The following e-mail came from Penn neurologist Leo McCluskey, medical director of the ALS Center at the Penn Comprehensive Neuroscience Center at Pennsylvania Hospital. McCluskey, an expert in amyotrophic lateral sclerosis, or Lou Gehrig’s disease, will be joining us for our live Web chat tomorrow at noon.
I am interested in pursuing a research project in my ALS patients regarding the potential harms of false hope. By that I mean a physician or health-care provider who keeps the fiction alive that the patient is not suffering from ALS but rather from a potentially treatable problem even when the physician knows otherwise. The physician might even subject the patient to treatments (and potential harm) for one of the other “potentially treatable” diseases even when the physician knows that the ALS diagnosis is correct. The reason is to “keep hope alive.” It is in my estimation a form of paternalism. Has anyone that you know of looked into this?
– Leo McCluskey
Dear Dr. McCluskey
Most humans I know are uncomfortable with death and do all they can to avoid it, and doctors are no exception.
I have spoken with several who told me they don’t know how to deliver bad news, that it’s too uncomfortable. Others have told me they ask nurses and social workers to be with them when they can break the painful news and then leave.
And these are the doctors who 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 patients of something precious.
Thirty years ago when I first became a quadriplegic, I 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 while waiting for the cure.
Certainly in the short run hopelessness can be anguish. But as an American Indian 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 onto 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 all I’ve seen, once they stop fighting, look 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 happens only when they give up their battle and rest in the lives that they have.
I don’t want to sound like a Pollyanna. 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. Recalling 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 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 had a good life and was grateful.
His serenity at the end 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. He defined hope as the belief that tomorrow can be better than today. That makes sense because everyone, regardless of ability or disability, is able to find more joy and gratitude each day.