Could These Three Words Change the Way We Provide End of Life Care?

As most case managers on the frontline already know, hospitals have become environments where medical intervention is meted out to debilitated patients approaching the end of life. The indignities of noxious and often painful treatments, such as feeding tubes, catheters, and testing with no therapeutic goal, make comfort impossible for these patients. In addition to their high cost, these common life-prolonging interventions can result in greater debilitation and a host of costly complications including hospital-acquired infections, decubitus ulcers, mental deterioration, serious drug reactions and persistent pain and discomfort. The current hospital-based, medical model functions within a system that appears to devalue those precious final days while utilizing life-sustaining interventions that often deny dignify and peace. There must be a better way to pass through this final stage of life.

The Patient Self Determination Act of 1990 mandated that hospitals provide every patient with written information on the right to be involved with treatment decisions. The advanced directive has become the primary tool to express end-of-life preferences and case managers or social workers are often called upon to help patients and families through the process of determining end-of-life decisions. Ideally, each patient who enters the health care system would have an advanced directive that outlines the parameters of care desired and their own definition of a “good death.”

But the reality is that only a small percentage of patients admitted to the hospital have prepared advanced directives, and many families believe that the stressful nature of a hospital admission makes it an inappropriate time to discuss such an emotionally charged issue as death. Once patients have made known their wishes through an advanced directive, a do not resuscitate (DNR) order is typically executed by a physician or other authorized practitioner, with the consent of the patient or family or legal guardian and issued according to the current standards of care.

In many hospitals, case managers, social workers and nurses are strategically placed to minimize the distress experienced by family members as they watch their loved one connected to myriad tubes and devices. They serve as liaison between the family and the medical team. In most hospitals, it falls to these dedicated professionals to advocate for patients and families who struggle to understand the clinical decisions being made by an often impervious medical team.

The airing of a 60 Minutes segment entitled “The Cost of Dying” in November 2009 brought awareness of the cost and suffering attached to the 25-30 percent of deaths that reportedly occur in the acute care setting and of the dilemmas posed by chronic illness, advanced aging and impending death. Articles about the medicalization of the end of life appear with increasing frequency in the popular media, emphasizing the high cost in both dollars and anguish. While the controversy over the proposed physician reimbursement for end-of-life discussions deteriorated into accusations to create “death panels” and alarmed many Americans, it did heighten the public’s cognizance of death and dying and opened the door for a discussion about the benefits of the allow natural death approach.

What Is Allow Natural Death?

Allow natural death (AND) is a formal designation that can replace the DNR order in hospitals and other health care facilities. AND is also a model of care that acknowledges aging and death as a natural part of life—one that foregoes aggressive technologies that treat aging as if it were a disease requiring curative interventions. The words themselves reflect the intention of allowing a more natural response to approaching death and places the highest value on providing kinder and gentler care to incapacitated patients, even if it means that life will be shortened when the emphasis is on quality of life rather than quantity. While DNR orders describe patient wishes for intubation or chest compressions or the administration of intravenous medications, AND orders additionally describe the patient’s instructions for the use of feeding tubes, administration of antibiotics, use of catheters, intravenous fluids and other methods of prolonging life. Without exception, AND orders emphasize provisions for comfort measures as needed.

Why Now?

The changing demographics of hospitalized patients have long been recognized by hospital case managers. Informed baby boomers are now accessing hospital services as are the surrogates for aging parents who are living longer than the generation preceding them. The number of Americans over the age of 85 will triple by 2050, with nearly 13.2 million people diagnosed with Alzheimer’s disease. According to a Gallup poll conducted in 1996, 90 percent of Americans expressed the desire to die at home surrounded by loved ones. This response has remained virtually unchanged. One in five patients die after receiving care in an ICU, and as many as 50 percent of those dying patients received care that was beyond their wishes during their last days of life, according to a report in the Journal of Palliative Care.

End-of-life care is also a key issue when it comes to slowing the growth of health care costs, given that patients with terminal illness require a disproportionate concentration of expenditures. Five percent of all Medicare patients die each year and spend almost 30 percent ($143 billion in 2009) of the Medicare budget, according to a recent study.

Acute care facilities, designed to administer sophisticated and aggressive care with the goal of healing and prolonging life, may not be the appropriate setting for the patient whose health deteriorates until finally it is difficult to discern whether care is extending life or postponing death. Too often clinical practice denies dignity and peace to those who are trying to die while staff is obliged to uphold policies and procedures. Absent formal acknowledgement of the impending death of these patients, providers are unable to provide care that brings value to the end of life. The use of the AND designation would make clear the intention of patients and families whose goals of care are to maintain dignity and comfort above all else.

Origins of Allow Natural Death

The basic concept of allowing natural death is not a new one. Before the widespread use of antibiotics, it was said that “pneumonia is the old person’s friend.” In those days, death often came to a frail elder at home within days or weeks of an infection in a body weakened by the normal aging process. Adherents to the hospice philosophy have always advocated natural death principles without consciously naming them, and hospice patients benefit from caregivers who “honor wishes to withhold or withdraw life prolonging treatment,” according to the goals of the National Hospice and Palliative Care Organization.

In the 1990s, The Reverend Chuck Meyer and his successor Amy Donahue-Adams formalized processes at end of life at Round Rock Medical Center in Texas by introducing the AND order as an alternative to DNR. Hospital case managers in Texas, Florida, Minnesota, Missouri and California report that AND has replaced the DNR order or was added to the patient’s choices for care. Caregivers often report that discussions about a DNR order elicit negative reactions from patients and families and often magnify feelings of guilt they might have.

“The DNR policy is often framed in terms of crisis; often, it’s offered only when death is imminent and the patient is too ill to participate in making decisions,” concludes a 2008 study from the American Journal of Nursing, while the AND approach emphasizes palliation and comfort measures.

Implications for Hospital Case Managers

The language of clinical practice is not readily understood by many families who are expected to share decision making at the best of times, and less so in the midst of a health crisis. The perceived meaning of the DNR has been skewed as Americans maintain inappropriate optimism regarding resuscitation outcomes. Conversely, some families view the DNR concept as condemning their loved one to death. Implementing an AND order is an opportunity to simplify the language used for planning the end of life. An AND approach enhances the possibility that preferred outcomes will be achieved. For our patients, AND means the legacy of a peaceful and dignified death for their loved ones to recall, rather than the stories of prolonged and futile suffering at the end of a life well lived. As proactive patient advocates, case managers and social workers are fitting candidates to take a leadership role in introducing the precepts of the AND philosophy.

While visiting a hospital in LaCrosse, Wis., we observed specially trained nurses meeting with families using the AND verbiage, resulting in Medicare costs that were the lowest in the United States during beneficiaries’ last two years of life. Case managers at Lee Memorial in Fort Myers, Fla., report that when the phrase “allow natural death” is used, “more often than not, the body language of the family will soften.”

How can case managers and social workers allow AND to prosper? Provide education to hospitalists, nurses and other care team members who confront end-of-life situations daily. Get the issue on the agenda of your hospital’s ethics committee and back it up with data or anecdotal evidence. As patient advocates, hospital case managers and social workers must be ready to provide practical information to families in language they can understand, and semantics can make a difference between genuine assistance and obligatory form completion.

Robin Taft, RN, BS, MS, is a health care consultant specializing in elder rights and end of life planning. She is currently writing a handbook to assist families who seek a more compassionate and dignified death. Her website is www.allowingnaturaldeath.org.

Stefani Daniels, RN, MSNA, ACM, CMAC, is the Managing Partner of Phoenix Medical Management, a national consulting firm exclusively devoted to solutions for hospital case management programs.