Can we overcome the stigma of hospice?

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By Patricia Degan, Director of Marketing, Public Relations & Volunteer Services

The Merriam-Webster dictionary defines "hospice" as: a program designed to provide palliative care and emotional support to the terminally ill in a home or homelike setting so that quality of life is maintained and family members may be active participants in care. The dictionary further defines "terminally ill" as: having a disease that cannot be cured and will cause death. The dictionary does not define when death will occur. Unfortunately, too many of us assume that when we hear "terminal" or "hospice" it means we are already at death's door; there is no more hope; there are no more good days ahead.

In my nearly 18-year career at Niagara Hospice I have met many patients, staff and volunteers that have proven how very far from the truth those statements are. From the family members that have stated, "We wish we had called sooner," to our staff that are heartbroken knowing the comfort they could have provided sooner to their patients who instead suffered unnecessarily before making the choice to allow help from hospice. Fear of a word prevents this.

I can recount many patient stories from families that called hospice at the right time - in time for the patient to make one more trip to Disney World; in time to go fishing one more time off the Wilson pier; in time for a bride to marry the love of her life. Real patients did this, with support from their Niagara Hospice team. How did they do it? Through meticulous pain and symptom management from their hospice team as well as added supports for family caregivers. And they called at the right time.

So how do we overcome the stigma of "hospice?" First, know this: Medicare guidelines dictate that hospice care is for terminally ill patients with a life expectancy of six months or less. However, no doctor is born with a crystal ball and none can always predict the speed of disease progression. Many hospice patients live beyond 6 months - even years - likely due to slower disease progression due to the expert pain and symptom management hospice professionals provide.

Second, when dealing with a serious illness, wouldn't it be great to know that you have a whole team behind you? A whole team to help support tired caregivers? A team that allows the wife to be a loving wife; or a son to be just that and not the sole caregiver. With Niagara Hospice, patients and their family caregivers become part of a whole team dedicated to provide the very best in comfort - physically, emotionally and spiritually. Their team includes:

  • The patient' s personal physician
  • Hospice physician
  • Nurses
  • Hospice aides & homemakers
  • Social workers
  • Spiritual care counselors
  • Trained volunteers
  • Massage, speech, physical, occupational and music therapists, if needed

Niagara Hospice is the only hospice provider in Niagara County and we are fortunate to also provide services not required by Medicare, thanks to a generous community that gives through memorial donations, grants, or by participating in our fundraisers. Some of these services include massage therapy, transportation via our ambulette that is staffed by two hospice staff with one being an EMT, Legacy recordings, pet visits and pet care services to name a few. Further, our services extend to the family for 13 months following the death of their loved one. We do not disappear while families are grieving; our goal is to help, teach and support both patients and families through the illness, and through the grieving process.

Back to how we overcome the stigma of hospice. Consider this: did you know several studies support the fact that hospice patients live longer? One study published in 2010 by The New England Journal of Medicine supports the fact that patients who receive hospice care live longer than those who receive standard care. The study found that these patients lived an average of two additional months. Researchers also found that hospice patients reported a higher quality of life through the final course of their illness.

While the holiday season is upon us, think about anyone you know that might benefit from the added supports hospice care provides. Why should they, and their family, be denied the gift ofmore time? Hospice can help, sooner than most people think.

For more information call Niagara Hospice at 716-HOSPICE or visit www.NiagaraHospice.org. Our staff and volunteers are here to help. Remember, hospice is not the fast track to the end of life - it's simply choosing a smoother ride for the journey.

 

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