Because end-of-life doula care is a fairly new modern framing (such services have been provided throughout human history), I’d like to break down the individual pieces of what this actually consists. The first blog entry was a bit long in framing the “why,” so let’s circle back and touch upon the “what.” In the upcoming blogs, we can talk about how flow actually matters and relates. (Now, granted, I also have an intro chapter discussing all the pieces of Halcyon, Halcyon Crossing, flow states, and my ongoing work with grieving/attachment/dying, but that doesn’t transfer well into blog form. :-p) With an ethos of compassion and connectivity, the services provided by Halcyon Crossing are intended to allow the transitioning states of the end-of-life to chapter be as comfortable as possible. Resources and compassion are at the forefront for all individuals, thus allowing grace and dignity in navigating the final chapters of life. Effectively, Halcyon Crossing serves as a “triage point” for individuals to reach community resources during this challenging time, while celebrating life and encouraging a copacetic end. In order to ensure smooth transition and understanding, the program is framed in four stages: 1.) planning; 2.) engagement; 3.) vigil; and 4.) memorial & reprocessing. Phase One: Planning Location: farm, home, or hospice Goal: organization, clarity, completeness, understanding Planning begins with the in-take process, including contracts, forms and recording of participant status (e.g., diagnoses, chronic illness, family members), interest in engagement at the farm (e.g., bird watching, horsemanship, celebration of life service, memorial service), and an overall preparation file (e.g., intent of home or hospice care, legal matters and directives, wills and bequests). Financial and legal referrals will be available as needed for personal appointments, helping to ensure that all legal documents are in place, that all concerns are addressed or networked into a resource within the community, and providing the best preparation for the end. Phase Two: Engagement Location: farm, home, hospice Goal: decompression, connection, creativity, flow states, creativity, memory book/keepsakes The second phase revolves around educational services and comfort for the individual and family members, such that the discussion of dying, grieving, and healing can be understood. During this time, the stages of dying and grieving will be addressed and discussed, primarily focused around the process of change, such that families and participants can have an understanding of what may be ahead. With the compassionate EOL doula, members of the healthcare team, or referrals to other services in the community, there can be discussion of how dying may physiologically and psychologically occur, the stages of experience, and how family may begin to heal with finding meaning and purpose after loss. With education in place and an ongoing inclusive feel, participants will have access to the farm as they desire. The natural environment allows individuals, families, and children to design and create keepsakes and memory projects, record video and audio interviews, have horsemanship and animal experiences, attend bird watching and nature strolls, plant sections of the memorial gardens, and enjoy restorative yoga and meditation. This will allow individuals to find comfort in a copacetic realm, as well as a way to find their own meaning, rather than being restricted to the medical, sterile realm of a hospice or nursing home. If the farm is not of interest of or simply not possible due to decline, accommodations will be made as much as feasible to allow for an individual’s wishes at her location. Phase Three: Vigil Location: Home or Hospice Goal: Peaceful passing in a tailored, personalized atmosphere As an individual begins to decline in the final days, they will be made comfortable in the setting of their choice. Home care or hospice check-in, dependent on an individual’s wishes, will allow the person the comfort he seeks. The end-of-life doula will continue to be an advocate for the individual during this time, will prepare the bedside and room to the guidelines in the preplanned vigil, and will stay present as desired. This may include playing a selection of choice music or sounds (e.g., nature, rainfall, ocean), lighting a candle with a select scent (e.g., lavender, sandalwood, vanilla), placing a particular color tapestry over the light, and generally allowing the environment to be as personalized as possible. Similarly, the individual may desire poems, books, or spiritual passages to be read during this time, or particular animals or people present. The memorial books and keepsakes created at the farm visits can be reviewed and enjoyed during this time, allowing all visitors to embrace the moment and journey. The doula will continue to offer respite and rest for the family caregivers, such that sleeping breaks may occur and other engagements may be handled. By staying at the individual’s bedside, the family can be ensured of contact in the final hours, as well as provide that the individual will not die alone. Upon passing, the doula will guide the family in performing bedside rituals that the individual requested (e.g., washing of the body, poem reading, candle lighting). If desired, the doula can aid in arranging for transport to funeral home, or handle matters such that the family may be allowed to grieve and focus on finding center. The doula can stay present as much as the family desires through the funeral and memorial services, or simply end direct involvement at this time. Phase Four: Memorial & Reprocessing Location: Farm, home, or other location Goal: Reflection, celebrating life, remembering After the funeral can be a challenging time, but will be eased due to the families having received preparation, information, and education from the doula. The organization, details, and support during the immediate time following death are pivotal elements as to how family navigates the immediate, sudden shock of loss, even with an extended hospice time (Mitima-Verloop et al, 2019). Memorial services and celebrations of life can occur at the farm, as well as “Irish wakes” of evening bonfires among family and friends, allowing the reflection, commemoration, and peace to be found in the Halcyon Crossing space. Family members may retain access to the services and space for the years to come, with hope that they may participate as a volunteer to welcome and guide others through the end-of-life processes with the same ethos and compassion. This is a time to reflect, to celebrate one’s life, to work through the processing of the journey, and to understand how life can best be experienced with the copacetic adventur References
Mitima-Verloop, H. B., Mooren, T. M., & Boelen, P.A. (2019). Facilitating grief: An exploration of the function of funerals and rituals in relation to grief reactions. Death studies. doi: 10.1080/07481187.2019.1686090
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Spoiler alert: we all die. In life as a whole, preparation can help ease the impact of extreme events; lack of preparation can make experiences harder. This blog is about such preparation, appreciation, and letting difficult topics find a gentle flavor (and it’s copyrighted to within an inch of its life, no pun :-p). We’re going to talk about end-of-life care and how doulas fit within the current medical model, about dying, about grieving, about the who and why and how and where and when. These topics are not necessarily enjoyable, but they are necessary to ensure a “good death” with dignity, compassion, meaning, and purpose. Some posts will be informative, some fun, some research-based; each is meaningful and sincere. This is a return to authenticity. With Halcyon Healing Center quickly expanding and opportunities multiplying, I have found myself uniquely positioned with the elements of this domain. For those who do not know me, I have a nonprofit just north of Ft.Bragg for (primarily SOF) service members, veterans, spouses, and children, which offers horsemanship, decompression, creativity immersion, and a return to truly feeling human. Even with that participant focus, human is human; I refuse to turn away anyone. My insights and assessment of the trauma realm are quite different than some (understatement), and my beliefs, inquisitiveness, and self-deprecating humor have taken me down a beautiful rabbit hole of life experiences. In a nutshell, I’m simply passionate about allowing others to find a copacetic state of being. Essentially, I’m willing to navigate any necessary terrain to ease others’ journeys. If you would like credentials, my full bio and all that jazz are on the separate nonprofit site – Halcyon Healing Center. To be clear, my end-of-life doula services with Halcyon Crossing are not directly affiliated with the nonprofit. Halcyon Healing Center nonprofit endeavors are based at my farm, and separately, my end-of-life ("EOL") personal services through Halcyon Crossing are organized in a different capacity at the farm. Similar approaches to being human and offering understanding, but different programs. (I often live here; I’m immersed in this world. :-p) With all this in mind, Halcyon Crossing provides positive support and early preparation for the final chapter of life by guiding the transition to be navigated in the gentlest, kindest way. This is about helping to provide a “good death” with dignity and compassion, rather than a lonely, fearful end. I happily work with all ages, but kids, adolescents, and young adults with terminal illnesses are my niche. This blog post may be a bit more research-focused than many will enjoy, but I am setting the stage for future posts. So, let's begin. Status Quo Even with the growing specialty of palliative care, the current efforts to provide EOL care are subpar, often late, and frequently not enough to positively affect dying individuals and their families (Mackenzie & Lasota, 2020). As reported by these authors, a study by the American Society for Clinical Oncology found that 70% of relation caregivers wished they had more information regarding end-of-life care and options for their loved ones. 70%. This means the 30% of caregivers felt they had enough information and education. Less than one third. Does this sound like a satisfactory number? With multiple relay points of providing and receiving information between doctor, family, and dying adult or child, there are many routes where misunderstanding and lack of communication can occur. On average, doctors understood that there was no chance for a cure over 100 days (over three months!) earlier than the parents having the same understanding (MacKenzie & Lasota, 2020). Similarly, these authors report that in 58% of pediatric cases, Do Not Resuscitate orders were first discussed with the dying child on on the last day of life. With less awareness, there is less time to understand, adapt, say goodbye, or create a legacy project for remembrance. Even more so, greater levels of distrust and fear are fostered (MacKenzie & Lasota, 2020; Bates & Kearney, 2015; Katz, 2020). To go a step further, extensive loss may occur even before final death itself: loss of control, of identity and role, of body integrity, of future, of relationships, and of trust (Katz, 2020). Frequently, related isolation, abandonment, and such loss are worse fears than death, but each can be countered by a sense of community and understanding (Bates & Kearney, 2015; Katz, 2020). Phrased differently, it is imperative to find safety, understanding, and positive ways to escape intensity, if even for a little while. Proactive engagement is the time for communication about transitioning away from life and into passing (Katz, 2020). However, one must note that EOL experiences and communication are longitudinal, yet rarely perfectly linear; a spiral, if you will. Qualities of information exchange will ebb-and-flow and shift over time, based on new developments in each individual case (Bates & Kearney, 2015). Mackenzie and Lasota (2020) explain that by incorporating a proactive approach to discussions along this track, by sharing information and education *before* crises and diagnoses, individuals can prepare and plan during non-threatening times. What if a positive, beneficial rapport could easily be formed with a patient and family long before the final weeks, days, and hours? Communication leads to rapport; rapport, to community Indeed, researchers have found that the higher the quality of communications, the greater the trust and peace of mind that will be found between patient, family, and healthcare providers. When pediatric patients are included in discussions, there are fewer feelings of isolation, and increased levels of adaptation (Snaman et al, 2020). Likewise, these researchers discuss that continued connection with friends and community is essential to the well-being of children, siblings, and parents. Finding a sense of normalcy to any extent possible is a vital goal. As discussed by Katz (2020), perceived support from communities, friends, and others can be protective factors against negative psychosocial outcomes for patient, family, and friends. Katz explains that the level of stress that a patient and family can handle relates to the degree of a close relationship with someone who understands the family’s styles of coping, grieving, and level of emotion tolerance. In this vein, kids may elect to not hear about their condition, but not offering that choice can lead to a missed chance for a warm, connected, supportive end (Bates & Kearney, 2015). In short, it is vital to have someone who simply understands the nuances of the family’s dynamic. So Why EOL Doulas? In a nutshell, “death doulas” identify and address gaps in the end-of-life processes, thus alleviating the strain on healthcare professionals and often-exhausted families. The majority of terminal individuals spend the last year at home or in hospice care, which increases reliance on community support, family, and friends (Rawlings et al, 2019). These authors explain that EOL doulas can take on responsibilities and tasks for which the healthcare team may not have time. This includes explaining all options and choices, listening to memories, guiding creation of legacy projects, holding vigil, allowing family caregiver rest, and staying at the bedside as much as needed. Thus, the EOL doulas strive to provide comfort and quality of life according to the dying individual’s wishes. The final chapter is a time for listening and making meaning of death, helping the dying person process the losses, and for a compassionate soul to allow enhanced understanding for the family and friends (Huffman & Stern, 2003). For example, this may include relaying the stages of the Kubler-Ross model of grief, such that the patient and family can comprehend what may be ahead. This effectively normalizes the experience, allowing the process to be framed with knowledge, rather than underlined by fear of the unknown. When one understands how the last chapter may feel, and how subsequent grieving may be encountered by the family, comfort and acceptance can be better discovered (Huffman & Stern, 2003). Dovetailing communication, comfort, and community As discussed by Michelson and Steinhorn (2007), family activities and long-held goals may help improve quality of life, especially for children (e.g., short trips together, shared experiences, attending a graduation). Kids want to live, want to meet others without terminal illness, and want to keep a sense of identity as much as possible (Bates & Kearney, 2015). With adults, connectedness to family and community may matter, as even (or especially!) caregivers need a place to decompress. This also includes the medical professionals, who have also earned a compassionate community to talk, vent, and feel understood (Michelson & Steinhorn, 2007). Enter: the services of Halcyon Crossing. Along with information provided by these services, the quiet, peaceful farm environment where HC and Halcyon Healing Center are based presents a community of like-minded souls of all ages. By engaging as possible with horsemanship and farm activities, creating keepsakes and crafts reflecting one’s life, enjoying group bonfires, and immersing with welcoming, accepting souls who *simply get it*, each individual can decompress and breathe. If even for one day, this is an escape, a refuge, and respite away from the stressful, sterile, medical atmosphere. Because of the experiences provided in Halcyon Crossing, when the final stages of active dying and holding vigil are entered, one can experience the most peaceful, supported passing at home or in hospice. Holding vigil at home or in hospice is always encouraged and custom-designed, tailoring the experience to each individual’s unique personality and desires, and allowing a last feeling of control. This is a return to feeling human, to being authentic, to experiencing beautiful rapport. At the end of the day, we’re in this together. Upcoming piece… How “Flow States” Enter the Equation for Quality of Life References
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AuthorAndrea is a random MA-turned-NC transplant who combines dark-horse authenticity, self-deprecating dark humor, and a passion for the circle of life. As a "professional holder of space," she is an end-of-life doula trained by INELDA, secular chaplain/celebrant, lifelong equestrian, doctoral student, independent writer/researcher, and most fun of all, student in a funeral director program. Life's about living; make all the memories you can. ArchivesCategories |