A primer on how to prepare for—and what to expect during—the death of a loved one
In her decades-long nursing career, Cathy Gallentine has witnessed countless births and countless deaths, a breadth of experience that has helped her develop a unique perspective on life’s book-ending events. In a nutshell, she feels that life ends much the way it begins.
“People die the same way babies are born; it’s all part of the same process,” said Gallentine, hospice outreach coordinator for Enloe Medical Center. “Some babies slip into this world as easy as can be, and some come kicking and screaming and fighting the whole way in. It’s the same at the end of life. Some people slip away gently, but it’s not always that way.”
Gallentine, whose duties include providing end-of-life education to families and caregivers of the dying, said that analogy often helps give people a general idea of what to expect when a loved one is passing.
“Information and options are the key to end-of-life care,” Gallentine said. That sentiment was reiterated by other medical professionals the CN&R spoke to about their personal experiences attending to people as they take the final steps of life’s journey, as well as how to best prepare for the inevitable. They also emphasized the importance of early communication and preparation.
“We tend to avoid discussing the topic,” said Melissa Hormann, a nurse of 17 years who has worked at Enloe and Oroville Hospital and now teaches nursing students at Chico State. She’s also helped friends, family and select others through the process, and—in line with Gallentine’s analogy—calls herself “a midwife on the other end of the spectrum.”
“They don’t know what the person wants, so family members often make every effort to save the life of a dying relative … emergency rooms and ICUs, rehydration, tests, scans, antibiotics. They make a heroic effort, but in many cases it just prolongs the pain, as the physiology of death has to start all over again.”
Dr. Hyung “Danny” An, medical director at Feather River Hospice (until recently known as Paradise Hospice), encourages people to document their end-of-life plans. While a lot of folks are familiar with an advance directive—a legal document indicating which life-saving medical procedures a person wants if he or she is unable to make decisions due to injury or infirmary—he noted it’s also essential to prepare a Physician Orders for Life-Sustaining Treatment (POLST).
“The POLST deals with what an advance directive usually does, which is the decision to resuscitate a person or not, but it also addresses other things,” he said. “That includes what level of treatment a person wants, like comfort care [measures to make a patient comfortable but not extend life], selective care—which may include some life-saving efforts—or full treatment. It also addresses whether or not a person wants artificial nutrition [a feeding tube].
Hospice care, as Gallentine summarized, addresses “the physical, psychological, emotional and spiritual needs” of people facing the end of life. In hospice, no attempts are made to “cure” people, but instead to address their symptoms to ensure their comfort.
“Some people get scared when they hear ‘hospice,’ but we like to tell them it’s not about giving up,” she said. “It’s quality instead of quantity. We don’t do anything to hasten death, but we don’t take extraordinary measures to prevent it.”
Butte County’s three major agencies that provide hospice care—Enloe, Feather River and Butte Home Health & Hospice—use integrated teams of social workers, medical personnel, religious and spiritual advisers, bereavement counselors and various therapists and volunteers to provide wrap-around care.
The six-bed Feather River Hospice House, in Paradise, is the county’s sole full-service hospice facility. Most hospice care locally is provided on an outpatient basis in patients’ homes and Sandy Galka, director of the Paradise facility, said the agencies often work together and overlap to provide the best possible care.
Hormann, the self-described death midwife, advocates for cutting out the medical establishment as much as possible: “I think people are realizing there’s a more economical, effective and personal way to care for the people they love,” she said. “I have nothing against hospitals, but I don’t want to die in one.”
Hormann and Gallentine offered some details about what to expect when a person’s passing is imminent. Interviewed separately, they touched on many of the same physiological symptoms, as well as some details that retain a touch of mystery.
Gallentine said people often withdraw within themselves as they near their final days. Mobility decreases and—if a person is still walking—falls and injuries are common. Pain can increase or decrease and can be controlled by medication; however, that can lead to loss of responsiveness or communication, so family members often have to make a choice.
“A lot of people feel guilty thinking that the last dose of a medication may have been fatal, but it’s important to realize that’s not the case, and that death is due to their medical condition,” Gallentine said.
A dying person’s intake—of air, water and food—generally lessens. Gallentine noted throat and air passages weaken or swell to the point a person has trouble swallowing or breathing. This can lead lead to a host of issues including aspiration and dehydration, which is part of the normal process. Decreased intake can also lead to rising body temperature, which some people mistake for infection or illness, but which she compared to an overheating automobile.
Returning to her birth analogy, Gallentine said death can appear peaceful or as a struggle, and can happen at a moment’s notice or after several days: “People often ask us, ‘How long?’” she said. “We can tell people approximately what we know based on symptoms we see, but we also have to tell them, ‘This isn’t for us to call.’”
Both women noted a few commonplace occurrences that may seem strange, even supernatural, to the uninitiated. For one, sometimes a person will linger until some task is accomplished, or until particular family members have spoken to them, even though he or she may be long unresponsive and seemingly unaware. Hearing is believed to be the last sense to go, and end-of-life workers encourage talking to and making peace with loved ones.
Also, the dying sometimes seemingly choose their own moment of departure: “I’ve seen people linger for longer than it seems possible, and then pass directly after a relative arrives from another country to say goodbye,” Hormann said.
“Families sometimes do vigils and will be there all the time,” Gallentine said. “They may feel like they don’t want the person to be alone, so someone is always there. That can happen for days, and then the moment everyone steps away for even a few seconds, that person will die.”
Finally, Gallentine said its common for dying people to see—and even talk to—their own departed loved ones.
“Some people say that’s because of medication, or a part of the death process,” she said. “But people who’ve had near-death experiences often report similar things. We accept it as a common sign that the end is near. They’re seeing something; to them it’s there.
“We just don’t know, and we don’t question it.”