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How Health Care Providers Can Ensure Patients’ End-of-Life Wishes Are Known

15 November 2017

Mr. M, an elderly man with chronic lung disease, was found on the floor of his kitchen by a neighbor, who spotted his prone body through an open window. Emergency medical personnel noted that he had a weak pulse and low oxygen level.

Labs and imaging in the emergency department suggested that he was in respiratory failure from pneumonia, and he was quickly started on IV antibiotics and fluid support. However, his breathing grew more tenuous during his stay in the emergency department. The physician attending to him did not have access to the details of Mr. M’s medical history or end-of life-wishes, since his hospital and primary care physician had different electronic medical record (EMR) systems. Mr. M later experienced cardiopulmonary arrest in the emergency department, requiring a full resuscitation, intubation, and transfer to the intensive care unit.

No one present, not even Mr. M’s daughter, was aware that he had signed an advance directive — a document detailing his end-of-life preferences — let alone that it was available at his primary care physician’s office, a few miles away. It indicated that he never would have wanted to be resuscitated in the first place.

This uncomfortable scenario will sound familiar to most health care professionals. A 1995 studyfound that only one-quarter of patients with previously executed advance directives had those directives recognized during their hospitalization. Another study, in 2003, found that 35% of 911 calls from long-term-care facilities for patients in cardiac arrest were for patients with preexisting do-not-resuscitate orders.

It’s widely recognized that advance care planning (ACP) should be a central element of the way that patients, their physicians, and their families together decide which end-of-life care to provide. Efforts to boost participation in these conversations include the introduction of new billing codes to financially incentivize primary care physicians to discuss ACP, as well as grassroots advocacy efforts to highlight the importance of discussing end-of-life wishes. And yet these efforts to popularize the creation of advance care documents do not address an important issue: access to them.

Attempts to address it have included affixing documents to the refrigerator door and wearing wristbands that list one’s resuscitation preferences. Entrepreneurial ventures are also trying to close this gap. The joincake.com app allows users to answer a string of prompts regarding their end-of-life preferences and share them with loved ones through smartphone or computer. Another startup, Everplans, is a digital-content repository that will store advance directives for a monthly fee.

Some health systems, such as the University of Michigan, have developed protocols that would alert providers with EMR advisories of incomplete ACPs so that they can give patients advance-directive packets to fill out at home or with the help of a social worker. Patients are responsible for remembering to bring a completed packet with them to their next visit. The directive is then scanned into the EMR.

While these protocols are a step in the right direction, they don’t address one fundamental problem: If a patient is admitted to a different hospital, it is unlikely that physicians at that hospital will be able to access the information. Given the current fragmented state of health care, new innovative solutions are needed. Here are our recommendations.

Build a national registry. Perhaps it is time we give serious consideration to the development of a national electronic registry, either funded by government entities like the U.S. Department of Health and Human Services or coordinated by a nonprofit entity.

Such a national registry could emulate a number of state-level initiatives. For instance, Oregon’s Physician Orders for Life-Sustaining Treatment registry (POLST) ensures availability of patient preferences for life-sustaining treatment across settings of care. POLST forms are not legal documents like advance directives; rather, they are physician-signed orders executed by patients who are likely to die within the next year. This registry, for example, allows EMS personnel to obtain patients’ POLST forms and honor their wishes in the field.

The results have been impressive. According to a recent study published in the New England Journal of Medicine, nearly two-thirds of Oregonians died at home, compared with less than 40% of patients nationally. Moreover, they had less ICU usage in the last 30 days of life and were more likely to be discharged to their homes if hospitalized in the last month of life.

Several other national registries may serve as a model for informing medical decisions. For example, prescription drug monitoring programs, which are electronic state-managed databases, track prescriptions for controlled substances on a real-time basis. Physicians can check these databases to ensure patients being prescribed narcotics or benzodiazepines are not “doctor shopping” to support an addiction. Other national organ donation and transplant registries are similarly updated regularly with patient information to allow for dynamic movement along a priority list, and physicians regularly consult these registries in making clinical decisions for patients.

Engage the public sector. The sustainability of a successful initiative requires a stable financial base and an administrative home. It is unrealistic to rely on the private sector to provide such support over time; the public sector must be involved. The Oregon registry, for example, was developed by private philanthropy, but its operations are now funded by the state, with a planned endowment in the works. Another comparable effort is the U.S. Living Will Registry, a privately held organization whose models and services were utilized by Vermont, Washington, and Nevada state governments to construct their own state registries, which they administer and fund. Similarly, while the private sector is involved in organ procurement, national registries of patients waiting for various organ transplants are maintained and run by the state.

Federal government support for this endeavor can assure administrative consistency. States use varying nomenclature to describe advance directive documents — MOLST in New York, MOST in Colorado, and LAPOST in Louisiana, to name a few — which only adds to the confusion. A national standard would allow for a registry to be publicized more effectively, helping it to gain traction and ensuring that it is accessible across state lines. Physician participation may also increase if such a registry were housed at the federal level, particularly if accompanied by regulatory actions that encourage physicians to routinely check it, especially in acute situations.

Promote the use of billing codes for advance care planning. The federal government has an interest in ensuring the spread and uptake of advance directives that prevent expensive care that patients don’t desire. Medicare accounted for 15% of the federal government’s budget in 2016 and is projected to rise to 17.5% by 2027. Indeed, the Medicare Hospital Insurance (Part A) trust fund is projected to be depleted by 2029. Lowering the hospitalization rate at the end of life can help make sure Medicare is sustainable for future generations.

Simply handing patients the required paperwork for an ACP document and leaving the onus of completion on them is likely to yield low returns. The success of a national registry will depend on a coordinated effort by patients, families, and clinicians everywhere to populate the registry and make it a worthwhile tool. Although billing codes created by the Centers for Medicare & Medicaid Services (CMS) to pay for ACP conversations incentivize providers to discuss treatment preferences with patients, the codes are currently underused.

Promote local solutions. Health systems should invest in promoting innovative solutions in their local communities. One such health system community effort is Dr. Bernard “Bud” Hammes’s Respecting Choices program, which was launched in La Crosse, Wisconsin. It offers a validated curriculum for training nonphysicians to facilitate advance care planning. La Crosse’s success in getting its residents to complete advance directives — 96% of them have done so, compared with 30% nationally — has made headlines. The impact on health care expenditure are impressive: The average cost for a patient’s last two years of life is $18,159 in La Crosse, compared with $26,000 nationally. Beyond the economic benefits, patients can be assured that there will be no inconsistency between their specified wishes and their subsequent care.

We have a moral imperative to respect our patients’ choices and ensure that they experience the end of their lives with dignity and autonomy. Mr. M needlessly suffered, even though he made appropriate arrangements that he believed would prevent unwanted aggressive care. It is time to make sure his experience is the tiny exception, not the rule.

Get the full story at Harvard Business Review

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