Hospice is almost always associated with imminent death—but it might not have to be that way. Petra Rantanen ('17), a double-major in Sociology and Pre-Health Studies, received The Vill Family Endowment for Excellence in the Nanovic Institute to travel to the UK to investigate the meanings people attach to hospice in light of one feature of the British hospice model: the option to continue curative care while in hospice. She recently wrote to us about her research:
The concept of hospice care is surrounded by ideas that hospice is only meant for people for whom death is imminent, that hospice is where people go when there is nothing more their doctor can do, and that hospice is the manifestation of giving up hope. This summer, I travelled to the UK to investigate the meanings people attach to hospice and the option of curative care in conjunction with care in hospice, or “concurrent care,” which is a feature of the British hospice model. My goal was to determine whether these meanings affect people’s use of hospice and concurrent care.
Past research has established the negative attitudes towards hospice. The links between meanings attached to hospices and curative care are less well-known, but Zhang and Siminoff (2003) emphasize the idea that hospice without available curative treatment amounts to “waiting to die” to some patients, while Temel (2011) showed that early access to palliative care (while the patient is potentially undergoing curative treatment) improves patient mood, quality of life, and survival. However, Cagle (2014) revealed that 62% of respondents of a survey in the US were unaware that curative care in conjunction with hospice is unavailable in the US, indicating that the option may have little bearing on the meanings attached to hospices. Cherny (2009) suggests that physicians are reluctant to refer patients to palliative care in the hospital, where they are still able to receive curative care, due to the connotation of suggesting palliative care as delivering bad news; this may indicate that even if curative care is available in hospice, physicians may be reluctant to refer patients to hospice due to the existing meanings attached to hospice. However, these studies do not consider how the cultural value systems of individual patients, family members, or physicians affect whether or not the availability of curative care significantly affects the meanings they attribute to hospice.
Over eight weeks, I interviewed seventeen physicians in London, including oncologists, palliative care physicians working in a hospital or a hospice, and general practitioners. Interviews covered topics including conversations about hospice and palliative care with patients, the physician’s and patients’ perceptions of hospices, and shifts in attitude towards hospices. In answer to my original research question, every physician I spoke with discussed the common perception that hospice is where one goes to die. Despite these common perceptions, though, physicians did point out that if the patient had some experience with hospice before it was recommended for them, they had a far more positive perception of hospice. Furthermore, patients who are in a hospice rarely want to leave; one physician said that the hardest conversations they have had are not about going in to the hospice but about leaving it. It is more difficult to discern the meanings attached to concurrent care, as it is such a norm in the UK. Still, many physicians noted that patients who are receiving concurrent care have a different attitude towards hospice than those who are not.
Over the course of my interviews, I became aware of further themes. Many physicians discussed the concept of “ceilings of care,” or the different levels of treatment patients can choose to receive (from oral antibiotics only to transfer to a hospital for acute care), and the various tradeoffs that hospices make when admitting a patient with intense active treatment. I also found considerable variation in vocabulary used by physicians; for example, the phrases “palliative treatment” and “active treatment” can be synonymous to one physician and very different to another. Furthermore, I noted that physicians’ perceptions of patient awareness of the option of curative care in hospice varied greatly. Finally, many palliative care physicians discussed their relationship with physicians of other specialties, in terms of inappropriate referrals to palliative care and ongoing communication between physicians.
These observations will become the basis of my senior thesis. With hospice care becoming increasingly relevant, it is important to address the negative meanings attached to hospice in order to prepare for the increased need for hospice services. My research will also have implications for policies surrounding hospice care in the United States, as programs in the US are beginning to experiment with making curative care available in hospice.
I was extremely fortunate to have a placement as a visiting researcher at the Cicely Saunders Institute at King’s College London and to work with Dr. Jonathan Koffman, a senior lecturer in palliative care and sub dean for postgraduate teaching in the school of medicine. Through my placement, I received valuable guidance on my project, exposure to the graduate level experience through classes at the Institute, and countless insights into the field of palliative care. I was also able to continue my working relationship with Dr. Ros Taylor, the Clinical Director of Hospice UK, who I worked with last fall as an intern at Hospice UK.
In addition to conducting research, I spent a portion of my summer volunteering at St. Christopher’s Hospice in London as their improvement advisor, interviewing patients and visitors on their experience at St. Christopher’s, and analyzing the data I collected. I am grateful for the time I spent at the hospice, both for the opportunity to improve my research design, interview, and analysis skills, and for the personal connections I was able to make with the people I interviewed.
I am extremely grateful to the Nanovic Institute for European Studies for making all of this possible. My experiences from this summer are invaluable to my professional development, as I plan to attend medical school and specialize in palliative care. Beyond the incredible insights I gained into the field through my research, volunteering, and professional connections, I left London inspired by the stories of how my interviewees chose their specialty and their passion for their work. I am thrilled to be able to contribute to such an increasingly important topic, and I am excited to see where it takes me next.
Cagle, J. G. et al. 2014. “Knowledge About Hospice: Exploring Misconceptions, Attitudes, And Preferences for Care.” American Journal of Hospice and Palliative Medicine 33(1):27–33. Retrieved February 18, 2016 (http://ajh.sagepub.com/content/33/1/27.short).
Cherny, Nathan I. 2009. “Stigma Associated With ‘Palliative Care.’” Cancer 115(9):1808–12. Retrieved February 18, 2016 (http://onlinelibrary.wiley.com/doi/10.1002/cncr.24212/full).
Temel, J. S. et al. 2011. “Longitudinal Perceptions Of Prognosis and Goals of Therapy in Patients With Metastatic Non-Small-Cell Lung Cancer: Results of a Randomized Study of Early Palliative Care.” Journal of Clinical Oncology 29(17):2319–26.
Zhang, Amy Y. and Laura A. Siminoff. 2003. “The Role Of the Family in Treatment Decision Making by Patients With Cancer.” Oncology Nursing Forum 30(6):1022–28.