November is National Hospice month. How many years have we been recognizing this special time? We promote in our communities the services hospice provides, get newspapers to write articles about how great hospice is, honor our staff and volunteers, and then Thanksgiving comes, Black Friday shopping comes, November is over and we go back to our usual.
What really have we accomplished in this month? Have we educated the community more thoroughly than with our regular Senior Center or church presentations that we do on a regular basis? Have we reached more of the community or physicians about when to refer to hospice? Have we opened the door to more education about the signs of approaching death? Have we reduced the fear and misinformation that is associated with bringing a person onto hospice, with narcotic use or addressed the belief that hospice kills, that our loved one will die sooner if on the hospice program?
I’ve been involved in the hospice philosophy of care since it arrived to this country from England. I was providing end of life care for patient’s and families when no one could even pronounce the word, before Medicare began reimbursing for services, when there was no wage an hour to say how many hours a nurse or social worker could work, when, for the staff, working was a avocation. I worked for the hospice that had a stash of hospital beds, walkers and wheelchairs in a garage that we washed and delivered to patient’s homes. We used mayonnaise jars for urinals and had a charity group make bed pads from newspapers and sewn together sheets. I spent hours at the bedside as death approached. Slept on the sofa or chair by the bed in many a home. My goal was to be at the bedside with the patient and the family and significant others at the moment of death. My work was to neutralize the fear dying presents and to be there. That was the hospice I worked in.
I was one hospice of many that sprung up through this country in the ’70 and ’80’s. As an old commercial used to say “We’ve come a long way, baby”. We have Medicare regulations that insures consistency of care. We now have service reimbursement. Our employees are protected with wage an hour, overtime payment, health insurance, and a reasonable salary. We have gone from literally knowing nothing about how to provide end of life care to teaching palliative and terminal care in our nursing and medical schools, even universities help us with masters degrees and doctorates in the areas of end of life.
Here is my question - with all the growth we have made from, let’s say the mid 1970s, when the hospice concept was introduced why are people hesitant to accept hospice services? Why are physicians still not referring to hospice until days before death. Why do we feel lucky if we get a referral a few weeks before death occurs instead of several months. Why do people now believe that hospice kills their people? Why are most families alone at the moment of death?
We’ve had over 40 years of providing end of life care to the community. And yes, it is acknowledgment of our work that there is a national Hospice month but from where I stand we still have a lot of community education and healthcare professional education to provide.
All this said I want to close with a thank you and a tribute to all the employees, CNA, chaplains, social workers, nurses, volunteers and yes, doctors who tirelessly work for hospices. People who are living their dream of working in end of life. People who don’t just see their job as work but as their avocation. You are one’s we honor this month. You are the ones who give from your hearts to provide guidance, to neutralize fear, to make a difference in people’s lives and deaths. I salute you!
Something More About... Hospice~ What Have We Accomplished?
I always go back to the basics, families need to know the signs of approaching death. Knowledge reduces fear. If nurses, social workers, chaplains, EOL doulas... can educate the family about what they can expect when their loved one is unfixable, the dying experience will be better for everyone. It could even be sacred.
10 comments
Eva
Hi Barbara,
This article was right on point. I love all of the work you do and provide for all. You are an amazing educator and a very compassionate woman. I am grateful and blessed that I have guidance. I am an EOL Doula and your information has helped me out a lot, so THANKYOU.
Hi Barbara,
This article was right on point. I love all of the work you do and provide for all. You are an amazing educator and a very compassionate woman. I am grateful and blessed that I have guidance. I am an EOL Doula and your information has helped me out a lot, so THANKYOU.
Susan A Flow
It’s fear, it’s loss, it’s grief and all of that comes back to fear again and then the primary emotion that encompasses all the above: anger. Anger makes people back away. It takes courage to compassionately acknowledge these manifestations and to offer a different perspective.
I always carried hospice flyers with me in home care nursing. Even in the most chaotic emotional situations I would say: “at some point you may find this information helpful and these people will never let you be alone through this sadness.” How many times that one sentence opened doors.Barbara, I acknowledge your gift and leadership. All of us who touch peoples lives in some fashion should continue to follow your example.
It’s fear, it’s loss, it’s grief and all of that comes back to fear again and then the primary emotion that encompasses all the above: anger. Anger makes people back away. It takes courage to compassionately acknowledge these manifestations and to offer a different perspective.
I always carried hospice flyers with me in home care nursing. Even in the most chaotic emotional situations I would say: “at some point you may find this information helpful and these people will never let you be alone through this sadness.” How many times that one sentence opened doors.Barbara, I acknowledge your gift and leadership. All of us who touch peoples lives in some fashion should continue to follow your example.
Barbara
Hi Katie, Google End of Life Doulas and you will find many doula certification programs. Tarron Estes, Deanna Cochran, Marilynne Rush, are a few incredible ladies in the end of life doula moment with certification teaching programs. Check out NEDA (National End of life Doula Alliance) for standards and offerings. Blessings in the work you are doing. Barbara
Hi Katie, Google End of Life Doulas and you will find many doula certification programs. Tarron Estes, Deanna Cochran, Marilynne Rush, are a few incredible ladies in the end of life doula moment with certification teaching programs. Check out NEDA (National End of life Doula Alliance) for standards and offerings. Blessings in the work you are doing. Barbara
Barbara
Hi Patti, I never turn down a hug! Thanks for sending one. Blessings! Barbara
Hi Patti, I never turn down a hug! Thanks for sending one. Blessings! Barbara
Pamela Jean Harper
Spot on as ever, Barbara!
Spot on as ever, Barbara!
Patti Schaub
Dear Barbara,
Thank YOU for so much that YOU have done! We met probably 10 years ago at the Senior Center in West Covina CA when I was facilitating several Alzheimer’s Support Groups.
We’re now retired, living in a senior retirement community & I’m thankful to you that I’m still able to promote hospice & your books. You’re touching so many lives thru so many people just like me who are great fun to be able to help those who don’t even know they are in need.
Please let me know that you’ll take a moment to pat yourself on the back & accept a long-distance hug from a thankful admirerer
Dear Barbara,
Thank YOU for so much that YOU have done! We met probably 10 years ago at the Senior Center in West Covina CA when I was facilitating several Alzheimer’s Support Groups.
We’re now retired, living in a senior retirement community & I’m thankful to you that I’m still able to promote hospice & your books. You’re touching so many lives thru so many people just like me who are great fun to be able to help those who don’t even know they are in need.
Please let me know that you’ll take a moment to pat yourself on the back & accept a long-distance hug from a thankful admirerer
Susan Barber
Thank you Barbara, and on this second to last day of November, National Hospice Month, O am grateful to all the work you have done to help peole understand that death is a natural process, that death has a life of it’s own, and our bodies at end of life has a widson as ancient as the trees, and as wise as any guru…and we seem, as a country, to move further and further away from this understanding as a natural process, as’medicine’ and ‘health care’ take over…providing little solace and at times even less understanding of the death process. Death has become the enemy, a failure, an incident, an expiration…not an opportunity for transformation (though why wait til our deathbed for that!), a place of healing and coming together before the great mystery that death is.
In the 30+ years I have been navigating end of life care, in some of the many forms it has taken, from early days working with Stephen & Ondrea Levine during the AIDS epidemic here in San Francisco, and understanding what opportunities are present if we navigate the end of life experience from the lens of possibilities in a Conscious Living/Conscious Dying approach, to the present day that is fraught with more moving health insurance pieces than most of us can understand…the relationship of the medical community and death remains estranged, at best…divorced, and not amicably, at worst…
To all of us that have stuck with this, and believe deeply in the possibility that death has to inform our life, and that, as Elisabeth Kubler Ross said 50 years ago in On Death & Dying, that the dying have so much to teach the living, if only the living would listen…
Thank you Barbara, and on this second to last day of November, National Hospice Month, O am grateful to all the work you have done to help peole understand that death is a natural process, that death has a life of it’s own, and our bodies at end of life has a widson as ancient as the trees, and as wise as any guru…and we seem, as a country, to move further and further away from this understanding as a natural process, as’medicine’ and ‘health care’ take over…providing little solace and at times even less understanding of the death process. Death has become the enemy, a failure, an incident, an expiration…not an opportunity for transformation (though why wait til our deathbed for that!), a place of healing and coming together before the great mystery that death is.
In the 30+ years I have been navigating end of life care, in some of the many forms it has taken, from early days working with Stephen & Ondrea Levine during the AIDS epidemic here in San Francisco, and understanding what opportunities are present if we navigate the end of life experience from the lens of possibilities in a Conscious Living/Conscious Dying approach, to the present day that is fraught with more moving health insurance pieces than most of us can understand…the relationship of the medical community and death remains estranged, at best…divorced, and not amicably, at worst…
To all of us that have stuck with this, and believe deeply in the possibility that death has to inform our life, and that, as Elisabeth Kubler Ross said 50 years ago in On Death & Dying, that the dying have so much to teach the living, if only the living would listen…
Teresa Vance
Barbara,
A year ago a wonderful woman, whose husband had been in hospice care several years earlier, approached me about hospice care for my dad. I was angry. I said my dad isn’t dying. She told me that hospice care helps someone with a chronic disease have an easier time dealing with life. My sisters and I talked it over and called. I am so thankful I got the information. We received your book, “Gone from my sight”, it helped us in dealing with dads illness, and the nurse who came to see dad took the time to explain to us that Dad would bounce back from setbacks, he would not reach the level that he was at before. My dad passed away January 3, 2018 in his home, without fear. His hospice nurse Christopher came immediately to help move him to the bathroom and clean him up. The compassion and care that was given to my dad and to us made dads passing so much easier. Compassus was wonderful being there whenever dad needed them, or my sisters and myself.
I wanted to thank you for your wonderful booklet, I have shared it with others since dad passed. We miss him everyday, but thanks to the wonderful hospice workers and your booklet our time with him was easier and we could accept his passing. Hospice workers are truly angels on earth, and I, for one will sing the praises of them to anyone who is dealing with trying to accept the possibility of losing a loved one.
You are an extra special angel here on earth.
Thank you,
Teresa Vance
Barbara,
A year ago a wonderful woman, whose husband had been in hospice care several years earlier, approached me about hospice care for my dad. I was angry. I said my dad isn’t dying. She told me that hospice care helps someone with a chronic disease have an easier time dealing with life. My sisters and I talked it over and called. I am so thankful I got the information. We received your book, “Gone from my sight”, it helped us in dealing with dads illness, and the nurse who came to see dad took the time to explain to us that Dad would bounce back from setbacks, he would not reach the level that he was at before. My dad passed away January 3, 2018 in his home, without fear. His hospice nurse Christopher came immediately to help move him to the bathroom and clean him up. The compassion and care that was given to my dad and to us made dads passing so much easier. Compassus was wonderful being there whenever dad needed them, or my sisters and myself.
I wanted to thank you for your wonderful booklet, I have shared it with others since dad passed. We miss him everyday, but thanks to the wonderful hospice workers and your booklet our time with him was easier and we could accept his passing. Hospice workers are truly angels on earth, and I, for one will sing the praises of them to anyone who is dealing with trying to accept the possibility of losing a loved one.
You are an extra special angel here on earth.
Thank you,
Teresa Vance
Carol Alix
Good article. Your pamphlets and book have been a Godsend for me and others. I buy sets and give them to our friends and co-workers.
These guidelines provide so much information in advance of living through it.
And I recommend ‘The Final Act of Living’ to everyone…. it is amazing.
Thank you for making me and others realize that being with someone at the time they pass is a true honor.
Good article. Your pamphlets and book have been a Godsend for me and others. I buy sets and give them to our friends and co-workers.
These guidelines provide so much information in advance of living through it.
And I recommend ‘The Final Act of Living’ to everyone…. it is amazing.
Thank you for making me and others realize that being with someone at the time they pass is a true honor.
Katherine Hlavac
I am a private caregiver. I started my personal pay business 10 years ago. I am a very strong supporter of Hospice and have a great understanding end of life which I pass to my clients and their families.
I only learned the End of Life Midwife term with a recent client.
Does Hospice offer and specific training in regard to this title/term. I am interested in learning more. Thank you🙏🏻
I am a private caregiver. I started my personal pay business 10 years ago. I am a very strong supporter of Hospice and have a great understanding end of life which I pass to my clients and their families.
I only learned the End of Life Midwife term with a recent client.
Does Hospice offer and specific training in regard to this title/term. I am interested in learning more. Thank you🙏🏻