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When Caregivers are Not Ready for Hospice

by Viki Kind, End-of-Life Expert
November 03, 2011

Question: We got hospice involved because we needed someone to change Dad's dressing. Now they want us to talk to the hospice chaplain, social worker and to let a volunteer visit. We don't feel ready for it. Aren't they rushing it?

Answer:

Of course your Dad gets to determine which services he wants to receive and which ones he doesn’t need.  If your dad really only needs someone to change his dressing, he may not need hospice.  He may only need a home health nurse to stop by.  You can discuss this with your dad’s primary care doctor. 

But it is possible he needs more from hospice than you and your family realize and that the hospice team is doing everything right.  What healthcare professionals know is that the patient usually lives longer and lives better when hospice does its job.  (And all of these additional services come at no cost to you.)

So, I would recommend you let the hospice team do more for your dad.  He deserves to have all the benefits that hospice provides.  Even if you are not ready to think about your dad dying, your dad may have questions and fears that he would like to talk about with a social worker, volunteer or chaplain.  I am a hospice volunteer, and when I visit patients and their families, patients often don’t feel comfortable talking about these issues in front of their family members.  But the minute the family leaves the room, the person will have lots of questions for me and will want to talk about what to expect when dying.  Your dad probably knows he is very sick and would like the education and support the hospice team provides. 

You can always say yes to these services and then, if it isn’t working, you can change your mind.  But you may be surprised how much these hospice workers will help you too.  I have heard from many families how grateful they were to know what to expect and how to help their loved ones go through the dying journey. 

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Viki Kind is a clinical bioethicist, professional speaker, and hospice volunteer. Her book, The Caregiver’s Path to Compassionate Decision Making: Making Choices For Those Who Can't,” guides families and professionals through the difficult process of advocating for those who can no longer speak for themselves. She has recently launched a DVD that includes a template to create a quality-of-life statement.

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