I predict a resurgence in “death panel” panic thanks to an article first appearing in The New York Times and picked up by The Dallas Morning News. Beginning next year, end-of-life-decision discussions may be covered by Medicare. Without thinking it through, the euphemistic question will arise: “Will the medical community arbitrarily ‘pull the plug’ to cut costs and conserve resources regardless of what the patient and/or the patient’s family wants?”

During my career, I have been involved with many families forced and unprepared to make decisions about a dying relative. Tears, anger, guilt, and regret overwhelm those involved in the process. The time for such discussion and choices is not when death is imminent, but when rationale thought balances conflicting emotions.

If Medicare were to cover the cost of time spent for these discussions, choices bound by reason and compassion as opposed to fear, fatigue, and stress, could be made. As a nurse at the bedside for forty years, I see this as proactive, an activity that advocates self-determination for the patient.

Who should represent medicine in this decision making process? The cardio-thoracic surgical specialist who knows the specifics of the patient’s cardiac problems, who has seen what some believe is the site of the soul, the heart, while the chest is open? The anesthesiologist who does a cursory history by phone to assess the essentials of a national risk scale for patients receiving anesthesia? The nephrologist who tinkers with meds, fluids, and diet to keep the kidneys functioning at acceptable levels? Each specialist focuses on a slice of the human pie. The surgeon is invested in the heart, surgical statistics, and hospital length of stay. The anesthesiologist is like one of the tea cups at Disneyland. He spins through the patient’s life with a brief interface when the patient is awake, administers anesthesia, and then is gone. The nephrologist looks at the BUN, creatinine, and daily weights. Who looks at the total patient? Who looks at, talks to, and delves into the history of the bio-psycho-social being who makes up the whole pie?

I think of my Mom who just lost her extraordinary PCP. He spent almost an hour with her each time she visited. He knew not just her physical history, but her social history. He supported her desire to maintain the highest level of wellness so she could continue to live independently. He asked per permission to pray with her. He LISTENED to her. And when she self-diagnosed an acute myocardial infarction, he personally drove her to the hospital in her car, because she wouldn’t leave it at his office. This physician extended himself in what I perceive as a gesture of love and respect and grace, not just as a doctor dealing with a patient. If my Mom needed someone with whom she could discuss how she wanted to die, I would want it to be with someone who knew how she lived. And that would be her PCP.

Any discussion of end-of-life/death meets several obstacles.

Thanks to technology things considered impossible before have become possible. AIDS transformed from being a death sentence to a chronic disease. Organ transplantation evolved from being a great experiment to a process that extends the life of organ recipients and is limited only by organ availability. Minimally invasive surgeries have allowed procedures to be successfully performed on people who previously would have been turned away because of their co-morbidities. The blessing of technology is the extension of meaningful human life. The curse of exponential growth and change in medicine is two-fold.

First, medical therapy can extend life without factoring in risks of potential outcomes and the quality of the life extended. How often I have seen patients survive perfectly executed surgeries while failing to recover their previous level of functioning. The surgery succeeds; the patient fails and endures an emotionally draining and physically tortuous life.

Second, death is seen as a weakness or a failure. America is a country that evolved through ingenuity, innovation, and hard work. Many people think these qualities and access to health care empower them to elude death. Of course this isn’t possible. Nor is it a failure to succumb to the natural, end result of having lived. Death is the “elephant in the room.” It is something we don’t want to believe happens, especially to those we love, admire, and draw strength from. Quite simply it is much easier to talk about life than about death.

Television has further complicated real understanding of disease and death. Just as Law and Order or CSI has generated an unrealistic expectation of crime-solving and justice to occur within an hour, so House and ER have created a false sense of rapid diagnosis, treatment, and recovery, leaving little room for death and the discussions surrounding it.

Advertising inundates viewers with quick pharmaceutical fixes for everything from depression to fibromyalgia, from diabetes to Crohn’s disease. Bariatric surgery is touted as the be-all-end-all solution for weight control. Just as the drug ads list a plethora of warnings and exceptions, every surgical consent has fine print. Success with bariatric surgery requires a life style change, not just a surgical intervention.

How do families open the necessary discussion about death? From the time I was old enough to participate in adult conversation, my parents discussed quality of life. When my father developed a brain tumor, there was no question in my mind what he would want done, or not done. My courageous mother asserted my Father’s wishes against a medical construct that in the mid-1970s still leaned toward patriarchy. My sister and I fully supported her. We were three of the lucky few who discussed such things before they happened.

When my husband and I prepared wills, we also prepared Living Wills/Advanced Directives. What better time to think about end-of-life as when documenting your history by distributing what you leave behind, no matter how insignificant those things may be? Our daughter became involved as she has Medical Power of Attorney if something happens to both of us together. Hopefully this role opened a discussion between her and her husband. Experience has surprised me when I count the number of patients I have taken care of who don’t have a basic will.

Perhaps when families are together, enjoying the grace engendered by love and connection, when relatives are savoring all that has come before and all that has yet to come, a discussion of how each family member hopes to leave this world can be part of the experience. I don’t find this macabre; it is part of the human experience. I have things I will leave behind and have a hope about how I will be remembered. I want people to remember the love I had for them, how I loved to read and write, how I could never sit still, how I flew with white knuckles and fled an MRI because of my loathing for small spaces, how I loved my cats, attended patients’ funerals, and balked at mastery of the cell phone. I don’t want to be remembered inert, unthinking, in a swamp of my body’s own making. In the warmth of a gathering of friends or family, what better place to share these thoughts, these concerns?

Politicians seeking a photo-op will misrepresent this subject. They will suggest, without hands on experience, that the decision to stop or withdraw extraordinary care equals stopping care. To the contrary, I explain to families that the plan of care merely changes from one of aggressive, often traumatic therapy, to care, support, and comfort. Death may be imminent, but time is not a certainty and death may not be immediate. To the health care team, the caring never stops.

I hope Medicare begins to cover time spent with patients and families discussing these matters. The American Association of Critical Care Nurses has reported that families in crisis situations involving a dying patient need 1:1 care as much as any patient in an acute physical crisis. Addressing these needs in all patients can’t help but improve quality of care for both patients and families. Rather than “pulling the plug,” these discussions will give patients a voice and a choice in the direction of their care. And so it should be.

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