What you don’t know about hospice care

November is National Hospice and Palliative Care Month

Many of you already know that hospice is a philosophy of care provided to terminally ill patients and their families with the goal of enhancing quality of life and addressing all physical, psychological and spiritual needs of the patient.  Hospice care is available for individuals whose physician has determined they are in the terminal stage of their disease, understood as a probable life expectancy of [approximately] 6 months or less. Most hospices provide good quality care and have a high satisfaction rating by patients and families. But we have problems with hospice utilization in New York.  

Underutilization of Hospice in New York 

In 2018 only about 50% of Medicare decedents received hospice care nationally. In New York it was only 30%. New York has the 2nd worst state utilization rate in the country. It is not clear why so few dying patients receive hospice care in New York, but increased efforts are needed to ensure timely referrals to hospice so that more dying patients are able to benefit.   

Stays in hospice nationally and in New York are too short, with over a third receiving care for just 14 days or less. This means that too many patients are not receiving the quality care that hospice generally provides for long enough. More patients should be enrolled earlier.

About 64% of New York State’s population is Caucasian but over 82% of hospice patients are Caucasian. So, while there is a significant underutilization of hospice generally in New York, hospice is used even far less by people of color, another problem that needs to be addressed.   

What You Can Do to Increase Hospice Utilization

There are so many misconceptions about hospice. We can all help by educating our family, friends, colleagues, and health care providers: 

• Discuss hospice with your relevant health care providers, letting them know that you want to be informed when you are terminally ill and are interested in having a hospice referral. 

• Explain that hospice is as much about living as about dying and remind loved ones that the patient is living until the last breath is taken.  

• Explain that hospice does not mean giving up hope. The time when hospice care is appropriate is usually the time when hope turns from curative goals to goals of maintaining or having the best quality of life possible, time with family and loved ones, comfort care and finding dignity in each day.

• Provide information to friends and relatives about hospice and especially people you know or family members of those who are dying about the benefits of hospice and how it is a system of care to ensure a better quality of life while the patient continues to live until he or she dies.

• Share End of Life Choices New York Hospice handout and our new video “Hospice at Home”

We are available to help. Please contact Clinical Director Judith Schwarz, PhD, at 212-252-2015, or email her at judith@eolcny.org.

Sincerely,
Ayana Woods
Executive Director

End of Life Choices New York seeks to expand choice at the end of life, respecting every individual’s wishes, and striving for the best possible quality of life and a humane and peaceful death. We depend on your support to do this work. If you are able to help, please click Donate below to make a tax-deductible contribution.