Quarterly Ethics Grand Rounds

When a Family Says, “Do Everything”And We Believe

That The Requested TreatmentIs Futile

Idaho Nurses AssociationNovember 6, 2015

Led by R. Alex ChamberlainSt. Luke’s Treasure Valley Coordinator of Clinical Ethics

History

• The Latin word futilis translates “vain or worthless”• Writings from the Hippocratic corpus

“Refuse to treat those who are overmastered by their disease, realizing that in such cases medicine is powerless.”

“Whenever the illness is too strong for the available remedies, the physician surely must not expect that it can be overcome by medicine … To attempt futile treatment is to display an ignorance that is allied to madness”

“Whenever there a man suffers an illness that is too strong for the means at the disposal of medicine he surely must not expect that it can be overcome by medicine.”

“A life with preoccupation with illness and neglect of work is not worth living.”

Defining Futility

Greek myth of the daughters of Danaus who, following the murder of their husbands, were condemned to use jugs that leaked. In modern times, one author reviewed the sentence and reduced it to laying down asphalt and immediately tearing it up due to extenuating circumstances.“Leaky, hence untrustworthy,

vain, failing of the desired end through intrinsic defect.”

Plato and Quality of Life

Asclepius did not attempt to prescribe regimens for those whose bodies were riddled with

disease, so that by drawing off a little here and pouring in a little there, he could make their life a prolonged misery…he did not think he should treat someone who could not live a normal life, since such a person would profit neither himself

nor his city.

Ironically, the patient rights movement began with cases that alleged physician overtreatment: Nancy Cruzan and Karen Ann Quinlan.

But with the case of Helen Wanglie courts ruled that patients and their surrogates could not only refuse treatment but demand treatment that offered no reasonable prospect of medical benefit.

Patient Rights

• A patient has strong negative rights, and can expect to be respected when they say “You shall not touch me in this way.” They have an unlimited right to be left alone.

• A patient has limited positive rights, as in demanding, “You shall touch me in this way.” A patient does not have an unfettered right to compel treatment.

Recent Developments

• First generation: define futility (1950’s to 70’s)

• Second generation: develop laws and processes that resolve conflicts (1980’s to 2000)

• Third generation: Focus on relationships and trust building even when we are “stuck” (2000 to present)

The first generation: Identify terms

• Attempts to define futility:Probability: in the last 100 cases a medical treatment has

been useless (a statistical benchmark)Physiological: a given treatment doesn’t achieve the

outcome for which it was designed, or it only achieves a temporary benefit

Length of life: regardless of treatments offered the patient will die within a certain period of time

Quality of life: a person will remain unconscious, or remain dependent on intensive medical care

Physiological Futility

Futility as a Slippery Concept

• Does it mean “Will not work”? From the medical side, will a treatment accomplish the physiological goal for which it is designed?

• Or, does it mean “Not worth doing”? Will it achieve a level of success that meets the goals and fulfills the values of stakeholders?

• And, even if goals are decided upon, do all decision makers agree on how likely it is that the goals will be achieved, and whether a particular degree of possibility is acceptable?

Illustrative Case• An 84 year old woman comes in with a intracranial bleed, as a

previously unknown aneurysm begins to leak. She suffers from atrial fibrillation, hypertension, and COPD that requires continuous home oxygen.

• The neurosurgeon checks a CT scan and tells her son, the surrogate decision maker, that with her co-morbidities and attendant fragile baseline health, surgery is not indicated. He estimates that there is only a 5 % chance that with surgery she will be restored to her previous level of health. He states that she has a more than 50% chance of dying in surgery or recovery, leaving an almost equal chance of surviving with severe disability.

• If instead they treat her medically, she may stabilize on her own…with a level of disability or recovery that is difficult to predict. It is likely that she will die. The odds of the various outcomes are similar to those with surgery.

Conflicts ensue due to areas of expertise and the respective parties’ right to speak authoritatively

• Clinicians will tend to draw from their training to speak to the probability of outcomes and the physiological responses that can be expected.

• Patients and families will often speak to the length of life that they hope for, and the quality of life that they would find acceptable.

Quality of life is normally calculated by the patient or surrogates, however…

Johns Hopkins’ policy on futility states, Any treatment may be regarded as futile if it is highly unlikely merely to preserve permanent unconsciousness or persistent vegetative state or require permanent hospitalization in an intensive care unit.

Possibility and Probability

• A patient or family may focus upon what is possible, where even a one in a hundred chance of even a minimal recovery would be “worth” pursuing treatment.

• Providers tend to base their practice upon what is probable. If you hear hoofbeats…

Second Generation: Legislation and Policies

• Providers began seeking a way to ethically, legally, and procedurally say “No” to some requests because they felt those requests did not fulfill the ethical principle of beneficence.

• If unable to arrive at a universally accepted definition of futility, it was felt that we could move forward if we had a societally agreed upon process for resolution.

Texas Advance Directives Act

• This law parallels St. Luke’s and St. Al’s policies on Non-Beneficial Treatment. When physicians and families disagree about whether to continue treatment the case is referred to the Ethics Committee and if no resolution is forthcoming a concerted effort is extended toward placing the patient with an different provider. If a diligent search provides no such alternative, after a given waiting period the providers can withdraw treatment.

Idaho statute not as comprehensive

In some cases, the provider may deem continued treatment to be unethical or unconscionable if not "futile" as defined in the statute, in which cases the provider's alternative is to withdraw as the treating provider after making a good faith effort to transfer care to another provider pursuant to I.C. §§ 39-4513(2) or 18-611. That may be a viable alternative for a physician or other individual health care provider, but it is more difficult for a hospital or other health care facility. The practical effect is that it is even more important for providers and facility ethics committees to come to an agreement with patients or surrogate decision makers concerning the appropriate course of treatment or withdrawal thereof.

-Lee Stanger, Attorney

IDAHO STATUTE TITLE 39HEALTH AND SAFETY

CHAPTER 45THE MEDICAL CONSENT AND NATURAL DEATH ACT

The statute only permits the withdrawal or denial of requested treatment if the treatment is futile. The statute now defines "futile care" as a course of treatment:• For a patient with a terminal condition, for whom, in

reasonable medical judgment, death is imminent within hours or at most a few days whether or not the medical treatment is provided and that in reasonable medical judgment will not improve the patient's condition; or

• The denial of which in reasonable medical judgment will not result in or hasten the patient's death.

Factors leading to surrogate requests for medically inappropriate treatment

• “Doing everything” is the most caring response• Guilt, denial, or unrealistic expectations• Inability to trust professionals to act in patient’s best

interests• Religious or philosophical convictions that human life

is an absolute value worth preserving• Economic considerations• A sense of justice/entitlement

What looks like futility to some observersCarries great symbolic significancefor others for those amid the battle

Futility in CPR

Not starting CPR may be a medical decision apart from patient/surrogate input if:• Death is clearly irreversible as in decapitation, rigor mortis and

mottling.• Vital functions have deteriorated despite maximal therapy in cases

of sepsis, multi organ failure, newborns under 23 weeks gestation.…otherwise, patient and family input is reasonable even when

returning to sinus rhythm appears unlikely.

However, stopping CPR once begun, is a medical decision regarding the effectiveness of a particular intervention and informing family of failure is more suitable than asking if we can stop.

Third generation: Relationship Focused

• This “problem” will not go away since emerging technologies and increased health expectations increase in the public the hope that even the most dire situation can be turned around.

• Most disputes on “futility” cases are often about communication breakdowns and erosion of trust between the parties than they are about values attached to medical opinions.

• Focus upon the interests and goals of the parties rather than the positions.

• Generate a variety of options before settling on an agreement. Try agree on a “plan” rather than a “decision”

Reframing the Conversation

• Care conferences: there is a difference between resisting a plan and refusing one.

• Avoid the term “futility” and instead use language such as goals of treatment, patient values, and proportionality of burdens and benefits.

• Strive for consistency: consistent message, continuity among providers, consistent audience.

Additional conversation suggestions

• Avoid using the phrase “There is nothing more we can do.”

• Discuss the goals of treatment, not the goals of “care.” (Caring is never futile)

• Use the term “futile” only within full sentences, such as “Futile in respect to which goals, and whose goals are these?”

• Help people move toward a “good choice” rather than the “right decision.”

When the conflict is protracted

• Ask ourselves if the patient is being harmed. If so, consider asking the courts to appoint a new surrogate. We may tolerate a patient not being benefitted, but we should not acquiesce to treatment that continues significant harm.

• An article in Chest (Burns and Truog 2007; 132(6) argues that one of the biggest challenges to these extended battles is the casualty count among staff.

Futility and Rationing

• Many believe that a treatment that is not futile still should not be provided if the benefits are not proportional to the costs. For example, treating a person with Stage IV cancer with liver and brain metastases with mechanical ventilation may not be physiologically futile but would be considered by many to be a poor use of resources.

• However, we should not conflate good stewardship of society’s resources with the ethical problem of scarce resources. Providing the Stage IV cancer patient with a ventilator is ethically problematic if it denies this treatment to a patient who is more likely to benefit from it.

Uncertainty is OK

• When discussing prognosis and the likelihood of the effectiveness of a certain intervention, we are often unable to make an accurate prediction.

• Therefore, we should not “oversell” our opinion, for example, when discussing whether a patient will make a meaningful neurological recovery following CPR.

Possible “take aways”

1. Sometimes we tolerate discomfort in order to preserve essential freedoms: Protect offensive speech Avoid torturing prisoners even if there is a

possibility of saving lives Continue to treat a patient who is overwhelmed

by disease to respect family wishes

2. A culture clash is often inevitableand does not have to be “fixed”

3. If a solution to a conflict continues to be elusive, we should not unilaterally override surrogates without assuring them of access to an impartial mechanism for resolving differences. At St. Al’s and St. Luke’s all staff, physicians, patients, and families have access to the Ethics Committee and it consultants for this process.

4. The first priority of the healthcare provider is the survival of the provider. If we become depleted we will lose our ability to fulfill our calling, support our peers, and serve our patients. It is OK to be distraught when working with a patient or family when we feel like we are doing something to them rather than for them.