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
11 comments
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.
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.
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.
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.
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.
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.
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.)
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.)
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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 🙏
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 🙏
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.
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.