10 Reasons Why Death Doulas are the Future of End of Life Care | Doulagivers Institute
Jun 26, 2023
What if I told you the greatest determining factor in whether or not an end of life journey is considered positive is the level of support experienced throughout the process?
Would you agree that there is always room for more support in that scenario or settle for the bare minimum?
When considering your own end of life or that of a loved one, would you want as much support as possible or would you rather face it alone?
Given the fact that most of us would like to stay at home during the end of life and have a positive experience, answering these questions is seemingly a no-brainer.
Unfortunately, many people are underprepared and uneducated about how the current end of life care system in this country works. Patients and families often assume that if they enroll in hospice care that they will receive all the support necessary to have a positive end of life journey, but that is far from the truth.
Medicare data has revealed that a hospice nurse or aide is only in the home approximately 30 minutes per day on average during in-home hospice care. This equates to 2% of the day, which means patients and families are navigating the end of life on their own the other 98% of the time in most cases.
The end of life is 24/7 and this system is not providing sufficient support to create positive outcomes for the end of life. We can, and we must, do better.
The urgent need to reshape and enhance end of life care is only compounded by the Eldercare Crisis we are facing as a nation. There are currently 76.4 million Baby Boomers (those born between 1946 and 1964) living in the United States. By 2030, every single one of those people will be 65 years of age or older (approximately 20% of the entire U.S. population). In 2034, adults aged 65 and older will outnumber children aged 18 and younger for the first time in our nation’s history.
According to the U.S. Census Bureau, the number of people aged 65 and over is projected to rise from 52 million in 2018 to 98 million by 2060. All of these individuals will require end-of-life care, but how do we ensure quality of life and a dignified death for each of them?
There are several main factors contributing to the massive gap in care that currently exists for end of life patients. Hospices are facing staffing and nursing shortages as demand for their services is increasing significantly year over year. At the same time, the vast majority of hospice agencies are for-profit entities and because they have an obligation to generate return for investors, they tax their nurses with higher caseloads in order to increase profit margins.
It is not uncommon for a single hospice nurse to be managing 15 to 18 patients at one time. We cannot stress enough that the issues and shortfalls facing the end of life care industry are NOT the fault of those who dedicate their professional lives to hospice work. Hospice nurses pour their heart and souls into providing the best care they can to patients under the circumstances they must contend with.
It’s important to remember that hospice workers are struggling too – for the people on the frontlines trying to see as many patients as possible and provide the highest quality of care, understaffing is the biggest obstacle they face. The already ballooning demand for hospice services year over year is putting pressure on existing staff in hospice agencies and the lack of care that results from this is then shouldered by untrained family members.
It is the system that is broken and mismanaged. There is a huge gap in care that exists in the industry that is harming end of life patients and their families. If we don’t start speaking about it honestly, we are allowing people to continue falling through the cracks at the most vulnerable time in their lives. This needs to be said until there is meaningful change.
The fact is that because most hospices are for-profit entities now, there is a conflict of interest that exists between focusing on the quality of care that patients and families receive and maximizing the bottom line. Because Medicare reimburses hospice on a flat rate per diem basis, they are actually incentivized to visit the patient’s home less to reduce overhead costs. This hospice model works primarily by outsourcing most of the caregiving work to the family members of the dying person.
Most people are completely blindsided first by the terminal diagnosis of their loved one, then second by the reality that they are going to be performing most of the care for this person themselves. As you can imagine, being suddenly asked to care for someone at the end of life when you aren’t adequately trained to do so or have no prior experience providing this type of care can result in heartbreaking outcomes for all involved. This creates a huge need for more in-person support at the end of life, as well as better ways to train and educate family caregivers.
What is desperately needed right now is the addition of non-medical practitioners who can have a functional impact within the home and who understand what matters most to the patient. People who can develop a plan around the wishes and values of the dying person, advocate on behalf of the patient, attend to and manage their symptoms, conduct life reviews, and help to resolve unresolved issues. Having this supportive presence working collaboratively with both the patients, family caregivers, and the hospice care team is what’s best for the patient’s journey and overall experience.
This is where hiring a Doulagiver is a huge asset. Doulagivers are non-medical professionals trained to provide emotional, physical, spiritual, and informational support to a patient and family before, during, and after death. Doulagivers are not the same thing as Death Doulas or End of Life Doulas, as the Doulagivers Practitioner training is in a category of its own. Professional Doulagivers have been trained as non-medical holistic end of life care practitioners with a Death Doula Training within their curriculum.
In addition to sharing information about the dying process and comfort measures, Doulagivers also act as the point person between a patient and family and the hospice care team. They facilitate communication between the patient, family, and medical care providers by helping to articulate their client’s questions, concerns, preferences, and values so that the end of life can go as well as possible. They work in conjunction with the hospice care team or other medical care professionals to provide the highest quality of care possible to achieve the most positive end of life experience for all.
The addition of a Doulagiver can make a world of difference for both patients and families and lead to the desired outcomes people have for their end of life. Namely, being kept as comfortable as possible and dying with dignity.
Doulagivers are thoroughly trained in every aspect of end of life care and offer professional expertise, as well as an additional layer of support to family caregivers facing the heavy responsibility of caring for their dying loved one. Doulagivers help in planning for the end of life, offer physical and emotional support throughout the dying process, and advocate for patients and their families by serving as the point person between a patient and their hospice care team to ensure proper use of resources and services throughout the end of life journey.
By acting as the ‘eyes and ears’ for hospice, the Doulagiver can alert the hospice nurse of any acute changes in a patient’s condition, leading to a more timely and effective response. Doulagivers are establishing the gold standard in the broader field of Death Doulas and End of Life Doulas.
There are many benefits to having a Doulagiver in the home at the end of life. The presence of a Doulagiver reduces a patient’s and/or family’s anxiety and increases the effectiveness and efficiency of hospice services. They also improve the bond between patients, family caregivers and the care team, help patients resolve unresolved issues, and communicate expert knowledge in real time.
A Doulagiver is trained in all aspects of end of life care to help create a care plan, assist throughout the dying process, and help make after death arrangements by coordinating all resources involved and guiding the family with the most cost-effective and informed decisions every step of the way.
Here are 10 Major Benefits to Having a Doulagiver Present at the End of Life:
- They Help You Create an End of Life Care Plan: Whether you’re fully healthy right now and just want to take the initiative to prepare for a day you know is coming or you’re scrambling to create a plan after a sudden terminal diagnosis – a Doulagiver is educated in helping you know your options, rights, and how to secure your wishes. They can assist with filling out paperwork, direct you to the proper professionals, and offer expert guidance throughout the decision-making process.
- They Are the “Eyes and Ears’’ for Hospice. Alerting Them at the First Sign of Change in the Patient: Knowing that on average, a hospice worker is only in the home of a dying patient no more than 30 minutes a day, Doulagivers who are trained in all three phases of end of life and have no time restrictions, can alert the hospice team at the first sign of change in a patient’s condition. This allows the hospice nurse to make a visit, assess the patient and make changes to the medical care plan ensuring optimal comfort is maintained throughout the entire end of life journey. Doulagivers are holistically trained to help you manage the intensity of death and dying and to make it as comfortable and dignified as possible. By holding the space for the dying person and the loved ones, the Doulagiver’s expertise will help the patient and family get through each phase of end of life in the best possible way.
- They Provide Emotional Support During Death: Doulagivers are known for the calming presence they bring to an end of life journey. With the compassion, support, and the expert knowledge that comes from completing the Doulagivers Training Program and gaining experience through assisting many people through death, you and your family will be able to set your mind at ease and focus on what you need to be doing. Things like making memories and cherishing time with your dying loved one and making sure you’re taking care of your own needs with proper rest and nutrition – things that are often not possible for family caregivers thrust into a position they are not adequately prepared for. Having an expert by your side provides the freedom to trust that when your Doulagiver says, “You’re doing great and everything is fine” that it truly is fine and what you’re experiencing is natural.
- They Help Create A Sacred Space: Do you want dimmed lights and/or battery operated candles? Do you have a playlist or specific artists you’d like to listen to? Your pet present? Do you want aromatherapy in the air? Whatever your environmental preferences are, you can rely on your Doulagiver to create the ideal sacred space and know how to adjust as needed throughout the dying process. They will educate you on common choices and help you think about what kind of atmosphere you want to create for yourself. It should be as peaceful, serene, and authentic to the individual as possible.
- They Help Family Caregivers Help You: This is everything. Dying can be a fear-inducing experience, not only for the person dying themself, but also for their loved ones and family caregivers – especially those who have no prior experience with the dying process. A Doulagiver does not replace the support of your family caregivers, but through expert support and encouragement, educates and empowers family caregivers to support their loved one more effectively.
- They Help Family Caregivers Take Care of Their Basic Needs: In the middle of an end of life journey, family caregivers can be so overworked and overtired that they forget important things like drinking water, eating food, and bathing. A Doulagiver will monitor not only the condition of the dying person, but also the condition of those within the home providing care. They will remind them to take care of these necessities and assist in the process by creating opportunities for family caregivers to tend to their own needs without leaving their loved one alone. Caregiver Syndrome is a silent epidemic and Doulagivers can help prevent it.
- Doulagivers Advocate for YOU: A Doulagiver serves as an advocate for both patients and families. Ideally you will have developed an End of Life Care Plan and put your wishes in writing before reaching a critical juncture in the dying process. This will help ensure that your decisions are honored and upheld as much as legally possible. The Doulagiver, having been well versed in this patient’s care plan and understanding their choices, will advocate on their behalf if needed. They can encourage thoughtful dialogue, mediate conversations between family members as well as between a patient and care provider/hospice agency, and amplify questions and concerns to make sure your needs are addressed in a timely manner. A Doulagiver also acts as a safety net for patients and families to ensure hospice services are fully rendered to make sure the patient and family have the most positive and supported end of life experience possible.
- A Doulagiver Can Run Errands on Your Behalf: A Doulagiver is someone who has been called to serve those at the end of their life and their families. They do so in whatever way is most beneficial to you. Sometimes this can simply mean retrieving items and completing tasks that feel overwhelming while actively in an end of life journey. A Doulagiver can fill this need for you, allowing you and your family to focus totally on your loved one and making the most of your remaining time together.
- Have Your Questions Answered: As a result of their extensive training and bedside experience in other end of life journeys, Doulagivers are a wealth of knowledge when it comes to navigating the end of life. They are educated in the physiology of death, the top end of life disease processes, common medications used at the end of life, and all resources available to you. Whether you have questions leading up to, during, or after death, your Doulagiver is a trusted resource you can reach out to for information and advice to help everything go as smoothly as possible.
- They Help Plan Memorials/After Death Arrangements: After your loved one has passed away, it is crucially important not to rush into the next phase of planning after death services. A family experiencing grief and loss should take their time with their loved ones, say their proper goodbyes to the deceased and honor them fully. A Doulagiver can help slow things down and remind you to focus on the present moment and handle it the way you truly want to. Once you’re ready, the Doulagiver will be able to suggest options to you through the process of planning and coordinating services you need. They will share with you the latest options in disposition (such as water cremations and green burials), life celebration choices, etc. They will inform you of the pros and cons of each option available from an emotional, environmental and financial standpoint so that you and your family can choose the best option for you.
The Doulagiver will also be able to guide you through the grief and bereavement process, helping to soothe the transition back into life after loss for family caregivers and other loved ones.
The Bottom Line:
Death is a guaranteed and inevitable part of all of our lives. It can go well, and it’s so important that we help make that a reality for everyone we can. At Doulagivers Institute, we are dedicated to supporting you and your family through the entire end of life process because we believe a positive end of life is a human right, not a privilege.
Doulagivers work hard to provide the highest standard of excellence in holistic non-medical end of life care for dying patients and their loved ones.
Doulagivers Institute was formed in 2012 by Suzanne B. O’Brien RN after she was moved to action by what she witnessed in the homes of her dying patients as a hospice nurse – both the beautiful, empowering deaths that she feels every person has a right to experience and the heartbreaking, traumatic ones that she recognized were the reality for far too many.
Improving end of life outcomes for all members of the community through education and advocacy, as well as increasing satisfaction with the home hospice care experience is the ultimate goal of Doulagivers.
By including Doulagivers, Death Doulas, and End of Life Doulas into the end of life care team, we can address each of these needs, and as such, they should be recognized as an essential part of the strategy to enhance the way that end of life care is provided in this country and around the world. Patients and families should have continuous support during an end of life journey and a trained Doulagiver is the most effective way to provide continuous end of life support.
Now is the time for all of us to recognize the issues the end of life care industry faces and promote practices and models of care that we know lead to better outcomes for patients and families. A human being deserves no less than everything we can do to make their end of life go well.
Doulagivers Institute will always serve as a voice of advocacy for end of life patients and their families and we will continue to develop and offer resources that can help make death the beautiful, natural and sacred experience it was meant to be.
Whether you need the support of a Doulagiver, want to become a Doulagiver, or need more education and resources for navigating the end of life – Doulagivers Institute covers everything you need to plan for, navigate, and achieve the best end of life experience possible.
We hope you take advantage of the free resources we have made available to you and do your research so that you understand the benefits of having a Doulagiver, Death Doula, or End of Life Doula present during the end of life journey.
The Doulagivers Institute FREE Resource Center for Family Caregivers provides valuable advice on planning ahead, providing care, healing from grief, facilitating opportunities to give and receive forgiveness and even exploring the spiritual side of end of life.
This 90-minute webinar training is the best way to learn the essential skills to care for someone who is dying based on the Doulagivers 3 Phases of End of Life Model of Care. Join the Movement, Learn the Skill, Change the World!
Do you have the calling to become a Doulagiver Death Doula and serve end of life patients and their families as a professional?
During this hour long webinar, we will help you find out if becoming a Doulagiver Practitioner is right for you!
Discover how you can become a Doulagiver without having a medical background or any prior end of life care experience. We will cover everything you need to know from the extensive training curriculum, how to price your services, and share our 3-step business blueprint to teach you how to reach your community with your new offering and be able to do it all with little to no money. If you have the calling, Suzanne and the Doulagivers Team will teach you EVERYTHING you need to know!
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