“Thinking about death clarifies your life.” -Candy Chang
Amyotrophic Lateral Sclerosis (ALS), commonly known as Lou Gehrig’s disease is a neurodegenerative disease that is characterized by loss of motor control and eventual death. ALS involves the death of motor neurons and the progressive loss of motor function. Patients with ALS slowly lose control of their limbs, their body systems and finally speech. ALS patients however never lose their cognitive function; while their body is declining, their mind is fully functional. ALS eventually leads to loss of respiratory function and patients spend their last months or days on a ventilator. As time progresses, quality of life declines for those suffering from ALS. This progressive loss is characteristic of many degenerative or terminal diseases: multiple sclerosis, Parkinson’s, Huntington’s, and some cancers. Our class discussion on ALS and its effect on quality on life led to a discussion on creating an end of life plan.
Advanced Care Planning (ACP) is the process of communication between the individual, family, and healthcare professional to understand, discuss, and plan for future healthcare decisions for a time when the individual is unable to make their own healthcare decisions. The process typically results in the designation of a healthcare proxy and a written care plan referred to an advanced directive. An advanced directive or living will lays out the individual’s wishes when it comes to ventilation and being resuscitated. Living wills are typically created for patients suffering from a chronic or terminal condition. 7 out of 10 Americans die from a chronic disease and over 90 million Americans live with at least one chronic condition. In theory, 70% of Americans should have an advanced directive, however only 20-30% of Americans report having a living will. This means that some 40% of individuals who know they have a shortened time to live, do not have a written end of life plan. This discrepancy leads to difficulties for the family of such individuals. Without a written directive, family members are often reluctant to follow the wishes of the patient.
When my maternal and paternal grandparents were reaching the end of their life my aunts and uncles along with my parents had trouble making the decision to ‘pull the plug.’ My grandparents had rarely discussed their wishes with their children so that when it came time to make that decision everyone was divided. Because of their experience, my parents have already discussed their wishes with me and have written a living will. As a 21 year old I know that my parents do not want to be kept alive on a machine. If and when I have to make that decision regarding my parents’ lives, I can say ‘pull the plug’ without a guilty conscience because I am following their wishes.
If more individuals discussed their end of life wishes the family could be saved the heartache associated with being forced to make that decision for a loved one. Who is responsible for starting the conversation regarding advanced care planning? Is it the role of the physician to ask the patients suffering from a terminal disease their end of life plan? Currently there is a disconnect between patient and physician regarding advanced directives. A large-scale study found that only 25% of physicians knew that their patients had a living will. I believe it is important that we have these conversations with our loved ones so that future healthcare decisions are easier to make. If all patients diagnosed with ALS or similar conditions had a written living will, the end of life transition would be less difficult as those decisions would not need to be made last minute or without the individual’s input. Facing the end of your life is hard for both you and your family, but by developing a living will, you can ensure the end is how you want it to be.
Advanced Care Planning: http://www.acpelsociety.com
Statistics: http://www.pbs.org/wgbh/pages/frontline/facing-death/facts-and-figures/
Images: http://conversationsofalifetime.org/; pinterest.com
Death and Dying: Advanced Care Planning
