A Graceful Exit: Taking Charge at the End of Life

How can we break the silence about what happens when we’re dying?

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I was standing in my cubicle, a 24-year-old fact-checker envisioning a publishing career of glamor and greatness, suddenly shaking as I read the document my mother had mailed. It detailed her wish that I promise never to keep her or my father alive with artificial respirators, IV-drip nourishment, or anything else she deemed “extreme.”

I was horrified, and slightly angry. My mom was a 54-year-old literature professor who’d spent the 1970s eating whole grains and downing vitamins. She was healthier than anyone I knew. Why get so dramatic now? It seemed ghoulish, not to mention premature. But I scrawled my signature at the bottom of the page and shoved it into an envelope, my mother’s voice in my head, prodding me along.

As with the whole wheat and vitamins, my mother—back in 1990—was onto something long before it became conventional wisdom. But these days, Americans’ approach to aging and death is rapidly evolving, pushed both by the numbers and the grim reality behind them: In 40 years, 19 million Americans will be over 85, all at high risk of losing the ability to care for themselves or dwindling away because of organ failure, dementia, or chronic illness. (The days of a sudden fatal heart attack are fading; by 2008, the death rate from coronary heart disease was down 72 percent from what it was in 1950.)

So while many seniors now live vigorous lives well into their 80s, no one gets a free pass. Eating right and exercising may merely forestall an inevitable and ruinously expensive decline. By 2050, the cost of dementia care alone is projected to total more than $1 trillion.

My mom’s decision to face her end came not from any of these facts, but from the nightmare of watching her own mother’s angry decline in a New York nursing home. “You’re all a bunch of rotten apples,” Grandma growled at visitors, the words erupting from her otherwise mute lips. And there she sat for three years, waiting to die. “Why can’t you just get me some pills so I can go?” she would sometimes wail.

The slide toward death was only slightly less awful for my father’s mother. Grandma Ada would greet me with a dazed smile—though it was impossible to know whether she recognized the person standing in front of her wheelchair—before thrashing with involuntary spasms. An aide would come to restrain her, and then my dad and I would leave.

This cannot be right. This cannot be what we want for our parents—or ourselves.

In denial

Despite our myriad technological advances, the final stages of life in America still exist as a twilight purgatory where too many people simply suffer and wait, having lost all power to have any effect on the world or their place in it. No wonder we’re loathe to confront this. The Patient Self-Determination Act, passed in 1990, guarantees us the right to take some control over our final days by creating advance directives like the one my mother made me sign, yet fewer than 50 percent of patients have done so. This amazes me.

“We have a death taboo in our country,” says Barbara Coombs Lee, whose advocacy group, Compassion & Choices, pushed Washington and Oregon to pass laws allowing doctors to prescribe life-ending medication for the terminally ill. “Americans act as if death is optional. It’s all tied into a romance with technology, against accepting ourselves as mortal.”

For proof of this, consider that among venture capitalists the cutting edge is no longer computers, but life-extending technologies. Peter Thiel, the 45-year-old who started PayPal and was an early investor in Facebook, has thrown in with a $3.5 million bet on the famed anti-aging researcher Aubrey de Grey. And Thiel is no outlier. As of 2010, about 400 companies were working to reverse human aging.

Talking about death

The reason for this chronic avoidance of aging and death is not simply that American culture equals youth culture. It’s that we grow up trained to believe in self-determination—which is precisely what’s lost with our current approach to the process of dying. But what if every time you saw your doctor for a checkup, you’d have to answer a few basic questions about your wishes for the end of life? What if planning for those days became customary—a discussion of personal preferences—instead of paralyzing?

Dr. Peter Saul, a physician in Australia, endeavored to test this approach by interviewing hundreds of dying patients at Newcastle Hospital in Melbourne about the way they’d like to handle their lead-up to death—and how they felt discussing it. He was startled to find that 98 percent said they loved being asked. They appreciated the chance to think out loud on the subject. They thought it should be standard practice.

“Most people don’t want to be dead, but I think most people want to have some control over how their dying process proceeds,” Saul says in his widely viewed TED lecture “Let’s Talk About Dying.”

Nevertheless, when his study was complete, Newcastle went back to business as usual, studiously ignoring the elephant in the room, acting as if these patients would eventually stand up and walk out, whistling. “The cultural issue had reasserted itself,” Saul says drily.

Slow medicine

It’s hardly surprising that medical personnel would drive this reexamination of our final days. Coombs Lee, who spent 25 years as a nurse and physician’s assistant, considers her current advocacy work a form of atonement for the misery she visited on terminal patients in the past—forcing IV tubes into collapsed veins, cracking open ribs for heart resuscitation.

“I had one elderly patient who I resuscitated in the I.C.U., and he was livid,” she says. “He shook his fist at me, ‘Barbara, don’t you ever do that again!’ We made a deal that the next time it happened we would just keep him comfortable and let him go, and that’s what we did.”

It bears pointing out, however, that many doctors dislike discussing the ultimate question—whether patients should be allowed to choose their moment of death by legally obtaining life-ending medication. Several have told me that the debate over this overshadows more important conversations about how to give meaning to what remains of life. In Europe, the term of art is euthanasia—the practice of injecting patients with life-ending drugs—which remains illegal in the United States. But whatever the method, many physicians would prefer to avoid the entire topic.

“I don’t think euthanasia matters,” Saul says. “I think it’s a sideshow.”

While arguments flare around this, Dennis McCullough, a geriatrician in New Hampshire, has noticed a quieter answer taking shape among his own patients. Many are themselves retired doctors and nurses, and they have taken charge of their last days by carefully mulling the realities of aggressive medical intervention. Rather than grasping at every possible procedure to stave off the inevitable, they focus instead on accepting it. In place of scheduling never-ending doctor’s visits, they concentrate on connecting with others.

McCullough has termed their philosophy “slow medicine,” and his book about it, My Mother, Your Mother, is starting to attract attention around the world.

“If you go to a doctor to get a recommendation for having some procedure, that’s probably what’s going to happen. Doctors are driven by revenue,” he said in an interview. “But many of the things that we can do to older people don’t yield the results we’ve promised—medicine can’t fix everything. ‘Slow medicine’ is being more thoughtful about that and staying away from decisions based on fear.”

This attitude is gaining traction. In November, several hundred physicians plan to gather in Italy to discuss slow medicine (a name lifted from the similarly anti-tech slow food movement), and McCullough’s book is being translated into Korean and Japanese.

“What’s the last gift you’re going to give your family? In a sense, it’s knowing how to die,” he says. “Staying alive is not necessarily the goal.”

Death with dignity

I consider my mother-in-law, a practicing Catholic and right-leaning political moderate, a barometer for this slowly shifting national consciousness. She is in her mid-60s and healthy, but has already written directives specifying that Bach be played at her bedside and perfume scent the air, if her health deteriorates to the point where she cannot say so herself.

Personally, I’m relieved. Unlike my 24-year-old self, I now find it comforting to plan these things, rather than living in fear of them. But I would still be mired in denial were it not for former Washington Gov. Booth Gardner, whom I wrote about in 2008 when he was pushing for a Death with Dignity law and I was a newspaper reporter.

Shaking with Parkinson’s disease, he tried to spark conversation about legalizing physician-assisted aid-in-dying while attending a luncheon in downtown Seattle with a small circle of business friends: “I have a real tough time understanding why people like us, who’ve made tough decisions all their lives—buying, selling, hiring—do not have the right to make such a fundamental decision as this,” Gardner said, referencing his wish to take life-ending medication when his illness becomes unbearable, to gather his family and die when he chooses.

The men sipped their soup. They did not approve. They did not even want to discuss it. Yet that stony opposition—which mirrors the position of the Catholic church, groups representing the disabled, and hospice workers dedicated to maintaining “studied neutrality”—has, ironically, begun to nudge talk of death into the open.

Gardner, to my mind, had articulated the central concern: Wherever you come down on end-of-life decisions, the question is one of control—and who is going to have it over our bodies at the last moments.

Thus far, only Washington and Oregon have passed Death with Dignity laws, though a voter initiative is scheduled for the November election in Massachusetts. In Montana, the courts have ruled that physicians who prescribe life-ending medication for the terminally ill are not subject to homicide statutes; in New Mexico, two doctors have filed a suit challenging prohibitions against “assisting suicide.” And in Hawaii, four doctors willing to prescribe life-ending medication have geared up for a similar fight.

Yet after 15 years of legalized aid-in-dying in Oregon, the biggest news is how seldom people actually invoke this right. Since 1997, fewer than 600 terminal patients have swallowed doctor-prescribed drugs hastening their ends, though 935 had prescriptions written. Did 335 people change their minds at the last minute? Decide in their final days to cling to life as long as possible?

If so, that might be the best thing to come out of Compassion & Choices’ campaign: a peace of mind that allows us to soldier on, knowing we can control the manner of our death, even if we never choose to exercise that power.

My own immediate family ranges in age from 3 to 84, and I envision a dinner in the not-too-distant future when we will gather, talk about how to make my parents’ final journey as meaningful as all that has come before, and raise a glass to the next stage. Maybe at Thanksgiving.

Complete Article HERE!

How to Properly Prepare for End of Life Care

Sometimes death comes like a thief in the night. Other times, there’s a slow and clear buildup. In the latter scenario, one of the benefits – if you can even call it that – is that you have time to prepare for the end of your life.

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Preparing for Your Final Chapter

At some point, it may become clear that whatever healthcare, treatments, medication, or procedures you’re pursuing to prolong your life are no longer effective. You may also come to realize that they’re doing more harm than good – robbing you of the opportunity to enjoy what time is left. When these revelations become clear, the best thing you can do is stop and focus on your quality of life.

As sobering as it is to accept, you will eventually pass on. And either you pass on without any purpose or plan – leaving the burden to your loved ones – or you can take the time to prepare for the end of your life and, in the process, provide a greater sense of closure for everyone involved.

Everyone’s end of life care situation will be different, but here are some suggestions to help you approach this sensitive and emotional time with poise:

1. Have Important Conversations

The first step is to have the right conversations with the right people. When you decide to stop seeking treatment or pursuing certain healthcare options that are designed to extend your life, it’s important that people know.

Your family needs to know that you’re dying – not so that they can feel sorry for you, but so that they may process it in a healthy manner. These conversations are more for your loved ones than they are for you. Set aside some time to speak with parents, siblings, grandchildren, close friends, mentors, etc. You don’t have to be overly sentimental or wise – just be yourself. Honesty will go a long way.

2. Make Your Wishes Known

Now’s the time to make your wishes known. If you’re currently in a nursing home, hospital, or another care facility, it may be wise to move back home. This will lessen your chances of receiving poor care from a staff that may neglect certain important needs. Instead, you can receive personalized care from your loved ones (who are more likely to respect your wishes).

If you haven’t already done so, now’s also a good time to designate a trusted loved one to make medical decisions on your behalf.

“This person, called your healthcare proxy or medical power-of-attorney, is the person who you know will make decisions the way you want them made and who can most easily stand at your bedside, if necessary,” patient advocate Trisha Torrey writes. “Your proxy will need to make decisions for you if you are in a coma, have a sudden heart attack or stroke, experience another debilitating event, and can’t speak. In addition to your primary representative, you’ll want to designate who your second choice representative should be.”

If there are specific details that are important to you, make these clear as well. For example, some people only want certain individuals present when the time comes for them to die. Other people don’t care. Speak your mind now so that you have the chance to die on your terms.

3. Get Financial Matters in Order

Hopefully you already have a last will and testament drafted. If you don’t, go ahead and do so. This will allow you to direct your finances and assets to the right people. It also saves your heirs from having to deal with the legal fallout of an estate that hasn’t been properly accounted for.

4. Secure the Right Burial Arrangements

Finally, be sure that you establish and document your burial arrangements prior to your passing. This is one less thing your family has to worry about. It gives them the opportunity to grieve properly, rather than hurrying around to figure out administrative details.

Leaving With Grace and Dignity

You will leave a legacy when you die. Whether this legacy is positive or negative remains to be seen. By preparing for the end of your life with purpose and dignity, you’ll increase the chances of passing on a legacy that people are happy to attach themselves to. Take some time to think about your wishes and how they can be executed tastefully.

Complete Article HERE!

Comparatively few African Americans make end of life plans

By Glenn Ellis

The entire lifespan of most African Americans is consumed by efforts to overcome obstacles, inequality, and in many cases, institutional racism.

The most difficult point in this most tiring journey is often the end-of-life. For the disproportionate number of us is when death is accompanied by the dilemmas around how we choose to die.

Hospice; Palliative Care; Advance Directives; and Compet-ency become terms that we, or our loved ones, all of a sudden are faced with and expected to deal with.

Studies and observations show that, likewise disproportionately, we are not prepared for this final stage of life.

What we know is that African Americans are less likely than any other group to be prepared for end-of-life, and not surprisingly, are less likely to have a prepared Advance directive.

First, let’s talk about Advanced Directives. This is the document that should be prepared to outline, in detail, what type of care (if any) we desire as our lives come to an end, and we are not able to make decisions for ourselves.

An Advanced Directive includes things that typically are not even thought about during times when life is good.

Generally, it will include things such as a living will or do-not-resuscitate order, or in identification of a health care surrogate. Regrettably, it’s not until we are in a hospital ICU; Hospice Center; or even on Home Hospice that we (or our loved ones) are confronted with having to make difficult decisions, while dealing with imminent death.

In spite of the fact that studies show that 80 percent of Americans would prefer to die at home, the reality is that 60 percent of us will die in a hospital; 20 percent of us will die in a nursing home; and only 20 percent will end up in a situation where we will be able to make our transition in the comfort and peace of our own home.

If you are not competent, or capable, to make medical decisions but do not have an advance directive, or it is unavailable when needed, decisions will nevertheless have to be made.

In 2013, The Pew Foundation did a study and found that while 73 percent of all Americans have given “some thought” to end-of-life, only 37 percent of African Americans have done the same. This means that doctors and others on the care team of a terminally-ill patient may decide to continue providing care and treatment, when you may feel that your loved one has had enough, and should be allowed to die in peace, with dignity. In the absence of an Advance Directive, this could become a point of contention, and the patient is caught in the middle. Or, it could be the other way around, you may feel that there is still hope for a recovery, and the doctors feel that there isn’t. Again, the patient lies there in limbo, and often suffering unnecessarily. For African Americans, it’s worse. One study found that only 13 percent of all African Americans have an Advance Directive in place.

It can be a difficult, and often, an uncomfortable conversation, but collectively, we have to begin to have conversations during the “good” times in life with our families and loved ones about what we do and don’t want should we ever find ourselves in a position where we are unable to make medical decisions for ourselves.

Think about how often we attend funerals, and families are still reeling over how things came to an end with conflict and contention between families of a patient who died, and the medical staff at the hospital. Think about how different it would be if we made our wishes known, before something happened unexpectedly.

A few things that may be helpful for you in getting an Advance Directive for yourself:

First you need to familiarize yourself with the term: life-sustaining treatments. Nolo’s Plain-English Law Dictionary defines this as “Medical procedures that would only prolong the process of dying or sustain a condition of permanent unconsciousness. A patient who is receiving life-sustaining treatment will die soon, whether or not treatment is administered. Life-sustaining treatment may include a respirator, cardiopulmonary resuscitation (CPR), dialysis, surgery, and other medical procedures.” Would you want any of these? If so, under what circumstances?

Most importantly, let your loved ones know what you have in your Advance Directive. People only like surprises for their birthdays. Don’t wait for them to find out at an emotionally difficult time, when they are grappling with the inevitability of your death.

You don’t need a lawyer to create your Advance Directive. But you do need to make sure you understand the laws of the state you live in regarding Advance Directives. Some states have restrictions that you need to be aware of that may prohibit your wishes.

Complete Article HERE!

The Case for Advanced Directives

By Aldis Petriceks

Five minutes. That is all I had to make my case: to convince this 80-year-old man to fill out an advanced care directive. John, as I’ll call him, had served in the military for over thirty years, risking life and limb for his country. Many times he came close to death, suffering fractures and blast injuries and witnessing the raw, unfiltered trials of war. He retired as soon as his pension kicked in, and hadn’t worked in over 25 years.

Neither had he paid much attention to his health. Once, he had a loving wife and two children, and was concerned with his body—how it would hold up to the wear and tear of aging. But his wife had passed away ten years earlier, and his children were now estranged. John lived alone in his house, lonely and unemployed. And so his hypertension, coronary artery disease, and chronic kidney disease no longer delivered the same existential fright. All John wanted to do was sit in his home, away from others. And that is what he did.

Then, two months prior to our meeting, he was hospitalized with pneumonia. Weeks later, he was hospitalized again. And again. And a fourth time in two months, despite a week-long stay involving critical care and mechanical ventilation just days beforehand. He was running a fever, and his breath was labored. He lost his appetite and control of his bowels. The combination left John nutritionally shortchanged, and his medical team was forced to place a feeding tube directly into John’s stomach, passing straight through his abdominal wall.

Yet for all this treatment, John’s prognosis wasn’t looking any brighter. Lab tests returned with clear signs of malnutrition and vitamin deficiencies; they also suggested possible liver disease. And while John passed his cognitive exams, he was diagnosed with mild depression. But all he could tell the medical staff was how he had “been through so much worse”—and how he just wanted to go home, get away from the beeping and humming hospital, and be done with it.

Three minutes. All these facts and histories left me with one general, almost blanketed feeling: John was not going to live much longer. If John really wanted to go home, if there was really some way in which we could do right by him, we had to act now.

I was sitting face-to-face with the man. It was as if his tired, tumultuous medical history—like some solemn but unexpected musical score—was playing before me with a surprising timbre. One might have thought that this military man would want to fight, would need to fight—but the opposite was true. He was just plain tired. Tired of the hospital, tired of the doctors, tired of the medications, tired of the tubes in various orifices, natural and artificial. John just wanted to go home.

Ninety seconds. I had spent most of the conversation probing John’s mind, trying to find what mattered to him. I asked him what his understanding of his illness was. I asked him what concerns he had. I tried to uncover his goals, his priorities. Then: which outcomes were unacceptable? Which compromises seemed favorable? And ultimately, what did a good day look like?

Forty-five seconds. John had answered all my questions. Yet I realized that, for all my probing, I was still beating around the bush. John was probably not going to live much longer; and if we didn’t take initiative, he might live the rest of his life bouncing in and out of hospitals—a prospect he abhorred.

But how could I ensure that John wouldn’t return to the hospital for treatment he didn’t want? Thirty seconds. The answer was simple, stupefying: an advanced directive. With John’s advanced age and complex medical history, he needed something to explicitly convey all that he had just told me. His concerns, his goals, what was unacceptable, what could be compromised: if these were written down, John would stand a markedly better shot of living—and yes, dying—on his own terms. So I spent the last half-minute of our conversation describing the advanced directive form, highlighting its purpose and importance. He seemed uncertain, suspicious at first. Was I telling him that he would die? But he soon realized that, in reality, this form was not about his death. It was about his life, and what he did and did not want if something were to happen to that life. I saw a spark of change flicker across his eyes, as he looked down at the form I had handed him.

Then time was up, and John—the 80-year-old war veteran, the man with pneumonia and cardiovascular disease—transformed into a young, presumably healthy woman, as the two of us chuckled at the change. But what had just transpired was not fiction—not quite, at least. What had transpired was the enactment of a timely, crucial endeavor for our modern healthcare system.

Since the start of the new year, I’ve been participating in a weekly seminar at Stanford’s medical school, focused on difficult conversations surrounding serious illness. My motivations are simple: as a future physician, I face countless difficult conversations ahead, many of which will reveal my profound incapacity to guide another human being through the sufferings that they, and not I, experience. That is—I will be incapable, if I don’t come prepared.

So I was excited for the seminar’s second session, held a few weeks ago, on advanced care directives. On their surface, advanced directives are quite simple: legal documents dictating how a person’s health care decisions should be made, if that person becomes incapable of making those decisions. But what sorts of decisions are specified? How does one fill this document out? And what role do healthcare professionals have in the process?

The questions pulsed through my mind as I spoke with “John”—a character, essentially, played by a classmate who had read a fictional case report before class. (The case, nonetheless, was based on actual patients.) My job, playing the role of medical professional, was to help John understand his situation, his fears, his desires. That’s it. Even though we had spent the first half of class learning about advanced directives—their benefits and shortfalls—I was under no agenda to push this document in his face. Or at least that’s what I thought.

When I actually got to speaking with John—portrayed in Oscar-worthy fashion—I realized that I could not separate his situation, his fears, his desires, from the value of an advanced directive. As many families already know, things become messy at the end of life. Questions abound about the intensity of treatment, the continuation or refusal of care, the proper setting for one’s last days. These questions can be difficult for patients themselves; even those who have plenty of time to think. Now imagine a family, deciding in a split second whether or not the medical team should resuscitate their 80-year-old grandfather (or whoever it may be), without any prior guidance. Or, think about someone bouncing between home and hospital for the last few months of their lives. Assuming they were cognizant enough to be aware of the situation, what would they think?

They might hate their last days. Or, they might want things that way. This is the exact problem: without advanced directives, we simply don’t know. So when I read through John’s case before class, and when I met the “real” person before me, I couldn’t get these documents off my mind.

But what are these documents? For all the largeness and complexity of life and death, advanced directives are rather simple. Though a wide variety of different forms exist, two components are almost always included: the Durable Power of Attorney for Health Care (DPAHC), and the “living will.” In the DPAHC section, one lists an individual (and alternates) to make one’s medical decisions in the scenario that one is no longer capable of doing so. The “living will” section complements the DPAHC, providing specific instructions for things like prolonging (or not prolonging) life, and when (if ever) pain-relieving medication should be withheld. There is usually room in this section for “other wishes”—for example, the wish that one never be intubated. In the form used for class (which is also the form used in Stanford Hospital), sections followed pertaining to organ donation, designation of a primary physician, and witness statements. The entire document was only 5 generously-spaced pages, and there was no jargon. In the first half of class, I filled out my own advanced directive in fifteen minutes.

The form is valuable and simple. But there are still problems to overcome. For one thing, a recent study found that only 37 percent of Americans currently have advanced directives. This is in spite of a resurgent national conversation on end-of-life care, and new Medicare reimbursement for physicians who provide advance-care counseling. And while older adults are more likely to have advanced directives (particularly those in hospice care), no demographic has even approached comprehensive advance-care planning. Americans with chronic illness, for instance, have a 38.2 percent advanced directive completion rate—compared to 32.7 percent in healthy individuals. As one physician told Reuters, “The fact that only a third of sick patients are expressing their end-of-life wishes means we’re in trouble.”

There is clearly some gap, some pitfall, which has stifled the full potential of advanced directives. And as I learned while talking to “John,” that pitfall sometimes sits right in the middle of the doctor’s office.

Even after a lecture on advanced directives, I had struggled to communicate the relevance of these documents to a tired and cynical man. (Even if he was, in reality, a driven young woman.) I found myself struggling with his worries: that this form would take away his independence, that he was signing up to die. But thankfully, these same worries provided a key entryway to John’s desires and values. For advanced directives are, in truth, a declaration of one’s independence. They can be changed or revoked at any time, and superseded by a patient’s spoken or written word. The DPAHC can be restricted to certain decisions, allowing the patient final say in others. If this hypothetical man was tired of the hospital, burdened by the strangeness and beeping of intensive medical care, the advanced directive was one way to reclaim control.

The five minutes of role-play ended with a debriefing between my classmate and I. We chuckled over our thespian shortcomings, and the awkward unnaturalness of the first few minutes. But the lessons learned were no joking matter. We were both future physicians, preparing to serve an aging population—most of which had not thoroughly planned for the end of life. One document was not going to solve this problem, but it was a good place to start. The implications were thus clear as the seminar ended and we waddled off to lunch. My classmates and I would have to understand these forms, understand how we might talk about them with patients of all ages and activity levels. We would have to understand the rhythms of inpatient and outpatient care—how and when one might talk to patients about these forms. But most of all we would have to understand people, their goals, their fears, and what matters to them.

We will have much longer than five minutes to prepare. But our duty is urgent, and we must learn to make our case.

Complete Article HERE!

Talking about advance directives is a perfect holiday conversation

By Kenneth R. White

Until Louisa’s accident, you could almost always find her working in her garden, pulling weeds, deadheading old blossoms, coaxing tomato vines up their stakes. Well into her 80s, she still made a full midday meal every Sunday for her family and an ever-shifting gaggle of neighbors, grandchildren, and friends — basically anyone who showed up hungry.

As vigorous as Louisa was, when she stumbled and fell earlier this fall, it changed everything. Landing awkwardly on the hard ground, her skull hit a paving stone, causing bleeding inside her brain that led to immediate unconsciousness. After Louisa was rushed to the local hospital, she underwent emergency surgery, but it yielded no improvement. Still unresponsive, she was transferred to a quaternary academic medical center for further evaluation and treatment. But there was nothing more to be done.

As her garden hibernated beneath piles of dead leaves and bits of snow, no one could believe this had happened — or imagine life without Louisa. The 180-degree pivot from healthy and upright to comatose left them breathless.

Family members encircled the hospital bed where she lay: broken bones set, minimal brain activity, a machine breathing for her. I asked them whether Louisa had an advance directive or a living will. Their silent stares were my answer.

It’s not an unusual situation, and they weren’t alone in saying no. In Virginia, where I live and work, nearly 5 million adults don’t have advance directives, including many of the patients I care for at the University of Virginia Medical Center. Nationally, a whopping two-thirds of Americans lack them. But this holiday season, it’s my hope to start to change those odds.

Advance directives are formal declarations of your last wishes, should the unthinkable — a fall, stroke, car accident, aneurysm, heart attack, or other incapacitating event — befall you. They explicitly lay out the extent to which you want lifesaving measures (breathing and feeding tubes, resuscitation if your heart stops, and the like) when other remedies won’t improve your odds of survival; or when, as with Louisa, there isn’t anything more than can be done and you will likely face your remaining days in an unconscious, possibly vegetative state.

In my practice as a palliative care nurse practitioner, in my classes teaching nursing and medical students, and even when I share meals with friends, I often work advance directives into the conversation. Some people twist in their seats, fumbling through their answers, while others are curious and upfront about what they do and don’t know. Still, I press.

I keep a stack of “Five Wishes” worksheets — a simple pen and paper guide to creating an official advance directive — in my office, car, briefcase, even in the guest rooms of my home (Harvard Health Publications, AARP, and others also offer them). And if I don’t have the paper copies on hand, a quick email later and my friend, colleague, student, patient, or family member has what’s needed to get started.

Advance directives get a lot of bad press for being macabre. But I urge you to think of them as love letters to the people you adore. In these documents, you define your last wishes, set parameters for care, and help those who will be caring for you make decisions based on what you want and, just as important, what you don’t want, when curative treatments are off the table.

These love letters safeguard those thrust into the difficult position of making medical decisions for you — some about life and death — so they don’t have to be guided only by well-meaning strangers like me, as Louisa’s family and countless others have had to do.

Advance directives are easy. They don’t take long to complete. Anyone can create them.

As families gather for the holidays, fretting about food, finances, gift giving, politics, and more, I urge them to ask everyone around the holiday table — middle-aged, old, young at heart, and everywhere in between — the following questions. (They’re the same ones I ask my patients who find themselves at various stages in the trajectory of life-limiting illnesses, bringing into razor-sharp focus what matters in the time they have left.)

  • What would you want done for you if the unthinkable happened — like a catastrophic fall or a major stroke — and treatment options are limited?
  • Would you want every medical intervention, or only some?
  • Do you want to die in a hospital or, if it’s possible, at home?
  • Are there things undone you wish to tend to, people you want to see, and things you want to say?
  • Are there things you fear, wonder, or wish for?
  • Essentially, what really matters to you?
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    When death is imminent, perhaps a matter of days or weeks, patients I’ve had the privilege of caring for often want to leave the hospital and spend their final days in a favorite chair, with a favorite pet, satisfied by favorite meals in the comfort of their own home. Others wish to express their love and gratitude for those around them, imparting last thoughts with purpose, dignity, and humanity. Some want to connect with a loved one with whom they’ve sparred.

    To do any of this, they need to declare their intent.

    No one needs to wait until death is near to understand or crystallize their last wishes. There’s no time like the present — and no time like the holidays, when family and friends gather — to ask those you love, as well as yourself, about what they want the end of their life to look like, no matter whether that day seems far away or if it might be closer.

    The only way to find out is to ask.

End Of Life Planning:

It Won’t Kill You

By Sara Zeff Geber

If you are over 50 and reading this, you have probably done some end-of-life planning. No? Time to get to work. You made a will 15 years ago? Not good enough. If you haven’t done anything or haven’t reviewed your planning in over five years, read on.

The key components of end-of-life planning are:

  • A will
  • A power-of-attorney for finances
  • A power-of-attorney for health care
  • An advance directive for health care
  • A trust for your assets

I am not an attorney, so I am not going to go into any depth about these legal documents. My intention is to rouse your interest in doing end-of-life planning by telling you about some novel and inventive ways to enhance it. So, even if you have done the basic planning with your estate attorney and have the documents on record, there are some new and interesting twists today that you may want to know about.

Traditionally, when the topic of end-of life planning comes up, the first item that comes to mind for most people is a will. If you are just beginning this journey a will is a good place to start and you may not need an estate planning attorney to take this first step. There are a number of online tools today for building a will, and some of them are so robust you may only need a couple of witnesses rather than an attorney.

FreeWill.com is one of the newest players in this space. Founded at Stanford University and launched in 2017, FreeWill (in the company’s description) “provides high-quality, intuitive online estate planning tools at no cost to the consumer.”  The founders, Patrick Schmitt and Jenny Xia, are young entrepreneurs with experience in finance and technology.

Several years ago, Patrick, who has a background in nonprofit fundraising and technology for social impact, was about to travel to areas that were not particularly safe for Americans. He decided the prudent thing would be to make a will. In doing so, he discovered that the process was more complicated and difficult than it needed to be, especially if one wanted to include any kind of planned giving to a non-profit. That event became the impetus for starting his company, FreeWill.com.

FreeWill strongly supports the inclusion of planned giving and it is built in to their will-creation software. Through their own research, they have discovered that single people are more than twice as generous as any other group when writing a will and single people who choose to leave a bequest are the most generous (2.5 times more than married people). FreeWill reaches out to singles through their marketing and because I often write about solo agers they reached out to me to help them spread the word.

I tried the online will creation form and discovered it to be very simple and straightforward. It took me less than the 20 minutes they suggest. Once I had completed the online form, I had the option to print it. Printing is necessary because for a will to be legally binding it must be signed by the principal and also by two witnesses. Then it can be kept stored in a safe place, including cloud storage. For larger, more complex estates, FreeWill suggests pairing the effort with a visit to an attorney and they provide the forms for doing just that. FreeWill will be rolling out additional end-of-life forms. A health care directive and a durable power-of-attorney are in the works.

An often-overlooked piece of end-of-life planning is the disposition of your remains after you have passed. I think many people have an even harder time facing this question when they are still healthy and strong, but making these plans ahead of time is one of the kindest gestures you can make for the loved ones you leave behind.

When I was still in my teens, my divorced father, age 55, purchased a burial plot and picked out a casket. He wanted to take me to see the burial park and the plot. I resisted, but he eventually wore me down and we went to visit the cemetery. About 15 years later, he created very specific plans for where he wanted his memorial service and who should be invited. Again, I resisted his efforts to share these plans with me, but he insisted. In addition to telling me, in great detail, what he had in mind for the burial service and the memorial, he also showed me where he kept all his important papers and took me to the bank to show me how to open the safe-deposit box where he kept some gold coins and other valuables.

It upset me to think about him dying; he wasn’t sick at the time and I couldn’t figure out why he was making all these seemingly-premature plans. Of course, years later he did die and it was fairly sudden. Amidst the shock of his passing I realized I did not have to make any decisions; all I had to do was put his plans in motion. It was the greatest gift he could have given me.

My father chose to be buried.  Now, thirty years later, my husband and I have chosen cremation and having our ashes scattered at sea near our Northern California home. The Neptune Society and the Trident Society (both subsidiaries of Service Corporation International) have pre-need programs for cremation. There are other cremation programs, but these two have been around the longest and that seemed important for a decision like this. They both have 5-year financing plans and other payment options.

There is also a green burial option today that may be appealing to you if you are concerned about traditional burial’s impact on the environment and use of open space.

As with so many later-life concerns, baby boomers are changing the landscape at the end of life. I think we can expect to see many more new concepts arise in the next two decades as this large population cohort enters the final decades of life.

Complete Article HERE!

LGBT seniors grapple with end-of-life issues

by Matthew S. Bajko

While enjoying her seventh decade on the planet, Donna Personna knows her remaining days are numbered. Yet the prospect of her demise doesn’t scare her.

“The end question. ‘The end.’ It’s not a touchy subject for me. I’m irreverent,” said Personna, a transgender woman who grew up in San Jose and now lives in San Francisco. “I have been on the planet for 72 years. I learned long ago this was going to come.”

Personna, a beloved drag performer, playwright, and hairdresser, credits her Mexican heritage with teaching her that death is a part of life. She pointed to the annual Dia de los Muertos holiday — the Day of the Dead in early November — as one example of how, from an early age, she was taught to embrace one’s mortality rather than fear it.

“I am not worried about it. It doesn’t scare me,” said Personna, who graduated with honors from San Jose State University and, for years, owned her own hair salon in Cupertino, which she sold a while back but continues to cut hair at once a month for longtime clients.

Born into a large Baptist family with 16 siblings, Personna remains close with several of her older brothers and their families in the Bay Area. She is confident she can rely on them in the case of emergencies or if her health deteriorates.

“Some of my nieces said, ‘You can live with us,'” said Personna, who has designated one of them the beneficiary of her estate.

Her Plan B, however, is to move into a pueblo outside Guadalupe, Mexico where her Social Security check and personal savings will be worth more.

“I want to spend the rest of my days in Mexico. I don’t want to die in San Francisco,” said Personna. “I am longing to go there.”

Confronting the end of one’s life isn’t easy for the majority of seniors, whether LGBT or straight. Most have not declared an executor for their estate, let alone discussed with their physician what sort of care they want in their dying days.

“It is rooted in the death phobia that North American culture has,” said Brian de Vries, a gay man and professor emeritus of gerontology at San Francisco State University who is a leading expert on end-of-life issues among LGBT seniors.

There are an estimated 2.7 million Americans who are LGBT and 50 years of age or older. Of that age group, 1.1 million are 65 and older. By 2060 LGBT elders in the U.S. are expected to number more than 5 million.

This generation of LGBT seniors differs from its heterosexual counterpart in significant ways, according to aging experts. Most of the LGBT seniors experienced discrimination not only in their day-to-day lives but also in medical settings due to their sexual orientation or gender identity.

LGBT seniors are oftentimes no longer in touch with their birth families, having been ostracized after they came out of the closet. And many don’t have a partner, spouse, or children of their own to rely on as they age.

“The issues around aging alone are particularly meaningful in LGBT seniors,” said Lisa Krinsky, 55, a lesbian who is the director of the LGBT Aging Project at the Fenway Institute in Boston.

And in the case of many older gay men, they lost their families of choice, whether it was their friends, partners, or spouses, to the AIDS epidemic. Thus, they are more likely to be aging alone. And if they are living with HIV, they are largely unprepared for their retirement years having believed they would have died by now.

Dearth of research
For LGBT seniors, living alone “sets them up to more likely need institutional care as one gets older,” said Daniel Stewart, a doctoral student and adjunct professor at Saint Louis University in Missouri.

Stewart and his colleague, Brandy Fox, a Ph.D. student at the university’s Center for Health Care Ethics, presented their research on LGBT older adults’ end-of-life perceptions and preparations at the Gerontological Society of America’s annual conference, held last month in Boston.

“There is not a lot of research on LGBT end of life,” noted Stewart.

Talking about the end of one’s life can be exceedingly difficult for LGBT seniors, according to aging experts, because of their lack of trust in their health care providers or not having close familial or social connections, leaving them without a family member or friend they can turn to and discuss how they want to be cared for as they age.

“We know gay and lesbian seniors delay getting care,” said Kysa M. Christie, Ph.D., a clinical psychologist at the Veterans Affairs Boston Healthcare System during a panel at the aging conference focused on palliative and end-of-life care for LGBT older adults.

The reasons can vary, said Christie, from internalized homophobia and heterocentrism to stress-related stigma and poverty. It is estimated that one in five LGBT seniors, she said, “have no one to call in a crisis. Compare that to one in 50 for heterosexual seniors, so that is a stark difference.”

Fox and Stewart interviewed 17 LGBT seniors living in the Midwest about end-of-life issues. The cohort expressed concerns about being a burden as they aged and largely had unfavorable views of health care settings, particularly religious affiliated hospitals.
As one 78-year-old woman told the researchers, “Me and the medical profession do not get along,” recalled Fox.

De Vries and his colleagues in the field of LGBT aging call the lack of discussions about one’s palliative care needs, from who will be one’s power of attorney to what a person’s advance directives are for their medical care, “the missing conversations.” It is a subject that seniors must repeatedly address as their circumstances and choices may change as they age.

“I like that it is plural, as once you have the conversation people think you are done with it,” said de Vries. “It is hard enough to have the conversation. And once you have it, you want to wipe your hands dry and move on. As if that is it; it is one of many conversations people need to have, I think.”

For several years now de Vries has been involved in research in Canada looking at end-of-life issues among LGBT seniors. In one paper de Vries co-wrote, and is under review at the International Journal of Aging and Human Development for inclusion in a special issue on LGBT aging, he and his colleagues note that evading end-of-life discussions “keeps death ‘in the closet’ — along with one’s hopes, fears, and wishes about their end of life.”

The issue struck close to home for de Vries six years ago when his husband, John Blando, Ph.D., who is also a professor emeritus at SF State having worked there as an instructor/adviser in the Department of Counseling, was diagnosed with Parkinson’s disease. The men, both 62 and together 33 years, began to seriously discuss end-of-life issues, such as how to care for each other, as they drew up their wills and estates. When they moved four years ago from San Francisco to Palm Springs and had to revise their wills, they also completed their advance health care directives and durable powers of attorney.

“These naturally involve deeper discussions about end of life — at least that was our experience,” said de Vries. “Of course, elements of end-of-life discussions have dotted our other conversations as we talk about our plans and hopes for the future. I will admit to some discomfort in some of these conversations — about raising issues that we both fear, about releasing strong emotions — but they ultimately rest on expressions of love and opportunities to share.”

‘Death cafes’

Aging expert Brian de Vries, right, with his husband, John Blando, Ph.D.

Since the couple retired to Palm Springs, de Vries has continued to work on end-of-life issues and helped launch a group called PALS, short for Planning Ahead for LGBT Seniors. It presents seminars where people can discuss a range of palliative care issues, from entering hospice care to planning one’s funeral.

“We have a funeral home director come in who is gay and talks about his experiences and the issues and the complications he has seen and how they could be mitigated if people only planned ahead,” said de Vries.

He also borrowed a concept from Britain known as a “death cafe,” where people meet socially to talk about death and dying issues. The gatherings are held at least once a month in Palm Springs and attract upward of 20 people or more.

“What is so neat is it is an in-your-face approach to it. It is not a ‘passing away cafe’ or something subtler. It is a death cafe,” said de Vries. “The idea is it just kicks the door open and brings it out of the closet and brings it into a public space and invites people who may not know each other to a safe space to have these conversations.”

For those LGBT people who have thought about how to plan for their end-of-life care, they tend to focus solely on matters related to their death or dying and not the months or years leading up to their final days. As an example, de Vries said when he once asked a focus group of gay men if they had a will or written out their funeral plans, most had. Hardly any of them, however, had determined who in their life would take them to the hospital or pick them up when, and if, they were discharged.

“It kind of provides an entry into this. It is a bit innocuous to ask someone, ‘I need a ride back and someone to sit with me for an hour, would you do that?’ People feel honored to have been asked and that someone cared enough about me to think I could help them with this,” said de Vries.

Asking for help isn’t always easy for LGBT seniors, noted the Fenway Institute’s Krinsky, even when they have family or friends who can assist them. She recalled talking once to a group of 20 older lesbians and asking them if they would be willing to go to the pharmacy for a friend.

“Eighteen said they would go for someone,” said Krinsky.

But when she flipped the question and asked the women if they would request help for themselves in getting their medications from the pharmacy, “only eight hands went up.”

Krinsky refers to such a model of care as “horizontal caregiving,” where a circle of friends, neighbors, and/or co-workers rely on each other to look after one another.

“We see tight families of choice taking care of each other as best as they can,” she said, “as people are concerned about how will I care for myself as I age.”

Such a structure, she said, upends the heteronormative approach of relying on one’s biological family to provide caregiving. It is expected that a married straight couple’s children and grandchildren will look after them in their senior years and that responsibility is passed on with each new generation.

“Right now, we a have a vertical model of multi-generational caregiving,” Krinsky explained.

Challenges
Even though Personna lives in an LGBT-affirming city like San Francisco and has her family’s support, she is cognizant of the fact that there are still challenges that LGBT seniors must confront.

“Because of my orientation it is totally different than a heterosexual family and their end-of-life situations. So many things are already in place for them,’ she said. “By law you get things and your family connection is built in. My community, we have to build that and do the work. People my age usually don’t have what the heterosexual person has, like built in grandkids to come over and take you to lunch.”

Five years ago Personna moved from Cupertino into the city to help care for her friend, Bill Bowers, 71, a member of the famed gender-bending group the Cockettes whose outrageously designed jackets became a must-have for rock stars such as the members of the Rolling Stones and Led Zeppelin.

Bowers, a gay man who is HIV-positive, had been living alone at the Derek Silva Community when he had a stroke that left him unconscious for two days in his studio apartment. After that episode, he moved into a two-bedroom unit so that he would have a roommate who could look after him. After he lost his first roommate to cancer, Bowers asked Personna to move in.

“I can’t live alone,” said Bowers. “I asked Donna because she was traveling back and forth from the city to Cupertino on weekends to move in. She is here to be my caregiver.”

Personna not only ensures Bowers makes it to his various medical appointments and takes his daily regimen of medications but also provides companionship. They also share many of the same friends and can reminisce about their younger days in the city.

Bowers has designated an executor for his estate and thought about how he would prefer to be cared for at the end of his life. For example, he doesn’t want to be put on life support should it come to that.

He expects to live out his days in San Francisco, though Bowers said if he could afford it he would spend the rest of his days in Paris or somewhere tropical, like Tahiti or the jungles of South America.

Unafraid of death, Bowers is concerned about how he will die.

“I don’t want to suffer,” he said. “I watched my former roommate go through weeks of suffering. I don’t want to go through that or have someone have to watch me suffer.”

Complete Article HERE!