The Under-Utilization of Hospice

I recently heard from a former student who is working as a caregiver on an oncology floor. The student wrote about the difficulties of working with patients with terminal diagnosis. It reminded me of an excellent article that was given to me by a nurse mentor of mine named Lynn. “Letting Go” was published in 2010 by the New York Times and speaks to the under-utilization of hospice/comfort care and the sometimes extreme lifesaving measures individuals take without being aware there is even an alternate option of finding peace and comfort in their final days. So why aren’t Americans using hospice services?

Let’s start with the definition of hospice care. The National Hospice and Palliative Care Organization (NHPCO) defines hospice care as follows: “Considered to be the model for quality, compassionate care for people facing a life-limiting illness or injury, hospice care involve a team-oriented approach to expert medical care, pain management, and emotional and spiritual support expressly tailored to the patient’s needs and wishes. Support is provided to the patient’s loved ones as well.  At the center of hospice and palliative care is the belief that each of us has the right to die pain-free and with dignity, and that our families will receive the necessary support to allow us to do so.”

According to a study published by the NHPCO in 2012, a trend of shorter lengths of stay has been consistent over the past several years. 36% of individuals have a length of stay less than seven days and 63% have a stay of less than 30 days. Another interesting statistic is that 83% of hospice patients were over 65 years old.

Hospice Myths

There are many possible reasons why Americans aren’t using hospice services at all, or until the very end of life.  Here are a few…

  • Cost- Many individuals and families are unaware that Hospice services may be provided at no cost to the client or that the cost may be covered by insurance or Medicare.
  • Lack of Information- Sometimes life-saving measures are the only options offered to patients by physicians so individuals have no idea that hospice/ palliative care is an option or they don’t find out until the very end of their terminal illness.
  • Do Not Resuscitate (DNR)- A common misconception of hospice care is that a DNR must be signed. While many elect a DNR order, it is not required to receive hospice care and isn’t the right choice for everyone.
  • It means giving up- Some believe that hospice means giving up. Loved ones don’t even know how to bring up the topic of death and want to continue life-saving efforts even when this may not be the wish of the person who is dying. The American Medical Association (AMA) released an article last year titled “How to Talk About Hospice Care” that is full of information about how to have these tough conversations.
  • Hospice is for cancer- Only 36% of hospice clientele have a cancer diagnosis. If you have not seen “The Fault in Our Stars” it is an excellent movie about living while you’re dying.

Hospice is a Choice

A picture of my grandparents  all dressed up in the 80's.

A picture of my grandparents, all dressed up, in the 80’s.

Utilizing hospice services is a choice. Both my grandmother and grandfather received hospice services at the end of their lives.  Both had a terminal diagnosis and benefited from the services hospice provided.  Not only did they benefit, but there was a benefit to their loved ones as well.  The support services offered to family members and loved ones, even after death, can be critical to the well-being of those losing someone they care about.

I am humbled to know so many amazing caregivers and nurses who are providing outstanding physical and emotional support to our under-served dying population. Thanks for all you do!