If only someone like Dr. Ezekiel Emanuel (more about him later) had been available in the last years of my mother's life, perhaps she would have had an easier, more graceful exit from this world.

My mother passed more than three years ago after battling chronic lymphocytic leukemia (CLL) for about nine years. Like most cancers, there is no known cure for CLL, and so she went into and out of remission between chemotherapy sessions.

The disease and the drugs, like most cancer treatments, proved debilitating after years, wearing down her immune system so that minor colds turned into illnesses that for lasted months. She was extremely depressed and exhausted in her last years. When she died, it was pneumonia that felled her. Her body had nothing left with which to fight.

During a fellowship on cancer research that I received through the National Press Foundation, it struck me: She would've had a better quality of life on her own terms. That realization struck my emotional core like a live current. It released pangs of regret and guilt.

Yet what we had been doing in treating my Mom's terminal illness was what the medical system allowed and encouraged us to do. Medicare reimburses chemotherapy and covers drugs administered in clinics, where she spent hundreds of hours receiving poisons that devastated the rest of her body while keeping the cancer somewhat at bay. The underlying philosophy behind this care was that this was the accepted way to treat something that modern medicine hadn't yet dispatched. It gives you more time. And time buys you hope. Maybe better drugs would come along…maybe a better combination would prove effective…maybe. I think every family facing cancer hears this and hopes beyond hope. No American wants to hear that science can't come to our aid, so we take heroic measures based on slim probabilities of buying a few more months of life.

What really knocked me for a loop was the realization that I didn't recall anyone connected with her care talk to her about palliative or hospice. After treating her with hundreds of thousands of dollars worth of the most toxic drugs, when did her medical team even discuss enhancing her quality of life or frame of mind, which bordered from dismal to suicidal? The closest I think they came to this issue was prescribing anti-depressants, which certainly didn't ease her discomfort, anxiety or mortality concerns. A few weeks before she contracted the pneumonia that killed her, she told my wife and me that she wanted to die. No one wants to hear that from a loved one, but we both knew how depleted she was physically and spiritually. She must've felt that way for years.

Why didn't her medical team at least broach the subject of hospice care instead of urging her into another fruitless round of chemo? I suspect it's because Medicare doesn't really give doctors and nurses any economic incentive to do so and they don't have the training to even start that conversation.

I only recently discovered that despite the growth rate in use of hospice services, the Medicare benefit is not well known, nor is it widely used. In 2009, less than 3 percent of Medicare benefits were spent on hospice care, compared to 13 percent on physicians, according to the Centers for Medicare & Medicaid Services. To be eligible for Medicare hospice care, a patient must be entitled to Medicare Hospital Insurance (Part A) and be certified as having "a terminal illness with a life expectancy of 6 months or less." Once hospice care is approved, treatment is considered "palliative"—improving quality of life until death—as opposed to curative. I wish I had known about this option.

What Needs to Change

The key problem with Medicare's standards of care is that with many diseases such as cancer, no one knows how much time is left. With cancer, some may be riddled with it yet survive for years, while others may get a diagnosis and be dead within months. The disease doesn't give a definitive timeline.

Even if those standards were scrapped, the entire medical culture needs to change. I doubt that most providers even have the skills to discuss the subject of palliative or hospice care with patients, or have the metrics to evaluate quality of life and weigh it with the potential good or harm of further treatment.

Dr. Emanuel suggested in a recent New York Times op-ed piece that providers should be trained in end-of-life counseling and that every hospital should provide palliative care. An oncologist, economist and professor at the University of Pennsylvania, he's among our most insightful thought leaders on health care policy.

He writes, “When I was starting out, I was lucky enough to be able to witness how a great oncologist communicated with patients and their families when it was clear they were going to die, but I received no formal training whatsoever.”

Here's the four-point plan he suggests should be implemented:

  • All doctors and nurses should be trained in how to talk to patients and families about end-of-life care.
  • Physicians should be paid a one-time fee to talk with patients about their preferences for end-of-life care. Even if physicians are well trained in communication, these conversations take time and are emotionally draining. This should be recognized through compensation.
  • Every hospital should be required to have palliative care services available both in the hospital and at the homes of dying patients who are discharged. More than 40 percent of hospitals with more than 50 beds do not have palliative care services.
  • Finally, we need to revise eligibility for hospice care. Right now doctors must certify that patients have six months or less to live and patients must agree to forgo life-sustaining treatments. The decision about whether to put a patient in hospice care should not be based on unreliable predictions about how long she or he has left to live but rather on the needs for specialized care, like morphine infusions.

I'd add one more item to Dr. Emanuel's list, which would not only reintroduce humanistic treatment into end-of-life care, but would probably lower costs in the health care system. The medical profession needs a comprehensive metric that would be a ratio between expected benefits of further treatment and providing hospice or palliative care. Criteria would include mobility, ability to perform activities of daily living, state of mind, well-being, anxiety disorders and physical comfort, among others.  

It would also make sense to integrate hospice care with home care. Before the 20th century, most people died at home. A dear friend of mine, who succumbed to cancer in 2010, chose to die at home among his family members.

In contrast, institutionalized care, whether it's an intensive care unit or a nursing home, robs many people of their dignity in their last hours. These places are designed largely to maintain and preserve life—often at all costs —so they can be very dehumanizing settings.

The health care industry also needs to let go of the cultural imperative that all servicesmust be performed in an institution where patients are monitored, poked and tested 24/7. More education is needed on how to engage families and move professionals into the decision-making processes on whether palliative or hospice care is appropriate.

At the same time that providers are getting trained in these processes, we as a country need to take a fresh look at death and dying and jump-start a national discussion on bio-ethics. At what point do we stop "heroic" treatment for incurable diseases? How can we better approach this taboo subject? How can medical, allied health, mental health care professionals and spiritual leaders find some common ground?

Ultimately, I hope that we will discover and put into place a more humane way of approaching the final days that brings into the conversation everyone from Medicare policymakers to families sitting in anguish in intensive care units. In the words of Georgetown Professor Carol Taylor, a former nun who researches these issues, we need to approach the "gentle journey of (the) sick and dying with competence and compassion."  

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