November is a big month. Besides that very big thing that happened on the 5th, November is National Hospice and Palliative Care Month, National Home Care and Hospice Month, National Family Caregiver’s Month, National Alzheimer’s Disease Month, National half-a-dozen-different-cancers-including-pet-cancer-awareness Month, Worldwide Bereaved Siblings Month, Long-Term Care Awareness Month, . . . D’ya think they could have spread out the issues a little so we could focus attention one by one?
Oh, and just for grins, it’s also National Peanut Butter Lovers Month, and – of course – National Gratitude Month. That’s a great place to focus after all – on Gratitude.
I (and I expect I’m not alone) am sometimes discouraged by the seemingly glacially incremental expansion of advance care planning, hospice, and palliative care in the face of so much need. For 25 years, since I moved into this field, I’ve heard repeated invocations of “By the year 2030, 1 in 5 Americans will be over the age of 65” as a rallying cry to marshal more resources, more services, more supports for our aging population. And yet, within hailing distance of that milestone year, we’re still falling short.
And yet, when I look back a bit further – to 50 years ago (!) – the progress is astounding. Fifty years ago in April, I walked home from middle school with a gaggle of friends to be greeted on our front porch by my mother and brother, both with faces of ash. My father had had a massive stroke. It didn’t kill him, but it left him profoundly disabled, and our family devastated.
After several months in inpatient rehab, he came home. We had some DME – I recall a bedside commode – and we had some grab-bars installed. But there was no skilled Home Health, not even basic home care for a patient in his 40s, no nonmedical caregiver services, no accessible transportation, no accommodation for people with disabilities (the ADA was 16 years away). There was no grocery or meal delivery, no Depends, no nurse advice line let alone a patient portal or telehealth – home answering machines were even a rare novelty. There was precious little mental health counseling and a heap of stigma around it. There was barely a concept of “caregiving” or “caregiver burden,” let alone any resources to help my mother and her teenage children cope. It wasn’t even until the fall of the year that the Equal Credit Opportunity Act passed, making it possible for my mother to have a bank account or credit card in her own name. And when my father came to the end of his life 5 years later, there wasn’t even hospice yet.
So from that standpoint, wow, we’ve come a long way, and I am profoundly grateful for the ongoing, often thankless, very hard – and yes, glacially incremental – work of so many over those 50 years to address the needs of people with serious illnesses and disabilities and those who love them more comprehensively. I’ve been privileged and humbled to be part of that work over 25 years, and on the receiving end of it more than once during my own cancer treatment and several big surgeries, illnesses, and recoveries among my family members, and indeed several end-of-life journeys and deaths made much easier by hospice.
I don’t know what’s in store for palliative and serious illness care with the new administration, but I do have hope that the issues we are all working on are sufficiently universal and bipartisan, sufficiently human, that progress will continue. I know that I, our team here at CCCC, our Board of Directors, our many members and colleagues, and the entire healthcare community of California will not give up, and we will not go back.
So, as we celebrate National Gratitude Month, take a moment to say an out-loud thank you to those around you and know that we are all standing shoulder to shoulder in this good work toward the vision of a future where people can live their best lives possible during serious illness, where conversations about serious illness are part of everyday life and palliative care a part of everyday healthcare.