Dear Barbara,
What suggestions do you have in overcoming the changes we see in hospice and healthcare today? It doesn't look like it did 20 years ago. How do we maintain balance while keeping patients centered?
Hospice originated outside of the medical model. It met needs the medical establishment did not. Gradually, ever so slowly, hospice agencies have been absorbed into that medical model and the original concept has morphed into a business. With any business, money becomes an important factor.
With hospice outside of the medical model, in the hands of not-for-profits, it struggled to keep its doors open but had the time to devote to its patients and families.
Is there a workable medium? I’m not sure. End of life doulas are now working outside of the medical model, providing care that hospice is challenged in providing. However, EOL doulas are struggling with reimbursement issues just like hospices did in the beginning.
I’m wondering if these two groups of end of life workers could come together and meet each other's needs. For hospice, increased time spent with patients and families; for EOL doulas, reimbursement.
In the ideal picture, the goal is the patient’s death. Everything that is done before the death is preparation for the actual moment death occurs. Everything after the death gradually eases the relationship between the family and hospice.
Yet in today’s hospice, most family members are alone when their special person dies. They then call the hospice to do a pronouncement visit, which tends to be short and without a lot of support and counseling given.
What if hospices used EOL doulas for the actively dying visit? The doula would be with the family and guide them through the moment of death, making the pronouncement call and staying until the body is gone. The family would not be alone, would be supported and guided in having a sacred experience which becomes a sacred memory they will carry with them forever. By the way, being with the patient and family at the moment of death was the original goal of hospice services.
You might ask, “how is this paid for when a visit could, and will likely be hours long?” Have the doulas work in a salaried position rather than hourly as most hospice employees work. Overtime does not become an issue. There are obviously details to be worked out, but I’m giving something to think about. I’m suggesting a more comprehensive way to care for the dying.
I know some hospices have Eleventh Hour volunteers. I applaud the creative use of volunteers BUT REALLY why is the most important moment in end of life work given to volunteers?
Something More… about Can We Revive the Essence of Hospice?
If you are caring for a person who is facing end of life, I want to suggest you get support from By Your Side; A Guide for Caring for the Dying At Home. Taking care of someone as the end of their life approaches is not the same as taking care of someone who is going to get better.
This specific knowledge and guidance won’t take away the sadness you carry, but it will give you the confidence to know that you are providing the best care possible for your special person.
10 comments
Hello Barbara, thank you for sharing your wonderful insights. I live in Western Australia sadly in Perth we do not have a tradition of community hospice. I to see that doulas have much to offer in the EoL space. We have a number of doulas however the demand for their service is very low. Slowly we are trying to work with the medical sector to show how we can work in partnership and improve the experience of those dying and their love ones. It is slow and frustrating work.
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BK Books replied:
Hi Shane, thank you for sharing. It seems accepting end of life care is a universal problem. Keep trying. Blessings to you in the work you are doing. Barbara
I didn’t know i could chose a hospice. I used Kaiser which if more on theedical. They were adequate for my dying husband, but no support for me as the sole caregiver. Thankfully a very good freind was there at the actual passing. I needed help at that time and a knowledgeable doula would have been a godsend. No hospice person was there at the time of passing,nor wete they there when the funeral home came. I didn’t know about eol doulas. Your Gone from my Sight was my only comfort, even with Kaiser’s socalled hospice. They shouldn’t be allowed to practice. My husband passed almost 5 years ago.
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BK Books replied:
Hi Sally, I am sad to hear of your unsatisfactory experience with hospice. I am hearing stories like yours way too often. Thank you for sharing. Blessings! Barbara
Thank you for sharing your wise thoughts, Barbara. And thank you for the piece you wrote that is on the National End-of-life Doula Alliance resources page that discusses this further. As a former hospice nurse and pioneer in the EOL doula movement, I wholeheartedly hope that EOLDs can remain independent, outside the medical model, and that we can increase alternative community funding options, so that all persons can benefit from the care and support EOLDs provide. You are the best, BK!
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BK Books replied:
Merilynne- What a treat to hear from you! It’s been too long, Thank you for your kind words. Blessings to you and the work you are doing to train doulas and support families, Barbara.
I’m a hospice RN/social worker at a very new inpatient unit. I also have my CT through ADEC. I did home visits for 7 years part time. My main career of 35 years was in Labor and Delivery where I was the Perinatal Bereavement “Person”. I could’ve been the educator, or trainer but those jobs require more $$$. So I did what I could within my RN role. The nationwide corporation I worked for would not even provide plaster casts for footprints or memory items. 7 years out and I still make hats and blankies for our teeniest pregnancy losses as well as full term stillbirths. My director used the words “there is no money in bereavement”. That is the bottom line in the US. People who want to make money from supporting bereaved people had best look elsewhere, in my opinion. Because it is just not really there. And won’t be any time soon, if anything it will worsen.
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BK Books replied:
Eileen, Thank you for sharing. Blessings to you in the work you are doing. Barbara
As a past hospice volunteer, I have sat vigil for many a patient during active dying. I appreciate the historical perspective you provide that the original mission of hospice was to be present at time of death and at best, its volunteers today (if they can source them).
I like your vision. As a death doula, I am making my way to build my business. Having entrepreneurial chops is essential and not every budding doula has that. As much as reimbursement or being able to find full time employment as a death doula would be helpful – I am very grateful that I am independent and not swallowed up by the medical model. After 200 volunteer hours in hospice, it became clear that the model does not easily allow for the deeper work that I bring to clients and my guess is that the medical model would reject the deeper dive offering.
As I build my business, it is my intention to help independent death doulas by inviting them to work with me and pay them as independent contractors.
My vision is around building community death care and putting death doulaship on the map!
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BK Books replied:
Hi Jen, good for you! I support you in your vision. Blessings to you in the work you are doing. Barbara
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