It’s my birthday. I’ve decided to be 42 again, since that was a good year, but also a year where I made the biggest mistake of my life. I want a do over.
Having a birthday, and deciding what age I’m going to be, has me thinking about what is coming up. Doctors have a unique perspective on the end of life, because even if we don’t wind up in specialties that deal with death on a daily basis, we have all been present at many deaths during our training, and seen patients and their families deal with it well, and not so well.
First of all, we need to remember that death is not avoidable. It can only be delayed. And the life prior to death can be lived well, in comfort, and with meaning, or it can be pointless and painful. We all know this. I’ve seen patients die very well. My own father fought death for 30 years following his liver transplant, and up until a week before he went into palliative care, he was mentally and emotionally ready for a kidney transplant and absolutely NOT ready to say goodbye. His body had a different agenda. Once he came to terms with that, his last week was good, comfortable, happy, with his family all around. He had the time to say the most important last words, the only ones worth saying, “I love you.” But before that he spent many years in the medical system, and he gained a surprisingly long and wonderful life because of it.
What does “doing everything” mean? It’s terrifying to face death, to think that this is finally it. It’s terrifying for the family too. A tremendous amount of guilt attends a death from illness. Was “everything” done? I think the main problem is not understanding the difference between doing everything that can possibly be done, regardless of the pain or diminishment of life quality, and doing everything that makes sense for that person.
A recent study showed that people undergoing chemo for end stage cancer have a significantly unrealistic and optimistic view of their chances of a cure, when in fact the chemo is only being done to reduce the size of the tumor enough to make the patient more comfortable, or to buy a little time. Doctors know this. But we have such a hard time conveying this to our patients. Why? Part of it is because we can identify with being the patient or the family member. We can put ourselves in their shoes. It makes us uncomfortable. There really is no right way to give such bad news. The other part of it is the natural tendency of humans to use the spectacular defense of denial. Since we have the burden of knowing about our own mortality, we at least have denial to help us out. And the denial of patients, even when they are being told that the treatment will only give them a 5% chance of living for 5 more years, is powerful.
The problem, as shown in the chilling “The Keeper”, is that when we tell doctors to “do everything”, because we don’t want to feel guilty later on, we increase suffering, often for no benefit. Death still comes. But now it comes with pain and suffering. I am not advocating withholding of treatment that can postpone death so that the last few precious drops of life can be tasted. My dad’s story, and so many others, have taught me that the last day of life can be as beautiful as the first. I’m also not advocating a timid approach to the heroic treatments that have saved many lives. My father’s liver transplant is an example of this as well. But it’s important to know what “doing everything” really means, and to be sure that it means the same thing to you as to your doctor.
- Why Doctors Die Differently http://online.wsj.com/article/SB10001424052970203918304577243321242833962.htm
- Palliative care: Helping the dying ‘to live until he dies’ (newsinfo.inquirer.net)
- Why Can’t We Die Like Dudley? http://anyshinything.com/2012/02/24/why-cant-we-die-like-dudley/
- The Keeper http://jordan-inmyhumbleopinion.blogspot.com/2012/11/the-keepers.html?m=1
- Communication is Poor When it Comes to Chemo, but who is to Blame? http://theincidentaleconomist.com/wordpress/communication-is-poor-when-it-comes-to-chemo-but-who-is-to-blame/