Patients with DNR (Do Not Resuscitate) orders more likely to die after surgery

A just-released study by Yale University finds that patients who had DNR orders were more likely to die after a surgery.  Yes, these patients were more likely to be sicker, but the study's author found that controlling for sickness (and other factors) did not even the scales. One of the researchers, Dr Roman, was quoted in the Courant:

"Of course the question is 'Why is that?'" she said. There may be other "non-spoken" factors, she said.


"Do doctors treat them differently? Do they try less hard? I don't think this really answers that question, but it does raise those questions."

The Courant also stated:

"The study further found that patients with DNR orders also suffered a greater percentage of complications due to surgery and required longer hospital stays."

Here's a concise definition of DNR by the Courant:

"Do Not Resuscitate is a legal document signed by either a patient or the patient's familiy, stipulating that 'extraordinary means' — such as putting the patient on a respiratory machine — should not be administered should the patient suffer a cardiac or respiratory arrest."

Here's a link to the article if you'd like to learn more about it:

http://www.courant.com/health/connecticut/hc-weir-do-not-resuscitate-0419-20110418,0,247026.story

Does Genetic Testing provide TMI?

I am sitting here listening to NPR's interview of the Pulitzer Prize winning authors and hearing their story about Children's Hospital in Wisconsin and the case of Nicholas and the medical team who decided to map his entire genome in order to diagnose his otherwise terminal disorder. (http://onpoint.wbur.org/2011/04/21/journal-sentinel-pulitzer) Which reminds me of a posting I saw earlier this week about a survey indicating "parents want gene testing" (http://www.bbc.co.uk/news/health-13099090)(http://blogs.wsj.com/health/2011/04/18/parents-kids-and-genetic-testing-for-adult-onset-diseases/) that was reported in the April Pediatrics journal.

Serious questions arise when these kinds of issues are raised - can the genetic information be truly definitive (in Nicholas' case, it was serendipitous that his DNA showed an abnormality); will genetic sequencing actually inform therapeutic decisions; will it change the course of a patient's disease? This recurring issue in medical ethics - the troubling intersection of what can be done with what should be done - is especially vexing when the psychological risks of too much information are so challenging to measure. What is known is impossible not to know . . .

The NPR piece speaks about relying on parents' consent to obtain detailed and potentially troubling information on behalf of a child - fueled by the dire need to get any and all diagnostic information to help their seriously ill child survive. But the Pediatrics article and survey reveal a far more troubling concern about relying on parental consent to obtain genetic information - information obtained on behalf of a child about the genetic likelihood of developing adult-onset diseases. Perhaps that is too much information for parents to have about their children? Perhaps this is too much information for children to know too soon? Is there such a thing as too much information?

Children's Hospital in Wisconsin has created a Committee that screens parents' requests for the diagnostic use of genetic sequencing. Not only does the request need to be presented by two physicians but the diagnostic information must be "actionable" - providing a therapeutic option. But the "science" of this genetic testing technology - what can be done and under what circumstances - must be tempered by the "ethics" of this technology - what should be done and what is really promoting the patient's, the family's and the wider community's "good"? (One caller, a Dana Farber research nurse, spoke of her concerns about equity and access to such testing when studies show minorities and the vulnerable are less likely to have access to such "high tech" sources of information.)

These are hard questions. I am glad Nicholas is doing better; I am worried that there may be other children for whom genetic sequencing will not provide the possibility of a real therapeutic option and yet highly-charged and sensitive information will be known, forever not to be unknown.

Ending life with warmth?

A poem about end of life and the desire to maintain dignity and warmth til the end.
Posted today by Garrison Keillor at http://writersalmanac.publicradio.org/

End of Days

by Marge Piercy

Almost always with cats, the end

comes creeping over the two of you—

she stops eating, his back legs

no longer support him, she leans

to your hand and purrs but cannot

rise—sometimes a whimper of pain

although they are stoic. They see

death clearly though hooded eyes.

Then there is the long weepy

trip to the vet, the carrier no

longer necessary, the last time

in your lap. The injection is quick.

Simply they stop breathing

in your arms. You bring them

home to bury in the flower garden,

planting a bush over a deep grave.

That is how I would like to cease,

held in a lover's arms and quickly

fading to black like an old-fashioned

movie embrace. I hate the white

silent scream of hospitals, the whine

of pain like air-conditioning's hum.

I want to click the off switch.

And if I can no longer choose

I want someone who loves me

there, not a doctor with forty patients

and his morality to keep me sort

of, kind of alive or sort of undead.

Why are we more rational and kinder

to our pets than to ourselves or our

parents? Death is not the worst

thing; denying it can be.

"End of Days" by Marge Piercy, from The Hunger Moon: New and Selected Poems, 1980 - 2010. © Alfred A. Knopf, 2011.

SOCIAL MEDIA: DO NO HARM

Several years ago, when my daughter suddenly and inexplicably lost her immune system, modern science and technology contributed to our successful outcome in countless ways. One was social media, specifically a Carepages blog, which connected us with an extended community in a time of extreme isolation, and played a considerable role in the healing.

We invited doctors and nurses to follow our Carepage, but few did. Those who did rarely commented. I didn’t appreciate the wisdom of the choice at the time. I do now.

Reading in the Boston Globe today about a Rhode Island physician fired for posting information online about a trauma patient, I felt sympathy for the doctor. (See http://bo.st/hDHFtZ)

From my experience being a parent in medical crisis to now, as a member of the Community Ethics Committee studying the perplexing issue of medical futility, I’ve developed great empathy for the relentless stress on doctors and nurses, and what must be a frequent need to vent. A computer or handheld device makes it so easy, and is such a bad choice.

The CEC studied use of social media, and though our March 2010 report dealt more specifically with that means of engagement with a patient by medical staff (the CEC saw it as a line best not crossed), we were aware that social networks are largely new and uncharted territory. We were hesitant to create guidelines for use by medical staff, because our report strongly discouraged their use in the first place. And yet clearly there are cases where certain social networks might be a useful resource.

But whether the communication is with patients, or with their own friends and network, doctors and nurses alike would be wise to heed this advice quoted in the Globe from a report in the Annals of Internal Medicine, by Beth Israel doctors and social media authorities Bradley Crotty and Arash Mostaghimi:

“Physicians should think of the Internet as the world’s elevator: Someone nearby is always listening in.”

PRESENCE OF MIND AT 101

Hans Keilson is 101 years old and still has the presence of mind to marvel at the contemporary literary sensation created by books he wrote nearly eight decades ago.

"Slowly, perhaps, there's a change happening inside me,” he told the Guardian in late 2010. “Maybe I did manage to produce something which goes beyond the everyday. It's not unusual for works of literature to be rediscovered decades after they were written. But the odd thing with my situation is that I am still alive while that's happening."

Keilson’s writing is exquisite. But why am I writing about him on a blog devoted to bioethics, and in particular end-of-life issues?

Because he’s alive into a second century, and in late 2010 still had the presence of mind to thoughtfully answer an interviewer’s questions.

Because of what he lived through in the 20th century, what he has lived to tell.

Because today is National Healthcare Decisions Day in the U.S., which is about care at the end of life, when few are blessed with articulateness such as his.

Because he’s a Jew and a physician who lost his right to practice either his religion or medicine to Nazism, but whose own humanity has survived into a second century.

Because the exhibit “Deadly Medicine: Creating the Master Race” has just opened at the Countway Library at Harvard Medical School.

But really why I’m writing about Keilson is because of the coincidence of my discovering him at a time when I was trying to comprehend the contemporary quandary over futile care and medical decision-making. In particular, one quotation from “Comedy in a Minor Key,” his novel about refuge from Nazism, has been haunting me since I read it a couple of months ago.

“I am always surprised how few grown men and women have actually really seen a dead body,” Keilson wrote. “That is, in normal times. A lot of people see one for the first time in their thirties. It’s strange. Everyone has a lot more to do with love, earlier and more often, of course. But they should have to see a dead body at least once a week. Then everyone would have a better sense of equilibrium, and lots of fears and anxieties would just disappear.”

I don’t know what else to say, except to recommend the exhibit “Deadly Medicine,” that National Healthcare Decisions Day inspire you to think about what you want at the end of life, and that you discover the mind and writing of Hans Keilson, if you haven’t already.

DEATH, TAXES & HARD DECISIONS

The annual national ritual of putting off taxes till the last possible moment concludes Friday amid long lines and anxieties at post offices around the country. Also Friday, in a federal appeals court in Pasadena, California, the tragic modern ritual of disputing how we die will be argued before a judge, many years after the death in question.

Where have you gone, Ben Franklin? It was Franklin who forever linked death and taxes as the inescapable pair, but even he couldn’t have envisioned this particular alignment on April 15, 2011.

Most disputes over end-of-life care end not in court, but with the patient’s death. But in Pena v. Meeker, the dispute has survived the patient by more than a decade.

Dr. Van Pena was terminated after a decade’s employment at the Sonoma Developmental Center. He says the firing violated his First Amendment rights, which he’d expressed by speaking out against and photographically documenting what he considered patient abuse and gross negligence -- the aggressive medical treatment of a woman for whom he’d signed a do-not-resuscitate order. The suit describes the patient as a 70-pound, 92-year-old woman with renal disease who had lost more than 30 pounds in four months.

For the Community Ethics Committee, how this court dispute plays out is of particular interest, because to read the court document (http://bit.ly/hZH0mT) is to revisit themes from studies we’ve already completed (Withholding Non-therapeutic CPR, Palliative Sedation – Continuous Deep Sedation as Comfort Care until Death) and from the one we’re just now undertaking on medical futility. There also are questions around decision-making capacity and an advance directive.

It was via attorney and futility expert Thaddeus Pope’s blog (http://bit.ly/goMECx) that I learned of the Pena case. “The actual basis for dismissal, argues Pena, was retaliation in violation of civil rights,” Pope writes. “Pena lost after a jury trial in November 2009. But one ground of appeal is that the trial court did not permit him to adequately present his medical futility argument to the jury.”

As we begin our futility study, the CEC is wrestling with how to consider the role of money in care. The subject of money tends to be avoided as too toxic, but if money isn’t the elephant in the room, it’s one in a small herd.

Interesting note: Failing by a day to coincide precisely with Tax Day and Pena’s appeal is National Healthcare Decisions Day. This national event, on April 16, is part of a movement to encourage advance care planning and creating advance directives.

How will you make your wishes known when you no longer can speak for yourself?

COMMUNICATING IN TIMES OF TRANSITION

Yesterday, Community Ethics colleagues and I met with maybe 30 surgical ICU doctors and nurses at Massachusetts General Hospital. We discussed the increasingly complex end-of-life decision-making process at a time when technology can maintain a pulse and breathing long beyond when patients could have done so on their own.

This morning, my wife and I presented a forum at our daughter’s elementary school. There were maybe 30 parents, officers from the local police, and the vice principal. We discussed the increasingly complex cyber world that can bring strangers into the bedroom, bullies onto a small screen, via devices our children understand better than we do.

There must be a word for an echo on a blog -- a blecho, maybe. Do you hear it? I do.

With a dying patient, the difficulty can be knowing what the patient would want, when that patient is beyond communicating. Similarly, there’s difficulty in ascertaining what is going on in the social life of an uncommunicative teen. Both are in compelling transition: one to life’s end, the other to adulthood. Neither is a time of great clarity. Both involve power struggles, loved ones facing hard choices, and require ongoing communication, trust, and respect -- when none of those come easy.

A cyber-savvy police officer said at the school forum: “Technology will change every day. But the fundamental (coping strategies) won’t change.” And, “Today, communication has to be increased 100-fold with your child.”

I’m thinking that in both cases, a simple list of fundamentals would be helpful. This is what Atul Gawande writes about in “The Checklist Manifesto.”

So what’s on your list of fundamentals for end-of-life care?

In Texas, Death-row inmates have fewer rights than domesticated animals

"...veterinarians in Texas are prohibited from using the combination of drugs that the Texas Department of Criminal Justice has deemed suitable for the execution of human beings..."

See the full article here:
    http://www.theatlantic.com/national/archive/2011/04/in-texas-a-brave-new-lethal-injection/236800/

NATIONAL BOOST FOR PALLIATIVE CARE

The hospice and palliative medicine blog Pallimed reports (and celebrates) that the Joint Commission in Fall 2011 will begin recognizing hospitals with exceptional palliative care programs. (http://www.pallimed.org/2011/03/joint-commission-finally-accredits.html)

The Joint Commission accredits more than 17,000 health care organizations in the U.S., and many states require the accreditation in licensing and Medicare reimbursement.

“This is really important for many reasons,” writes Dr. Christian Sinclair, hospice and palliative care physician and blogger based in Kansas City. “Many hospitals may claim to have palliative care teams, but the members of the team, internal support and integration into hospital culture can vary widely as many who have worked with palliative care programs have seen.”

Indeed, though palliative care’s impact is increasing as public understanding grows and hospice fears subside, the practice remains ghettoized in many systems.

“I do like the (Joint Commission’s) emphasis on the whole hospital program and not just the team,” Sinclair writes. “This may set some higher standards than all teams will be able to accomplish, but then I think that makes all of us strive to do better. ... The suits in the C-Suite might find a new interest in what your program is doing and hopefully (fingers crossed) you might get the resources and staffing to achieve it!”

His optimism notwithstanding, Sinclair took not of this irony: the new cert program’s home is in Disease-Specific Programs. “Palliative care is about people,” Sinclair writes. “I guess we have to keep on educating.”

MANITOBA REJECTS CONSENT & CAPACITY BOARD

Adult siblings and a physician who could not agree on the end-of-life care of Samuel Golubchuk are somewhat in alignment now, nearly three years after the man’s death, over the perceived shortcomings of a provincial response to their dispute.

A working group’s recommendation that the Canadian province of Manitoba legally empower a panel to settle disputes between patients, their families and doctors was rejected. Other recommendations were accepted, especially the call for public education, improved doctor-family communication, and promotion of advance directives. (To read the reports: http://www.wrha.mb.ca/healthinfo/reports/endoflife.php)

The Golubchuk case underscores the complexity of resolving end-of-life disputes, pitting a doctor and hospital’s professional ethics against an individual’s religious beliefs. At its core are questions of autonomy, nonmaleficence and ultimately the sanctity of life. The toxic role of economics seemed not relevant to this case, and yet media coverage within the pro-life community has portrayed the hospital’s wish to withdraw mechanical life support as a choice for the bottom line over life itself. Such are the depths to which the dialogue can degenerate in such a case. Under a court order to continue life support, Dr. Anand Kumar instead resigned from Grace Hospital, and Golubchuk’s care, which he called “immoral” and "tantamount to torture."

According to CBC News, Kumar supported creation of a review board with legal authority. In this, he agreed with Golubchuk’s daughter, Miriam Geller, who told CBC News that doctors still have the final say in dispute with patients and families. A review panel to decide disputes would have been a better solution, she said.

In rejecting the proposed review panel, Manitoba has opted not to follow the lead of Ontario, where a Consent and Capacity Board has been established -- and only recently, in a case with some similarities, ruled for the family at least in part because physicians had not taken the family’s religious beliefs into account.

The Consent and Capacity Board, which notably doesn’t include physicians, gives Ontario a way to resolve such cases more expeditiously than a court, where patients tend not to survive till trial. Golubchuk, in fact, died while on life support before that dispute reached trial.

Ontario law requires that a patient’s beliefs, values and wishes for care be taken into account in determining the patient’s best interests. I found nothing in the report indicating Manitoba will follow suit (though perhaps this will come through the recommended education and communication). The Golubchuks’ Orthodox Jewish beliefs were central to the dispute, and I’d hoped to see the report address this. Indeed, in my own survey of online media coverage of Golubchuk, I noted many references to the family’s religious opposition to hastening death, but none to the Jewish prohibition against prolonging dying. I’d hoped to see a specific recommendation that in such cases, pastoral support be brought in to improve understanding in both sides of the dispute.

The report and recommendations are thoughtful and worth reading for anyone interested in the complicated terrain of end-of-life decision-making. The review of literature and case studies was extensive. And stopping short of empowering a review panel, in response to those few cases that become stuck in dispute, may prove wise.

And yet, according to the CBC, the College of Physicians and Surgeons of Manitoba has drafted rules for its doctors that say no patient can demand life-sustaining treatment. That’s one more indication this problem isn’t soon going away, in Manitoba or elsewhere.

"Look at the one-year period that in our case, the Golubchuk case, was between the time initial filing was made and the time they scheduled the court case. It was one year for a dying patient," Dr. Kumar told CBC News. “My own personal feeling is that a Consent and Capacity Board similar to Ontario or similar to what's down in Texas is a very good, very open process."

Innovative palliative care offers hope to families of seriously ill children - The Boston Globe

Palliative care for children does not require parents to stop treatment that could halt or slow the progression of their child's disease. A new approach allows in home hospice care for children that includes palliative care while children are still undergoing treatment. The Pediatric Advanced Care Team at Children's Hospital in Boston helps families balance the blessings and burdens of treatment while pursing both treatment and comfort care. For more information in Masachusetts, go to www.hospicefed.org or call 800-962-2973. For palliative care nationally, go to www.caringinfo.org or call 800-658-8898.
Below is a link to a video about this innovative approach.

www.boston.com/health

"COMMON SENSE" IN MASSACHUSETTS

I was glad to see the Boston’s Globe editorial endorsement for the “common-sense series of recommendations that all sides of the end-of-life debate can support” from Massachusetts health officials. I was inspired to improve my own understanding of

the end-of-life dialogue, and read online about the Quinlan and Cruzan cases, and the Patient Self-Determination Act of 1991. I won’t revisit those here, but was struck by two things:

In both Quinlan and Cruzan, the physicians and hospitals opposed removal of life support, and the parents had to fight in court to allow death to occur. This is a reversal of how such extreme cases are playing out today, and I’m not sure what that says.

The second is not a reversal, but more of the same. The PSDA of 1991 took an important step in encouraging the education of patients regarding advance directives, but notably left out one significant player -- the physician. Twenty years later, the physician’s role in this conversation remains too controversial to include in Medicare policy.

This seems to underscore the importance of Massachusetts’ effort to encourage the doctor-patient dialogue, and to increase the role played by palliative care specialists.

Here’s where to find the Globe editorial:

http://www.boston.com/bostonglobe/editorial_opinion/editorials/articles/2011/03/23/at_end_of_life__more_planning_more_counseling_more_dignity/

PETER SINGER ON MARAACHLI RESCUE

Princeton bioethicist Peter Singer offers his unique view into the recent rescue to St. Louis of 13-month-old Joseph Maraachli from an Ontario, Canada hospital, where the parents had lost their appeal for aggressive medical treatment. The combination of Singer’s perspective and reader response is quite powerful.

http://www.nydailynews.com/opinions/

2011/03/18/2011-03-18_attempted_rescue_of_baby_joseph_maraachli_prolife_poster_child_is_deeply_misguid.html

DEATH HASTENED OR PROLONGED?

As the Community Ethics Committee undertakes to comprehend and sort through the brutally hard questions around medical futility, a story this past weekend in Toronto Star posed the quandary this way: “Who decides when critically ill patients should be left to die without medical intervention or given every chance to live? Doctors? Patients? Family?”

Twice in recent weeks, a board representing the Canadian province of Ontario has been asked to resolve what critical care doctors and families could not. One patient is a 13-month-old, the other an elderly man, but both are at the end of their lives. And both cases pit the Catholic faithful against medical judgement.

The Star writes: “A lack of legal and ethical clarity around the end-of-life question in Canada has made the decision-making process a perplexing minefield. There are no clear provincial, federal or medical protocols to break the deadlock when the wishes of patients and their families come into conflict with the medical judgment of physicians.’’

The Star told the story of Maria and Desmond Watson, a couple married 69 years. Desmond has spent more than a year at Oakville Trafalgar Memorial Hospital, where the dispute between doctors and Maria over whether to continue aggressive care to keep him alive was decided on Monday in Maria’s favor by the Consent and Capacity Board.

The CCP is a provincial board certain to set off “death panel” alarms for those given to such demonization of humans making hard decisions. According to a provincial website, it consists of psychiatrists, lawyers and members of the general public, and is charged with hearing and resolving health-care disputes largely over consent and decision-making. The CPB only recently denied an appeal by the parents of Joseph Maraachli to force a London, Ontario hospital to perform a tracheotomy on their 13-month-old son, so that he could die at home. “Baby Joseph,” a cause celebre for the pro-life movement, this week was transported by private plane to St. Louis, where a Catholic hospital is expected to perform the tracheotomy.

The organization Priests for Life sponsored the child’s transfer. Rev. Frank Pavone said Joseph "needs to be in a hospital that cherishes life over the bottom line.” Priests for Life will ask supporters to fund this, and such is the dramatic portrayal of Joseph’s rescue on its website that you’d think it was the Raid on Entebbe.

Cost was never mentioned in the hearings regarding Desmond Watson’s fate. And yet the Star reported that Maria “has a stack of bills from the hospital for $700 a day. They began coming in September after she refused to have him discharged to a long-term care facility she says was unequipped to handle his needs. At that daily rate for care, Desmond’s 14-month stay at Oakville Trafalgar rings in at about $300,000 so far. She’s ignoring the bills.”

Maria wonders, “What am I going to do?”

On so many levels, that truly is the question.

According to the Star, Ontario law requires that an incapable patient’s values and beliefs and previous wishes for care be considered in determining their best interests. But during the hearing, Watson’s medical team admitted never having even inquired about Desmond’s values or beliefs. Monday’s ruling for the surrogate is perhaps attributable to this profound oversight. “By any objective medical standard, Mr. Watson should be allowed to pass,” the family’s lawyer, Mark Handelman, said. “Except that’s not how we make decision in this province. We factor in a person’s values and beliefs. That did not happen in this case.”

Both the Maraachlis and Watsons are devout Catholics, but a case could be made that their doctors’ recommendations against a tracheotomy and to discontinue aggressive treatment align well with church teaching.

According to Catholic Catechism: “Even if death is thought imminent, the ordinary care owed to a sick person cannot be legitimately interrupted. The use of painkillers to alleviate the sufferings of the dying, even at the risk of shortening their days, can be morally in conformity with human dignity if death is not willed as either an end or a means, but only foreseen and tolerated as inevitable. Palliative care is a special form of disinterested charity. As such it should be encouraged.”

And: “Discontinuing medical procedures that are burdensome, dangerous, extraordinary, or disproportionate to the expected outcome can be legitimate; it is the refusal of "over-zealous" treatment. Here one does not will to cause death; one's inability to impede it is merely accepted. The decisions should be made by the patient if he is competent and able or, if not, by those legally entitled to act for the patient, whose reasonable will and legitimate interests must always be respected.”

This teaching seems to fit within Judaism’s dual prohibition against hastening death and prolonging dying.

On Monday, palliative care physician Brian Berger told the Star that his hospital, York Central, encourages an early palliative care consultation with patients. “Having borne witness to thousands of deaths, it takes a lot of love to want someone here forever but more love to know when to let go. Letting go is the ultimate form of love, and if you are a religious family you must know that he or she will go to a better place.”

“It is an uphill battle dealing with families who have unrealistic expectations of their loved one’s prognosis and return to a normal life,” Peter Huggonson, an intensive care nurse at Toronto General Hospital, told the Star. Huggonson said he has “seen veteran bedside nurses almost in tears because they believe they have reduced themselves to the level of a torturer.”

Designing & producing children to save their siblings... heroic or awful... or both?

"The country’s first "saviour sibling", a healthy boy whose discarded umbilical cord will help heal one of his two siblings from a genetic blood disease, has brought complicated ethical issues over biotechnology to the forefront in France." - France 24

http://www.france24.com/en/20110208-france-first-saviour-baby-donor-biotechnology-stem-cell-research-clamart-umut-fryman

Five Wishes

I've been hearing about the Five Wishes with increasing regularity, either in my own research of end-of-life issues or conversations at my church. And when I visited the Aging With Dignity website to learn more, I came upon this recent letter from the non-profit's president, Bill Malley. I found it insightful, and so post it here.

January 5, 2011

“Aging with Dignity is disappointed the Centers for Medicare & Medicaid Services chose to withdraw its new guideline that added voluntary advance care planning to the roster of topics to be covered during annual Medicare-paid physician visits. However, we are greatly encouraged in knowing that many forward-thinking physicians will continue to raise this important issue with their patients, whether or not they are directed to do so. Advance care planning, end-of-life care, palliative medicine and hospice care are worthy subjects of discussion in and of themselves and ought not automatically be dismissed as components of ‘death panels.’

“As the largest provider of advance directives in the nation, Aging with Dignity believes that good advance care planning is always patient-centered and begun between and among family members. The best advance directives are those that are easy to understand and use and allow patients to decide for themselves what is wanted or not wanted. Physicians and other health care providers should assist, not direct, this process.

“Americans do not require government permission or guidance to begin important family conversations about end-of-life care preferences. Indeed, the best hope for overall improvement lies in more people themselves taking the initiative to complete an advance directive. Federal and state officials can do their part by removing the remaining statutory and regulatory barriers to effective and patient-centered advance care planning.”

Link:

www.deathwithdignity.org

WHEN PROMISE OUTGROWS A CLINICAL STUDY

Positive results from fetal surgery for spina bifida were such that a study at UC San Francisco was discontinued so more could benefit. But long before faith in the surgery got to that point, the practice was limited to allow for the study. This is only one of the study’s bioethical complexities debated in Pam Belluck’s piece in the New York Times (“Risk and Reward in Utero, Feb. 12, 2001, Week in Review).

http://www.nytimes.com/2011/02/13/weekinreview/13belluck.html?_r=1&hpw

Encouraging the end-of-life dialogue

For nearly two weeks, an 1,800-pound pallet of cork flooring has been been sitting in a warehouse in Easton, Massachusetts, waiting to be loaded onto a truck and delivered 25 miles to my home. Successive snow storms and their aftermath have complicated this, but the shipping company won’t come out and say how backed up things are, so they apologize and promise that delivery will be made the next morning, but it never is. They seem to be telling me what they think I want to hear, and making promises they can’t keep.

It’s only cork flooring we’re talking about. Why is it so hard to tell me the truth?

Yesterday, while waiting again for my cork to come, I read in the Boston Globe an Associated Press story about the American Society of Clinical Oncology and its efforts to encourage the doctor-patient discussion of care at the end of life -- when the truth is understandably hard to tell and to hear.

Reporting related to the end-of-life conversation tends to become overheated, and even this AP story made passing reference to the “death panels” furor of 2009. It’s refreshing and even hopeful to see a high-minded and professional approach such as ASCO’s getting significant media play. The brochure is downloadable as a PDF at http://www.cancer.net/patient/Coping/Advanced+Cancer+Care+Planning.

In practice, these end-of-life conversations are routinely avoided or delayed. Disbelief and anxiety often accompany a terminal diagnosis, making the subject difficult to broach, even for doctors with the requisite communication skills. And yet palliative care has been shown to improve quality of life, and in combination with chemo even to extend life among advanced cancer patients. The imperative to begin this conversation early is clear. With so many expressing a wish not to die in a hospital, this conversation can reduce urgent transfers from residential care to hospital ICU.

According to the oncology society, fewer than half of advanced cancer patients have an honest, straightforward conversation with their doctors about care choices and expectations. As a result, more patients receive aggressive chemotherapy at the end of life, with little or no therapeutic benefit, and spend more of their last months hospitalized. For many of them, to accept palliative care is to abandon hope.

ASCO’s brochure is titled “Advanced Cancer Care Planning: What patients and families need to know about their choices when facing serious illness.” It begins with promising clarity: “Advanced cancer is cancer that cannot be cured. It may be referred to as end-stage or terminal cancer. However, incurable does not mean untreatable. People with advanced cancer continue to have options for treatment and can maintain a good quality of life.”

Treatment options -- standard therapies, clinical trials, palliative/supportive care and hospice/home care -- are spelled out simply and clearly. Families receive guidance in dispute resolution: “Does the patient understand the risks of treatment and the potential consequences of his or her choices?” “Are the patient’s wishes openly stated and being respected?” “Is this treatment in harmony with the patient’s beliefs and values?”

Even when these conversations begin early, achieving real understanding between doctor and patient is difficult, and requires clarity of language. The brochure is helpful with this. Indeed, it clarified my own understanding of palliative and hospice care: “Palliative care is given at every step of the treatment process and at all stages. Hospice care is a form of palliative care given to people with cancer who are expected to live six months or less, regardless of their age or type of cancer. When the time is right, palliative care specialists will help you make the transition to hospice care and help you address the physical and emotional issues that come with that choice.”

The brochure was preceded in late January by an ASCO policy statement underscoring the importance of the end-of-life conversation, and it will be followed later this year by guidance on how doctors might start this kind of conversation, and when. The conversations can be “the hardest thing a doctor ever does,” society president George Sledge Jr. told the Wall Street Journal Health Blog. “Not all physicians are equally good at discussing (end of life).”

Though the harsh revelation of impending death in unavoidable, the end-of-life conversation can save patients and families pain and anguish. To accomplish this worthy goal, the oncology society says, quality of life must be a priority at all stages of advanced cancer care; doctors and patients should discuss prognosis and treatment options soon after the initial diagnosis of advanced cancer; and patients should understand the possibilities of clinical trials.

This makes such good sense, it seems obvious. Delaying the conversation puts the patient’s wishes at risk.

"This is not a 15-minute conversation, and it should not happen in the back of the ambulance on the way to the ICU at 3 in the morning," society chief executive Dr. Allen Lichter told the AP. "When everyone is well and has their wits about them, it's time to start the process."

RELIGION & THE END OF LIFE

Attached is a link to Nicholas Kristoff’s column in the NY Times (Tussling Over Jesus). It is an insightful look into an abortion controversy involving a hospital, an ethics committee, and the Catholic Church, with comments in response on line. It caught my eye in relation to Community Ethics Committee’s work because in researching medical futility and advance directives, I’ve been struck by the depth of emotion, opposition and us-vs.-them language from pro-life news sources regarding end-of-life-related health care policy changes. These “slippery slope” fears seriously complicate resolution to bioethics questions, and aren’t going away anytime soon. What’s the way forward?

http://www.nytimes.com/2011/01/27/opinion/27kristof.html?adxnnl=1&adxnnlx=1296144431-C/z04B3hQqx1XAhgR4cCrQ

Dr. Nash's perspective on palliative care issues

Dear readers,
One of our most poignant areas of research is palliative care - providing care to alleviate suffering,
often used in end-of-life care. I just ran across this abstract (and accompanying podcast) by Ryan R. Nash, MD, at the University of Alabama at Birmingham.   Nash states,  "Some in the movement have changed the responsibility of a physician from caring for the patient to eliminating a patient’s suffering. This new proposed responsibility demands success that is not possible without a willingness to render a patient unconscious or to cause their death."

What do you think?  Is it wrong to make a patient unconscious if it is the only way to alleviate someone's intractable suffering?   Is suffering a part of the dying process that we should just accept, even if it seems unbearable?

Click here for Nash's 15-minute audio podcast from the 2010 annual Center for Bioethics & Human Dignity conference:

      http://cbhd.org/content/enhanced-dying-exploring-dangers-palliative-care-moving-beyond-therapy

Abstract: The palliative and hospice movement have helped ensure quality care for patients with advanced and terminal illness. What began as a nursing led, volunteer run service for the dying has moved to the health industry and to the academy. This good movement is growing in its scope and ability. However, with this growth has come an ethical challenge to the limits of medical therapy directed to relieve the suffering of a dying patient. Some in the movement have changed the responsibility of a physician from caring for the patient to eliminating a patient’s suffering. This new proposed responsibility demands success that is not possible without a willingness to render a patient unconscious or to cause their death. This presentation will address how changing definitions of death, institutionalization of death, dualistic anthropology, and this new responsibility of medicine can encourage care beyond therapy to intentional sedation and assisted death. Corrected definitions and processes will be offered that will encourage responsible care of patients without violating accepted ethical standards.

THE GOLUBCHUK CASE: FAITH & FUTILITY

Grace is the name of the hospital where Samuel Golubchuk died. Grace in no way is descriptive of the path his death took.

In my last post, I wrote about distrust of doctors and the American health care system. The extent of that distrust can be jaw-dropping, especially living as I do near Boston, where patients come from around the world for health care. Clearly, not everyone distrusts doctors and large systems.

In my own nascent study of contemporary medical care for dying patients, I’ve belatedly discovered the case of Samuel Golubchuk in Winnipeg, Manitoba, where a medical board overseeing health care in and around Winnipeg had attempted to inject order into the medical futility chaos. The board essentially gave physicians and hospitals veto power over patients or their surrogates in end-of-life decisions.

Golubchuk had suffered a catastrophic brain injury, and in late 2007 his condition was complicated by serious conditions deemed irreversible after he was moved to Grace from a residential care facility. When ICU doctors at Grace wanted to remove him from life support, his two adult children disagreed, and successfully sued to force care to continue. The family said removing the ventilator or feeding tube would violate his beliefs as an Orthodox Jew by acting to hasten his death. And though the family succeeded in getting a temporary injunction to force care to continue, three doctors resigned rather than continue the court-ordered care (half the ICU physicians), and Samuel Golubchuk was on life support when he died in June 2008 at age 85. After their father’s death, the brother and sister dropped the suit.

After the three colleagues resigned, another physician met with the family and their lawyer, and volunteered to oversee Golubchuk’s care. Days later, he delivered a eulogy and was a pallbearer at Golubchuk’s funeral. “I was honored and privileged to care for him,” the doctor told the mourners.

A reference from months earlier, in February 2008, caught my eye. It was from a story on LifeSiteNews.com: “The 84-year-old cognitively disabled patient’s family has been battling hospital doctors who are determined to starve and dehydrate him to death regardless of the family’s wishes.” Such a straightforward, journalistic writing style, and a matter-of-fact way of ascribing murderous intent to the doctors. The writer might have referred to Golubchuk as a dying man, but went instead with “cognitively disabled patient.” And perhaps the physicians might have been given a nod for compassion rather than being “hospital doctors determined to starve and dehydrate him to death.”

Consider that people at the end of life naturally stop eating and drinking. Forcing fluids when dying is in process can itself be cruel and painful, and no one knows this better than a doctor in ICU -- except maybe an ICU nurse.

I know little about these Canadian doctors, and perhaps they are equal parts Jack Kevorkian and Hannibal Lecter. I have my doubts, and question the motives behind media portraying them as having no regard for the sanctity of human life. This is dehumanizing and unfair.

In the opinion of the physicians, basic care of Golubchuk had ceased to be therapeutic, and made the transition to bad care. Though medical professionals regularly administer painful treatments, it is with the assumption of therapeutic purpose. Remove that purpose, even in dispute with family, and they are pointlessly inflicting pain on an elderly dying human. Such was Golubchuk’s physical state that changing his dressing or catheters was “tantamount to torture,” according to the attending who resigned. But hardened ideology demands dismissing “torture” as overstatement. As one web commenter wrote: “What I don't like is doctors exaggerating the level of pain their treatment is causing. It's obvious that doctors in Manitoba ... really are pushing for legalized killing.” The comment was as telling as it was anonymous.

Nowhere in the various media reporting on the case could I find the voice of an ICU nurse involved in Golubchuk’s care. And if I trust anyone’s judgement on whether the man’s care was bad or good, torture of necessary therapy, it is the nurses tasked with doing most of the actual hands-on work.

Though the Golubchuk case didn’t fully play out in court, the Winnipeg Regional Health Authority is investigating how officials can better handle such disputes between physicians and patients. This medical regulatory body “was the first in Canada to introduce guidelines for physicians to follow when dealing with end-of-life issues,” the Winnipeg Free Press reported. “They say the minimum goal of life-sustaining treatment is for patients to recover to a level at which they can be aware of themselves, their environment and their existence. In the event families and physicians don't agree that life support should be withdrawn, doctors have the final say.” The board’s report is due out in the spring.

Dr. Susan Block, a palliative care specialist in Boston, has called communication as demanding a procedure as surgery. But communication isn’t a uniform skill among doctors or patients. In Winnipeg, at no point was the dialogue between doctors and the Golubchuk family facilitated by a patient advocate, ethicist, or mediator, let alone a palliative care specialist. I’ve found no reference to a chaplain or rabbi’s involvement.

Here’s where I sound like a broken record: This tragic story of a man dying in a way he would never have chosen, though it played out in Canada, underscores why it is so unfortunate that “voluntary advance care planning” was removed from American Medicare payment policy. To the degree possible, the complicated and emotionally charged end of life conversation between doctor and patient needs systemic weight and encouragement.

It was acceptable for all concerned to put Samuel Golubchuk on life support in the first place. Medical judgement and Jewish law were in apparent alignment at that point. The problem came in the idea of disconnecting him from that same equipment, which the family considered no longer for a doctor to decide, but in God’s hands.

If physicians and hospitals aren’t trusted to decide when medical care is futile and a life is ending, and neither are they encouraged systemically to discuss end-of-life priorities with a patient, that’s a hell of a box in which to practice medicine.

Further, if physicians and hospitals can be forced to deliver care against their ethical judgement to honor a patient’s religious faith, could they be made to perform euthanasia or assist in the suicide of any patient who wanted to die and had no belief in the sanctity of human life? Now that is a slippery slope.

What’s the answer? God only knows. In the meantime, some legislation would help.

BAD CARE, BY POPULAR DEMAND

Spring 2006 is when the miracle occurred. It is when medical science saved my daughter’s life with a bone marrow transplant. But there weren’t enough miracles to go around, and in the weeks just before and after the transplant, three children we’d come to know at Boston Children’s Hospital died. One young woman needed a transplant but lacked a donor. She’d spent hours on the ward playing with a younger boy who would attend her funeral, delivering a cribbage board to her casket, days before recurrent cancer killed him. Another young boy also had a cancer stubbornly resistant to treatment. He died after therapeutic options ran out, his family said goodbye, and he was removed from the respirator.

The juxtaposition of my family’s good fortune with tragedy for these other families changed me in ways I’m still sorting out. Certainly my respect for life and acceptance of death became interwoven as they’d never been. And now, with my colleagues on the Community Ethics Committee having just concluded studying the use of palliative sedation for the imminently dying, we are considering what ought to be our next ethics engagement. Two subjects stand out: medical futility and advance directives.

Medical futility is the point at which the doctor believes dying is in process and treatment is of no therapeutic value. This is a brutal truth to admit or convey, and can be a trigger point for disagreement, as the patient or family insist that “something” be done to prolong life. Who is to say nothing can be done when feeding tubes and ventilators can prolong life indefinitely? If you believe in miracles, then “doing something” can mean keeping an otherwise dying loved one alive by artificial means and praying for intervention. But faith alone isn’t a treatment plan, and so the doctor must choose between denying futile treatment or providing bad care by his or her own professional standards. Either way, integrity is compromised.

Advance directives offer a solution to this scenario, in at least some cases. An advance directive is essentially a road map drawn for the physician by the patient and spelling out what is worth fighting for, and what is not. Given the stated desire of many patients not to die in a hospital, advance directives are a means for that desire to be honored, even for a patient who can no longer express the wish.

The problem is, the better medical science gets at extending life, the worse society gets at coping with the reality of death. Just recently, a New Jersey court ducked the medical futility issue and sent it to the state legislature; a futility bill passed the Idaho senate but then stalled; a health board in Winnipeg, Manitoba, is sorting out a dispute over treatment of a man who died during a “temporary injunction” in a doctor-family futility impasse; and the Obama administration withdrew “voluntary advance care planning” from Medicare funding policy. Medical futility, advance directives and health care policy seem to be swirling in a perfect storm that is frighteningly complex for society to effectively confront, but is building off the coast like an El Nino.

The questions are so daunting that only one state legally supports a physician who refuses to provide inappropriate treatment. In Texas, if a hospital ethics committee agrees with the physician’s assessment that the patient is beyond therapeutic treatment, the law supports withholding inappropriate care. One argument used to defeat a similar measure in Idaho was that it would allow physicians to disregard an advance directive -- that is, to go against a patient’s wishes, which this argument holds sacrosanct. Such a slippery-slope fear also foresees the physician empowered to decide which lives are worth living. This view doesn’t hold physicians, or the system in which they work, in very high esteem.

Such distrust -- of doctors, health care institutions, and government -- is getting in the way of an urgently needed national conversation about how we die. Meanwhile ICUs keep more people mechanically alive, families face moral choices previous generations never had to consider, and costs are the elephant in the room.

At its influential extreme, the pro-life movement forcefully opposes the type of end-of-life planning required for an advance directive. A pro-life website recently celebrated the removal of “voluntary advance care planning” from Medicare funding (“Obama Admin Removes Death Panels After Pro-Life Backlash,” Lifenews.com). But advocating planning of end-of-life care is not the same as end-of-life advocacy. The distinction is important. Slippery-slope fears of rationing and devaluation of life put the pro-life movement in the position of tacitly endorsing and encouraging bad medical care.

Neither medical futility nor advance directives came up during my daughter’s illness. We never got to the point of no more options for medical treatment, and maybe I’d feel differently if we had. But therapeutic options ran out and hard choices were made by the other three families, with whom we shared doctors and nurses dedicated to saving all our children’s lives. Those physicians didn’t make judgements on lives worth saving; they acknowledged with sadness the limits of their life-saving skills.

Whichever one we study first, medical futility and advance directives will be on the CEC’s radar for a long, long time. Anything this difficult to talk about -- for doctors and patients, and for the society we live in -- must matter a great deal. In the dialogue, perhaps we’ll discover the renewable nature of trust.

THE POLITICS OF END-OF-LIFE DIALOGUE

When I was a newspaper copy editor, death was death. There was no getting around it, no matter how much a kind-hearted writer wanted to soften the blow. And so when that journalist wrote in an obituary or other life remembrance that the individual “passed away,” my job was to replace the euphemism with clarity and call it what it was: Death.

I thought about this a few years ago when a sibling called to tell me Mom had “passed on.” It didn’t help my sadness to think Mom hadn’t died, but instead had “passed on.” But that was no time to play copy editor. I thought about this again while reading the New York TImes story headlined “U.S. Alters Rule on Paying for End-of-Life Planning” (January 5, 2011). The story told of the Obama administration’s decision to delete references to end-of-life planning from Medicare regulations covering annual physicals under the new health care law. (http://www.nytimes.com/2011/01/05/health/policy/05health.html?_r=1&emc=eta1)

Deleting reference to voluntary advance care planning, according to an administration official quoted in the Times, “should not affect beneficiaries’ ability to have these voluntary conversations with their doctors.” I’d like to think this is true, and I don’t doubt that the phrase “voluntary advance care planning” would become ammunition for those who would gut the new health care law for fear of federal government. Perhaps the deletion will help the health care law survive the new Congress.

As a colleague on the Community Ethics Committee pointed out, the health care law got in trouble for allowing the doctor to charge for his or her time in discussing voluntary advance care planning with the patient. These conversations are crucial to helping a patient understand options and set goals of care. Now, those discussions may continue, but they won’t be "billable" in a pure sense. As such, they are not systemically encouraged, and these doctor-patient dialogues need to be systemically encouraged, for ethical reasons, for economic reasons, and simply to encourage good care.

The Minnesota Star-Tribune said it well: “Advocating end-of-life care planning does not equal end-of-life advocacy.” This is an important distinction, and it is lost in the Medicare policy change, a political change with no regard for the conversation that is surely taking place right now on an intensive care ward in which the patient has no say in his or her own fate. Perhaps the patient would like to die at home, as most would, but it’s too late for that choice to be considered. Perhaps the patient would not want extreme measures to extend life, but the family doesn’t know that, because the conversation never took place. Perhaps well considered “goals of care” would clarify the path ahead, but the unconscious are past the point of goal consideration.

I’m not worried about those doctors already artful and gifted at the end-of-life conversation, or the patients and families who approach death with grudging acceptance and eyes wide open. They don’t need the support of clearly stated policy. I am worried about the doctors for whom this conversation is an artless dance, at best, and end of life is a topic that is somehow taboo. I am worried about their unfortunate patients, and the nurses caught in the middle, burning out fast, and thinking about a career change.

If the end-of-life dialogue survives this Medicare language change, that’s what matters most. And maybe it’s wise of the Obama administration to avoid the controversial language while upholding the integrity of the policy. That, too, is an artful dance.

But the end-of-life conversation between doctor and patient is a sacred exchange. It is perhaps the ultimate intersection of art and science. It is enormously difficult, and doctors and patients are not uniformly able to explain or comprehend. This makes it all the more important that the conversation not be put off until the patient is no longer conscious, which occurs far too often. This is unthinking. It is cruel to family members who must make brutally hard choices and guess what the patient would have wanted. It unnecessarily compromises the doctor’s guidance for care. And it’s a sad reflection on the state of a nation that prides itself on its medical care, but on the subject of death would rather pass.

THE NEW YEAR, MEDICARE & ADVANCE DIRECTIVES

In a Medicare policy taking effect January 1, the federal government will cover “voluntary advance care planning,” and pay doctors for end-of-life conversations with patients. This is smart, far-sighted and compassionate policy, and though it essentially is but one item in a schedule of payment rates for thousands of medical services, I’d like to think it will encourage better and earlier doctor-patient communication.

In this voluntary planning, patients can hear from the doctor about preparing an advance directive, which anticipates a time when the patient cannot make informed decisions and provides the care team with a clear sense of the patient’s wishes. The benefits should be obvious.

And yet news of the new policy has been simmering in the blogosphere and cable news over the holidays, and could heat up after New Year’s. It might be useful to remember, as an editorial in the Minnesota Star Tribune put it well: “Advocating end-of-life care planning does not equal end-of-life advocacy. That critical distinction is deliberately buried by irresponsible health care reform opponents in the long, ludicrous debate over nonexistent death panels.'’ (http://www.startribune.com/opinion/editorials/112575299.html)

Even for the best care-givers, conversations about the dying process are difficult, and yet they are crucially important to a patient in making smart and informed decisions. Often these topics are put off till close to the end, when there’s no longer any avoiding them, and when the patient has diminished comprehension. Care is best when the doctor clearly understands the patient’s wishes, and the patient understands what is possible and what is not.

Dr. Maria J. Silveira of the University of Michigan found in a study that many patients had “treatable, life-threatening conditions” but lacked decision-making capacity in their final days. The new Medicare coverage adds incentive for doctors to learn a patient’s wishes before a crisis occurs. Dr. Silveira told the NY Times she might ask a person with heart disease, “If you have another heart attack and your heart stops beating, would you want us to try to restart it?” A patient dying of emphysema might be asked, “Do you want to go on a breathing machine for the rest of your life?” And a patient with incurable cancer might be asked, “When the time comes, do you want us to use technology to try and delay your death?” (http://www.nytimes.com/2010/12/26/us/politics/26death.html?pagewanted=2&_r=2&hp)

Oregon has engaged end-of-life issues as few states have, and Oregonians “understand that end of life planning is about keeping control of choices about life-sustaining treatment where it belongs -- with the individual, not with the government, physicians or hospitals.” ( http://www.oregonlive.com/opinion/index.ssf/2010/12/end_of_life_care_resuscitated.html)

With the new policy, patients gain knowledge and autonomy. Doctors get a nudge and an incentive to begin this conversation while the patient can still participate in it, and perhaps also improve their own communication skills.