Marian Krawczyk
Imagine yourself in the following scenario. You’ve been living, possibly for years, with the advancing symptoms of a serious illness. Maybe more than one. You become ill enough to require hospitalization, probably not for the first time. Perhaps you have lived through a previous critical episode, or several, and through medical intervention have recovered at a lower baseline. You and your family may expect this cycle to continue indefinitely. You may or may not have had anyone tell you, in plain language, that your disease is terminal. Or, while you are aware, you don’t really think that this particular hospital admission could be your last. Or perhaps you suspect it might be, but you want to “fight” for life no matter what, or even because you don’t want to disappoint those who love you. Or maybe you don’t have much awareness at all, struggling instead with delirium or advancing dementia.
This illness trajectory is the most common end of life scenario in the Global North. Consequently, hospitals are filled with patients like this imaginary “you”; nearing end of life and repeatedly hospitalized for a range of common but critical symptoms associated with age and disease. But the hospital is not only a place we increasingly use as we age. It is also, for most of us, the most likely place where we will die. [4] So while on the surface it may sound contradictory, one of the primary functions of hospitals is to mediate how we die. This, ideally, requires the skills of specialist palliative care.
Palliative care was first developed in North American hospitals in the mid-1970s. It was designed to transfer the philosophy and practices emerging from Cicely Saunders’ free-standing UK hospice model for cancer patients. These included a focus on quality of life, open communication about diagnosis and prognosis, comfort rather than curative efforts, relief of physical and emotional suffering, facilitation of patient autonomy, and help with bereavement, all achieved through a multi-disciplinary approach. [5] Advocates define contemporary palliative care as a set of compassionate, flexible, individualized, and responsive medical practices for individuals with life-limiting illness, which is also able to address a range of complex health system issues. It meets the person-centred care needs of an aging multi-morbid population who are used to consumer choice and patient autonomy, includes families in the circle of care, solves concerns about resource use within an overburdened health care system, and educates individual medical practitioners who are trained within a biomedical mind-set to keep patients alive at all costs. It is also seen as a way to facilitate acceptance, meaning, and self-fulfilment during the later stages of the disease process, all the while receiving expert pain and symptom management and thereby enabling people to live meaningfully until they die, with dignity. [6,7]
That’s the promise. The reality is that the end of life is often … complicated.
Let’s return to the imaginary “you”, now hospitalized and receiving specialist palliative care – admitted to an inpatient unit, or with a palliative care consultant as part of your care team. In the midst of prognostic uncertainty described in the above thought experiment, no one is completely sure if or how you might benefit from further clinical investigation and interventions. Not knowing often translates to the mentality of “if we can then we should”. Clinicians may cautiously frame the purpose of your admission as “tweaking” or “tuning” you up, even categorizing you as “a work in progress”. Whilst suspecting you might be in the last weeks or days of life, palliative clinicians may yet suggest aggressive interventions to alleviate your symptoms. They may even offer (or you may demand that they offer) radiation, chemotherapy, experimental drugs or surgical interventions so as “not to give up hope”, to see someone “one last time”, because it is your “right”, or most powerfully of all, in the name of “quality of life”.
Your palliative clinicians know that these interventions may enhance your quality of life and enable you to live longer, even if you are very sick. But they also know that offering these treatments means that you may have more symptoms, thereby requiring further interventions. They may then struggle to know when to withdraw or change your treatments, even those with waning efficacy, based on concerns that you may suffer from less than optimal symptom management and quality of life. Continuing the interventions, however, raises clinicians’ concerns about medical futility, side effects, continued hospitalization, a prolonged dying process, and/or providing you with false hope. Behind the scenes they may be asking one another if they are extending your dying process or causing you to suffer – and they may not agree on the answers.
Due to aggressive treatments, you may enter a liminal zone where you are not medically stable for discharge. Nor, as a result of continuing treatments, are you understood to be actually “dying”. This is an ambivalent time, where you are at a greatly increased risk of death, although when remains uncertain. You have become an example of “ambiguous dying syndrome”. [8] Adding to it all, your family may have divergent understandings about the likely outcomes of your care, or there may be disagreement about who will be responsible for you if you are able to be discharged. Or you may not have anyone to help with your care at all. You are now a substantial problem from an administrative and medical perspective. In spite of all the effort and expertise of multiple professionals and specialists in end of life, defining and mutually agreeing on the purpose of your care may remain a moving target. This means there is a good chance that you will not be considered “dying” or “at the end of life” by any hospital staff until shortly before you die. Consequently, even if you are lucky enough to receive specialist palliative hospital care, there is a significant possibility that you may die without dying.
Complexities in hospital dying are not only a result of prognostic uncertainty. They are also shaped by the organizational mandates of hospitals as bureaucratic systems designed to efficiently manage a range of public health concerns, including end of life. Consequently, while hospital administrators and policy developers are concerned with ethical patient care at the end of life, they also champion palliative care with the expectation of cost savings accrued by decreasing length of stay or reducing resource use associated with terminal hospitalizations. Hospital-based palliative clinicians therefore necessarily deliver care within an institutional environment powerfully shaped by standardization requirements for rapidly moving patients through the hospital setting. Yet as the focus of hospital palliative care increasingly centres on acute physical symptom management, stabilization, and rapid discharge, a bureaucratic model of task-based care is championed, where clinicians are rewarded for adopting system requirements.
Assertions that palliative care has become medicalized (focused on biomedical physical symptom management) and bureaucratized (focused on professionalization and organizational mandates) in an era of increased prognostic uncertainty are not new. [1-3] These critiques identify how hospital palliative care primarily focuses on proactively attending to physical pain with little or no focus on the emotional, social, or spiritual complexities of dying. Yet medicalization and institutionalization have extended the reach of palliative care, providing real and significant benefits to many. Similar to the scholars I have cited, I have little interest in collapsing my discussion about the challenges of contemporary palliative care provision into a binary morality tale.
What I am suggesting is something slightly different; that these complexities are, in part, shaped by the success of palliative care. In evolving over the last 40 years into an established medical speciality, palliative care has expanded well beyond the discrete concerns of a good death for cancer patients. Advocates and practitioners now assert the benefits of palliative care early in the disease process to improve quality of life for anyone “with a life-threatening illness” and “applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life”. [6] Current hospital palliative care practices are both a response to, and lead, this ongoing evolution. This is done in the compassionate pursuit–and ability–to enhance seriously ill patients’ quality of life. However, in widening the scope of practice in both prognostic breadth (more disease profiles) and depth (earlier intervention), there must be an equal distancing from the origin story of hospital palliative care as necessarily focused on end of life–even as it continues to care for the dying.
So the next time you consider your dying, consider also the paradoxes we generate through banding together in the face of death. In the case of hospital palliative care, we may be providing substantive benefits while also simultaneously increasing the number of symptoms at end of life, further troubling the boundaries between living and dying, and even at times facilitating death without dying.
References:
[1] Clark, D. (2002). Between hope and acceptance: The medicalisation of dying British Medical Journal. 324(905)
[2] James, N., & Field, D. (1992). The routinization of hospice: charisma and bureaucratization
Social Science & Medicine, 34(12), 1363-1375.
[3] McNamara, B. (2004). McNamara, B. (2004). Good enough death: autonomy and choice in Australian palliative care. Social science & medicine, 58(5), 929-938. DOI
[4] Broad, J. B., Gott, M., Kim, H., Boyd, M., Chen, H., & Connolly, M. J. (2013). Where do people die? An international comparison of the percentage of deaths occurring in hospital and residential aged care settings in 45 populations, using published and available statistics. International Journal of Public Health, 58(2), 257-267. DOI
[5] Mount, B. (1976). The problem of caring for the dying in a general hospital: The palliative care unit as a possible solution. CMA Journal, Vol 115, July 17, 1976.
[6] World Health Organization. (2014). WHO definition of palliative care.
[7] Marie Curie (2016) What are palliative care and end of life care?
[8] Bern-Klug, M. (2004). The ambiguous dying syndrome. Health & Social Work, 29(1), 55-65.
Marian Krawczyk is an anthropologist and Lord Kelvin Adam Smith Fellow in the School of Interdisciplinary Studies at the University of Glasgow. She is also an affiliate of the University’s End of Life Studies Group. She conducts ethnographic research on end of life care in hospital settings. Her broader research interests include using social science theorizing to inform clinical practice change and the history of medicine, particularly in relation to palliative and end of life care.