2023 marks Hospicare’s 40th Anniversary! All year long we will be honoring 40 years of care while working to ensure the future.
We have an important announcement for our community!
40 years ago, a group of concerned citizens, seeing a need in our community, formed Hospicare as a 501(c)(3) nonprofit organization.
Ever since that day, our community has helped keep it going, making it possible for Hospicare to provide tender hospice nursing and counseling care, palliative support, and bereavement services to thousands of people in this region.
Today there are challenges–powerful system and economic forces–like exploding healthcare staffing costs, for-profit hospice providers that make huge profits by providing less care, inflation, and the pandemic’s disruption of the healthcare system.
Today there are also wonderful opportunities for friends and supporters of Hospicare to ensure a strong future of care for all who need it.
In this, our 40th year, we ask for your participation to help us tell our inspiring story and help us strengthen Hospicare:
Share your story – Are you a volunteer, grateful family member, or staff member with a story to tell? We would love to hear from you. Fill out this form or call Sara Worden at 607-272-0212.
Follow us on social media and like or share our posts!
Become a volunteer – Next training begins in February!
Donate – As the area’s only nonprofit hospice, we rely on the generosity of donors like you. Donate today or contact Emily Hopkins about including Hospicare in your Planned Giving.
Swim – 2023 marks Women Swimmin’ for Hospicare’s 20th swim!! 300+ amazing, brave, strong, resilient, badass women will swim across the lake to raise money for patient and family care. Will you be among them, or will you sponsor a swim?
Attend an event – Stay tuned for ways to honor this milestone!
With the 40th anniversary of the founding of Hospicare coming up in 2023, I thought this might be the perfect time to offer a little history of the organization, with a focus on its residence.
Recognizing an unmet need
In the early 1970s, soon after Elizabeth Kubler-Ross’ best-selling book On Death and Dying was published in 1969, there rose up a national conversation about the advantages of home care for the dying over treatment in institutional settings. In Tompkins County, the county’s Health Planning Committee convened a group of concerned citizens and others involved in the health care community to discuss local programs for the terminally ill. The group discovered there were no services in the area that focused on the issues of the dying. In response to that vacuum, Nina Miller and Anne Costello co-founded Hospicare in 1981 to meet the needs of terminally ill patients in their homes. Then, in June 1983, Hospicare was officially incorporated as a not-for-profit organization.
Initially, the Hospicare’s board hired just one nurse to provide information and support services to terminally ill patients and their loved ones. As the program grew, more staff and services were added. In 2002 the agency changed its name to Hospicare and Palliative Care Services of Tompkins County, Inc. Today the organization’s 40 employees and nearly 100 volunteers serve patients and families in both Tompkins and Cortland Counties.
A first in the state
In the early 1990s, the idea of a residence was born. The intent was to make available three new services: respite assistance for home caregivers who find the strain of caring for a dying person momentarily too great; transitional care for terminal patients who are being moved from hospital to home care; and a home for those who are dying but cannot be cared for in their own homes.
There was a roadblock, however, to opening one: New York State law, at the time, didn’t allow for residential hospice facilities. And so, Hospicare staff and volunteers lobbied Albany legislators to change the law. They succeeded in getting legislation passed that allowed “the provision of hospice care in a hospice residence … to provide hospice care to between three and eight patients at one time who otherwise do not have a suitable home or caregiver in order to receive hospice case in their own home.”
Opened to patients in 1995, Hospicare’s Nina K. Miller Hospice Residence (named after the agency’s founder and first director) was the first certified freestanding residential facility in New York State. It sits on more than 11 acres on South Hill in Ithaca and offers six private rooms with views of the extensive gardens, pond, and countryside, meals, activities, and staff on site 24 hours a day.
Services at the residential facility
A recent snapshot of care in the facility: One patient, a mentally alert widower, enjoys taking slow walks in the residence with his walker and a volunteer at his side. He tells stories about his life—his struggles and his accomplishments. His grown children visit nearly every day to sit with him and talk for a bit. In quiet moments, he gazes out at the chipmunks and birds that populate his balcony. Another patient, with advanced dementia, was frightened at first when she was brought to live at the residence, but now she is often relaxed and cheerful, enjoying the warmth of the aides and nurses and volunteers, enjoying having lotion rubbed into her feet, enjoying the soup lunches and the comfortable bed. Another patient, who has a painful condition that seriously limits her mobility, is grateful for the constant care, the pain medication, and the careful attention that is paid to her various food allergies and aversions. Every patient is visited regularly by the spiritual care coordinator, Edie Reagan, and by Hospicare’s medical director, Dr. Lucia Jander, as well as by social workers.
The hospice way of thinking is to provide pain management, symptom control, and emotional and spiritual counseling in a warm, supportive environment via a care team, both for patients living in the Hospicare residence and for patients living in nursing homes or their own homes. Care for patients’ families and other loved ones is also a big part of hospice. Advice, help with planning, medical education, and bereavement support are all mainstays of Hospicare’s work.
Financial considerations
The residential unit is a private-pay facility that is separate from any other institution in the region. While private insurance, managed care providers, Medicare, and Medicaid will pay for the medical services provided, residents pay for the room, board, and custodial care, which is currently set at $350 per day. But there is a generous sliding-scale, and Hospicare never turns away patients for inability to pay. In fact, Hospicare provides so much charitable care and fee reductions that it relies heavily on gifts from the community to make up the difference each year. It is generous donations from individuals and foundations that make it possible for Hospicare to offer bereavement services to the community and hospice care for all who need it, regardless of finances.
Jane Baker Segelken, MA, MSW, is part of the Social Work team at Hospicare & Palliative Care Services. 607-272-0212; hospicare.org
by Jane Baker Segelken, MA, MSW, part of the Social Work team at Hospicare & Palliative Care Services
With planning for Hospicare’s Women Swimmin’ in full swing now, excitement for the event is growing. This year the event will be in person with all its splash. Joan Brumburg and Ann Costello, two of the event’s original creators, were happy to sit down and reflect on what they both acknowledge as the best family-focused feminist event in Ithaca.
“If you identify as female you can swim,” Joan said, adding that the opportunity given to women to come together with a common goal of supporting a vital, well-loved agency is very powerful. For some participants, the reason to swim is deeply personal — a family member or friend may have received services from Hospicare. For others, the event offers the perfect opportunity to accomplish a challenging goal. “It takes a bit of daring to swim in the lake,” Joan said.
Joan should know what courage it takes to swim. When she turned 60, 19 years ago, Joan had her physical with Ann, a local physician, who asked her what she wanted to do that she hadn’t yet. Joan replied she wanted to swim across the lake, and Ann said she’d do that with her. “We decided to turn the swim into a fundraiser for Hospicare,” Joan said. They thought they’d get 25 others to swim with them and maybe raise $5,000. “That first year 126 women swam, and together we raised $54,000 dollars,” Ann explained. Since that first event, Women Swimmin’ has raised more than $5 million for Hospicare.
Women Swimmin’ is a fundraising event that helps sustain the nurturing attention that Hospicare & Palliative Care Services gives to patients and their loved ones at any stage of a life-limiting illness and/or following a death. The annual event raises funds and provides information and education about the agency and its mission in a manner that is inclusive, fun, and consistent with Hospicare’s respect for all people. Because of the generosity of corporate sponsors, every dollar raised goes directly to patient care.
“We do this because we believe in the mission of the organization,” Ann explained, adding that they see how it helps family, friends, and in her case, patients. “Our goal is to make sure the agency has what it needs.”
Swimming with a personal goal
The power of the event can’t be understated. It’s a group of people that are united with a common, often deeply personal goal. Women Swimmin’ captures one of the things Ithaca is known for: the tradition of athletic events that support local agencies. The lake in all its glory is the perfect venue for a big summer happening.
While only women can swim, individuals of any gender can participate. Joan’s husband and son have been swimmers-escort boaters and volunteers with other tasks. Ann’s son has boated. Musicians play music to welcome the swimmers back on land. The Brous family, of Ithaca Bakery fame, has generously provided bagels, fruit, and beverages to all swimmers and volunteers since year one. And many other businesses contribute goods, services, and money.
This year, Ashley Mungiello is looking forward to “watching the sun rise over the lake as I think of how lucky I am to have had the most incredible father for the last 40 years.” A14-year participant in Women Swimmin’, she knows first-hand what it means when others say it’s a family affair. Ashley started boating with her father while her mother, sister, and friends swam across the lake. Every one of them had a personal connection to Hospicare, and even more so now; Ashley’s father died peacefully last summer receiving support from Hospicare’s team of caregivers.
For those who don’t swim or boat, an alternative called Go the Distance! makes the event even more inclusive. Individuals — regardless of age or gender — set an activity or service goal in support of Hospicare. Whether one is walkin’, knittin’, bikin’, pickin’ up trash, etc., the goal and outcome are the same: support of compassionate care in our community! For example, Joan is walking her Westie at least 150 miles in July and August.
Four ways you can still participate:
Women Swimmin’ — held this year on Saturday, August 13 from 6:00 a.m. to noon — is a total team effort:
Go the Distance – Set an activity or service goal in support of Hospicare
Be a Support Boater – Sign up to assist swimmers across the lake
Donate
Volunteer
For more information and to sign up to volunteer go to womenswimmin.org or call Kimari Johnson at 607-272-0212.
Also, check out this informational video that captures the spirit of Women Swimmin’:
By Jane Baker Segelken, MA, MSW, and part of the Social Work team at Hospicare & Palliative Care Services
Jane Segelken, MA, MSW
With the new year upon us, one of the kindest favors we can give the important people in our lives is information on the kind of care we wish to receive if we become ill or incapacitated. Letting them know our care plans and wishes in advance is a true act of love. Doing so takes away some of the burden and stress by allowing them to focus on us without the preoccupation of making decisions we haven’t discussed with them.
For anyone over the age of 18, advanced care planning is the process that allows us to make decisions about our future health care. It is a way of providing guidance for decisions that may have to be made when we are unable to make and/or communicate them on our own. The preferences are noted on legally recognized documents; then the choices are communicated to family/friends and health care providers who are appointed to be the decisionmakers.
While we often think about advanced care planning as part of end of life, there are times when you might be unable to make decisions because you are taking medications that make you fuzzy headed or are in severe pain that prevents you from being able to focus. Regardless of whether you are needing someone to assist in an emergency or at the end of life, having someone who knows your wishes almost guarantees you’ll be treated the way you want. Without these legal documents, decisions about your care may be made by healthcare providers who know nothing about your values.
Medical Decisions: Choosing Your Proxy and Talking About Your Wishes
When thinking about who you will have as your proxy, also known as an agent, it’s important to select someone who will honor your wishes. While many people choose a partner/spouse or child, they may not be the best ones to make the difficult decisions. What is key is that the proxy be able to determine the kind of care you receive based on your wishes not theirs. Others who can act on your behalf include a friend, lawyer, or someone in your social or spiritual community. Also, name an alternate proxy. Be sure to ask the people you want to appoint as your agents in advance to ensure they are comfortable with the process.
Make sure you have a deep, detailed, and honest conversation with your appointed agents about how you want to be cared for in a medical emergency or at the end of life. Talk about your thoughts, beliefs, and values so your agent can make the kind of decisions you would if you were able. It’s also important to talk about your decisions with your loved ones and your physicians so they can partner with your proxy. The Five Wishes and My Living Voice programs are two excellent resources to help guide you through the process.
Medical Decisions: The Documents
A Health Care Proxy is a legal document that designates the person who will make health care decisions only if you are unable to make them yourself. Because it is difficult to know all the choices that will need to be made, it is important to appoint someone you trust and who knows your core values; make sure he or she hears details about your wishes that go beyond what you have written on the proxy form. Keep the original at home; give copy of the completed document to your appointed agent (proxy), your alternate agent, your primary medical providers, and your attorney if you have one. While some people also prepare a Living Will, it’s important to remember that is not a legal document.
A Medical Orders for Life Sustaining Treatment (MOLST) form outlines your wishes for the end of life in the event you cannot make this decision yourself. This form is filled out with and signed by your physician and reviewed at least every 90 days. If you do not have a proxy, the MOLST will guide medical decisions. If you do have a proxy, this document can guide their choices on your behalf.
A Do Not Resuscitate Order (DNR) determines what life sustaining measures, if any, you would like if your heart has stopped beating and you are not breathing. While a DNR can stand alone, it is also a part of the more comprehensive MOLST form.
If you need help connecting to resources, or ideas for how to start this process, please contact Hospicare & Palliative Care Services at 607-272-0212 with any questions or visit their website at hospicare.org.
*This article originally appeared in the Cortland Standard on January 27, 2022, as the first of a 12 column series devoted to topics relating to hospice and Hospicare called “Let’s Talk Hospice”.
UPCOMING ADVANCED CARE PLANNING EVENT
Having the Conversations & Organizing Your Info March 15, 5:30 – 7:00 pm via Zoom
For help with advanced care planning, attend Having the Conversations & Organizing Your Info, an upcoming webinar with Dr. Lucia Jander and the Hospicare & Palliative Care Services’ interdisciplinary team and hosted by the Cancer Resource Center. For more information about this and other event, visit our event calendar.
My name is Dr. Lucia Jander. I am the medical director for Hospicare & Palliative Care Services. You may know that Hospicare provides hospice, palliative care, and grief support to people living in Cortland and Tompkins counties, but did you know that we also recently started a new program training medical residents?
Since May of 2021, Hospicare has been working with Dr. Janette Lee of Cayuga Medical Center (CMC) to train a new generation of doctors in the Internal Medicine Residency program. These young doctors are doing their Geriatric Rotation at Hospicare.
Dr. Lucia Jander speaks with Dr. Priyesh Thakurathi, a CMC resident participating in the Geriatric Rotation at Hospicare.
My own professional interest in hospice came from an elective rotation in my residency. There is no formal requirement to have a hospice experience, but clearly it is very helpful for future internists in the community to understand these issues.
Let me explain the difference between hospice and palliative care: Hospice is a subset of palliative care for people who are at the end of life, generally with a 6-month prognosis. Palliative care can be delivered for several years before patients qualify for hospice. It is a special care for people with severe and chronic illnesses and can be given concurrently with curative care. The goal of palliative care is to help with symptom management, allow for open communication, and improve a patient’s quality of life.
During this semester-long rotation, CMC residents spend time in a long-term care facility, perform home hospice visits, come to our hospice residence, and are introduced to working in an interdisciplinary health care team. The goal of the rotation is to develop knowledge, skills, and the interpersonal communication needed to provide effective and compassionate care to patients receiving our services. Residents gain a broader understanding of the difference between hospice and palliative care.
During the Geriatric Rotation, CMC residents learn ways to help patients stay at home, improve their quality of life, and help them understand their illness, which may result in decreased hospitalizations or trips to the emergency room. I think it is important to remind trainees that 99% of patients’ lives are spent outside of the hospital; this may seem an obvious statement, but when residents are in the middle of their training, they are seeing the worst 1% of people’s lives when they are in crisis-medical misery. My hope is that the outpatient geriatric rotation helps CMC resident’s understand what matters most to their geriatric patients and ways to improve their quality of life.
Dr. Priyesh Thakurathi, a CMC resident meets with a patient at the Hospicare residence.
My primary goals are to teach trainees to understand their patients’ priorities (which may be vastly different from the healthcare team’s priorities) and help them recognize how much social factors influence patients’ lives – much more than our medical interventions.
CMC residents become incorporated into the Hospicare team. They join our nurses and social workers on their workday. The more exposure they have to Hospicare, the higher likelihood they will appreciate the help hospice provides for their patients, give prompt referrals for those who will benefit from hospice and palliative services, and stay in the community as primary care practitioners starting next July.
We are very glad to be able to train the next generation of doctors!
Hospicare is pleased to announce that Sara Worden has stepped into a new role as Director of Development and Community Relations! Sara has more than ten years of experience in community-facing service, relationship-building, and event coordination here in our region, the last three years here in Hospicare, where she has cultivated valuable relationships with providers and human service partners.
Sara has a unique and authentic vision for a future where Hospicare is more interconnected with our community and its values, and grounded in a place of gratitude and hope. Sara says “I’ve loved working at Hospicare and I’m excited to serve our community in this new capacity! I look forward to strengthening our relationships in the community to ensure a long lasting and thriving organization that provides kindhearted care to Cortland and Tompkins counties. Don’t hesitate to reach out at any time with questions or ideas for collaboration!”
Hospicare & Palliative Care Services and the Cancer Resource Center of the Finger Lakes (CRCFL) both share a common goal to be accessible to diverse populations throughout our community. CRCFL supports people living with and affected by cancer and Hospicare provides end-of-life care and grief support. Both are nonprofits serving several counties in central New York.
Throughout the year, we’ve connected faith leaders with our resources through programming such as webinars, and promotional outreach via digital and print materials. Perhaps most valuable, are the two Community Conversations that we hosted with faith leaders. Our goals were to listen to the needs of the faith leaders and to help bridge the gap between faith and healthcare.
“Hospicare is proud to be a part of the ecosystem of organizations committed to a better, more just world, from health care to human services to the arts to the environment and so many more. That ecosystem – so vital to our survival as a people and as a planet — is strengthened when organizations collaborate” said Joe Sammons, Executive Director of Hospicare.
Kim Pugliese, Executive Director of the Cancer Resource Center of the Finger Lakes (CRCFL) and Joe Sammons, Executive Director of Hospicare & Palliative Care Services in the CRCFL Healing Garden.
Our organizations were fortunate to have Aleah Thomas, Diversity and Inclusion Programming Assistant at CRCFL leading the project. Aleah provided the glue that we needed to keep momentum through the year.
“I am so grateful for this opportunity to collaborate with Hospicare’ said Aleah. “It has been so rewarding to work together to achieve the same goal of reaching underserved communities.”
Together through this partnership, we have reached out to dozens of faith communities throughout Tompkins and Cortland Counties and we look forward to these relationships deepening.
Kim Pugliese, Executive Director of CRCFL said “We are so grateful to both Aleah and Hopsicare for the opportunity to collaborate on this outreach project. The opportunity to be more inclusive and reach populations who wouldn’t traditionally think to connect with us for support is invaluable. I know from personal experience how hearing “you have cancer” can make the floor drop out from under you. We want to make sure that NO ONE faces cancer alone….and that everyone can have access to resources to make that journey less overwhelming or isolating.”
It is our hope that these initiatives are only the beginning of a long lasting relationship between our organizations and communities of faith.
An Introduction to Hospicare and the Cancer Resource Center of the Finger Lakes with Kim Pugliese and Joe Sammons.
We would love to share more information with you and your congregants! We are happy to speak briefly during your in-person or virtual services during your announcements period. If live engagement is not feasible at this time, we are happy to send brochures for your bulletin or send digital materials to include in your e-newsletter. If you would like us to connect with your organization, please contact us.
For more information on our organizations you may visit crcfl.net and hospicare.org. Our teams are ready to serve you!
Hospicare & Palliative Care Services welcomes Natalie (Jenereski) Daffinee as our newest member of the Board of Directors. Natalie’s term began in June.
For the past three years, Natalie has served as the Associate Director of Social Media Strategy at Ithaca College. She graduated from IC with a degree in television-radio. Prior to returning to her alma mater, Natalie worked as a Digital Public Relations Strategist at a PR agency in Tennessee and was a broadcast journalist in Chattanooga and Binghamton. When she’s not working, Natalie enjoys playing tennis, cooking, and going on hikes with her husband, Tyler, and their dog!
Natalie has served on Hospicare’s Development & Community Relations committee for the past two years, and has provided valuable input into marketing and communications strategies for the agency.
“My husband and I recently decided to put down roots in Ithaca, and I was looking for some ways to get involved in the community that we both deeply love and appreciate,” says Natalie. “The mission of Hospicare & Palliative Care Services speaks to my soul, and I look forward to contributing to its success.”
With
the start of 2019, Hospicare & Palliative Care Services was thrilled to
welcome three new members to its Board of Directors:
Rev. Tim Dean is the Director of Spiritual Care at Cayuga Medical Center, where he has worked since 2007. Tim is chair of the CMC Ethics Committee and serves on the Palliative Care Team. Tim’s faith, rooted in evangelical Christianity, has grown into an ecumenism that celebrates all people and welcomes all faiths. He describes himself as “a Baptist with some Buddhist leanings.” Tim’s personal interests include outdoor pursuits, especially on Cayuga Lake (paddling, fishing, sailing). Tim occasionally works as an instructor/facilitator for Cornell Outdoor Education to bring balance to his work at the hospital.
Michael Kilmer, a lifelong resident of Cortland county, is Executive Director of the Elizabeth Brewster House, a licensed adult care facility for up to 45 residents. He holds an undergraduate degree in Therapeutic Recreation from SUNY Cortland, and a masters in social policy from SUNY Empire State University. Happily married with two children, Michael and prides himself on his work in the community, including serving on the Board of Education for Homer Central Schools, on the board of the Hospice Foundation of Cortland County, and with a variety of other committees and councils.
Dr. Kathryn Rooth completed her Internal Medicine-Pediatrics Residency at Baystate Medical Center in Springfield, Massachusetts. After residency, she started working as a Hospitalist at Cayuga Medical Center and as an Urgent Care Pediatrician. She has been involved with the Palliative Care team at CMC and is passionate about end of life care in the developmentally disabled. For the past several years, Kathryn has participated in Women Swimmin’ where her husband and 3 children cheer her on.
Members
of the Board of Directors are some of the many volunteers who choose to help Hospicare
each year. Volunteers serve on committees, assist with office work, volunteer
at special events and – of course – work directly with patients and families in
their homes or in our residence. Each individual is critical to our work to broaden
Hospicare’s community reach in Tompkins and Cortland County, helping to ensure
all who desire and need our services have access to them.
Thank
you!
For more information on volunteer opportunities, contact Volunteer Manager Wendy Yettru at 607.272.0212 or wyettru@hospicare.org.
Our lives are largely guided by our values, and as an organization, Hospicare is no exception. One of our core values is excellence, which we define, in part, as a commitment to continuous improvement in everything we do. We expect and remain open to change, recognizing that it is inevitable and necessary for all growth. It’s this value that encourages us to take time to assess and reflect on how we’re doing, and it drives us to improve access to and the quality of our services over time.
Whenever we have the chance, we dive deep into data, which can help provide valuable insights, especially when we can compare other similar organizations to our own.
Recently, metrics were shared with us that showed we are growing in a very important area. A newly released Hospice Analytics report of 2016 Medicare data showed that community members who need our hospice services are more successful in finding and accessing them. The measure, which is referred to as “hospice utilization,” is measured by the percentage of Medicare deaths in each county that occurred on hospice services.
The data told an interesting story, and one that we are proud to share with you. Across our service area, in both Tompkins and Cortland counties, hospice utilization increased between 2015 and 2016. Tompkins county hospice utilization increased by 3.7% and Cortland county experienced a growth of 3.6%.
While we’re proud of these statistics, and the community relations and outreach work that no doubt contributed to it, we’re more happy that this growth means that more patients and loved ones gained access to our services.
Bottom line: we’re reaching more families in both of the counties we serve.
At the same time, we will not rest on our laurels. Excelling in the context of hospice utilization in New York State is a great start, but we can always improve. We wouldn’t be embodying our value of excellence without looking to identify where we still have work to do.
One way we could be doing better is by getting involved with patients earlier, which would help introduce families to our services sooner and would increase the quality of life of patients in their final months. Like most New York hospices, our average length of stay is low compared to the national average. And this is where we need your help!
Help us get the word out so our services to reach the people who need them most. Talk to your friends and family about hospice services and the options they have when facing a life-limiting illness. Read more about why it helps to understand palliative care options before you’re sick. Connect with a staff person at Hospicare directly to discuss a patient – family members, friends, neighbors, and even casual acquaintances can make a referral. Additionally, we welcome the opportunity to speak to your group, large or small, about hospice or palliative care services in Tompkins and Cortland county. Email our outreach and communications manager at communcations@hospicare.org or give us a call at 607-272-0212.
