The (NHPCO) National Hospice and Palliative Care Organization is a non-profit organization which represents hospice and palliative care programs and professionals. Their vision is “A world where individuals and families facing serious illness, death and grief will experience the best that humankind can offer”.
During my ten years of hospice experience as a hospice social worker, I can tell you I have experienced the VERY best that humankind has to offer, with all the amazing and compassionate professionals who have shared these experiences with me, and the incredible patients and their families.
Hospice is truth, peace, dignity, love, compassion, people, life, quality, music, privilege, touch, honor, moments, hugs, memories, honesty, understanding, care, support, education, help, comfort and so much more.
My life has been touched by hundreds of people; with many different and wonderful experiences. I would love to share all of them with you. Alas, I cannot tell you about each and every hand that I have held, or hug that I have given or received. What I can tell you is that being present at the end of someone’s life is an honor and a privilege that cannot be explained in words. Watching a 97-year-old woman with dementia, not knowing who she is or where she is until I play her wedding song, “The Tennessee Waltz”. She looks up at her adult children and tells them she loves them, before slipping into a coma, only a few hours before she takes her final breath. Or a 55-year-old musician who was restless and agitated and nothing would calm him until we played Ozzy Osbourne loudly on his CD player he would go straight to sleep.
Hospice is about so much more than death, or life, it’s about the moments we spend with those we love. Each one of them special in its own way because it’s spent with someone we love or have come to care about. Hospice nurses may look very clinical and professional on the outside, as they enter a home or a facility. However, as they come in to meet a patient and their family they hold hands, give hugs and smile. They provide a comforting presence that is both assuring and compassionate. A hospice nurse is not like any other nurse I have ever met. Nurses are taught to cure and treat, nurses are taught clinical language with a focus on healing and wellness. A hospice nurse has the clinical knowledge, language, and behavior, with a hospice heart. That means their focus is on not only healing but comfort, with a focus on the creation of more special moments.
Hospice also has Social Workers and Chaplains, who provide additional comfort and support. I have been part of a hospice team where the Chaplain organized and officiated a wedding bedside so the father who was a hospice patient could be present as his only daughter was married. The entire team was present to provide support and do whatever else was needed. In essence, hospice makes it happen.
Another critical member of the hospice team is the CNA. Certified Nursing Assistants become very close with our patients and families. Our patients trust them to care for their more intimate needs. They give baths, brush hair, shave faces and also provide compassion and support. Often they are the most important member of the team, in the background doing things for patients that people never see, and that they would never share. Purchasing lip balm or Kleenex for our patients because the family forgets or simply cannot afford it. Recently, I observed a CNA bring a wig she had purchased for a patient so she could leave her room with dignity, her current one was matted and in bad shape.
Hospice exists to make a difficult time easier; while providing a compassionate team of professionals. Hospice is about having beautiful moments even when you have been given a limited prognosis or a terminal or chronic diagnosis. Those of us who work in hospice believe that life is not over when these things happen. We believe in a new phase of life, one that focuses on expectations, moments and memories.
By Tracy Coffey, LCSW at ALC Palliative & Hospice Care