Tag: Advance Directives

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Straight From The Patient’s Mouth

Videos Can Clearly State Your End-Of-Life Wishes

By Judith Graham

[F]or 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.

Complete Article ↪HERE↩!

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Don’t want ‘heroic measures’ as part of your end-of-life care? Have the conversation

intubated patient in hospital, intubatation at intensive care unit room respiratory machine with oxygen ventilation monitor

By Allison Bond

[F]or one month this spring, my job as a senior resident in a large teaching hospital entailed racing around the hospital, managing patients who had rapidly become sicker; I wore running shoes every day. I also led every code, orchestrating a team of doctors, nurses, respiratory therapists, and pharmacists in an effort to resuscitate patients after their hearts had stopped. Some of the very sick patients under my care had do-not-resuscitate orders, but most didn’t. For them, my team and I provided whatever treatments we could.

One night, a colleague asked me to see Mr. S, a middle-aged patient with worrisome vital signs.

Arriving at his bedside, my colleague, Dave, and I saw a sluggish, pale man — he’d been in the hospital for almost a month with life-threatening infections. He answered my questions with brief but cogent statements until he suddenly stopped moving, his eyes staring blankly at the wall. I felt for a pulse. There wasn’t one.

“Call a code blue,” I said as calmly as I could, referring to the all-hands-on-deck alert that a patient’s heart had stopped. Dave began doing chest compressions, pressing rhythmically and firmly on Mr. S’s chest, taking the place of the heart in circulating blood throughout his body. I stood at the foot of the bed as the resuscitation team rushed in. A breathing tube wouldn’t pass down Mr. S’s windpipe, so a surgeon performed a cricothyrotomy, cutting a hole in the throat so we could insert a tube to help him breathe. As we paused chest compressions to check for a pulse, 15 wide-eyed faces looked to me to tell them what to do next. Although most in attendance had been involved in attempts to resuscitate patients before, the adrenaline-fueled brutality universal to codes is nearly impossible to get used to. Mr. S’s heart still wasn’t pumping, so we continued.

A few moments later, his arms flailed, thanks to the blood the chest compressions were sending to his brain and the rest of his body. The intern who had taken over for Dave paused in alarm. Another resident reassured her this simply meant her compressions were strong, and urged her to continue pushing.

After more compressions and injections of medicines to bring up the blood pressure and restart the heart, Mr. S’s began to beat faintly. Stable for the moment, we moved him to the intensive care unit. His prognosis was grave, so his family opted against future resuscitations. Later that day, his heart stopped again — that time forever.

We may have revived Mr. S, at least for a few hours, but I’m not sure we really helped him. Were our actions what he truly wanted?

Most people whose hearts suddenly stop don’t survive. Of the more than 200,000 Americans every year who go into cardiac arrest in the hospital, only about one-quarter make it out of the hospital alive. Of those, nearly 30 percent are seriously disabled.

Doctors often don’t adequately convey these grim outcomes; many patients remain falsely optimistic, tending to overestimate their chances of surviving a cardiac arrest. And few people understand what the resuscitation process truly entails, and how these efforts often lead to a painful, undignified death. Recent research also shows that patients and caregivers tend not to be on the same page when it comes to what level of disability or pain might be acceptable to a patient in the future, including after a code.

There’s got to be a way to close these gaps.

The solution starts with a conversation between doctors and their patients about what the end of life might look like. In an effort to make these discussions more common, Medicare now allows doctors to count such discussions, known as advance care planning, as a topic worthy of a doctor’s visit — and of reimbursement under a new billing code — if patients are open to it. Since this change took effect Jan. 1, 2016, nearly 575,000 patients and 23,000 providers have participated in such reimbursed conversations. Of course, there’s plenty of room for improvement: Although that’s almost twice as many conversations as predicted by the American Medical Association, it’s only 1 percent of all people enrolled in Medicare.

It may seem ridiculous to need to pay doctors to have these conversations. Yet given the myriad demands on doctors’ time, making this conversation reimbursable puts it on equal footing with measuring blood pressure, discussing an irregular heartbeat, and other topics long considered vital parts of a doctor visit. These conversations aren’t simply something that are nice to do; they are an incredibly important part of the way patients live and die.

Yet this initiative faces opposition by lawmakers whose fundamental misunderstanding of advance care planning risks seriously harming patients. One such example is the dangerously misnamed Protecting Life Until Natural Death Act, proposed by Rep. Steve King (R-Iowa) this past January. The bill calls for excluding end-of-life discussions from Medicare reimbursement, discouraging doctors from having these important conversations. That’s a problem because in the American medical system, the default position is to do everything possible to revive a patient unless he or she requests otherwise. And in reality, there’s nothing natural about a death prolonged by painful chest compressions, endless needle sticks, and a breathing tube forced down the throat, especially when such efforts are usually futile. In fact, some experts have proposed changing the term “do not resuscitate” to “allow natural death” to better reflect the realities of end-of-life care.

There’s no doubt heroic measures save some lives — but they aren’t what everyone wants. That’s why end-of-life discussions are essential for protecting patients and empowering them to make clear, well-informed decisions that let doctors do right by them. It’s absolutely vital that we keep these conversations going.

Complete Article ↪HERE↩!

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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.”

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