My passion for increasing awareness and learning about competent, meaningful, affordable, and comfortable care at the end of life has taken a new trajectory with some of the below information, coupled with some of my own foibles. Let’s unfold the history of end of life care in America, and how it’s been flipped on its head over the past century.
NEJM | November 1, 2012 | Dr. David G. Stevenson, PhD
This is a great history of the modern Hospice movement in our country, including graphic depiction of how much more exposure to, and acceptance of, dying with Hospice, and at home, there has been in the past decade. There is an audio portion to this article that runs for about 18 minutes, but is very instructive and helpful.
NEJM | August 19, 2010 | Jennifer S. Temel, MD, Joseph A. Greer, PhD, Alona Muzikansky, MA, Emily R. Gallagher, RN, Sonal Admane, MB, BS, MPH, Vicki A. Jackson, MD, MPH, Constance M. Dahlin, APN, Craig D. Blinderman, MD, Juliet Jacobsen, MD, William F. Pirl, MD, MPH, J. Andrew Billings, MD, and Thomas J. Lynch, MD
Shortly after Gawande’s New Yorker piece that led the way for his book, Being Mortal, there was a very interesting article, and editorial, in the NEJM, which showed that patients being offered early palliative care in the course of chemotherapy for terminal illness had improved quality of life as well as improvement in mood, and then lived longer with less aggressive care than the control group.
The accompanying editorial by Kelley and Meier (national leaders in palliative medicine at Sloan-Kettering), includes the conclusion that the findings offer
…an example of research that shifts a long-held paradigm that has limited access to palliative care to patients who were predictably and clearly dying. The new approach recognizes that life-threatening illness, whether it can be cured or controlled, carries with it significant burdens of suffering for patients and their families and that this suffering can be effectively addressed by modern palliative care teams. Perhaps unsurprisingly, reducing patients’ misery may help them live longer.
Our “Advanced Illness Consultants” have been trying to convince our hospital and community culture of this fact for some time, with progressively improving recognition of what they do so well. But they have had less avid response at the administrative and policy level. In our Ethics Committee meetings, our Palliative Care team often leads discussions over ways to implement more refined policies that will make their visibility more evident and seamless throughout the hospital. Besides patient and family fulfillment, there are important cost issues involved that also need to be discussed (a very revealing segment recently on Sixty Minutes titled “The Cost of Dying” emphasized many of these points).
The following reads are all from NEJM, the first three of which were in a single week’s issue. All are about palliative care, and specifically about discussions of the advance care planning (ACP).
NEJM | February 12, 2015 | Multiple Poll Respondents
This article is from the Clinical Decisions series in NEJM and is interesting because it is a case scenario with an optional approach to the ACP – the Primary Care Physician, the Oncologist, or the Palliative Care Specialist.
NEJM | February 12, 2015 | Dr. Philip A. Pizzo, MD, and David M. Walker, BS
This article is a Perspectives piece by the Co-Chairs of the IOM report: Dying in America. The project is described in more detail.
NEJM | February 12, 2015 | Dr. Justin Sanders, MD
This article is also a Perspectives paper describing some of the popular emphasis that has occurred over the past few months that has helped make ACP a topic of national conversation. The conversation has profoundly enthused my own passion for end of life discussions and opportunities to teach and model them.
NEJM | March 28, 2013 | Drs. Timothy E. Quill, MD, and Amy P. Abernethy, MD
This comes from NEJM a couple of years ago and you’ve likely seen it before. But I include it as an “add-on” because it anticipates some of the recent conversation in medicine by both contrasting and overlapping primary and specialist palliative care.
NEJM | June 26, 2014 | Drs. Deborah Cook, MD, and Graeme Rocker, MD
NEJM | May 3, 2012 | Drs. Daniela Lamas, MD, and Lisa Rosenbaum, MD
NEJM | October 9, 2014 | Danielle Ofri, MD, PhD
This fairly recent article is a wonderful piece and reminder about the importance of the little things at the end of life.