I received the following e-mail from Leo McCluskey MD,MBE He is an associate professor of neurology at the University of Pennsylvania and Medical Director of the ALS Association Center at the Penn Comprehensive Neuroscience Center at Pennsylvania Hospital. Dr. McCluskey will be joining us for our chat on Tuesday at noon.
I am interested in pursuing a research project in my ALS patients regarding the potential harm(s) of false hope. By that I particularly mean a physician or health care provider purposefully keeping the hope that the patient is not actually suffering from ALS but rather from a potentially treatable problem even when the physician knows that the person is indeed suffering from ALS. In this scenario the physician might even subject the patient to treatments (and potential harms) for one or more of the other “potentially treatable” even when the physician knows that the diagnosis of ALS correct. The ostensible reason is to “keep hope alive” or “I don’t want to destroy hope”. It is in my estimation this is a particular form of paternalism. Has anyone that you know of looked into this at all?
Dear Dr. McCluskey,
Most humans I know are uncomfortable with death and do whatever they can to avoid it, and doctors are no exception. I have spoken with several who have told me they don't know how to deliver bad news it's too uncomfortable. Others have told me ask nurses are social workers to be with them that they can break the painful news and then leave. And they use are the doctors that know they are uncomfortable. There are many others who are uncomfortable and don't know it, and they are the ones who are most likely to make poor decisions. Of course that is not all doctors and many today are being trained in talking to patients about emotional issues.
But my first reaction to your e-mail was that this denial actually deprives their patients of something precious. 30 years ago when I first became a quadriplegic, I've was fortunate in that no one gave me hope that I would ever walk again. But that wasn't true for some of my fellow patients who were told about promising new research and to "never give up hope". They went home and postponed their lives waiting for the cure. Certainly in the short run hopelessness can be anguish. But as a Native American saying goes: "in hopelessness, we become open channels."
I have treated many patients with terminal illnesses. Understandably their first reaction is to try to clutch on to life seeking whatever hope they can find. But after a while, the battle shifts from preserving life to postponing death. And then something else happens. Almost everyone I've seen once they stop fighting, looks more peaceful as though they have crossed some kind of psychological or spiritual threshold. Many of my patients have begun to reflect back on their lives with gratitude and love. And this only happens when they give up their battle and rest in the lives they have.
I don't want to sound like a Pollyanna and this pattern is certainly not true for everyone. As my father aged, he told me that he didn't want to know if he had a terminal illness, and I respected that. But then as his kidneys and heart started to fail he asked me what was happening. Remembering his earlier request, I asked him if he really wanted to know. When he said he did, I told him that his body was beginning to fail and he wouldn't be around too much longer. We wept together, but a few days later, I asked him to reflect back on his life. This man had a long history of pessimism seeing the glass as half-empty. But now knowing that the end was near, he said that he had a good life and was grateful for what he had. His serenity at the end of his life was a blessing for me and could have never happened if he had hope.So this business of hope and hopelessness can get pretty complicated. The best definition of hope I have ever read came from: "the anatomy of Hope" by Jerome Groopman M.D.. He defined hope as the belief that tomorrow can be better than today. That makes sense because everyone, regardless of ability or disability, has the ability to find more joy and gratitude each day.