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Hospice

Making a Difference In and Out of the Classroom

Unlike this class, death is not an elective. Although it is one of two universal human experiences, our culture often ignores, denies, or misconstrues the true nature of death and dying. What happens when we bear witness to this natural process in the cycle of life and develop our ability to be fully present with others when they need us more than ever? It has the potential to change us deeply and fundamentally while shining a brilliant light on the path of our own lives.

With the support of their classmates, teacher, and comfort care home communities, senior students are offered the chance to care for others who truly need their purposeful, non-judgmental attention. In the home-like setting of a comfort care home, opportunities for learning extend beyond a traditional classroom rubric and conventional methods of evaluation. In this course, students will certainly find tangible “learning outcomes” by studying the medical/physical processes associated with dying and the basic nursing assistant skills of comfort care. The ultimate goal, however, will always be rooted in true relationships and connection, which occurs only through empathy and compassion.

What is Hospice?

While some people view hospice care as a place to die, hospice is actually a philosophy of care. It is based on a holistic approach to the end of life, for a person with a life-limiting illness and their family. This holistic approach means that hospice cares for the whole person, addressing their pain and physical symptoms along with their emotional and spiritual needs. Hospice adds life to one’s days, not days to one’s life. It focuses on quality of life both for the dying person and their loved ones. Cure is no longer the goal. Hospice focuses on caring, not curing. Death is not rushed, nor is it stopped when it does occur. At the center of hospice care is the belief that each of us has the right to die pain-free and with dignity, and that our families will receive the necessary support to allow us to do so. In the words of Dame Cicely Saunders, the founder of the modern hospice movement, “You matter to the last moment of your life. We’ll do all we can, not only to help you die peacefully, but to live until you die.”

Advent House Living Room, Photo by Amelia Hamilton

Students practicing mouth care, Photo by Amelia Hamilton

Volunteering

  • All volunteers are encouraged to complete one 4-hour shift per week.
  • The ultimate goal of service work is building relationships, and students will find it more difficult to become comfortable and confident as a beginning volunteer unless they do the work consistently over time. One shift/week creates continuity of care and increases quality of life for the residents and their families.
  • Students keep track of hours using the shift log, as well as the physical calendar in the CMEE.

Pasta Dinner Fundraiser

Each year, the Harley Hospice students organize a pasta dinner whose proceeds benefit the local comfort care homes. From beginning to end, the students plan the entire experience—designing the invitations, advertising the event, organizing the evening’s entertainment, planning for the meal and baking desserts, and writing speeches about what this class means to them. There is always a strong show of support from both the Harley community and the staff, volunteers, and family members from local comfort care homes.

Photo by Rachel Baum

In Their Own Words

Hospice lets you live your life that you have to its fullest. 

– Student Volunteer, Suzannah Sheeran

It’s all about staying with them and making them feel comfortable. 

– Student Volunteer, Nicholas Schultze

We’re able to get deep down into what we’re feeling, what we’re experiencing, which is important when we’re dealing with things with death. 

– Student Volunteer, Athena Baronos

That aspect of not seeing death as a failure, just as a natural process. 

– Student Volunteer, Nikole Fandino

Watching all these people when they have friends and family come, you’re not alone even at the end, even if they don’t have some of their family or friends with them there’s still the volunteers that are there for them. 

– Student Volunteer, Connor Ferris

Nothing gets out of that class, everything…It’s between us. 

– Student Volunteer, Nikole Fandino

Curricular Elements

Confidentiality

What is said in the classroom stays in the classroom. The only exception to this rule is if there is fear someone may be in danger. Similarly, students will need to share information about someone they are caring for with the other members of the care team — nurses, other volunteers, etc. — and in the classroom use first names only when referring to residents and their family/friends. Although comfort care homes are not licensed facilities, the classroom should follow HIPAA regulations as closely as possible.

Group Sharing

Along with confidentiality and privacy, the practice of non-judgment and active listening are essential to creating a safe, open forum in class. As author Brene Brown tells us, “I define connection as the energy that exists between people when they feel seen, heard, and valued; when they can give and receive without judgment; and when they derive sustenance and strength from the relationship.”

Ritual and Meditative Practice

By lighting a candle at the beginning of class and blowing it out at the end, we acknowledge our proximity to death and invite death to our table. This also serves as a practice in being purposefully aware of what’s happening in the moment, without judging yourself and others. Drawing heavily from the mindfulness-based stress reduction (MBSR) program created by Jon Kabat-Zinn at the University of Massachusetts Medical Center, this course provides you with the opportunity to develop practical tools for self-care while actively participating in highly sensitive situations during your service work.

Reflective Journaling

From the first day of class until the end of the school year (and hopefully into the future), students will keep a hospice journal to document their experiences and maintain a log of their hospice shifts. This is an essential process for connecting experiences in the field back to the classroom and the course content.

Trimester 1

Focuses on the tenets and history of hospice/palliative care, exploring Western culture’s attitudes/beliefs in regards to the end of life within a historical perspective, empowering volunteers with the core nursing assistant skills of hospice care, learning and practicing the psychosocial skills of being present with those who are dying/grieving, reflective journaling, group forming, and establishing connections with our local comfort care homes.

Trimester 2

Focuses on direct service to the dying residents of the comfort care homes and their loved ones. As students develop from a beginning volunteer to a valued member of the care team, they will be continually challenged to connect their experiences in the field back to the coursework.

Trimester 3

Now an experienced hands-on hospice volunteer, students will be challenged to demonstrate and share what you have learned with others in the community. During the third trimester, outside resource people will present on various topics, bringing a range of perspectives to the table. In June, the Ceremony of Remembrance will serve as the final gathering, a time to celebrate those who have died and share how everyone is connected.

Week-to-Week

Although the structure will vary depending on the particular subject and course work involved, the Hospice class will typically involve participating in lessons, discussion, and reflection from Monday–Thursday and participating in “Lab” (hands-on learning & practice) on Fridays.

Supplemental Readings

Students are encouraged to read from the following selection of materials

Being Mortal by Atul Gawande, Photo by Amelia Hamilton

From left to right: Madeleine Baum, Sybil Prince, and Sophia Gardner. Photo by Amelia Hamilton.

Team Members

The Hospice site was curated by Madeleine Baum and Sophia Gardner as their senior Digital Humanities & Social Sciences capstone project at Rochester Institute of Technology.

 

Madeleine Baum, RIT Digital Humanities & Social Sciences Program

Sophia Gardner, RIT Digital Humanities & Social Sciences Program

Tamar Carroll, PhD, Faculty Advisor

Jessica Lieberman, DHSS Capstone Director

Sybil Prince, Harley CMEE Instructor

Sue Weisler, University Photographer

Photos by Amelia Hamilton Photography

The Harley School

1981 Clover Street
Rochester, NY 14618
(585) 442-1770

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