A Good Death: A Practical Guide to Maintaining Control of your End-of-Life Journey

Chapter 7

Advance Directives and Living Wills

While I thought that I was learning how to live, I have been learning how to die.
--Leonardo daVinci

We have talked about Advance Directives and Living Wills (hereafter referred to as Advance Directive (AD)) in order to ensure the treatment you receive if you are incapacitated is in line with your values and goals, but specifically what is an AD?
Advance Directives are legal documents that were first sanctioned in 1976 to allow individuals to make a written declaration of what life sustaining treatments they want to be continued, withheld or withdrawn at a time when it is clear further treatment will not benefit the individual or result in meaningful recovery. Advance Directives are completed by an individual at a time when they have full capacity for understanding what measures they want employed, withheld or withdrawn. Advance Directives are designed to protect patient autonomy under the belief that patients who lose decision-making capacity are more likely to receive the care they want if they document their wishes in advance or choose a surrogate decision maker, or both.(1) Advance Directives are invoked or enacted only when the individual has lost decision-making capacity or is considered incompetent to make decisions. An AD can only be revoked or revised by the individual who completed the AD (you). Your family, spouse, significant other, physician or anyone else cannot alter, change, override or nullify your AD. Your AD protects you from others stepping in and authorizing treatments you have designated you do not want. The AD also removes the burden of decision making on family or another surrogate decision maker, especially if they do not have any prior knowledge of treatment options desired. Although it is difficult for many people to discuss end-of-life and death, advance directives, along with discussions with family, friends and your physician will help to make this transition smoother. Doing this before a time of crisis will lessen the emotional burden on family or surrogate decision makers and will ensure you have a say in how you are cared for at the end-of-life. Studies have shown 73% of surrogate decision makers experience anxiety, 35% experience depression and 33% of family members experienced Post Traumatic Stress Disorder (PTSD) if they had to make end-of-life decisions for their loved ones without an advance directive to guide their decision making. This is one of the many important reasons why having end-of-life discussions and advance care planning is so important. Easing the burden placed on your family will ensure you receive the care you want while helping your family emotionally cope with your illness and death. With the aging population, this will only become more important in the coming years. (2,3)
A study conducted from 2000-2006 showed 42.5% of persons sixty-five years or older needed decisions regarding healthcare be made. Of those, 70.3% lacked decision-making capacity. Of those lacking decision-making capacity, 67.6% had an AD. Those who had an AD received care that was strongly in line with their wishes. This same study by Silveira, et. al. reported individuals who complete an AD or living will were more likely to want limited care (92.7%) or comfort care (96.2%) than all care possible (1.9%).
In 2010, up to seventy percent of community dwelling older adults had completed an AD.
When I first started working in the hospital in the 1970's, no one had an AD and people were often subjected to traumatic and futile treatments such as cardiopulmonary resuscitation (CPR). I don't remember anyone asking the patient if he wanted those things done to him. The physician ordered tests and treatments without consulting the patient or family. The patient was told what was going to be done, he was never asked if he wanted them done. Treatments were often painful and futile and yet were carried out knowing they would not save the patient or even prolong his life in any meaningful way. Often these treatments such as CPR, were more of a learning tool or teachable moment for young nurses and doctors, and I believe were done to benefit the staff and not the patient. I remember thinking as a young nurse that this was interesting, but I also had a stronger feeling that it was wrong. I felt it was disrespectful to the patient.
To promote the use of Advance Directives, Congress passed the Patient Self-

Determination Act in 1990 mandating all Medicare-certified institutions provide written

information regarding a patients' right to complete an AD.(4,5) Medicare-certified institutions

include hospitals, nursing homes, assisted living facilities, long term acute care hospitals

(LTAC), home health and hospice agencies as well as others. This is why every time you go to

the hospital you are asked if you have an AD. The AD is placed on the patient's chart and with

each hospitalization/admission and it is verified if the patient has made any revisions or revoked

the AD. This ensures the information is up to date and accurate. If you make any changes to

your AD, you should take the revised copy with you and have it placed in your chart. It is

preferable to complete a new AD whenever you make changes rather than making changes on

the existing AD. One day while working in the emergency department of a local hospital a

patient arrived in cardiac arrest and his wife brought a copy of his AD. His AD had so many

changes with items scratched out and penciled in and notes written in the margins that no one

was certain what the patient wanted and this made the AD useless.