October 18, 2017
In the Aftermath of Disasters: Resources for Spiritual Care PlainViews Staff
Who Decides to "Pull the Plug" and What is the Chaplain's Responsibility (September 17, 2014)
(Editor’s Note: This article was originally published on September 16, 2014)
“The misunderstanding around what brain death is and is not is the source of some of the most guilt stricken grief I have witnessed,” said the Rev. Ronald Oliver, System Vice President of Mission and Outreach at Norton HealthCare in Louisville, Kentucky, who believes chaplains—especially those working in emergency departments and intensive care units--have a role and a responsibility” in an issue that involves science and emotion, culture and religion. Very few families understand how a person can be dead if they are still breathing on life support. In their minds, it’s a bad coma; and people have been known to come out of a coma. “They don’t get it,” Oliver said. “Some equate removing life support or signing a DNR as murder.” He recalled, “There has only been one, yes one, parent whose child was declared brain dead who could, months after the death, accurately reflect back to me what brain death meant.”
Brain dead is the same as dead. While many believe that death does not happen until the heart stops beating and the lungs stop breathing, these functions can be maintained by machines, but the brain will not be able to do that once the machines are turned off. A recent interview on WebMD with critical care specialist Isaac Tawil, MD of the University of New Mexico School of Medicine and bioethicist Arthur Caplain, PhD, director of the division of medical ethics at NYU Langone Medical Center, focused on the confusion about the term. When asked why keep someone on life support if they are already dead, Caplan said they often do it to give the family or “out of town relatives time to come and say goodbye. It also allows them to decide if the patient’s organs can be donated.” Both men prefer not to use the term “life support” because it is confusing. Tawil said he uses the term “organ support.” When a patient is on life support, the loved ones hear ‘kind of dead’ or ‘sort of dead,’ but they don’t hear dead. With a coma, sometimes called a persistent vegetative state, the brain is still functioning but only for the non-cognitive functions. It is a profound or deep state of unconsciousness, according to National Institutes of Health. While in a coma a person has lost the ability to think or be aware of surroundings, but is not brain dead.
There have been high profile cases in the news of families, hospitals, and state laws coming into conflict over how death is actually defined. In Fort Worth, Texas, a young pregnant woman suffered a pulmonary embolism and was declared brain dead. Her family did not want her kept on life support, but because she was pregnant, state law prohibited the hospital from removing life support. If they did not keep the heart beating and allow the fetus to live, it would be considered abortion, which is illegal there. Last January a 13-year-old girl in Oakland, California, was declared brain dead after a tonsillectomy but her family insisted she was not dead as long as her heart was beating. They took the case to court and a judge ruled that the family could remove her from the hospital, but the mother would be responsible for what happened to her. The hospital said they would not release the girl while attached to the life support, but a hospice in New Jersey offered to take her.
“Just two weeks ago,” Oliver said, “in Louisville, a child was declared brain dead and the mother went to court to block removal of life support. Her clergy person served as her “expert” witness, saying that even if the child is brain dead, we can still hope for a miracle.
In stark contrast, Lee Erickson, a Russian Orthodox Hierodeacon entering ACPE supervisory training this fall, recalled a case where a family agreed to let their loved one go, but the hospital staff could not declare him brain dead because while there was no blood profusion through his brain, a spike in his sodium levels meant the protocol for declaring him brain dead was delayed. Lee, then a chaplain at Mercy Hospital in Folsom California, a suburb of Sacramento, said the young man’s family and friends were camped out in the hospital for three days before they could finally say he was dead. The young man had wanted to be an organ donor and his family supported his desire.
A recent article in The New York Times reported on how families in France are beginning to challenge doctors on end-of-life decisions. Doctors in France have long held what might seem to us unthinkable discretion to make end-of-life choices for people in their care, perhaps a peculiarity of France’s paternalistic bent. One doctor, at least seven times, had made the decision to end a patient’s life without telling anyone in the patient’s family or the other staff. A jury acquitted him of murder, although the decision is being challenged.
The Murky Area around Medical Futility
Tim Thorstenson, spiritual care manager and ACPE supervisor at UCLA Medical Center in Santa Monica said “In a very large percentage of cases we are way over treating rather than creating an enhanced experience, so we developed a policy on medical futility, which empowers doctors to withdraw life support in futile cases, no matter what the family wanted.” Thorstenson, whose passion is ICU complex cases, said it’s part of a nationwide trend, but hospitals get skittish if families protest, particularly those from orthodox religions. “ICU is incredibly expensive” he pointed out; “it takes a quarter of Medicare dollars.” Thorstenson cited the case of the brain dead girl in California who is still brain dead, but breathing on a respirator and in a nursing home. While there are statutes in some states about how to determine death, until medical futility can be legally defined and state or federal regulations put in place, this is still a largely murky area that bothers doctors and nurses.
At Thorstenson’s hospital recently there was Burmese woman in her fifties near death from multiple complex conditions, who was on a respirator and other support systems. Her family is Buddhist and her brother said he could not take responsibility for the end of her life; it would create a negative karma and cause more suffering for her in the next life, and for him, too. Fear is the emotion that drives these decisions. Thorstenson said they took the case to the ethics committee and invoked futility, which got the support of the physicians. However, the irony was the doctor rotated off the case and when the new doctor came on he felt it wasn’t fair to have him make this decision because he was new to the case. As a result, the woman continued to receive life support for another three to four weeks.
“A belief,” said John Skanse, who has served as chaplain for nearly seven years in Einstein Medical Center, one of Philadelphia’s most active adult trauma centers, “is a specific perceived truth tied to an emotion. People make choices based on their beliefs. Our job is to help people discover what they truly believe so they won’t regret making the decision. The issue is the focal point of all care; we help them not to feel alone,” he said.
“Most people think medical care can solve everything,” noted Skanse. “I’m up front about this. We are human and will do all that humans can do. I happened to walk by a doctor who was talking with a family and when she got to the DNR part, they changed the subject. She explained it three different ways, as something that would be good to have because the patient was getting worse. They continued to change the subject, asking questions such as “What’s next?” Skanse said the family expected God would heal the person if they had enough faith. Skanse said he can affirm God, but tries to reframe it from being God’s choice. He also explains the family’s belief system to the doctors, so everyone can understand.
They Don’t Want to Be Blamed
Skanse told of a woman whose dad was in the ICU intubated and unresponsive. A pump kept blood flowing into his heart and while he was a potential heart transplant patient, doctors knew he would not survive a transplant. Death was certain eventually. Skanse said he tried to explore where the daughter was at. “She was unwilling to make a choice about withdrawing care; the doctors asked her many times. She was afraid the rest of the family would blame her. Skanse said he looked for a time to be near the patient when other family members visited. I had them all talk about it and the woman finally saw that she had the support of the family. I helped the family express their love and support, talking with each other. This also helps the doctors understand when families are coming around,” he said.
“One of the biggest problems with dying is medical science,” said Patricia Malcolm, “that we can keep a dead person ‘alive.’ Families don’t perceive what their loved one goes through in pain while they are being kept alive. They say, ‘I can’t be the one to pull the plug; I don’t want to be blamed.’” Malcolm is staff chaplain for the pain and palliative care service at Christiana Health System covering two hospitals in Wilmington Delaware. It is the top trauma facility in the Route 95 corridor. “I deal with patients on life support on a day to day basis,” she said. Covering the two hospitals the team includes nurses, doctors, and administrators. (And they need social workers.) They see 200 to 250 patients a month between both hospitals.
With families, Malcolm said, we have gentle conversation; we ask them what their loved one was doing six months ago or three months ago. Sometimes they have an epiphany and realize just how much has changed. It’s hard work,” she said. “We sit and talk. If they cry we ask, what’s going on in your tears? Doctors can be impatient, she said and they try to educate the medical team as best they can. “We have to give people time; we can’t bully them; they must come around on their own.”
Malcolm told of a woman whose four sons were with her and saw how bad she looked with all the IVs and tubes. But the youngest son said no to letting his mother go. “I sat down on the floor with him and held him in my arms. He said, ‘Miss Pat, I have to show my mom I’m a good boy.’ He didn’t want her to die until she knew she could be proud of him. I told him we are always proud of our kids. Leave her a legacy. Go in that room and tell her what you want her to hear.” Malcolm said he was finally able to do that and let her go. “He thanked me for helping him through it.”
Linda Golding spent 30 years in classical music before switching careers to become an on call staff chaplain at New York – Presbyterian Hospital in New York City working in neurology, radiation, and outpatient units.
“We have a wide range of folks from different cultures,” she noted. “I try to understand what the family thinks and what the terms (definitions of death) mean to them,” Golding said. In all the units it’s really about expectation; we need to get the family to talk. We try to give them space to say what they feel. We get into what the family is seeing, and their culture. We help facilitate it (the decision).”
Golding, who also goes on ethics consults, cited a recent case of a middle aged woman who was very ill. She was in a coma, but was not declared brain dead. Over many years she had demonstrated great emotional and physical courage. Her family knew she would not want to live after the coma. The possibility that her life would end was okay. The family felt strongly about letting her go; her own spirituality, she had a readiness,” Golding said.
What Chaplains Need To Do
“Chaplains have the opportunity to get genius about brain death,” said Ron Oliver, who is also a member of the APC board of directors. “Learn the nuances of the stressful environment. Keep up with the new information.” He said that chaplains, especially those who work in neurological and intensive care units “should have basic clinical skills.” The organ donor organizations are all expert on the nuances, and they always have someone on the scene in these cases. They can be helpful to you,” Oliver said. “Get integrated with the clinical staff, tell yourself, I can be the one to fill the clinical gap,” he said. “Once the doctors release the information, I would look for someone in the family who is not lost in the emotion and say, let me walk you through this; somebody needs to understand and that person can be the messenger for the family system.”
“We want to return the responsibility to the family,” Oliver added, “but it’s not easy. Even if there’s a one percent chance, the family won’t sign. Doctors say we just want permission to pull the plug, yet the family says 72 hours ago he looked fine. Let’s talk. I want the decision to be theirs, but so many say, ‘I killed my child’ with their head down on the table weeping in agony.”
“Chaplains need to be more aggressive and play a therapeutic role,” said Tim Thorstenson. “We are not just supporters. We are a clinical discipline; we are part of patient satisfaction scores; we are clinicians.” Before coming to UCLA two years ago Thorstenson worked for 20 years in Minnesota, where he grew frustrated at the lack of influence chaplains had with doctors. This prompted him to get his doctoral degree in bioethics and then become director of ethics for his health care system. He mentioned a military chaplain friend who uses the expression, “I want your elbows on the table” meaning I want your full participation. “That’s the curve we shoot for; every chaplain needs to be more expressive,” Thorstenson said.
Another important issue for chaplains is to understand their organization’s policies and practices around issues of futility. Sue Wintz, who spent over 25 years of her clinical work as a chaplain in ICU, trauma, and palliative care says, “Sometimes there will be members of the intradisciplinary team, including physicians, who are not familiar with the organization’s policies. That can create more chaos when they are faced with situations where conversations need to take place with families, especially if there are misunderstandings and disagreements among the physicians themselves. This can result in situations where administration and the organization’s risk management and legal teams have to become involved when it could have been avoided.
Wintz helped in developing a protocol and process to address potentially difficult situations when a patient’s prognosis was identified, whether at admission or during the course of treatment, as potentially becoming futile. The work group, led by an ICU physician and including members of all disciplines, identified not only the medical but also the psychosocial and spiritual issues involved. The process included early intervention with families through assessments by all disciplines and regular family meetings from the start to share medical information and determine goals. Education was also provided to all physicians, including consultants beyond the ICU specialist, as well as all the disciplines so that everyone knew their role and responsibilities. Everyone on the team was empowered to identify “red flags” and activate the policy. The protocol significantly reduced the number of cases that led to conflict, including the need for administrative intervention.
Helping Families Grieve
Ron Oliver turned support for grieving parents around by making it an outreach program. Nine years ago he founded their pediatric hospital’s bereavement intervention program at Kosaid Children’s Hospital. We had bereavement programs at the hospital, support groups, as if to say “here they are come and get them”. They are not going to come to Louisville to see a therapist or join a support group. When they wake up at two in the morning grieving, their pastor can’t help them. But we reversed it. We show up at a funeral home or family home, he said. In fact, our bereavement coordinator drove 12,000 miles around the state last year. We are coming to your place. We assess the family, those at most risk. We invite both parents to invite 15 others, friends and/or relatives, to a restaurant in their community. This will become their support group. We help them understand how to help the grieving family. “
“We help them to remember the child, talk about the child, go over to visit, show up,” said Oliver. “We can’t replace what happened. This is about care, not repair. We address the myths about grief, like somebody mentioning the child’s birthday and then feeling terrible for bring it up. Time does not heal grief, but grief can be accepted. We leave it to the group. We remain a resource; for example we can connect them with the organ donor organization or the autopsy report.” Oliver said the program is funded by an internal foundation and costs $85,000 a year.
In Folsom, California, Chaplain Lee Erickson saw a need for closure after the three days of anxiety the young man’s family experienced about whether or not he had died. “I came on duty on day three of this situation that had been dragging out and there was a need for a community goodbye.” Erickson offered the family a community blanket ritual as an option. All of the members of the family stand around the bed holding a part of the blanket over him. Each would express something, such as “I want to wrap you in warmth” or “I want to cover you with love,” and other ways of expressing their feeling. As a group, they place the blanket over the patient; it is a tangible symbol.
Marian Betancourt is associate editor of PlainViews and a professional writer and editor who has published many books including What to Do When Love Turns Violent, published in 2001 by HarperCollins. The New York Times called it “the best single resource.” It is now available as an ebook.