This past holiday season, like every other, whenever I saw mint candies with red stripes, I thought of Juan.
When I met Juan, he had cancer and only a few months left to live. He was alone in a barren room in a nursing home. I’d been assigned as his hospice patient volunteer to offer companionship and comfort. Every time I visited, he was weaker. He became too tired to watch his favorite telenovela with me. Speaking became painful for him.
The one thing that cheered Juan up was mint candies. They soothed his fiery throat and reminded him of his childhood. I started bringing them in bulk. But one day when I arrived, candy in tow, Juan was gone. He’d died and been taken away during the night.
My shock and grief were followed by a surprising sense of peace. I knew that Juan hadn’t truly died alone. As he faded, we’d grown from perfect strangers into friends, sharing his final days. Sitting at the deathbeds of Juan and others, I saw how hospice care sustains human connection and affirms everyone’s worth no matter how long they have left.
Hospice is a holistic model of care that prioritizes quality of life for terminal patients and their families. It includes pain management, homemaker services, and spiritual and grief counseling. It’s often provided in patients’ homes. Hospices are required to incorporate volunteers, like me, into their care team. Volunteers help support patients’ well-being through activities like massage and art therapy.
To receive hospice care, a patient must have a life expectancy of six months or less. However, patients often receive hospice care for much less time — the average is 88 days. And more than half of patients who receive hospice are enrolled for 30 days or less. The delay in enrollment stems from complex factors, including denial about the approach of death and lack of awareness of hospice care.
With these short stays, quick access to hospice care is crucial. Time is of the essence for patients once they decide they want the supports of hospice before they die.
Yet as the pandemic has spread death — with 1 out of every 100 older Americans having succumbed to the virus so far — the line to access hospice care is getting longer. A growing number of hospices are putting patients on wait lists or turning them away entirely. Other hospices are shutting down.
A shrinking supply of hospice staff is a central cause. During the pandemic, working conditions, burnout, and low wages sparked massive nurse and health aide turnover. Nurses generally, and hospice nurses in particular, are underpaid. With hospices already experiencing staffing shortages before the pandemic, they could ill afford this exodus.
This problem is only projected to worsen. Estimates suggest that by 2030 there will be only one palliative care doctor for every 26,000 patients suffering from serious illness in the United States. And by 2040, the deficit of hospice and palliative care specialists could grow to reach as many as 15,900.
We can reverse this course. To do so, we need to rebuild our hospice workforce by paying salaries that reflect the difficulty and value of end-of-life services. We should also support hospice’s long-term future by increasing training on palliative and end-of-life care in medical and nursing schools, to counteract the scarcity of specialists.
We all deserve the supports available through hospice during our final days. Someone to manage our pain and comfort us. Someone to watch telenovelas and eat mint candies with us. And we need to better invest in hospice for this essential care to be here when it’s our time to go.
Rose Carmen Goldberg teaches at the intersection of law and health at UC Berkeley School of Law. Previously, she was a hospice patient volunteer and a government hospice policy analyst.