Most people have heard the admonitions regarding end of life planning: Let your wishes be known! Not surprisingly, we tend to avoid the nitty-gritty of our mortality and that of family members’…hoping perhaps that we will all be among those who go quietly while watching cable. Should you have some level of control and choice about your death and the time immediately preceding, what care would you like to have?
When we review the advanced directives list of “choices” it seems natural to want cardiopulmonary resuscitation (CPR), fluids, and food-preferably chocolate. However, for elders with complex health conditions including late stage dementia, the consequences of these measures are not necessarily compatible with long term survival, or a peaceful and pain-free death.
Myths and misinformation regarding end of life care abound. Consider the DNR (Do Not Resuscitate) order. CPR was developed to rescue individuals experiencing sudden unexpected cardiac arrest due to a heart attack, drug overdose, hypothermia, drowning accident, or other reversible condition. However, bone crushing chest compressions, cardioversion and intubation are all part of the process now widely used to treat arrests in people with severe underlying illnesses and poor overall likelihood of survival. In the majority of cases, studies show that CPR is not the happily-ever-after success usually portrayed on the medical shows on television.
On one level this is a no-brainer, it’s television, right? However, in the absence of opposing imagery and narrative, we tend to go with what we “know.” One study reviewing 97 episodes of the television shows “ER,” “Chicago Hope,” and “Rescue 911” in which CPR was depicted revealed that 75% of persons survived the immediate arrest and that 67% survived to hospital discharge, However, a review of actual outcomes is reported in a Canadian study by Titlayo, et al published in Clinical Geriatrics .They found that of 247 hospitalized patients who experienced cardiac arrest and underwent CPR only 22.4% of those with witnessed arrests survived to hospital discharge, and only 1% of those with unwitnessed arrests survived CPR to hospital discharge.
Similar outcomes are described in many other studies, revealing the actual consequences of a “Full Code” for elders with severe illnesses. And yet, to proclaim “DNR” somehow seems like giving up. Charlie Sabatino, of the American Bar Association Commission on Law and Aging notes “The message behind the term ‘do not resuscitate’ is predominantly negative, suggesting an absence of treatment and care. The reality is that comfort care and palliative care are affirmative and, for these patients, more appropriate interventions.” Maybe it is time for a new set of initials on the chart such as “MMC” for Make Me Comfy!” In the United Kingdom and some other countries the initials “AND” for “Allow Natural Death” are used, and do indeed convey a more positive and affirming stance regarding end of life care.
When patients with end-stage Alzheimer’s disease stop eating or experience significant difficulty swallowing, enteral (tube) feeding is inevitably considered. An extensive review of existing literature by Finucane and associates published in the Journal of the American Medical Association concluded that there was no evidence that tube feeding among these patients prevents aspiration pneumonia, prolongs life, reduces incidence of pressure sores or infections, improves function, or provides palliation.
Another end of life care challenge is the hospitalization of late stage Alzheimer’s nursing home patients. A study in the New England Journal of Medicine Sept. 29, 2011, edition reports that nearly one in five nursing home residents with advanced dementia experiences burdensome transitions in the last 90 days of life, such as moving to a different facility in the last three days of life or repeat hospitalizations for expected complications of dementia in the last 90 days of life.
Study co-author Joan Teno notes that “Such patterns of transitions are burdensome, particularly since the overwhelming majority of family members state the main goal of care is comfort.” The transitions are burdensome because they raise the risk of medical errors and interrupt continuity of care for patients who often experience significant distress when they are suddenly removed from their familiar surroundings and caregivers.
While some hospitalizations are unavoidable, many are unnecessary, and reflect the inefficiency of our health care system, according to Dr. Teno. Conditions such as pneumonia, urinary tract infection, dehydration, and others could effectively be treated in a properly equipped and staffed nursing home.
Unfortunately, burdensome transitions may be driven by the way Medicare pays nursing homes for patients who have been transferred to a hospital for at least three days and then qualify for skilled nursing services paid by Medicare rather than Medicaid upon their return. Also of interest is the finding that different areas of the country had varying rates of these burdensome transitions. In Alaska, the percentage of patients experiencing at least one burdensome transition was just 2 percent, while in Louisiana it was 37.5 percent, the investigators found. What’s more, areas with those higher rates of burdensome transitions had higher rates of poorer outcomes.
The notion that “just because you can doesn’t mean you should” rings true in today’s healthcare arena. As we seek to identify best practices, based upon sound evidence to manage end of life care for elders with late stage dementia, it becomes increasingly clear that we have much to learn. There are currently more than 1.8 million Americans with end-stage dementia, characterized by the person’s inability to recognize friends or family members, lack of communication skills, and dependence with activities of daily living such as dressing, and bathing. This number will swell as baby boomers crest into the terminal phase of Alzheimer’s disease.
When Alzheimer’s patients become unable to speak for themselves their families agonize about doing the right things in the moment, and long after. Specialists in palliative care and bioethics are now a part of every hospital’s clinical team, and may be included to help families and physicians make informed, appropriate care decisions for patients with advanced dementia. It is first and foremost important to ask the care team “What is the GOAL of care?”
In spite of the math, foretelling a community densely populated with families struggling to care for loved ones, ours –and most communities are entirely unprepared for the challenge. A most appropriate and caring solution, a residential Alzheimer’s Hospice, has yet to evolve in spite of ample need. Such a resource could provide immeasurable benefit for east Tennesseans taking part in the long, arduous and lonely Alzheimer’s journey. In the meantime, elders and their families should take advantage of the Medicare benefit that provides for a thoughtful, informed discussion with your physician regarding end of life care for you and yours.
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