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Until recently Advance Directives have only included the Living Will, Durable Power of Attorney for Healthcare and Do Not Resuscitate (DNR).
The Missing Link of Advanced Directives
The Missing Link of Advance Directives.
Until recently Advance Directives have only included the Living Will, Durable Power of Attorney for Healthcare and Do Not Resuscitate (DNR). While these documents are valuable to assure your end-of-life choices, what happens to an individual when they require the care of others and are not at the end of life? Often precipitated by a crisis, such as a stroke, accident or memory impairment an individual can become dependent on the choices of others. Often these choices are made by family, friends or healthcare providers unfamiliar with the individual's lifestyle, history, values, preferences, habits and routines.
Advance Directives are your "voice" for the future. You may need care in later years and not be able to make your own decisions and choices. If you document your wishes, while still able, it becomes a way to control what happens to you.
Traditional Advance Directives include:
Living Will:
Covers health care decisions when you are terminally ill or comatose, and describes the type of medical treatment you would want in these situations. In addition, it should include under what conditions life-sustaining treatment should be started or stopped.
Durable Power-of-Attorney for Healthcare:
Permits you to name another person to make your healthcare decisions when you are unable to do so.
Do Not Resuscitate (DNR):
Request not to have cardiopulmonary resuscitation (CPR) if your heart stops or if you stop breathing. This type of directive is generally not executed until you are terminally ill.
These traditional Advance Directives are valuable and needed documents. However, what happens to an individual that requires the care of others and is not at the end of life? Let's explore "the missing link."
In addition to executing Advance Directives, according to the laws of your state, it is critical to have extensive discussions with persons whom are important in your life. A crisis is not the time to begin discussions.
Advance Directives are also frequently referred to as "advance care plans." Are they really care plans or just documented end of life wishes? A care plan is: An individualized action plan developed to identify problems or needs; define a goal or goals to overcome those problems or meet those needs; determine methods of approach to meet (those goals, and designate the persons) who are responsible for the implementation of the plan. The care plan defines what each person will do and when it will happen. For example, a nursing assistant will help Mrs. Jones walk to each meal to build Mrs. Jone's strength.
A care plan should be a guide for caregivers to provide consistent, targeted, organized care in order to meet and measure a person's progress toward healthcare and quality of life goals.
Typically, when someone requires the care of others, they may be unable or have limited ability to make their values, preferences, habits and routines known. Spouses may no longer be living and children may have been living apart for many years. There may be no one who really knows the daily routine of that individual.
When placed in the care of others, whether it is at home, an assisted living or a nursing home, the small details of who an individual really is often defines the quality of their life. For an example of a small detail, one might think is inconsequential, but in reality is of monumental importance, read the following story.
Ruth's Story
Ruth, age 82, has slept with six down pillows since she was in her fifties. Her grown children are unaware of this, and her husband is deceased. Due to some mild arthritis, she is only comfortable and able to sleep if the pillows are positioned in such a way that they support her arms and legs. Following a hip fracture and subsequent hospitalization, Ruth goes to a nursing home for an anticipated five-week rehabilitation stay. She is assigned a room and given one pillow for her bed. Her recent injury, hospital stay and transfer to the nursing home understandably disorient Ruth, who already suffers some mild short-term memory loss. The physician she has just met on admission to the nursing home has diagnosed her with early Alzheimer's disease.
The staff interprets her request for six down pillows as "confusion" and charts this in her record. Her family consists of two daughters, one in Texas and one in Illinois. The staff assists her to call them on the phone, but her continued requests for the pillows is both annoying and confusing to them, and Ruth's ability to communicate effectively over the phone is hampered by her moderate hearing loss and growing frustration over her inability to sleep. In an attempt to address Ruth’s needs, the staff requests a sleeping pill from the physician. This order is given, and Ruth is started on a sleeping pill. The medication works, and Ruth sleeps well for the first time since admission. However, she sleeps so soundly, that she is incontinent of urine during the night.
The staff applies an adult incontinent brief, believing that they are sparing Ruth from the embarrassment of incontinent episodes. Ruth tries to explain to the staff (who believe her to be somewhat demented) that she can use the bathroom, but they are not responsive to this. Ruth, who is fully ambulatory following several days of rehab for her broken hip, makes repeated attempts to get up the bathroom by herself to show the staff that she simply doesn’t require the adult incontinent briefs (which the staff refers to as "diapers"). Her attempts at unassisted ambulation are interpreted by the staff as further evidence of her confusion, and they place an alarm on her bed and a seatbelt in her wheelchair (it is unclear when or why she was given a wheelchair).
So Ruth, who previously lived independently in her own home, is now both chemically and physically restrained, has been given a diagnosis of Alzheimer's disease, wears "diapers" and is essentially wheelchair bound. She is depressed and despondent. Her five-week rehab stay is now anticipated to be permanent placement due to Ruth's "need for 24 hour care and supervision." Why? Because she needed six down pillows and no one was aware of this, or held accountable for acknowledging it.
How can we prevent Ruth's story continuing multiple times each day in this country? We need to document our own, our loved ones and our clients: History, Lifestyle, Values, Preferences and Routines, so this knowledge is available if the need arises. An additional step would be to create your own, loved ones or client's care plan in advance of need.
Until recently there was no comprehensive tool in widespread use to gather in one place an individual's biographical information, medical history, lifestyle, values, and preferences. The common language of care providers is the care plan. Since the inception of Advance Directives, the responsibility for gathering this information has fallen on the shoulders of the medical community. Advance Directives can and should be more than "end-of-life" care. There is a lack of education available to the general public emphasizing their entitlement to remain intact as a whole person when in the care of others.
Help change the current care model from the "Golden Rule," "Do unto others as you would have them do unto you." to the "Platinum Rule" "Do unto others as they would do unto themselves." (Coined & trademarked by Dr. Tony Alessandra).
Jill B. Thomas RNC, LNHA is the Vice President and Founder of Advance Care Planning, Inc.,
