This is a guest blog post by Judith Schwarz, PhD, RN, and the Clinical Director of the not-for-profit organization End of Life Choices New York.
We recently heard from an emergency room physician who works in a New York hospital and she had some important advice she asked us to pass along. Doctors who are working long shifts in emergency departments (EDs) in New York State and trying to keep very ill patients alive have said they do NOT have time to have end of life discussions about options and choices - those discussions must have previously occurred, and a health care agent appointed. These are desperate times. Due to the threat of spreading the virus, visitors are no longer permitted in the EDs, Intensive Care Units, or in patients' hospital rooms in NYC.
Doctors want to know whom to call, the identity of your appointed health care agent and their phone number - in the event you are unable to make informed choices about end of life interventions. Does that person know your wishes about using aggressive life-prolonging measures? They also want to see a list of your current medications and written instructions about your decisions regarding cardiac resuscitation and/or intubation and use of a ventilator. This is particularly important for those suffering from dementia and/or other chronic progressive illnesses who cannot participate in treatment decisions. And clearly, there are different ED admitting procedures depending on the location of the hospital - whether in urban versus suburban or rural settings. As you may know, hospitals in New York City are now having to establish triage plans regarding how best to use such currently scare resources as mechanical ventilators.
Many of us are 'sheltering in place', and now is the time to have something good come out of all that closeness! Think about your wishes for the final stage of your life and tell your appointed agent; also write it down. It's also an important time to encourage other families to share their wishes. The Conversation Project has great information on how to begin these discussions. If you have access to a computer, download a copy of the NYS health care proxy form and/or the MOLST (Medical Orders for Life Sustaining Treatment) form. The MOLST form allows you to decide whether to forgo resuscitation, prefer comfort care, and whether you wish to remain in your home rather than being transported to a hospital. Keep a copy of the completed form, even if your physician or nurse practitioner has not yet been able to sign it. You can also add such choices as additional written instructions on your health care proxy form. Contact your primary care physician's office to see if they can help validate the MOLST form electronically. Note: You can also contact Alison Arden Besunder at firstname.lastname@example.org to arrange for remote notarization.
The saddest thing the ED physician said was that, due to the current COVID-19 medical crisis, sick and elderly people admitted to the hospital would have to remain alone, and may also have to die alone. Remember that you can always call our patient support number (212) 252-2015 and leave me a message with the best time to call you back. I will try to call you then, and answer any questions you have.
Stay safe indoors, wash your hands often, laugh if you can, and keep calm.
Thank YOU, Judy, for your post.