It isn’t until you walk in another’s shoes that you really know what something feels like. As most of you know my husband was on hospice services recently and died. Here are some thoughts after being on the other side of hospice, on the receiving side.
*Once we get up the courage to call hospice, we want to see you immediately. Actually, we needed to see you, hear your guidance and advice, and receive your services yesterday. Families tend to be overwhelmed and have trouble coping when they reach the point of asking for help. Hospice is that help. Don’t make us wait. Within 24 hours, make that much anticipated home visit.
*Get to know us and hear our story before you introduce all the required paperwork that the computer needs signatures for. After that initial show of computer and official business NEVER let us see your computer again. You can take discrete notes, then get in your car, drive around the corner or go to a 7/11 parking lot and do the charting there. Your goal is to create a relationship that brings comfort, guidance, and education. It is not to have an air of “officialdom.” You can be professional, open, direct, easily understood, instructional, and gentle without a computer in front of you. It is difficult to get to friendship, personhood, and support with a computer on your lap.
*Dying and death calls are the goal of the work hospice does. Everything, all your words and services, lead up to the moment of death. The patient’s death is what your work is all about, YET it seems that fewer and fewer hospices are actually with the family at the moment of death.
*A pronouncement visit is not a ten minute, in the door, look at the body and out the door visit. It is a “Tell me what happened. How are you doing? What are you thinking?” kind of visit. It is time to straighten the room, tidy the body and gather those present for a final goodbye. It is a "wait for the funeral home to come" visit. While waiting, use that time to offer guidance and comfort. When the funeral home leaves with the body, straighten the room, make the bed, put a memento on the pillow and leave the light on. This entire visit is creating a sacred finish to a life. Through this support you are creating a sacred memory the family will carry with them forever. If there was no guiding support during the actual death, then this kind of death call will help ease the pain the experience has created and provide the kind of support and guidance hospice is intended to provide. It is what we do—-comfort.
*I would like to see the primary care nurse, social worker, and even the home health aide make a home visit towards the end of the week following the death. This will give closure for the family with the hospice staff. It is an opportunity to ask final questions, to express thoughts about all that has happened and to say goodbye. This will give closure to not just the family of the patient, but closure to the nurse, social worker, and home health aide so they can move on to the next and the next.
As I do, I am giving you something to think about.
Something More… about Being On The Receiving Side of Hospice
Hospice workers face unique challenges as they care for the dying and their famiies. Support and self care are crucial to these remarkable caregivers. I encourage hospice agencies to have an in-service with their team at least once a year where they watch my dvd/vimeo film, Care For The Caregiver together. Ideally each member of the team would be given the booklet You Need Care Too to further support the team.
23 comments
My heart goes out to you in your loss. I have been a caregiver for both of my parents who died on hospice and I understand the points you make. Subsequently, I worked for a hospice that mandated having a computer open to chart during the visit, even during an admission, in an effort to force nurses to see more patients during a shift. While they talk a good game, their focus is not the patient, but on the bottom line. I struggled with this and left that employment for this and many other reasons. However some hospices do mandate charting during a visit. Medicare only pays for time at the bedside.
———
BK Books replied:
Hi Lori, I’m sorry you worked for a more business focused hospice. There are heart centered hospices you just have to search for them. Blessings! Barbara
Barbara, so sorry for your loss.
———
BK Books replied:
Thank you, Diana. Blessings! Barbara
You are so right. I lost my husband 16 years ago due to a brain tumor. Hospice was there, but did not give any spiritual support. I’m currently volunteering at hospice in Anderson sc and making bereavement calls with hospice in NY. I do believe the spiritual part should be for the client but more for the caregiver. They take more than people realize they take. Paperwork can wait until later, but people need the support at the time of death, not answering questions.
———
BK Books replied:
Hi Diana, I’m sorry you did not receive the care you were wanting when your husband was in hospice. I hope you found support in your grief journey—from church and /or community. Blessings! Barbara
When my daughter, Laura died
8 1/2 years ago under Hospice care, I was so dissolutioned by the lack of care provided. Laura was married, so she and her husband were the ones who made the arrangements with hospice. She died at home, they did provide a hospital bed, oxygen and other end of life comfort items. It was the 4th of July weekend that her dying process took place. As her body got weaker, her bowels began to move. We were mortified as to how to clean her up, so Laura’s husband called Hospice to see if someine could come to help us. He was told no nurse was available, so she explained what we, as her family, needed to do to ckean her up each time it happened. It was awful to say the least because we were already grieving and in a state of shock. Then when Laura died 2 days later, a nurse came to take care of the arrangements. She was not unkind, but had to find every Rx pill that had been dispensed. Laura’s husband was looking through cupboards trying to locate a couple of unaccounted for pills which he finally found in the bathroom medicine cabinet. The nurse asked me to witness her flushing the pills down the toilet. So through my tears, I watched her. The whole experience was horrible and I vowed never to have to deal with Hospice again.
———
BK Books replied:
Oh Joyce, I am so sorry. Your experience was not what hospice is supposed to be. I hope you reported this to the Hospice director and even to medicare.gov. We need to let our opinion of care be known. It is how we can get change so others recieve better care. Blessings! Barbara
Barbara, first my sympathies to you on the loss of your husband and partner. Second, I celebrate your courage and voice to speak now from experience. I was a hospital chaplain when my husband was dying with hospice services. Experience is a worthy teacher and my own experience changed and informed how I ministered to patients and families. I have used your booklets/information for years to support end of life care. Thank you for your ministry.
———
BK Books replied:
Jill, you are so right. It really isn’t until we walk in similar shoes that we truly comprehend the entirety of something, the mental and the emotional. It can make us better caregivers. Blessings to you in the work you are doing. Barbara
Leave a comment