A Delicate Dialogue
When Nashville, Tennessee, resident Judy Williams recently had a replacement battery for her car installed, she left the service man a bit speechless after he explained the new part’s warranty.
“I came home and immediately sent an email to my kids and to a few friends, and I said, ‘I told him my new car battery is going to last longer than I will,’” Williams laughed.
Her email recipients, aware of Williams’ quirky sense of humor, most likely chuckled right along with her, which is exactly what she wanted.
Six years ago, Williams was diagnosed with lung cancer, and she had surgery at Vanderbilt University Medical Center (VUMC). She was adamant about one possible aspect of treatment, and she made sure her three adult sons were aware of her wishes.
“When I found out that I had cancer, I said to my family, ‘I’m telling you up front, I’m not doing chemotherapy. Period,’” she said. “I’m a pragmatist. I’m 79 years old, and I’ve been widowed for 20 years. I’ve spent a lot of time in hospitals, not just with family members, but I was a nurse for a while. I’ve seen how families have agonized — and at times argued — about end- of-life concerns. I don’t want my children to have to go through that. My physician, Dr. Mohana Karlekar, and I have made a plan. My family is aware of the plan, and they agree with it.”
Williams is among the estimated one-third of Americans who have completed an advance directive for health care, a document that details an individual’s specific wishes regarding their care if they become seriously ill. The document also names someone to make treatment decisions for them if they are unable. Once an advance directive is completed, ideally it is added to a patient’s electronic health record (EHR) so it can be easily referenced during an individual’s course of care.
Putting pen to paper
While medical providers and patients typically agree that it makes sense to have medical wishes well documented in advance of a health crisis, according to research published in July 2017 in Health Affairs, a leading health policy and research journal, just 36.7 percent of adults have completed an advance directive for health care of any kind.
At Vanderbilt’s mass flu vaccination event in 2018, VUMC and Vanderbilt University faculty, staff, students and volunteers were surveyed about their own advance directives. Of the 2,185 individuals surveyed, 27 percent had completed advance directives, although 77 percent thought they should have one. Eighty-two percent of those who felt that they didn’t need one were younger than 35. On that same day, more than 1,800 advance directive for health care forms were distributed, 215 people stopped by an information table staffed by biomedical ethics and palliative care representatives, and seven advance directive forms were witnessed and signed.
Improving end-of-life care and encouraging conversations between clinicians and patients about advance directives and goals related to their quality of life (also known as goals of care) have been an increasing focus at health care institutions nationwide. At VUMC, a special committee established in 2018 and led by Bonnie Miller, MD, MMHC, is spearheading efforts to educate Medical Center staff about the importance of completing their own advance directives, and to provide guidance to clinicians as they initiate these often-difficult conversations with patients and patient families. The efforts also include expanding medical and nursing school training related to advance directives and end-of-life care.
“We’ve been struggling over what to call this initiative,” said Miller, Senior Associate Dean for Health Sciences Education at Vanderbilt University School of Medicine and Executive Vice-President for Educational Affairs at VUMC. “It’s easier to say ‘end-of-life,’ but if I were to pick a single phrase to best define this effort, it would be ‘goal-concordant care.’ That is, aligning the care our patients receive with their values and goals at every step along the way, even before they’re seriously ill.
“And the only way to know what those goals and values are is to ask, and then document that conversation in the electronic health record so that all other care givers are aware.”
Jeff Balser, MD, PhD, President and CEO of VUMC and Dean of Vanderbilt University School of Medicine, has emphasized the importance of this initiative for patients. An upcoming Leadership Assembly in 2019 will center on this effort.
“We will work to assure that all adult patients have goals of care documented in eStar (VUMC’s EHR), including preferences for end-of-life care. These goals will be patient-oriented and clinically sound, and available to clinicians and patients at all times,” Balser said.
Goals of care differ from advance directives in that they spell out what is most important to patients when it comes to daily living in the context of current health circumstances. Their medical teams can then assist them with action plans designed to help them achieve those quality of life goals. This can be as simple as scheduling in-home, fall-risk assessments by an occupational therapist so that individuals can more safely remain in their own homes. Goals of care shift depending on a patient’s evolving health status and other social factors, and it’s important that health care providers regularly check with patients to update the goals, especially with those in declining health, Miller said.
“As people progress through illness, some things that might have been important in the past may not be as important anymore,” she said. “That’s just a natural process.”
Strategies for difficult discussions
As one of the first in a series of educational and awareness activities guided by Miller’s committee, the VUMC Palliative Care Service, assisted by staff from the Center for Biomedical Ethics and Society, led a three-day educational event in November 2018 called Difficult Conversations with Seriously Ill Patients. The goal was to help VUMC clinicians build their skills in opening dialogue with patients and their families and to consider workflows that might make those conversations easier to achieve.
“One of the biggest challenges for clinicians is finding time to have these important conversations in the context of very busy days, whether in inpatient or outpatient settings,” Miller said. “What can teams do to embed these conversations into the workflow? These educational sessions also address that logistical challenge.”
Thirty individuals representing eight different medical specialties who had expressed interest in improving their skills in this area were invited to the training, which was led by Mohana Karlekar, MD, medical director of the Palliative Care program, and Maie El-Sourady, MD, assistant professor, Department of Medicine and Biomedical Informatics. Attendees were given direction on how to be both effective and empathetic during difficult discussions with patients and families. They role played, using the skills in simulated care scenarios.
“You’re talking about uncertainty, and you’re talking about death and dying, which certainly isn’t accepted in this culture,” Karlekar said. “Some people are naturally gifted at this, and some people are pretty good, but everyone can get better. There’s a structure and a process to these conversations, very much like you follow a process to place a central line or a Foley catheter. If we can give people the same fundamental tools on how to handle these conversations, then we’ll all do better.”
Karlekar and El-Sourady are a part of the adult Palliative Care Program at VUMC. Palliative care is a multidisciplinary approach to caring for patients facing a serious illness, and the palliative care team includes specially trained physicians, advance practice nurses and other nursing staff, chaplains and social workers.
And palliative care is not limited to end-of-life care. Palliative care providers approach care from a whole patient/whole family perspective, and they address everything from establishing goals of care and completing an advance directive to improving pain management. Palliative care team members at VUMC have long provided inpatient consultations for medical teams and critically ill patients throughout the Medical Center.
In 2012, a nine-bed inpatient adult Palliative Care Unit was opened at VUMC on the fifth floor of the Round Wing in Medical Center North, which gave the service a clinical home. Physicians can also request that patients be seen on an outpatient basis by the Palliative Care team, with these visits occurring at the Adult Primary Care Clinic on the main VUMC campus, at Vanderbilt Health One Hundred Oaks and at the Vanderbilt-Ingram Cancer Center.
The patient as teacher
Kevin High, RN, EMT, one of Williams’ three children, is a senior associate with Emergency Medicine at VUMC. A former flight nurse with Vanderbilt LifeFlight, with more than 30 years of experience in emergency medical services, High routinely witnesses patients and their families struggling with end-of-life decisions. He’s also seen the support provided to families during these situations improve greatly through the years. When his mother received her cancer diagnosis, High was quick to request a consultation with Karlekar.
“We’ve always been very open, so I’ve always known Mom’s attitude, that death is a part of life,” High said. “We lost my father when I was 11, and Mom would have been in her early 30s. Then she remarried, and my brother and I gained a stepbrother. My stepdad raised us. He died in 1993, when my mother was in her mid-50s.”
Williams is grateful to Karlekar for her “willingness to call a spade a spade and talk about all the grit of dying.”
“The country’s population is getting so much older, and there are a lot of people like me,” Williams said. “So, we’ve got to talk about reality here. There are a lot more tools, and there are folks like Dr. Karlekar.”
Karlekar and her team are also meeting with providers across the medical campus and at off-site clinics to increase awareness of palliative care, and to assist clinicians with building their communications skills. And as awareness of the palliative care group has grown, so have their consultations. In 2010, the adult Palliative Care Program had 1,338 initial consultations. By 2017, they nearly doubled that with 2,556 consultations, and in 2018, the group had approximately 2,800 consults.
Under the direction of Joseph Fanning, PhD, assistant professor of Medicine, the Clinical Ethics Consultation Service within the Center for Biomedical Ethics and Society can be requested at any time by a patient, family or care team. The team, made up of Fanning, Kate Payne, JD, RN, NC-BC, and Jessie Turnbull, MD, are on call to provide assistance.
“Our job at Vanderbilt is to support shared decision making, especially when it gets difficult, and difficulties can certainly lie in end-of-life care,” Fanning said. “The conflict can arise in a variety of ways, and just the underlying fear and difficulty of accepting death on both the medical team side and the family side can make shared decision making difficult. When people call us, we don’t pretend that we have all the answers, that we’re the ethics experts, and you’re finally going to get the right answer. It’s more about supporting ethical deliberation in really hard situations.”
In 2013, Fanning co-authored a book based on interviews with more than 50 patients titled, “What Patients Teach: The Everyday Ethics of Healthcare.” The book delves into what patients perceive about their interactions with their health care teams. What he learned changed how Fanning now does ethics consults and how he counsels medical providers to interact with patients and families.
“I pay more attention to how I’m engaging a patient or their family,” he said. “I think about whether I’m actually sending them a message that I’m in a hurry. What am I doing with my body to show them that I’m paying attention? It’s about the relational ethic and about the habits and skills of building a collaborative relationship with patients and showing compassion in the presence of vulnerability. We need to be aware and think about how we show our patients that we’re not just driven by protocols and evidence, but also by our creativity in the moment, listening to them, discerning how to make their life or their death better.”