Abstract
Comprehensively defining end-of-life healthcare is a challenge due to the diverse areas of healthcare involved, the various stakeholders, and the range of patient options. This qualitative study examined many areas of end-of-life healthcare including quality, areas for improvement, and healthcare policy in Tennessee, in which the definition of end-of-life healthcare was a focus. Data were collected using semi-structured interviews with 19 participants who included end-of-life healthcare experts and Tennessee legislators. Through this research an operational definition of end-of-life healthcare, encompassing five concepts, was developed. Concepts include: a diagnosis, a timeframe, type of care, location of care, and planning for the future. When considered together, they are the embodiment of what end-of-life healthcare encompasses. Not in a one-fits-all definition, but individually tailored. An understanding of what end-of-life healthcare denotes is essential to maintaining open communication, high quality standards of care, and the protection of patient autonomy.
Keywords
Introduction
There is not an exact definition of what end-of-life is, so defining what end-of-life healthcare is can be challenging. According to the National Cancer Institute, end-of-life care includes support for not only patients but their families as well. These supports can include social, emotional, spiritual, and physical needs (National Cancer Institute, 2020). In a broader sense, end-of-life healthcare is specialized care that is given to a person when they are close to dying. There is a general consensus that it ends with the death of a person, but when it begins or what it involves, is hard to determine (Lowey, 2015). It also varies depending on an individual person’s needs and personal goals.
Over time the language used to describe end-of-life care for individuals with a progressive or terminal illness has changed from care of the dying to terminal care, palliative care, hospice care, and in some circumstances, to supportive care (Clark & Seymour, 2002). These terms are frequently used interchangeably, and the preference of which terms to use and their specific meanings have evolved (Izumi et al., 2012). The broadening of end-of-life healthcare influences the interpretation of what it actually means, and this further complicates the attempt to define it specifically (Gysels et al., 2013). Definitions for end-of-life healthcare have expanded significantly over time both in regard to when it begins and for the conditions for which it is appropriate (Clark & Seymour, 2002).
The time interval for when end-of-life begins has no specific definition, and the period of time when end-of-life care is administered is defined by policy, regulatory, and/or administrative guidelines (National Institutes of Health, 2004). This means that there is no evidence of a scientific nature to support the medical indications that distinguish end-of-life. In a National Institutes of Health report, it is discussed that “people can, in some respects, be considered to be approaching death from the moment they are born” (National Institutes of Health, 2004, p. 27). In contrast, people sometimes assume that providing holistic or comfort care to people, during the days or weeks when they are actively dying is what end-of-life care is. However, if end-of-life care only includes the short time period before a person’s actual death, many people will not receive sufficient care (Izumi et al., 2012).
Hospice and palliative care are most often associated with end-of-life healthcare, but there are many other types of care that individuals may receive. These can include, but are not limited to, intensive care, critical care, the use of ventilators, non-curative chemotherapy, and clinical trials. Withdrawing or withholding treatment, though not an active form of care, are also options for dying patients when considering their end-of-life choices. Some of these options depend on the location of the dying individual, and whether or not they are located in a hospital setting or at home. When considering the concept of end-of-life care, there are currently an array of definitions and terms that subsist in conjunction with each other (Pastrana et al., 2008). Numerous papers have highlighted the fact that the variety of definitions and terminology is challenging because it impedes the development of the end-of-life healthcare field. Not only clinically, but academically and administratively as well (Hui et al., 2012).
The difficulty in acknowledging a specific definition of end-of-life healthcare is that it can vary from one person to another. According to the National Institutes of Health (NIH), there is a lack of clarity in the definition of end-of-life that can cause ambiguity and can be a barrier to research (Hui et al., 2012). It could be problematic when proposing relevant healthcare policy for funding or initiatives. If a legislator has limited knowledge on what end-of-life healthcare is, or has a narrow view of what it entails, it could lead to confusion and therefore inhibit much needed policy reform. This ambiguity could also impede much needed conversations between doctors, patients, and their families, and lead to unwanted or unneeded treatments and loss of autonomy for a dying individual.
Methods
Context for the Present Study
The main focus of this research was to examine the perceived quality of end-of-life healthcare in Tennessee, including the strengths, weaknesses, and areas that need improvement. It also measured the support for end-of-life healthcare policy, the politics that impact end-of-life healthcare policy reform, and the policy-making process that is employed by Tennessee state legislators. In an effort to better assess these areas, determining a clear definition of what end-of-life healthcare is from the perspective of the participants was imperative, and is the focus of this article.
Procedures and Participants
This exploratory research used a qualitative study design to determine how end-of-life healthcare could be improved in Tennessee and how problems, policy, and politics come together to advance change. To collect primary data, semi-structured in-depth interviews were conducted in the state of Tennessee, between October 15, 2019 and April 23, 2020. For the research design, the non-probability sampling technique of purposive sampling was used, because the goal was not to generalize to the wider population, but to understand the processes and possibilities of end-of-life healthcare in Tennessee. Purposive sampling allowed the study population to be based on specific attributes and subjectively represent groups of stakeholders equally.
The Tier 1 experts (n = 10) included experts in hospice, palliative, and geriatric medicine, and other experts with an extensive knowledge of end-of-life healthcare. These experts were employed by entities including West Cancer Center Memphis, the University of Tennessee’s Memphis College of Medicine, Wellmont Hospice and Palliative Medicine, East Tennessee State’s Quillen College of Medicine, the Tennessee Commission on Aging and Disability, Vanderbilt University Medical Center, Alive Hospice, and the James H. Quillen VA Medical Center. The Tier 2 legislators (n = 9) were made up of members from the health committees of the Tennessee House of Representatives (n = 5) and the Tennessee Senate (n = 4). The health committee of the House of Representative has 23 members, of which six are democrats and 17 are republicans. The Senate health committee has nine members, of which one is a democrat and eight are republicans (Tennessee State Government, 2019).
Tier 1 participants were recruited through email, LinkedIn, and through recommendations by other participants. After the completion of Tier 1, recruitment began for Tier 2. Initial emails were sent to all nine members of the Tennessee Senate health committee and all 23 members of the Tennessee House of Representatives health committee. Of the 32 legislators contacted, 13 agreed to participate and scheduled interviews, but ultimately only nine were able to participate in the study due to COVID restrictions enacted in March 2020.
Two interview guides were used for this research. Open-ended questions were employed to allow participants to provide full and detailed responses about their experiences and to allow more comprehensive answers. The Tier 1 interview guide consisted of 16 questions. The Tier-2 interview guide was shorter in that it consisted of only nine questions. This was due in part to the fact that the Tier 2 interviews were limited to 15 min.
Data Collection and Analysis
Tier 1 interviews were conducted between October 14, 2019 and December 20, 2019. Six of the interviews were done face-to-face and four were completed by telephone because of logistical difficulties. Tier 2 interviews were conducted between March 2, 2020 and April 23, 2020. Five of the interviews were done face-to-face in the legislator’s respective office in the Cordell Hull State Office Building in Nashville. Eight additional interviews were originally scheduled on Tuesday, March 3, 2020, but a tornado hit east Nashville that morning. All eight interviews were rescheduled for Tuesday, March 17, 2020, but on the afternoon of Monday, March 16, 2020, the Cordell Hull State Office Building was closed indefinitely due to the COVID-19 pandemic. Of the eight legislators who had rescheduled interviews for March 17th, four agreed to participate from home. Two were completed by telephone and two were completed via video conferencing.
At the beginning of each interview, the IRB approved consent form was reviewed and either signed or verbally agreed to if the interview was done remotely. Before beginning the interview, participants were advised that they could skip any question they did not want to answer or stop the interview at any time. All Tier 1 and Tier 2 interviews were audio recorded with the participant’s permission, and audio recordings were fully transcribed replacing participants’ names with interview identifiers. For the Tier 1 participants, the identifiers ranged from E1 to E10. Tier 2 participants were identified as L1 to L9. All identifiable data were removed for confidentiality purposes.
Through an initial phase of open coding on all 19 interviews, key concepts and themes were identified. This allowed for the data to be examined and codebooks created for both tiers. The transcriptions from all 19 interviews were then uploaded into QSR International’s NVivo® 12 qualitative data analysis software and divided into two projects to separate the tiers (QSR International Pty Ltd, 2020). The codebooks for both tiers were used to create nodes and sub-nodes for secondary focused coding. After this process was complete, a second review was done to ensure coding accuracy. Reports summarizing all coding were generated in NVivo® for both tiers.
Data from the interviews were summarized according to concepts and themes and relevant quotes were selected to highlight them. This was the only display of findings used for this study. The attempt to quantify data was futile as there were no dichotomous responses given during both the Tier 1 and Tier 2 interviews. Even responses that had either a supportive or opposing tone were typically paragraph-length answers that needed to be displayed in their entirety.
Results
End-of-Life Healthcare Defined by the Experts
When participants were asked what they thought of when they heard “end-of-life healthcare,” their responses encompassed numerous ideas and concepts. These included a diagnosis, a timeframe, the type of care a person receives, the location of care, and planning for the future, among others. Participants typically mentioned two or more thoughts when describing what end-of-life healthcare meant to them. Diagnosis usually refers to a life-ending or terminal diagnosis from a doctor. According to one participant: I think of it primarily as someone who has been given a diagnosis that is certainly life limiting, if not completely life ending. I mean we are all going to have an end of life, we just don’t know when it is.
Timeframe most often refers to 6 months or less to live, but can also mean the last 2 years or the last 2 weeks of someone’s life as explained by one respondent: I think of that more in the context when people have been given a definition of an ending that may be a month away, and that may be years away, but you know it’s there. But the journey… starts today, the day they found out.
Several participants mentioned the different types of care a person may receive as part of end-of-life healthcare, including hospice care, palliative care, or continued treatment: I think of palliative care and hospice care, but a lot of people just think hospice care. But the reality is a lot of patients aren’t ready to accept or ready to talk about hospice care. So palliative care ends up being that end-of-life care. I think of palliative care and hospice. I think of… if we’re doing it correctly… I kind of have two mindsets.
Location of care refers to the place where the care is being done. This includes one or more different places at different stages during end-of-life: When I hear end-of-life healthcare I’m just thinking, “where is their healthcare going to take place for the end of their life?” You know… whether their end-of-life healthcare is going to be at home… or is it in a community nursing home… is it assisted living… is it in the hospital? So where… that’s what hits me when I hear that. And who is taking care of their end-of-life healthcare? Is it… are they under hospice care or are they in ICU? You know… with internal medicine… you know, trying to do everything they can to keep them alive, or what are they doing to keep them comfortable? I think of comfort measures, and you know, dignity and respect. I think of keeping the people at home. That’s what I think when I think about end-of-life.
The fifth main concept mentioned was planning for the future. This includes discussions around goals of care, having an advance directive or living will, making one’s wishes known, and whether or not the patient values quality of life or quantity of life. It can be something that is discussed years in advance or days before death. One participant explained a view shared by several respondents: What I think about is quality of life, you know? What should that end-of-life season look like for these patients, dependent on what they really desire it to be. What’s quality of life for them and how can we provide care that honors that?
Others shared this long-term perspective of planning: My view of end-of-life care is a future, planning for your future care. So, if you have a long-term illness, I think looking to the future… how you’d want… “your kidneys are starting to fail… would you ever want to go on dialysis? Tell me your goals of care. We’re going to do everything to forestall that decision, but ultimately your illness might lead to something like that. Would you want that?” So, I think that as a, when I provide a primary care perspective to the patient, I try to get an idea of where they want to go. We need to switch it to make it something that is a routine conversation early in someone’s life that is revisited frequently, because it changes depending on where you are. We need physicians and healthcare providers to get more comfortable with death, because right now we see it as the adversary that we’ve got to beat, and the reality is we’re always going to lose. The moment we go “it really isn’t about that, because yes, I’ve got all kinds of things I could do for this cancer, the question is you’re the one with this cancer. Here’s what the consequences are? Here’s what happens if I don’t treat it. What is important to you? What do we need to do?” Right now, we have more people dying where they would least want to be, which is in the hospital tied with tubes, not visiting family, no pets, not getting to do all the things they love. Because… we’re unable to say to somebody “that’s a horrible way to die” and, we need to get more comfortable in medicine saying that.
In addition to the five main concepts around end-of-life healthcare, several of the respondents said it made them think about gaps with isolated pockets of excellence. That there are “hit and miss” good areas of end-of-life healthcare, but that in a lot of ways, we miss the mark: I think that there’s a lot of people who are concerned with the care of the imminently terminal and the dying who do great handholding and caring. I think of the great advances that we’ve had systematically, programmatically, and clinically over the last two decades…. So, I think of improvements, but I also think of gaps. I think that unfortunately the healthcare system in America is still inverted. The primary care base is not good, and the outpatient base is not good. We don’t have any real approach to care that’s geographically based, or population health based. It’s, it’s mostly about tall buildings and subspecialties. About 95% of U.S. graduates go on to complete a subspecialty and so, with that being the case, continuity of care um… is at a premium. And when you don’t know the patient, it becomes difficult to form those deep relationships that make good palliative care possible. You know, still in America now, depending on which area of the country you look at… which demographic you’re cutting it with, the average length of stay or the median length of stay in a hospital is 11 to 14 days. That’s plenty of time to do good symptomatic work. It is far too little time to do good psych, social, and spiritual work. To get the full benefit of end-of-life healthcare, you have a well-rounded team that is focused on the patient and their family, to make sure that they have the most support that they can possibly get. Where they’re loved on by people that know them, and their symptoms are managed, and their family is supported. But… my other train of thought is, I think that the current healthcare field does end-of-life care poorly because we don’t want to… quote unquote… give up on patients or make them lose their hope. So, they’re going to do everything possible to keep them alive, and they forget that death is inevitable. So, we put people through all of these treatments, all of these hospitalizations, until there’s literally nothing else, and then you say, “oh it’s time for hospice.” That’s where you have people come on hospice that are on hospice for… hours, or maybe just a couple of days, so they don’t get the full benefit of what hospice has to offer. Then they pass away. You know? So, that’s a long-winded answer just to say that the way that healthcare does end-of-life… I think that we have a long way to go.
One participant shared that end-of-life healthcare made them think of missed opportunities and misunderstandings. Missed opportunities in the ways in which patients approach hospice and palliative care, and how they miss out on quality when quantity takes a front seat. There are misunderstandings in how hospice makes people think of death, and how the lack of conversation between patients, their doctors, and family members can lead to misunderstood goals of care, among other things: I think of… missed opportunities and misunderstandings and all kinds of things like in... They did a study recently and 29 to 30% of MD’s still think palliative care means hospice. And we still have lots of patients that we talk to that think hospice means we take away your food and your medicine till you die. And there’s a reason why they believe that… it’s because it was true 20 years ago. It wasn’t that hospice was doping people up and taking their medicine away because they were cruel, or didn’t know what they were doing, it was because people were referred to hospice within three days of their demise.
End-of-Life Healthcare Defined by Legislators
Just as during the Tier 1 interviews, Tier 2 participants were asked what they thought of when they heard “end-of-life healthcare.” As was the case during the Tier 1 interviews, participants typically mentioned two or more ideas when answering this question. Aligning with the Tier 1 respondents, they discussed: a diagnosis, a timeframe, the type of care a person receives, the location of care, planning for the future, among others. Timeframe and diagnosis were discussed: The last two years of life. If its natural causes, whether it be cancer… you know, not an automobile accident or something like that. There is this time period at end of life that is very intense about healthcare, whether you are 50 years old or 80 or 90 years old, that same proc… we all go through that process. If it’s a natural deterioration until death. Of course, depending on the physical health of the individual when they enter that timeframe, dictates a lot of what take place in that, in the length of time of it. So, the two years is arbitrary. The first thing that comes to mind is geriatrics, Alzheimer’s, dementia that sort of stuff. I guess it’s a wide range of things but I’m thinking you know when you know that the end is near.
Planning for future care and location of care were shared: How those approaching death confront the health care system and apparatus in the country or in their community, probably more specifically. I think… homes and hospices and the hospitals and nursing homes... I don’t… I don’t have a setting in mind.
The type of care a person receives was also mentioned: Well, I think of people that may be receiving hospice care. That’s more or less… they know it’s end-of-life care. I think of… there’s also end-of-life care that you don’t know it’s gonna be end-of-life. You know, they may be getting care, but don’t realize that it really is that imminent… That’s end-of-life care too. You know, there’s medical care, there’s emotional care, there’s physical care. So, I think it’s a little bit of everything. I think of palliative health care and hospice care. That’s what I first think of. I mean, everything from when a person gets diagnosed with some kind of chronic complex, or rare disease. From the day they get diagnosed, to the point that it becomes debilitating, and often leads into hospice and end-of-life. I mean that can last a year, that can last ten years, you may have Alzheimer’s for fifteen years. So, I naturally, that’s where I naturally… it’s the whole continuum. I don’t just think the last two weeks of hospice.
One participant discussed most of the five concepts: I think of end-of-life… so, there is either advanced age or a terminal illness. So, that is towards the end of time, and certain decisions have to be made. It also implies that the condition is not curable. That is why it is end-of-life. So, at that time it has to be decided whether the care is going to be given at home, or in the institutional setting… and that depends on the resources, the needs of the person, how dependent are they on care, are they bed ridden, in a wheelchair, and is there support at home? And then certain decisions have to be made about how aggressive the care should be, when does palliative care come in, when does hospice come in? Is there an advanced directive or a living will that outlines what the future holds for this person? Those are the issues I think along the lines of end-of-life care.
One of the main differences noticed throughout the Tier 2 interviews, was that they were more likely to share a personal experience when asked this question. Nearly half 44% (n = 4) of the respondents shared the experience of the death of a close relative when asked this question. This shows that a person’s personal experience with the death of someone could impact the way they view end-of-life healthcare, in either a positive or negative way. Unlike the Tier 1 participants, who were more likely to give a clinical answer of a type of treatment or place where the treatment takes place, goals of care, or time frame, Tier 2 participants were more likely to share a personal experience: Hospice. That’s the first thing that pops into my head. Yes, my grandfather was put on hospice care. He was already in the nursing home. It was very educational because my mammaw, she fought it for a very long time. Because she interpreted it to me as giving up… “You don’t care anymore, it’s over.” And they sat her down and sat my aunt and my dad down, and said, “No, this is what it really means.” (It’s) about comfort level, it’s not giving up, it’s another level of care. And when they educated and helped her with that, she understood. Because that’s not what I thought either. Hospice is like, “Well, we’re done.” And that’s not a fair characterization of it. But that would be one of the times when, when it kind of came close to home. I went through this with my mom. My mom passed away in 2018. She had lung cancer, so she went through those stages. We dealt with the palliative care, and the hospice care, and this, and things of that nature… so I’m pretty familiar with this. You know, you want people to die with dignity. I think of it as a relatively broad statement in that it can be both geriatric, and then also people my age… our age that have cancer and want to go do some hospice care. Having literally just gone through it with a family member, it’s an interesting process in that what do we do with life… and is life breathing, or is life the ability to get out and enjoy your family and friends, nature? Is it the ability to be cognizance? Is it awareness?
Discussion
Through this research an operational definition of end-of-life healthcare encompassing five main concepts was developed. The participants in both tiers of this study gave their own unofficial definitions of what end-of-life healthcare is to them, each highlighting various components they considered most important. They included: a diagnosis, a timeframe, the type of care a person receives, the location of care, and planning for the future, and most of the participants mentioned two or more of these. Each concept is open to interpretation and there is ambiguity, especially when attempting to specifically define end-of-life healthcare (Gysels et al., 2013).
The appropriate time to begin end-of-life care is typically when a person has been given a life-ending diagnosis. This may occur after days, weeks, months, or even years of treatment. A diagnosis of a terminal illness can include cancer, or any advanced illness that is incurable such as dementia, Alzheimer’s, or a motor neuron disease. Acute conditions that are life-threatening, such as an accident or stroke, are also considered diagnoses for end-of-life healthcare to begin (National Health Service, 2020). Participants felt that a diagnosis of a condition that was incurable or serious enough to bring about death in a given amount of time, was an integral part of determining when end-of-life healthcare begins.
Determining a timeframe for end-of-life healthcare was the most difficult of the five concepts to specify. According to the U.S. Federal Code, there are four different survival durations used to specify how long a person has to live. These include less than 6 months, less than 9 months, less than 12 months, and less than <24 months (Hui et al., 2014). This can be problematic in that it makes determining a specific timeframe difficult. Participants who discussed a life expectancy agreed that it can vary based on a patient’s diagnosis, the care they receive, and their goals of care. Generally, when a person is considered to have started receiving end-of-life healthcare is when it is anticipated that death is in the near future (Lowey, 2015).
Type of care included numerous concepts, but hospice care and palliative care were the two most common types of care reported by participants. According to the National Cancer Institute, these two forms of healthcare, along with supportive care, are given to people who have stopped treatments to control or cure their illness (National Cancer Institute, 2020). Additional types of care can include continued treatment, alternative medicine, or other specialized care that is provided to someone at the end of life (Lowey, 2015). As with determining a timeframe, the type of care a person receives is subjective to that individual and can be influenced by one or more of the other four concepts.
When a person is receiving end-of-life healthcare, there are several typical locations where it can be administered. Participants mentioned the hospital, the patient’s home, a caregiver’s home, in a nursing home, a long-term care facility, or in a residential hospice facility. Location was sometimes linked with type of care, goals of care, and timeframe. For instance, if a person is experiencing the last 2 weeks of their life and they want comfort care at home, they are more likely to be at their own residence or the residence of a caregiver. In comparison, if someone is highly symptomatic and needs medical intervention, they are more likely to be in the hospital.
Planning for the future occurs because being given a life-ending diagnosis can cause reflection on values and priorities when it comes to healthcare, and whether or not a person wants quantity or quality to take precedence. An assumption is that people want to avoid death at all costs, but studies have shown that maintaining quality of life is just as, or even more, important than simply living longer (You et al., 2015). Particularly if quantity diminishes quality. It is during the initial life-ending diagnosis that conversations around future treatment or comfort care can be discussed. It is important for physicians to explain all of the patient’s options, and to be clear about what is possible or to be expected (Stone, 2001). These conversations are different than advance directive completion or adherence. They are more focused on treatment options for a specific illness or condition. This is an area of healthcare where professionals play an important role in determining whether or not a patient wants aggressive treatment, or if they prefer other options (Karnik & Kanekar, 2016). Participants in this study felt that planning for the future dictated location of care and type of care.
An underlying theme of the operational definition of end-of-life healthcare was that it was meant to help a person live out their final days in a way that aligned with their values and goals. Leading institutes of medicine, including the National Cancer Institute in the United States and the National Health Service in the United Kingdom, state that the goal of end-of-life healthcare is to control symptoms and pain so that a patient can be kept as comfortable as possible (National Cancer Institute, 2020). There is also a goal to help a person live as well as possible until they die (National Health Service, 2020). This concept was reflected in many of the interviews as participants shared that often, a person’s end-of-life healthcare choices are driven by their personal goals of care.
Having an operational definition of end-of-life healthcare is essential to maintaining open lines of communication between patients and families, doctors and patients, policy makers and reform advocates, among others. Understanding what each party considers end-of-life healthcare is imperative to high quality standards of care and the protection of patient autonomy. This research has shown that even among physicians and other healthcare workers who specialize in this area of medicine, and legislators who are members of Tennessee’s health committees, there is not a singular definition of what end-of-life healthcare is. There is however, a larger, more complex operational definition that includes five main concepts. When considered together, they present a vast maze of what end-of-life healthcare encompasses. It cannot be defined in a simple, succinct definition, but must be tailored to each individual.
Limitations
Limitations to this study include the small sample size, historical events, and researcher bias. The sample size was small due to the nature of the study and the time frame it was conducted in. The historical events that occurred during data collection included a catastrophic tornado in Nashville and the COVID-19 pandemic. Researcher bias was a limitation because of the possibility of pre-conceived notions and personal motivations which could have influenced the data collection and analysis.
Footnotes
Acknowledgements
The author wants to thank all of the doctors, nurses, directors, legislators, and other professionals who took time out of their busy schedules to share their experiences. Without their willingness to participate in this important research, none of this would have been possible. The author would also like to thank Dr. Deborah Slawson, Dr. Martha Copp, and Dr. Roger Blackwell for their support and guidance through this research. And, to all of the Tennesseans and their families who are faced with end-of-life healthcare choices, it is because of them that this research was not only needed, but also important.
Declaration of conflicting interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.
