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March 23, 2015 at 9:49 AMComments: 0 Faves: 0

Study Shows Hospice Often Requested Too Late - Don't Make This Error

By Jeffrey VanWingen M.D. More Blogs by This Author

Death is a sure thing, just like taxes. If you're like most of us, you've pondered death. We wonder how we'll die. We consider when it will come. And, we think about under what circumstances we will finish life. Will it be quick? Will it be painful? 

Though we can't ultimately put the issue of death on our terms, some semblance of control is to be desired. This is the mission of hospice. Hospice is a wonderful healthcare service available to all. Unfortunately, it is underutilized in that it comes too late for most.

This blog will highlight hospice toward an understanding of hospice goals in hopes that it helps you or a loved one around the end of life.

What is Hospice?

Contrary to popular belief, hospice is not only for people cancer, nor is it a physical place where people go to die. Rather, hospice is a system of care that provides support during advanced illness. Its focuses is on quality of life and comfort when a cure is no longer being pursued.  To qualify for hospice, a physician and hospice director must agree that in their best estimation, six months of life or less are expected. Enrolling in hospice brings care for not only the patient, but their caregivers from a team that includes doctors, nurses, social workers, spiritual care, volunteers and others depending upon the particular program. 

Hospice care - including medications and even respite care for caregivers if needed - is a benefit covered under Medicare. The goal of the hospice team is to make a person comfortable and content in the final chapter of their life. 

Roadblocks

The hospice experience is a journey toward the end with the hospice team working with the patient and their family members to enhance and guide through this difficult process. Sadly, however, caretakers often miss out on months of great support and care with hospice waiting until the last hour to call on them for help.

While twice as many patients enroll for hospice services compared to a decade ago, the services often come late in the process (42% compared with 21%) and data from recent years shows that over 25% of hospice referrals occur in the last three days of life, and 40% of those occur after a stay in a hospital's intensive care unit (ICU).  At the same time, this comparison study noted that ICU stays in the last month of life increased in number and duration over the last decade.

This data can be interpreted as a call to better understand and utilize hospice on the part of the medical community and patients in general. Indeed, the Journal of the American Medical Association where the research was published also included a pointed editorial calling for doctors to communicate better with patients about end of life issues and weigh more accurately the benefit of aggressive care in the final weeks of life. 

I agree that the linchpin in making better use of hospice falls on more open and honest communication between doctors and their patients facing serious illness. It's part of good care to consider all outcomes. In medicine I appreciate the adage of the good farmer who prays for rain while preparing for drought.  Surveys show consistently that patients would rather be told a doctor's honest opinion than something "sugar coated." 

What Can You Do?

The most important thing that every person can do to prevent emotional and physical discomfort when the end of life is near, is to consider honestly and openly their desires and goals in this setting. Any adult should complete a living will and designate a healthcare durable power of attorney. These wishes should ideally be communicated with their designated loved one and with their primary physician. Ask your doctor for honest and open communication.  Measures are being taken in some doctors' organizations to improve upon this important attribute. Finally, if you have a loved one who is facing a difficult battle, be ready with love, support and knowledge to open this door of consideration. Remember, the hospice guidelines are about providing comfort and preparation. They are not about giving up. 

For more general information about hospice, I have found the guidelines on the Medicare site to be comprehensive without being too much information.  https://www.medicare.gov/Pubs/pdf/02154.pdf   

Sources:

1. http://jama.jamanetwork.com/article.aspx?articleid=1568250

2. https://www.medicare.gov/Pubs/pdf/02154.pdf

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