Palliative care is a recent specialty in medicine that was established in the second half of the 20th and early 21st century. In 1964, a landmark publication by Dame Cicely Saunders paved the way for the first hospices and the creation of the medical field of palliative care. At the time, much focus was on identifying the patient’s symptoms and curing the ailment. For patients who had no available cure, there was not yet a framework that would simply focus on relieving their pain and providing a comfortable environment for them during end-of-life treatment.
“Well doctor, the pain began in my back, but now it seems that all of me is wrong. My husband and son were marvellous but they were at work and they would have had to stay off and lose their money. I could have cried for the pills and injections although I knew I shouldn’t. Everything seemed to be against me and nobody seemed to understand. But it’s so wonderful to begin to feel safe again.” Mrs. Hinson, a patient, to Dr. Saunders. This quote is widely referenced within palliative care literature, an emblem of the whole principle of care within the specialty.
In her 1964 article, Dr. Saunders defined the idea of “total pain,” a concept that included not only physical symptoms but the emotional, social, and spiritual dimensions of the distress that patients were experiencing. She continued producing publications on this topic for decades, refining the notion of “total pain” and its unique challenges for clinicians. “In particular it is seen as a problem on the level of meaning, for such pain can be timeless, endless, meaningless, bringing a sense of isolation and despair.” The ideas in her works galvanized a major shift in how end-of-life care was performed. A lecture by Dr. Saunders inspired Florence Wald, dean of Yale School of Nursing, to found the first hospice in the United States in 1974. That same year, Dr. Balfour Mount, a surgical oncologist, created the term “palliative care” to distinguish it from hospice care. “While hospice falls under the umbrella of palliative care, palliative care can be provided from the time of diagnosis of a serious illness and concurrently with curative or life-prolonging treatment.” In 1990, the World Health Organization designated palliative care as a distinct specialty, and by 2006, it was officially recognized in the United States.
"If our goal is to ensure that each person who needs palliative care gets it, innovation is essential." Diane E. Meier, MD, director of the Center to Advance Palliative Care
Today, the necessity of palliative care is firmly established. As of 2019, 72% of hospitals with fifty or more beds reported having a palliative care team, and there were 7,619 board-certified palliative care physicians. The Center for Medicare and Medicaid Innovation has expanded access to services for palliative care, and several agencies have dedicated funding toward palliative care research. Still, there is further progress to be made. The Center to Advance Palliative Care (CAPC) states that the American healthcare delivery system’s continued “focus on disease-specific treatments, rather than on the needs of the whole person and their family, has resulted in unnecessary suffering, fragmented, burdensome—often futile—and costly interventions, untreated pain and symptoms, lengthy and repeated hospitalizations and emergency department visits, overwhelmed family caregivers, and clinician burnout.”
“Access to quality palliative care should be a fundamental and reliable aspect of the US health care system so that people living with serious illness can rely on us to identify, and relieve stress and suffering.” Diane E. Meier, MD
Currently, innovations in palliative care are not necessarily focused on new medical innovations but rather a nationwide improvement in access to care. Many areas of the country still need access to palliative care teams or nursing home services. The CAPC and The John A. Hartford Foundation (JAHF) worked as partners on a Tipping Point Challenge in 2021 that addressed three key areas of innovation in palliative care. The first area was building skills among non-palliative care specialties and disciplines that treat CHF, COPD, and cancer. Skilled communication about what to expect, expert control of symptoms like pain and anxiety, as well as support for family and other caregivers are vital parts of treatment plans in palliative care. However, to help everyone who needs that kind of care is beyond the capacity of the specialist palliative care workforce. CAPC and JAHF urged that medical and nursing schools throughout the country should teach these skills in their programs. The second area was improving systematic access to palliative care. Many patients suffer for weeks or months before finally their case is consulted by a palliative care specialist. The Challenge sought “bold ideas which address systemic issues that have stifled high quality care for this population.” Lastly, they sought to implement a population health approach to identify and address patients with serious illnesses and unmet needs, one that would screen every patient and family for their needs, identify those with unmet needs and connect them in a consistent and standardized manner.
The field of palliative care began to take shape when Dr. Saunders challenged the contemporary notions of treatment and care through her “total pain” concept that emerged from her unique experience as a nurse, social worker, and physician. Today, those in the palliative care specialty continue to push the field of medicine toward a whole-person approach to care, making innovations that will touch the lives of all of us who will one day need compassionate and understanding end-of-life care.
Thank you for reading,
Ashby Glover
Citations
1. Cicely Saunders. “The evolution of palliative care.” Journal of the Royal Society of Medicine 94, no. 9 (September 2001): 430-432. doi: 10.1177/014107680109400904
2. Cicely Saunders. (1964) “Care of patients suffering from terminal illness at St Joseph’s Hospice, Hackney, London.” Nursing Mirror 14 (February 1964): vii-x.
3. David Clark. “‘Total pain’: the work of Cicely Saunders and the maturing of a concept.” 25 September 2014. http://endoflifestudies.academicblogs.co.uk/total-pain-the-work-of-cicely-saunders-and-the-maturing-of-a-concept/
4. Cicely Saunders. “The symptomatic treatment of incurable malignant disease.” Prescribers Journal 4 (1964): 68-73.
5. Clark, “‘Total pain.’”
6. “Brief History of Palliative Care.” New England Journal of Medicine: Resident 360, 30 December 2020. https://resident360.nejm.org/content-items/history-of-palliative-care
7. “Brief History.”
8. “Finding the Next Wave of Innovation.” Center to Advance Palliative Care, 26 January 2021. https://www.capc.org/blog/finding-next-wave-innovation/
9. “America’s Care of Serious Illness.” Center to Advance Palliative Care, 2019. https://reportcard.capc.org/
10. “America’s Care.”
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17. Clark, “‘Total pain.’”