An “Advance Care Directive” (also referred to as a Living Will) is a document stating the specific medical treatment you do or do not wish to receive. In order to make an Advance Care Directive you must
- have legal capacity, and
- the document must set out the medical treatment that you want to receive in a clear and unambiguous way
Advance Care Directives enable you to set out the medical care you wish to receive when medical technology might be required to keep you alive.
Importantly as you may lack the capacity to make decisions about your medical treatment the person or persons you appoint as substitute decision-makers, family members and significant others must be informed of your medical wishes.
After watching her mother suffer as a result of dementia Brenda Grant made an advanced care directive stating that if she lacked capacity or suffered from certain medical ailments, she should not have treatment to prolong her life. It was reported that Brenda had a fear of being kept alive because she had a fear of going into a nursing home, and didn’t want to be a burden to her family and friends. Specifically she did not want to be artificially fed, however wished that her symptoms be controlled by pain relief medication even though the treatment might shorten her life.
In October 2012, Brenda suffered a stroke that left her unable to walk, talk or swallow. After nearly three months in hospital she was fitted with a tube so she could be fed directly, then discharged into a nursing home. Once there, Brenda became agitated and tried to pull out the tubes in her arm, prompting staff to put mittens on her hands. The hospital records were fairly extensive and they had had misplaced the document and none of her family knew about it.
Brenda’s GP alerted the family of the existence of the advance care directive prior to her readmission to hospital. Brenda had been artificially fed for a total of 22 months before her tubes were withdrawn. She died a few days later, on the 4th of August 2014.
The family sought legal advice to highlight the case so the same thing did not happen to others. The hospital admitted liability and in an out-of-court settlement agreed to pay damages. It stated that the hospital had “failed to act in accordance with the deceased’s advance directive and failed to store the advance directive in a way that it could easily be noted.”
The hospital introduced new administrative processes and now records the existence of an advanced directive on the front page of a patient’s notes.
Recently Missouri has enacted a new law establishing the Advance Health Care Directives Registry, to safely store advance health care directives online for direct access by authorized health care providers. The law provides for the creation of a registry in order that a confidential document may be submitted electronically by health care providers or licensed attorneys.
It is hoped that having a health care declaration uploaded to the registry will ease the process of caring for patients who are or become incapacitated and allow their loved ones to act quickly and to alleviate the undue burden on them during an already difficult time.
In the US a wife is the most common person named as a health care proxy to make health care decisions for their spouse in the event that they can no longer make those decisions themselves.
In Australia each State and Territory has provision for people to create an Advance Care Directive also referred to as a living will. An Advance Care Directive is a written document enabling a competent adult to nominate the equivalent of a health care proxy, to record preferences for future health and personal care, or both. There is a facility to update the Department of Health My Health Record with information regarding Advance Care Directives.
If you don’t complete an advance care directive a court order might be necessary to appoint an individual to make decisions related to your on going medical treatment, leading to added expense, delay, and effort which can be avoided by your having executed an advance care directive. Importantly you should discuss with your Doctor your wishes regarding health care decisions, and execute advanced care directives accordingly.