If It’s Time for Hospice – Here’s some Help

When someone tells you it’s time to call hospice for someone you love, it’s one of the toughest bits of news you’ll ever hear.  However, when you do get that news, you’ll still need good information.  Here are a few tips.

Find the Right Fit

First of all, you have a choice about which hospice agency or provider will give care to your loved one.  You will often be given the names of one, sometimes up to three, agencies that provide hospice care.  A doctor, a hospital social worker, your elder’s nurse practitioner or someone at your elder’s care facility usually gives hospice agency referrals.

You can call one of these agencies and/or you can do your own research on which agencies have the best reputation in your elder’s community.  You have a choice.  You don’t have to use one of the agencies that was referred to you.  Remember this.

Sometimes it is very convenient to use a referral.  Often, the person or organization referring the hospice agency to you has experience with that agency.  They refer agencies that work well with the system that shares their name.  That’s good in many ways.

How to identify the right fit –

  • The right hospice provider will understand your elder’s wishes, will work with the family as partners in care, will be very effective communicators and will be responsive to any changes needed or requested.
  • Interview each of the hospice agencies before you select one.
  • Ask neighbors, friends, coworkers (and even on social media) if they have had any experiences good or bad with hospice agencies. Who would they recommend?
  • Read this helpful list from the American Hospice Foundation. americanhospice.org/learning-about-hospice/choosing-a-hospice-16-questions-to-ask/
  • Check with your state hospice accreditation agency (search Internet for this in your state) on the reputation of each hospice group you’ve identified. Each state does this differently.  You can find out if an agency has any complaints filed against them or if they are currently accredited.
  • A list of hospice associations by state can be found at https://hospicefoundation.org/Hospice-Directory
  • Remember you can change hospice agencies if you are not satisfied. Specifics at Medicare.gov – see next point.

Learn What Medicare Covers in Hospice Care

  • Visit Medicare.gov and use the Search box to find information on Hospice.
  • Download Medicare’s publication on Hospice Care. medicare.gov/Pubs/pdf/02154-Medicare-Hospice-Benefits
  • It is important to know what Medicare does and doesn’t cover in the hospice program. Don’t just rely on the hospice agency personnel to tell you.  Verify any information you receive.

Read some good information

  • The best book that I’ve found on situations you’ll encounter in end-of-life care is Final Gifts by Maggie Callanan and Patricia Kelley. It is a must-read for families experiencing hospice for the first time. Take the time to read it. Please.
  • Visit hospicefoundation.org – the website of the Hospice Foundation of America. Good info available here on all sorts of topics.
  • National Association of Home Care and Hospice at nahc.org. They have a hospice patient’s bill of rights.

Have the Paperwork in order

  • Make sure your elder has an updated Advance Directive – delineating their wishes for end-of-life care (and that you and their providers have a copy of it)
  • Verify that their will is up-to-date and accessible to their attorneys and/or family members designated to be personal representatives.
  • Review Power of Attorney (POA) documents to make sure they match your elder’s wishes. Provide copies to care providers and anyone designated as POA.

Be a Good Advocate

  • Now is the time to speak out or speak for your elder. Their own voice may grow weaker but your advocacy should grow stronger.  Find your most diplomatic voice and use it to make sure your elder’s wishes and your family’s wishes are respected and carried out.

You will make it through.  You will.  It’s hard, it may be long, but it may also bring some of the best, most touching moments you’ve spent with your elder.

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