An important part of Barbara Bush's legacy will be inspiring families to talk about end-of-life decisions, say experts in palliative and hospice care.
The former first lady died at age 92, after announcing two days earlier that she would focus on "comfort care" for managing the symptoms of congestive heart failure and chronic obstructive pulmonary disease.
Advocates for end-of-life planning praised the family's decision to go public with Bush's preferences for coping with terminal illness.
"She didn't give up. She went through the dying part of her life on her own terms, and for that I applaud her," said Tracy Gomillion, 34, who hosts monthly Death Cafe meetings in St. Louis to discuss end-of-life issues.
Gomillion also said she hopes the Bush family's unified message will encourage other families to document their preferences to help avoid conflict and allay fears that their wishes won't be carried out.
There are few other examples of prominent families promoting hospice care, especially in the U.S. where costly treatments and aggressive efforts to prolong life have come to be expected. By making the decision not to pursue everything medically possible, the Bush family has shown it can be a loving and dignified choice, said Dr. Riffat Imdad, medical director of hospice at St. Anthony's/Mercy.
"People feel an obligation to do all they can, but it's not always good for the patient. They end up in the hospital again and again and the quality of life is not there," Imdad said.
Still, the difficult decisions families must make can lead to guilt and a reluctance to let go.
Tina Markwardt of St. Louis County was initially defiant when her sister, Andrea Kern, decided against further treatment for non-Hodgkin lymphoma this year.
"It was hard to accept, but I know she made the right decision," Markwardt said of Kern, who died April 8 at age 71. "Prolonging medical care a lot of times translates into suffering."
Kern stayed at St. Anthony's de Greeff Hospice House in South County for two and a half weeks before she died.
"As best as they were able to manage her discomfort they certainly did," Markwardt said. "She was very religious and she would always say, 'Have you seen any angels outside yet?' As I said to the staff as we were leaving, they are the angels."
Hospice care, or "comfort care," is aimed at improving the quality of life for patients whose life expectancy is less than six months. It can involve treatments to control symptoms including pain, nausea or shortness of breath. Palliative care also focuses on quality of life for patients and their loved ones, but can be offered at any time along with medical treatments for a chronic condition.
The goal is to treat not just the disease, but the whole person, including fatigue, loss of appetite or depression.
The majority of people who choose hospice receive care in their homes from medical professionals, volunteers and if desired, chaplains. Hospice care is more cost effective and leads to higher satisfaction among families compared to hospital intensive care, said Dr. Patrick White, chief medical officer for BJC Hospice.
White remembers making house calls for hospice care with his father, a pulmonologist, as a child.
"Even when he couldn't cure patients, he would take the time to make their cough a little easier or help them breathe a little easier," White said. "It was so helpful to families. While there's almost always something medically we can do, it may have no real benefit for the patient and can have side effects that take away any good time that is left."
Terri Leahey of St. Peters said she was worried that her mother, Charlene Werntz, would be overmedicated and semiconscious when she started hospice care last year following a stroke. Instead, the hospice staff talked and laughed with them during their visits and helped Werntz, 90, create a memory book from her life stories, Leahey said.
"They're like family now," Leahey said about the BJC Hospice nurses, social workers and chaplain who visit their St. Peters home a few times a week. "They're just so concerned to make her life fulfilling, and they help me through some of the rough spots. They made it so she can stay home and be happy, not just waiting for the end."
