November is National Hospice and Palliative Care Month and as part of my graduate education in social work, I’ve been privileged to do my field placement hours this past semester and next, providing support for hospice patients and their caregivers. The hospice organization I volunteer with, Optum Palliative & Hospice Care, is a local arm of a national organization, owned by one of America’s biggest insurers, UnitedHealth Group.
Hospice care is available to patients at end of life as a Medicare Part A benefit, underwritten by the federal government. It is also available through private insurance, and through the Department of Veterans Affairs, which provides it in-house but contracts out with community organizations as well. Patients are eligible for hospice care when they have been diagnosed with a terminal illness or condition, and the prognosis of less than six months to live.
Halfway through my approximately 500-hour experience, I wanted to share with you some of my observations, because San Antonio is a unique environment for hospice care.
Growing up in the Northeast, where hospice care has made substantial inroads as a way for terminally ill patients to die in their homes, I was initially unaware that cultural barriers to acceptance still exist, particularly in a predominantly Hispanic community such as San Antonio. Research shows that Hispanics are the least hospice-friendly racial or ethnic group in the U.S., and part of the barrier appears to be a misunderstanding that it “helps you die,” rather than supports you and your loved ones during the dying process.
At the hospice organization where I volunteer, patients are seen by a multidisciplinary care team with regular visits from doctors, nurses, home healthcare aides, and social workers, as well as spiritual counselors on an as-requested basis. There is also a 13-month bereavement support process that works with loved ones before and after the patient’s death, anticipating needs and offering practical support.
Author Joan Didion, who experienced the death of her husband and her only daughter within one year, wrote that, “Grief, when it comes, is nothing like we expect it to be.” The same could be said of the dying process, and what patients and loved ones want to take away from it. This particular hospice prepares even its volunteers with thoroughness: a background check, drug screening and TB test, and then a cutting-edge, 12-hour training on the hospice experience, delivered by a world-class expert, JoAnne Chitwood.
It also works with the Dream Foundation, a highly-regarded California nonprofit that helps deliver end-of-life experiences for terminally ill patients with slim financial resources. (The organization has recently partnered with the VA to deliver veterans’ “dreams” as well.) I’ve been known to describe it as the “Make-A-Wish” foundation for adults. It’s been surprising, and a bit disturbing, to see how many patients ask for utilitarian items such as lift chairs, recliners, and air conditioning units to ease their final days. It seems like there should be a better avenue for patients to receive these things, while leaving patient “dreams” to fulfill something of a more profound or celebratory nature, such as a great dinner out with family and friends or a trip to a special place.
One patient’s wish for a tablet device for entertainment and distraction purposes enforced a growing sense that too many patients spend their days parked in front of televisions for lack of adequate options, and inspired me to contact Bexar Bibliotech, which I’d previously written about for the Rivard Report. I asked if we could connect hospice patients and their caregivers with resources from the all-digital library, many of which are available bilingually. Special Projects Coordinator Laura Cole and Community Relations Coordinator Carlos Sauceda have both been enthusiastic about the idea.
About a week ago, I was able to connect my first hospice patient with a Bibliotech device, loaded with special selections of particular interest and appeal to him. From a couch across the room I watched as the elderly patient clasped the e-reader to his chest, eyes closed in a state of bliss, listening to the glorious music of his favorite tenor, Mario Lanza. His wife snapped an impromptu photo and texted it to me, calling it “the picture of contentment.”
“This was magnificent!” he told me afterward. “I haven’t listened to such beautiful music in years.” Later that night, his wife emailed me more thanks for making the day so special for him.
I’ve learned a lot through this experience and the accompanying schoolwork about the importance of caregivers, who carry such a strenuous burden. The few hours a week in which a student volunteer can provide the caregiver with some respite to run errands or just spend some personal time away from the home turns out to be essential to the patient’s experience. Caregiving can unduly stress the provider’s physical and emotional health, and in turn affects the patient’s wellbeing as well. I now strive to make sure that all the caregivers I visit with take ample time to refresh and renew.
The patients and families I visit with weekly are from a range of socioeconomic conditions and life experiences. They also seem generally positive about the care they receive from the interdisciplinary team of providers. Just the other day I visited with a patient an hour’s drive outside of the city who raved about her doctor and nurse. While I was there, I spied a homegrown gift on the counter from the organization’s bereavement coordinator’s garden.
Simple things that improve the quality of life for dying patients and their loved ones appear to be the essence of hospice. I’d like to see the cultural reluctance to engage with it decline, the perception of what hospice can do for patients and their families to improve, and for more people to be able to receive the benefits of such coordinated care and support in the most difficult time of one’s life.