Taylor and Me - Heart 'n Home Hospice & Palliative Care, LLC
Pediatric-Hospice

Taylor and Me

Taking care of children on hospice can be very difficult for many. Although it can be emotionally hard, I find that these special patients also need loving care, it just takes a different approach.

When I first met Taylor she hated nurses, doctors, and anything of the sorts.  She had been born with a disease and had spent her lifetime in and out of doctor’s offices.  When I first went to her house she would run from me, figuratively speaking.  She would quickly drive her wheelchair into her mom’s room, lock the door and hide.  She didn’t want any part of my care.

I know kids are different than adults, so I had to approach this situation differently.  A child’s eyes see things differently, so I got down on her level. I took some time to see what things she liked and did not like, and I figured out that she was spunky and liked to play games.  I tried to make our visits fun and it wasn’t long before she wasn’t afraid anymore. We got to be good friends and she gave me the nickname, Pickle, because I am tall, skinny, and apparently prickly.

When it was time to give her a bath, we would BOTH get soaked!  I would give her some of my latex gloves which she would fill like water balloons and as soon as she would fill them up, she would dump them on me. We did this over and over during each bath.  It brought a smile to her face and her joyful play touched my heart.

When the Care Navigator and I found out that she loved silly string we decided to plan a silly string fight.  We got some silly string and invited her sister and cousins to join us and we proceeded to have a huge silly string fight in her driveway.  It ended up being a blast!

Like with all my patients, at some point it becomes time to say goodbye.  The sweet memories that I made with Taylor will stay in my heart forever. After she passed, her Care Navigator and I wanted to do something special with her siblings in remembrance of Taylor, so we decided to hold another silly string fight. It turned out to be another special day.  We understand that even though these siblings hurt and have lost a lot, they also are kids and they like to have fun.

Abbie A., CNA

Our Bereavement Counselors continue to work with this family to help them keep Taylor’s memory alive as well as deal with their grief.  At Heart ‘n Home, we understand the special nature of working with children and their families. One thing that is unique with pediatric patients is that they can continue to seek all treatments with their regular doctors along with hospice. This means they can still fight the disease and benefit from the services of hospice. We also understand the impacts of grief on children when they lose a sibling, or parents when they lose a child, and we have a bereavement program focused on their needs.

We won’t forget you, Taylor!

If you have questions about how our hospice team can work alongside a child’s team of doctors, contact us and we’d be happy to meet with you to discuss your needs.

 

 

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Children Can Also Benefit From Hospice & Palliative Care

According to the NHPCO (2009), there are several differences of palliative and/or hospice services that are delivered to adults and pediatric palliative and/or hospice care.  The children that are in need of palliative and/or hospice services are of an age ranging from infancy to adulthood.  These patients can have a wide range of diagnoses, and the care and decisions that are made are ever-changing throughout the different developmental stages the child ages through.  Other differences include, “Pediatric trajectories of illness, clinical models of care delivery, funding mechanisms, research paradigms, educational initiatives, communication strategies, ethical concerns, staffing ratios and management, and effective pain/symptom management interventions.”

In 2006,  the Children’s Hospice and Palliative Care Coalition put out a survey to 225 bereaved families and families of children with terminal conditions.  The survey shed light on the lack of knowledge that families have of palliative care and/or hospice services available for their children.  Of the types of treatment (non-hospice services) utilized at home in-between hospitalizations:

  • 49% received none
  • 34% received in-home nursing visits
  • 28% received support from a social worker
  • 13% received 24/7 on-call nursing
  • 14% received respite care
  • 11% received bereavement/grief support

Of the services that families stated they wished were available: 70% stated support from a social worker, 67% stated respite care (and noted that they had NOT received it), 65% stated they would have benefited from grief/bereavement support (had not received any), 65% stated 24-7 on-call nursing, 65% stated volunteer visitors, and 51% stated spiritual support.

A helpful resource to read if the child has a cancer diagnosis is Children Diagnosed with Cancer: Dealing with Diagnosis.

Refer a patient to us on our website at www.goHOSPICE.com or call us at 1-800-HOSPICE.

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