Patients’ wishes for end-of-life care ignored 60% of the time: Here are some reasons why
Bioethicists can help with policies, rounding, and education
A critically ill patient’s known wishes not to be resuscitated or placed on life support following heart failure or stoppage of breathing were ignored 60% of the time, according to a study presented at the Society of Critical Care Medicine’s 2014 Annual Meeting.1 Researchers found that patients’ clearly stated wishes not to be resuscitated or placed on life support were not followed in 21 of 35 cases, often because of efforts by patients’ families to countermand their known wishes and inability to locate documentation of patients’ wishes in a timely manner.
"Patients may forget to provide the documents to key providers, emergency admissions may preclude receiving them, and sometimes families withhold them," says Tedford J. Taylor, MDiv, BCCC, FHPC, director of pastoral care and training at Robert Wood Johnson University Hospital Hamilton (NJ).
Without a centralized electronic storage site accessible to clinicians, advance directive documents may never make it into the hands of the health care team. Here are other situations resulting in failure to follow patients’ wishes:
• Patients’ wishes were never clearly conveyed.
"Patients did not have a frank and detailed discussion with their physician, or did not fill out an advance directive, or did a living will which doesn’t really apply to the clinical situation in which the patient is now finding themselves," says G. Kevin Donovan, MD, MA, director of the Pellegrino Center for Clinical Bioethics at Georgetown University Medical Center in Washington, DC.
If the patient only left oral instructions regarding preferences, these directions are sometimes too vague for providers to act on. "In such cases, the curative care approach is usually the default. Aggressive, full steam ahead,’ life-sustaining treatment is the course of care, even if this is not what the patient desired," says Taylor.
• A patient’s wishes are ignored by the proxy, despite being well-communicated and documented.
Named health care proxies may disregard their commitment to substituted judgment, as outlined in an instructional directive or living will, and instead, rely on their own ideas of what is in the patient’s best interest.
• A practitioner, such as a consulting physician, is out of the communication loop.
By giving a clinically narrow assessment of a patient’s condition and prognosis, the provider can spur proxies or family decision-makers to continue treatments that do not match a patient’s stated preference.
"It may be hard for loved ones to let go of the hope of recovery," says Taylor. "Clinging to any positive news from a clinician will sometimes cause them to disregard the patient’s wishes as they seek one more chance."
• The patient’s proxy was not appointed by the patient.
Many jurisdictions have default proxy lists, with a hierarchy of surrogate decision makers named if the patient never identified a surrogate.
"This makes it convenient for the medical team looking for someone to talk to about the patient," says Donovan. "But a legally appropriate proxy isn’t necessarily a morally valid proxy who is willing to express the patient’s wishes rather than their own preferences."
• The physician knows what the patient wants and would otherwise be willing to follow his or her wishes, but is surrounded by family members who do not agree with the plan, and are threatening to sue the physician.
If a physician would like to follow the patient’s wishes but is being blocked by a family member, employing the help of an ethics consultant can often make a difference, says Donovan. "Physicians know that deceased patients can’t sue, but living family members can," he adds.
Bioethicists have obligation
Clinical bioethicists have these obligations to help ensure patients’ wishes are met, says Taylor:
• To ensure that well-crafted, clearly written policies are in place, spelling out how providers will receive, document, communicate, and follow patients’ advance directives.
• To be involved in patient rounds, especially on critical care units.
"Ensure that the patients’ goals of care are articulated, and followed by all of the clinical team and family decision makers or proxies," says Taylor.
• To engage in the initial training and continuing education of practitioners.
"Use of case studies and other educational formats can increase awareness of the tools available to practitioners, to help ensure patients’ goals at the end of life are met," says Taylor.
Georgetown’s Pellegrino Center is responsible for ethics education of physicians and medical students, as well as ethics consultation. "Playing that dual role helps reinforce the desirable behaviors of physicians in regard to following patients’ wishes, even when they are being opposed by others," says Donovan.
Most jurisdictions provide protection for physicians following patients’ preferences, even if others would have them do otherwise. "Physicians need to know and believe that they are more likely to expose themselves to risk by not following the patients’ wishes, than they are by following them," says Donovan.
Reluctance to obtain advance directives
Donovan is not seeing increased numbers of advance directives and proxy appointments. "There are some institutions which have done an outstanding job of encouraging patients to fill out advance directives. But across the board, we are not seeing these numbers shift a great deal," he says. "It may be that we have peaked in our ability to encourage and support people in letting their wishes be known in that way."
Some patients are reluctant to have advance directives because they fear providers won’t "go the extra mile for them," even when treatments might be beneficial. "This is the exact opposite of a typical scenario at the beginning of the bioethics era," says Donovan. "People were afraid that doctors would put them through all kinds of medical interventions long beyond the time they would be likely to be beneficial."
At that point in time, people wanted advance directives to prevent overtreatment. "Now we are seeing the opposite situation, where treatments are more likely to be demanded by families," says Donovan.
The legality of physician-assisted suicide in Washington, Oregon, and Vermont plays a role in some patients’ reluctance to have advance care directives, says Donovan.
"One of the arguments in favor of [physician-assisted suicide], that patients themselves have heard, is that end-of-life care is too expensive," he says. "Some people now fear that the medical establishment does not want to see them treated."
Some patients are aware that both physician-assisted suicide and euthanasia are legal in some European countries. "We are seeing instances of patients being euthanized even against their will, once they are unable to speak for themselves," says Donovan. "Patients are frightened by this prospect and, therefore, are frightened of appropriate discussions on non-beneficial treatments."
- Jackson K. Do we respect patients’ wishes at end of life? Presented at the Society of Critical Care Medicine, 43d Critical Care Conference. January 9-13, 2014, San Francisco, CA.
- G. Kevin Donovan, MD, MA, Director, Pellegrino Center for Clinical Bioethics, Georgetown University Medical Center, Washington, DC. Phone: (202) 687-1122. E-mail: email@example.com.
- Tedford J. Taylor, MDiv, BCCC, FHPC, Director of Pastoral Care & Training, Robert Wood Johnson University Hospital, Hamilton (NJ). Phone: (609) 631-6980. E-mail: firstname.lastname@example.org.