UK Catholic Medical Association Goes After Palliative Care

The "double effect," supported by the American Medical Association, states that a doctor may prescribe pain medication to a dying patient in doses that are lethal because the intention of the doctor is to relieve pain, not end the patient's life. Palliative medicine, the specialty field that focuses on ways to alleviate pain, is often held to account by opponents of assisted suicide because of what fails to be a "bright line" during the process of dying. How much medicine is too much? Who decides? What if the patient has no advanced directive? Would they want to be in pain or to life a few hours or days longer?

A story in Saturday's The Underground, a UK publication on "Pop Culture from a Christian perspective" quotes the president of the UK Catholic Medical Association (and a lot of excerpts from the U.S. based LifeNews) on the unfounded accusation that "mercy killing" is rampant in that country. A clip from the article, below. Note the muddling of end of life issues by confusing palliative care, hospice, assisted suicide and prevalent Catholic teaching on suffering, along with a restatement of the U.S. case of Terri Schiavo:

One reason for the occurrence of euthanasia, Walker told Scottish Catholic Observer, is that “The standards of medical ethics and of interpretation of existing legislation appear to vary greatly around the country and from one organization to the next, even in the same local area.”

Misuse of LCP

Another reason is the misuse of the Liverpool Care Pathway, which was developed in the 1990s at the Marie Curie hospice and royal Liverpool Hospital, so that palliative care for end-of-life patients could improve, the Scottish Catholic Observer said.

The LCP provides criteria that must be followed before ending life-sustaining treatment and applying palliative care, LifeSiteNews said. However, reports have indicated that LCP has been used in the cases of people who were not dying, such as dehydrating someone to death on the grounds of LCP.

Walker said, “If it is used out of context, then it could be used to the detriment of patients e.g. a patient comes into a resuscitation bay, and it is not always clear if a condition is acute and can be treated,” LifeSiteNews reported.

A recent report on crematorium records showed that 23% of all deaths in one city in the U.K. were people put on LCP without any definite diagnosis of their stage of life, LifeSiteNews said.

LifeSiteNews mentions the case of in the U.S. of Terri Schiavo, who was not dying, but who was withheld hydration, as an example of euthanasia. However, if a person is “actively dying and/or is unable to assimilate H & N, [t]hat person is actually dying and the provision of H & N provides little to no benefit and may cause suffering.” In such case, it would not be euthanasia.

Lana Barnes Removed From Guardianship

Last week, Lana Barnes was removed from guardianship of her 85 year old husband, Al Barnes, by a court in Minnesota. The case stemmed from a disagreement over treatment for Al Barnes between his wife and the hospital where he was being kept alive on life-support. Lana Barnes felt that her husband could recover, the hospital disagreed. During the trial, Lana Barnes admitted to having altered her husband's advanced directive.

The case was another example of the challenges faced by families, patients and hospitals when encountering disagreements over the best path of terminal patients. Once again, the courts had to step in to resolve the issue. But my questions are: what if Al Barnes hadn't drawn up an advanced directive? How do we know that Barnes wishes didn't change after he signed his advanced directive? How do patient's protect their end of life choices as they approach the inability to state their desires?

(h/t BioEdge)

Mitch Daniels Talks Futile Care

Indiana Governor Mitch Daniels touched the Medicare third rail yesterday when talking about how to cut the government program that covers health care for older Americans. Writes Laura Meckler at The Wall Street Journal:

He added that he understands the urge by families to push for what may be futile care. “It’s the most human thing in the world,” he said. “Your loved one is in desperate shape.” He said “we can try this thing that has almost no chance of working” but questioned whether it is worth it, especially given that “it’s going to cost an incredible amount of money.”

It's interesting that a Republican and so many others have this conversation in the framework of cost-cutting and not under the rubric of a more humane consideration regarding futile care: the harm, both physical and emotional that is exerted on family and the patient by futile care.

Daniels stopped short of suggesting, as the Obama administration did briefly, that doctors should be reimbursed for conversations with patients about end of life choices.

Anti-Choice at the End of Life

Here's a clip from my article at The Nation:

Particularly for patients over 65, aggressive treatment and their side effects can be more debilitating than what they’re intended to cure. From CPR (reliable statistics don’t exist, but most studies suggest the procedure saves lives less than a quarter of the times it is performed—and often breaks bones) to artificial nutrition and hydration (which employs a stomach tube for feeding even though loss of hunger and the inability to ingest are natural symptoms of the dying process), treatments that don’t actually improve patients’ lives but provide a significant revenue to doctors, hospitals, and medical manufacturer are common practice in our medical system. Yet patients often don’t know that they can refuse treatments or decide where to die. Providing insurance coverage for discussions about end of life care would help restore choice to those facing a path of unwanted treatment and would reduce the cost of healthcare. It’s a win-win prospect, but that’s the rub: Republicans and their “pro-life” allies have characterized any attempts to reform “aggressive care” as cost-cutting attacks on the most vulnerable.

Will Selecting Surrogate Decision-Makers for Dying Patients Reduce Futile Care Disputes?

Thaddeus Pope -- ya'll know I'm a fan -- has a new article in the St. Louis Journal of Health Law and Policy addressing the selection of health care proxies, or surrogates, as a means of preventing futile care disputes. When parties surrounding a dying patient disagree about what medical treatments to pursue, if any, law suits can ensue. Pope examines the use of surrogates to reduce the chance of these conflicts, citing both benefits and detriments, and gives us a summary of state laws.

William Colby, the lawyer for Nancy Cruzan's family, writes in Unplugged that the definition of death has changed so drastically in such a short span of time that laws, hospital best practices, and the public, forced to reckon with these changes, have not been able to keep up. Pope's work is always a reminder that the issues surrounding patients' rights and futile care are not straight-forward or simple and that they are constantly evolving.

You can read the full article here

You can read the abstract at Pope's site, Medical Futility Blog

Discussing the Atlas Study

Thaddeus Pope has posted the entire presentation from yesterday's panel at the New America Foundation at his site. Joanne Lynn, David Goodman and others discuss the Atlas Study which shows that those living in different regions around the country receive varying levels of end of life care. You can watch it here.

How We Die.

The new PBS Frontline series on end of life issues is now online. You can watch the full episode here.

The Path of Aggressive, Futile Care

From Health Leader Media an article on what they call the elephant in the room, futile care, and what those of us watching the health care crisis unfold in the U.S. see as the number one issue, not only because of cost but because of violation of patient autonomy and well-being:

Once again, the folks at the Dartmouth Atlas Project have pointed to an elephant in the room. There the beast sits—the enormous amount of far too aggressive, painful, costly and often futile care, which too many doctors and hospitals provide during a Medicare patient's last 14 or 30 days of life.

The Dartmouth team's report, entitled Quality of End-of-Life Cancer Care for Medicare Beneficiaries: Regional and Hospital-Specific Analyses, shows the wide, and hard to explain, variation across the country in care provided in the last month or two weeks of a patients life. Its data tables look at cancer care practices within regional referral networks and specific hospitals for 235,821 end-stage cancer patients who died between 2003 and 2007.

The Atlas shows that this aggressive care was provided to patients whose type and stage of cancer predicted extremely poor prognosis, even for the short-term, and for whom such care is likely futile. Cancers like pancreatic, lung, and some types of leukemia and lymphoma were included in the analysis.

This is care that many patients would reject if they were told the truth: that there is very low probability their time spent in a hospital—often in an intensive care unit—will increase their number of days, the authors say.

In some cases, aggressive treatment with chemotherapy, endotracheal intubation, feeding tube placement and cardiopulmonary resuscitation, can hasten death, or at least severely weaken the patient and limit their ability to communicate with loved ones in the time when that's of greatest importance.

Is this what some might truly want? Some, perhaps. But for others, decidely not.

Read the entire post here.

Keeping Them Alive Because You Love Them.

Michael Vitez writes for the Philadelphia Inquirer's online site, philly.com, about the legal and emotional challenges of end of life care that often looks like undue pain and stress for the dying. It's a shocking article about futile care and medical proxies. I suggest you read the entire thing at the link above but here's a clip, below.

I ask, in all sincerity, what the difference is between Prince and Terri Schiavo's family who wished to keep Schiavo alive because she was "completely vulnerable" to them? Not only does the conundrum of futile care and proxy decision-making cause us to think about the economics of health care but, more importantly, about how we love.

And how, as Vitez rightly asks, do we as a culture determine what is best for the patient?

Prince Pulido loved his mother. She named him Prince, after all.

And he couldn't let her go.

It didn't matter to him that nurses at Abington Memorial Hospital thought he was harming her by keeping her alive, or felt he was unrealistic - believing that stem cells could regenerate her brain.

This was his mother, she wanted to live, and she had always bounced back.

For more than a year, Maria Pulido was kept alive on a ventilator. She had respiratory failure, heart disease, dementia, and diabetes, and had both legs amputated, one after gangrene. By last winter, medical records show, she was in or near a coma - unresponsive, couldn't follow commands, would react only to pain.

Prince knew different. She smiled at him. He saw the gleam in her eye.

On May 14, the breathing tube in her throat got clogged and fell out during suctioning at a nursing home. She went without oxygen for 10 minutes and suffered brain damage. Even Prince could see her stare was blank. Still, he continued life support.

He believes in God and in miracles. He's a Philadelphia fireman who races into burning buildings. There's always hope.

Ten times between June 2009 and July 2010, Maria Pulido went by ambulance from a nursing home for ventilator-dependent patients to Abington's intensive care unit, where she spent 69 days and accumulated charges of $1.2 million.

What, if anything, should America do when families insist on continuing life support even though doctors and nurses believe it just prolongs dying?

(h/t Carla Axtman)

What Happens When You Opt Out of Dialysis?

If quality of life is the most important objective for a terminal patient -- and for doctors, caregivers, and family members -- during the end stages of the dying process, how are the pros and cons of dialysis weighed? Will the patient be burdened by dialysis or experience greater discomfort without it?

GeriPal does a good job of examining a new study in the Journal of Pain and Symptom Management that looks at quality of life for those who deny dialysis. It's an intriguing and fairly thorough study that compares renal disease suffers with cancer suffers -- but nonetheless, doesn't give us a clear answer. And such studies may never conclusively do so. The more time I spend watching how we manage emotional and physical pain, the more I better understand how relative pain is. As individual as we are in life and taste, so too are we individual in our definitions of pain. But a study of this sort does go a long way to take dialysis off the path of immediate response for terminal patients and to help us think about what matters: the patient's comfort.

Writes Alex Smith:

What are the clinical implications and remaining questions?

• I usually tell patients and family members that dying of renal failure is "peaceful." I say, "you generally become more and more drowsy, and drift off into a sleep from which you don't wake." This article challenges those words. While I think the final hours and days may resemble that trajectory, the last month as a whole is actually a time of relatively high symptom burden. Clinicians should attend to these symptoms as aggressively as they do for patients with advanced cancer.
• The degree to which these symptoms were due to renal failure or co-morbid conditions is not clear. These patients were not young healthy folks who refused hemodialysis, they refused because they were elderly (mean age at death 81) and had a high burden of chronic conditions like heart failure. Comorbid conditions may be as great a source of suffering in the elderly as the terminal condition (a very Geriatric perspective).
• We still have no randomized controlled trial of hemodialysis vs. no hemodialysis for elderly patients with multiple chronic conditions. We don't know if "conservative management" (no dialysis) is actually associated with a shorter time to death as is widely assumed. We don't know if hemodialysis is associated with a greater burden of suffering, or if (maybe) the trade-offs in terms of reduction in swelling and shortness of breath by using dialysis are worth the hassle, risks, and time spent hooked up to the machine.

Read the whole post at GeriPal.

"The End" Special Issue by Scientific American: Organ Donation

Scientific American editor, Mariette DiChristina, writes in her introduction to September's special issue that the concept, "The End," had been picked up and put down in their offices for years because of "the difficulty and possible discomfort about some of the topics we wanted to cover."

I can't speak for SA's regular readers, but DiChristina needn't have worried. The issue is a treasure trove of intriguing questions and answers, ones too important and timely to be ignored: Does acetaminophen (Tylenol) reduce feelings of rejection and paranoia? (I say let's do a test study on the Tea Party.) What are the chances the world will end by asteroid impact? (1 mill in next 100 years) Runaway global warming? (2 in next 200 years) Killer pandemic? (2 in the next 30 years) What are the four stages of body decomposition? (Fresh, Bloat, Active Decay, and Dry); What cultures are disappearing?; What scientific discoveries should rightly come to an end? (Daylight savings time, the space shuttle, landfills, teflon, among others); And how much time is left for glaciers? Gold mining? (20 years) Time? (Yes, how much time does time have?)

But the articles that most speak to my own writing interests -- patients' rights, primarily -- are great too. Thomas Kirkwood addresses why we can't live forever (pp 42). SA's various advisory board members look at anticipated reproductive trends in the next decades ("What Comes Next" pp 92). And Robin Marantz Henig contributes a brief but spot-on look at organ donation ("When Does Life Belong to the Living?" pp 50) and the contested definition of death. She writes:

To address this issue [establishment, with the advent of organ transplantation, of "dead-donor rule" in 1960s to prevent organs from being taken from the living; in essence, the definition of death], a blue-ribbon Harvard Medical School panel met in 1968 and arrived at the concept of "irreversible coma," more commonly known as brain death. By this term, they meant that the cerbral cortex -- the seat of consciousness, language, empathy, fear and everything else that makes us human -- is irreversibly destroyed. Destroyed, too, is the brain stem, which orchestrates such basic physiological functions as breathing, heartbeat and homeostasis. Modern medical machinery may keep the body oxygenated, but the person inside is gone.

The definition of death has been reviewed periodically since then by groups of bioethicists, and although the terminology sometimes changes, the substance remains basically the same. The concept of breain death (often knows by the more modern and clinical term "the neurological standard of death") has since become encoded into law in nearly every state in the U.S. Ethicists and the law agree: a person whose cortex and breain stem are destroyed has ceased to be alive, even if the body is warm and pink. That body is no longer considered a person. Instead it is a heart-bearing cadaver.

All this means quite a bit to the hundreds of thousands who wait for years on organ recipient lists. And it means a lot too to "pro-life" activist groups who would like to remove decision-making from individuals and family members burdened with terrible choices in dire situations.

Think Terri Schiavo (and the Terri Schindler Schiavo Foundation) or Wesley J. Smith (a staunch, vocal advocate for the Schiavo family and removing such decisions from doctors or patients who wish to determine their own end of life care) or the United States Conference of Catholic Bishops (which as recently as November changed the guidelines in all 624 of the U.S. hospitals they oversee to leave the question of removal from artificial nutrition and hydration up to hospital management and not the patient or family, living will or advance directive be damned).

Citing the three cases in Denver between 2004 and 2007 in which the Pittsburgh Protocol (waiting a full two minutes after removal from life support before removing organs from a "brain dead" patient, despite risk of organ deterioration) was violated for the sake of needy infants, Martanz Henig makes a fascinating point in her article that notes the root of the medical profession's tip-toeing around the definition of death. Robert D. Truog of Harvard supported the doctors' (and the hospital ethical board's) decision, saying that the "dead donor" rule was unimportant when considering whether an injured person's recovery was impossible and what the family consented to. But:

...Arthur L. Caplan of the University of Pennsylvania, recoiled at Truog's suggestion, mostly because of how it would be interpreted by an already skittish lay public. "We ought not underestimate public unease," he said. "Making people wonder if you're going to cut corners on their care in order to salvage organs from them is a very dangerous area to be in."

In other words, altering the "dead donor" law to allow, say, waiting less than two minutes, would deter the (already wary) population from signing up as organ donors. The number of people each year who die from lack of viable, transplant-ready organs (currently about 7000) could increase because of a fear of doctor's ethics regarding the definition of death. (See my post here some months ago regarding a New York Times article on organ donation which points out how rather arbitrary that two minute designation is.)

While I think that Caplan's fears are legitimate, I'm more interested in asking why. The medical profession has a long history of discomfort and distrust with minorities and females, particularly African Americans. Often this distrust, as with abortion and end of life care, is fueled by political motivation ("black genocide") or exceptions that don't prove a rule (Terri Schiavo again; there are 30,000 patients like Schiavo in our hospitals any given year). In other ways, history has proven that the medical profession preys on patients: futile care, aggressive elder treatment, lack of research into disease causes (see Barbara Ehrenreich's Cancerland) or lack of discipline in telling patient's the truth (because, you know, they can't handle it).

But this distrust should not be used as an excuse to let thousands of people die, to cruelly prolong the lives of the "heart-beating cadaver." I'm not saying that fear isn't real, I'm saying that it results from a lack of bodily autonomy. As recently as the 70s, women would go in for a simple biopsy of a breast lump and come out with full mastectomies. This kind of patriarchal, "doctor knows best" is a wound that the industry has brought on itself. It exists. It is real. But it should be combatted -- not by playing into it with arbitrary definitions that become arbitrary rules but by addressing it candidly. For the sake of patients, a frank discussion about the way death has changed over the past 40 years must be had.

Removal from Dialysis or Murder?

An interview at Renal and Urology News with Dr. Lewis M. Cohen, author of the new book No Good Deed: A Story of Medicine, Murder, Accusations, and the Debate over How We Die. The book recounts the case of two nurses who were charged for murder for removing a patient from dialysis. Here's a clip:

During a series of interviews, they recounted a number of remarkable stories of inspiring deaths that followed stopping dialysis. Those were not surprising. What was surprising was this particular case, which had resulted in criminal accusations. To put it mildly, I was shocked and horrified. I became determined to understand what had happened, and in the process discovered that there were a number of similar—and sometimes much more catastrophic—cases around the country where nurses or physicians stopped life-support treatments, provided analgesics to relieve suffering, and then found themselves accused and sometimes even convicted of murder.

Reporting that Distorts EOL Care

Ah, it's The Economist's turn; shoddy reporting that does the "he said, she said" deal but reveals little about how we die. Where are the statistics on how many nurses and doctors do issue fatal doses of morphine to end suffering at the end of life? Why make Howard Martin a pariah - without a discussion of why he and other doctors DO give overdoses?? Where's the discussion of futile care and over-treatment, the prolonging of death that takes place in every modern hospital the world over because of pursuit of ineffective treatments? The statistics on how many elders have medical proxies, end of life care plans, or living wills? Or advocacy for these? And the doctors and nurses who would rather overdose in silence than face the warped and hypocritical wrath of a sentimental public? We live in an age where society, the media, and the medical profession pretend that more and more treatment is the best way to approach death, despite the extraordinary pain that such treatments bring to elder and terminal patients.

From the negligent article that is so typical of our preference for sentimental and factless reporting about death:

THE argument over the ethics of assisting the terminally ill to die is sharpening, as two recent cases concentrate minds. On June 25th Keir Starmer, the director of public prosecutions, said that Michael Irwin and Alan Cutkelvin Rees would not be prosecuted for helping Raymond Cutkelvin, who had pancreatic cancer, die at a Swiss clinic in 2007. Prosecuting would not be in the public interest, he held: Mr Rees was motivated by compassion; Mr Irwin, a former doctor, was an elderly man; and neither had profited from the death.

In another, very different, case, the General Medical Council struck Howard Martin off the medical register on June 18th. Mr Martin admitted to hastening the death of a number of patients and said that he had not always sought consent from sufferers or their families before doing so. In 2005 he was acquitted of murdering three patients through overdoses of morphine. The police may reopen that investigation.

At issue is whether it should be legal to help a sufferer who wants to take his own life, or whether this might put pressure on the sick, the disabled and the elderly to call it quits early. In February the Crown Prosecution Service (CPS) issued new guidelines on when someone might expect to be prosecuted for assisting suicide. Debbie Purdy, who has multiple sclerosis, had asked the courts to clarify whether her husband would be prosecuted if the couple travelled to Dignitas, a clinic in Switzerland, to end her life. Mr Starmer stressed that the guidelines did not decriminalise assisting someone to die or “open the door to euthanasia”, and that no case was absolutely prosecution-proof. But all sides welcomed the new stress on a suspect’s motivation.

Futile Care, Examined.

From an AP article by Marilynn Marchione:

Doctors can't predict how soon a patient will die, but they usually know when an illness has become incurable. Even then, many of them practice "exhaustion medicine" — treating until there are no more options left to try, said Dr. Martha Twaddle, chief medical officer of Midwest Palliative & Hospice Care Center in suburban Chicago.

A stunning number of cancer patients get aggressive care in the last days of their lives, she noted. One large study of Medicare records found that nearly 12 percent of cancer patients who died in 1999 received chemo in the last two weeks of life, up from nearly 10 percent in 1993.

Guidelines from an alliance of leading cancer centers say patients whose cancer has spread should stop getting anti-cancer medicine if sequential attempts with three different drugs fail to shrink their tumors. Yet according to IntrinsiQ, a cancer data analysis company, almost 20 percent of patients with colorectal cancer that has spread are on at least their fourth chemotherapy drug. The same goes for roughly 12 percent of patients with metastatic breast cancer, and for 12 percent of those with lung cancer. The analysis is based on more than 60,000 cancer patients.

Often, overtreating fatal illnesses happens because patients don't want to give up.

Here's the clip Thaddeus Pope pulls out at his blog:

Americans increasingly spend more time in hospitals in their final days, trying last-ditch treatments that often buy only weeks of time and racking up bills that have made medical care a leading cause of bankruptcies.

More than 80 percent of people who die in the U.S. have a long, progressive illness such as cancer, heart failure or Alzheimer's.

More than 80 percent of them say they want to avoid hospitalization and intensive care when they are dying, according to the Dartmouth Atlas Project, which tracks health-care trends.

Yet that's not what is happening:

• The average time spent in hospice and palliative care, which stresses comfort and quality of life once an illness is incurable, is falling because people are starting it too late. In 2008, one-third of people who received hospice care had it for a week or less, says the National Hospice and Palliative Care Organization.

• Hospitalizations during the last six months of life are rising: from 1,302 per 1,000 Medicare recipients in 1996 to 1,441 in 2005, Dartmouth reports. Treating chronic illness in the last two years of life gobbles up nearly one-third of all Medicare dollars.

"People are actually now sicker as they die," and some find that treatments become a greater burden than the illness was, said Dr. Ira Byock, director of palliative care at Dartmouth-Hitchcock Medical Center. "There are worse things than having someone you love die," he said.

See full article from DailyFinance:http://srph.it/bi7rzf

Reigning In The Cost of Futile Care.

Stella Fitzgibbons writes at the LA Times that the costs of futile care are going to be difficult to reign in. And I post the entire article below because the LA Times site is so full of medical insurance, AARP, and drug ads that it's hard to see the story for the promo. (Of course, this comes from fantastic Thaddeus Pope over at Medical Futility Blog.)

As a hospital-based doctor, I am one of the people responsible for the country's ever-escalating cost of healthcare. And I can tell you that the new healthcare plan will do nothing to restrain me.

There is enormous pressure on healthcare providers to continue practicing the most expensive medicine in the world. To resist that pressure, we need some help from policymakers.

Consider the case of a man I'll call Mr. A. At the age of 80, he is admitted to intensive care after a huge stroke. He also has pneumonia and kidney failure. He is too sick to tell us his views on aggressive care at the end of life, but his family is happy to fill the void. They insist we use every tool at our disposal to prolong his life, despite brain scans making it clear that he will never again be able to walk, talk or feed himself. The total bill for the last month of life? Many tens of thousands of dollars.

Or contemplate Mrs. B's case. She arrives at the ER with shortness of breath. Tests find iron deficiency anemia. The most likely cause, based on her history, is an ulcer — probably a benign one. We can perform an upper GI X-ray, do a blood test for a bacterial infection that commonly causes ulcers and send her home with pills. Or we can opt for more precise, and far more expensive, tests in which a specialist examines her innards with a fiber-optic scope and takes tissue samples. In rare cases, this procedure catches something an X-ray can't. When presented with the options, the patient chooses the scope. The result? She spends an unnecessary night in the hospital, has $1,000 or more of tests and goes home with the same diagnosis and the same medicines she would have if we'd done the far less expensive X-ray.

And that's not all. Once patients like Mrs. B are diagnosed, they often insist on being prescribed the ulcer medicine they saw last week on a TV ad, which is likely to be a new (and expensive) medication rather than one of the reliable drugs that are older and cheaper.

Both of these patients are composites of people we see at the hospital every day, and they demonstrate why it will be so hard to rein in healthcare spending. Americans have spent the last several decades hearing that all you have to do is be a little assertive to get top-of-the-line treatment. They have had prescription coverage through their health insurance for so long that they have trouble understanding why I won't prescribe a convenient Z-Pack of antibiotics (at a cost of $60 or so) instead of amoxicillin, which they have to remember to take three times a day (at a cost of about $4). Websites and magazines tell them that if the doctors say a condition is untreatable, they should shop around for a specialist, or bully the doctor into trying an experimental treatment and the insurance company into paying for it.

Healthcare rationing is already in place, of course, for uninsured people. If they qualify for care in public systems like the one in Houston's Harris County, where I live, it takes weeks to get through the administrative process and longer still to get an appointment at a clinic. And if a patient needs a specialist, that will mean another wait, which can lead to life-threatening delays in diagnosis and treatment. Medicaid (and soon Medicare) patients also face rationing of a sort, in that they often can't find doctors willing to treat them.

Paradoxically, even as costs are rising, hospitals and doctors are finding their work to be less and less profitable. Even the best insurance plan won't cover the entire cost of Mr. A's hospital stay these days, and Mrs. B's HMO may deny coverage for even a one-night hospital stay. Doctors who accept patients admitted from the ER are often working for free or paid a small subsidy by the hospital, and those who see uninsured or Medicaid patients in their offices are unlikely to recoup enough to cover their overhead for the visits.

Some efforts are being made to control costs. Hospitals keep an eye on "unnecessary days," and medical personnel are becoming experts on "cost-effective care." But the savings of such efforts are insignificant compared with what we spend on futile care at the end of life, or expensive tests and treatments that lead to better outcomes in only a tiny fraction of cases.

Even though President Obama's healthcare plan will expand the number of people with insurance, it won't change the reality that we cannot afford to give every patient and family all they want, or to provide four-star medicine when the three-star version is almost as likely to succeed. Decreasing payments for services will only force hospitals to close and doctors to stop accepting new patients.

Unless someone comes up with a rational program for deciding healthcare priorities, American healthcare is going to become too expensive for any but the rich — and for members of Congress. Don't we deserve better than that?

Defining Death.

The American Academy of Neurology has taken an over-due stab at defining death, from US&News Report/Health:

Determining brain death is a complex process that requires dozens of tests to make sure doctors come to the correct conclusion.

With that goal in mind, the American Academy of Neurology has issued new guidelines -- an update of guidelines first written 15 years ago -- that call on doctors to conduct a lengthy examination, including following a step-by-step checklist of some 25 tests and criteria that must be met before a person can be considered brain dead.

The goal of the guidelines is to remove some of the guess work and variability among doctors in their procedure for declaring brain death, which previous research has found to be a problem, said guidelines co-author Dr. Panayiotis Varelas, director of the Neuro-Intensive Care Service at Henry Ford Hospital in Detroit.

According to the U.S. Uniform Determination of Death Act, brain death occurs when a person permanently stops breathing, the heart stops beating and "all functions of the entire brain, including the brain stem" cease.

While no one disagreed with that description, a 2008 study that included 41 of the nation's top hospitals found widespread and worrisome variability in how doctors and hospitals were determining who met the criteria, said Varelas, co-author of the 2008 review.

For example, low body temperature, or hypothermia, can cause a person to have the appearance of brain death, so bodies have to be warmed before a determination can be made, Varelas said. But hospitals in the 2008 study had 11 different "target temperatures" that varied by several degrees, and there was no consensus about what temperature was optimal to get the best diagnosis, he said.

Those types of details have been worked out in the updated guidelines, which are published in the June 8 issue of Neurology.

"Even the best hospitals in the United States had such a tremendous variability in their policies," said Varelas. "You die either because your heart or lungs stop working, or because you become brain dead. The former two are easy to determine. If there is no pulse, you die. If there is no breathing, you die. But becoming brain dead is much more complex."

The new guidelines were developed based on a review of all of the studies on brain death published between 1995 and 2009.

How Do We Talk About Quality of Life?

Ken Covinsky at GeriPal reminds us, by highlighting a new study, that a patient's diagnosis does not equal their quality of life. He writes:

Perhaps the most important issue is that if you want to know about a patient's quality of life, the best way to do so may be to just ask the patient to describe their quality of life. It seems that adding this single question to most clinical studies would be very informative. There is little reason for not supplementng the excellent health-related quality of life scales that have been developed with this informative global question.

The distinction between health status and quality of life was very nicely illustrated in a studypublished in the May issue of the Journal of the American Geriatrics Society. This study, led by Rachel Solomon and Terri Fried followed 185 elders with serious and progressive chronic illness. The patients had one of a number of conditions associated with chronically declining health---either cancer, CHF, or COPD. Patients were asked about their quality of life every 4 months. The findings are instructive:

• In the interview before death (usually in the last 4 months) 46% of patients rated their quality of life as either good or best possible.
• Between the pentultimate and final interview between dealth, 21% of patients reported improved quality of life and 39% reported no change. So, not only does quality of life not always decline as health worsens, sometimes it actually improves.
• Quality of life is strongly innfluenced by many nonmedical factors. For example, one of the strongest predictors of better quality of life was growing closer to one's church

To those of us who volunteer for hospice, we know that "quality of life" often includes far more areas of the patient's life than just their physical health. Finances, environment, food access, communication with family, friends, and medical staff, status of their estate will and possessions, spiritual comfort; all these issues and more can contribute to pain when they are outside the patient's control or expectations.

Cicely Saunders, the founder of the modern hospice program, called this idea of pain, something broader than just physical suffering, "total pain," as noted in an article on hospice history by David Clark:

There can be little doubt that when Cicely Saunders first used the term “total pain” in the early 1960s, she was in the process of bequeathing to medicine and health care a concept of enduring clinical and conceptual interest. In recent years we have gained a clear picture of the early evolution of the notion of total pain (Clark, 1999). Certainly, it emerged from Cicely Saunders’ unique experience as nurse, social worker, and physician—the remarkable multidisciplinary platform from which she launched the hospice movement. It also reflected her willingness to acknowledge the spiritual suffering of the patient and to see this in relation to physical problems. Crucially, total pain was tied to a sense of narrative and biography, emphasizing the importance of listening to the patient’s story and of understanding the experience of suffering in a multifaceted way. This was an approach that saw pain as a key to unlocking other problems and as something requiring multiple interventions for its resolution. Thus was formulated the idea of total pain as incorporating physical, psychological, social, emotional, and spiritual elements (Saunders, 1964).

The problem with the term "quality of life" is that it's become highly politicized in the past few decades, since medical advancements changed the definition of death with the new ability to sustain heart and lung function almost indefinitely. (William Colby has a great discussion of the term, it's many meanings and its importance in his 2006 book, Unplugged: Reclaiming Our Right to Die in America. See pages 126 - 139.) In the cases of Karen Ann Quinlan, Nancy Cruzan, and Terri Schiavo, the "quality of life" of these individual women was contested by either medical staff or family members. Without the ability to communicate their medical decisions, these women were left to be "managed" by prevailing forces, in all three cases after a protracted legal battle. Because the standard, "I wouldn't want to live that way," is one that various non-terminal patients hear, particularly those with physical disabilities, the discussion of quality of life became muddied with conversations about patient autonomy, futile care, disability rights, and discrimination.

Religious leaders and "pro-life" groups have worked hard, often with the help of disability rights advocates (see the January 2010 special "assisted suicide" issue of Disability and Health Journal), to present the notion that quality of life is either unimportant when society considers treatment for the dying, or that we humans are unable to judge what only God can. In this way, pain management can then be acceptably addressed by some religious practitioners without moving into the politicized and evolving concept of "quality of life." There are endless theological justifications for refuting the will of a patient or their family when facing pain, including the concept of redemptive suffering (as espoused in Ethical and Religious Directive #61of the US Conference of Catholic Bishops, used to govern 624 hospitals in the US, which states, "Patients experiencing suffering that cannot be alleviated should be helped to appreciate the Christian understanding of redemptive suffering.") God doesn't give us more than we can handle, therefor if we are in un-relievable pain, we can handle it. Suffering brings us closer to God by helping us to relate to Christ's suffering on the cross. It is through relation to Christ's pain that we most-often achieve salvation. To many of us, this can be a paradoxical concept; yet it undergirds the "mission" of the Catholic Church and "pro-life" activism against abortion, instruction in STD or AIDs prevention, fertility treatment for lesbian women, and removal from artificial nutrition and hydration at the end of life.

But Colby makes a strong case for continued public debate about "quality of life," one that focuses on the actual state of patients, medical procedures, patient informed consent, and various factors beyond but including physical pain. He writes:

The problem with avoiding the topic of quality of life is this: the main issue in the Schiavo case was Terri Schiavo's quality of life. Though not usually cast that way, that's what the whole debate of the case was about. More specifically, the issue is whether a medical intervention can restore function, relieve suffering, and provide sufficient quality of life so that the patient (or person speaking on her behalf) chooses to accept that medical treatment. Indeed...quality of life is what the serious public debate should be about.

Various attempts have been made to define "quality of life" in a meaningful and functional way, namely by presidents' councils on medical ethics. Yet the controversy -- that is the mediated public debate, often devoid of practical considerations -- on quality of life, particularly in such cases as the 30,000 persistent vegetative state patients who are in the US at any given time or surrounding issues of assisted suicide and organ donation, will most likely continue until society's understanding of medical capabilities, futile care, law, and the dying process catch up. I'm hopeful that the advancing assisted suicide movement, the glut of Baby Boomers soon to enter the end of life phase, advocacy for patient autonomy and rights, and our crumbling and inadequate medical system will all contribute to greater public knowledge and discussion of quality of life.

Unnecessarily Burdensome.

I've been pointing to Thaddeus Pope a lot lately and for good reason; he's keeping us apprised of cases around the world that address futile care, and in a way that is provocative and not monolithic. That's refreshing when so often commentary regarding health care comes as announcements, not invitations to think. Take for instance the last paragraph in this quote from Pope's site of an article in the Yorkshire Post. Pope highlights the interesting bits that work to change the way we look at patient choice as limited only to effective care - that's a huge paradigm change from the rampant demand for treatments until the last days of life, regardless of their efficacy (see Montana Republican state senator Greg Hinkle in my prior post.)

Barbara Evans' daughter was "shocked" to discover that a DNR order had been written on her mother's medical notes. She explained, "I was shocked because this issue had never been discussed with either my mother or the family." (Yorkshire Post, June 1, 2010)

A Leeds Teaching Hospitals NHS Trust spokesman said:

The trust policy states explicitly that in most cases patients should be informed of any clinical decision not to attempt resuscitation. We do discuss cardiopulmonary resuscitation (CPR) decisions with patients and/or their relatives where we feel there is a genuine choice to be made – that is when we think that it could be successful, but even then the patient may not want CPR to be attempted. Our policy emphasises that, where there is a real, and difficult choice to be made, the patient's view is of paramount importance.

The spokesman further explained:

However we may feel that to attempt CPR would be medically futile, and that there is no real decision for the patient or their relatives to make. Even then, we now recommend that most patients should be told, as part of the process of keeping them informed about the seriousness of their condition. For some patients, for example those who know that they are approaching the end of their life, information about interventions that would not be clinically successful would be unnecessarily burdensome and of little or no value. Such patients could be distressed by receiving what could appear to be unnecessary and unhelpful information, in the same way that we would not talk about an operation or other treatment that would not help them.

Denying Death in Montana's Legislature

Here we go: Montana Republican state senator Greg Hinkle has introduced a bill that would make it illegal for a doctor to give a mentally competent, terminally ill patient a lethal prescription. The bill is a reaction to the New Year's Eve decision by the state supreme court that aid in dying is not prevented under the current state constitution. Those of us watching the state since the New Year have been noting the battle brewing there. Compassion and Choices, participants in the Baxter v. Montana case, have been running ads to make more citizens aware of the dying process and the way aid in dying works. They've rightly anticipated moves like this by legislature and "pro-life" groups to temper that ruling. Hinkle's statements in this article are, I think, very telling of the mindset he represents.

Hinkle says a family member was told he only had a short while to live. That was over 30 years ago and he's still alive with great grand kids. He thinks people could take advantage of a sad person for malicious purposes. He says "If you're in a depressed state, which some people can be, then they might say I give up instead of fighting it. Look at how many cases of people with debilitating diseases who are going to fight .

The common argument against aid in dying takes these points as evident, moral and worthy of state enforcement:

1. Doctors misdiagnose and miracles do happen (meaning God can reward us with a reprieve from a terminal illness)

2. Society, termed the "culture of death" by "pro-life" groups, is out to kill. Hinkle and others see themselves as protectors of moral and religious behavior.

3. A patient who "gives up" on life by asking for aid in dying doesn't deserve to have their suffering alleviated. In other words, those who accept that death must come are not victims of a terminal disease but victims of their own lax morals. And yet, those who request aid in dying have most often fought their disease for years - in Baxter's case it was 12 years - with a strong will to live.

4. By legislating that all patients refuse to "give up," Hinkle is arguing for futile care, that each of us deny the likelihood of death and accept the physically, emotionally and financially costly treatments that can't save life but can only prolong death, if not for themselves then for a society that works to deny death.

Addressing Fear of Litigation.

Thaddeus Pope reminds us that even perceived fear - in this case, among care practitioners of prosecution for refusing inappropriate medicine or for overmedicating - is legitimate. The cause of the fear may not be justified (prosecution/accusations may be rare) but the fear itself is. It comes from somewhere - the culture, the stigma of pain, etc. - and we are remiss to not address it as such. Only education, "safe harbors" and communication can combat this and allow care providers with the freedom to, in conjunction with the patient and their family, to make the best decisions.

In her "Regulating Physician Behavior: Taking Doctors' 'Bad Law' Claims Seriously" Childress Lecture, Sandra Johnson makes a compelling case that, even when they are misinformed, the risk perceptions of healthcare providers must be addressed. They can be addressed through safe harbors, through education, and through other mechanisms. But it is not sufficient to simply dismiss provider concerns even if they do lack a solid (or any) basis in legal reality. Perceptions of risk, not actual risk, guides behavior. Therefore, to get optimal treatment behavior, it is not sufficient to reduce or eliminate the risk itself. Providers must also view the risk as de minimus or non-existent. I was reminded of this twice today.

First, this morning during the Council on Health Care Economics and Policy conference at the RWJF in Princeton, Norm Fost argued that the risk of liability or prosecution for unilaterally refusing inappropriate medicine is close to zero. He may be right. Nevertheless, such care is regularly provided. Sometimes, it is because physicians themselves want to provide it. Sometimes. providers understand the legal risk is low, but still want to avoid conflict and cave-in. But still other times, providers really do fear some sanctions.

The second event from today that reminded me of the importance of perceptions is a report in today's British Telegraph that a significant percentage of British nurses fail to provide adequate pain control. Why? Because of a fear or prosecution for accelerating death.