The Looming Elder Care Crisis
I don’t want to be alarming, but there is an elder care and end of life care crisis looming in the United States and all around the world. You may have heard something about the declining global birth rate and how it may impact the future of civilization. Everyone from Elon Musk to the United Nations has voiced concerns over the long-term impact of falling fertility rates. Their main concern? How an overwhelming aging population and a much lower percentage of young people will cause intense strain on the labor market and economy of the future. What no one is mentioning, however, is how all of those elders in the world will be requiring care to some degree and all of them will be experiencing their end of life some day in the future. Not only do we have a surging aging demographic, but people are living longer on average as well… and not necessarily more independently. Who is going to shoulder that responsibility when less and less people are having children? This is a serious component of this issue and not enough is being done to adequately prepare for it.
Here are a few facts and statistics that may surprise you if you aren’t aware of this problem yet. 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 (the standard threshold for being considered a senior citizen). This means that seven years from now, approximately 23% of the entire U.S. population will be officially retirement age. In 2034, adults aged 65 and older will outnumber children aged 18 and younger for the first time in history – and it’s not just a problem in America. This trend is occurring in practically every developed nation on earth. This trend is expected to continue until at least the year 2060, when those 65 and up are expected to outnumber children 94.7 million to 80.1 million according to the U.S. Census Bureau. Who is going to care for that staggering number of people? How do we ensure quality of life and a dignified death for each of them?
Hospitals? Our health care system was completely overwhelmed during the COVID-19 pandemic, and it highlighted how fractured the system truly is. It showed us how susceptible we are to having a massive breakdown in that infrastructure when more people need care than there are those available to provide it. The only difference between these two scenarios is that this crisis is coming gradually. The wave of people needing care is building up and when it falls it will overwhelm the existing system. Not only that, but following the pandemic, many medical professionals quit their healthcare jobs and chose to pursue a new path in life. Kids who want to become doctors and nurses are reconsidering. After seeing the way medical professionals were mistreated and under equipped when we needed them most, can you blame them? We’re simultaneously heading towards a scenario when many more people will be requiring care from trained professionals and there may be less people qualified to care for them than we have today! The good news is that medical institutions aren’t the appropriate place for people to be cared for at the end of life anyway – they are designed to focus on preventing diseases and providing curative treatment. This is not a viable, sustainable, or affordable way to provide end of life care even if it were logistically possible. In fact, the vast majority of people say they would prefer to die at home. That’s the direction the health care system will have to move, too, in order to avoid unnecessary and expensive treatment at the end of life.
What about Hospice? Hospice is a healthcare option for people of all ages who have a medical prognosis of 6 months or less to live due to a terminal illness, such as late-stage cancer. Hospice is by far the best currently available option to provide care for those at the end of life. Hospices are still going to be too short-staffed to meet the future demand for their services, but the model of care they employ is in line with what people want and what is needed in order to make it happen. The number of people seeking hospice services continues to rise, but many people delay enrollment until their final days. For this reason, hospice is sorely underutilized. We have to do a better job of educating people on their choices so that they can access this care sooner before they are in a dire situation and actively dying. Physicians must also start having difficult end-of-life conversations with their patients sooner instead of feeling like they are giving up on them by acknowledging reality. Too many people are enduring invasive and painful treatments and procedures when the likelihood of success is extremely low. This time can be spent developing relationships with caregivers, creating a care plan, and tying up loose ends – all of which contribute to a better end of life scenario for all involved.
Hospice care is an excellent option, but it is not the sole answer to the end-of-life care crisis that is coming. It must be supplemented to work as efficiently as possible. Most people are surprised to find out that they are responsible for the bulk of the hands-on and physically intensive care. This leads to family caregivers feeling more like tired nurses than devoted spouses, children, and loved ones. People who have no background in caring for a dying person are not prepared for the amount of effort and information required to facilitate a good death at home. Hospice agencies function primarily in an advisory role from a distance, not as a direct care provider. They supply medications to manage symptoms and medical equipment necessary for patient comfort, but they are not in the home for much time at all. Although Medicare lists home health aides in their covered hospice benefits, in-person help is often limited to a few baths a week. On average, a nurse or aide is only in a hospice patient’s home approximately 30 minutes per day according to data provided by Medicare. Death is 24/7 and this is far from sufficient to truly help support a patient and their family navigate the end-of-life process. Some of the situations and circumstances that family caregivers are not educated to deal with can be extremely frightening and lead to high-stress environments and subpar end of life experiences. These situations often result in not only unnecessary suffering for patients, but also lifelong trauma and complicated grief for their caregivers. Therefore, although hospice provides a foundation for the solution to this crisis, it must be supported by trained and knowledgeable professionals who understand their role in guiding families through the dying process and their working relationship with the hospice care team.
This is where Doulagivers come into the equation. Doulagivers are the new specialized area of non-medical health care – specifically end of life and eldercare. They are non-medical professionals trained to care for people holistically (physically, mentally, emotionally, and spiritually) at the end of life. Not only do Doulagivers step in with specific knowledge and expertise with guiding patients and families through the dying process, but they also serve as a direct adjunct to hospice by being the “eyes and ears” of the hospice care team. Doulagivers are educated on the synergistic relationship they share with hospice to achieve the best outcomes possible for patients and their families. They have a deep understanding of how hospice works and where they “fill the gaps” in care to take the weight off of family caregivers and properly utilize hospice services and resources. These professionals are not only extremely knowledgeable on the dying process, the top end of life disease processes, the most common medications used in end-of-life care, and how to provide optimal support during each phase of end of life – they also know what questions to ask and when to contact hospice based on acute changes in a patient’s condition. They provide a calming presence in the midst of stressful moments when other caregivers may be struggling to keep it together and approach things with clear-headedness. They are another supportive presence that can reinforce training and provide information and insights to families when they need it most. The impact a Doulagiver can have on an end-of-life journey is invaluable.
The way the hospice model is structured heavily relies on family caregivers to provide the backbone of the system in order for it to operate in its intended form. Not only is this model not working well as it is – because these family caregivers are undertrained and being thrust into an extremely difficult situation when they should be spending time making memories with their dying loved ones – but it is not even going to be an option for many people entering the final stage of their lives soon. The population in America and around the world is aging dramatically and people are having less children. If the best available service for end-of-life care relies on the presence of an additional caregiver, the Doulagiver is the missing puzzle piece to help that service function well. They provide supplemental support to fill the gap in care that allows the hospice model to work efficiently. Doulagivers are an intricate and integral part of reshaping end of life care for the future and together with hospice, can make a good death at home a reality for everyone. These non-medical practitioners will be instrumental additions to the existing end of life care model in order to meet the rapidly increasing level of demand that will be experienced over the next three and a half decades. We need more certified Doulagivers to meet this need as we reimagine a new framework to support our aging population in their final stage of life.
I believe that we are completely overlooking the biggest challenge that falling fertility rates will create for society. When it comes to the economy and labor market, we have technology on our side. The introduction of AI and automation into the workforce will dramatically ease any negative effects of the lack of younger people to fill jobs. Technology improves exponentially year over year. So, while there are solutions and available pathways for dealing with that particular issue, there remains no plan in place for dealing with the care that will be required by all of the currently living people as they age. We need to stop focusing purely on the economics and start focusing on the human needs that this crisis entails. Even the medical system will gain a lot of reprieves from technological advancements. Computerized equipment and futuristic medical innovations will allow each doctor and nurse to serve more patients, thus lessening the problems caused by the ballooning patient-to-provider ratio they face. The unfortunate part of that reality is that medical care will lose its human touch as a natural byproduct of these changes. We already see this taking place today. People receive life shattering medical news and diagnoses via livestreams on an iPad rather than a face-to-face meeting with their doctor now. More and more people are being left alone in hospital rooms attached to machines and other medical apparatuses and only have human contact during scheduled rounds. With the number of medical professionals dwindling and the number of people needing care skyrocketing, the future of healthcare will only become more and more impersonal over time to meet supply and demand issues. We have to make sure that trend doesn’t spill over into end-of-life care as well.
End of life care isn’t about curing death – it’s about providing the highest quality of daily life for a patient and their family. It’s about guiding people through that natural phase of life with kindness and compassion. It is about helping them plan for the inevitable so that it can go as well as possible in a way that upholds their wishes and maintains their dignity. You cannot automate proper end of life care – it is one of the few things we can say that for. A human being holding space in compassionate presence for another in their last days of life cannot be replaced by machines. The end-of-life process cannot be expedited or rushed. If we do not get intentional about working to ensure that this human element of care remains available into the future, it will disappear. We cannot allow that to happen. Being left to die alone in an institution of some kind isn’t what I would want for myself and it’s not what I would want for anyone else – especially those I love. The time to start taking action so that every person has the ability to experience a dignified death is now.
Doulagivers are going to play an immensely important role in maintaining compassionate end of life care for all into the future. We need more palliative care, not less – we have to come up with innovative solutions that improve and expand care access to fix what’s broken now and to handle the elder and end of life care crisis that’s staring us in the face. If you feel called to work in this space and to help those at the end of life and their loved ones through this transition, the world desperately needs you to step up and follow that calling. This is a new, innovative movement that can help lessen so much suffering and create beautiful outcomes for people – but only if we have the empathetic, caring, and heart-centered individuals come forward to fill this important role. Even if you don’t feel like you can work as a professional Doulagiver, we all have a role to play in helping to ease the impact of this coming crisis. By learning the skills for how to care for someone who is dying, we can all have the essential information and skills to assist those at the end of life. There is truly never too much support during this time for patients and families and if we bring these skills back and normalize them for everyone, the impact it will have will be truly incredible.
For this purpose, Doulagivers offers a free educational webinar each month that covers the Doulagivers 3 Phases of End-of-Life Care Model, how to interact with patients and families at the end of life and seeks to demystify the dying process. You will also learn invaluable insights about LIFE from those preparing to leave this world so that you can feel empowered and inspired to start living more authentically to yourself and in alignment with your purpose. This training is part of the Doulagivers global outreach initiative to teach everyone in the world the basic skills of how to care for someone who is dying. This is a skill that is all but lost in our modern-day society and it is causing death to be a thousand times harder than it needs to be for both patients and their loved ones. Death is something that we all have in common no matter our race, religion, or socioeconomic status. We believe that this education to support people to have the most positive end of life experience is a human right, not a privilege. Infused with real bedside stories, this free training empowers people with the skills to care for their loved ones at the end of life, helps heal grief from past experiences with death, and reduces the fear of death in general. It also aims to provide insightful and priceless wisdom from those ready to leave this world about how to truly live fully and make the most out of life’s journey!
Find more information and sign-up for the next available training at https://www.doulagivers.com/monthly-free-class-register/
The FREE Doulagivers 90-Minute Level 1 End of Life Doula Live Webinar Training is hosted monthly by Suzanne B. O’Brien RN, the Founder and CEO of the International Doulagivers Institute.
The International Doulagivers Institute also offers other free trainings and resources ranging from Advanced Care Planning, Forgiveness, Grief and Bereavement, Conscious Awareness, and more!