The ALS Association

ALS Ice Bucket Challenge Progress

ALS and Hospice Care: Taking a Positive Approach

Dr. Don Bivins

For many, the word hospice conjures a host of difficult emotions. For some, considering hospice can feel like giving up, while others associate hospice with a place that takes those with terminal illness away from the comforts of home and family.

These long-held misperceptions of hospice too often prevent people from receiving the care and benefits that hospice provides. In fact, according to AgingCare.com, “More than 35 percent of people on hospice don’t even receive one full week of care, while 50 percent receive care for less than three weeks, according to 2010 figures from the National Hospice and Palliative Care Organization.”

Living Life on Your Terms
The hospice philosophy is actually focused more on living than dying. Take a look at this video produced by the Hospice Foundation of America to find out why.

“We try to take a snapshot of a person’s life and deal with every aspect,” says Don Bivins, M.D., Medical Director of hospice services at Gulfside Hospice and Pasco Palliative Care. “We aim to address a person’s spiritual and social needs, not just the physical. We help people live to the fullest between now and the time of death, bringing extra meaning to the last few months and days. We help families come together—to show compassion, and often to watch forgiveness unfold.”

Hospice and ALS
Under the best of circumstances, medical prognoses can be difficult to predict, and perhaps even more so for people with ALS, “who may stabilize and begin to deteriorate again,” Dr. Bivins adds.

With hospice, timing is important. Medicare requires a prognosis of six months or less in order to provide coverage. However, hospice services are not limited to any period of time. In fact, it’s not unheard of to spend a year or more in the care of hospice.

More often than not, hospice is not contacted soon enough causing patients and families to miss out on the wide range of support services hospice provides. That is why it’s never too early to begin your research to identify a hospice provider experienced with ALS for when the time is right. The National Hospice and Palliative Care Organization offers informational support on choosing a hospice provider in addition to a worksheet that can aid in your decision making process.

Your ALS clinic team can guide you on when hospice services may be most beneficial to you or your loved one, as every circumstance is quite different. A few signs and symptoms that should prompt a discussion with hospice and your clinic team include persistent pain, extreme fatigue, and a decrease in the ability to speak, swallow, breathe, and use the bathroom independently.

Hospice is Family Focused
One of the unsung benefits of hospice is that it allows family caregivers to receive added support and return to their respective family positions to focus on enjoying quality time together. See how hospice brought comfort and healing to families in their time of need

Dr. Bivins affirms, “We look at the whole the family to make life as good as it can be for the remainder of time left.”

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