Jan 15, 2014 4 min read

Some of us don’t have a choice where it happens. Some will die unexpectedly, quickly, without the ability to choose where we will spend our last moments on earth.

But for some who know the end is near, there are decisions to be made. Perhaps, most importantly, where they will live as they approach the end of life.

“If you asked most Americans where they would want to die, most would say in their homes. Yet only 25 percent of people have that happen,” said Vickie L. Carolla, director of operations for Amedisys Home Health Care and speaker at Monongahela Valley Hospital’s recent seminar, Ethical Perspectives of Hospice and Palliative Care.

“Hospice is a benefit we need to look into at the end of life,” she said. “So many people don’t know about it.

“At the center of hospice and palliative care is the belief that each of us has the right to die pain-free and with dignity, and that our families will receive the necessary support to allow us to do so,” states The National Hospice and Palliative Care Organization.

The focus of the seminar, attended largely by health care professionals, was to clear up some misconceptions about palliative care and hospice.

The goal of hospice, which was established in 1981 by the Social Security Act and is now a Medicare benefit, is to care for people at the end of life and manage their symptoms, particularly pain. Hospice can be provided anywhere, from a personal residence to a skilled nursing facility. A person is a candidate for the benefit if he or she has a terminal illness with a life expectancy of six months or less, wants to be kept comfortable, does not want to seek aggressive treatment and has a desire to die at home.

Carolla said that hospice in unique in that it employs a multidisciplinary approach to care, including spiritual, physical, emotional and psychosocial support. In addition, certified hospice providers are required to use volunteers to perform a range of services from simply sitting and talking with patients and their families to providing bereavement support after death. In fact, hospice was started by volunteers who would simply sit and talk with patients in the end stage of life.

According to Carolla, patients who receive hospice care early live longer, have a higher quality of life and satisfaction and have fewer hospitalizations.

While the benefit is underutilized, the number of people opting to receive hospice care is growing. The NHPCO reports that in 2011, approximately 45 percent of all deaths in the United States were under the care of a hospice program.

While palliative care began with the hospice movement, it is different in that it is not based on the amount of time a person has to live. Palliative medicine is for patients in all stages of their illness, including those receiving treatment for curable illnesses, those living with chronic diseases and patients who are nearing the end of life. Also unlike hospice, patients can receive aggressive treatment for a disease while receiving palliative care.

Carolla and Dr. Daniel Iracki, Vitas medical director, stressed that while conversations about death may feel uncomfortable, people need to talk to their loved ones about what they want at the end of life. Furthermore, everyone should have an advance directive and living will, spelling out their wishes for care at the end of life, and appoint a medical power of attorney – a person they trust to make health care decisions should they be unable to do so.

Iracki referenced several court cases over the years that have led to a patient’s right to choose not to seek aggressive treatment. Particularly, he spoke of the famous case of Terri Schiavo, who lived in what doctors called a “permanent vegetative state,” until, after more than a decade of legal battles, doctors removed her feeding tube, in part because her husband said she would have not wanted to be kept alive.

When Iracki attended medical school, he said palliative care was not something that was taught, and even now, doctors do not delve into the specialty, even though all patients will eventually die. He said that what is important is to let patients die with dignity.

“At the end of life, there are a lot of problems,” he said. “We have to see the magnificence in the heart of the mess. We have to strive to see the patient with the eyes of the heart.”