Reading Nathan Gray’s recent opinion piece Op-Ed: Think you want to die at home? You might want to think twice about that hit a nerve. In this piece, Mr. Gray highlights the very real distress of caregivers as they attempt to care for their ill and dying loved ones. This is not new information. Though care of the dying has improved significantly since Congress passed the Medicare hospice benefit in 1982, the infrastructure of home services continue to hold chasms of gaps in support. Caregivers continue to struggle under the enormous burden of attempting to care for their dying loved ones without any financial, social, psychological and physical support.

Working in community palliative care has given me a front row seat to witness the huge holes in care that exists when seriously ill people attempt to be cared for at home. I didn’t always work in the community. For a long time, I worked in Ivory Tower institutions where care was delivered fully by a team of professionals. At the time, I was one of the loudest advocates for patients to be released from the confining hospital wards and back into their homes. Yet when I moved into home care, my opinion changed. The impact of walking through the doors of seriously ill patients’ homes will do that to an opinion. Looking into a caregiver’s eyes that says “I don’t know how I will face another day” will do that.

I met family members and heard their thoughts and worries. I saw the overwhelming financial stress break families. I saw caregivers dance with their attempts to care lovingly for their dying family member while trying to hold all the pieces together. Finally I was able to appreciate the full dimension of suffering. And that our healthcare system does not offer solutions.

All the buzz these days is to move care back into the home. Yet still our system continues to ignore the need for a platform to make this reality a success. I find it ironic that during this time of a pandemic infectious disease crisis, the advice if you are sick is to stay home. Yes, stay home sick people. Just don’t expect much in the way of healthcare support. Hopefully you have a trained, experienced caregiver who can watch over you night and day. If not, you are on your own.

Gray, N. (2020). Op-Ed: Think you want to die at home? You might want to think twice about that.