Hudson Valley Hospice: A Model in End-of-Life Care
by Loren Talbot
After Char Fraske retired from teaching, her “heart found its way to hospice,” and in 2016, she joined the volunteer training program at Hudson Valley Hospice (HVH). Her involvement with the hospice started with her doing therapy-dog work—she even once brought her horse Toby to the home of a housebound patient. Fraske received additional training to become an end-of-life doula through a partnership between the hospice and INELDA. After serving in this role over the recent years, Fraske says her relationship to her doula work is steadfast. “I see it as a gift. I see it as a blessing. I see it as an honor….To be invited into a patient’s life at the end of their journey is something you cannot explain.” Cultivating an environment where this transformative work can happen is at the core of the doula program at HVH.
Hudson Valley Hospice has always been a model of quality end-of-life care. Located close to the Hudson River, on the border of Hyde Park and Poughkeepsie in New York, the hospice’s roots were seeded over 40 years ago. In the late 1970s community leaders from both Dutchess and Ulster counties came together to serve elders in the region with the creation of a referral service for local care providers, as well as to provide spiritual support to patients in the neighboring counties. This led to the creation of the Hospice Association of Ulster County and the Hospice Information and Referral Association of Dutchess County, two of the earliest hospices in the country. Over time and with expansion, the organizations grew and eventually joined together. HVH was formed in 2013, and it is still growing to meet the needs of our rapidly aging population. This past year they implemented a palliative care group practice called Hudson Valley Medical Health Choices.
The National Hospice and Palliative Care Organization (NHPCO), recognizes that there are close to 5000 hospice providers nationwide, yet not all offer the same services and quality of care. Hudson Valley Hospice is one of the few in the state that has end-of-life doulas within its team of volunteers.
Running the volunteer program is self-described “long-hauler” Peggy Kuras. As the Director of Volunteers and Complementary Therapy, Peggy works to recruit, train, and place her team of 95 patient-care volunteers, 44 of whom are trained as end-of-life doulas. In 2018, CEO Michael Kaminsky read an article about end-of-life doulas and INELDA in the New York Times, he brought the article to Kuras and her colleagues. Together they worked to implement a program at the hospice with INELDA. All hospices are regulated to provide a volunteer training program, which individuals must complete in order to serve patients. But the doula training at HVH added value for the hospice and its clients. “We had a large number of people who took the (initial doula) training,” said Peggy. “It was a great training, and it really got us started on having our volunteers feel a level of expertise and comfort doing the sort of model with the three parts of legacy work, vigil planning and the vigil, and then the bereavement follow-up.”
Volunteer Robert Cornett had always felt drawn to end-of-life work. Having studied different cultural attitudes on death and dying in graduate school forty-years ago, he felt the call after he retired from a career in corporate human resources work. In 2019, he joined the volunteer training at HVH and subsequently its doula training. “Through empathy, deep listening, and caring, doulas can walk alongside the dying and their families as a trusted companion, and help them create and hold a positive and loving space during their final weeks and days,” he says. “This goes beyond the traditional hospice volunteer role, which focuses on more general companionship and support to patients and family caregivers.”
These sentiments are mirrored by volunteer doula, Zela Rodriguez, who has served with HVH since 2017. She has a private practice focusing on energy medicine and intuitive spiritual counseling through which she has supported clients and their families for over 20 years. “Both the end-of-life doula and hospice volunteers receive comprehensive training at Hudson Valley Hospice and are prepared with compassionate presence and patience. I believe the additional training the end-of-life doulas go through really differentiates them from other hospice volunteers. End-of-life doulas have an awareness when accompanying (the dying) during the last days of life; ministering supportive care for patients and their families; supporting the end-of-life journey with confidence; and having skills in vigil planning and legacy projects.”
That comprehensive approach to care runs throughout the agency. Kaminsky has sustainably grown the hospice from serving around 100 patients daily and having 85 staff to serving 375 patients daily with a staff of 250 people—as well as serving nearly 20% more Medicare patients over the past six years. New York State recently approved HVH’s application to construct a 14-bed inpatient facility that will also accommodate residential and respite hospice patients, as well as care for pediatric hospice patients. This growth has also allowed for expansion of the music therapy program (there is also pet therapy, as well as therapeutic touch and aromatherapy). Kaminsky recognizes the benefit of the doula program: “The end-of-life doula program speaks to the core values of hospice, and the more readily the CEOs and executive staffs understand that, the easier it should be for them to acknowledge the importance of starting a doula program. They can have all the volunteers in the world, but if they don’t take advantage of the volunteers’ time and expertise and teach them end-of-life doula philosophy, to a certain degree—I think the volunteers get wasted.”
Volunteering has been different since COVID-19 entered our world, but the program was halted for only a short period. Approximately 85% of HVH’s patients are either at home, assisted living facilities or adult homes, so with the proper protocols, volunteers were able to continue their work in private residences. “They are critical parts of the team,” says Kuras. “I know a lot of agencies haven’t allowed volunteers to go in, so I feel very glad and proud of our agency that they deemed it important and safe enough to do. If I can send a social worker in, why can’t I send a volunteer in with the same call?”. The hospitals and nursing homes HVH works with have not yet opened up to volunteer care, however conversations are in the works as guidelines are changing regularly.
For doulas, COVID-19 has provided a different opportunity. Prior to the pandemic, the majority of the volunteer time was spent sitting vigil for people in the hospital, as well as for people in nursing homes who didn’t have family members. Since sitting vigil was not possible in those settings, the doula program focused on legacy work and pre-vigil planning. Kuras shares, “There are some amazing volunteers out there who are so creative and so willing to give of themselves. And inevitably, when I think, ‘Oh, wow, look what they’re doing. This is such a challenge,’ they are so fulfilled by it that they want to keep at it. I’m in the lucky position to be able to facilitate a patient, family, or caregiver getting this wonderful service.”
Both Cornett and Fraske have been two of those amazing volunteers who creatively work with HVH patients. Over a year ago, Cornett and a 95-year old client, created a bound book over a six-month period that highlighted important events in his life. The book also had a section that shared the client’s life philosophy and hopes for the future. “I do not see this as work,” writes Cornett. “I see it as a gift that leaves me with gratitude, appreciation, and wonder for the preciousness of life.” After a brief hiatus, he is now back to volunteering in person wearing double masks and eye protection. And Fraske recently created a “Memory Box” after a mother’s death to cancer left behind two children, ages five and three. “We read the book entitled The Memory Box, and created amazing and decorative boxes that contained photos and small memorabilia that represent their mom. We read another book, A String of Lights, and made hearts of favorite photos to hang from a string of heart-shaped lights, to be used as a night-light in their rooms. We also created dream catchers to catch any bad dreams and then spoke about how their mom would help protect them at night.”
Death, as we know, is still a hard conversation for so many. As Kaminsky notes, “I don’t think there’s any magic bullet or one simple solution that we haven’t thought of yet that will make people become more easily accepting of the benefits that hospice can bring to their final months.” But it is clear that HVH works to break down myths associated with hospice by providing community education through three staff educators who work throughout the region.. “You don’t have to have a DNR, and you don’t have to give up your doctor, (we) tell them what hospice isn’t….It’s your choice, your choice on how you want to die,” he says.
Hudson Valley Hospice aims to ensure that whatever a patient’s choice may be, it is supported at every level. By having volunteer end-of-life doulas as part of the care team, they are setting a standard for end-of-life care. “It is crucial and transformative to offer practical pieces leading up to dying, death, and the immediate post-death time period to the patient and their family,” says Rodriguez. “Easing death anxiety within the family and/or community and imparting skills to meet the most important needs of this time period with confidence. It is a humbling experience to be witness to someone’s journey, and it is an honor to be a member of the Hudson Valley Hospice care team, who are all supportive and inclusive.”