As Sister of St. Joseph Maria Kellner prays quietly at the bedside of a dying sister, she watches for signs that God is calling her sister home.
She looks for shallow breathing and a change of color in the face. She notes any flicker of discomfort in a nonverbal sister’s expression that can alert her to the sister’s need. And she is there to reassure and to calm the sister with kind words and a favorite hymn in case of fretting over an issue left unresolved.
"We just let them know God loves them, and he is a merciful God, and they don’t have to be afraid," said Sister Kellner, 79.
Sister Kellner treasures the last moments spent with her sisters.
"The moment they are dying is when heaven and Earth are closest together," she said. "They leave Earth, and God takes over. It’s a very sacred moment — the moment of death. And I’ve been privileged to be there for many of them."
Thanks to widespread use of advance-care directives among the sisters, Sister Kellner said most are able to ensure that they spend their last days in the Sisters of St. Joseph motherhouse infirmary in Pittsford, surrounded by the congregation and family members, rather than in a hospital setting.
Death in the motherhouse’s skilled-nursing facility exemplifies the peaceful end pursued for a decade by a communitywide health-care initiative.
A regional group of health-care representatives set out 10 years ago to increase the usage of advanced-care plans among the public. That group also pioneered the statewide use of a new form called Medical Orders for Life-Sustaining Treatment (MOLST), which allows terminally ill patients with life spans of one year or less to spell out their wishes. Use of the form was piloted in Monroe and Onondaga counties before being accepted statewide in 2008.
Also in 2008, the End of Life Survey of Upstate New Yorkers conducted by Excellus BlueCross BlueShield found that 88 percent of respondents felt it was very or fairly important to have proxies who could make medical decisions on their behalf if they had irreversible terminal conditions and couldn’t make medical decisions on their own.
Yet only 42 percent indicated they had designated health-care proxies through a simple health-care proxy form. That form allows another person to assume the decision-making responsibility if an individual becomes incapacitated. Only 26 percent of survey respondents indicated that they had living wills, which enable people to state their wishes about medical care in case of incapacitation.
Health-care proxy forms and living wills are not recognized by emergency medical personnel outside of health-care facilities and do not take effect unless people lose the capacity to make their own decisions. That’s why local advocates developed the MOLST form, which does not have these limitations.
"(Providers) recognized a need for people to articulate their wishes beyond ‘Do you want to be resuscitated or not?’" said Jann Armantrout, life-issues coordinator for the Diocese of Rochester.
A MOLST form is completed by a physician who lists patient preferences on such questions as future hospitalization and transfer and whether to use intubation and mechanical ventilation, artificial hydration and nutrition, antibiotics, and cardiopulmonary resuscitation (CPR) to prevent death. Patients are able to choose from several options, and the form includes descriptions of each.
"In a day and age of hard choices being made in the delivery of medical services, it’s a very good form when used appropriately," Armantrout said.
Yet as a binding medical form, the MOLST must be kept updated as a person’s wishes and medical conditions change, Armantrout pointed out. That is why she recommends that the MOLST form be reserved for those who are near the end of life.
Dr. Patricia A. Bomba, a geriatric and internal-medicine specialist who is one of MOLST’s developers and advocates, said the form should be one part of an entire continuum of advanced-care planning that includes health-care proxies, living wills and organ-donation cards.
"It’s a continual process," Bomba said. "It’s not one that stops."
Bomba spoke about the MOLST form during a talk with Catholic health-care providers Sept. 22 at St. Bernard’s School of Theology and Ministry in Pittsford. To get started on advanced-care planning, she said one needs to decide what goals one wants to achieve near the end of life, whether it’s attending a wedding or enjoying home-cooked food with family.
"It’s not about restricting care; it’s about personal care," said Bomba, a member of Pittsford’s Church of the Transfiguration who currently serves as vice president and medical director for Excellus/Blue Choice. "It’s all about values, beliefs and goals for care."
She noted that conversations about the end of life are easier when they take place on a regular basis. She said her family, for instance, talks about advanced care when they are all gathered during Thanksgiving. During the emotional turmoil of a health crisis, it can be difficult to make care decisions, she said.
"(In that situation) we are not thinking with our intellect; we are thinking with our emotions," Bomba said.
Additionally, people need to consider through conversations with doctors the ramifications of advanced-care decisions, noted Betty Mullin-DiProsa, president and CEO of St. Ann’s Community in Rochester.
One example would be whether CPR should be performed on an elderly person, she said, noting that resuscitation is automatically attempted unless a "do not resuscitate" order is in effect for the person.
"They might be able to be saved, but at what quality of life?" Mullin-DiProsa said. "People need to understand what happens when they have CPR and intubate someone. Old, fragile bones break."
Such aggressive treatment often is the norm in health-care settings unless a patient or proxy expresses otherwise. Oftentimes, the exclusive focus on a cure in a hospital setting may mean that end-of-life care is given only in the final few days of life, rather than weeks or months beforehand, said Dianne Kandt, a registered nurse who spent 20 years working in an intensive care unit.
Additionally, those who receive aggressive treatment and later are transferred to a comfort-care home or hospice setting often arrive sicker and have shorter stays than if they decided to forgo aggressive treatment, said Kandt, who recently became director of Aurora House, a Spencerport home for the dying that welcomed its first resident Sept. 22. Such residents have little time to experience the spiritual, social and mental preparation for death in which comfort-care homes specialize, she said.
She said a shared aim of advanced-care planning advocates and comfort-care home operators is giving people better quality of life at the end of their lives.
"We never lose hope, but we change the focus," Kandt said. "The hope is for something that’s dignified and peaceful and comfortable."