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.
3 comments
Holly
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BK Books replied:
Hi Holly, I'm glad my _Gone From My Sight _was helpful when your father was dying. If you do not received it for your husband when Hospice arrives you can get it from my website. You will also want The Eleventh Hour which is the companion to _Gone From MY Sight. _It will give you guidence for caring for your husband. My blessngs to both of you. Barbara
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BK Books replied:
Hi Holly, I'm glad my _Gone From My Sight _was helpful when your father was dying. If you do not received it for your husband when Hospice arrives you can get it from my website. You will also want The Eleventh Hour which is the companion to _Gone From MY Sight. _It will give you guidence for caring for your husband. My blessngs to both of you. Barbara
Diane
It’s always difficult to read about hospice experiences that don’t deliver what the caregivers need. As someone who has a non clinical role in a non profit hospice, I see the heart and effort our staff and volunteers put into supporting patients and their circle of care. While every situation doesn’t go perfectly, most of the time our families are well-served, and they share their positive feedback. When we receive a complaint, it is thoroughly followed up on and we make the necessary changes in our organization. I share this as another perspective. It seems that these blogs are getting increasingly negative about hospice care.
As a society, we are death avoidant. We also have medical providers that shy away from difficult conversations with patients and their loved ones about care options that may include palliative or hospice care earlier in the disease process. This results in patients and families having to absorb a lot of information in very challenging circumstances. In addition, increasingly more patients do not have a support system in place making care more difficult to deliver.
Having been a family member of a hospice patient before I worked for hospice, I too thought hospice providers would spend more time in my parents’ home as my dad declined. I was nervous about administering medication. Having said that, the hospice agency was available by phone for any of my questions and they offered the support my mother, brother, sister and I needed at the time. They also made visits and answered my questions. I took the time to read the materials provided. It also helped that my father was accepting of his pending death, talked openly about it, and was spiritually and materially prepared.
This is a long way of saying that there are many factors that impact the circumstances surrounding the death of a loved one; hospice care is one of those aspects. It is my goal to encourage conversations where people talk to each other about what is important to them before they are in a crisis situation. There is a wonderful tool, Go Wish cards, that can be used as a conversation starter. I also keep a stash of Barbara’s books to share with friends and family who are looking for support. We all can play a role in making end-of-life care better.
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BK Books replied:
Diane, thank you for sharing your thoughts. There are many wonderful hospice organizations and dedicated people doing this important work. Hospice is my first love and has been a part of my life for over 44 years. I've seen the good, the not so good, and the challenges hospice workers face every day.
My intention with this particular blog post was to give a voice to families who felt they were not adequately prepared or supported. I appreciate your protectiveness of hospice. I share that love, and I believe we can acknowledge the lapses in care while celebrating all the good that hospice does.
Blessings to you and thank you for the work you do. Barbara
It’s always difficult to read about hospice experiences that don’t deliver what the caregivers need. As someone who has a non clinical role in a non profit hospice, I see the heart and effort our staff and volunteers put into supporting patients and their circle of care. While every situation doesn’t go perfectly, most of the time our families are well-served, and they share their positive feedback. When we receive a complaint, it is thoroughly followed up on and we make the necessary changes in our organization. I share this as another perspective. It seems that these blogs are getting increasingly negative about hospice care.
As a society, we are death avoidant. We also have medical providers that shy away from difficult conversations with patients and their loved ones about care options that may include palliative or hospice care earlier in the disease process. This results in patients and families having to absorb a lot of information in very challenging circumstances. In addition, increasingly more patients do not have a support system in place making care more difficult to deliver.
Having been a family member of a hospice patient before I worked for hospice, I too thought hospice providers would spend more time in my parents’ home as my dad declined. I was nervous about administering medication. Having said that, the hospice agency was available by phone for any of my questions and they offered the support my mother, brother, sister and I needed at the time. They also made visits and answered my questions. I took the time to read the materials provided. It also helped that my father was accepting of his pending death, talked openly about it, and was spiritually and materially prepared.
This is a long way of saying that there are many factors that impact the circumstances surrounding the death of a loved one; hospice care is one of those aspects. It is my goal to encourage conversations where people talk to each other about what is important to them before they are in a crisis situation. There is a wonderful tool, Go Wish cards, that can be used as a conversation starter. I also keep a stash of Barbara’s books to share with friends and family who are looking for support. We all can play a role in making end-of-life care better.
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BK Books replied:
Diane, thank you for sharing your thoughts. There are many wonderful hospice organizations and dedicated people doing this important work. Hospice is my first love and has been a part of my life for over 44 years. I've seen the good, the not so good, and the challenges hospice workers face every day.
My intention with this particular blog post was to give a voice to families who felt they were not adequately prepared or supported. I appreciate your protectiveness of hospice. I share that love, and I believe we can acknowledge the lapses in care while celebrating all the good that hospice does.
Blessings to you and thank you for the work you do. Barbara
Cindy Rosenberger
As a healthcare provider(nurse practitioner), I experienced a similar experience. No real support from the hospice caregivers. When it was near the end for my dad, I was alone trying to be the daughter as well as the healthcare provider. It was not a good experience and I received very little support or sympathy. My mom passed in a different hospice network and the experience was very different- positive. I felt I was left to figure out medication dosages when the prescribed didn’t work. No one suggested he was getting worse-although in my heart I probably knew but could t face it. I cannot honestly recommend my local hospice network.
It was not a good experience
Thx for listening
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BK Books replied:
Hi Cindy, I am so sorry for the lack of support you received. I hope you talked with their Administrators so they have the opportunity to do better for others. Blessings! Barbara
As a healthcare provider(nurse practitioner), I experienced a similar experience. No real support from the hospice caregivers. When it was near the end for my dad, I was alone trying to be the daughter as well as the healthcare provider. It was not a good experience and I received very little support or sympathy. My mom passed in a different hospice network and the experience was very different- positive. I felt I was left to figure out medication dosages when the prescribed didn’t work. No one suggested he was getting worse-although in my heart I probably knew but could t face it. I cannot honestly recommend my local hospice network.
It was not a good experience
Thx for listening
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BK Books replied:
Hi Cindy, I am so sorry for the lack of support you received. I hope you talked with their Administrators so they have the opportunity to do better for others. Blessings! Barbara