In an effort to facilitate discussion on the topics of illness and death, the Hospice Foundation of America held its 12th annual “Living with Grief — Ethical Dilemmas at the End of Life” teleconference at CSUN Wednesday.
Moderated by Cokie Roberts, political commentator for ABC, the discussion included topics such as ethics, law, hospice care and assisted suicide.
Broadcasting live via satellite from Washington, D.C., audience members at CSUN watched a group of nine panelists from various medical, educational and social service organizations.
The three-hour conference, co-sponsored by Rachelle Dardeau, regional director for the Alzheimer’s Association of the greater San Fernando Valley, and Sandra Nelson, director of VITAS Innovative Hospice Care, consisted of interviews, discussions about euthanasia, and emotional stories of families who withdrew or withheld care from a dying loved one.
Panelists tackled issues on cultural differences and their influence on ethical choices, strategies to assist bereaved individuals, and dilemmas found in hospice programs. Throughout the teleconference, people from across the nation called in with questions for the panelists.
Katey Lawson described the pain she endured as she fought with medical professionals who, against her will, provided her 2-year-old son Liam with a feeding tube, prolonging his vegetative state and suffering.
“I really lost a lot of trust in our medical community,” Lawson said. “It turned out to be a horrible decision. It gave us seven months with Liam, but not how we wanted.”
Audience members sat silently as they watched footage of a crying Lawson and her mother, Annette O’ Brien, both nurses, describe Liam’s neurological problems and the hardships of having their medical community demand the implementation of a feeding tube for Lawson’s son.
“It was just overwhelming,” Lawson said. “Everyone turned their backs on Liam. There’s no follow-up care once you leave hospitals. It’s like ‘Don’t let the door hit you on the way out.'”
Speakers also touched on how many individuals who make surrogate decisions for loved ones experience guilt and grief afterward. Panelists reprimanded medical institutions for their lack of effort in confronting grief.
“It seems to me the problem is with discharge,” said Bernice Harper, medical care adviser for the Department of Health and Human Services in Washington, D.C. “The issue is continuity of care, and the (medical) system needs to look at itself and take the responsibility.”
Medical professionals were advised to “always be vigilant and to be responsible of patients who hold religious beliefs,” said Richard Fife, Ph.D, who is involved with VITAS Healthcare Corporation. He said it is the responsibility of our ethics committees to provide information to patients.
The panelists disagreed with each other on whether doctors should provide treatment to certain individuals.
“If pain is controlled with high doses of medicine, it could affect respiration and hasten death,” said Bruce Jennings, senior research scholar at the Hastings Center. “If the (doctor’s) intention is to care for the patient and not kill (the person), it is morally justified.”
In an effort to prepare individuals for confronting death issues, and to spare family members stressful surrogate decisions, the panelists stressed the importance of making early decisions, called advancement directives, which inform family members about the person’s wishes before, during and after death.
“(Advancement directives) give (a) voice to a patient when they can’t verbalize,” said Jennings. “It’s what the patient wants.”
However, one of the problems is that many medical institutions fail to refer patients to hospice programs in a timely manner, Fife said.
Panelists acknowledged that the length of patient stays in hospice programs is much shorter than it used to be.
CSUN student and part-time hospice nurse Audrey Tyzzer Lubow said she found the teleconference to be extremely helpful and informative. She said she agreed that doctors should advise patient’s about hospice care sooner.
“Primary-care physicians don’t refer patients in a timely manner, and when hospice steps in, we end up spending time alleviating pain, so we don’t have time to develop trust with the patient,” Tyzzer Lubow said.
Another problem is that people are afraid to face death issues, Tyzzer Lubow said.
Since physicians are trained to treat people, they are going to cure without any mention of hospice care, said Jack Gordon, chair and CEO of the Hospice Foundation of America.
“We don’t talk about hospice care,” Gordon said. “We don’t want to think about it.”
The event provided constructive criticism on various aspects of the medical field, while delving into controversial issues relating to death and dying.
“(Death is) painful,” said Tyzzer Lubow. “It’s scary. We don’t want to talk about life going on without us, and it’s threatening. The teleconference was excellent.”