Imagine yourself lying in a hospital bed. You feel weak and short of breath. The past 24 hours have been a blur of waiting, testing and multiple strange faces entering your room. You are exhausted; not only from lack of sleep over the past 24 hours, but also from several weeks of feeling "not quite right."
It seems every time you doze off, someone else comes in to draw blood, take a chest X-ray or listen to your lungs. Finally, in the morning, a group of "white coats" enter your room. One of them informs you that tests have revealed a mass on your lungs. They suspect lung cancer but further testing will be needed.
As you sit in your bed wearing this revealing hospital gown, your head starts to spin. You hear no words beyond "cancer."
You wish your significant other was present to listen and ask questions to these people who seem to be towering over you. You realize they are still talking to you, and it seems they are waiting for something.
Oh, yes. They want to listen to your lungs, again. You lean forward and inhale deeply. When you look up and ask if you are going to die several avoid eye contact with you, then one utters a hopeful cliché. Before you know it, they are gone and you are left alone with a million unanswered questions.
Relaying Bad News
Unfortunately, in my practice as a registered nurse, this scenario has become all too familiar to me. I have learned to field questions from my patients and families as they grapple with difficult diagnoses.
As I continue my education and take classes preparing me to become a nurse practitioner, I wonder how I will handle the task of relaying terminal diagnoses. I do not feel I have been adequately prepared in my education as an RN or in my continued training toward an CRNP to handle these difficult conversations.
I firmly believe we fail to educate our healthcare professionals in matters of death and dying. In the U.S. the major causes of death are chronic illnesses, where people often experience a slow decline in functioning before death. With adequate guidance and anticipation, patients and their families can use this time to prepare and plan for death.
The location where most deaths occur has also changed. Most people die in institutions rather than their homes, further increasing the level of discomfort and unfamiliarity the average citizen has with the dying process.
As healthcare providers, we should be able to candidly discuss diagnosis and life expectancy as well as planning for adverse events with the same level of ease in which we discuss treatment options.
Too often healthcare providers are just as uncomfortable discussing matters of death as the population they have pledged to serve. While our primary role is to diagnosis and treat, not all illnesses can be cured. As the old adage says, "There are only two certainties in life - death and taxes."
The best time to address end-of-life issues with a patient facing a terminal illness is at diagnosis. When we provide the facts from the beginning it can help our patients and family members to discuss their wishes and plan for their future.
Too often this does not happen. As humans we want to focus on the positive. So we discuss treatment options and best-case scenarios and painting falsely sunny pictures that leave families confused and surprised by the suddenness of death.
Working as an RN in an ICU, I have heard many times staff candidly discussing a patient's poor prognosis with each other only to speak in vague and confusing terms to the family.
It is not realistic, however, to expect providers to develop this skill of discussing difficult matter on their own.
Instead, I believe we need formal training both in the prognostication of illness and in communicating with patients and family members about decisions and expectations around the end of life.
There is no better time to discuss these matters than when you are healthy. Yet how many people have heard of living wills, or have had a serious conversation with their loved ones about what treatments they would want to prolong life, and which they would refuse?
This is not an easy conversation to initiate, which is why it is up to us as healthcare professionals to be trained to start the conversation.
Formal Training Needed
Most medical and nursing schools do not provide enough education on end-of-life issues.
But how do we expect patients to make difficult decisions when we are not comfortable talking about them?
By integrating academic learning with clinical experience we could improve the skill set of our healthcare providers. We could begin by making students fill out their own living will to start the conversation about what treatments we categorize as life sustaining.
In the classroom we could educate about end-of-life concerns and our role as clinicians in managing symptoms. In assessment classes we could practice conveying terminal diagnoses. We could then mandate a minimum of clinical hours take place within a palliative care or hospice setting.
For those that argue that their practice will never deal with the acutely ill or actively dying, I would remind them that dying is a process. At some point in every practice we will encounter a patient who has been touched by death. Whether they have just been diagnosed with a terminal illness, are actively dying or have just experienced the lost of a loved one these are all facets of the death experience.
It is not enough to be able to say the words. We need to train providers in the language of death. We need to be comfortable enough to use direct clear language. To recognize that what we say and what patients and families hear may be perceived very differently.
A Better Way
Imagine once again you are that patient lying in that hospital bed.
Yet this time one or two healthcare professionals knock and then enter your room. They pull up a chair and ask if you have any family in the waiting area. They inform you of their clinical findings and then pause, giving you time to process the information.
They patiently answer your questions, looking you in the eye. When you ask about the chances of survival they give you the facts. While offering promise, they also address the reality that this could be a terminal illness and you may want to consider that as treatment options are addressed.
Before they leave, they call your spouse and reiterate the information. They leave their contact information in case you have questions and they promise to return later in the day to follow up. The differences are subtle, but to a patient they can be astronomical. We cannot rely on experience and empathy to provide adequate communication skills.
The one certainty in life is death, and as stewards of health we need to able to talk about the full spectrum of health and disease - including dying. By increasing our comfort level through formal academic training, we can break the stigma of silence attached to this issue.
Adeline Duffy, RN, is an MSN FHNP student at the University of Pennsylvania School of Nursing in Philadelphia.