On Letting Go

There was a great essay in The New Yorker recently about hospice care and terminal illness.
The essay was titled Letting Go, By Atul Gawande an American doctor and writer. The essay is worth reading, but in summary it followed the story of a young, soon-to-be-mother, named Sara and her vicious battle with lung cancer. Gawande recalls his many experiences dealing with patients like Sara... patients at the end of their life and he shared what he has learned and seen first hand being a surgeon. It was an incredibly informative and honest article.

I even learned something new... that atropine helps clear up secretions. I've only used it when my patient is seriously bradycardic. You learn something everyday... even in the most unexpected places. Thanks New Yorker!

Death and dying are difficult topics in health care. I think most of us would say that in one way or another we feel ill equipped to deal with end-of-life care properly. A sentiment that Gawande shares himself....

"You’d think doctors would be well equipped to navigate the shoals here, but at least two things get in the way. First, our own views may be unrealistic. A study led by the Harvard researcher Nicholas Christakis asked the doctors of almost five hundred terminally ill patients to estimate how long they thought their patient would survive, and then followed the patients. Sixty-three percent of doctors overestimated survival time. Just seventeen percent underestimated it. The average estimate was five hundred and thirty percent too high. And, the better the doctors knew their patients, the more likely they were to err.

Second, we often avoid voicing even these sentiments. Studies find that although doctors usually tell patients when a cancer is not curable, most are reluctant to give a specific prognosis, even when pressed. More than forty percent of oncologists report offering treatments that they believe are unlikely to work. In an era in which the relationship between patient and doctor is increasingly miscast in retail terms—“the customer is always right”—doctors are especially hesitant to trample on a patient’s expectations. You worry far more about being overly pessimistic than you do about being overly optimistic. And talking about dying is enormously fraught. When you have a patient like Sara Monopoli, the last thing you want to do is grapple with the truth. I know, because Marcoux wasn’t the only one avoiding that conversation with her. I was, too."

This has always been something that has frustrated me when it comes to dealing with medicine outside of my daily job. I've had multiple friends and family members that have had diagnoses of cancer or other forms of poor-outcome diseases. My own mother has recently been faced with a probable diagnosis of breast cancer...
When it comes down to the nitty gritty... the actual prognosis... I rarely find that a straight answer is given. Often times the doctors I have dealt with "beat around the bush" and do err on the side of optimism. I think partially because of liability issues... telling someone that the outlook is grim before you really, really know is not very wise... but also because no one wants to be the bearer of bad news. There is always, always hope... right?

But at what point are we actually harming rather than helping? The article talks about patient outcomes... with hospice care and without... and also with hospice care early in the game vs. right at the very end of the patient's life. The statistics were surprising... most patients lived longer while on hospice care and most patients seemed to fair better than when they decided to have every medical intervention to prolong life (vs. making life comfortable right here... right now, which is what the goal of hospice is).

"We imagine that we can wait until the doctors tell us that there is nothing more they can do. But rarely is there nothing more that doctors can do. They can give toxic drugs of unknown efficacy, operate to try to remove part of the tumor, put in a feeding tube if a person can’t eat: there’s always something."

I've seen it first hand... those families that just can't seem to let go despite a very, very poor prognosis... the ones that would rather see their loved ones slowly waste away on every medicaiton known to man... on a ventilator with lines coming out of every place possible... skin so edematous and fragile that they weep liters of fluid out daily because their body just can't take it anymore... its not pretty... it's painful to watch and to be honest I wonder if this is really what the patient wants. It's rare that we have a road map to guide us... most families don't talk about these things... and when they do... sadly, often times the wishes of the patient are ignored or at the very least the lines are blurred... and when to intervene vs. when to take a step back... well, who knows?
There were two questions in the essay that Dr. Susan Block, a palliative-care specialist posed to her father when he was faced with a surgery that could possibly leave him paralyzed or dead... I think they are two questions that all of us should ask ourselves and our loved ones...

"How much are you willing to go through to be alive? What level of being alive is tolerable for you?"

Her father replied, "Well, if I’m able to eat chocolate ice cream and watch football on TV, then I’m willing to stay alive. I’m willing to go through a lot of pain if I have a shot at that."

That answer made all the difference for Block when it came time to make some tough decisions for her father and she was sure glad she had asked him those questions the night before his surgery.

At the end of the day, here is what I have learned in my short time being an ICU nurse...

End-of-life issues are incredibly difficult to discuss and are even harder to face first hand... but if I could leave you with anything I would say: Dont wait...

 Don't wait until you or your loved ones don't have a voice... don't wait until you are faced with a crisis and you are bombarded with fear and stress and pain... don't wait until it's too late to have these discussions. It is just too important to simply put off, because really... you never know what can happen... life can change in an instant and whether you want every possible intervention done to keep you alive or you want to live the last part of your life with comfort in mind... what could be more important than having you or your loved one's final wishes being carried out in the way you know they wanted?

Please... don't wait...

For those in the US: resources on living wills and advanced directives