Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, End-Of-Life Care, Having a Voice in Healthcare, living with chronic illness, Living with Illness

Crucial Conversations and Our Greatest Taboo

We’re a verbal culture and we like to talk.  People make their entire living simply by talking and yet when it comes to some crucial conversations we stay so far away that we think we’ll live forever. 

Patterson, et.al. wrote a book called “Crucial Conversations” for the business world.  It spoke to the corporate world about how to have important and often awkward or uncomfortable conversations with employees about performance and other issues.  It’s amazing that the medical community hasn’t come up with its own version of this book because most doctors, even oncologists (who deal with more death than most other specialties other than possibly emergency/trauma medicine) won’t or don’t talk to patients about end-of-life care.

There was an article on Comcast this week citing new recommendations for the cancer community from the American Society of Clinical Oncology (ASCO).  The ASCO recommendations are for doctors to have those crucial conversations before the person is rolled into an emergency room or they are on life support.  Too often we’re finding that patients aren’t even aware that comfort care/hospice is available and suffer needlessly as does their caregivers. 

I think the article puts it beautifully about the capacity of you, the patient, they say, “Everybody wants a good death but not a moment too soon, but they don’t have the language to ask for it.”  I understand that there are too apologies that doctors have to make that is not comfortable.  The first is at the time of diagnosis when they say, “I’m sorry to tell you, but…” and the other is “I’m sorry to say that the treatments aren’t working and there are no clinical trials available, so it’s time to talk about end-of-life care.” 

The statistics given by ASCO says that “40 percent of advanced cancer patients have what it calls a ‘realistic conversation’ with their doctors about what to expect and their choices of care”.  The frightening part of that statistic is what follows next, “The consequences: Patients increasingly are receiving aggressive chemotherapy in the last two weeks of life.” 

The ramifications of that last sentence are that at the end-of-life instead of being comfortable, they are dealing with side effects from chemotherapy and not able to live life unencumbered from machines and hospitals.  No one wants to die but it is inevitable.  Why wouldn’t you want to be comfortable, in the surroundings you desire, and with people who love you the most. 

This is the hardest part, you, the patient, may have to be the one to bring up end-of-life issues with your doctor (no matter your diagnosis).  You may have to be the one who has the strength and the courage to approach your doctor and have this “crucial conversation”.  You may have to be the one who assures the doctor that it’s appropriate and okay to discuss end-of-life care.  You get to be the physician’s coach on end-of-life issues pertaining to you…after all who better to do this job.

I know it’s scary, but if you need some support or have questions about end-of-life care or how to speak with you medical provider you can e-mail me at greg@survivingstrong.com.  Don’t leave your end-of-life care in the hands of another person.  Empower yourself to make these decisions!

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