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An Exploration of End-of-Life Care in Tennessee, Erin Mauck, Community and Behavioral Health, Dr.PH
An Exploration of End-of-Life Care in Tennessee
Written by Hannah Warren
Erin E. Mauck, Dr.PH., concentration in Community and Behavioral Health
Dr. Deborah L. Slawson, Faculty Advisor
Erin Mauck first attended East Tennessee State University from ’92-’94 as a music major. After a break, she returned in 2010 to finish her bachelor’s degree in sociology with a minor in biology. She was given the opportunity to remain at ETSU for her master’s degree in sociology, which she was eager to pursue. For her master’s thesis, Erin drew on her own family’s experience with hospice and end-of-life care to explore assisted dying legislation. Through a class assignment she learned about Oregon’s Death with Dignity Act. During this time, she received a research grant from ETSU to travel to Oregon to meet with physicians and proponents of the Act and the state’s end-of-life (EOL) healthcare programs. Moved by what she learned, she knew she wanted to continue her research in this area, which led to her apply to ETSU’s Doctor of Public Health program. Going into the program, Erin spoke with Dr. Deborah Slawson about her intention to continue exploring the quality of EOL care in Tennessee. She wanted to know that she had a professor who would stand behind her for the topic she wanted to research for her dissertation.
Death can mean different things in different cultures, but with certainty, it is something every human will face. Some individuals are very outspoken about their end-of-life preferences, and others prefer to avoid the subject altogether. Every state has a variety of services including hospital palliative care, long-term care facilities, and various hospice organizations to provide EOL care, but like all healthcare systems, some are more accessible than others. Oregon has enacted, in addition to these services, the Death with Dignity Act, which provides individuals who have been diagnosed with a terminal illness and less than six months to live the option to begin a series of steps to receive a prescription for life-ending medication. Individuals who wish to take advantage of this Act must have their diagnosis confirmed by a second physician, undergo a psychiatric evaluation if deemed necessary by the prescribing physician, and make both a written and verbal request for the medication fifteen days apart. About two-thirds of the individuals who request the prescription use it. When Erin visited Oregon for her thesis research, she was able to speak with healthcare providers and advocates of this service. She recalls this experience as life changing. As an advocate for autonomy, Erin began to see that there needed to be better and more accessible options for individuals in need of EOL healthcare, whether it was for an unexpected terminal illness or simply old age. When she looked at the rankings for states’ quality of EOL healthcare, she saw that Oregon was ranked near the top while Tennessee was ranked towards the bottom.
Erin’s dissertation is aimed at understanding what it will take to improve the quality and accessibility of EOL healthcare in Tennessee, from education to legislation. From reading the literature, she learned that a version of the Death with Dignity Act has been proposed to the Tennessee legislature three separate times, but never made it past committee. When she began digging into Tennessee’s EOL healthcare statistics she learned that there are only six residential hospice facilities listed on the Tennessee Department of Health website. During her 300-hour field placement at the James H. Quillen VA Medical Center here in Johnson City, Erin worked with the hospice and palliative care team. She saw that it is often difficult emotionally and physically for a single at-home caretaker to fulfill all of their family members’ needs alone, that hospice was not always within reach, and some individuals did not want to pass away in their homes. There is not a one-size-fits-all solution for EOL healthcare.
Left, Erin Mauck, Right, Dr. Deborah Slawson
For her data collection, Erin began by interviewing professionals in areas of EOL healthcare from the healthcare industry and state healthcare committees. She used purposeful sampling to select individuals who would inform a questionnaire she would later take to the Tennessee Legislature. She interviewed ten stakeholders from the field including heads of hospice, palliative, and geriatric care, specialists in aging, and others from the University of Tennessee, Knoxville and Vanderbilt, and ETSU’s Quillen College of Medicine. She asked questions about the gap that seems to exist in medical students’
education regarding EOL care and where the root of the problem was for getting funding to aid care projects. She wanted to know from people working in the system, what the strengths and weaknesses of Tennessee’s EOL healthcare are. As she got further into these interviews, she was provided with the names of other individuals that might have interest in speaking with her about the topic, and she began speaking with them as well. One physician in particular noted how hospice carries a stigma. Many patients feel that by choosing hospice care that their physician is just letting them die, when the reality is that people are often referred to hospice too late for the patient to fully benefit from it. Palliative care does not seem to carry this same stigma. She also asked what could be done to increase the use of advance directives so families were not left with making difficult decisions regarding their loved ones’ healthcare. These ten interviews that were initially meant to inform her interview guide for state legislators, became a large portion of her data.
From these interviews she was able to form some initial conclusions to guide her next set of interviews. She found that much of the issue with the quality of EOL healthcare in Tennessee is financial. Residential hospice facilities are expensive, so much so that unless an individual is independently wealthy or has private insurance, it is often hard to afford them.
The reason there seemed to be limited numbers of new physicians going into hospice or palliative medicine is because there are other specialties with much higher pay. There were also discussions on the topic of continuing to treat patients, and the philosophy of modern healthcare. Additionally, she learned that longterm care facilities like nursing homes, which have traditionally been a source of some EOL healthcare are trending toward becoming rehabilitative facilities for physical therapy. She has not yet completed her dissertation, but is in the process of completing interviews with state legislators from both the senate and house health committees.
After narrowing down her interview guide, she wants to ask the legislators how they make their decisions on healthcare policy. She wants to know if they are motivated by beliefs, personal experience, political party preference, etc., in addition to getting their perspectives on the questions of “what is end-of-life healthcare, and what is endof-life healthcare policy?” By interviewing members of the senate and house health committees, she hopes to find out what it would take to put in place a state-wide initiative to increase the use of advance directives, in addition to increasing understanding about the reasons for lack of caregiver support and the emotional and financial burdens they bear. Historically there have been younger family members to take care of the elderly, but the average
age of the population is increasing, and this is not always possible due to employment, geographic distance, etc.
Erin is grateful for the exploratory nature of this project. She hopes that initially her work can increase public awareness of EOL healthcare needs in the state and increase the use of advance directives. She wants to educate the public that you do not have to have an attorney to create them, and how simple they can be to complete. She also wants to increase awareness for the need of increased education on EOL care for healthcare providers and the public. She plans to defend her dissertation this July and to publish several articles from her findings. After graduation she would like to continue to work in academia, and to continue her research that will contribute to improving end-of-life healthcare in Tennessee.
Left, Erin Mauck, Right, Dr. Deborah Slawson
