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On September 11, 2018 we held a panel discussion about dying in America, and whether we as a nation do a good job to care for those who have months to live. The conversation was hosted on “The Business of Health Care,” on Sirius XM Business Radio powered by the Wharton School, channel 132. My guests were: Holly Prigerson, PhD, Professor and co-director of the Cornell Medicine Center for Research on End-of-Life Care; Connie Ulrich, PhD, Professor of Nursing and Bioethics at Penn’s Perelman School of Medicine; and Philip Pizzo, MD, prior dean of the Stanford University School of Medicine and co-chair of the 2014 National Academy of Medicine report entitled “Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life.”
Our conversation centered around the fact that as a nation we can do much better at delivering seamless, compassionate care that honors people’s end-of-life preferences. One of the most difficult conversations professional caregivers have is acknowledging to a patient, and their loved ones, that there are no other options for extending their life. Professional caregivers are often concerned that it will depress the patient and their family if this news is delivered. However, research by the panelists shows the exact opposite. Surprisingly, once a patient understands there are no other options, they and their families plan for the remaining time they have left. This often times includes being in familiar surroundings (e.g. home and community) and around people they love. Knowing their condition and how much time they have left allows a patient to plan, establish goals, and oddly, provides hope.
The most important attributes a professional caregiver can provide a patient at the end of life are: time, accessibility, making a patient feel valued, and their undivided attention when they are with the patient. Unfortunately, our current fee-for-service health care system does a very poor job of rewarding professional caregivers for any of this. The panel concurred that this is an area that needs to be improved.
An important part of end-of-life care is advanced care planning. This is accomplished by talking to patients about what they want at the end of their life, which in turn allows caregivers to better provide it. Unfortunately these conversations do not occur as often as they should in our health system. Questions that should be asked but often are not, include: Do you want to be at home and around the ones you love? Do you want to participate in or attend a wedding? Do you want to see a family member graduate? The appropriate care in these instances, as identified in the advanced care plan, would be provided such that these goals can be achieved.
The last question I posed to the panelists was: Is there such a thing as a good death? All concurred that how we die is deeply personal, therefore how a person dies should be honored. This may mean less care, more comfort, being in familiar surroundings, and being around people the person loves. It would likely cost the health care system less as well.
The entire discussion on dying in American can be heard here: