As I walk into the Malone, New York office of Hospice of the
North Country, I’m reminded of all the memories I have from working at the
organization. I started my career in hospice and communications there twelve
years ago. Every day I was amazed at the
work my clinical colleagues were doing. I wasn’t at the bedside, but
occasionally, I got to go into patient’s homes and interview them and their
families. It was the highlight of my job. I looked forward to lunches spent
with the nurses, who would talk about the different events of the day. They
never stopped thinking about their patients…even at a lunch break where they
could easily use the time to talk about the latest episode The Bachelor (okay
we did that sometimes!).
Now that I work at NHPCO, I am more aware of what is going
on with hospice care on a national level. Regulatory changes, reimbursement
cuts, and new payment models are just some of the things we are currently
facing as a community. Healthcare in this country is constantly evolving and
hospice is facing many challenges. The reality is that hospice will probably
look different in five years. We are seeing a greater need for providers to be
innovative when it comes to care delivery all while preserving the mission of
hospice care.
Naturally, it’s easy to get wrapped up by these issues. They
are so important to our community and at NHPCO, we must do everything we can to
guide providers through these challenges. However, I wanted to get back to the
basics, back on the ground meeting with those who are doing the work at the
bedside. So, I went back to HONC and interviewed an amazing human being and
hospice volunteer – Birdie Leavitt.
Birdie is a person I will remember for the rest of my life.
She checks off all the hospice volunteer criteria – because her husband and
family member received such quality hospice care, she felt she needed to give
back and signed up to volunteer. She is willing to visit with anyone at any
time, go into any living situation, and drive miles upon miles on country roads,
sometimes in a snowstorm, to get to her patient’s home. She will come into the
office and stuff envelopes, shred paper, and cuddle the office cats Alice and
Tommy.
Birdie and one of the hospice cats. |
I talked with Birdie about her experience as a hospice
volunteer and I was so pleased to learn that she had the same passion, if not
more, for hospice and volunteering now as she did when I worked with her seven
years ago. Birdie has a binder that is full of memorabilia from her time at
HONC. It’s a lot thicker today than it was the last time I looked through it. Since
2004, she has collected thank you notes, messages, obituaries, and mementos of
the patients and families she cared for.
She reminisced about the range of activities she has
performed as a hospice volunteer – making breakfast, doing dishes, picking up a
few items at the grocery store for a family after their loved one died, singing
along as a patient performed her daily comforting activity of playing the
piano, and visiting with a patient and family on Thanksgiving Day.
Birdie told a story about a nursing home patient who didn’t
have any family to provide support and companionship. This person had only the
staff charged to care for them. The team at HONC made a commitment to staff five
volunteers daily so the patient wouldn’t be alone in their final days. Birdie
visited the patient and would wheel them out to the courtyard to look at the
flowers and plants. It was one of the only times this patient left their room
since being admitted weeks before. The patient’s disease had made it difficult
for them to speak but, during one of Birdie’s visits, they communicated by
grabbing Birdie’s hand and placing it against their cheek. Birdie had made an
impact on this patient and they remembered her through the dementia and
loneliness.
Many people don’t understand that hospice teams will go into
any home and living condition to ensure that a patient is cared for. Birdie
talked about two patients she was volunteering for. One of the patients lived
in a beautiful home with a gorgeous chandelier. The other patient lived in a trailer
with a hole in the floor. When Birdie sat down, a chipmunk peeked out its head.
Her comment to this contrast in living situations, “With hospice, no matter how
you live where you are, you get the same care as the next person.”
When I asked Birdie if she gets attached to her patients,
she said without hesitation, “You do get attached to them. I can tell when the
time is getting short, when it’s getting close.”
I learned that HONC is taking steps to provide emotional
care for their volunteers, to ensure that they understand and recognize the
symptoms of grief that they might feel after losing their patients. Bereavement
coordinators will be providing a seminar for all the volunteers in the
organization this fall. Volunteers are encouraged to attend and have been told
they can bring friends along because hospice cares for the whole community, not
just those receiving hospice care.
Finally, I asked Birdie what hospice meant to her. She
answered, “It means everything. It means doing something for somebody else. It
means more for me than I could ever do for them.”
Birdie is the model hospice volunteer. But she’s so much
more than that...just like hospice is more than just a piece of the United
States healthcare system. There are thousands of hospice volunteers, like
Birdie, across the country and they are one of the reasons hospice care is so
unique. We often hear that volunteers are the “heart of hospice.” They are also
the foundation of hospice, as this movement was started by volunteers. They are
an integral component of the interdisciplinary model of care that makes hospice
special.
You will not find this type of care in any other part of
healthcare in this country. I didn’t need to go back to HONC to understand why
hospice is so important because I was already a believer and advocate for our
community. But it’s always good to be reminded that people like Birdie are out
there, willing to sit with your dying loved while you take a much-needed break,
do the dishes that are piling up because you are more focused on caregiving, or
sit by your side as you take your final breath.
Hospice might look very different five years from now. Let’s
preserve and protect that pieces of hospice care that make it so special.
Let’s make sure the Birdies out there can continue to make house calls to
patients and families who need a little extra help.
By Amanda Bow
Senior Director, Communications and Digital Strategy
NHPCO
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