End-of-Life Choice, Palliative Care and Counseling

Patient-Centered Principles

Themes Identified for Improving End-of-Life Care in ER

Medical Xpress
September 5, 2012

Major and minor themes have been identified by emergency nurses who often provide end-of-life care in the emergency department setting, according to a study published in the September issue of the Journal of Emergency Nursing.

Renea L. Beckstrand, Ph.D., R.N., of the Brigham Young University College of Nursing in Provo, Utah, and colleagues surveyed 1,000 emergency nurses for suggestions regarding how to improve EOL care in the emergency department setting. Overall, 230 nurses provided 295 suggestions for improving care. The researchers identified five major themes and four minor themes. The major themes, which were mentioned by 20 or more respondents, included allowing emergency department nurses to have more time to care for dying patients; allowing family to be present during resuscitation; and providing more comfortable patient rooms, privacy, and family grief rooms.

Minor themes, mentioned by 16 or fewer nurses, included increased ancillary service involvement; pain management and minimizing suffering; family education; and honoring patients’ desires and wishes. “Large numbers of patients die in emergency departments in the United States every year. Caring for those who are dying in emergency departments is difficult because these highly technical departments were primarily created to save lives,” the authors write. “Implementing changes based on emergency nurse recommendations may dramatically improve EOL care for dying patients and their family members.”

Physicians’ Emotional, Institutional Barriers Prolong Medical Futility at End of Life

By Sarah Guy
August 29, 2012

The most common reasons that clinicians give to explain medically futile treatment at the end of life are emotional difficulties, such as a fear of talking about death, and institutional barriers, such as hospital departments expecting them to “do everything possible,” report German researchers.

The team suggests that improved communication training and knowledge transfer, organizational improvements, and emotional and ethical support systems could relieve the difficulty physicians have with communicating medical futility to their patients and patients’ families.

Furthermore, the fact that a large part of lifetime healthcare costs are incurred in the last year of life, and that reducing nonbeneficial treatment on intensive care units could reduce these costs, the issue of medical futility “bears considerable economic and ethical relevance to society,” say Ralf Jox, from the University of Munich, and co-workers.

The team conducted interviews with palliative care and intensive care staff involved in 17 ethics consultations at a large tertiary medical institution over a 1-year period.

The majority (62%) of the 29 healthcare professionals in the study reported knowing of situations where life-sustaining treatment (LST) was futile, and demonstrated unease at being asked to define futility to the researchers, evidenced by a 17% increase in pauses and use of filler words in their responses.

When the term was defined, staff explained medical futility as having a lack in goals of care, or that goals are overridden by associated risks, harms, and expenses – for example, an irreversible dependency on LST for the remainder of life, report the researchers in the Journal of Medical Ethics.

One intensive care physician reported that being able to say they “did everything we could” was one reason for providing futile treatment, while fear of doing something wrong (ie, legally) was another.

The authors observed differences in communication methods between physicians and families according to physician specialty. Intensive care physicians reported “a more cautious, indirect and matter-of-fact approach” (ie, explaining the difference between prolonging life and prolonging suffering), while palliative care physicians used a more direct and personal approach (ie, an “empathetic conversation” starting with what the patient already knows).

Jox et al propose an algorithm for end-of-life decision-making to assist physicians in communications about medical futility that rests on what the patient’s preferred goal of treatment is, and how the patient evaluates benefits versus risks and burdens.

“It intertwines the two principle ethical grounds of treatment decisions: patient autonomy and patient wellbeing,” they conclude.

Overtreatment Is Taking a Harmful Toll

By Tara Parker-Pope
The New York Times
August 27, 2012

When it comes to medical care, many patients and doctors believe more is better.

But an epidemic of overtreatment — too many scans, too many blood tests, too many procedures — is costing the nation’s health care system at least $210 billion a year, according to the Institute of Medicine, and taking a human toll in pain, emotional suffering, severe complications and even death.

“What people are not realizing is that sometimes the test poses harm,” said Shannon Brownlee, acting director of the health policy program at the New America Foundation and the author of “Overtreated: Why Too Much Medicine Is Making Us Sicker and Poorer.”

“Sometimes the test leads you down a path, a therapeutic cascade, where you start to tumble downstream to more and more testing, and more and more invasive testing, and possibly even treatment for things that should be left well enough alone.” More

Time Magazine’s Cover Story on End-of-Life Care

“How to Die” reads the cover of the June 11th issue of Time Magazine. Joe Klein writes about his parents’ approaching the end of life, and about the dramatic improvement in their care when they transitioned to a facility without incentives for unnecessary interventions.

The full story will soon (or immediately, for subscribers) be available online, and at newsstands later this week. Watch Joe Klein’s discussion now at Time.com.

The Religious Right’s Assault on Palliative Care

Anti-choice forces are taking aim at end-of-life care. They’re after people at the end of a long decline who exercise their right to stop life-prolonging technology or treatment. Their tactic is to tie the hands of doctors attending those patients, when palliative treatment might ease the patient’s chosen death. They seek to undermine the widespread agreement among doctors: Treatments can be stopped, and should be stopped as humanely as possible, when patients’ wishes are clear.

But the medical establishment’s support for patient choice exists within a particular, and peculiar, bioethical framework. Doctors usually invoke the Catholic doctrine of double effect to explain how they can perform an act, such as administering sedatives and disconnecting a ventilator, knowing the two acts will cause the patient’s death. The doctrine holds that a person is not responsible for what they know will ensue as the product of their actions, so much as what they intend. In essence, “my intention was not to cause death, my intention was to ease suffering.”

A problem arises for palliative care physicians when people question their intention. Since it is impossible to prove a thought, doctors will always be vulnerable to accusations about intentions. This vulnerability is exploited when anti-choice advocates promote legislation that 1) raise the bar on what will pass for lawful practice and thought, 2) magnify penalties for those found guilty of forbidden thoughts and intentions and 3) encourage scrutiny and whistleblowing by onlookers and medical colleagues. And the medical lobby has done little to oppose these bills.

Recent events illustrate the danger.

Georgia HB 1114, passed last month to prohibit assisted suicide. Shaped by Georgia Right to Life and the Georgia Catholic Conference (thanked from the floor of the House) and with no visible objection from the physician community HB 1114 purports to outlaw suicide assistance. Here I would like to affirm my strong support for clear laws and harsh penalties for those who incite and abet suicide.

But a mere 19 of this bill’s 57 lines address actual criminal behavior.  The bill’s drafters wasted few words on perpetrators of violence, guns, nooses and other atrocities by which online predators and other malicious enablers encourage self-destructive impulses of the mentally ill. The heinous crime of inciting a despondent or disturbed person to kill themselves seems almost an afterthought in this bill.

The bulk of the bill — 37 lines — frets over patient decision-making and medical treatment in minute detail. It focuses on doctors more than the voyeurs and predators that endanger society. The new law repeatedly specifies that any withholding, withdrawing, prescribing, administering or dispensing must be solely intended and calculated to relieve symptoms and never to cause death. Some tried to allow treatment that “eases the dying process,” but the lawmakers deemed that language too permissive and generous.

Georgia lawmakers not only paste targets on healthcare professionals, they also armed those taking aim at forbidden intentions with the state’s RICO (Racketeer Influenced and Corrupt Organization) law. The heavy artillery of RICO magnifies the state’s policing authority, extends penalties, adds civil liability and enables prosecution of individuals only tangentially involved in the patient’s care.

A recent study showed onlookers and watchful colleagues already threaten palliative care physicians with accusations of murder and euthanasia. Over half of palliative physicians report they have endured such accusations at least once, some as often as 6 times, over the past 5 years. And in the bills they promote, anti-choice advocates enable these watchdogs.

Patients need more legislative vigilance on their behalf. Dying patients need a voice in our nation’s statehouses. Without one, the creation of thought crimes, threats of exorbitant punishment and hyper-vigilant whistle-blowers could stunt the future of palliative care.