Study’s findings leave no doubt: End-of-life wishes aren’t always met or known
Study’s findings leave no doubt: End-of-life wishes aren’t always met or known
Only 30% related wishes to family physician
Many patients don’t discuss their end-of-life wishes with physicians, but even if they do, those wishes often fail to be added to patients’ medical records, according to a recent study.1 “We expected to see some problems — that’s why we did the study — but we were surprised by the magnitude of the problem!” says Daren Heyland, MD, MSc, scientific director of the Clinical Evaluation Research Unit at Kingston General Hospital in Ontario, Canada.
Researchers surveyed 278 elderly patients deemed at high risk of dying during the subsequent six months and 225 of their family members at 12 acute care facilities in Canada between September 2011 and March 2012. They learned that before hospitalization, 76% of patients had given thought to end-of-life care, 48% had completed advance care plans, 73% formally designated a surrogate individual to make decisions regarding their care, and only 12% expressed a preference for life-prolonging care.
Of the group of patients who had talked about their wishes, the majority had done so with their families. Only 30% had related those wishes to their family physician and 55% had discussed their preferences with any member of their health care team. As a consequence of this inadequate communication, patient wishes for end-of-life care agreed with the medical order documented in medical records only 30% of the time, says Heyland.
The majority of the disagreements involved a situation in which the patient preferred comfort care, and the medical record documented full resuscitation. “The ethical imperative is to first do no harm, provide only beneficial treatment, and focus on patient-centered care. We have described a situation in which we are signing up patients for aggressive treatments at the end of life that are not desired and may prolong suffering,” says Heyland.
Availability is issue
Even if the physician is notified that the patient has an advance directive, it isn’t always readily available to the health care team. Patients might complete the form with their lawyer, place it in a drawer at home, and forget to bring it to their doctor.
Increasingly, hospitals are entering advance directives into electronic medical records (EMRs). “Some states are developing registries so advance directives can be downloadable at a variety of locations,” says G. Kevin Donovan, MD, MA, director of the Pellegrino Center for Clinical Bioethics at Georgetown University Medical Center in Washington, DC.
EMRs at many hospitals, such as the San Francisco VA Hospital, have an “advance care planning discussion” note that can be updated at any time. “Then all advance directive documents and consecutive notes are displayed in one place with a click of a button,” says Rebecca Sudore, MD, associate professor of medicine at the University of California, San Francisco. “The problem is that most EMRs do not have standardized places for this information. Even if they do, it is hard to find and use.”
While clinicians are used to the idea of advance directive forms and check boxes, some are unfamiliar with the idea of documenting conversations about goals of care. Clinicians should document a standardized set of information in addition to any forms the patient has completed, urges Sudore. “It is more than just copying and pasting a ‘Do Not Resuscitate,’ ‘Do Not Intubate,’ or full code order,” she says. “What is the patient’s story? What is important to them in life? How do they want to live their life? Who is their surrogate?”
Clinicians are often uncomfortable bringing up the topic or do not have the time. “In our pilot work, 60% of individuals with chronic illness had never thought about speaking to their doctor about their goals for medical care,” says Sudore. “It didn’t occur to them that they should bring this up in the outpatient setting.”
Choices “almost limitless”
Patients and their family members are faced with ever-increasing decisions to be made, says Barbara J. Daly, PhD, RN, FAAN, professor of bioethics at Case Western Reserve University in Cleveland, OH. “The decisions are always fraught with uncertainty,” she says. “In past decades, the choices were fairly limited and the outcomes somewhat easier to predict.” Patient wishes to forego what were considered as “life-saving treatments” were simpler to implement — typically to withhold dialysis, mechanical ventilation, and cardiopulmonary resuscitation.
“In today’s world of almost limitless choices, patients and families are taxed with a series of decisions about feeding tubes, amputations, repeated surgeries, and third and fourth regimens of chemotherapy,” says Daly. “Even in the presence of a living will, it is rarely clear precisely how to perform the benefit/burden calculus in very complex conditions with uncertain outcomes.”
Physician Orders for Life Sustaining Treatment (POLST), Medical Orders for Life-Sustaining Treatment (MOLST), Clinical Orders for Life-Sustaining Treatment (COLST), and Physician Orders for Scope of Treatment (POST) forms attempt to address one of the limitations of current living will forms, says Daly. “Most living wills are ‘all or nothing’ documents, but treatment decisions are much more nuanced than that,” she explains.
In many situations, patients are willing to have a trial of an intervention, such as a short period on a mechanical ventilator, but do not wish to have the treatment continued indefinitely. “The POLST paradigm forms allow the signer to indicate this ‘trial’ choice, as well as to indicate refusal of any use of the treatment, or to indicate willingness to use the treatment, and allow the signer to choose among treatments, rather than having to refuse all,” says Daly.
Conflicts with family
Even when the medical team is fully aware of the patient’s preferences and an advance directive is in place, the patient’s wishes aren’t always followed. “The physician may choose to override the advance directive if the family is adamantly opposed to those preferences. This is something that is often not discussed,” says Donovan.
It is increasingly common for family members, acting as surrogates for a patient who can no longer speak for him- or herself, to insist on continuing interventions that the clinician believes will do more harm than good, according to Daly. “Well-meaning family members, under enormous stress of the illness of a loved one, may insist on adding more treatments and more interventions, even when informed that the proposed treatment cannot work,” she says. “This can lead to adversarial relationships if not managed carefully and with great sensitivity.”
Bioethicists can be helpful on both sides of this interaction. “Patients and their families often need support and guidance in making difficult choices,” Daly explains. “Health care providers often seek assurance that they are fulfilling their obligations, or help in finding approaches that can satisfy the ethical demands of complicated situations.”
Donovan says the ideal scenario is for patients to have a health care proxy who fully understands their values and is willing to insist that the patient’s wishes are followed. “The advantage to having a proxy is that a surrogate can be somewhat flexible in the application of those values in different clinical situations that may not have been envisioned by the patient themselves,” he says. “If EMRs identify the patient’s proxy, the team not only knows what the patient wants done, but also who they ought to be talking to. That person can then speak with the patient’s voice.”
Reference
1. Heyland DK, Barwich D, Pichor D, et al. Failure to engage hospitalized elderly patients and their families in advance care planning. JAMA Intern Med 2013. [Epub ahead of print].
Sources
• Barbara J. Daly, PhD, RN, FAAN, Professor of Bioethics, Department of Bioethics, Case Western Reserve University, Cleveland, OH. Phone: (216) 368-5994. E-mail: [email protected].
• G. Kevin Donovan, MD, MA, Director, Pellegrino Center for Clinical Bioethics, Georgetown University Medical Center, Washington, DC. Phone: (202) 687-1122. E-mail: [email protected].
• Daren Heyland, MD, MSc, Scientific Director, Clinical Evaluation Research Unit, Kingston General Hospital, Ontario, Canada. Phone: (613) 549-6666 ext. 4847. E-mail: [email protected].
• Rebecca Sudore, MD, Associate Professor of Medicine, University of California, San Francisco. Phone: (415) 221-4810 ext. 3475. E-mail: [email protected].
Many patients dont discuss their end-of-life wishes with physicians, but even if they do, those wishes often fail to be added to patients medical records, according to a recent study.1 We expected to see some problems thats why we did the study but we were surprised by the magnitude of the problem! says Daren Heyland, MD, MSc, scientific director of the Clinical Evaluation Research Unit at Kingston General Hospital in Ontario, Canada.Subscribe Now for Access
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