Sunday, May 19, 2013

Unwanted Care: Not the Way to Die

My attention today is turned to the "Conversation," the conversation that should take place between medical professionals, patients and their families, the conversation about terminal conditions, how long the patient might yet live—and under what conditions—and how the patient wants to die. Yet, we are told, that conversation most often does not take place, and too often aggressive, unpleasant medical procedures and treatments delay death and prolong suffering as long as possible. This story is also personal to me, as it is to many others. And if it is not yet, it may someday be personal to you, too.
 
This story is also about two Harvard doctors who are trying to change that. Drs. Angelo Volandes and his wife, Aretha Davis, are trying to produce clear, simple, matter-of-fact videos that effectively present the facts and care choices that the conversation might be expected to provide to terminal patients. But getting hospitals and doctors to use them is an uphill battle. Dr. Volandes:
[…] 'I think we're probably the most subversive two doctors to the health system that you will meet today,' [Dr. Volandes] says, a few hours before his shoot begins. 'That has been told to me by other people.' 
'You sound proud of that,' I say. 'I'm proud of that because it's being an agent of change, and the more I see poor health care, or health care being delivered that puts patients and families through—' [replies Dr. Volandes.] 'We torture people before they die,' Davis interjects, quietly. Volandes chuckles at my surprise. 'Remember, Jon is a reporter,' he tells her, not at all unhappy with her comment. 
'My father, if he were sitting here, would be saying 'Right on,'  I tell him. Volandes nods. 'Here's the sad reality,' he says. 'Physicians are good people. They want to do the right things. And yet all of us, behind closed doors, in the cafeteria, say, Do you believe what we did to that patient? Do you believe what we put that patient through? Every single physician has stories. Not one. Lots of stories.' 
--"How Not to Die," by Jonathan Rauch, The Atlantic (May 2013) 
It is also my father's story, and how and I finally came to have the conversation with him when none of the doctors did, when I could not watch his slow, suffering death-march any longer—and how, sadly, the author's father, among so many others, didn't have the conversation or any choices at all. The article moves us on:
'In the health-care debate, we've heard a lot about useless care, wasteful care, futile care. What we'—Volandes indicates himself and Davis—'have been struggling with is unwanted care. That's far more concerning. That's not avoidable care. That's wrongful care. I think that the most urgent issue facing America today is people getting medical interventions that, if they were more informed, they would not want. It happens all the time.' No one knows its extent, and few people want to talk about it.  
The U.S. medical system was built to treat anything that might be treatable, at any stage of life—even near the end, when there is no hope of a cure, and when the patient, if fully informed, might prefer quality time and relative normalcy to all-out intervention.   
In 2009, my father was suffering from an advanced and untreatable neurological condition that would soon kill him. Eating, drinking, and walking were all difficult and dangerous for him. He ate, drank, and walked anyway, because doing his best to lead a normal life sustained his morale and slowed his decline. "Use it or lose it," he often said. His strategy broke down calamitously when he agreed to be hospitalized for an MRI test. I can only liken his experience to an alien abduction. He was bundled into a bed, tied to tubes, and banned from walking without help or taking anything by mouth. No one asked him about what he wanted. After a few days, and a test that turned up nothing, he left the hospital no longer able to walk. Some weeks later, he managed to get back on his feet; unfortunately, by then he was only a few weeks from death. The episode had only one positive result. Disgusted and angry after his discharge from the hospital, my father turned to me and said, "I am never going back there." (He never did.)   
What should take place is The Conversation…[where] a doctor or a social worker sits down to explain, patiently and in plain English, his condition and his treatment options, to learn what his goals were for the time he had left, and to establish how much and what kind of treatment he really desired… Alas, evidence shows that The Conversation happens much less regularly than it should,…and when it does…patients and family don't really understand."  
[…] "Though no one knows for sure, unwanted treatment seems especially common near the end of life." [Which is doubtless a large part of the reason that over 40% of healthcare cost are incurred in the last year of life. GH] 
My father died just a year ago, ending a full life just a week short of 94 years. He was in an assisted-living community with my mom, who has dementia. He had COPD and was on an oxygen breathing tube continuously. His heart was functioning at about 25% and he had congestive heart failure. His kidneys were also functioning at 25%, and between that and the congestive heart failure, he retained liquid, lots of it. His hands and feet would become distended to the point of deformity, and his lungs would fill with liquid to the point that he struggled for enough oxygen to stay alive. Periodically, when his struggle and suffering became obvious enough, he would be sent to the hospital where they would remove a pint or so of liquid from his lungs with a large syringe. They would then keep him there for a few days and send him back until his suffering again became open and obvious.

Years earlier, my parents and I talked about the terms of their wills, and they both felt strongly that they did not want any heroic or artificial measures taken or equipment employed to sustain life. The term used in their living will was "do not resuscitate." But this was not a case of resuscitating my father, it was just about keeping him alive a little longer through a cyclical process that could not end his suffering, and when temporarily lessened, it returned faster the next time than the last. I bluntly asked the doctors, and they were candid with me about his terminal condition. A wonderful nurse, saddened by my father's suffering and clear fate, suggested I have the conversation with him, put his care in the hands of Hospice, and change the terms of his care to include, "do not hospitalize."

I sat with my father and had that conversation about his condition and choices: "You are dying, Dad, and the only question is how you want to spend the time you have left—going back and forth to the hospital ever more frequently with increasing suffering until you die in a hospital bed or, in the alternative, in your own bed with mom, your children and Hospice care. He chose "do not hospitalize" and Hospice care. He spent part of each day holding hands and talking with my mom. He received great, attentive care from Hospice who generously but responsibly assured painkillers eased his discomfort and suffering. When the time was near, my brother and I attended to him 12 hours on and 12 hours off along with the Hospice and assisted living staff. He died early one morning with the Hospice chaplain holding one hand and I the other as we prayed for him and our family.

He died about two weeks after his decision not to be hospitalized again, and not without some struggle and suffering, but not as much or as long as if he had continued the more desperate process of cycling in and out of the hospital until he died there.

I call that dying with dignity, and with the greatest comfort and most loving atmosphere for the man we all loved. It was that for him, but also for us. But it is not only patients and their non-medical families that have difficulty dealing with this most challenging and controlling process. Doctors' families do, too.
[A similar experience related by the author:] A few years ago, at age 94, a friend of mine's father was hospitalized with internal bleeding and kidney failure. Instead of facing reality (he died within days), the hospital tried to get authorization to remove his colon and put him on dialysis. Even physicians tell me they have difficulty holding back the kind of mindlessly aggressive treatment that one doctor I spoke with calls "the war on death." Matt Handley, a doctor and an executive with Group Health Cooperative, a big health system in Washington state, described his father-in-law's experience as a "classic example of over-medicalization." There was no Conversation. "He went to the ICU for no medical reason," Handley says. "No one talked to him about the fact that he was going to die, even though outside the room, clinicians, when asked, would say 'Oh, yes, he's dying.'" 
If it is this hard for doctors to navigate their parents' final days, imagine what many ordinary patients and their families face. "It's almost impossible for patients really to be in charge," says Joanne Lynn, a physician and the director of the nonprofit Altarum Center for Elder Care and Advanced Illness in Washington, D.C. "We enforce a kind of learned helplessness, especially in hospitals." I asked her how much unwanted treatment gets administered. She couldn't come up with a figure—no one can—but she said, "It's huge, however you measure it. Especially when people get very, very sick."
But why? Why is this simple exercise in thoughtful, helpful candor, this "conversation," so difficult for doctors and hospitals to embrace and take responsibility for? And if they just have neither the personality nor temperament for it, then why not embrace enthusiastically the videos so thoughtfully and competently prepared by Drs. Volandes and Davis? That just seems so clear and right to me. So, let's hear more about those videos:
The first film [Dr. Volandes] made featured a patient with advanced dementia. It showed her inability to converse, move about, or feed herself. When Volandes finished the film, he ran a randomized clinical trial with a group of nine other doctors. All of their patients listened to a verbal description of advanced dementia, and some of them also watched the video. All were then asked whether they preferred life-prolonging care (which does everything possible to keep patients alive), limited care (an intermediate option), or comfort care (which aims to maximize comfort and relieve pain). The results were striking: patients who had seen the video were significantly more likely to choose comfort care than those who hadn't seen it (86 percent versus 64 percent).
Volandes published that study in 2009, following it a year later with an even more striking trial, this one showing a video to patients dying of cancer. Of those who saw it, more than 90 percent chose comfort care—versus 22 percent of those who received only verbal descriptions. The implications, to Volandes, were clear: 'Videos communicate better than just a stand-alone conversation. And when people get good communication and understand what's involved, many, if not most, tend not to want a lot of the aggressive stuff that they're getting.'
His finished videos look deceptively unimpressive. They're short…bland…and meant to be banal. 'Videos are an aesthetic medium; you can manipulate people's perspective,' Volandes says. 'I want to provide information without evoking visceral emotions.' Any hint that he was appealing to sentiments like revulsion or fear to nudge patients toward a certain course of treatment would discredit his whole project, so Volandes does all he can to eliminate emotional cues. 
The typical video begins with Davis explaining what the viewer is about to see, stating plainly facts that doctors are sometimes reluctant to mention. She says, for example: People with advanced dementia usually have had the disease for many years and have reached the last stage of dementia. They are nearing the end of life. The video cuts to a shot of a patient. Then Davis outlines the three levels of care, starting with the most aggressive…Then she describes limited care and comfort care, again speaking bluntly about death. People who choose comfort care choose to avoid these procedures even though, without them, they might die. She concludes by recommending The Conversation.
 So, it would appear there is a clear, if not desperate, need for the videos. They are professional, understandable, and produced at very low cost. Most important, health facts and care choices are communicated with efficacy. So, again I ask, why not? The author:
[…] Routine use [of the videos], however, is far, far away. According to Volandes, only a few dozen U.S. hospitals, out of more than 5,700, are using his videos. I spoke with physicians and a social worker at three health systems that are piloting them, and all were very enthusiastic about the results. 
[…] The problem is not his product but the peculiar nature of the market he wants to push it into. His innovation is inexpensive and low-tech, and might avert misunderstanding, prevent suffering, improve doctor-patient relationships, and, incidentally, save the health-care system a lot of money. He goes out of his way not to emphasize cost savings, partly because he sees himself as a patients'-rights advocate rather than a bean counter, and partly because it is so easy to demagogue the issue, as Sarah Palin did so mendaciously (and effectively) in 2009, when she denounced end-of-life-care planning as "death panels." Anyone who questions medical maximalism risks being attacked for trying to kill grandma—all the more so if he mentions saving money. For all its talk of making the health-care system more rational and less expensive, the political system is still not ready for an honest discussion. And the medical system has its own ways of fighting back.
 But isn't it also worth noting that the practical result if these videos and the "Conversation" becoming routine is that a lot more hospital beds will likely be empty for longer periods, a lot more medical procedures will likely not be done, and less time will be consumed by doctors, nurses and technicians? But if that would mean less cost for patients and insurers, it would also mean less revenue for those hospitals and other medical and testing facilities, and less income for those doctors (or fewer doctors, nurses and technicians needed). Do you think that might cloud the thinking of those financially interested medical facilities and professionals, perhaps more than just a little?
 
Again, I repeat what I noted only in passing earlier: over 40% of all healthcare costs are incurred in the last year of life. And this whole process of dealing with diagnosis and terminal condition, alternatives for treatment, and the home comfort and pain-management approach with Hospice, may play a significant role in reducing those costs. But I don't expect the medical community to be enthusiastic advocates. Do you? For reasons of both medical culture and business culture, neither does the author:
During my visit, I realized that I had encountered Volandes's type before, but in Silicon Valley. Volandes has entrepreneurial obsessive-compulsive disorder: the gift, and curse, of unswerving faith in a potentially world-changing idea. 
It is not a huge exaggeration to say that obsessive entrepreneurs, from Cornelius Vanderbilt to Steve Jobs, made America great. It is also not a huge exaggeration to say that health care, more than any other nongovernmental sector, has made itself impervious to disruptive innovation. Medical training discourages entrepreneurship, embedded practice patterns marginalize it, bureaucrats in medical organizations and insurance companies recoil from it. And would-be disrupters are generally disconnected from patients, their ultimate customers: they have to take their innovations to physicians, who are notoriously change-averse, and then they must get the government—Medicare, first and foremost—to approve and pay for them. Imagine that Jeff Bezos, when he was starting Amazon, had needed to ask permission from bookstores and libraries. 
Volandes, therefore, will fail. That is to say, he will fail if success means revolutionizing the doctor-patient relationship and making the "Conversation" ubiquitous within five years. Meanwhile, if the American health-care system does not learn how to harness the energy and ideas of people like Volandes, it will fail. Somewhere between those failures lies a path forward. We know medical culture can change for the better; it takes the treatment of pain much more seriously than it used to, for example, and it has embraced hospice care. 
[…] I think of Dr. Woody English of Providence Health and Services, who is 67 and wants to make a difference before he retires. At his instigation, Providence has begun using Volandes's videos. "The changes will come locally," English told me, "not nationally." When I look at him and Volandes and the others, I see not only a test of whether the health-care system's medical culture can change but also a test of whether its business culture can change—and that change may, in the end, be even more important.
It's both. It has to be.


Link to The Atlantic article:

http://www.theatlantic.com/magazine/archive/2013/05/how-not-to-die/309277/
 

Sunday, May 12, 2013

Advice to Poets (and Others): Merwin On Berryman

This is about some advice given by poet John Berryman to student poet W.S. Merwin, and the poem Merwin later wrote about it. I share the poem here because there are elements of that advice that might speak to more of us than just the poets, writers and artists. But first some reflections on poets and mentors, especially Merwin and Berryman.
 
I have focused before on the mentoring influence of great poets on the work of great poets who came after them. But to be distinguished from the powerful and influential way that the poetry and prose of Ralph Waldo Emerson spoke across the centuries to Mary Oliver, is the influence of John Berryman on W.S. Merwin. Only 13 years older, and yet a generation apart, he was teacher and mentor to Merwin at Princeton. And how do we know the depth of the influence and regard felt for their respective mentors, regardless of the proximity of time or place? In the cases of Oliver and Merwin, both wrote insightful, honoring introductions—tributes really—to recently published editions of the work of Emerson and Berryman, respectively, and made reference to them in their own poetry. (And yes, such a poem by W.S. Merwin will follow.)
 
Berryman’s poetry can sometimes be difficult and often doesn’t appeal to me. Some would say that the strength of his poetry was uneven over the course of his career, with some earning little praise and some earning him the Pulitzer Prize. Most would agree, I think, that foremost among Berryman’s body of work is The Dream Songs, the related collection of poems which Merwin says, “suddenly arrived like a force of nature, unique and new.” But yet, I don’t see much of Berryman in Merwin’s work, earlier or later. Some might say Merwin’s work can also be a little difficult at times, but I don’t see that either, at least not in the same way.
 
But reading his introduction to The Dream Songs, you cannot doubt Merwin’s high opinion and importance placed on Berryman’s poetry, even among the work of an extraordinary generation of poets: “Berryman’s poetry, I believe, is among the major achievements of his gifted and bedeviled generation, and The Dream Songs—intimate, elusive, wild, unbearable, beautiful—are its summation.”
 
So, Merwin offers us a poem sharing and honoring some of the advice given him by Berryman about pursuing his art, about confidence and patience, about believing in yourself and your work, even when affirmation and assurance from others is in short supply. But yes, I find wisdom and direction here that speaks to all who feel a vocational calling or personal gift that begs for expression in a world that is largely indifferent to our decisions and pursuits. It’s the gift one Pulitzer-Prize-winner-to-be gave to another.
 
BERRYMAN*
 
I will tell you what he told me
In the years just after the war
as we then called
the second world war
 
don’t lose your arrogance yet he said
you can do that when you’re older
lose it too soon and you may
merely replace it with vanity
 
just one time he suggested
changing the usual order
of the same words in a line of verse
why point out a thing twice
 
he suggested I pray to the Muse
get down on my knees and pray
right there in the corner and he
said he meant it literally
 
it was in the days before the beard
and the drink but he was deep
in tides of his own through which he sailed
chin sideways and head tilted like a tacking sloop
 
he was far older than the dates allowed for
much older than I was he was in his thirties
he snapped down his nose with an accent
I think he had affected in England
 
As for publishing he advised me
to paper my walls with rejection slips
his lips and the bones of his long fingers trembled
with the vehemence of his views about poetry
 
he said the great presence
that permitted everything and transmuted it
in poetry was passion
passion was genius and he praised movement and invention
 
I had hardly begun to read
I asked how can you ever be sure
that what you write is really
any good at all and he said you can’t
 
you can’t you can never be sure
you die without knowing
whether anything you wrote was any good
if you have to be sure don’t write
 
 
I find in this a reminder that sometimes you just must do it (whatever it is), and do it with passion, because that is who you are, because it’s what you’re called to do, because it’s your journey. And you know it because it speaks to you from some unknown place at the core of your identity, and that is assurance enough. To ignore it is to become in some important way lost to who you are—and to leave a hole in the affairs of your time where you and your work were supposed to be.
 
*from Migration: New & Selected Poems, by M.S. Merwin (2005)
 

Saturday, May 4, 2013

For the Anniversary of My Death

About this poem by W.S. Merwin. With its fateful title and first lines, it begins with resigned acceptance of the inevitable, of what endures and all that passes, then reflects on the strangeness and surprising realities of this earthly sojourn: the small joys of life, our love, but also our profound failings. Yet in the end, he feels the rightness of a figurative nod or bow to the sensed but unknown authorship, creation’s process and purpose, whatever that may be. Or so he says to me.
 
For the Anniversary of  My Death*  
 
Every year without knowing it I have passed the day
When the last fires will wave to me
And the silence will set out
Tireless traveler
Like the beam of a lightless star
 
Then I will no longer
Find myself in life as in a strange garment
Surprised at the earth
And the love of one woman
And the shamelessness of men
As today writing after three days of rain
Hearing the wren sing and the falling cease
And bowing not knowing to what
 
 
(W.S. Merwin, a favorite, is a winner of the Pulitzer Prize for poetry and a former Poet Laureate of the U.S.)
 
*From his collection, The Lice (1967)
 

Thursday, May 2, 2013

Toomey: Background Check Plan Failed Because of Anti-Obama Republican Politics

It is what it is--or what it has become--but it's neither honorable nor defensible, nor in service of our country's express desires or best interests. It's ugly and disreputable, but it's apparently good politics in much of the Republican Party. It's part of what government has become in the US. And at it's heart, it's about denying a black, Democratic president with an African father and name any chance of leading or sharing in responsible government. With other Democratic presidents, these kinds of agreements have been easily brokered. But not with this president. The unspoken difference, the unspoken truth--in part at least--is that this time it is about a black president.
 
After all, this was not about denying hunters or gun enthusiasts any particular type of weapon, including assault weapons with high-capacity magazines, or the right to keep a weapon in one's home for protection. This was simply about extending the requirement for background checks required for sales by legitimate, registered gun shops to gun shows and on-line sales, the dark frontiers where anyone can buy any kind of weapon or ammunition without a background check.
 
And it should come as no surprise that those persons of questionable associations, convicted felons and the unstable will avoid legitimate gun shops and repair to those don't-ask-don't-tell sites to purchase their weapons of choice, and be exposed to no background check at all. That 90% of Americans, including American gun owners, supported this bi-partisan legislation brokered by Senators Pat Toomey (R-PA) and Joe Manchin (D-WV) should have been an overwhelming mandate for passage. You'd think. But in the end even the will of the people didn't matter.
 
That's because this was principally about one thing: denying a black, Democratic president with an African name any success at all--not even shared success in a negotiated deal brokered by bipartisan leadership, not even if those hurt most or put most at risk are the American people at large, and not even if the American people overwhelmingly supported the legislation.
 
Sen. Toomey shares with us the reasons for his failed initiative to broker what should have been an easy deal to reach. And in the past, with a different GOP and a white president, it would have been easy. But today, in the context of this Republican Party and this very talented, if very different president, there is no such thing. 

Link to article:
 
Toomey: Background check plan failed because of Republican politics