Week 5: 2/8-2/14-Historical and Contemporary Roles

The concept of palliative care is a relatively modern connotation and much of its history relates directly to hospice care. Hospice care traces back to as early as the 12th century where “hospices” were maintained by religious oversight and provided aid and care to the ill or dying (PCCSA, 2012). This concept continued on and off until the 19th century in the United Kingdom and France where religious orders cared for both the terminally ill and those who were deemed incurable (PCCSA).

Palliative care as a specific specialty came to the forefront in the 1950’s when Dr. Cicely Saunders recognized the need for an interdisciplinary team to manage the “total pain” that a dying person experiences (Loscalzo, 2016). By 1960, the concepts of modern palliative care and hospice were still met with resistance. In 1963, Saunders came to the United States from London to give a series of lectures to the Yale School of Nursing regarding hospice and palliative care (Connor). In 1969, Dr. Elisabeth Kubler-Ross published a book discussing an approach to the care of dying individuals that included “respect, openness, and honest communication” (Loscalzo). She recognized the need to listen to the needs of patients in their final stages of life and driving care based on this. In 1973, the United States hosted its first Hospice center located in Connecticut (Connor). While the concepts were in play for centuries, the actual term palliative care was coined in 1974 by Dr. Balfour Mount as a means to avoid the negativity often surrounding hospice care. He focused on a holistic approach to patient care which included “physical, psychological, social, or spiritual distress”’ (Loscalzo). Furthermore, he delineated between hospice care by concentrating on individuals with “chronic or life-limiting diseases” (Loscalzo). While palliative care and hospice are two separate focuses, their historical foundations often go hand in hand. It is therefore important to note that the National Hospice Organization formed in 1978 after a series of national meetings (Connor, 2007). This organization would later become the National Hospice and Palliative Care Organization (Connor).

In the late 1970s to early 1980s the Center for Medicaid and Medicare Services (known then as the Health Care Finance Administration) initiated a project that studied the efficacy of hospice care in the United States (Connor, 2007). This was significant as the findings led to the creation of the Hospice Medicare Benefit in 1982 (Connor). This benefit was aimed at providing reimbursement for hospice care providers, however the initial benefit was only provisional and did not become permanent until 1985 (Connor)

Jumping forward to 1997, we saw the release of a report from the Institute of Medicine titled “Approaching Death: Improving Care at the End of Life” (Field & Cassel, 1997). This document recognized the inadequate state of end of life and palliative care management in the United States health care system, primarily with the advent of ever developing technology designed to delay the onset of death (Field & Cassel). Other key stakeholders and advocates around the same time included the Robert Wood Johnson Foundation and the George Soros’ Open Society institute (Loscalzo, 2016). These key players promoted the transition of palliative care from obscure to mainstream (Loscalzo).

By 2004, the National Consensus Project for Quality Palliative Care produced a set of guidelines for palliative care (Loscalzo, 2016). These guidelines continued to outline the care provided by palliative care in addition to further delineating between hospice and palliative care (Loscalzo). All of these movements led to a significant increase in palliative care programs from 632 in 2000 to 1,240 in 2006 (Connor, 2007).

The specialty continued to advance when in 2006 the American Board of Medical Specialties and the Accreditation Council for Graduate Medical Education officially recognized the medical sub-specialty of “Hospice and Palliative Medicine” (Loscalzo, 2016). At this point in the historical timeline, there were already 57 fellowship programs nationwide that focused on palliative medicine. In 2008, the American Board of Medical Specialties gave their first certification examination in palliative medicine (Loscalzo).

Transitioning back into current events, the primary issues still thwarting the progress of palliative care include the need for training for health care professionals, national policies, and availability of adequate pain management (Lucas, N.D.).

Photo Credit

Header photo: http://www.stjh.org.uk/about-us/our-history

References

Connor, S. R. (2007). Development of hospice and palliative care in the United States. OMEGA, 56(1), 89-99. doi: 10.2190/OM.56.1.h

Field, M. J., & Cassel, C. K. (1997). Approaching death: Improving care at the end of life. Washington, D.C.: National Academy Press

Loscalzo, M. J. (2016). Palliative care: An historical perspective. American Society of Hematology Education Book, 2008(1), 465. doi: 10.1182/asheducation-2008.1.465

Lucas, S. (N.D.). Palliative care: Issues and challenges. Retrieved from http://www.who.int/3by5/en/palliativecare_en.pdf

Palliative Care Council South Australia. (2012). History of palliative care. Retrieved from http://www.pallcare.asn.au/about/history-of-palliative-care

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3 thoughts on “Week 5: 2/8-2/14-Historical and Contemporary Roles”

  1. The concept of providing palliative care is certainly not a new one and has been around for centuries. As the medical field evolves, so should this specialty. I am surprised at the inadequate state of the management of this specialty. I really thought that the specialty of palliative care was similar to other specialties when it came to structures or models but I am learning this isn’t the case. I believe that education is definitely the key to transforming palliative care for the better. I found a great article outlining a sustainable model of care with education opportunities for palliative care to utilize (1). Hopefully you will find it useful in your quest to shed more light on the issue. Legislative efforts to promote palliative care have really lagged. It will be interesting to see where the Patient Centered Quality Care for Life Act and Palliative Care and Hospice Education and Training Act will go (2).
    1. Quill, T. & Abernethy, A. (2013). Generalist plus specialist palliative care- creating a more sustainable model. New England Journal of Medicine 368, 1173-1175. doi: 10.1056/NEJMp1215620
    2. Parikh, R., Kirch, R., Smith, T. & Temel, J. (2013). Early specialty care- translating data in oncology into practice. New England Journal of Medicine 369, 2347-2351. doi: 10.1056/NEJMsb130546

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    1. Perhaps it is that I am in my middle age, but I see the palliative care movement, even though the concept has been around a long time, as being in its infancy. I don’t find this surprising. As I age, I find decades to make change as being somewhat lightning speed. Behavior change, whether individual or at a cultural level usually takes a very long time, generations often. Take with that, the way palliative care makes us more focused on end-of-life issues, and this death-denying culture digs in its heels. At the conclusion of World War II, most Americans died at home of infections or other acute illness; 40 years later, less than 20% died at home. (1) Decades ago, we did not have antibiotics and other measures to “save” us. Now, through advances in disease management, we have both medicines and technology to delay the inevitable. I see it every day and call it “dying by inches”, the slow trajectory downward over many years from congestive heart failure, chronic lung disease or dementia. So, we have swung the pendulum from not being able to do much to intervene, to being able to do everything to intervene. Is it any wonder we want to continue in that vain? In addition, there is a medical profession that, as Atul Gawande puts it, “has succeeded because of its ability to fix. If your problem is fixable, we know just what to do. But if it’s not?” (1, pg. 8) Given all that, turning the ship around to focus on “high touch, low tech” is going to take a long time and require a seismic cultural shift. All hands on deck!

      1. Gawande, A. (2014). Being Mortal. New York, NY: Henry Holt.

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  2. Thank you for the informative history on the role of palliative care. It is interesting that this area has been around for so long and it is still not well understood or received. I must agree that increasing education is the right place to start. Educating healthcare personnel would better enable us to educate to public. One study found that while Geriatric medicine fellows felt it was their role as the provider to help patients prepare for end of life, most felt ill-prepared to do so (Cao et al, 2015).

    Cao, Q., Lee, T., Hayes, S., Nye, H., Hamrick, I., Patil, S., & Steinweg, K. (2015). Are geriatric medicine fellows prepared for the improtant skills of hospice and palliative care? American Journal of Hospice and Palliative Medicine, 32(3) 322-328. DOI: 10.1177/1049909113517050

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