Friday 27 February 2015

Holding hands


I'll be honest. In my role as a spokesperson for the National Hospice and Palliative Care Organization, it’s often my "job" to emphasize the positives about hospice care.
But if I take off my career hat for a moment, I have educated others about end-of-life care because of my own experiences and the losses we suffered as a family. I also know that hospice and palliative care professionals are ready to help sooner and more often than they are called in to help.
My journey began with my father’s terminal illness, and continued with an unexpected and devastating diagnosis for my newborn son. Both lives were cut far too short by conditions medicine simply could not cure. So now, I share my story with all of you, in hopes of helping even one family know they have options for their loved ones’ care.
My father, who went by the nickname “Brick,” died of metastatic colon cancer at the age of 58. He was a six-foot-seven tall man, with a big and boisterous personality to match. Brick fought cancer for four long years, and in the final days of his life, made it clear he was done with hospitals. My mother was understandably frightened by the thought of caring for all his needs in their Indiana home. Hospice was there when we needed it most. We were told us what to expect and the best ways to keep Dad comfortable. The hospice team helped us honor his wish to die at home in a way we could not have without their support.

A few years later, our family faced tragedy again. My newborn son, Evan, had been diagnosed in the womb with a congenital defect of the ureters, the tubes that carry urine from the kidneys to the bladder. He had blockages in those tubes, and the ‘'backup' caused a ripple effect—scarring and destroying his kidneys. Evan only blessed our lives for seven weeks, and he spent a significant part of his time in the neonatal intensive care unit, at a hospital in Philadelphia. He underwent multiple treatments including surgery, dialysis, and the insertion of a PIC line catheter into his tiny chest.
Thankfully, we had a wonderful team of doctors and nurses who worked around the clock to keep his body going. But, now I realize we could have also asked to consult with a specialist in palliative care, a doctor trained to focus solely on patient comfort and relieving suffering. Many families don’t know this option exists, but they should.
In the tens of thousands of family surveys my organization has conducted after the death of a loved one, people repeatedly tell us that they wish they had taken advantage of hospice sooner. There are barriers that keep this from happening, and people need to know this is an issue. Doctors are reticent to say the word "hospice." Many people have the misconception that choosing hospice care means giving up all medical interventions for their loved ones, however, that’s not the case at all. In fact, more often than not, those who have chosen to receive hospice care were able to cherish the time that remained with their loved one in a more calm and comfortable setting. Their team is well-trained and dedicated to keeping patients free of pain, and among friends and family in a peaceful in the place they call home. The overwhelming majority of U.S. hospices are committed to a shared vision to bring the best that humankind can offer to all those individuals facing serious illness, death and grief.
According to the annual Facts & Figures study, Hospice Care in America,* conducted by National Hospice and Palliative Care Organization, people chose this care too late to take advantage of all it offers: more than half of patients die within a month, and a third within 7 days of electing hospice. The fact is, facing illness and death is overwhelming. But knowing you have the right care for your loved ones can make this inevitable journey an easier one to take. I know, because I have travelled that difficult road.
To learn more about these options, and to find a provider in your community, go to To share your story of how Hospice or Palliative Care has helped your family, please share your story and a photo of your loved one in our gallery.


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