A friend of mine asked me how to get a hospice referral. I suggested she first talk with her mom’s physician to see if he would make a referral. Then search the internet for hospices in their area and interview several.
The doctor provided a referral and my friend made a call to a local hospice — on a Wednesday. An interview was set up by the hospice to come to the house the following Sunday.
Yesterday, Sunday, they had the interview. It was determined that hospice services were appropriate and the agency made an appointment for next Sunday to admit my friend’s mom and begin services.
What in the world is this hospice agency thinking? It took two weeks from the time of the inquiry to see what hospice is and how it can help before services began. That is not the hospice I want to know.
By the time the family has mustered the courage to call, they are usually at their wit's end. They probably have needed services weeks if not months before they found the courage to call. – And now they will have to wait another two weeks?
What do I think is an appropriate waiting time for families and patients when a referral is made? 24 hours, even on weekends.
Time is the enemy here. Families and patients may not have two weeks to wait for services and for end of life education to begin.
Comprehensive end of life care, which is the purpose of hospice services, is best provided months before death actually comes. Yet the National Alliance for Care at Home (formerly the National Hospice and Palliative Care Organization) statistics show that over 50 percent of those receiving hospice care are on service for less than 30 days. This is why you don’t/can’t wait two weeks following a referral before services begin.
Exhausted caregivers, frightened families, and declining patients all have time-sensitive needs. The sooner the guidance and comfort can be given, the better the end of life experience is for all. Hospice provides necessary, comprehensive end of life care. Let’s make sure it is timely given.
Something more about… How Long Should It Take for Hospice Services To Begin After a Referral?
I highly encourage families who are caring for a loved one at the end of life to use my caregiver’s guide, By Your Side: A Guide for Caring for the Dying at Home. This guidebook helps caregivers learn about the dying process, know what to expect and gives caregivers more confidence. It will guide you in planning ahead. Most importantly it helps family caregivers learn ways to care for themselves as they care for their special person.
⭐️⭐️⭐️⭐️⭐️ Indispensable
We purchased this “By Your Side” booklet along w the set. I read them all, re read and referred back over and over through the weeks leading up to my wife’s death. I’m very glad we bought them. They’ve been a great help and blessing. With the info and insights in the booklets I was able to support others on this journey w us. I’m so glad we got these resources. Robert P. - United States
15 comments
Doug
Education, education, education. Whenever possible, I encourage those with aging or ill family members to learn about hospice care sooner rather than later. If they are concerned about their loved one’s health more so than their doctor, they may have the wrong doctor. If their doctor does make a referral and they don’t get a response from a hospice provider almost immediately, they should look at another hospice immediately. Ideally, end of life education and promotion should be driven by the family because they know the person in need better than anyone else.
Education, education, education. Whenever possible, I encourage those with aging or ill family members to learn about hospice care sooner rather than later. If they are concerned about their loved one’s health more so than their doctor, they may have the wrong doctor. If their doctor does make a referral and they don’t get a response from a hospice provider almost immediately, they should look at another hospice immediately. Ideally, end of life education and promotion should be driven by the family because they know the person in need better than anyone else.
Linda Graffius
When I was the Faith Community Nurse at my church, there were several times when a member was in LTC and in my opinion, needed hospice. But the attending Dr didn’t think they did! Well, the patient was suffering and with my encouragement the family had to insist on bringing in hospice. So there can be that road block, too.
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BK Books replied:
Linda, you are absolutely right, way too often a physician will not refer to hospice. A person can call a hospice, explain the situation and ask for an information visit. If the hospice thinks a referral is appropriate they can often facilitate the referral. Blessings! Barbara
When I was the Faith Community Nurse at my church, there were several times when a member was in LTC and in my opinion, needed hospice. But the attending Dr didn’t think they did! Well, the patient was suffering and with my encouragement the family had to insist on bringing in hospice. So there can be that road block, too.
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BK Books replied:
Linda, you are absolutely right, way too often a physician will not refer to hospice. A person can call a hospice, explain the situation and ask for an information visit. If the hospice thinks a referral is appropriate they can often facilitate the referral. Blessings! Barbara
Kim
Hi Barbara, thank you as always for educating the public on hospice services, I love reading your blog. At my hospice, we find that there can be a barrier with providers not discussing the hospice option in a timely manner with patients who would definitely qualify. To tear down that roadblock, we allow anyone to make a referral to us, it doesn’t have to come from a medical office or nursing facility. Sidenote: I even referred my father to hospice before his physician had discussed it with him, and we all benefitted from the services! We are committed to public education to let people know it’s their choice and they don’t have to wait to call us for either an informational visit or an assessment. Even with this barrier removed, the most common thing we hear from patients and families is “I wish I had hospice services sooner.”
P.S. Once we receive a referral we admit within 24 hours or less whenever possible. We know time is short and we want to provide as much education, comfort, and assistance as possible.
Thanks again for all you do!
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BK Books replied:
Hi Kim, good for you and your hospice. I like how you are making services known and available. Thank you for sharing. Blessings to you in the good work you are doing. Barbara
Hi Barbara, thank you as always for educating the public on hospice services, I love reading your blog. At my hospice, we find that there can be a barrier with providers not discussing the hospice option in a timely manner with patients who would definitely qualify. To tear down that roadblock, we allow anyone to make a referral to us, it doesn’t have to come from a medical office or nursing facility. Sidenote: I even referred my father to hospice before his physician had discussed it with him, and we all benefitted from the services! We are committed to public education to let people know it’s their choice and they don’t have to wait to call us for either an informational visit or an assessment. Even with this barrier removed, the most common thing we hear from patients and families is “I wish I had hospice services sooner.”
P.S. Once we receive a referral we admit within 24 hours or less whenever possible. We know time is short and we want to provide as much education, comfort, and assistance as possible.
Thanks again for all you do!
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BK Books replied:
Hi Kim, good for you and your hospice. I like how you are making services known and available. Thank you for sharing. Blessings to you in the good work you are doing. Barbara
Susan
Thank you so much for “ By Your Side” and all of your booklets for Hospice Education. As a Hospice Chaplain for 25 years , (now retired) I kept quite a few of each in my car to provide for families and they always commented about how helpful they were. We always told the families if they had questions that we were there to answer them to the best of our ability. In each hospice I worked for we always admitted within 24 hours of referral unless there were circumstances beyond our control. 2 weeks is unacceptable!
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BK Books replied:
Hi Susan, I’m glad you mentioned and like “By You Side”. Family caregivers need written instructions on how to provide care a well as guidance in signs of approaching death. Blessings to you for your years of service. Barbara
Thank you so much for “ By Your Side” and all of your booklets for Hospice Education. As a Hospice Chaplain for 25 years , (now retired) I kept quite a few of each in my car to provide for families and they always commented about how helpful they were. We always told the families if they had questions that we were there to answer them to the best of our ability. In each hospice I worked for we always admitted within 24 hours of referral unless there were circumstances beyond our control. 2 weeks is unacceptable!
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BK Books replied:
Hi Susan, I’m glad you mentioned and like “By You Side”. Family caregivers need written instructions on how to provide care a well as guidance in signs of approaching death. Blessings to you for your years of service. Barbara
Shyam
I volunteer at a Hospice in Delhi , india , called Shanti Avedna.
As soon as we get a call, referral, we ask them to send some basic papers on WhatsApp. An if found proper , we request them to com right away or at most if it’s past admission time of 9 am to 4 pm , then next day.
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BK Books replied:
Hi Shyam, thank you for sharing. It is interesting how you use WhatsApp to speed up the referral.
Blessings to you and Shanti Avedna for the good work you are doing. Barbara
I volunteer at a Hospice in Delhi , india , called Shanti Avedna.
As soon as we get a call, referral, we ask them to send some basic papers on WhatsApp. An if found proper , we request them to com right away or at most if it’s past admission time of 9 am to 4 pm , then next day.
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BK Books replied:
Hi Shyam, thank you for sharing. It is interesting how you use WhatsApp to speed up the referral.
Blessings to you and Shanti Avedna for the good work you are doing. Barbara
Cheryl Ferguson MSW
Our admission team is generally out the same or next day from a referral with a social worker for the registration and the admitting nurse following same day . Also our admissions is 7 days a week and our durable medical equipment is same day delivery. I am a homecare social worker and my new patient was admitted on Tuesday and I visited on Wednesday as well as the other disciplines. I think the problem might be lack of staff. We have 3 admission social workers and 9 homecare and facility social workers so we cover admission and NHPCO 5 day initial assessment 7 days a week and our nurses and spiritual care counselors do the same. I’ve worked for Hospice for 20 years we have an amazing team of professionals.
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BK Books replied:
Cheryl, I LOVE you admission process! Thank everyone at your agency for the good work you are doing. This is a protocol all agencies would be wise to follow. Blessings to all of you for the good work you are doing. Barbara
Our admission team is generally out the same or next day from a referral with a social worker for the registration and the admitting nurse following same day . Also our admissions is 7 days a week and our durable medical equipment is same day delivery. I am a homecare social worker and my new patient was admitted on Tuesday and I visited on Wednesday as well as the other disciplines. I think the problem might be lack of staff. We have 3 admission social workers and 9 homecare and facility social workers so we cover admission and NHPCO 5 day initial assessment 7 days a week and our nurses and spiritual care counselors do the same. I’ve worked for Hospice for 20 years we have an amazing team of professionals.
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BK Books replied:
Cheryl, I LOVE you admission process! Thank everyone at your agency for the good work you are doing. This is a protocol all agencies would be wise to follow. Blessings to all of you for the good work you are doing. Barbara
Lauren
The other issue is providers not talking with the patient or families about hospice until almost too late. My mother’s cancer center completely dropped the ball there. I had to beg them to talk to my mother about hospice who was having intractable nausea and immense pain and couldn’t really eat and had blood sugars in the low 40s and high 30s for at least a couple of weeks. It was clear she was dying. From the start if her diagnosis, she should have been on hospice (she only made it 2.5 months from diagnosis with a rare and mean cancer). I had to call and tell the palliative NP that she had to have the talk with my mom at her appt the next day. She decided to go on hospice at that appt and the next morning, a nurse came for an intake and saw that she couldn’t be managed on home hospice. Luckily they had a wonderful nearby facility. She was there that same afternoon, became unresponsive two days later and died a week after arriving. What would have happened had I not advocated? My mom deserved so much better from her providers. Luckily she had my brother and myself taking care of her. This was three years ago and I’m still just as bothered by no one having a hospice talk until I begged and she died one week later. Ugh.
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BK Books replied:
Lauren, I am so sorry your medical provider did not have the courage to address end of life care with you and your mother. This is what happens when focus of care is on the disease rather than the person. Blessings to you! Barbara
The other issue is providers not talking with the patient or families about hospice until almost too late. My mother’s cancer center completely dropped the ball there. I had to beg them to talk to my mother about hospice who was having intractable nausea and immense pain and couldn’t really eat and had blood sugars in the low 40s and high 30s for at least a couple of weeks. It was clear she was dying. From the start if her diagnosis, she should have been on hospice (she only made it 2.5 months from diagnosis with a rare and mean cancer). I had to call and tell the palliative NP that she had to have the talk with my mom at her appt the next day. She decided to go on hospice at that appt and the next morning, a nurse came for an intake and saw that she couldn’t be managed on home hospice. Luckily they had a wonderful nearby facility. She was there that same afternoon, became unresponsive two days later and died a week after arriving. What would have happened had I not advocated? My mom deserved so much better from her providers. Luckily she had my brother and myself taking care of her. This was three years ago and I’m still just as bothered by no one having a hospice talk until I begged and she died one week later. Ugh.
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BK Books replied:
Lauren, I am so sorry your medical provider did not have the courage to address end of life care with you and your mother. This is what happens when focus of care is on the disease rather than the person. Blessings to you! Barbara
Diana Gainer
I so agree. So many people I know resist the idea of hospice because they feel it’s a kind of betrayal of their loved one, it’s saying they’ve given up. And I’m saying it’s not that, it’s HELP for the caregiver, HELP for your loved one at this time when things are so hard. And if your loved one doesn’t die that’s okay! People can be taken off of hospice if they get better. (I’m secretly thinking, ‘We know your loved one isn’t getting better.’ But somehow we can’t admit it.)
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BK Books replied:
Hi Diana, I so agree. Thank you for sharing so clearly. Blessings! Barbara
I so agree. So many people I know resist the idea of hospice because they feel it’s a kind of betrayal of their loved one, it’s saying they’ve given up. And I’m saying it’s not that, it’s HELP for the caregiver, HELP for your loved one at this time when things are so hard. And if your loved one doesn’t die that’s okay! People can be taken off of hospice if they get better. (I’m secretly thinking, ‘We know your loved one isn’t getting better.’ But somehow we can’t admit it.)
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BK Books replied:
Hi Diana, I so agree. Thank you for sharing so clearly. Blessings! Barbara
Helen Weld
Yes, the agency I work with in Maine strives for same day admission/evaluation or definitely within 24 hours. What can be difficult is when some of the referrals come in way too late. Upon arrival to do the Start of Care visit, sometimes the patient is actively dying and it is extra challenging.
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BK Books replied:
I know Helen, have had that happen way too often. Had a gentleman actually die as I walked in the door. Blessings to you in the work you are doing. Barbara
Yes, the agency I work with in Maine strives for same day admission/evaluation or definitely within 24 hours. What can be difficult is when some of the referrals come in way too late. Upon arrival to do the Start of Care visit, sometimes the patient is actively dying and it is extra challenging.
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BK Books replied:
I know Helen, have had that happen way too often. Had a gentleman actually die as I walked in the door. Blessings to you in the work you are doing. Barbara
Beth
Barbara,
I couldn’t agree more. The goal of my hospice company is to do an admission within four hours of the referral? Do we always reach that goal? No. But we do about 40% of the time. The other 60% of the time is usually within 24 hours. If it is delayed longer than that, it is usually because we are awaiting discharge from a hospital or placement in a local faci
lity or that the family wants to wait for a certain day when they are more readily available.
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BK Books replied:
Yes, Beth, good for your hospice. This is the kind of timing that provides good care. Blessings to you in the work you are doing. Barbara
Barbara,
I couldn’t agree more. The goal of my hospice company is to do an admission within four hours of the referral? Do we always reach that goal? No. But we do about 40% of the time. The other 60% of the time is usually within 24 hours. If it is delayed longer than that, it is usually because we are awaiting discharge from a hospital or placement in a local faci
lity or that the family wants to wait for a certain day when they are more readily available.
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BK Books replied:
Yes, Beth, good for your hospice. This is the kind of timing that provides good care. Blessings to you in the work you are doing. Barbara
Natalie
Amen, the sooner the better! My 97 year old Mom lived with me, decreasing her eating while increasing her sleep. That’s what had me bring her to the doctor. Fast forward to a referral to Hospice. The nurse showed up, ordered a hospital bed which was delivered 2 hours later. A home health aide was here the following morning with more than enough supplies! She encouraged me to have coffee or do whatever I needed to do for myself. Frequent visits from Nursing including weekends, social worker visits, access to a chaplain. Many conversations about my Mom, what kind of life she lived, things like that. I learned so much from those Hospice angels about end of life that I’d share with my adult children. I wish Hospice was contacted earlier but I had no idea what my Mom was going through, nor did I realize how much help Hospice would be to me.
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BK Books replied:
Hi Natalie, you had what I want for all hospice patients. Blessings to you, your family and the hospice that took should good care of you. Barbara
Amen, the sooner the better! My 97 year old Mom lived with me, decreasing her eating while increasing her sleep. That’s what had me bring her to the doctor. Fast forward to a referral to Hospice. The nurse showed up, ordered a hospital bed which was delivered 2 hours later. A home health aide was here the following morning with more than enough supplies! She encouraged me to have coffee or do whatever I needed to do for myself. Frequent visits from Nursing including weekends, social worker visits, access to a chaplain. Many conversations about my Mom, what kind of life she lived, things like that. I learned so much from those Hospice angels about end of life that I’d share with my adult children. I wish Hospice was contacted earlier but I had no idea what my Mom was going through, nor did I realize how much help Hospice would be to me.
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BK Books replied:
Hi Natalie, you had what I want for all hospice patients. Blessings to you, your family and the hospice that took should good care of you. Barbara
Leslie
We received the “Gone from my sight” when my father was in hospice. The information was very helpful. Will check the others for my relative dealing with a family member with A.
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BK Books replied:
Hi Leslie, Does "A "stand for Alzheimers? If so you may find How Do I Know You helpful. Blessings to you and your family. Barbara
We received the “Gone from my sight” when my father was in hospice. The information was very helpful. Will check the others for my relative dealing with a family member with A.
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BK Books replied:
Hi Leslie, Does "A "stand for Alzheimers? If so you may find How Do I Know You helpful. Blessings to you and your family. Barbara
Linda
I agree that within 24 hours day or night is correct.
A month! Took an entire month from doc’s referral to sign up for my home health patient’s grandfather, who lived in the home. My agency’s side service of hospice said they had to get papers. Horrid. But the families don’t know any better.
It IS so nice when hospice is done correctly.
Bless you for all you do.
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BK Books replied:
Hi Linda, I am so sorry for your experience. It is because of situations like yours that I wrote this blog. It is happening way too often. Blessings! Barbara
I agree that within 24 hours day or night is correct.
A month! Took an entire month from doc’s referral to sign up for my home health patient’s grandfather, who lived in the home. My agency’s side service of hospice said they had to get papers. Horrid. But the families don’t know any better.
It IS so nice when hospice is done correctly.
Bless you for all you do.
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BK Books replied:
Hi Linda, I am so sorry for your experience. It is because of situations like yours that I wrote this blog. It is happening way too often. Blessings! Barbara
Kim Taylor
I want to say an enormous Thank you for the wonderful gift of the By your side guide. It has been such a gift of helping me with the last part of my father’s transition and also to give me the strength, support and better understanding. Your book has touched me forever. Thank you again 🙏
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BK Books replied:
Hi Kim, thank you for the kind words about my book. Am so pleased it has been helpful for you during this challenging time. Blessings to you and your family! Barbara
I want to say an enormous Thank you for the wonderful gift of the By your side guide. It has been such a gift of helping me with the last part of my father’s transition and also to give me the strength, support and better understanding. Your book has touched me forever. Thank you again 🙏
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BK Books replied:
Hi Kim, thank you for the kind words about my book. Am so pleased it has been helpful for you during this challenging time. Blessings to you and your family! Barbara
Debbie Walter
Our Hospice experience began several days before my husband was transported home. The hospital bed arrived before we did and 2 Hospice ladies came the next morning.
The only thing that wasn’t covered in the conversations before hand was the need for twin size sheets for the bed,
which we didn’t have.
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BK Books replied:
Hi Debbie, I am so pleased to hear of your positive experience with a hospice. This is how all hospices should be. Blessings! Barbara
Our Hospice experience began several days before my husband was transported home. The hospital bed arrived before we did and 2 Hospice ladies came the next morning.
The only thing that wasn’t covered in the conversations before hand was the need for twin size sheets for the bed,
which we didn’t have.
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BK Books replied:
Hi Debbie, I am so pleased to hear of your positive experience with a hospice. This is how all hospices should be. Blessings! Barbara