to pay your light bill or rent, for example, without technically committing fraud. (We always forget about the little stuff.)

You have to specifically appoint a person for this role. Once you die this document ceases to be of any value and the executor of your estate takes over.

Your medical directives

This document lays out the manner in which you wish to live vs. do not wish to live. These documents vary massively by state. In general, states with Right to Die laws will have more much more detailed requirements. If you draft a medical directive in one state and then wind up becoming grievously ill or injured in another state, they should still honor the spirit (if not the letter) of this document.

I did mine in Oregon. It’s a three-page list of yes/no scenarios. You have to consider your own mortality, but other than that, it’s really not that daunting. All you have to do is express what you’d like to happen to you, should the worst happen.

You have to specifically appoint a person to execute your medical directives as well. A doctor will not look at this document and enforce it based on their own judgments about your condition. So make sure the person you appoint to do this is someone who understands your wishes and respects your values, because this document will empower them to either enforce or override your choices.

An estate attorney

A will, a durable power of attorney, and a medical directive should all be drawn up with a lawyer. The people that specialize in this area of the law are called estate attorneys. The estate attorney should be able to tell you upfront how much it will cost to draw these documents up and a lot of times you can work out a payment plan with them.

This attorney will keep a copy of each of these documents in their files. You should also keep copies in a safe place that other people know about and can access should you be in a medical crisis and unable to communicate. It may also be wise to give copies to the people who have appointed roles in your end-of-life documents.

Life insurance

You should have life insurance if you have any outstanding debts or dependents. My understanding is that your life insurance should equal your debt + five years of your salary + your child’s/children’s estimated college tuition, but do your own research on what’s best for you—and do some research on which of your debts are forgiven in death and which are not.

If you have no major debt and no dependents, you could skip the life insurance part, but keep in mind that life insurance beneficiaries can also be parents or other relatives, all of whom could probably use the money—especially if they are anticipating support in their retirement years and/or paying for the cost of your funeral.

Love letters

Any final lovely words you want to write to the wonderful people in your life? Better yet, any petty stuff you want to make sure you get the legit last word on? Write it in a letter, seal it in an envelope and keep with the other documents.

Lists of accounts, important contacts, assets and debts

Accounts: A list of all your credit cards, checking and savings accounts, including where they’re held and branch information if necessary.

Important contact info: The attorney who helped draft your legal documents, your doctor, your health insurance, your pet’s veterinarian, etc. If someone had to suddenly take over your whole life, what do they need to know?

Assets: Retirement accounts, a 401(k) program at your work, any property you might own (with the mortgage holder listed), savings bonds, certificates of deposit, etc. You can leave out the account numbers if you have privacy concerns; what you’re really doing is making a road map for whoever will be handling your affairs.

Debts and bills: Student loans, credit cards, mortgages, auto loans, etc. Don’t forget your rent, utilities, subscriptions, child support, memberships, and donations that auto-renew. List every single thing that bills out of your account monthly, quarterly, annually.

Update this information every time you change your clocks and put the revision date at the top. (Also, change your smoke alarm batteries while you’re at it.)

Funeral preparations and preferences

You can get as specific as you want with this, but at the bare minimum let people know if you want a burial or cremation and where you want your remains to go. (Especially if you come from a large family or if there are any religious or cultural differences to consider.)

Obituary draft

Obituaries have to be filed for a few reasons. Many states have public disclosure laws for debt collection that require an obituary. Also, people might want to come to your funeral (or at least know you died) who aren’t in your immediate social and family circles. Draft a super basic obituary that includes where you were born along with the names of your parents, siblings, children, etc. A few broad strokes about your life, where you went to school, worked, what you enjoyed doing, etc.

It’s going to be painful for your loved ones to write about you in the past tense, so giving them a rough draft can be very helpful—especially because the obituary usually has to be written immediately  after a person’s death.

Make sure people know where this stuff is!

Keep it somewhere secure. But let the right people know how to access it. A fireproof safe in your house? Make sure someone knows where the keys are. A safe deposit box? Make sure someone else has access to it. In a folder on your laptop labeled “Death Prep?” You’d better give someone else the password and the file path. Under the floorboards? Whatever, just make sure people can find it and have access to it if you are suddenly incapacitated.

Final note

The less mess you leave for someone to clean up, the less you’ll complicate the grief for people who love you. All the secrets you have stashed around your life? Someone has to clean that up. Know that the dead have zero privacy; all of your porn, medical history and drug habits will be 100 percent somebody else’s business now. Appoint an executor who has some chill, and good luck in the next plane of existence.

Disclaimer: I’m not a lawyer, nor a financial advisor. I’m terrible at math and I hate dealing with people. This is not professional advice and you should definitely pay an actual grown-up $200/hour to explain how the basic tenets of our society functions because your pain, fear and confusion is the grease that keeps the ruthless machine of capitalism churning. Above all, do not sue me if you mess up your own life!

Complete Article ↪HERE↩!

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New study looks at end-of-life decision making for people with intellectual disabilities

by Bert Gambini

 
[A] new study by researchers at the University at Buffalo provides a groundbreaking look at how advance care planning medical orders inform emergency medical service (EMS) providers’ experiences involving people with intellectual disabilities.

Most states in the U.S. have programs that allow to document their end-of-life decisions. In New York, the Medical Orders for Life-Sustaining Treatment form (MOLST) allows individuals to document what measures , including EMS providers, should take near the end of a patient’s life.

Studies suggest that this approach to person-centered advance care planning can alleviate a dying patient’s pain and suffering, according Deborah Waldrop, a professor in the UB School of Social Work and an expert on end-of-life care. Yet little research on end-of-life decision-making has been done on the growing population of older Americans with intellectual disabilities, which the American Association on Intellectual and Developmental Disabilities defines as a disability characterized by significant limitations in learning, reasoning, problem solving, and a collection of conceptual, social and practical skills.

Waldrop and Brian Clemency an associate professor of emergency medicine in the Jacobs School of Medicine and Biomedical Sciences, authored one of the first scholarly examinations of how pre-hospital providers assess and manage emergency calls for patients who do not wish to be resuscitated or intubated. Jacqueline McGinley, a doctoral candidate in UB’s School of Social Work, joined their research team and served as first author for their most recent work.

Through a series of interviews with five different agencies in upstate New York, the researchers asked EMS providers specifically how forms like the MOLST shape what they do in the case of someone with an intellectual disability.

“The best available research before our study suggested that as of the late 1990s, fewer than 1 percent of people with intellectual disabilities had ever documented or discussed their end-of-life wishes,” says McGinley. “But with this study, we found that about 62 percent of the EMS providers we surveyed had treated someone with an intellectual or developmental disability who had these forms.”

That disparity points to the need to illuminate this understudied area of how people with intellectual disabilities are engaging in end-of-life discussions, according to McGinley.

She says the EMS providers’ charge is to follow protocol by honoring the documents, their directions and organizational procedures. The MOLST, as its name implies, is a medical order that providers are professionally bound to respect. Their procedures are identical for all emergency calls involving someone who is imminently dying regardless of a pre-existing disability, the study’s results suggested.

But questions remained.

“We heard from providers who wrestled with the unique issues that impact this population, including organizational barriers when working across systems of care and decision-making for individuals who may lack capacity” says McGinley.

There are approximately 650,000 adults age 60 and older in the U.S. with intellectual disabilities, according to Census Bureau figures from 2000. Demographers expect that figure to double by 2030, and triple within the foreseeable future.

Person-centered advance care planning specifically involves the individual in discussions about their health history, possible changes to their current health status and what future options might be available in order to best inform that person’s end-of-life decision-making.

The results, published in the Journal of Applied Research in Intellectual Disabilities, suggest that medical orders largely favor efforts to prolong life. This may be due to a reluctance to discuss advanced care planning in this population. Still, this sociocultural context must be strongly considered as future research explores how people with intellectual engage in end-of-life discussions.

Since January 2016, Medicare pays for patients to have conversations with medical providers. In fact, at least once a year, as part of a service plan through the state, people with have face-to-face discussions with their service providers, according to McGinley, who notes the importance of this built-in opportunity to have conversations about serious illness and the end of life.

“What’s most important in all of the work we do is knowing that people can die badly,” says Waldrop. “We know we can make changes that illuminate some of the uncertainties and improve care for people who are dying. Knowing how forms, like the MOLST, are applied in the field is an incredible step in the right direction.”

Complete Article HERE!

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Don’t Neglect the Softer Side of Your Estate Plan

Document and share your wishes for end-of-life care, the care of your pets, the disposition of your tangible assets, and more.

By Christine Benz

[A]s my family’s “first responder” and resident financial person, I served as power of attorney for my parents, as well as executor and trustee for both.

Their estate-planning documents attended to a lot of crucial issues: the distribution of their assets, the trusts that were to be set up upon each of their deaths, and their attitudes toward life-sustaining care.

Yet having gone through the process of seeing my parents through their last years and settling their estates, I’m struck by the number of “softer” decisions these documents didn’t cover–important topics like their attitudes toward receiving care in their home or in a facility, or whether they’d prefer to die at home or if a hospital was OK. Did I need to split up all of the physical assets equally among the children, or were they OK with me letting more stuff go to family members with a greater need for them?

Implicit in making someone an executor, trustee, or guardian, or delegating powers of attorney, is a statement that that you trust that person’s judgment to do what is best in various situations, including some of those outlined above. But I think it’s worthwhile to think through some of the softer, nonfinancial issues that could arise in your later years. Some of these issues, such as providing for the care of pets or getting specific about the disposition of your physical property, can be addressed with legally binding estate-planning documents. Other issues, such as how you’d like your loved ones to balance your care with their own quality of life, are best discussed with your loved ones and/or documented in writing on your own. (If you decide to leave physical or electronic documents that spell out your wishes on some of these matters, be sure to let your loved ones know how gain access to them.)

Attitudes Toward Guardianship
If you have minor children and have designated guardians to care for them if something should happen to you, you of course need to inform the guardians and make sure they’re OK with the responsibility. In addition, take the next step and communicate to your designated guardians about your priorities and values as a parent–your attitudes toward their education, spirituality, and financial matters, for example. And even if your children are grown–or getting there–it’s worthwhile to talk to close friends or family members about how you hope they’ll interact with your kids if you’re no longer around. After my sister lost a dear friend to cancer, for example, she and a group of other close friends serve as surrogate “moms” to their late friend’s daughter, now in her mid-20s. There’s no substitute for an actual mom, of course but it’s a relationship they all cherish, and they’re happy they discussed it with their friend before she passed away.

Attitudes Toward Life During Dementia
Given the increased incidence of dementia in the developed world, an outgrowth of longer life expectancies, it’s worth thinking through and communicating to your loved ones your attitudes toward your care and quality of life if you develop dementia. Would you prioritize in-home care above all else, or would care delivered in a facility be agreeable if it improved your spouse’s quality of life? Would you want your spouse or other loved ones to try to care for you themselves for as long as possible, or would you rather they delegated those responsibilities to paid caregivers, assuming the family finances could support it? How would you like your loved ones to balance your quality of life with their own? How would you like them to balance your health and safety with your own quality of life? How important would it be to you to receive daily visits from your spouse and other loved ones, even it meant that those obligations would detract from their ability to travel or pursue other activities? Would you prefer to keep your decline as private as possible, or would you rather be out in public interacting with people no matter what? There’s no “right” answer to any of these questions, but talking through them can help your loved ones be at peace with the decisions they could eventually make.

Attitudes Toward End-of-Life Care
I first became aware of The Conversation Project, designed by to help people discuss their own thoughts on end-of-life care, on NPR. In the segment, two adult daughters used “The Conversation” template to interview their elderly dad about the decisions they might eventually make on his behalf. Their father had drafted an advance directive that specified, rather strictly, that he didn’t want any life-sustaining care if he had no chance for a good quality of life. But one of the daughters asked whether it would be OK if they took a bit more time with the decision to let him go if it provided them with a sense of peace. Without skipping a beat, the dad said, “Oh, of course. Absolutely.” That conversation drove home the importance of adding nuance to the end-of-life discussion, above and beyond what could be provided by living wills or advance directives. You can read more about The Conversation Project and download a conversation starter kit here, but don’t feel bound by it. If there are important end-of-life issues that it doesn’t address, feel free to expand the discussion with your loved ones and/or commit them to writing.

Attitudes Toward Funerals, Burials, Etc.
Many people make plans for any funerals/memorials and the disposition of their bodies well in advance; the right approach to these issues may be predetermined by culture or religion. But for other people, attitudes toward these matters aren’t obvious at all, so it’s useful to spell out your wishes in advance, either verbally, in writing, or both. (My mother initially insisted that my dad would be buried rather than cremated, but even she was convinced that cremation was the right thing after we found three written statements from him about his desire to be cremated.) Maybe your wishes are simply to have your loved ones say goodbye in whatever way gives them the most peace at that time; in that case, tell them that or write that down.

Attitudes Toward Care of Pets
It’s a cliche to say that pets are like family members, but for many people, that’s absolutely the case. The good news is that you can actually lay the groundwork for continuing care for your pet as part of your estate plan. The gold standard, albeit one that entails costs to set up, is a pet trust; through such a trust, you detail which pets are covered, who you’d like to care for them and how, and leave an amount of money to cover the pet’s ongoing care. Alternatively, you can use a will to specify a caretaker for your pet and leave additional assets to that person to care for the pet; the downside of this arrangement is that the person who inherits those assets isn’t legally bound to use the money for the pet’s care. At a minimum, develop at least a verbally communicated plan for caretaking for your pet if you’re unable to do so–either on a short- or long-term basis. This fact sheet provides helpful tips to ensure for your pets’ continuous well-being.

Attitudes about Disposition of Personal Possessions
Are there specific physical assets you’d like to earmark for children, grandchildren, nieces, nephews, or friends? If so, your estate-planning attorney can help you codify the disposition of those assets in your will so there’s no confusion. Also let your loved ones know if there are physical assets that you’d like to stay within the family (again, your will is the best way to do this). Importantly, you should also let them know what you don’t feel strongly about them selling or otherwise disposing of when you’re gone. Do you want your executor to take pains to divide the assets equally among your heirs so that everyone receives tangible property of similar value? The topic of dividing up tangible property among family members is a complicated one, to put it mildly; the more you say about your wishes in advance, the better off everyone will be in the end.

Complete Article HERE!

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How To Take Charge Of Your End-Of-Life Care—And Why You Should Care About It Right Now

Simple tips for navigating the world of advance directives and health care proxies.

By Jen Mccaffery

It’s not an easy subject, but end-of-life planning is a necessary one to to consider.

To get started, it’s a good idea for every adult over 18 to create an advance directive—a set of legal documents that typically has two components: a health care power of attorney, in which you appoint someone called a health care proxy to make decisions for you if you’re unable to, and a living will, in which you lay out your end-of-life treatment preferences.

You might specify, for example, that you consent to antibiotics and pain medications but not CPR, which can cause internal injuries. You can also state that you prefer to die at home. In fact, according to the New England Journal of Medicine, people with advance directives are more likely to avoid dying in a hospital.

Assembling the documents is easy. You fill out paperwork available online through your state’s Department of Aging, and these documents become legally valid after you sign them in front of witnesses. The number of witnesses required varies by state, but you don’t need a lawyer, according to the National Hospice and Palliative Care Organization. After signing the paperwork, give copies to your health care proxy and your doctor. You can change your plan at any time.

Despite the ease of creating the documents, most Americans haven’t done it. In the most thorough study on the topic to date, University of Pennsylvania researchers examined data on more than 795,000 people from 150 studies and found that advance directives were only slightly more prevalent among people with chronic illnesses (38.2%) than healthy adults (32.7%).

“We need to address common barriers to filling out these important documents, particularly among chronically ill patients,” says study co-author Katherine Courtright, MD, an instructor of medicine at Penn. These obstacles include a reluctance to talk to family members about end-of-life preferences—one Yale study found that 40% of people ages 55 and older said they hadn’t broached the topic with relatives—and concerns about the potential time and expense involved.

“Dying in America today can be a protracted, painful, and traumatic experience,” says Sara Moorman, PhD, an associate professor of sociology at Boston College. “And that’s unfortunate, because we possess the know-how to make most deaths comfortable and even meaningful.”

Here are two resources to get you started:

The Conversation Project
Studies have shown that many people don’t talk to family members about what medical interventions they would or wouldn’t want at the end of life. The Conversation Project, however, can help you do just that. The site provides starter kits for family discussions and for appointing a health care proxy.

Prepare for Your Care
Prepareforyourcare.org provides advance directive forms and takes you through filling them out and sharing them with family and medical providers.

Complete Article HERE!

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Despite advance directive, Oregon dementia patient denied last wish, says spouse

Nora Harris, 64, a former librarian, signed an advance directive after her diagnosis to prevent her life from being prolonged when her disease got worse. Now, her husband said, she’s being kept alive with assisted eating and drinking against her stated wishes.

Bill Harris walks with his wife, Nora, at the Fern Gardens memory care center in Medford, Oregon. Nora Harris, 64, has late-stage Alzheimer’s disease. A former librarian and world traveler, she had signed an advance directive stipulating no care to prolong her life. Controversy has arisen over her husband’s claim that state law is forcing her to be spoon-fed against her stated wishes.

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[B]ill Harris is blunt: For more than a year, he has been trying to help his wife die.

The 75-year-old retired tech worker says it’s his duty to Nora Harris, his spouse of nearly four decades, who was diagnosed with early-onset Alzheimer’s disease in 2009.

“Let me be honest: Yes. It’s what she wanted,” he said. “I want her to pass. I want her to end her suffering.”

Nora Harris, 64, a former librarian, signed an advance directive after her diagnosis to prevent her life from being prolonged when her disease got worse. Now, her husband said, she’s being kept alive with assisted eating and drinking against her stated wishes.

The onetime Virginia Woolf scholar and world traveler can no longer communicate, recognize family members or feed herself. She’s being spoon-fed at Fern Gardens, an assisted-living center in southern Oregon, after a local judge ruled against Bill Harris last summer, concluding that state law mandates that she continue to receive help.

“She did not want to be in a position where somebody had to totally take care of her,” Bill Harris said. “When nature, through the disease, basically said, ‘I can’t feed myself,’ Nora’s position was, that’s it. Let nature take its course.”

In recent weeks, Nora Harris has been gaining weight, climbing from less than 100 pounds to 102 or 103 — just enough to keep her stable. Bill Harris learned that, in addition to three state-required daily meals, staffers have been feeding Nora optional snacks, too.

Now he’s considering going back to court to try to stop the snacks in an effort to let Nora Harris lose enough weight to end her life. Twice before, in 2015 and 2016, she fell to 90 pounds and was enrolled in hospice, with six months or less to live, only to rebound, he said, when staffers coaxed her to eat.

“You’re denying Nora the right to die on her terms,” Bill Harris said. “It’s not a right-to-life issue, it’s a right-to-die issue.”

The southern Oregon case underscores the complexity surrounding the use of advance directives for people with Alzheimer’s disease and other dementias.

Bill and Nora Harris met at the San Francisco War Memorial Opera House in the early 1970s and launched a four-decade marriage that included world travel. Nora Harris was a librarian and a Virginia Woolf scholar who told family and friends she never wanted to be utterly dependent on others for care.

Advance directives are legal documents that spell out a person’s end-of-life wishes if they are unable to make their own decisions.

These directives generally allow named agents the power to withdraw artificial hydration and nutrition in the form of feeding tubes, for instance. But when that same nourishment is offered by hand, several states, including Oregon, draw a line, said Thaddeus Mason Pope, director of the Health Law Institute at Hamline University in St. Paul, Minnesota, and an expert on end-of-life law.

Across the U.S., the more than 5 million people living with dementia are typically encouraged to put their end-of-life wishes into writing early and to pick a trusted person to carry them out, said Beth Kallmyer, vice president of constituent services for the Alzheimer’s Association.

That’s no guarantee, however, that those requests can — or will — be honored. In Nora Harris’ court case, her advance directive and testimony from her husband, her daughter and two close friends all indicated that she wouldn’t want anything to prolong her life.

“That court decision basically condemned Nora to the full extent of the Alzheimer’s disease,” Bill Harris said. “They gave her no exit out of this situation.”

But Eric Foster, the court-appointed lawyer who represented Nora Harris, argued that her directive doesn’t specifically mention food and drink presented by hand. Because she now opens her mouth and swallows when food is offered, she has, in essence, changed her mind, he said in a court document.

Bill Harris said that opening her mouth is a reflex, an automatic response to six decades of habit.

Kallmyer, with the Alzheimer’s Association, said it’s hard to tell whether someone with dementia is acting out of reflex or desire. The association recommends against tube-feeding for patients with dementia, while also advising what they call “careful hand-feeding.”

“If they’re eating and they’re opening their mouth, it’s difficult to say they didn’t want it,” she said.

Foster’s stance was backed by a judge who sympathized with Bill Harris’ plight, but sided with Fred Steele, Oregon’s ombudsman on long-term care. Steele said Nora Harris’ advance directive wasn’t specific enough to advise Fern Gardens staff to withhold food and water.

“Our concern was just focused on the administrative rule,” he said. “If the rule exists to prevent a facility from committing elder abuse, our focus was on what the rule required. The rule requires the resident be cued with food and they have the choice of eating or not eating.”

Lynn Rawlins, the center’s administrator, said her hands are tied.

“We have to feed them until they stop opening their mouths,” she said before a tour of the center last month. “Unless feeding them causes more harm from aspirational pneumonia or a choking factor. We still have to feed them, even if they choke.”

Nora Harris is a small woman with graying brown hair and dark, confused eyes. On a recent 88-degree summer afternoon, she wore a maroon fleece sweater, gray sweatpants and mismatched socks.

She spoke in urgent whispers, syllables spilling out, unlinked from words.

Bill Harris put an arm around her shoulders reassuringly.

“Absolutely,” he said. “Of course.”

But he added later: “It’s difficult visiting her, especially when you know what Nora was like before.”

That’s the thorny issue at the heart of advance directives for people who lose the capacity to make their own decisions, said Pope.

If Nora Harris were aware enough to refuse food, instead of passively accepting it, there would be no question.

“Do we listen to the previous Nora or to the current Nora?” Pope said. “That is, unfortunately, not legally or ethically answered well.”

A bill introduced in the Oregon Legislature last year would have allowed an appointed committee to amend the state’s advance-directive form. Critics, including Oregon Right to Life, an advocacy group, opposed the effort, arguing that it paved the way for mistreatment of vulnerable people, including dementia patients like Nora Harris.

“OR legislators move to allow starving, dehydrating the mentally ill,” one headline read. The bill passed the state Senate, but failed to advance.

Nora Harris’ situation also raises issues surrounding a controversial method of hastening death for seriously ill people known as “voluntarily stopping eating and drinking,” or VSED. It causes death through dehydration, usually in seven to 14 days.

VSED is being used by a small but growing number of determined patients with the help of their families, Pope said.

In Washington state, board members at End of Life Washington, a nonprofit that supports medical aid-in-dying, created an advance directive focused on people with dementia. Soon the group plans to release a new form for people who want to leave instructions for stopping eating and drinking at the end of life.

Medical experts say VSED can be a relatively painless, peaceful death. In the absence of nutrition and hydration, the body produces opiate-like substances that blunt hunger and thirst. With additional painkillers, comfort can be ensured, they add.

An analysis of VSED research concluded that “terminally ill patients dying of dehydration or starvation do not suffer if adequate palliative care is provided.” A 2003 survey of nurses in Oregon who helped more than 100 patients with VSED deaths said they were “good” deaths, with a median score of eight on a nine-point scale.

Unlike aid-in-dying laws or rulings now in place in six states, VSED doesn’t require a government mandate or doctor’s authorization.

But the question of whether people with dementia can authorize a VSED death in advance, to be enacted later, when they’ve lost the capacity to choose, remains legally uncertain, Pope said.

“We don’t have statutes, we don’t have regulations, we don’t have a court case,” Pope said. “We have this thing where you’re allowed to refuse medical care. But this is basic care. Are you allowed to refuse basic care?”

For now, the answer in the case of Nora Harris is no.

That’s frustrating for Bill Harris, who says the emotional — and financial — toll of her illness has been enormous.

“The person you know, the person you married, who you love, is basically going away, fading away before your eyes,” he said.

He had planned to retire from his job at Wells Fargo Bank at age 67 but worked an extra eight years to pay for the costs of Nora’s care, which total more than $80,000 out-of-pocket each year. Because she fell ill at age 56, she didn’t qualify for Medicare or other government help.

Worse, though, is seeing his once “extremely bright” wife wandering the halls of the assisted-living center, “like a zombie,” he said.

“Nora was quite enamored of Virginia Woolf,” Bill Harris said, referencing the British author who drowned herself after years of mental illness.

“If she had known this would happen, she would have put rocks in her pockets and jumped in the river. This is absolutely where she never wanted to be.”

Complete Article HERE!

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Medicare covers the cost of care-planning sessions

In 2016, the first year health-care providers were allowed to bill for an end-of-life consultation, nearly 575,000 Medicare beneficiaries took part in the conversations, new federal data obtained by Kaiser Health News show.

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[T]he 90-year-old woman in the San Diego-area nursing home was quite clear, said Dr. Karl Steinberg. She didn’t want aggressive measures to prolong her life. If her heart stopped, she didn’t want CPR.

But when Steinberg, a palliative-care physician, relayed those wishes to the woman’s daughter, the younger woman would have none of it.

“She said, ‘I don’t agree with that. My mom is confused,’ ” Steinberg recalled. “I said, ‘Let’s talk about it.’ ”

Instead of arguing, Steinberg used an increasingly popular tool to resolve the impasse last month. He brought mother and daughter together for an advance care-planning session, an end-of-life consultation that’s now being paid for by Medicare.

In 2016, the first year health-care providers were allowed to bill for the service, nearly 575,000 Medicare beneficiaries took part in the conversations, new federal data obtained by Kaiser Health News shows.

Nearly 23,000 providers submitted about $93 million in charges, including more than $43 million covered by the federal program for seniors and the disabled.

Use was much higher than expected, nearly double the 300,000 people the American Medical Association projected would receive the service in the first year.

That’s good news to proponents of the sessions, which focus on understanding and documenting treatment preferences for people nearing the end of their lives. Patients, and often, their families, discuss with a doctor or other provider what kind of care they want if they’re unable to make decisions themselves.

“I think it’s great that half a million people talked with their doctors last year. That’s a good thing,” said Paul Malley, president of Aging with Dignity, a Florida nonprofit that promotes end-of-life discussions. “Physician practices are learning. My guess is that it will increase each year.”

Still, only a fraction of eligible Medicare providers — and patients — have used the benefit, which pays about $86 for the first 30-minute office visit and about $75 for additional sessions.

Nationwide, slightly more than 1 percent of more than 56 million Medicare beneficiaries who enrolled at the end of 2016 received advance-care planning talks, according to calculations by health-policy analysts at Duke University. But use varied widely among states, from 0.2 percent of Alaska Medicare recipients to 2.49 percent of those enrolled in the program in Hawaii.

“There’s tremendous variation by state. That’s the first thing that jumps out,” said Donald Taylor Jr., a Duke professor of public policy.

In part, that’s because many providers, especially primary-care doctors, aren’t aware that the Medicare reimbursement agreement, approved in 2015, has taken effect.

“Some physicians don’t know that this is a service,” said Barbie Hays, a Medicare coding and compliance strategist for the American Academy of Family Physicians. “They don’t know how to get paid for it. One of the struggles here is we’re trying to get this message out to our members.”

There also may be lingering controversy over the sessions, which were famously decried as “death panels” during the 2009 debate about the Affordable Care Act. Earlier this year, the issue resurfaced in Congress, where Rep. Steve King, R-Iowa, introduced the Protecting Life Until Natural Death Act, which would halt Medicare reimbursement for advance-care planning appointments.

King said the move was financially motivated and not in the interest of Americans “who were promised life-sustaining care in their older years.”

Proponents like Steinberg, however, contend that informed decisions, not cost savings, are the point of the new policy.

“It’s really important to say the reason for this isn’t to save money, although that may be a side benefit, but it’s really about person-centered care,” he said. “It’s about taking the time when people are ill, or even when they’re not ill, to talk about what their values are. To talk about what constitutes an acceptable versus an unacceptable quality of life.”

That’s just the discussion that the San Diego nursing-home resident was able to have with her daughter, Steinberg said. The 90-year-old was able to say why she didn’t want CPR or to be intubated if she became seriously ill.

“I believe it brought the two of them closer,” Steinberg said. “Even though the daughter didn’t necessarily hear what she wanted to hear. It was like, ‘You may not agree with your mom, but she’s your mom, and if she doesn’t want somebody beating her chest or ramming a tube down her throat; that’s her decision.’ ”

Complete Article HERE!

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To Treat or Not to Treat: What Would Your Loved Ones Want at the End of Life?

Ensuring that the care you get reflects your wishes and values

By Family Health Team

[W]hen someone you love is hospitalized with a grave illness or injury, you may face decisions about their care.

Cardiopulmonary resuscitation (CPR), mechanical ventilation, tube feedings, surgery, chemotherapy or other interventions may add weeks, months or years to their life.

If your loved one has an advance directive (living will), it will spell out which interventions they want and don’t want. If they don’t have one and can’t speak for themselves, how should you proceed?

To help families learn to make good choices in this situation, Silvia Perez Protto, MD, Director of our Center for End of Life Care, answers key questions below. 

Q: What’s the first thing families should consider?

A: First, determine whether the patient is capable of making a decision about treatment. If so, your best option is to explore their wishes and values:

  • What are they expecting and hoping from treatment?
  • What are the trade-offs of treating versus not treating?
  • What risks are acceptable and not acceptable to them?
  • Which do they value more: quality of life or quantity of days?

Depending on their age, situation and views, answers will vary.

One paralyzed patient may be happy sitting with family and watching TV. Another may not.

One patient may want doctors to extend her life despite pain, nausea, or loss of mobility to see her son graduate from college. Another may be unwilling to experience serious side effects from a treatment that isn’t 100 percent effective.

We want to honor the patient’s wishes. When patients can’t communicate and have no advance directive, we look to families for guidance.   

Q: What’s the best way to start the conversation?

A: I encourage families to talk to loved ones about end-of-life wishes and values before they get sick or develop a serious condition. You won’t go wrong trying to explore someone’s wishes and values.

When I asked my own mother what she wanted at the end of her life, I learned she wanted to be around her five children, to be able to communicate with us and to be independent. This led me to understand that if she became terminally ill and couldn’t recognize us, she wouldn’t want to live like that.

Some people wouldn’t mind being on a feeding tube or a ventilator, unaware of their environment. Others wouldn’t want to live in a vegetative state.

These questions are tough and emotionally difficult to ask mom or dad. Even I got stuck talking to my mom. But we can always ask for help. A spiritual care advisor or palliative care doctor at your hospital can facilitate these discussions.

(And remember to tell loved ones about your wishes and values, too.)

Q: Do larger issues get in the way of these discussions?

A: I think not talking about death is cultural. It’s how we see life, it’s our spiritual background, it’s our own fear of dying.

I’ve heard patients say, “I feel like I’m dying, but my kids don’t want to talk about it.” This isolates them at the end of life. Pain and isolation or abandonment are our main fears when we’re dying.

But the more we talk, the less fear we’ll have. Everybody’s going to die. Avoiding the topic won’t decrease the chances of dying. As a society, we need to normalize death. Being born, growing up, having kids, dying – these are all part of the life cycle.

Q: What questions should you ask about end-of-life care?

A: If you’re worried how an illness may impact the end of your life, talk to your family doctor, primary care doctor or specialist. Ask, “What are the side effects, risks and benefits of the treatment you’ve recommended?” Once you have that information, see how it lines up with your wishes and values.

If you want your doctor to keep trying to treat the disease, we can provide palliative care along with the treatment, controlling your symptoms and minimizing your pain. If you choose to end treatment, it doesn’t mean we’re giving up. We’ll still provide palliative care right up until the end.

Our goal in the ICU is always to get patients better and back to a functional life at home. But that’s not always possible. We can aim either to extend life or to offer the best quality of life in the time the patient has left.

These conversations and advance directives show us how to proceed and help us allow patients to die with dignity.

Q: Are there proven benefits to end-of-life planning?

A: Yes. Studies show that when advance care planning is done, the family’s experience and the patient’s experience are better. In the United States, autonomy is very important. Advance directives help you maintain your autonomy at the end of life.

Healthcare providers are encouraged to obtain advance directives and document patient’s wishes in their chart for all caregivers to see.

Q: Any final word for families?

A: I encourage families to see death as a natural act and to understand the value of a natural death. We can do many things to extend life, but sometimes the price we pay is having no quality of life.

Complete Article HERE!