By Mark A. Kelley, MD |07/15/16
Most of us make future plans about careers, finances, retirement etc. However, few of us plan for the end of our lives.
Medical science has made great strides in treating complex diseases like cancer, heart failure and diabetes. Nonetheless, for these chronic diseases, complete cures remain the exception, rather than the rule.
If you have helped someone with life-threatening disease, you know the stress involved. As the disease progresses and end of life is near, many difficult issues arise: Is a cure still possible? Will more treatment be helpful? Will the treatment be worth the result? Will the end come soon?
As an intensive care physician, I have seen patients and their families grapple with these dilemmas in “crisis mode”. This happens when a gravely ill patient’s wishes at the end of life were never discussed. Now, with very little background information, the family and physicians must make some decisions to guide the patient through life-threatening challenges.
“The Conversation Project” is addressing this problem. The objective is to facilitate discussion about patient’s goals well before any crisis. The conversation between the patient and his/her family and physician assures that everyone involved knows the patients’ desires.
The Conversation Project describes research showing that patients want this discussion but need help.
1. 90% of people think that talking about end of life care with their loved ones is important—only 27% do.
2. 82% say it is important to put their wishes in writing but only 23 % have done so.
3. If seriously ill, 80% of people would discuss end of life care with their doctor, but only 7% actually do.
The “Conversation Project” has developed tools to facilitate communication about end of life care. Personally, I have found their approach helpful with both my patients and my family. The best time to begin the conversation is when there is no pressure for an immediate decision. Ideally, the patient feels well, and family members and physicians can participate.
The most important part of this conversation is for informed patients to set their objectives for the end of life. Patient preferences vary and can even change depending on circumstances. For example, one third of adults would continue treatment even if their disease were incurable. However, other factors can change that decision. Over 52% of patients with incurable disease would stop treatment if they must depend on a family member for care.
In a third example, some patients would prefer to stop treatment but continue anyway. They do not want their loved ones to remember them as “giving up”. I have found that this dilemma can often be solved by a candid discussion with the patient, physician and family members together. In this session, the doctor discusses the medical facts, and the patient describes his/he true feelings and desires. With everyone hearing the same important information, the family usually rallies in support of the patient’s decisions.
These circumstances can differ and the details are very personal. However, there is only one “best” outcome: that each patient communicates their plans and desires for the end of life. That important action assures that the patient’s wishes are fulfilled and greatly reduces emotional stress for all.
Have you and your family had “The Conversation”? Check out the Project website (http://theconversationproject.org) for some valuable tips.