Choices in dying

“There used to be a saying that pneumonia was an old man’s best friend,” said David Swetman, a chaplain at Sierra Nevada Memorial Hospital in Grass Valley. “[A quick death] from pneumonia could save people a lot of pain and anguish. Now, surviving pneumonia is commonplace, and you have to help people figure out what their end-of-life goal is.”

For many, that conversation has gone unspoken.

Instead, though the vast majority would prefer to die at home, most terminally sick or elderly patients—three out of four—wind up in a hospital or care home at the end.

They also spend most of their lifetime medical expenses in their last few months of life. In 2008, Medicare paid $50 billion to doctors and hospitals for care during the last two months of a patient’s life.

The costs are prohibitive, consuming about 17 percent of the American economy, an expense that is expected to soar.

With such issues in mind, Swetman and others are working to change the conversation about what constitutes a so-called “good death” or natural death in this medically advanced day and age.

“All of a sudden, at the end of life, people are not certain what they want,” Judy Citko, executive director of the Coalition for Compassionate Care of California in Sacramento, said, because the subject has been culturally taboo. “People need to know end-of-life choices exist.”

Swetman says he encourages such choices in his daily rounds at the hospital as a way of empowering patients who have little power left in their lives. “One way to make end-of-life issues easier to think about is [thinking] about what gives people control,” he explained to SN&R. “As people get closer and closer to death, there are fewer things they can take control of, but death is one.”

Swetman pointed to two recent patients he served. Both patients had amyotrophic lateral sclerosis, or ALS, also known as Lou Gehrig’s disease, a condition that causes the body to lose control of its functions, usually starting at the periphery, such as the fingertips, and moving to the vital organs in the inner core. One of his patients, a man in his 60s, preferred to hang on as long as possible, until he could only move his eyelids, and communicated with eye blinks. The other patient was a woman in her 50s and a mother of teenagers. Not wanting to be a burden to her family, she preferred to go as quickly as possible by removing her ventilator. For Swetman, both deaths, and the level of personal will involved, made for good deaths.

“It is a very individual decision,” Swetman said. “Communication between doctors and patients is key, and establishing a goal of care, asking questions about how much pain you want to suffer and how much of a burden you want to be.”

As elemental as these points are, they still represent a seismic shift in the culture of death, one that moves from the inevitability of dying in certain situations to having a more flexible timeline, one that requires those unspoken conversations about dying.

“We have to see dying as a part of living, and separate from it,” Citko said. She also points out there is an ongoing change in the traditional concept of a doctor and patient relationship. The shift has been underway since this rise of hospice care in the 1970s and palliative care in the mid-1990s.

“Traditionally, doctors have looked at a patient as a disease or as a body parts, rather than the health care of a whole person,” she explained. “Now we are encouraging hospitals to think about the patient after surgery, and ask, ‘What does this mean for this person psychologically? Or spiritually?’”

This approach also aims to reduce the need for costly hospital stays and tests.

“The goal is to get patients where they want to be,” Citko said. “Some people will want to be in the hospital, while others will prefer to be at home surrounded by loved ones and in a comfortable place.”