“At some point, US officials must stop letting a Sarah Palin sound bite influence whether terminally ill patients get a say in their own care.” (From the Boston Globe editorial “Help patients and doctors discuss end-of-life care,” April 30, 2011)
The Globe’s editorial: http://bo.st/jlqd7J
Rabbi Herman Blumberg of the CEC on the subject: http://bit.ly/l2ntjx
Rep. Barney Frank quoted on MSNBC’s “Morning Joe” on Wednesday:
"I think it's time for us to say that if people at the end of their lives want to simply say, “OK, this is it; this is not a meaningful existence’ -- I'm not talking about assisted suicide, I'm talking about the Schiavo case sort of situation where you don't force care on people who don't want it, and whose guardians don't want them to have it. You know, we spend an awful lot of Medicaid on the end of life. And this is not death panels; this is not the government telling you don't get anymore. This is the government not telling you you have to get this medical care whether you want it or not."
For more of the Frank interview, see The Hill: http://bit.ly/gUtfoT
Don't miss “Patients Are Not Consumers,” by economist Paul Krugman in Friday’s New York Times (http://nyti.ms/i2YwYf):
“There’s something terribly wrong with the whole notion of patients as “consumers” and health care as simply a financial transaction," Krugman writes. "Medical care, after all, is an area in which crucial decisions — life and death decisions — must be made. Yet making such decisions intelligently requires a vast amount of specialized knowledge.
“Furthermore, those decisions often must be made under conditions in which the patient is incapacitated, under severe stress, or needs action immediately, with no time for discussion, let alone comparison shopping.
“That’s why we have medical ethics. That’s why doctors have traditionally both been viewed as something special and been expected to behave according to higher standards than the average professional. There’s a reason we have TV series about heroic doctors, while we don’t have TV series about heroic middle managers.
“The idea that all this can be reduced to money — that doctors are just “providers” selling services to health care “consumers” — is, well, sickening. And the prevalence of this kind of language is a sign that something has gone very wrong not just with this discussion, but with our society’s values.”
The paper “Resolving Medical Futility Disputes” appears in the current edition of the DNA Reporter, Official Publication of the Delaware Nurses Association. The piece is significantly longer than most blog posts here, but I’ve included it in full because it so clearly and evenhandedly explains medical futility, strategies for resolution, and why efforts at resolution so often fall short. The full newsletter is available at: http://bit.ly/hH8LwX
The authors are Donna Casey, Nurse Manager of the Wilmington Hospital ICU and Co-Chair of the Christiana Care Health System Ethics Committee; and law professor Thaddeus Pope, an authority on futility and author of the blog www.medicalfutility.blogspot.com.
As the authors conclude: “Providers need to be able to stand up for their patients. The tough work is designing a dispute resolution mechanism that can act with the real-time speed these cases demand, yet include sufficient safeguards to ensure due process protections like neutral and unbiased adjudication.”
Resolving Medical Futility Disputes
Donna Casey
Thaddeus Pope
Conflicts over end-of-life treatment are common. One category of such conflict is the medical futility dispute. Typically, in a medical futility dispute the surrogate decision maker wants to continue aggressive treatment for a patient but healthcare providers determine that such treatment is inappropriate. In this article we discuss: (1) the types of medical futility, (2) how medical futility disputes can be prevented, and (3) how such disputes can be resolved.
Two Types of Medical Futility Disputes
There are two types of futility: physiologic futility and futility as understood as a lack of benefit. Physiologic futility refers to something that cannot achieve the intended goal. For example, in the treatment of a common cold, antibiotics would be physiologically futile. The common cold is caused by a virus, and antibiotics are ineffective against virus. Therefore, antibiotics are futile in the treatment of the common cold. But while physiologic futility offers scientific certainty, it applies to few cases of treatment conflict.
The probability of a treatment’s effectiveness is often higher than zero. Therefore, the more relevant type of futility is futility understood as a lack of benefit. There is some chance that the treatment might work to some degree. But, for critically ill patients, the likelihood is often very low. Is the treatment worthwhile? Is it indicated? Answering such questions requires a value laden, benefits vs. burdens judgment.
One more precise definition of futility identifies medical treatment that:
has no realistic chance of providing a therapeutic benefit that the patient has the ability to perceive or appreciate, such as merely preserving the physiologic functions of a permanently unconscious patient; or
has no realistic chance of returning the patient to a level of health that permits survival without acute level of care or hospital setting; or
has no realistic chance of meeting the patient’s own goals as evidenced by an advance directive or other clear and convincing evidence.
A Medical Futility Case Study
Clinical examples of medical futility that fit this definition can be found in Intensive Care Units (ICU) across the country. Here is a case in point. AH, 96 years old, is admitted to the emergency department from her nursing home with complaints of shortness of breath and weakness. She has a history of dementia, breast cancer and has a stage III sacral decubitus ulcer. AH is admitted to the medical floor where her health continues to deteriorate. She is found to be in renal and cardiac failure. She has bilateral pleural effusions and becomes acutely dyspneic and hypoxic requiring intubation.
AH is transferred to the intensive care unit where her decision maker refuses to allow a biopsy of the pleural fluid. Providers suspect that the effusion is malignant. AH had refused to have her breast cancer treated 20 years ago when it was first diagnosed, so the decision maker surmised that she would not want to have it treated now. AH had an advance directive that stated: “I want my life to be prolonged as long as possible within the limits of generally accepted health care standards.” Despite the apparent contradiction between refusing to treat the malignancy and wishing all medical interventions to preserve life, other treatments were aggressively pursued.
AH remained a full code after progressing to complete renal failure requiring dialysis. She remained a full code even after progressing to long-term respiratory failure requiring mechanical ventilation including tracheostomy. AH was unresponsive to stimuli except deep pain and having severe generalized weeping edema with ubiquitous skin breakdown. Her cancerous breast had become a macerated open wound. She required artificial nutrition through a PEG tube, however she was unable to absorb the nutrition due to her poor health and suffered malabsorption diarrhea worsening her skin breakdown.
In short, there was no medical intervention that was going to cure AH. Medicine was not going to be able to return her to her previous state of health. Medicine was not even able to prevent her imminent death. AH’s decision maker, however, insisted on continued aggressive care, ventilation, dialysis, antibiotics, tube feeds, dressing changes and attempted cardiac resuscitation.
Based on our working definition of futility, one might reasonably conclude that continuing aggressive treatment for AH is futile. No medication or treatment has any realistic chance of providing a therapeutic benefit that AH has the ability to perceive or appreciate, based on her vegetative neurologic condition. Medicine was indeed merely preserving the physiologic functions of an unconscious patient. Additionally, there was no realistic chance of returning AH to a level of health that would permit survival without an acute level of care (in her case, critical care).
One may wonder, however, if continued aggressive care would meet the patient’s own goals as evidenced by her advance directive. Even if it truly were AH’s intent to continue futile care, is it appropriate to utilize extraordinarily expensive resources when no benefit can be realized? What can the bedside nurse, dealing with an unreasonable family member do to advocate for her patient, whom she believes is suffering with every nursing intervention; turning, suctioning, dressing changes etc?
Resolving Futility Disputes through Consensus Building
Once on this road, it is indeed a very difficult journey. Like elsewhere in healthcare, prevention is the best alternative. We suggest utilizing the following strategies to prevent and/or informally resolve conflict with families and decision makers.
1. Develop Goals of Care. Collaborate with patients and families to develop goals of care upon admission. Once established, patient and family should be kept abreast as to the progress towards these goals. When it is determined that patient will not be able to return to health or previous level of functioning, new goals of care should be developed in collaboration with the patient and family. Have one consistent professional be the primary communicator with the family. Teaching institutions with many residents and consultants contribute to conflicting messages and mistrust. When goals of care are agreed upon and it is clinically appropriate to do so, medically non-beneficial treatment may be limited or withdrawn.
2. Bring the Team Together to Communicate a Cohesive Message. If goals of care cannot be agreed upon, conduct an interdisciplinary meeting. Include: (1) key members of the health care team (medicine, nursing, respiratory therapy, other therapies as involved, nutrition, social work, etc.) (2) consulting physicians, (3) the patient’s primary care community physician, (4) the patient and/or decision maker, and (5) other family members and support persons as requested by the family. The purpose of the meeting is to facilitate open and productive communication so that all involved clearly understand the same information. The conference should be patient-centered and should cover the following:
A discussion of patient and family values and goals, medical status and prognosis, treatment options, the goals of medical care and the definition and implications of CPR and a DNR order.
A consultation to the Palliative Care Team may be helpful in managing these situations and should be considered.
A second medical opinion may also be helpful. Sometimes, conflict is related to personality or misinformation. Transfer to another physician or health care facility may be appropriate.
If the second physician concurs that the requested treatment is medically non-beneficial, that opinion should be communicated to the decision maker.
3. Consult the Ethics Committee. If the patient and/or decision maker continues to request non-beneficial treatment and conflict persists, then consult the ethics committee. In an advisory capacity, the Ethics Committee should make every reasonable effort to hear all sides of the conflict, identify ethically acceptable options, and facilitate resolution of the conflict. When possible, it is preferable that the attending physician who participates in the ethics consultation should remain the attending of record until the conflict is resolved.
Resolving Futility Disputes through Unilateral Action
Fortunately, the vast majority of medical futility disputes are resolved through these measures. Providers and families almost always reach consensus. Still, in a small but significant subset of cases, conflict remains intractable. When these preventive efforts fail, an organization must assess whether it is willing to endure the possibility of legal action.
The 1996 Delaware Health Care Decisions Act (HCDA) provides that life-sustaining medical treatment may be withheld or withdrawn from incapacitated patients only with the consent of an authorized decision maker, except in three circumstances, when treatment is: (1) “medically ineffective,” (3) “contrary to generally accepted health-care standards,” and/or (2) contrary to the provider’s “conscience.” But the statute defines these terms in such a narrow way that these exceptions do not apply to most futility disputes. Furthermore, even when these exceptions do apply, the statute requires providers to continue complying with treatment decisions unless or until the patient is transferred to another provider or facility. Since such transfers are almost never found, the statute effectively requires providers to comply with surrogate requests for aggressive curative treatment that they consider non-beneficial, burdensome, and even cruel.
Many providers feel that the HCDA does not sufficiently empower them to resist inappropriate treatment demands. Indeed, providers often feel as though they are torturing the patient. Still, they usually comply with surrogate decisions for such treatment due to fear of litigation. In short, the “decline to comply” provisions in HCDA do not provide an adequate mechanism for resolving intractable medical futility disputes.
Still, a separate HCDA provision is of some use. When a surrogate makes a treatment decision that clearly contradicts what the patient would have wanted, the provider need not comply with that decision. The HCDA provides that a surrogate must make treatment decisions “in accordance with the patient's individual instructions, if any, and other wishes to the extent known by the surrogate.” If the surrogate is unable to determine what the patient would have done or intended under the circumstances, then the surrogate's decision must “be made in the best interest of the patient.” In other words, surrogates must make decisions that reflect the patient’s values, preferences, or best interests. Otherwise, they act outside the scope of their authority. Surrogates who are not faithful agents can and should be replaced.
While effective and functional in some cases, surrogate replacement is hardly a complete solution to medical futility disputes. Most patients have not completed any advance care planning. Of the roughly 35% of Delawareans who have completed advance directives, those directives are usually unavailable when needed. And even when available, those directives usually fail to speak clearly to the patient’s current clinical circumstances. In short, there is often no evidence of patient preferences. Consequently, it is impossible to demonstrate any contradiction between those preferences and surrogate decisions. While we know, statistically, that few would want to live in an extremely compromised condition, particularly if cognitively unaware, providers often do not know what any particular patient is willing to live with. In such cases, there are rarely grounds to replace a surrogate requesting treatment that providers determine is inappropriate.
Providers need to be able to “stand up” for their patients. The tough work is designing a dispute resolution mechanism that can act with the real-time speed these cases demand, yet include sufficient safeguards to ensure due process protections like neutral and unbiased adjudication.
References
Delaware Health-Care Decisions Act, Delaware Code, title 25, sections 2501-2518 (1996).
Luce, J.M., “A History of Resolving Conflicts over End-of-Life Care in Intensive Care Units in the United States,” Critical Care Medicine 38, no. 8 (2010): 1623-29.
T.M. Pope, “Medical Futility Statutes: No Safe Harbor to Unilaterally Refuse Life-Sustaining Medical Treatment,” Tennessee Law Review 71, no. 1 (2007): 1-81.
T.M. Pope, “Legal Briefing: Medical Futility and Assisted Suicide,” Journal of Clinical Ethics 20, no. 3 (2009): 274-286.
T.M. Pope & E.A. Waldman, “Mediation at the End of Life: Getting Beyond the Limits of the Talking Cure,” Ohio State Journal on Dispute Resolution 23, no. 1 (2007): 143-195.
D.J.C. Wilson & J. Savulescu, “Knowing When to Stop: Futility in the ICU,” Current Opinions in Anaesthesiology 24 (2011), DOI: 10.1097/ACO.0b013e328343c5af.
"Insurers sometimes claim that the donation is equivalent to a preexisting medical condition and either reject an application outright or offer coverage with a very steep premium... People who have health insurance through big companies generally aren’t affected, but those who try to find coverage on the individual market or who have coverage through a small business may run into this problem."
"Of course the question is 'Why is that?'" she said. There may be other "non-spoken" factors, she said.The Courant also stated:
"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 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:
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.”
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.
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?
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?
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