Doctors need to learn about dying, too

By Susan Svrluga

Doctors will finally be reimbursed for talking about death with their terminally ill patients, but, Michael Nisco argues, very few of them know how to do that.  Nisco, the hospice national medical director for Amedisys Home Health and Hospice Care, has taught at Stanford and Harvard medical schools. He founded the physician specialty training program in palliative care at the University of California San Francisco Medical School.

He writes that medical schools must do a better job of preparing physicians to help patients even when they can no longer heal them.

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Dying Patients Deserve Physicians Educated in End-Of-Life Care

By Michael Nisco, MD

Starting this year, Medicare will, for the first time ever, reimburse physicians for having end-of-life discussions with terminally ill patients.

In the ideal scenarios, doctors ask patients to identify how and where they want to spend those final days, and then recommend the best options.

Question is, will physicians, as a result, be motivated to initiate more of these crucial conversations? Will patients? And will this long-overdue reform ultimately improve, both clinically and economically, how well the U.S. health care system delivers end-of-life care?

Nobody knows for sure. But this much is certain: Many physicians have received no training along these lines. Few are educated in how to carry on this kind of talk with patients in the first place, much less in shepherding patients compassionately toward death.death-cab-for-cutie-transatlanticism-reissue

In 1999, only 26 percent of residency programs in the United States offered a course on care at the end of life as part of the curriculum, the Journal of the American Medical Association reported. Indeed, of 122 medical schools researchers surveyed more recently, only eight had mandatory coursework in end-of-life care.

Physicians all too often skip having an end-of-life discussion, or at least delay it as long as possible, even in the face of a major health crisis. Physicians are rarely prepared to conduct such momentous conversations with patients, least of all about anything as sensitive as advance care directives. We typically think and act short-term rather than looking ahead. But it’s more than that: Such conversations guarantee deep discomfort.

Acknowledging the approach of death means delivering a poor prognosis — and admitting to ourselves that we’re about to fail our patients forever. Doctors are hardly immune to living in denial. We can be unduly optimistic about how long even the sickest of the sick are going to stay alive.

After all, nobody wants to look death in the eye.

Code DeathAnd in bypassing this opportunity and doing what we believe to be right, we’re actually committing a wrong, bringing serious consequences. Patients pay the price. Those who need to be alerted to and informed about end-of-life care may wind up ill-advised and even ignorant about the choices available and what they might mean.

Terminal patients should have the opportunity to enter hospice care sooner than most do to take advantage of its clinical, emotional and spiritual benefits. They should also be granted the right to die at home if they so choose rather than in a hospital or a nursing home.

Pressure for these discussions to be imperative rather than optional is growing, and fast. The decision from the Centers for Medicare & Medicaid Services to compensate doctors for having these talks is only the latest breakthrough on this front.

In 2014, the Institute of Medicine came out with an influential report, “Dying in America: Improving Quality and Honoring Individual Preferences near the End of Life,” that, among other calls to action, urged Medicare to approve such reimbursements for these counseling sessions. The American Medical Association soon urged the same. Massachusetts even became the first state to pass a law requiring doctors to discuss with terminally ill patients how they want to be cared for at the end of life.

Of course health care professionals in current practice should adopt the proper protocols, too. Accordingly, Amedisys Home Health and Hospice Care has undertaken its own national educational initiative. Over the last year, more than 3,000 of our employees, across our 80 hospice centers, have come together to watch the PBS documentary “Being Mortal,” based on the book by Atul Gawande, and discuss how to apply its lessons to caring for our patients every day.

We’ve secured Continuing Medical Education accreditation so we can credit every physician, nurse practitioner and physician assistant who completes an online course featuring the film. We’re also screening the film for physicians, nurses, social workers, home health workers and the general public at hundreds of locations across the country.death-poems-death-poetry-dark-poems-dark-poetry

The broader solution here, at once simple and complex, is that more medical schools should develop curricula about performing end-of-life care in general and conducting discussions about it in particular.

We have to change how people die in this country – and, more specifically, teach the next generation of physicians how best to care for the dying. Here’s a prescription to get us started:

  • Care at the end of life should be taught as an essential clinical skill throughout the continuum of medical education.
  • Medical students should be exposed in all stages of training to dying patients and multidisciplinary teams who can instruct in a humane model of palliative care.
  • Medical schools must train and hire more educators to demonstrate state-of-the-art palliative care for medical students, residents, fellows, medical school faculty, and physicians in practice.
  • The following major goals should be the focus: establishing suitable communication skills; acquiring essential technical knowledge for treating symptoms and relieving pain; and learning to address the psychosocial, cultural and spiritual needs of patients.

Unless action is taken, we may see more physicians telling stories like this one, from Charles von Gunten’s “Why I Do What I do”:

The young man was ‘end stage’ and we could do nothing for him. He was short of breath and unable to talk and looked terrified. I had no idea what to do. So I patted him on the shoulder, said something inane, and left.  He died hours later. The memory haunts me. I was ignorant and failed to care for him properly.

These improvements are already desperately overdue. Palliative care is the responsibility of all physicians, yet only an estimated 6,500 physicians are certified in hospice and palliative care. Only if we improve our overall approach will our patients and families ever truly have a chance to complete their life’s journey with honor and dignity.

Complete Article HERE!

The Four Stages of Life

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Life is a bitch. Then you die. So while staring at my navel the other day, I decided that that bitch happens in four stages. Here they are.

Stage One: Mimicry

We are born helpless. We can’t walk, can’t talk, can’t feed ourselves, can’t even do our own damn taxes.

As children, the way we’re wired to learn is by watching and mimicking others. First we learn to do physical skills like walk and talk. Then we develop social skills by watching and mimicking our peers around us. Then, finally, in late childhood, we learn to adapt to our culture by observing the rules and norms around us and trying to behave in such a way that is generally considered acceptable by society.

The goal of Stage One is to teach us how to function within society so that we can be autonomous, self-sufficient adults. The idea is that the adults in the community around us help us to reach this point through supporting our ability to make decisions and take action ourselves.

But some adults and community members around us suck.1 They punish us for our independence. They don’t support our decisions. And therefore we don’t develop autonomy. We get stuck in Stage One, endlessly mimicking those around us, endlessly attempting to please all so that we might not be judged.2

In a “normal” healthy individual, Stage One will last until late adolescence and early adulthood.3 For some people, it may last further into adulthood. A select few wake up one day at age 45 realizing they’ve never actually lived for themselves and wonder where the hell the years went.

This is Stage One. The mimicry. The constant search for approval and validation. The absence of independent thought and personal values.

We must be aware of the standards and expectations of those around us. But we must also become strong enough to act in spite of those standards and expectations when we feel it is necessary. We must develop the ability to act by ourselves and for ourselves.

Stage Two: Self-Discovery

In Stage One, we learn to fit in with the people and culture around us. Stage Two is about learning what makes us different from the people and culture around us. Stage Two requires us to begin making decisions for ourselves, to test ourselves, and to understand ourselves and what makes us unique.

Stage Two involves a lot of trial-and-error and experimentation. We experiment with living in new places, hanging out with new people, imbibing new substances, and playing with new people’s orifices.

In my Stage Two, I ran off and visited fifty-something countries. My brother’s Stage Two was diving headfirst into the political system in Washington DC. Everyone’s Stage Two is slightly different because every one of us is slightly different.

Stage Two is a process of self-discovery. We try things. Some of them go well. Some of them don’t. The goal is to stick with the ones that go well and move on.

Stage Two is a process of self-discovery. We try things. Some of them go well. Some of them don’t. The goal is to stick with the ones that go well and move on.

Man sitting on cliff looking out over clouds

Stage Two lasts until we begin to run up against our own limitations. This doesn’t sit well with many people. But despite what Oprah and Deepak Chopra may tell you, discovering your own limitations is a good and healthy thing.

You’re just going to be bad at some things, no matter how hard you try. And you need to know what they are. I am not genetically inclined to ever excel at anything athletic whatsoever. It sucked for me to learn that, but I did. I’m also about as capable of feeding myself as an infant drooling applesauce all over the floor. That was important to find out as well. We all must learn what we suck at. And the earlier in our life that we learn it, the better.

So we’re just bad at some things. Then there are other things that are great for a while, but begin to have diminishing returns after a few years. Traveling the world is one example. Sexing a ton of people is another. Drinking on a Tuesday night is a third. There are many more. Trust me.

Your limitations are important because you must eventually come to the realization that your time on this planet is limited and you should therefore spend it on things that matter most. That means realizing that just because you can do something, doesn’t mean you should do it. That means realizing that just because you like certain people doesn’t mean you should be with them. That means realizing that there are opportunity costs to everything and that you can’t have it all.

There are some people who never allow themselves to feel limitations — either because they refuse to admit their failures, or because they delude themselves into believing that their limitations don’t exist. These people get stuck in Stage Two.

These are the “serial entrepreneurs” who are 38 and living with mom and still haven’t made any money after 15 years of trying. These are the “aspiring actors” who are still waiting tables and haven’t done an audition in two years. These are the people who can’t settle into a long-term relationship because they always have a gnawing feeling that there’s someone better around the corner. These are the people who brush all of their failings aside as “releasing” negativity into the universe or “purging” their baggage from their lives.

At some point we all must admit the inevitable: life is short, not all of our dreams can come true, so we should carefully pick and choose what we have the best shot at and commit to it.

But people stuck in Stage Two spend most of their time convincing themselves of the opposite. That they are limitless. That they can overcome all. That their life is that of non-stop growth and ascendance in the world, while everyone else can clearly see that they are merely running in place.

In healthy individuals, Stage Two begins in mid- to late-adolescence and lasts into a person’s mid-20s to mid-30s.4 People who stay in Stage Two beyond that are popularly referred to as those with “Peter Pan Syndrome” — the eternal adolescents, always discovering themselves, but finding nothing.

Stage Three: Commitment

Once you’ve pushed your own boundaries and either found your limitations (i.e., athletics, the culinary arts) or found the diminishing returns of certain activities (i.e., partying, video games, masturbation) then you are left with what’s both a) actually important to you, and b) what you’re not terrible at. Now it’s time to make your dent in the world.

Stage Three is the great consolidation of one’s life. Out go the friends who are draining you and holding you back. Out go the activities and hobbies that are a mindless waste of time. Out go the old dreams that are clearly not coming true anytime soon.

Then you double down on what you’re best at and what is best to you. You double down on the most important relationships in your life. You double down on a single mission in life, whether that’s to work on the world’s energy crisis or to be a bitching digital artist or to become an expert in brains or have a bunch of snotty, drooling children. Whatever it is, Stage Three is when you get it done.

Tattooed man with baby

Stage Three is all about maximizing your own potential in this life. It’s all about building your legacy. What will you leave behind when you’re gone? What will people remember you by? Whether that’s a breakthrough study or an amazing new product or an adoring family, Stage Three is about leaving the world a little bit different than the way you found it.

Stage Three ends when a combination of two things happen: 1) you feel as though there’s not much else you are able to accomplish, and 2) you get old and tired and find that you would rather sip martinis and do crossword puzzles all day.

In “normal” individuals, Stage Three generally lasts from around 30-ish-years-old until one reaches retirement age.

People who get lodged in Stage Three often do so because they don’t know how to let go of their ambition and constant desire for more. This inability to let go of the power and influence they crave counteracts the natural calming effects of time and they will often remain driven and hungry well into their 70s and 80s.5

Stage Four: Legacy

People arrive into Stage Four having spent somewhere around half a century investing themselves in what they believed was meaningful and important. They did great things, worked hard, earned everything they have, maybe started a family or a charity or a political or cultural revolution or two, and now they’re done. They’ve reached the age where their energy and circumstances no longer allow them to pursue their purpose any further.

The goal of Stage Four then becomes not to create a legacy as much as simply making sure that legacy lasts beyond one’s death.

This could be something as simple as supporting and advising their (now grown) children and living vicariously through them. It could mean passing on their projects and work to a protégé or apprentice. It could also mean becoming more politically active to maintain their values in a society that they no longer recognize.

Old Woman Praying

Stage Four is important psychologically because it makes the ever-growing reality of one’s own mortality more bearable. As humans, we have a deep need to feel as though our lives mean something. This meaning we constantly search for is literally our only psychological defense against the incomprehensibility of this life and the inevitability of our own death.6 To lose that meaning, or to watch it slip away, or to slowly feel as though the world has left you behind, is to stare oblivion in the face and let it consume you willingly.

What’s the Point?

Developing through each subsequent stage of life grants us greater control over our happiness and well-being.7

In Stage One, a person is wholly dependent on other people’s actions and approval to be happy. This is a horrible strategy because other people are unpredictable and unreliable.

In Stage Two, one becomes reliant on oneself, but they’re still reliant on external success to be happy — making money, accolades, victory, conquests, etc. These are more controllable than other people, but they are still mostly unpredictable in the long-run.

Stage Three relies on a handful of relationships and endeavors that proved themselves resilient and worthwhile through Stage Two. These are more reliable. And finally, Stage Four requires we only hold on to what we’ve already accomplished as long as possible.

At each subsequent stage, happiness becomes based more on internal, controllable values and less on the externalities of the ever-changing outside world.

Inter-Stage Conflict

Later stages don’t replace previous stages. They transcend them. Stage Two people still care about social approval. They just care about something more than social approval. Stage 3

people still care about testing their limits. They just care more about the commitments they’ve made.

Each stage represents a reshuffling of one’s life priorities. It’s for this reason that when one transitions from one stage to another, one will often experience a fallout in one’s friendships and relationships. If you were Stage Two and all of your friends were Stage Two, and suddenly you settle down, commit and get to work on Stage Three, yet your friends are still Stage Two, there will be a fundamental disconnect between your values and theirs that will be difficult to overcome.

Generally speaking, people project their own stage onto everyone else around them. People at Stage One will judge others by their ability to achieve social approval. People at Stage Two will judge others by their ability to push their own boundaries and try new things. People at Stage Three will judge others based on their commitments and what they’re able to achieve. People at Stage Four judge others based on what they stand for and what they’ve chosen to live for.

The Value of Trauma

Self-development is often portrayed as a rosy, flowery progression from dumbass to enlightenment that involves a lot of joy, prancing in fields of daisies, and high-fiving two thousand people at a seminar you paid way too much to be at.

Street graffiti showing abstract human portrait

But the truth is that transitions between the life stages are usually triggered by trauma or an extreme negative event in one’s life. A near-death experience. A divorce. A failed friendship or a death of a loved one.

Trauma causes us to step back and re-evaluate our deepest motivations and decisions. It allows us to reflect on whether our strategies to pursue happiness are actually working well or not.

What Gets Us Stuck

The same thing gets us stuck at every stage: a sense of personal inadequacy.

People get stuck at Stage One because they always feel as though they are somehow flawed and different from others, so they put all of their effort into conforming into what those around them would like to see. No matter how much they do, they feel as though it is never enough.

Stage Two people get stuck because they feel as though they should always be doing more, doing something better, doing something new and exciting, improving at something. But no matter how much they do, they feel as though it is never enough.

Stage Three people get stuck because they feel as though they have not generated enough meaningful influence in the world, that they make a greater impact in the specific areas that they have committed themselves to. But no matter how much they do, they feel as though it is never enough.8

One could even argue that Stage Four people feel stuck because they feel insecure that their legacy will not last or make any significant impact on the future generations. They cling to it and hold onto it and promote it with every last gasping breath. But they never feel as though it is enough.

The solution at each stage is then backwards. To move beyond Stage One, you must accept that you will never be enough for everybody all the time, and therefore you must make decisions for yourself.

To move beyond Stage Two, you must accept that you will never be capable of accomplishing everything you can dream and desire, and therefore you must zero in on what matters most and commit to it.

To move beyond Stage Three, you must realize that time and energy are limited, and therefore you must refocus your attention to helping others take over the meaningful projects you began.

To move beyond Stage Four, you must realize that change is inevitable, and that the influence of one person, no matter how great, no matter how powerful, no matter how meaningful, will eventually dissipate too.

And life will go on.

Footnotes

  1. Often this occurs because the adults/community themselves are still stuck in Stage One.
  2. Some people who get stuck in Stage One get stuck because they come to believe that they will never be able to fit in. These people usually succumb to some form of distraction, depression or addiction.
  3. I put normal in quotes because, really, what the fuck is normal?
  4. Stages can overlap to a certain extent. Transitioning between them is never black/white. It happens gradually. And often with some emotional stress and major lifestyle changes.
  5. This applies to the rare individuals who are talented and capable enough to still remain highly influential and relevant into their 70s and 80s as well. Stage Three doesn’t end until the desire for some peace and quiet outweighs one’s ability to affect change in the world. Some people die without ever leaving Stage Three.
  6. For more on this, see The Denial of Death by Ernest Becker.
  7. Research shows that generally people become happier and more satisfied as their lives go on.
  8. One way to think about it is that people who are stuck at Stage Two always feel as though they need more breadth of experience, whereas Stage Three people get stuck because they always feel as though they need more depth.

Complete Article HERE!

New website will give people ‘greater control over their death’

By JAMIE BULLEN

Greater control: Compassion in Dying said too few people are planning for how they want to be treated at the end of their lives
Greater control: Compassion in Dying said too few people are planning for how they want to be treated at the end of their lives

A website which allows people to declare how they wish to be treated in the final weeks of their lives is set to launch this week.

Compassion in Dying, a charity that supports people to exercise their rights over end-of-life treatment, said MyDecisions.org.uk will give people greater control over their death.

The group said the website was created in response to fears not enough people were planning for how they want to be treated in the advanced stages of their life.

A statement on the MyDecisions.org.uk homepage reads: “You might not like to think about it but there might come a time when you’re too unwell to tell those caring for you – like your family or a doctor – what you do and don’t want to happen.”

Anyone visiting the site can fill out an “advance decision” where users can refuse any drugs or medical treatments that may be given to them at some time in the future.

The document, also known as a living will, is legally binding meaning any healthcare professional that ignores it risks going to court.

The website also allows people to make an “advance statement” to declare preferences, wishes and beliefs for those who might have to make choices for them should they lose the capacity to make their own decisions.

According to research commissioned by the charity, only 4 per cent of Britons made a record of their preferences last year.

The website is set to go live on Thursday.

Complete Article HERE!

10 Excuses You Tell Yourself Why You Don’t Need To Have The Conversation & 10 Reasons Why Those Excuses Don’t Hold Up

We did a survey in 2013 which found that “90 percent of people say that talking with their loved ones about end-of-life care is important yet only 30 percent of people actually have done so.” Clearly, knowing the importance of a conversation or behavior doesn’t always mean we’ll do it. How many diets and half-marathon training programs have begun in this vein? We know all the excuses a person is likely to tell themselves to avoid the conversation. Any of these look familiar?

Excuse1

“I know my loved one well enough to make the right call.”

There are plenty of reasons to have the conversation with your loved one beyond your belief that you know what they would want. Having a specific conversation about they would prefer could bolster your confidence, strengthen their trust and reward you with a new sense of intimacy. The conversation could really surprise you. You might discover something about your loved one that you never expected.

Excuse2

“I don’t need to have the conversation. I’m healthy and young.”

The Conversation Project is an initiative to encourage people to have these conversations before they are sick or terminal. If you’re healthy and well, it’s the perfect time to have the conversation. As we say, it’s always too soon, until it’s too late.

 

Excuse3

“If my loved one wants to have a conversation, they can come to me.”

This excuse is extremely powerful. It allows you to believe you’re up for the conversation while simultaneously avoiding it.. Don’t fall victim to this one. Your loved one might be thinking the same thing, trapping you both in a game of chicken, in which neither of you have important conversations about your health, your finances and your future because you’re waiting for the other to initiate it.

 

Excuse4

“I’ll just decide based off what I would want.”

This excuse provides false comfort. No need to have the conversation because you know what you would do for yourself. Right? But this method of avoidance leads to an improbable and unrealistic scenario. Even if you are the designated health care proxy that doesn’t mean you’ll be the only one who cares about the outcome. You might find yourself having to explain your choices to other family members, friends and caretakers. This might open up a disagreement between family and loved ones who believe the person in question wouldn’t want that. And you’d be surprised how many decisions you might have to make. Imagine what happens when you need to make a decision and you don’t know what you would want.

 

Excuse5

“It makes me uncomfortable.”

The thought of having The Conversation can make a lot of people uncomfortable. Understandably. You do have the right to live your life with minimal discomfort, but consider this: we’ve heard from a lot of people who wished they’d had the conversation, rarely those who wished they hadn’t. Knowing what a loved one prefers can give you A LOT of comfort during a time when you most desperately need it.

 

Excuse6

“I don’t want to encourage my death by talking about it.”

We work with many diverse communities of various beliefs, cultures, and faiths. Each has their own history, experience and theological lens through which they view death. Our mission is to ensure that your fears aren’t holding you back from a very real and human experience.

 

Excuse7

“I don’t want to offend my loved one.”

Death doesn’t have to be an offensive topic, and if your loved one perceives it to be so, maybe you can start the conversation there. Ask them why they find death so offensive. A simple question can lead into a complex and profound conversation.

 

Excuse8

“I don’t need that kind of negativity in my life right now.”

Having the conversation doesn’t have to lead to a negative experience. Many people who had the conversation describe it as a positive, freeing experience rather than a negative one.

 

Excuse9

“I don’t even know what my career path will be let alone what I prefer about my end-of-life  care.”

If you’re in your twenties or thirties, it can be particularly difficult to focus on your end-of-life care. You’re focusing on surviving the hardship of life post-college. We know the #TheStruggleIsReal. But while it’s hard to relinquish the coziness of childhood irresponsibility, you must. Get your affairs together: start that 401K, use sunscreen, stop eating take-out every night, and have the conversation with your loved ones.

 

Excuse10

“Why do we need to have a conversation? Can’t my loved one just write everything down?”

Modern medicine is helping individuals live longer than ever before, and with that extended time on earth comes increased medical complications and a lot more decisions to be made at the end-of-life. People will often say, ‘if I am ever like that – pull the plug,’ but there is often no proverbial plug to pull. Instead, there is a number of cascading decisions left for your loved ones to make. Talking through your values with your family can give them the guidance to navigate the health care options presented to them. Questions like: “What matters most to them at the end of life?” “Do they want to be at home or in the hospital?”  “Do they mind visitors?” “Who do they want to make sure is there?”  “Is there a book they might want read to them?” “Do they want music playing or a ball game on in the room?” These are the questions you might find yourself considering. Conversations are organic; they are interactive. This conversation isn’t just about answering a set of medical questions, but exploring all the avenues you didn’t think were possible.

So really, what are you waiting for? Check out our Conversation Starter Kit and have the conversation today.

Complete Article HERE!

Dead man’s party

He didn’t die with dignity, but I celebrated anyway

By

My father’s recent death was not beautiful, and neither were any of the other deaths I’ve witnessed of late. This has left me wondering about a better path. Death is not easy, to be sure, but these were made particularly painful by medical interventions—or perhaps I witnessed the confusion between saving a life and prolonging the process of dying.

So I threw a party. Or rather, I held my first Death Café, and it turned out to be a lively, invigorating affair.

In Europe, there’s a tradition of gathering to discuss important subjects—a café philo, for a philosophical café, or café scientifique, a scientific café, and now there are café mortel, or death cafés. A death café isn’t an actual place; it’s a temporary event in various locations, such as my home, complete with decorations and, in my case, a cake with “DEATH: THE FINAL FRONTIER” scrawled on top.

My gathering was comprised of spunky friends, all in our middle years, all of us healthy. As it turns out, this is the segment of population that most seems to care about shaping the end of a life. A Pew Research Center study found that less than half of people over 75 had given much thought to the end of their lives, and incredibly, only 22 percent of them had written down wishes for medical treatment. The same study, though, found a sharp increase in all adults putting something in writing (six of 10 of us), which indicates that percentage-wise, it’s the slightly younger folks who are preparing now for their inevitable deaths.

This does not surprise me. For the last 14 years, I’ve been one of the 28 million Americans currently helping someone die. Baby Boomers and Gen Xers are caught in an unprecedented tide of caretaking both children and parents (not to mention ourselves and our own aging bodies); we are the first generation to be caught in this particular kind of caregiving-and-slow-death crisis. With medical intervention and technological wizardry, we’re forced to make decisions about procedures and medicines and ethics as never before. And we find ourselves without much guidance in a culture that’s conflicted and confused about dying.

death party

Which is why we’re willing to talk. At my Death Café, I encouraged us not to focus on the deaths we’d witnessed in the past, but rather to speak of the deaths we want for ourselves in the future. Various results emerged. Half were afraid of the suffering that can precede death; half were afraid of death itself. Few of us had practiced death (“pretend this next breath is your last; what does that feel like?”), but all of us were convinced that doing so would only intensify and enlarge our lives.

The zeitgeist of this new movement is just now gaining momentum, but I can feel its strength and power. An unprecedented 66 percent of Americans now think there are instances in which doctors should allow a patient to die instead of doing everything possible to save that patient’s life. People would like to die—sometimes would like others to die—and this doesn’t make us morbid or crazy or unethical or mean. No. We are merciful and kind. We are as moral as we are mortal. We just want to know how to gracefully do what is going to happen anyway.

What lies ahead is unexplored territory, much like death itself, really. California recently passed “Death with Dignity” legislation, and the state representative in my hometown is reintroducing a similar bill in Colorado. Don’t get me wrong: I am all for funding research, finding cures and offering respite to caregivers. But it’s also our ethical duty to try for a chin-up, heart-steady end.

My father contracted pneumonia after 14 years of suffering with Alzheimer’s. He was given antibiotics and I was not in a legal position to object, but I’d have asked for comfort care only—not because I didn’t love him, but because I loved him enough to want him to have as natural and relaxed a death as possible.

Instead, I saw him grimace in pain and fear. I saw tubes and syringes and the sores on his body. I saw the family he’d worked so hard to create break apart under the pressure. I saw his blue eyes fade, and they taught me well: This could happen to you, too.

Death is perhaps the greatest mystery we face and the actual act of dying is the last physical act of our lives. We can strive to do it our way and to do it well. If anything deserves preparation, or some renewed clarity, death might be it. Which is why I suggest throwing a lively party.

Laura Pritchett is a contributor to Writers on the Range, an opinion service of High Country News (hcn.org). She lives in rural Colorado and her novel, Stars Go Blue, is based on her experience with her father.

Complete Article HERE!

Prison hospice program blesses both the living and dying

BY PATRICIA GANNON

Hospice of Acadiana, whose volunteers include, from left, Martie Beard, Lyle Ann Hernandez, Ann Wallace, Lewis Bernard and Charlene Miller, annually visit state prisons to support inmates administering end-of-life caregiving to fellow prisoners.
Hospice of Acadiana, whose volunteers include, from left, Martie Beard, Lyle Ann Hernandez, Ann Wallace, Lewis Bernard and Charlene Miller, annually visit state prisons to support inmates administering end-of-life caregiving to fellow prisoners.

According to Luke 23:42, a thief crucified alongside Jesus said to him, “Remember me when you come into your kingdom” to which Jesus replied, “Amen, I say to you today you will be with me in Paradise.”

Hospice of Acadiana takes the verse to heart and annually sends volunteers to support inmates administering end-of-life caregiving to fellow prisoners.

Volunteers bring bags of supplies to their prison hospice counterparts, inmates taking on death watches in addition to other prison duties.

The bags are handmade by a Lafayette woman and contain a blanket, candy, snacks, socks and toiletries, all supplied by the volunteers themselves or by donation. The blanket doubles as a prayer shawl and comes with the blessing, “Know that even in the middle of the darkest night you are not alone.”

“We do continuing education, but we leave with more than we bring,” said Ann Wallace, Hospice of Acadiana volunteer director.

The volunteers mostly talk about hope.

“We try to talk about topics to help them be better volunteers,” she said. “It’s a very special program and they (inmates) have to apply. It’s an esteemed position.”

While Louisiana State Penitentiary at Angola has the first and oldest prison hospice program in the state, the volunteer group also serves Dixon Correctional Institute in Jackson and Elayn Hunt Correctional Center and Louisiana Correctional Institute for Women, both in St. Gabriel.

There also is a hospice program at the B.B. “Sixty” Rayburn Correctional Center in Washington Parish, near Angie.

Started in 1997 by directive of Warden Burl Cain, who recently announced his retirement, Angola trained 40 inmates in issues that affect end of life and how to take care of fellow prisoners.

Hospice of Acadiana mentors from the outside.

“We talk about the four most important things,” said Lewis Bernard, a volunteer for 15 years. “I’m sorry, I love you, thank you, and I forgive you. We start with that.”

Volunteers from Hospice of Acadiana assist inmates in practicing basic care, helping the terminally ill to die comfortably and making sure inmates don’t die alone. They offer advice in all the aspects of social, emotional and physical care, including bereavement, spirituality and reconciliation with family.

Anywhere from 10 to 20 volunteers are mustered for the yearly visit in December.

“We put an email out that we’re going to the prison and ask who wants to come,” said Wallace.

“No one really knows until you experience it,” she said. “My Bible study group didn’t even understand.”

Whether they’re serving 10 to 20 years or life, the reality is terminally ill prisoners are not transferred out to die, and if family doesn’t claim them, they are buried on site in coffins made by prisoners.

“I remember one inmate saying, ‘I know I’m like a broken car, they’re going to fix me and I’ll run better,” said Bernard. “At St. Gabriel and Dixon, there’s hope.”

He said that’s not the case at Angola. “They (prison hospice volunteers) see their work as more of a ministry,” said Bernard, “You can’t be a wimp and do that work. They become the nurses. At the moment they die, nothing’s left but their relationship with God. They’ve been stripped of everything else.”

“It’s the way all hospice should work,” said Jamie Boudreaux, executive director of the Louisiana and Mississippi Palliative Care Association. “They are caring for their fellow inmates in a most remarkable way. For 24 hours they don’t leave their side. It’s one of the most incredible programs in the country. We have correctional officers who come to Angola to see it.”

Prisons in Louisiana have a particularly bloody aspect to their history, said Boudreaux.

“Angola is still a maximum security facility,” he said, “but there is a new level of cooperation between inmates and guards.”

According to Boudreaux, prisoners themselves notice a difference, a newfound dignity.

“It truly is the most transformative story I have seen in my lifetime,” he said.

The Angola hospice program is documented in “Serving Life,” a film narrated and produced by Academy Award-winner Forest Whitaker.

The film takes viewers inside Angola, where the average sentence is more than 90 years. With prison sentences so long, 85 percent of the inmates will never live on the outside again.

Charlene Miller, a 23-year volunteer, explained that before hospice, prisoners died in their cells or the infirmary.

“It’s something to see those big, burly men soothe the dying and pray with them,” she said. “It makes me feel good. I love it. It’s a privilege to be in on the last moments of their lives.”

Complete Article HERE!

2015 is the year America started having a sane conversation about death

The American health care debate used to get bogged down in fights over rationing and “pulling the plug on grandma.” Not anymore.

by Sarah Kliff

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Earl Blumenauer had become accustomed to losing.

During the health reform debate, the Oregon congressman pushed a provision that would reimburse doctors for helping Medicare patients draw up advance care directives.

Blumenauer’s proposal quickly became the most politically toxic section of a law rife with contested projects and programs. It’s the part of Obamacare that Sarah Palin termed “death panels.” In August 2009, amidst ugly skirmishes at angry town halls, legislators relented. They left the end-of-life planning provision on the cutting-room floor.

“It was very difficult, in part because of the lingering death panel cloud”

But Blumenauer was undeterred. He quickly began lobbying the Obama administration to create the advance care benefit through regulations that Congress wouldn’t have to approve.

“It was very difficult, in part because of the lingering death panel cloud,” Blumenauer told me in a recent interview.

blumenauer card
The pocket card Rep. Blumenauer would hand out to White House officials.

Since 2009, Blumenauer has doggedly — and unsuccessfully — badgered any Obama administration member who might listen to his cause. But the White House, for five years, wouldn’t budge. Every year, it would put out the list of services Medicare would reimburse. And every year, advance care planning would not be on it.

Blumenauer recalled once attending a picnic at the White House — and pestering administration officials to take small cards he’d had printed up to summarize his case.

“At this year’s White House picnic, around the Fourth of July, there was some indications it could go our way,” he says.

On November 2, Blumenauer finally won: The White House finalized rules that will allow doctors to be paid for every discussion they have with patients about creating an advance directive.

The United States has — quietly and with little fanfare — begun to do something quite remarkable. We’ve started to have a more sane conversation about death, something that just this spring, as I wrote in a lengthy essay, seemed near impossible. That has allowed for significant policy changes that will, starting in 2016, begin to revamp the way Americans plan for the inevitable.

I’ve spent much of the past month asking legislators, doctors, government officials, and advocates about how that happened. They say health care became a much less heated topic. Doctors and patients, meanwhile, began to take a bigger leadership role. And the White House, cognizant of Obama nearing the end of its term, appeared to see a last moment for action — and decided to seize it.

“As a country, we’re more willing to have a conversation around the end of life,” says Kim Callinan, chief program officer for the end-of-life advocacy group Compassion and Choices.

Medicare spends billions on end-of-life care. But patients aren’t getting the care they want.

Fierce protests over end-of-life care broke out at 2009 congressional town hall meetings.
Fierce protests over end-of-life care broke out at 2009 congressional town hall meetings.

Dying in America is expensive. The 6 percent of Medicare patients who die each year typically account for 27 to 30 percent of the program’s annual health care spending. Medicare spent an average of $33,500 for beneficiaries who died in 2011 — four times the amount it spent on the seniors who lived.

Health care providers often make heroic efforts to save patients’ lives in their final days and weeks. The average Medicare patient who dies from cancer spends 5.1 days of his or her last month of life in the hospital. A quarter of these cancer patients are admitted to the intensive care unit over the same time period.

But surveys of patients with terminal disease suggest this isn’t what they actually want. One survey of 126 patients facing near death found they had five priorities at the end of life — and prolonging life was not actually among them.

Patients told researchers they wanted their pain controlled, a sense of control over their care, their burdens relieved, and time to strengthen relationships with loved ones. They also specifically did not want the “inappropriate prolongation of dying.”

A 2012 paper found that cancer patients who have less intensive care at the end of life — who have fewer hospitalizations and intensive care unit visits in their last week of life — report the best quality of life at the time of death.

In Washington, something so costly that leads to worse patient outcomes would be, in other public health programs, a no-brainer. But with end-of-life care, the opposite tends to be true: We can’t talk about the cost of dying because it sounds like a discussion about rationing. Taking cost into account feels callous and inappropriate in the context of death. For years now, that’s made end-of-life care an unapproachable topic on Capitol Hill.

That the already-polarizing health reform law included policy changes for end-of-life care certainly did not help matters.

“This was toxic for a while because of the gross mischaracterization of what we wanted to do,” says Sen. Mark Warner (D-VA), who has worked on end-of-life care legislation.

Warner, like many other legislators who work on the issue, had his own personal story of attempting to care a loved one — in his case, his mother, as her Alzheimer’s worsened.

“I was someone who was relatively informed; I was the governor of Virginia,” he says. “We knew something was coming, but we never had the conversation within our family that we needed to. This is an issue that has touched every family, and touched all the ups and downs of the health care debate.”

How 2015 changed the way America talks about death

white house

The first two attempts to pay doctors to talk about death started in Washington. And both were abject failures.

The first attempt touched off the “death panel” outcry during the summer of 2009.

The second came in the winter of 2010, when the Obama administration tried quietly slipping the new benefit into regulations that outline how much Medicare doctors get paid for various procedures. That approach seemed to work — until an eagle-eyed New York Times reporter noticed the regulatory bombshell and wrote a story for the paper’s front page. Within days, the Obama administration retreated.

“We were, to put it mildly, disappointed when the administration changed course at the end of 2010,” says Blumenauer. “Any poor soul who happened to be the secretary of Health and Human Services or high ranking at the Center for Medicare Services has heard from me about it.”

Any federal proposal to change the way Americans die was met with immediate skepticism and framed as a government takeover of health care.

This last successful attempt didn’t start in the White House. It didn’t even begin in Washington. It began far outside the Beltway, at the 2012 meeting of the Illinois State Medical Society.

That’s where two doctors from the DuPage Medical Society — which covers the county just west of Chicago — brought to the floor a resolution to ask the American Medical Society to create a billing code for advance care planning discussions. Somewhat confusingly, the AMA creates all the billing codes that Medicare uses, while the government decides how much to pay for each code.

“This was the voice of doctors saying, ‘We want this,'” says Scott Cooper, executive director of the Illinois Medical Society. “Because it came from physicians and was based on clinical experience, and not some policy wonk who had some idea in Washington. It’s an easier sell when you have the voice of the medical community.”

The resolution passed — and a handful of Illinois State Medical Society members flew to an AMA meeting in 2013 to deliver their request in person. They were successful, and the AMA created two codes.

“It’s not every day you just create a new procedure for Medicare,” says Cooper. “We’d never done it before. But this was relatively seamless and easy. It didn’t face any pushback.”

After that 2013 meeting, the billing codes existed — but Medicare never attached any money to them. If a doctor had tried to bill for an end-of-life planning discussion, no reimbursement would show up. Advocates pushed delicately on the issue, knowing that Medicare was a massive agency they had to work with on countless other issues.

“It’s not every day you just create a new procedure for Medicare”

“You don’t want to be put in this awkward position of pushing too hard against an administration or executive branch that has largely been doing many positive things,” says Peter Hollmann, a board member of the American Geriatric Society and a practicing physician in Rhode Island.

Medicare sat on the codes for two years. But in early 2015, rumors started to ripple through Washington’s health policy circles: This would be the year that Medicare started paying for end-of-life discussions.

The timing made sense: This was, arguably, the last moment the Obama administration had to create the benefit. If the administration waited until 2016, it would be making the change mere days before the presidential election — a risky time for any policy change. Late 2015 appeared to be the Obama administration’s last shot.

“People felt this was the last chance to do this,” Hollmann says. “No one knows what can happen in an election year, with the potential for shenanigans.”

On July 8, Medicare published draft plans to pay doctors to talk about death (about $80 for the first 30 minutes, and another $75 for an additional half-hour). The agency invited comments, which came back near universally positive.

“I am a healthcare professional in palliative care and advance care planning is critical to patients and their loved ones,” one doctor from California wrote in.

“Patients and families deserve to have realistic information provided by their doctors, rather than relying on their assumptions often fed by the popular media about what ‘life support’ and ‘rehabilitation’ can actually look like,” another in Oregon commented.

“Please add the codes below,” another Tennessee doctor requested, “so end-of-life suffering can be minimized.”

There was no outcry, and no doctors objecting to the new Medicare benefit. On October 30, Medicare made the decision official: Beginning in January 2016, it would pay doctors to talk about death.

“It’s a terrible, terrible way to die”

Brittany Maynard on her wedding day.
Brittany Maynard on her wedding day.

Much like in Washington, bills that changed end-of-life policy never had much luck in California before.

Advocates there, however, wanted to go much further: They had pushed legislation that would allow doctors to prescribe lethal medication to terminally ill patients — in other words, physician-assisted suicide.

But efforts failed in 2005 and 2007, as the California legislature rejected the proposal. Only small, decidedly liberal states like Vermont and Oregon seemed willing to pass those laws.

That all changed with Brittany Maynard, a 29-year-old who died in late 2014 from a rare brain cancer called glioblastoma multiforme. It’s a fatal disease that typically causes massive cognitive decline in the last months of lives. Patients can become unable to remember their own last names or to distinguish between a trash can and a toilet.

“My glioblastoma is going to kill me, and that’s out of my control,” Maynard told Peopleat the time. “I’ve discussed with many experts how I would die from it, and it’s a terrible, terrible way to die.”

Maynard looked at that future and made a firm decision against. She moved to neighboring Oregon, which allows doctors to prescribe lethal medications to terminally ill patients like her. Maynard used that law to take her own life on October 30, 2014.

Before her death, Maynard also recorded a series of videos imploring California’s legislature to pass a similar law — which would allow other Californians to choose the same death without moving hundreds of miles north. She recorded testimony that was presented to the legislature in March 2015 — five months after her death.

 

“Brittany helped normalize the discussion around end-of-life care,” says Kim Callinan of Compassion and Choices. “Here was this beautiful 29-year-old woman whom we could really relate to. Her coming forward helped transform the conversation that was taking place already, and raised the issue’s visibility.”

Compassion and Changes ran its largest-ever campaign for a state bill, putting a half-dozen organizers on the ground throughout the state. It had a watershed moment when the California Medical Association, which had opposed previous aid-in-dying bills, agreed not to take a stance on the new legislation.

Maynard’s illness caused the group to “start taking a look at our historical positions,” California Medical Association spokesperson Molly Weedn told me over email. “The decision was made to remove any policy that we had on the books that outright opposed aid in dying. We wanted to ensure that it was a decision made between a physician and their patient and determined around individual instances.

On October 5 — 340 days after Maynard’s death — California Gov. Jerry Brown signed Assembly Bill 12 into law. In one fell swoop, Brown tripled the number of Americans who live in states where doctors can prescribe lethal medications to patients whom they expect to live six or fewer months. In his signing statement, he cited the letters he’d read from Brittany Maynard’s family.

“I do not know what I would do if I were dying in prolonged and excruciating pain,” Brown wrote. “I am certain, however, that it would be a comfort to be able to consider the options afforded by that bill. And I won’t deny that right to others.”

A saner approach to death in 2016?

In some ways, the 2015 changes to end-of-life policy in America were large. Medicare didn’t pay doctors to talk about death. Now it does. This year, 13.7 million people live in places where it’s legal for physicians to help terminally ill patients end their lives. Next year, that number will jump to 52.2 million people.

But in other ways, these changes are still quite small. Data from Oregon suggests that the number of people who use the California law, for example, will be relatively small. And advocates for end-of-life care planning see much work to do when it comes to ensuring that Americans’ preferences for care at the end of life are met.

Lee Goldberg directs Pew Charitable Trusts’ improving end-of-life care project, and he sees the new Medicare benefit as a first step rather than an end goal. There’s work to be done to ensure that doctors are equipped to have these conversations — and that patient preferences that do get recorded are easily accessible when patients have emergency situations.

“The odds are no better than chance right now, so that’s a big challenge, making sure this patient data is available when it’s needed,” he says.

Goldberg and others see 2015 as something akin to a proof of concept: proof that the American political system and state governments can pursue changes to end-of-life care policy without getting shouted down about death panels and rationing. This doesn’t guarantee future change but at least allows for the possibility. Because in 2015, it wasn’t impossible for Blumenauer to get the administration to pay attention to his pocket cards.

“It does wear you down sometimes,” he says of sticking with the issue for so long and seeing so little progress until now. “How many times do you answer the same questions on something that seems so compelling, and every year have the answer be no? But every year the case became stronger, and that’s more difficult to say no to.”

Complete Article HERE!