Mark My Words

We are now approaching a national election and the selection of our next President. (When I was in grade school, I was taught that the word President is capitalized when referring to the Commander-in-Chief guy, but not capitalized when referring to a president in any general sense. And yet, the president of a local club must be capitalized when used as a form of address, as when introducing President Beverly Aldopestandophanes of the local Muffin and Crumpet Society.)

So we will elect our next President this fall, and our next representative to Congress, and our next choice for senator from Maine, and then also the whole host of state and local officials.

We must not be complacent about the state and local offices. For instance, in order to gain enough party interest to support him in a run for Congress, Mike Michaud had to be elected to the Maine legislature and show his loyalty. Now that he is a member of Congress, he is virtually invulnerable. A few years ago, when Democrats held the majority in both the U.S. House of Representatives and the Senate, Congress had an "approval rating" of 11%. And what did the people of America do when the next election came around? Sent them all back! Why? Because the voters in every congressional district disapprove of everyone else's representative but believe their own to be a saint. If only 11% of shoppers approved of a new fashion, the manufacturer would be dumping a lot of unsold clothes onto the discount markets in tropical dictatorships. But if people shopped for clothes the way they do for Congressmen, only 11% would approve the fashion, but 100% of customers would be wearing it, because they hate it on everyone else but think it looks perfect on themselves.

Personally, I thought 11% was a generous rating on the part of those surveyed, but maybe it was a flawed poll. You've heard of flawed polls, of course.

I was once told of a rather large church (not in this part of the state) which ran a survey of its attendants, promising that the responses would be compiled so that no individual could be identified in the results. The survey asked such questions as: Have you ever stolen something? Have you ever hurt someone on purpose? -- questions like that. This was a church that had separate programs and separate study groups for the men and the women, so the groups of men and the groups of women each were each given a slightly different survey. One innocuous-sounding question -- we'll call it Question 22 -- asked the men: Have you ever looked upon another woman with lust? -- or something close to that.

All the responses were sent to the national church office, and a few weeks later a summary was returned to the local church, comparing its results to the national norms and so on. So the summary provided information such as: “41% of men and 12% of women admit to stealing, while the national average is 48% of men and 19% of women.” It gave similar sets of statistics for all the other questions.

The summary results for the men's Question 22, though, stated: “100% of men (in the local church) responded that they have been unfaithful to their wives, compared to 73% nationally,” (or something like that). If there was a similar Question 22 on the women's survey, it was forgotten in the aftermath.

The men had responded honestly, and, (they thought!), anonymously, to Question 22. The women had not seen the original question. They could conclude only that 100% of their men had admitted to cheating on their wives. If the result had been anything less than 100%, every one of the men could have slept that night. Looking with lust (the question) was reported as being unfaithful (the summary) and understood as cheating (the wives). Not one of the men was innocent.

The damage had been done. The wives all knew that their men had taken the survey. None of the men had bothered to mention to his wife that there had even been a Question 22 -- how is a guy going to bring that up over dinner? “By the way, Dear, that survey asked whether I had ever looked with lust upon another woman, and I replied honestly that I did. Once. A long time ago, you understand. Back when I still had teeth and could reach my own toenails.”

And so when the summary was revealed, no doubt a few men tried to qualify it by attempting to explain to their wives, after the fact, how the question had been worded, if he could even remember it. The uproar nearly destroyed several marriages and nearly closed the church.

A few evenings ago I answered the phone at home and took a survey regarding the approaching election. The caller was a young woman, phoning from somewhere in the deep south. She sounded nervous, like a girl who had been yelled at a lot in the preceding half hour. She was barely able to read the script, although that was clearly not due to nervousness but due to illiteracy. I seldom answer surveys and often hang up right away. But this girl elicited my sympathy, so I allowed her to continue.

She asked me only about Obama and Romney and about the Maine frontrunners for U.S. Senate. Clearly the survey had assumed who the candidates would be while they were still only nominees, before the conventions were even held. She read off the name of the Democrats' candidate for Senate -- I forget now who that is, then she read the name Charlie Summers easily enough, but when she reached the name Angus King -- the other Democrat -- she pronounced it (haltingly) “August” King. (Was I the first person she had called that evening?)

Her survey did not mention the candidates for the House of Representatives or any other office.

I have no idea who the company was that she represented; she told me the name, but it would have made no difference. It was a cheery-sounding company name made up from the usual buzzwords, like “Quality Results Endeavors” -- clearly something that every enterprising new start-up business would pay a consulting agency several thousand dollars to dream up. We never know for sure who these people are, anyway.

I did not correct her abuse of Angus. It was too gratifying. Independent in his funding, perhaps, but in his politics very true to his big-government roots, King merely holds the promise of more pandering to constituencies who are not at all independent in their thinking or self-sufficient in their expectations of government.

But then, once the national news media are ready to report the results of the one survey I responded to, we will all regard their report with great respect. This survey could accurately report -- from its incomplete analysis -- that 100% of respondents support either Obama or Romney, zero percent support any other nominee for President. True, since the survey writers had already buried all the other nominees before the conventions were held.

You’ve heard of other skewed surveys. How about this: If the price and quality were the same and you were given the choice today, would you buy bread made with genetically-modified grain, or bread made with organically-grown grain?

Well, who doesn't support organically-grown food? But the survey results are reported as: "Nationwide survey of shoppers supports the President's 600 billion dollar organic farm supplement program."

So forgive me for taking part in a poll. I had a lapse in judgment when I encountered the human side of survey-taking: the poorly screened, ill-prepared, likely under-paid temporary worker in a call center who, God bless her, was actually working for a living.

This was not at all what I set out to write about when I began this column, but that’s the fun of writing; the keyboard is not unlike a Ouija board, my fingers the players, and my mind the spontaneous influence that even I cannot predict. Next week, then. Perhaps.

This week’s column is about you and your death.  More precisely, it’s about you just before you die.  Your death will be an anti-climax.  And it’s about a few things you can do so that your final days won’t be filled with helplessness, mystery, and panic.  It’s also a column about how you can avert an out-of-control involvement when someone close to you reaches a state of helplessness and terminal decision-making.

It won’t cost you anything to read this nor to do anything afterward.  It will require that you pay attention to a few things between now and that far off time, almost an eternity from now of course, when the decisions are no longer yours to make.

It was through Carol, an RN whom I have known since the period during which we both worked at PVH, that I became aware of this book, The Best Care Possible, A Physician’s Quest to Transform Care Through the End of Life, by Dr. Ira Byock.  This is an overview, with extensive references from the text.  In fact, most of this column is a series of quotes from the book, which do little but to give you a hint of its content and importance.

I encountered Carol one day around the end of June, and she mentioned Dr. Byock’s book.  She told me an anecdote: She had acquired and read the book earlier this spring.  She was so moved by it that she wrote the author by e-mail, and not long after that she had the opportunity to attend an engagement in New Hampshire at which he would be speaking.  Before his presentation she spotted Dr. Byock near the lectern, approached him, commented that she had written to him, and mentioned her name.  He instantly remembered the correspondence and greeted her warmly.

Carol also told me that she had purchased and distributed a number of copies, including one for the Lincoln Memorial Library.

Generally, The Best Care Possible is a book about people for whom death is a looming reality, whether due to illness or injury, and the burden they place on America’s medical systems and the economy.  Concomitantly, it is a book about the role and benefit of palliative care as a medical option.  But it is especially a book about the responsibility we have as a society to make the cultural changes necessary to actually care for people who are dying, not just turn them over to the systems we have created which are inadvertently designed to depersonalize everything.

Dr. Byock uses numerous actual patient situations to illustrate the several themes that come together in the book.  Among the more prominent ones:

1) patients wanting to beat, cheat, and defeat death through a prolonged succession of medical interventions

2) alleviating suffering and giving the best possible care while a person with a terminal illness is dying

3) dealing sensitively with a dying patient’s loved ones

4) assisted suicide as a social phenomenon, not a medical option

5) the trend toward diagnosis-driven treatment, toward a legalized relationship between patients and doctors, toward satisfying the legal profession and bowing to one-size-fits-all government solutions at the risk of medical neglect

6) the advantages and issues of advanced directives

7) the federal government’s role in fostering a misunderstanding of the differences between palliative care and hospice

8) the role of community in handling the non-medical aspects of end-of-life care.

It was extraordinarily interesting to me that, even though the book is brand new, (published in 2012 and citing situations that happened in early 2012), and the author admits to left-leanings politics, there is no mention of the recently-passed “Affordable Care Act.”  While he drills home several points regarding public policy and needed regulation, the Act itself neither comes up as a step in the right direction nor as an impediment to the best care possible.  He is simply silent about it.

If there is one omission, one theme that I wish had been covered more fully, it would be to provide guidance on acceptance of dying.  I would have welcomed a couple examples of people who have neither resigned to nor embraced their impending end, but who are content with their lives and who have achieved an attitude of acceptance and peace.  Discussions of acceptance are certainly integral to treating patients in the practice of palliative care, especially where Americans are exceptionally afraid of death and loathe to terminate treatment until everyone is exhausted with the heroics.  I myself am comfortable with letting go when the time may come.  Those closest to me, who are named in my advance directive, already understand my wishes in that regard.

If there is one category of people who, I wish, had been discussed more fully, it would be the severely disabled.  It is on behalf of such an individual, my son, that I first became interested in the plight of Terri Schiavo (see my ironic, mordant essay about her at http://www.damnyankee.com/Writing/Writing/Take_or_Leave/TerriSchiavo/long_terri_schiavo.html), and by extension, interested in the best end-of-life care possible.

Since I borrowed a copy of The Best Care Possible, I made a pencil mark next to each of many paragraphs and transcribed them when I had finished.  (Then I erased the marks!)  I believe the quotes that follow give a sense Dr. Byock’s compelling message, and I have to say I discovered that I had already been of the same mind before I even opened the book.  That is, what he wrote fit perfectly with what my intuitions already told me.

Since I can’t say it better myself, here are some quotes from the The Best Care Possible:

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[Anything in square brackets are my own additions or substitutions.]

“Dying doesn’t cause suffering.  Resistance to dying does.”  -Terry Tempest Williams quoting her mother in Refuge. quoted by Dr. Byock on p. 57

DISCUSSING ASSISTED SUICIDE

To be sure, there have been plenty of patients whom I made sleepy with medications and some I rendered fully unconscious to ensure they were not suffering as they died.  Some people ask, "Well, what's the difference between that and euthanasia?"  Most concretely, the difference is that I have never injected potassium chloride to stop someone's heart or given a curare to stop a person's breathing and cause a person's death. p163

Alleviating suffering and eliminating the sufferer are very different acts. p164 [author’s emphasis]

[I]t would be less erosive to physicians’ roles and patients’ trust if proponents [of assisted suicide] kept doctors out of the process.  After all, [a doctor’s] expertise is needed only to certify that a person who desires the means for ending his or her life actually has a terminal condition.  The doses of drugs used to hasten death do no vary by age or weight.  Instead of a doctor’s prescription, responsibility for issuing permission to a certified patient to purchase a packet of lethal medications could be assigned to another civic authority, such as the county attorney or justice of the peace. p166

[S]eriously ill people who are hurting and scared usually already have the means to end their lives.  People with cancer or heart, liver, lung, or kidney disease usually have cabinets or drawers full of prescription medications for pain, sleep, or anxiety that, when taken in combination with alcohol, will provide a swift and painless exit.  Websites provide information on ways to do the job with tools as available as a car in a garage. p167

ADVANCE DIRECTIVES

[This is also called a living will, and is most important if you become totally incapacitated and more especially if you become totally and permanently unconscious.  It can direct whether you want all possible medical procedures used to keep your heart beating or whether you would accept comfort-giving care as your body naturally dies.  It also can direct whether you would donate your organs, and it names the individuals who you want to make decisions for you in your state of unconsciousness, while providing direction to them about your own wishes.]

[An advance directive: stating] who you would choose to speak for you and what your values and preferences are in case of life-threatening situations is important to providing you the best care possible. p172

TREATING DISEASE VERSUS LOOKING OUT FOR ONE’S WELL-BEING

[T]he diagnosis-driven, narrowly defined social response to people’s needs misses opportunities for preventing illness, alleviating distress, and enhancing people’s well-being.  The exclusively disease- and treatment-oriented nature of contemporary medicine causes dissatisfaction for patients and providers alike. p230

Today’s doctors practice under the scrutiny of business managers, payers, quality committees, and regulators.  They feel pressure to see too many patients in too little time. p230

Like everyone else in the workforce these days, physicians are accountable for what they do.  Rightly so.  Unfortunately, what they are held accountable for has usually emphasized volume over quality.  Physician economic productivity is measured in RVUs, which stands for relative value units.  RVUs accrue through both the time and the intensity or sophistication of specific services.  ...Whether or not their own incomes are affected by how many RVUs they generate, doctors are acutely aware that the more time they spend with patients in talking and counseling, the less revenue their practice generates. p231

In the presence of so many problems and needs, everyone at ground level – patients, their families, and physicians – reflexively assumes that the more medical care they can give or receive, the better.  There is now compelling evidence disproving that assumption. p234

THE CULTURE AROUND DYING, AND SOME THINGS THAT DO WORK

A factor more insidious than efficiency or profit leads doctors to emphasize high-intensity treatments over poignant conversations and counseling, shared decision-making, care planning, and end-of-life care: their aversion to talking about dying and death.  …[O]rdering more tests and treatments allows him or her to refocus on the disease and sidestep in-depth discussions with patients and their families about these morbid (or mortal) subjects. p237

[T]he medical profession has some explaining to do to the American public.  It is high time that American doctors take a hard look at the reasons we do what we do.  …[T]he Dartmouth Atlas group’s body of research identifies bright rays of hope…  Best-performing institutions and regions offer examples to emulate, in the form of practical strategies and model programs we can adopt or adapt to our local systems.  High-functioning, lower-cost health care systems are not rare; we know exactly where they are and can learn from them…  These systems and leading institutions do not skimp on services or accept lower quality.  Instead, they exemplify individualized, patient-centered care. p237-238

The Dartmouth Atlas group estimated that Medicare could reduce hospital costs by 28 to 43 percent by adopting the patient-centered, proactive approaches of the most efficient health care systems.  …[T]he cost savings were not even intentional.  Instead, the lower costs were merely a by-product of palliative care: the result of assiduously matching people’s values and preferences to achievable health goals and making those goals the focus of individualized plans of care. p238-239

[T]ransforming America’s broken health care systems will take political will and cultural leadership.  For the magnitude of change that is needed to occur, social activism is necessary. p239

[Note that Dr. Byock does not say the social activism needed is to support the 2010 Affordable Care Act, which had to be passed by Congress and signed into law before anyone could discover what was in it.]

Of course, dying is different from birthing.  [Referring to the public demand in recent decades for universal pre-natal care and the programs that have become widespread to promote responsible motherhood.]  It is different from “merely” needing dialysis, or even living with AIDS.  For one thing, there is no community of dying people.  Dying people die, and caregivers disperse, leaving no base for social or political action.  Being mortal is too broad a category to generate a special interest group.  There is no membership organization for dying people.  [AARP doesn’t want to taint itself.]  (Can you imagine the ads for such a group?) p241

WHAT WE NEED TO DO

Collectively, as voters and agents of accountability, citizens have vital roles to play in realizing transformative changes in America’s health care system.  …A change in federal law could finally dissolve Medicare and Medicaid’s arbitrary requirement that people give up treatments for their disease in order to receive hospice care.  (Medicaid has already dropped the requirement for children.) p247

In the quest to provide the best care possible for people who are elderly and frail, or chronically ill at any age, it is essential for Americans to fix our national and local health care systems.  But doing so will not be enough.  Within this sobering realization lie reasons for hope – by expanding the problem beyond health care, potential solutions finally come into view. p250

The tendency to professionalize basic care and social support is well intended, but insidious.  It makes care for people who are old, ill, dying, and grieving much more complicated and expensive than it needs to be.  That’s not the worst of it.  The medicalization of aging, dying, and grief ignores the innate, healthy human drive to care for one another.  It erodes core cultural roles and suppresses latent caregiving skills that reside within families and communities.  Even in a person’s dying – especially in a person’s dying – family and community comprise the proper context for a person’s life. p250

In his disturbingly insightful, yet hopeful, book The Careless Society: Community and Its Counterfeits, sociologist John McKnight pointedly made the case that progressive professionalization of normal life caused an erosion of natural, vital community responses to people who are ill, impoverished, or otherwise in need.  In McKnight’s view, doctors, psychologists, bureaucrats, and counselors are called on all too often to manage problems – through fee-based or tax-supported services – that people have been dealing with in families and communities for millennia. p258

[The author refers to the primary care physician and “medical home” as related, although not precisely inter-changeable.  He points out that a medical home would be able to provide or coordinate home health services: help keeping medicines straight, help with activities of daily living, regular nursing checks, home safety evaluations, and so on.]

[One patient's] story is not merely an example of what is wrong but, more valuably, an example of how readily secondary prevention could improve quality of care and life for frail, chronically ill people, while decreasing health care costs.  Secondary prevention refers to preventing complications of illness and averting crises for people in fragile health.  Simple things would have made a world of difference for [this patient].  If he had a primary care physician -- or medical home -- he could have received all his medical treatments consolidated under one roof.  This would have helped [him] with his medications and uncovered some if the daily problems he was having at home. p254

Strategic planners and consultants in business, government, and health care challenge their clients to "think outside the box."  In this case, two boxes need to be dismantled.  First, we must escape our fixation with diseases and health care rather than people's well-being.  Second, we must get beyond seeing people solely as [patients] and begin seeing people as individuals within families and communities. p254

THE INTERFERENCE OF GOVERNMENT

[Referring to a certain patient:] Until our team got involved, after a number of avoidable crises, there was no coordinated plan for taking care of [him] as a person, outside the realm of a patient.  There was no locus for such planning, and even if such a plan were developed, there was no repository to hold and make it available when needed.  His niece, minister, and senior center staff were each doing the best they could, and each had some insights about his needs and ideas for supporting [him] in living independently.  Yet they were not in contact with one another, nor were any of them in touch with his doctors.  For many month his life was harder than it needed to be.  A little person-centered coordination and planning would have gone a long way. p254 

...[O]ur current level of privacy is peculiar to recent times and Western culture.  Checking up and checking in on one another are what people in normal, caring communities do. ...It is morally and legally okay to show genuine concern for other people. p263

Something is amiss when out of concerns about legal liability, volunteers at a senior center or church are told they can no longer give elders a ride in their car to an outing, the supermarket, or a doctor’s appointment, barber, or beauty parlor.  When a town’s paid (certified and insured) transportation service is chronically understaffed, late, and unreliable, it is no mystery that frail elders are more likely to stay home and feel shut in and out of touch with their community. p260

[Staff people in doctors’ offices and hospitals routinely, servilely, and mistakenly invoke the Health Insurance Portability and Accountability Act as prohibiting this kind of coordination.  Coordination of care and continuity of care are permitted, and until the absurd secrecy implications are corrected by Congress, care givers need to take a practical and sensible approach to the lunatic elements of so-called HIPAA.]

Anthropologist Margaret Mead was once asked what she considered the earliest evidence of civilization.  She answered that it was a human thigh bone with a healed fracture that had been excavated from a fifteen-thousand-year-old site.  For an early human being to have survived a broken femur, living though the months that were required for the bone to heal, the person had to have been care for – sheltered, protected, brought food and drink.  While other animals care for their young and injured, no other species is able to devote as much time and energy to caring for the most frail, ill, and dying of its members. p254-255

RUOK (ARE YOU OK?)

Years ago, I learned about a program in Wilbur, Nebraska, called Telecare, which began out of concerns over the high rate of depression among rural elders who lived alone.  Telecare paired schoolchildren with older adults living alone.  Each morning the kids made a brief phone call to check on their older friend.  The program succeeded in enriching the lives at both ends of the phone.  Although it was remarkably effective, unfortunately the program succumbed to budget cuts… [The author mentioned other RUOK programs around the country.]  It’s as simple as that, but these brief, regular interactions let people who live alone know that they matter to others. p261

In terms of public health and public finances, secondary prevention of this sort is decidedly cost-effective.  For a caring society, investments in social support and basic health surveillance for frail elders pay high rates of return through avoiding emergencies, hospitalizations, and preventable complications. p262-263

GOVERNMENT’S ROLE, SOCIETY’S ROLE

As a nation and as states and local communities, we do need revised laws and regulations and new investments in our social infrastructure of care.  But these changes are merely instrumental.  The bigger challenge we face is not regulatory or statutory, but cultural.  Caring well for people through the end of life will require nothing less than a genuine social and cultural transformation.  Simply put, it is time for our culture to grow the rest of the way up. p267

Instead of bringing people together in a common purpose, how we die has become a polarizing subject, rife with acrimony and righteous indignation.  The irony would be funny if the social paralysis it caused were not so damaging. p273

For me the most socially damaging aspect of the assisted suicide debate is its power to conscript all the legislative energy and editorial page attention (both priceless and limited commodities) that might actually resolve the sorry state of dying in America.  The debate is a brawl on the lawn of a burning building. p274

Within the worldview in which I was raised, the primal social compact is not a contract; it is a covenant.  Human beings belong to one another before we are born and long after we die.  In a morally health society, people are born into the welcoming arms of the human community and die from the reluctant arms of community.  Within this covenantal experience, the well-being of others affects my own quality of life. p277

Yes, someday we are each going to die!  Let’s get over it – so that we can get on with seriously addressing the question, How shall we live? to the fullest extent. p278

In fact, a formal ethical principle and precept of palliative care holds that the practice of palliative care does not intentionally hasten death.  While not purposefully political, this tenet has deliberate cultural significance and, therefore, inevitable political implications. 

The founders of the discipline [palliative care] understood that the key distinction -- between letting terminally-ill people die and intentionally ending their lives – was essential to maintain public trust in the doctors and nurses who work in hospice and palliative care.  The wisdom of explicitly distinguishing caring for people from causing people's death is evident in our present times. p280

“…Rather, he chooses life without the burden of disproportionate medical intervention.” Joseph Cardinal Bernardin, R.C. archbishop of Chicago, quoted on p280

Surely, a moral and healthy society’s response to caring for people with advanced age or life-threatening conditions encompasses more than a person’s right to refuse medical treatments.  A fuller social and communal view of ethics would also clarify the circumstances and extent to which people must be accorded medical care – basic preventive care, as well as extraordinary life-prolonging treatments.  Even more important, a complete ethical framework would encompass whether and to what extent society must meet the basic human needs that people have as they approach life’s end.  Basic elements of human care underpin how we regard and respond to others – our ethics as people become sicker and more physically dependent: 

Shelter from the elements… 

Help with personal hygiene… 

Assistance with elimination… 

Provision of food and drink… 

Keeping company… 

Alleviating suffering…  [I]t is only this final element that is dependent on clinical expertise. p283-284 (emphasis added)

We all want “the best care possible” for our loved ones.  It’s time to determine what that means in some detail and bring citizen and consumer pressure to bear to get it done. p290

[end of quotes]

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I am confident that Dr. Byock would support this summary.  But this does not take the place of reading the book.  It is a book that calls for action, and that’s what this column is about.  But a summary like this fails to convey the human side of the author’s effort, for the people whose stories he uses, which comprise the first half or more of the book, are just like people we all know -- and just like we will ourselves be when it is our turn, each of us, to die or to be at the bedside when someone we love is slipping away.  Dr. Byock also manages effectively to give us the human side of the doctors and other professionals with whom he has worked to give the best care possible.

Read it, and let me know whether we can make a difference in our culture.  And remember: Think globally, act locally.

The Best Care Possible 

A Physician’s Quest to Transform Care Through the End of Life 

© 2012 Ira Byock, M.D. 

Avery 

a member of Penguin Group (USA) Inc. 

New York 

published by the Penguin Group