By Don McGillivray
How each person concludes life is critical to everyone. No one wants to suffer or live as a vegetable in a hospital intensive care unit. At some point everyone must decide who must make the decisions on your behalf if you are incapacitated. It is better to begin this conversation at the kitchen table, not in a hospital.
Too many people are dying in ways they wouldn’t choose, and too many of their loved ones are left feeling uncertain, guilty, and excessively bereaved. After all, the American health care system has a fair share of faults and mistakes. It’s time to shift our behavior from not talking about the end of life to providing the needed information to those that will act for us in carrying out our wishes. The conversation project can make these discussions easier so that our loved ones and ourselves are comfortable about expressing and respecting everyone’s concerns.
The Conversation Project helps people to talk about how we want our lives to end. It is a conversation with family or others about what matters to you, not about our troubles. It is a discussion of faith and values about the reality of our mortality that is too important to avoid. The Conversation can happen where people live, work, pray or gather.
The Project is actively engaged with over 250 community organizations and forty healthcare systems in forty-two states. These end of life conversations can make a significant difference in people’s lives. A national survey undertaken in 2013 showed that 90% of individuals want to have these conversations, but only 30% are having them. Similarly, 70% of people say they want to die at home, but in reality, 70% actually die in hospitals or institutions. (Survey of Californians by the California Healthcare Foundation, 2012)
The Project is a nonprofit organization that began in 2010 in collaboration with the Institute for Healthcare Improvement. It was founded by Ellen Goodman, a recovering journalist, in Cambridge, Massachusetts after an unfortunate experience caring for her mother’s passing.
Most people know stories about good deaths and bad deaths among their loved ones and friends. The Project is a public health campaign to help people prepare for death by encouraging people, the clergy, and medical professionals to talk about how people choose to live the last days of life. It works to engage the public, medical practitioners, and the healthcare system to ensure that appropriate and effective end of life communication occurs prior to their need.
The primary tool of the project is The Conversation Starter Kit; a free, downloadable, step-by-step guide that helps individuals and families have The Conversation. The kit is designed as a way to think about and communicate these important decisions, before a medical crisis occurs. Many still think that talking about end-of-life care will be a subject to avoid with your loved ones.
There are approaches and ways to talk about these difficult subjects. Whether you want to discuss the subject with a loved one about their situation or yours it is one of the most important discussions you can have. You and your family must be the experts on your families end-of-life care, not doctors, nurses, or “experts”. The Starter-Kit will be of great help in doing this.
The current method to give family and health-care personnel information about end-of-life care is through a written Living Will, Health Care Directive, or Advance Directive. All accomplish the same function of legally stating ones wishes for end-of-life medical care.
When one has a terminal illness and is incapable of indicating whether to continue life sustaining treatment, or to remove life support systems, others must act for to accomplish this. Therefore the Advance Directive must be written while he or she is clearly and definitively able to express verbally while in sound mind. The conditions regarding one’s final healthcare wishes must expressed of the person’s own free will.
The Conversation is useful as a preliminary step in the process toward the development of a written document and especially for increasing the understanding of everyone involved.
Palliative care is a solution that may be used for patients with serious illnesses. Palliative care increases comfort by lessening pain, controlling symptoms, and lessening stress for the patient and family. Evidence shows that palliative care interventions in an outpatient setting are effective for improving the perceptions of care and decreasing the length of hospitalization.
According to the National Institute of Health, five percent of the most seriously ill Americans account for more than 50 percent of health care spending with most costs incurred in hospital settings during the last year of life. Economists call this a “cure at all cost” attitude. In the next twenty-five years, we will have longer life spans and aging baby boomers are expected to double the number of Americans sixty-five years or older, to about seventy-two million.
Another good resource on this subject is called Death Over Dinner. More than twenty countries and thousands of people have discussed the subject of their future passing over dinner. Many believe that how we die is important and there are ways to ease its challenges with proper foresight. Too many avoid the subject, but much expense and grief could be avoided if we would make it a necessity.
With the help of these information sources, much of the pain and difficulty can be removed from these conversations. It can be an uplifting interactive adventure that gives a family deep engagement, insight, and empowerment.
More information about The Conversation Project and Death Over Dinner can be found on the internet.