I’m a __(hospice administrator/nursing manager/quality assurance director/etc.)_ and I am always nervous about our CAHPS Hospice Satisfaction Survey. Can you help us with our readiness for the hospice survey?
We sure can! Our passion and goal is to help you equip your multidisciplinary team so thoroughly, with great resources everyone can use, that you don’t have to get stress ulcers thinking about it. You have enough to do as it is, let us help you with this part.
Using our materials can give you the best hospice teaching tools, patient education materials and patient/family resources in the industry. Our publications are up to date for the realities of the 21st century, hospice specific and written to help you streamline your hospice patient satisfaction survey process. Just as your nurse has her bag of tools and checks the vitals each visit, dispensing wisdom and experience, Nature Gave Us Butterflies will just become another tool she can use to provide the best care, and provide you with the confidence you need to feel good about the survey. Every member of your team, paid staff and volunteer, can use the same materials to address your readiness for the hospice satisfaction survey.
We believe in you and in your hospice heart. We know you want to do a good job, for your patients, families and your team. We want to help you remember why you got into this business in the first place. Our products can help you do that.
Ok, but how are you doing to do that? We DO provide good care, and we care deeply about our patients and families. But our employees are human too, how do we train new staff to get up to speed and keep everyone on message so we provide consistent care and answers?
There’s no way any of us would sign up for this kind of work if we didn’t love it, have a heart for hospice, and want to do a good job for people, including our own colleagues. The nights of never-really-sleeping-above-a-doze-because-you-are-on-call, death visits at midnight on holidays, sitting in traffic in urban areas, and discerning fun directions in rural areas where your phone won’t work (“there’s no sign, just make a right on the dirt road, by the big oak tree near the bird house”), all come from doing a job you love and probably aren’t getting rich doing it. We all have to find a way to balance the number of stressors that come from loving what you do but also knowing you have to run it like a business. These resources are designed with that in mind.
Really, we’ve been there, and our products are the fruit of those experience. If you head over to the Why Our Publications Page, it will give you some great ideas for how to use our hospice and palliative care resources, from pre-admission all the way through bereavement services. That whole section describes the ways in which each discipline can use these resources so you are confident everyone is on message, providing not just great care, but quality information that is consistent, compassionate and understandable, all the time, from every staff member. We are also here to answer any questions you have, or how to use these products in every phase of hospice. Don’t hesitate to get in touch if you want to talk to us about it.
While you cannot specifically “teach to the test,” so to speak, you can make sure you are providing excellent care by using the CAHPS survey as a guide. These products are tangible ways to provide information on what to expect during the death and dying process, as well as what to expect in terms of what are common symptoms at end of life, what to do to manage them, as well as what is normal and natural as the body begins to shut down. The on-call staff can refer to specific pages in the book, and we are getting good feedback from hospice staff that it reduces anxiety in caregivers when they have the materials in hand to refer to, thus reducing on call visits.
We have some blog posts on this as well, if you want some more specific ideas.
We’ve used the same hospice education books since I started working in hospice, and they’ve been fine. Why should I make the change to your products?
We used those materials too, when started working in hospice in the 1990’s. We also used pagers for on-call, most of us did not have cell phones, and for most people, there was no way to look up hospice care online. There was very little regulation, very little centralized training or standards, and most cities only had a few hospices, if any at all.
As with the rest of the healthcare world though, hospice has undergone many changes since we all started off, dragging our paper charts behind us. About the only thing that has stayed the same in hospice since the 1980’s is patient education materials, and those old materials are simply not up to date for the current standards of the hospice industry. Additionally, there are no other end of life education materials on the market that are specific to hospice, palliative care, grief and bereavement services, or all the other specific needs of this specialized area of healthcare.
Deciding it was time to meet the challenge head on, we chucked our blue parachute-pants style 1980’s hospice booklets in the trash, and wrote our own patient education materials, hoping to bring this part of end of life care into the 21st century as well. While we were at it, we wrote it to address the regulatory standards and expectations of our time, for the hospice team as well as patients and families. These products are truly the new generation of hospice education materials, and we are honored to offer them to you and your organization.
Nature Gave Us Butterflies is the tangible result of our journey, as hospice professionals and as family members who have cared for loved ones in hospice. It is the only hospice specific booklet available in the current market, addressing the realities of hospice care directly. Used as a teaching tool, it addresses the needs of patients, families and the hospice staff, allowing the team to explain things in a way that is easy to understand, and as a tool to leave behind so the on-call staff can also teach from it. This beautiful booklet creates a conversation structure and teaching tool so the entire multidisciplinary team provides the same message and information about the patient’s condition, care and symptom management.
Additionally, we offer The Nature of Grief: Healing & Honoring the Seasons of Loss, which can be used from admission through bereavement, to provide emotional and spiritual support to the patient and family. This booklet is used by grief professionals in every field, but was written from the heart of hospice as well, with up to date theory, terminology and clinical information, all delivered in a soft and inviting manner.
We offer many products for the hospice team, to meet your needs and ease your regulatory burdens, from admission through the end of bereavement, and they are written to also specifically meet the needs of the patient and family, as well as the needs of the CAHPS survey.
I’m a hospice social worker-bereavement coordinator-volunteer coordinator, and I swear sometimes I don’t know which hat I’m wearing, but I’d love some help and new ideas. What can you do for me?
First, if you want to see Becky Wallace light up like a Christmas tree, put her in a room with a bunch of Bereavement Coordinators! We’ve walked more than a mile in your shoes, and will always be honored to have been part of such a beautiful process with people. We would love to help you out, and here’s what we’d suggest:
First, you can use both of our flagship booklets in Bereavement. Nature Gave Us Butterflies isn’t just for nurses, although they use it all the time and love it. You can use that book in a variety of ways, from pre-admission all the way through bereavement. For those folks who are admitted and then die so fast you don’t really have a chance to “do” much, and for the families who come back later and have guilt about what is probably just a normal part of the death and dying process, you can use Nature Gave Us Butterflies to explain what happened, and help people understand they did a good job under very trying circumstances, all while normalizing their grief.
You can also always use The Nature of Grief: Healing & Honoring the Seasons of Loss, our beautiful booklet written for the bereaved as well as grief professionals of all kinds. We also have a variety of other resources for Bereavement Coordinators, like our pocket guides and sympathy cards for the initial bereavement contact, anniversaries of the death, the patient’s birthday and so on. Some hospices are also telling us they all sign the Nature of Grief and send it out as the team sympathy card, instead of the usual initial greeting card to the family, as a way to introduce Bereavement Services. Others are using the booklets as a way to facilitate grief groups, and discuss anticipatory grief, as well as compounded grief and the different grieving styles. These booklets provide tangible emotional and spiritual support, from every member of the team, and can be used as conversation starters and guidelines for introverts or instrumental grievers, who may not want to sit and talk to you about their feelings all the time.
Hospice Volunteer Coordinators are telling us they are using both booklets to streamline their Volunteer Trainings, so they are on message with paid staff. Just like you can explain the process of death, dying, anticipatory grief and bereavement to patients and families, you can use these booklets to train new staff, paid and volunteer. Additionally, our 5 Heartfelt Requests of a Grieving Person pocket guides can be given to volunteers to hand out to others at Memorial Services and other gatherings, as well as a teaching tool.
I’m a hospice chaplain, and I love getting to do this, but sometimes I run out of new ideas too. What can you do for me?
Chaplains are an important source of comfort and knowledge for the patient and family. As spiritual care providers, many of our publications can augment the existential questions that chaplains address daily while patients and families come to terms with their end-of-life issues. Like Social Workers and Bereavement Coordinators, chaplains can use Nature Gave Us Butterflies as well as The Nature of Grief , noting it was written in a way that is spiritually inclusive, regardless of culture or religious tradition, or lack thereof. Because nature is a universal theme, we try to use it in all of our publications, in order to create resources anyone can use, in a way that is inclusive as well as soft and inviting. Our line of bereavement materials also has some all-purpose cards you can use to drop a note to a patient or family member, as well as a staff member for whom you may be providing some extra support after a rough day.
You can also use our booklets to make sure you are providing an answer to the question about meeting spiritual and religious beliefs that includes talking, praying and other ways of meeting needs, by using these booklets as conversation starters. By leaving these materials with the patient and family, you are providing support in a variety of ways, even for people who are not religiously inclined, but may be interested in discussing existential questions about their dying or grieving process.
We are currently working on a booklet for the spiritual needs of end of life care, and hope to have that published and to your desk by the fall of 2016. Stay tuned!
What is the difference between palliative care and hospice care, and what’s the difference between the standard edition and hospice version of Nature Gave Us Butterflies?
Hospice focuses on relieving symptoms and supporting patients with a life expectancy of months, not years. However, palliative care may be given at any time during a patient's illness, from diagnosis throughout the life cycle, and into hospice if desired. Hospice care includes palliation as well, but while both focus on pain and symptom management, hospice is designed for those who have a terminal diagnosis. Most hospices have a set of defined services, team members and rules and regulations, and hospice tries to visit you where you live, while stopping most forms of treatment of other diseases.
We are passionate about good end of life care but also palliative care in general. Everyone deserves good palliative care, in hospice or not, and that includes good pain management and symptom control, physically, emotionally and existentially. We believe well informed and educated staff, patients and families give people the best quality of life, no matter what. Knowing that, we made sure the Standard Edition of Nature Gave Us Butterflies has the same great information, but is written to be used by hospitals, oncology centers, nursing homes or other health care settings, as well as palliative care centers.
So for example, the language is in the hospice edition might say, “call your hospice nurse,” while the language in the standard edition might say, “call your healthcare provider,” to make it a bit more generic, but still maintain the integrity of the information. Not everyone who is at end of life signs into hospice, so we wanted to make sure the same kind of information about good symptom management and what to expect for end of life care was available to everyone.
You can also download Nature Gave Us Butterflies, Standard Edition on Amazon, for your own personal use or to have on your phone or tablet. It is also for download at Barnes & Noble, if that is your preference. We are always working to convert our other products to e-book as well, so feel free to shoot us an email or watch our blog for updates there as well.
Can other professionals use your resources, are is this really for hospices only? I’m a therapist/spiritual director but in private practice, not traditional healthcare. Can your products help me?
Anyone can use these resources! We worked in hospice for a long time and saw the gaps there, and wanted to meet that need by writing Nature Gave Us Butterflies, Hospice Edition. But the standard edition of that same publication is designed for anyone dealing with caregiving or interested in palliative care, care giving or end of life care. It is also available for download on our Amazon page or at the Barnes & Noble site for your nook here.
Therapists, grief groups, funeral homes, professors and professionals of all kinds are using our products. The Nature of Grief is written for anyone to use, professionally or personally. We are always expanding our line of products as well as translating products to e-book format and into Spanish, so if you have a request, suggestion or question, feel free to get in touch. We love feedback!
You two seem like you have been in the trenches for quite a while, but who are you really, and how did you end up doing this?
Rebecca Wallace has worked in a variety of jobs within healthcare most of her adult career. She worked in oncology, in the hospital and in field hospice before agreeing to become an administrator. She has run a hospice while raising a family, and remembers well the feeling of the weight of a pager hanging off your hip while carrying a huge bag of paper charts on the other shoulder to balance the weight. It was always Becky’s dream to write for hospices and help hospice staff members and volunteers feel confident and equipped to do the best job they can, with easy to use tools. She left full time hospice in 2014 to start a private practice, working with grief and trauma clients, while also writing and producing booklets for Wings of Change Publications. It is the fruition of many years of dreaming and working towards a goal, and she loves getting to connect with people who are also in love with hospice and palliative care.
Terri Schanks worked as a child abuse and neglect investigator while in graduate school, at the same time doing internships in pediatric hospice. She almost joined the Peace Corps and went to Guatemala, but instead stayed in the States and pursued a career in hospice instead (she’s sure the Guatemalan’s are happy with this choice). Terri worked in a variety of roles in hospice, but most of all loved being at the bedside in a hospice house and sitting with people during the death. When her mother was dying, Terri had the opportunity to be a family caregiver as well, and it just cemented her desire to write for hospices, to give the family the information they needed to walk them through the hospice and death experience. Eventually she left to start a private practice and did some other writing as well, but never let go of the idea of writing hospice and grief books. Wings of Change Publications is the mixing of all of these desires and dreams, and she loves it.
Terri is also our staff aroma therapist, having worked with alternative health services for nearly 30 years. We also carry a number of essential oil blends for the hospice patient and family who also want to use some complimentary services, along with the usual hospice or palliative care services. Nurses, social workers and other staff members are really enjoying using the oils for personal and staff use as well.
We have both been there on crazy days and long nights, extended bereavement visits and through all the changes in hospice and healthcare. We’ve worked in rural and urban settings, in the field and in a hospice house. Like you, we had pagers and made calls from pay phones, kept a way-too-heavy bag of paper charts in our trunks, and went out in weather that most sane people would never even attempt. We did it because we loved it, and loved the people we worked with, and loved the variety of people we got to meet, from all walks of life. We still love hospice, but hoped to reach more people through our writing than we ever could one on one.
All along, we wondered if there was a way to make some of this easier for everyone, staff as well as patients and families. Writing these publications for hospices, trying to streamline the process and make it beautiful at the same time is our solution to the gaps we saw in the hospice industry, and it is our heartfelt passion. It’s always our honor to be with you at the bedside, and we remain humbled and honored to do this sacred work with you.
When I searched you, I found that you have another whole side to your business. What’s that all about, and who are Huckleberry and Paisley?
It’s true, we moonlight as retreat leaders, aroma therapists, and as trauma and grief specialists; we just can’t seem to get away from all this fun stuff. We both still have a private practice and work with clients directly, while we write about it here. We offer aromatherapy consults for other professionals and can make you a blend of essential oils and other complimentary resources for palliative care, and we are happy to answer any questions you may have about that as well. You can check out our other services here if you are interested.
We are still trying to decide if Huckleberry and Paisley are support staff or staff support, but they work on our security team, chasing off marauding birds and alerting us to apparently vicious retired people walking dogs. If they had 2 legs instead of 4, they would probably be hospice social workers, based on their ability to read body language and seemingly know all things without being told. They are patient and kind, like to eat junk food and are always up for a road trip or a coffee run if some whipped cream is involved. Huckleberry is a therapy dog we use in the office with clients, and hangs out to make sure we get a lot of writing done in between treats! When we have had private therapy clients who entered into hospice, Huckleberry has made home visits, and is a natural at providing emotional and spiritual support.
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