Hospice was created to bring hope and consolation to people at the end of their lives. But before it was adopted as a formal medical service, it was run by volunteers offering emotional, social, and spiritual comfort to patients in desperate need.
Over 50 years later, hospice volunteers still play a vital role in end-of-life care. Though their actions seem small, they have an enormous impact by bringing joy and solace to people during one of the most affecting moments of their lives.
Hospice cannot function without volunteers. Regulations laid down by the Centers for Medicare and Medicaid Services state that at least five percent of patient care must be provided by volunteers.
But beyond that, hospice volunteers play a vital role in the closing months of a person’s life. No one wants to feel forgotten. They need someone to listen honestly, to share a smile, and bring a little fun back into their life. Their families need someone to help shoulder the burden.
Volunteers also help healthcare and hospice providers by helping with back-office tasks. Organizations need someone to keep the office wheels churning, so they can continue providing high-quality care.
Parentis Hospice volunteers are central to our hospice program, offering companionship, arts and crafts activities, music and pet therapy to help keep patients engaged and active as long as possible.
Hospice volunteers are indispensable to the functioning of the organization and the quality of care it provides. They work directly with patients, but also behind the scenes to keep the organization running smoothly as possible.
Hospice volunteers might find the idea of working with patients intimidating at first, but it is an incredibly rewarding experience. After spending time with people in hospice, volunteers find their hearts and minds opening in unexpected ways. The warmth, excitement, and gratitude they see during their visits gives them a deeper appreciation of how kindness can transform a person’s life.
Patient visits can take any form. Some volunteers come and perform music. Others play games, work on puzzles, or do arts and crafts. Some read to patients or bring their pets, while others just come and talk.
Volunteers work at every level of hospice care. Their selfless dedication makes it possible for caregivers to continue providing comfort to patients and families during a very difficult period.
Regardless of what volunteers do, showing up and spending time is what really matters. Even though families visit as often as they can, hospice can still be lonely. Because of their illness, their world tends to shrink until it revolves mostly around nurses, doctors, and medical procedures. Volunteers are a chance for them to reconnect with their community, make new friends, and stay social.
Besides working with patients, hospice volunteers assist families and staff as well. No matter your background, there is always a valuable role to play.
Patients drive the nature of the relationship between patients and volunteers. As such, prospective volunteers should be caring, compassionate, and approach life with an open mind.
A good hospice volunteer is also resourceful. COVID-19 shut down most volunteer activities. Visitors were not allowed into assisted living facilities, and even people undergoing hospice at home could not receive guests for fear of infection. Rather than diminishing the need for volunteers, this made it even greater.
Creative strategies to keep in touch, like letter writing and virtual visits, made a world of difference, particularly during the early days of the lockdown. Though the patients didn’t always have the energy to reply, hearing from a volunteer pen-pal lifted their spirits immensely. Parentis Health’s volunteer correspondences were so welcomed, our coordinator found patients waiting by the door for the mail to arrive!
Hospice is the most robust form of palliative care. Unlike palliative care, which can be provided along with curative treatment and may begin at the time of diagnosis2, hospice is not a curative treatment. Hospice is an approach to care reserved for patients in the end-of-life stages, providing comfort care and family support after curative treatment efforts have been abandoned.
With hospice, the emphasis is on keeping patients as comfortable as possible, which greatly impacts the speed at which health care is delivered. Hospice agencies also provide a wealth of support to patients’ families, from advocacy to emotional support and beyond.
Despite its many advantages, hospice is beset with myths and misperceptions that contribute to its widespread underuse. Arguably, the most common idea is that hospice care is appropriate only in the last days of life.
Dying is a process, which can take anywhere from days to years. The belief that hospice is only “end of life” care deprives many of the necessary support they so desperately need. It forces those who are most vulnerable to go through a stressful ordeal of overtreatment and medically futile treatment.
The real-world consequences of this belief adversely impact patient care. Less than half of Medicare recipients who died in 2017 received hospice care did so late into their dying process. The median length of stay for hospice patients in 2017 was 24 days; conversely, the disease trajectory that allows a patient to avail hospice care is an expected decline in six months or less.
This belief cuts across sociopolitical and ethnic boundaries, resulting in far more families avoiding than embracing hospice care.
Hospice does a lot more than acquire medications quickly. It’s a support network, connecting patients, families and physicians with the services they need. Hospice agencies collaborate with the attending physicians and clinicians who have built a relationship with their patients and families.
For families, hospice can be a lifeline, ensuring they can reach care providers, nurses, doctors, clinicians, social workers, chaplains, priests, Imams, Rabbis whenever needed. Hospice care managers coordinate care within the Medicare Hospice covered benefits and outside the covered services.
Hospice care workers help families immensely with day-to-day activities, including showers, bed baths, conducting passive ranges of motion exercises, and supplementing supplies such as diapers, gloves, wipes, and other hygiene and personal care items. Medications, equipment, and treatment can be delivered within hours. There is no need for appointments or authorizations because hospice nurses are the eyes and ears of the attending physician and/or medical director.
Hospice providers also provide more education to the community as a whole; to patients, to families, to providers, and to other clinicians. Through continued education, hospice can become one of the choices presented to patients and families, promoting more honest and fact-based conversations about the goals of care.