Dementia Specific Advance Directives More Prevalent

An increasing number of people will experience dementia. Worldwide, the number of people living with dementia is projected to increase from 47 million in 2015 to 132 million by 2050.

Family members and clinicians are often unsure whether the care they provide for patients suffering dementia is the care that patients would have chosen. Across the care spectrum, including skilled nursing facilities, hospital wards, intensive care units, and outpatient clinics, family members and clinicians commonly encounter this dilemma.  

In light of this concern, Paula Span has penned an excellent article One Day Your Mind May Fade. At Least You’ll Have a Plan in the New York Times as part of the New Old Age Series.  The article discusses advance directives for those with dementia.  The article follows a recent article published in the Journal of the American Medical Association (JAMA).  

According to these articles, existing advance directives are not particularly helpful for those with dementia because of the way dementia progresses over time with corresponding diminishing cognitive function.  The New York Times article explains:

"Although [dementia] is a terminal disease, dementia often intensifies slowly, over many years. The point at which dementia patients can no longer direct their own care isn’t predictable or obvious. ... Moreover, patients’ goals and preferences might well change over time. In the early stage, life may remain enjoyable and rewarding despite memory problems or difficulties with daily tasks."

The dementia-specific directive describes the person's wishes  as "goals of care" and offers four options for each stage of dementia, directing the person to "[s]elect one of the 4 main goals of care listed below to express your wishes. Choose the goal of care that describes what you would want at this stage."  The directive divides dementia into three stages, mild, moderate and severe.

The purpose of the dementia-specific advance directive is to express your wishes based on the specific "phase" of dementia you may enter in the future.  The website for this directive is here from which the 5-page directive may be downloaded.  The NY Times article describes that the directive:

"...in simple language...maps out the effects of mild, moderate and severe dementia, and asks patients to specify which medical interventions they would want — and not want — at each phase of the illness."

There are already a number of types of advance directives, with recent pushes for Physician Ordered Life Support Treatment (POLST) and other initiatives, such as the Conversation Project, and the Five Wishes.

Paramedics Often Obstructed, Provided Insufficient Information On Nursing Home Calls

McKnight's reported recently the results of a new survey which finds that paramedics often receive little direction from nurses or medical records when handling end-of-life situations at nursing homes.  Results published in the Emergency Medical Journal conclude that the lack of direction was heavily associated with a lack of clarity in residents' wishes. Paramedics said records providing residents' end-of-life preferences are uncommon and are typically limited to resuscitation. 

Without proper records, paramedics are forced to make decisions based on perceived preferences when a patient is incapable of making a decision.  Differing opinions on how to handle end-of-life situations also were reported to have contributed to paramedics' uncertainty.

Researchers said several paramedics spoke of situations where nursing staffs attempted to influence the paramedics on whether to hospitalize residents. One paramedic mentioned that once he arranged for a patient to be treated at a nursing home and the “staff were unhappy because it meant they had to provide one-to-one care and actually look after someone dying.”

Another paramedic told researchers of a situation where a relative's opposition contributed to a patient being submitted to the hospital against her wishes.  Differing opinions and directives have lead to several deaths, including a 2015 incident in Minnesota, where an unconscious nursing home resident died after her husband told paramedics not to take her to the hospital. Firefighters attempted to resuscitate the resident, and were about to transport her to the hospital when her husband arrived and requested they stop their efforts. The woman was taken back into the nursing home, where she died 20 minutes later, resulting in a police investigation whether the emergency responders met legal requirements when they stopped trying to resuscitate the resident since she did not have a “do not resuscitate” directive. 

Simple Advanced Directives, such as a Living Will, are not enough for patients who are seriously ill of nearing the end of their lives.  Susan Tolle, director of the Oregon Health and Science University Center for Ethics in Health Care agrees, telling Reuter's Health that “[p]atients nearing the end of their lives who wish to set limits on treatments need to turn preferences into action with orders on a POLST,” or Physician Orders for Life Sustaining Treatment.  This is particularly true in Ohio, where Advanced Directives specifically require physician certification of a patient being either permanently unconscious or terminally ill as those terms are defined under Ohio law, in order to permit withholding or withdrawing life sustaining treatment, including CPR.   

"It's important for all nursing homes to clarify residents' preferences regarding resuscitation and intubation,” The Hastings Center research scholar Nancy Berlinger told Reuters. “Even more important: a facilitated discussion of values and goals that can be transcribed into instructions for every employee.”  “It is owed to the patient, the family and to that aide at three o'clock in the morning. It is owed to the paramedic,” Berlinger added.

The survey was conducted by Georgina Murphy-Jones of the London Ambulance Service NHS Trust and Professor Stephen Timmons of the University of Nottingham.