Q: My family and I have been following with great interest news about former South African President Nelson Mandela. It really divided my family and now I hope you can help us to ease the tension. (When news came that Mandela was on life support), both of my sisters, who are in their late 60s, did not understand why Mandela's family would not just let him go. My husband and I take a different view. We cherish and honor life at any cost and are completely in agreement with holding on to it if possible. This is even more complicated as my mom is in her 90s. She is surprisingly healthy, but, nevertheless, we all worry about her. She has not completed any kind of document stating her preferences about life support, so we just assume as a family what her wishes would be should she get sick. Here is another issue -- my mom has a mild form of dementia and I am worried that talking with her about getting sick may make her very upset. My sisters, however, insist we have the conversation with my mom and soon. Who do you think is right?
A: This is a very loaded set of questions and indeed a very interesting letter. My line of work does often necessitate very personal and challenging discussions about life and death. Having said that, most of what I will share with you should be treated as my personal opinion. As such, it is subjective. It seems that Mandela failed to do one extremely important thing -- he did not leave any written advanced directives clarifying his wishes for type of care and level of care should he get very ill. This is perplexing, but not uncommon. Stephanie's mom does not have that document completed either. Should she make one now?
Here is my point of view. I do not believe that doctors can dictate to patients what to do or what not to do. I know, sadly, that often doctors are too unskilled and too anxious to honestly discuss how sick a person truly is. By focusing on separate organ systems, we de-humanize patients. It is much easier this way. We can tell loved ones that a patient's lungs are better or that his or her circulation is improved. The fact that the person has not gotten out of bed in a month or has not had a meaningful conversation in six weeks is not mentioned.
The research clearly shows two facts. First, families do not know what their loved ones want or do not want. When actual preferences were compared with patients who could participate in the discussion the agreement was about 50 percent. This is a very sad and somewhat surprising result. Second, very few people want to keep going at any cost. There are some who cherish life beyond anything and will pay any price to sustain it but they are a true minority. Most people only want aggressive care IF they have a chance of a meaningful recovery. Most by meaningful mean having mental abilities unchanged. People also do not want to be incapacitated. Many do not want to be living in a nursing home or be a substantial burden to their family. Almost no one wants to suffer. If suffering, especially pain and the inability to interact with loved ones, is put into the equation, the majority of responders prefer to "just go naturally."
This is how we have arrived at the very essence of Stephanie's question and the most difficult part of our conversation. You see, we doctors can prognosticate the likelihood of survival, but this requires effort and studying. Since many physicians do have a true belief that death means defeat and failure, they just do not deal with death at all.
What should Stephanie do? Most people like her mom do want to talk about what they want or do not want done to them when they get gravely ill. Even with a mild memory loss this conversation is possible. The family may ask mom's physician to help. If your family is religious, a spiritual leader such as a priest or a rabbi may be of help as well. The language used should focus on what the person os really afraid of besides, of course, death. Is it suffering or pain? Is it being incapacitated? Separation from family?
I personally encourage all of our readers to do two things. First, please complete your advanced directives in writing. You do not need a lawyer and to pay money to do it. You just need your written document to be notarized. Finally, talk to your family, friends, loved ones what are you afraid of and what do you envision your passing to be like. Stay in control of your life. Do not let doctors or anyone else control it for you.