Thursday January 19, 2017
“Hospice isn’t about death, it’s about living. Living and service. It’s the Vermont way, isn’t it?” says Roberta MacDonald, a seven-year hospice volunteer with the Visiting Nurse Association (VNA) of Chittenden and Grand Isle Counties. MacDonald, like fellow South Burlington volunteers, Helen Head and Janet Miccolo, has dedicated herself to that service. These women are only three of over 300 VNA’s hospice trained volunteers who provide a wide variety of support to hospice patients in homes and at the VNA Respite House in Colchester. MacDonald, Head, and Miccolo each speak to the gifts of hospice, both in the care it provides to patients and the opportunity it gives volunteers to make a genuine difference in another person’s life.
The decision to become a hospice volunteer is usually an inspired one, for Miccolo, it was personal as well. She relates, “I lost my husband to cancer in 2010 when he was only 56. That experience, while extremely painful, also taught me there is a beauty and grace to dying. I knew I wanted to help others in some way.” Miccolo, who is currently in the midst of VNA’s 11-week training provided to all hospice volunteers, says her involvement has been invaluable, “It’s a way to broaden the experience of empathy for others.”
Head, Vermont Representative of District Chittenden-7-3, has been a hospice volunteer since 2007. Her inspiration happened when she was executive director of Project Home, now HomeShare Vermont, where she says she was moved by several remarkable volunteers at the agency. “One of them stood out as a particularly self-reliant, dedicated woman who went out of her way to help others. She was a single, retired elementary school teacher who brought breakfast to her disadvantaged students long before there was a school breakfast program,” remembers Head. When this volunteer was diagnosed with a fast-growing cancer, she received care at the former Vermont Respite House location in Williston. Head recalls, “It was there that she was able to accept all the care and warmth that the Respite House is known for - allowing herself to be taken care of, perhaps for the first time in her life. She reveled in that care and died a peaceful death.”
Representative Head said that woman reminded her of her own 94-year-old mother, also a retired school teacher and extremely independent. “A big part of my becoming a hospice volunteer is providing the care that I hope others will give my mom, if I can’t always be there to give it myself.”
An unexpected flight delay at the Philadelphia airport started Roberta MacDonald on the path to becoming a hospice volunteer seven years ago. A busy marketing executive at Cabot Creamery, she spent the delay talking with a couple who volunteered at the Respite House. In describing that impromptu connection, MacDonald says “Their compassionate stories ‘sold’ me on volunteering.” She began in the Respite House kitchen for three years before taking the VNA training course and expanding her hospice volunteer efforts. MacDonald says the experience has taught her greater humility, adding, “Being around families, staff, and residents who are facing death is an honor.” She notes, “What I’ve learned about hospice is that death doesn’t have to be painful, lonely or filled with anxiety or fear.”
There are many, not familiar with hospice, who do not hold MacDonald’s viewpoint. For them, sometimes the word hospice brings to mind images of sadness, anxiety, and a feeling of giving up. When hospice is mentioned, it is often because someone we know is dying, decidedly not a happy subject, and one many would rather avoid, as the topic is uncomfortable, and for some, frightening. Enter the VNA, who is committed to changing the conversation around death and dying in Vermont.
According to the VNA, the state of Vermont is ranked 46th in the country in hospice utilization. Although the VNA’s Hospice and Palliative Care Services cared for nearly 700 individuals in 2016, many more in Chittenden and Grand Isle Counties faced the end-of-life experience without the benefit of hospice. Thus, the VNA is working to change the perception that choosing hospice somehow means giving up.
A state-wide study commissioned by the VNA’s Madison-Deane Initiative (MDI) suggests that misconceptions and a lack of understanding on the part of patients, or reluctance among some healthcare providers to discuss end-of-life care, are contributing to people not receiving the hospice benefits to which they are entitled. MDI, the educational arm for VNA’s End-of-Life Care services, was created in 1997 to educate the general public and medical professionals about quality care at the end of life. For example, Medicare, Medicaid and most private insurance have a hospice benefit available to anyone who is diagnosed with a life-limiting illness.
“Hospice is patient-centered care that focuses on the unique physical, emotional and spiritual needs of the individual. When care is focused on the person and not the illness, patients experience a better quality of life and can sometimes live longer than expected. Symptoms and pain are managed, allowing people to live as fully as possible focusing on what is most important to them,” said Tara Graham, executive director of VNA’s Hospice and Palliative Care Services.
A multidisciplinary team provides hospice care at the VNA including physicians, nurses, LNAs, social workers, chaplains, bereavement counselors, and trained volunteers. Family and friends are an integral part of the hospice team, receiving guidance and support with the caregiving and decision-making process. Hospice services are provided wherever a person lives. Whether it’s a private home, an assisted living or skilled nursing facility or at the McClure Miller VNA Respite House in Colchester, the state’s only residential hospice, care is provided in the setting that works best for the patient and their family.
As Graham related, “If more people truly understood what hospice care is all about and how it improves quality of life for patients and their loved ones, I believe most would choose this option. Who wouldn’t want additional care and support at such a vulnerable time?”
Charlotte Paul, a South Burlington resident and VNA RN case manager on the community team sees clients in their homes. The intimate, one-on-one nature of the work is what drew Paul to a career in hospice and palliative care following her graduation from the UVM College of Nursing and Health Sciences. She says, “I get to see what’s of value and importance to people by seeing photos on the wall, or how they naturally interact with loved ones, or seeing family rituals and traditions.”
Hospice provides individualized care tailored to each person’s unique goals and values. Comprehensive medical care is overseen by the VNA’s hospice medical director and carried out by a highly-skilled nursing staff. In addition to symptom and pain management, hospice services may include personal care for hygiene, housekeeping and meal preparation, medical equipment such as wheelchairs and hospital beds, 24/7 on-call support and education for loved ones. Visits from the VNA’s chaplains and hospice choir, the Noyana Singers, bring spiritual support and comfort. All medications, durable medical equipment and care related to the terminal diagnosis are paid for under the hospice benefit. For uninsured patients, generous community and corporate donations to the VNA ensure care is provided to anyone in need regardless of ability to pay.
While the work is medically-complex and can be emotionally challenging at times, for the VNA’s hospice staff, the rewards are great. “I connect with people in such a beautiful way every day. I get the honor of supporting them through the most difficult time in their lives. I know I’m doing what I’m supposed to be doing,” shared Paul. This is a common sentiment voiced by many on the hospice team who see the work as both a passion and a calling.
This same passion is evident by the many volunteers, who come from all corners of Chittenden and Grand Isle Counties. According to volunteer coordinators Nancy Morse and Joanna Thomas, the talents shared by these volunteers run the gamut from gardening, meal preparation, therapy dog visits, music and massage to transportation, reading and baking. But, by far the biggest support volunteers provide is a warm presence - a listening ear, a hand to hold, a word of encouragement, a hug - the important and intangible things that provide comfort to people in the final chapter of their lives.
Two long-time champions of hospice care in the community are South Burlington residents Pam MacPherson and Pat Myette. The two, who together have nearly 50 years of experience in the field, play an integral role in training and mentoring new volunteers. Myette recounts, “The joy and excitement of facilitating a new class of hospice volunteers is a bit like the first day of school. Like-minded individuals gather to begin an 11-week journey, not really sure where it will take them or how it will end! It requires dedication and commitment from everyone involved. The outcomes are always positive and reassuring.” She describes seeing the growth and discovery each person makes about themselves and about those around them, adding, “The comment we hear most often is, ‘This was a life-changing course for me.’”
Of the work itself, Myette explains, “The hospice philosophy embraces the whole person, not just the disease which brings one to hospice. This leads one to take a much broader look at life and its meaning. It also makes one realize there are many ways to deal with a problem or a crisis. Our clients are the best teachers.”
MacPherson, who took the hospice volunteer training in 1985, says, “The past 31 years of involvement with end-of-life care have been deeply meaningful. Whether volunteering myself, training and supporting generous-hearted hospice volunteers or sitting vigil at the bedside of the dying, my own life has taken on greater meaning and my gratitude for the blessings of my life has become ever-present.” She recently published Vigil The Poetry of Presence, a book emblematic of her hospice experiences. Available at local bookstores and at vigilpoetry.com, it speaks to the feelings of many hospice volunteers; that the work is life changing and affirming.
The VNA notes that their hospice services do not end when the patient passes. On-going support for loved ones during the grieving process includes one-on-one meetings with a bereavement coordinator, support groups for adults and children, and Camp Knock-Knock, an annual three-day camp for families who are dealing with grief and loss.
“Hospice isn’t about dying; it’s about living as well as you can for as long as you have. It’s about making an informed decision to focus on the quality of your life when treatment is no longer effective. It’s a courageous decision’” says Graham.
MacDonald, who now spends her volunteer shifts working at the new McClure Miller VNA Respite House in Colchester, adds, “Serving families who have loved ones in the Respite House allows me to afford them some relief. It’s a tremendous privilege to be part of someone’s journey.”