The Importance of Family Communication on End of Life Decisions
By: Leisa A. Bailey, Ph.D.
Family communication can be sensitive on many issues. However, some issues are especially difficult and tend to be avoided. One of these difficult conversations involves an open discussion of wishes regarding end of life care.
While it is often difficult to speak openly about death and dying, it can be even more uncomfortable to have to make end of life decisions for a loved one when these sensitive issues have not be discussed. The reality is that the majority of people will not die suddenly but rather as a result of ongoing illness where there may be decisions made about care and treatment.
Without a family knowing the beliefs, values and wishes of a loved one, they are left to guess – or even worse – fight it out. If the time comes when the person who is being cared for can no longer speak for himself, family members who know their loved one’s wishes are spared the guilt and anxiety of trying to make difficult life-support decisions without knowing what their loved one wants.
Most families find that bringing up the topic is the hardest part. Once everyone gets past the initial discomfort, many find themselves relieved to have the issues out into the open. Sometimes it helps to open the conversation by acknowledging the awkwardness: “I have something on my mind that is really uncomfortable to talk about, but I feel we need to. I want to know your wishes for medical care if you get to the point where you can’t express yourself.”
As people live longer with chronic illnesses, and as life-prolonging interventions become routine, death frequently involves a decision to forgo or limit care. Family members may have different opinions about specific end of life decisions. The time to make decisions about end of life care preferences known is before illness occurs. This helps prevent future conflict or crisis decision-making. It is critical that families understand and support an advance directive when it has been written; and respect and abide by the person’s wishes.
By communicating wishes to others, individual medical preferences can be articulated:
“Life is sacred. I want all measures to be taken to keep me alive until I die naturally.”
“I want treatments for specific issues such as infections or injuries but I do not want any extraordinary measures taken to prolong my life.”
“Do whatever medically is necessary for my comfort and to ease pain, but do not prolong my life past the point where there is quality of life.”
Additionally, an advance directive can state whether specific medical interventions, such as a respirator, feeding and hydration tubes, CPR, surgery, antibiotic medication, and blood transfusions are desired. Decisions about organ and tissue donation can be expressed. In short, an advance directive allows input on decisions, even at the end when the ability to communicate clearly may be compromised or lost.
The ultimate goal of an advance directive is to respect an individual’s values and preferences. Although 75% of Americans say they are in favor of advance directives, only 30-35% actually writes one. Some appreciate the value of advance directives, but they see this need only with the aged, or the terminally ill. However, accidents happen all the time, and those who may have to care for you would likely appreciate having a directive to help them make decisions on your behalf.
This is a difficult but important family discussion. Understanding the wishes of those closest to you and having them understand your wishes is valuable as it allows each to make choices and removes the responsibility for these personal decisions from others.
Dr. Bailey is a Licensed Clinical Psychologist with a private practice in Marietta. You can learn more about her by visiting: www.marietta-psychologist.com. You may reach her at LeisaB@marietta-psychologist.com.