Patient Voices Blog

I had to search for his advanced care documents after he passed. What I found was paperwork showing that he had cashed out all his retirement while waiting the 3 years it took to get approved for Social Security Disability. I found credit card statements with thousands of dollars of debt on them, one still with my Mom on it. Also, documents that needed to be sent in for life insurance to be given to my sister and me, signed, sealed, stamped ready to go. But, they were never mailed, just lying in his file of other unorganized paperwork.

I recently celebrated my seventy-fifth birthday with family. While some of the celebration was virtual, some of the family were able to visit me. During this time, the conversation turned to the present situation of Covid-19. It was a perfect time to discuss care planning with my children, grandchildren and even in the presence of my great grandchild. I have given my backup person, as well as my alternate backup person, copies of my wishes and I remind them to refer to the forms that I have given them. Sometimes I can see the reaction of my bringing it up again. I assure them that is important to my wellness and to decrease their level of anxiety in the event they have to share my wishes and requests in making decisions.

I was terrified of the possibility of dying because that is the probable outcome for someone like me with cystic fibrosis. But with the health challenges I have faced in the past, having numerous instances of coming close to dying, how much greater should the fear be this time? The statistics for outcomes for this pandemic are pasted on every news channel. The mortality rate is known. Whereas, when my lung collapsed requiring 3 surgeries, when I developed bacterial pneumonia with necrosis, and when I was on oxygen 24/7 suffocating due to the volume of mucus in my lungs from an infection last year, I didn’t realize the magnitude of danger.

In the wake of a global pandemic, we have been advocating for policymakers to leverage every mechanism they can to ensure that affordable, quality health care and safety net supports are equitably available to those who need them. We also want to keep you informed about steps that Congress and policymakers are taking during this public health emergency to protect the health and well-being of patients and families nationwide. As of today (March 19) Congress has passed two bills in response.

It’s no secret that here at NPAF our vision is to bring person-centered care everywhere. We want it to be demanded by all patients and caregivers and integrated into all care settings. This vision is why we’ve been such strong advocates for community-based palliative care. The foundation of palliative care is based on person-centered principles: communicating with empathy; involving caregivers; and acknowledging that patient values and preferences are a fundamental part of delivering quality care. For this reason, NPAF supports state and federal legislation aimed at raising public awareness of palliative care and making training available to clinicians who treat people with serious illnesses.