Dear Barbara,
We had hospice care. Hospice was called in for my dad about four or five days before he passed. They gave us a printout with some information. I have to say I scanned over it, but did not read it thoroughly. So it was at the very end that hospice came in and I'm sure they knew what point he was at. But they did not tell us how advanced he was, what to expect, or prepare us. Even the chaplain, whom I would have thought would have offered some guidance to us, did not. No matter what point you're at in this journey, they should tell you what you need to know right then, even if it's the last few days of your loved ones life. And we did not get that.
You and I are on the same page. Families need time, teaching, and direct information that is honest yet gentle. I’m so sorry you didn’t get the guidance and support you needed. I hope you will talk with the agency and express your concerns. The hospice leadership will want to know that your family feels they were not adequately prepared or supported. Sharing your experience may help another family receive the guidance they need. Blessings to you. Barbara
I hear from too many families, like the one above, who feel they were not adequately prepared for what was happening or what to expect. Their concerns include the length or number of visits, lack of information and teaching, or that referrals to hospice that came too late.
My response, other than “I’m sorry,” is to encourage them to contact the hospice director and have a conversation (hopefully in person) about their experience. Talk about what you felt was missing, whether it was information, lack of education, number of visits, or support.
People running the agency need to know when there's a problem. Hospice leaders cannot address concerns they are not aware of. Sitting at the top can sometimes insulate and isolate them from what is happening day to day. Go to the top. Share your experience and explain what you needed but did not receive. Most likely, your conversation will lead to changes that help another family have a better experience.
Good hospice care is more than managing physical symptoms. It is also teaching, guiding, and preparing families for what is happening and what to expect. Even when hospice comes in very late, there is still time to educate.
If you believe the care was inadequate or inappropriate, you can also find information about filing a complaint through Medicare.gov. These actions won’t change what has already happened, but speaking up may make a difference for another family.
Something more... on what hospice families need
When someone you care about is approaching the end of life, knowing what to expect can make a difficult time a little less frightening. The Approaching Death Support Kit brings together resources to help you understand what is happening, what you can do, and how you can be present for your special person. Knowledge reduces fear.
