Is specific recommendation rejected? Continue work

Be persistent in promoting discussion

In a recent case, a nephrologist declined to confront a family member demanding continued hemodialysis for a permanently non-responsive patient in multi-organ failure. "We attempted to educate the doctor on ethics practice guidelines from his sub-specialty, indicating that hemodialysis is not beneficial and may appropriately be discontinued in such situations," recalls David M. Adams, PhD, MLS, a clinical ethicist at Pomona (CA) Valley Hospital Medical Center.

This case illustrates both the limitations of the effectiveness of an ethicist’s advice and the results when such advice is ignored, says Adams. "In this case, the patient lingered near death in the intensive care unit for many weeks, creating moral distress for the dialysis nurses and utilizing resources that might better have been devoted to hospice care," he adds.

Adams says that the best approach for an ethicist to take when his or her advice is rejected, is to "not lose heart, to maintain working relationships with providers, patients, and surrogates, and look for opportunities to promote moral reflection, dialogue, and further education."

Seek continued dialogue

• If a family requests that information about a grave diagnosis be withheld from a patient, the ethicist might recommend in favor of offering the patient the truth.
• When a physician refuses to remove a feeding tube, maintaining it is not "medical treatment," the ethicist might disagree, arguing that artificial nutrition and hydration may be, and should be, removed.
• An ethicist might recommend that the treatment team adhere to the instructions in an advance directive, even though one or more members of the team don’t feel comfortable following the patient’s wishes.

Any of these recommendations might be rejected, says Adams. "The ethicist’s response will depend upon the situation," he adds. "Because an ethicist’s recommendations are advisory, he or she cannot demand compliance, but must instead continue to work with the involved parties."

If a family refuses to consider no-code status, Adams says the ethicist should be persistent in seeking to understand the goals of the family and promote further discussion with the treatment team. "If a physician won’t consider discontinuing tube feedings in a patient with end-stage dementia, the ethicist should be prepared to support his or her recommendation with evidence from the literature regarding the ill effects of continuing medically provided food in patients whose gut and other organs are shutting down," he says.

The patient and the family may disagree because they are requesting more aggressive therapy than is being offered or recommended by the medical team, and the ethics team deems the medical decision ethically permissible. At times, patients or families want therapies removed or stopped when hospitals do not.

"Ethics consultations might side with the medical team not to remove therapies," says Tracy Koogler, MD, assistant director of the University of Chicago’s MacLean Center for Clinical Medical Ethics. Examples might be high quadriplegics on ventilators, or parents who do not want traditional medical therapies for children with cancer.

"As long as the ethicist believes the plan of action being planned is not against a state law and does not harm the patient, then I think they need to let the decision stand," says Koogler. The bioethicist might seek further discussion with the medical team or family, she adds, and perhaps call for other support such as the hospital’s legal or risk management department.

"For staff, many of these situations cause moral distress. Through the early engagement of bioethics, some moral distress can be relieved if the bioethicist is able to assist with or facilitate decisions that avoid harm, and do that which is beneficial — such as addressing pain management," says Bob Parke, BA, BSW, MSW, MHSc Bioethics, a bioethicist at Humber River Hospital in Toronto, Ontario, Canada. He offers these situations in which others have disagreed with a bioethicist’s recommendations:

• Surrogates or family members not agreeing to pain medication being administered at the end stages of a terminal disease.

In this case, Parke and a colleague spent time with the surrogate and family to review the need for pain medication and explore why they did not want appropriate levels of pain medication. "We reviewed that the patient was incapable to make his own decision about treatments including pain management," he says.

Since the patient had not expressed any previous wishes, the ethicists reminded the surrogates of the legal principles for making decisions, including the law’s "best interest" standard. "With time, we were able to get agreement to provide appropriate level of pain management," says Parke. "If we were not successful in the short term, we could have challenged the surrogate decision making through a legal process."

Another option, says Parke, would have been to recommend the application of the emergency provision of the law in which consent is not required to save a life or relieve immediate suffering.

• Families wanting "everything" done when there is no benefit.

If the surrogate decision maker or family does not agree with the proposed treatment plan, the bioethicist — with the team’s agreement — can propose that a third party legal tribunal be utilized. The bioethicist explains the legal process to the surrogate decision maker.

"The bioethicist, using a checklist, also helps ensure that all the necessary steps have been taken prior to the hearing," says Parke.

These include making an assessment of capacity, having meetings to review the treatment proposal, and reviewing the laws for decision making, including making sure that the correct surrogate decision maker(s) is (are) identified. "If it is clear that a case is heading to a hearing, hospital administration, including risk management, is actively involved," says Parke. "This requires meetings in which the bioethicist is present as one of the team members."

If the hearing is taking place, the bioethicist may be called as a witness to establish that the consent and substitute decision-making process had adequately taken place.

In a recent case, the bioethicist was present during meetings with the family to remind them of their obligations under the law as surrogate decision makers and to inform them of the legal process. "The outcome was that the board sided with the hospital’s treatment plan of palliative care rather than doing everything,’" says Parke.

• Surrogates insisting on feeding tube placement at the end stages of dementia.

"This is fairly common," says Parke. "In my experience, a lot of families still don’t know that feeding and swallowing problems are part of the dementia trajectory. My goal is to try and help families to be at peace with a decision they need to make."

Parke takes every opportunity to discuss with physicians the need to inform patients or their families about the problem of swallowing. "By doing so, informed decisions can be made. This includes giving time to families to speak with physicians, clergy, dietitians, and/or speech language pathologists," he says. "I also try to attend family meetings at long-term care homes to address these issues before a crisis."

• Attending physicians’ moral discomfort with de-activating an implantable cardioverting defibrillator (ICD).

A patient at the end stages of his life wanted to make sure his ICD was de-activated prior to his death. "He had heard that he could have painful shocks even as he is dying. His wife was a strong advocate for him and seeing his wish achieved," says Parke. The attending physician was reluctant to de-activate the ICD, as he had a moral concern that he could be causing the person’s death.

"This disagreement was resolved relatively easily. I advised the attending physician to transfer care to a palliative care physician who was willing to ensure the ICD was de-activated, and that the patient’s comfort was maximized," says Parke.

SOURCES

• David M. Adams, PhD, MLS, Department of Philosophy, California State Polytechnic University, Pomona. Phone: (909) 869-3574. E-mail: dmadams@csupomona.edu.
• Tracy Koogler, MD, Assistant Director, MacLean Center for Clinical Medical Ethics, University of Chicago. Phone: (773) 702-9659. E-mail: tkoogler@peds.bsd.uchicago.edu.
• Bob Parke, BA, BSW, MSW, MHSc Bioethics, Humber River Hospital, Toronto, Ontario, Canada. Phone: (416) 744-2500 ext. 2533. E-mail: bparke@hrrh.on.ca.