Study shows 70% of patients lack advance directives before elective surgery

by Regenstrief Institute

Only 30% of pre-op patients reported having some form of Advance Directive documenting their wishes regarding emergency medical care. Only 16% had one on file in their electronic medical record (EMR) where a clinician could access it at the time of surgery. When there is no record of care preferences, families must decide what kind of emergency care their loved one receives. Credit: Regenstrief Institute

The majority of people visiting preoperative testing clinics before an elective surgery do not have an advance directive (AD) in case of surgical complications. This can lead to situations where patients' families are forced to make tough decisions about their loved one's care.

18 jun 2019--A study from researchers at the Regenstrief Institute, Indiana University Health and Indiana University School of Medicine found that only 30% of the patients in the study reported having some form of AD documenting their wishes regarding emergency medical care. However, only 16% had one on file in their electronic medical record (EMR) where a clinician could access it at the time of surgery. When there is no record of care preferences, families must decide what kind of emergency care their loved one receives.

An advance directive is a legal document stating the patient's wishes for care if he or she is incapacitated. These preferences can include whether or not the person wants to receive CPR or intubation or who is in charge of making care decisions on their behalf. If there is no AD, doctors turn to a priority list of people, reaching out to them, in order of priority, to make the decision.

The lead author of the study, Shilpee Sinha, M.D., is the service line lead for the Adult Academic Health Center for Palliative Care at IU Health in Indianapolis. She sees patients every day who are at an increased risk of surgical complications. "When a crisis does occur," Dr. Sinha said, "family members tend to project their own emotions into what they think is best for the patient, but their choices may not be what the patient actually wants."

Dr. Sinha and her colleagues looked at EMRs of 400 patients who underwent preoperative evaluation. They found only 16% of those people had some form of AD on file.

Dr. Sinha performed this research as part of The Advanced Scholars Program for Internists in Research and Education (ASPIRE). ASPIRE is a one-year program through the Division of General Internal Medicine and Geriatrics at IU School of Medicine and the Regenstrief Institute that provides physicians in clinical practicewith a chance to hone their skills in research.

"One of my goals for doing this study is to drive clinical change," said Dr. Sinha. "The discussion of advance care planning is not part of the established routine. I think we've achieved buy-in on the idea of having these conversations. Now we need actual logistical application."

Regenstrief researcher Alexia Torke, M.D., M.S., was Dr. Sinha's mentor through the ASPIRE program, and senior author of this paper. She has conducted extensive research in surrogate decision making.

"When an AD is not available in cases of emergency, it creates a complex situation for the care providers and surrogate decision makers. Emotions are often high, and family members may have difficulty navigating those emotions to make the best decision for their loved ones," said Dr. Torke. "Work like Dr. Sinha's is very important. These findings suggest there is a significant opportunity for improvement in advanced care planning in the clinical setting."

"Advance Care Planning in A Preoperative Clinic: A Retrospective Chart Review" was published in the Journal of General Internal Medicine. The study was funded through the ASPIRE program. Dr. Torke was supported by a Midcareer Investigator Award in Patient-Oriented Research (K24 AG053794) from the National Institute on Aging.

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More information: Shilpee Sinha et al, Advance Care Planning in A Preoperative Clinic: A Retrospective Chart Review, Journal of General Internal Medicine (2019). DOI: 10.1007/s11606-018-4744-8

Journal information: Journal of General Internal Medicine 

Provided by Regenstrief Institute 

Advance directives can benefit patients, families, and health care system

Nearly one out of four older Americans say that either they or a family member have experienced excessive or unwanted medical treatment, according to the latest issue of The Gerontological Society of America's Public Policy & Aging Report (PP&AR), which goes on to show that Americans strongly support holding doctors accountable when they fail to honor patients' end-of-life health care wishes.

02 nov 2014--This PP&AR, titled "Advanced Illness Care: Issues and Options," features 12 articles that present new ways of understanding the complexity of securing appropriate advanced illness care and the decision-making dilemmas it presents. It also provides a valuable benefit by reviewing specific programs, demonstrations, and tools that family members and providers can use in providing care to persons with advanced illness. These models are person- and family-centered, and preliminary evaluations find that they may be cost-effective as well. Support for the publication was provided by Compassion & Choices.

"It is important to ensure that patients and their wishes are what drive the health care system, particularly at the end of life," said Daniel R. Wilson, the national and federal programs director for Compassion & Choices. "We were pleased to partner with The Gerontological Society of America to publish this issue of the PP&AR, which includes cutting edge writers and thinkers in the advanced illness and end-of-life field."

Advanced illness is defined as the period of illness when functioning and quality of life decline and where the efficacy of continued treatment is open to both medical and ethical question. Yet, as illness becomes more debilitating, clinical interventions often become more frequent. Studies show that the average Medicare beneficiary with one or more chronic conditions sees eight different physicians each year. It is at this stage when the medicalization of health care tends to overtake and overwhelm the needs and wishes of patients themselves. Advanced illness, due to disease, chronic conditions, or disability, can happen to anyone at any age. However, the vast majority of people with advanced illness are older than 65.

"Recent experience and studies make clear that well-informed individuals and their families often choose less care, in less institutional settings, often resulting in improved quality of life," state Robert B. Hudson, PhD, and Brian W. Lindberg, MMHS, in their introduction to the issue. "It has become clear that palliative care and hospice care are often not provided soon enough, and that in-depth conversations with persons with advanced illness can help articulate treatment and life-style preferences that the health care system has often ignored or missed."

Among the discussion of new models and tools that have been developed in recent years to better address advanced illness dilemmas and decisions, Charles Sabatino, JD, the director of the American Bar Association's Commission on Law and Aging, highlights more than a dozen resources for updating and codifying preferences. He lists these under four headings: getting the conversation going, comprehensive advance planning tools, guides focusing on certain illnesses or decisions, and advance directive registries.

The new PP&AR comes on the heels of a major report released by the Institute of Medicine this fall, which was titled "Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life." Its findings demonstrated that improving the quality and availability of medical and social services for patients and their families could not only enhance quality of life through the end of life, but may also contribute to a more sustainable care system.

Provided by The Gerontological Society of America

Opinion: Advance directives may be answer to resuscitating the geriatric autopsy

By Fredrick T. Sherman
22 dec 2008--Leslie S. Libow, MD, an icon in academic geriatrics and long-term care, and an esteemed member of our Editorial Board for many years, and his longtime colleague Richard R. Neufeld, MD, have written a thoughtful and thought-provoking article on autopsies in the elderly¹ for this edition of Geriatrics. Drawing on more than 40 years of clinical experience in academic geriatrics and long-term care, they describe both the benefits of autopsies in hospitals and nursing homes, and the burdens and risks of obtaining them. They address their arguments to clinicians, medical educators, researchers, administrators, legislators, and most importantly, to elderly patients and their families.

The autopsy rate in hospitals in this country is abysmally low—less than 5%.² Ask any primary care physician when he or she has had an autopsy done on a nursing home patient and the answer is "never." Drs. Libow and Neufeld attribute this low rate of autopsies to negative physician attitudes because of the extra time involved, fear of malpractice suits, and a misunderstood desire to limit suffering. In addition, they cite the cost (about $1000 per case) and the over-reliance on imaging studies, which give a false sense of diagnostic security, ie, that these non-invasive studies yield definitive answers and nothing can be learned from the autopsy.

Drawing on their experience in establishing successful nursing home autopsy programs, the authors propose two additions to the typical panoply of advance directives that could lead to increasing the number of autopsies:

1) "Advance Consent to Grant Autopsy" or permission for autopsy in the standard advance directives, is a state and/or federally legislated procedure, which would formally allow the elderly individual with capacity to agree to an autopsy; and

2) "Advance Intent to Grant Autopsy," a discussion initiated by the physician to determine and document the wishes of the older patient regarding autopsy in states with no formal procedures. Upon death, the family of the deceased will know the wishes of their relative, thus removing the difficult decision-making that takes place when the family has no idea about their loved one's wishes.

To these two innovative ideas, I would add another legal vehicle, an "Advance Payment for Autopsy" clause in the older adult's will. Such a clause would stipulate that the autopsy be paid for by money from the deceased's estate, a clear directive that the deceased wanted an autopsy. The "Advance Payment for Autopsy" clause would relieve the family of any decision-making and financial burden at the time of death.

In addition to the clinical and educational values of autopsies, Drs. Libow and Neufeld emphasize the proven value of nursing home autopsy programs in advancing research, citing specific contributions in Alzheimer's and Parkinson's disease, macular degeneration, and cardiovascular and neoplastic diseases.

While I hope that the authors' calls for increasing the autopsy rate in both nursing homes and hospitals are heard, I remain concerned about the negative impact of both the managed-care penetration into nursing homes and the hospitalist movement.

And now a little bit of history! In 1975, Dr. Libow gave me my first job. He hired a young, newly trained internist with an interest and enthusiasm for the burgeoning field of geriatrics but little knowledge. As an attending and teacher in one of the first "teaching nursing homes" in the country, I quickly learned the principles of clinical care of the elderly under his tutelage.

Like hundreds of other academic geriatricians in this country, I have been taught many things by Dr. Libow. Here are three educational experiences that are etched in my mind:

First, his bedside teaching rounds where he demonstrates the art and science of interviewing the elderly patient, elicits a host of geriatric physical findings, and leads a dynamic discussion about aging, disease, disability and hope with students, fellows and faculty;

Second, his leadership of a weekly interdisciplinary conference that he calls "The struggle of the ill elderly." ³ Here, after presentations by multiple disciplines, he interviews both the older nursing home patient, who is struggling to return to their own home after a subacute, or less likely, long term nursing home stay, and their caregivers. In front of the interdisciplinary team, geriatric fellows, and medical students, he asks probing questions that allow the team to assess the benefits and burdens of leaving the nursing home, the strengths and weaknesses of the patient-caregiver dyad, and the safety of the transitional care plan; and

Third, his pursuit of autopsies on nursing home patients. I remember him walking with us to the autopsy room where he stood at the head of the OR table, commenting on the clinical issues as the elderly patient's history was presented and then questioning the pathologist about the subtle differences between a geriatric autopsy and that of middle-aged and younger adults.

It's now almost three and half decades later and his insights about autopsies in the elderly are more important then ever.

Dr Sherman is professor of geriatrics and medicine, The Brookdale Department of Geriatrics and Adult Development, Mount Sinai School of Medicine, and medical director for Senior Health Partners, New York, NY. He won the 2008 Jesse H. Neal award for opinion columns from American Business Media.

Send comments to Dr Sherman at fsherman@advanstar.com

References

1. Libow LS, Neufeld RR. The autopsy and the elderly patient in the hospital and the nursing home: Enhancing the quality of life. Geriatrics. 2008;63(12):14-18, 26.

2. Nemetz PN, Tanglos E, Sands LP, et al. Attitudes toward the autopsy — an eight state survey. MedGenMed. 2006;8(3):80.

3. Libow LS. A geriatric medical residency program. A four-year experience. Ann Intern Med. 1976;85(5):641-7.