definitions
PALLIATIVE CARE
Palliative Care is specialized medical care for people who are living a life with a limiting illness. It includes treatments that intend to cure the disease with incorporated comfort measures.
hospice care
Hospice Care begins after treatment of the disease stops, and it is clear that the disease cannot be cured. The focus of care moves from a curative model to one of comfort care.
MEDICAL DOULA PROFESSIONAL
A Medical Doula Professional is a trained professional who provides a dying individual the access and means to transcend fears, inspire peace, compassion, and love. Essentially, they are experts in planning individualized care. They support the patient, as well as the patient’s family and friends. Additionally, they support with supplemental needs and resources that are non-medical.
MEDICAL DOULA PROFESSIONALS IN ALL STAGES OF DEATH
Medical Doula Professionals offer a variety of services and specialties depending on their training, but they also rely on several criteria, such as who they are serving the dying person and/or their loved ones, and what stage they currently are in the dying process.
Usually death can be divided into three different stages, and again the care needs for the person or families are different based upon each of the stages which are as follows:
Pre-Death, Actively Dying, and Post-Death.
STAGES OF DEATH
pre-death
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When an End-of-Life Doula (EOLD), or Spirit Midwife mentions the term "pre-death planning," people automatically assume the role being referred to is advanced directives, end-of-life documents, or funeral planning. Although a Death Doula can help with those they also have many other roles.
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Roles of an End-of-Life Doula in the Pre-Death Stage include:
A calm or nonjudgmental mediator, with a segue into difficult conversations that still need to be addressed with a person who is dying before they move on to the active phase.
Act as an educator, teaching at Universities, Libraries, Schools, Senior Centers, Assisted Living Facilities, and health fairs.
Attendees at Death Cafés where they can function in the role, not only of a coordinator with advances in what Death Doulas can offer, but also in simplifying paperwork that may seem overwhelming to the person or the family.
They bridge a gap, communicating with the hospice care team, regarding any needs of the person dying and their loved ones not which have not been addressed.
They offer an abundance of resources, offering assistance to families and the dying with volunteers, design templates to help monitor needs on a daily basis.
A confidant for the dying, for anything they are afraid to discuss with family. A sort- of "Spirit Best Friend".
A companion at hospital visits.
Someone to plan for and arrange for what the person wants/needs during the active phase of dying.
Help compose and/or write Eulogies and Obituaries
Providing a calm, peaceful surrounding and plans for pre-death needs.
ACTIVELY DYING
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As the end of life nears, a person will need increased rest, may require a little or no food and limited amounts of water or favorite drinks. Families often want to do something to help the person and also to keep them occupied. Much of our society and culture is surrounded by food; therefore, a person not wanting either food or water is often disheartening for families. They do not want their loved one to die of starvation or dehydration. An End-of-Life Doula is instrumental in explaining this transition: the releasing of the prior needs while assessing and addressing those in the present. Some other examples of where they can also help are listed below.
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Roles of an End-of Life Doula in the Actively Dying Stage include:
Define and address needs of the dying along with the needs of family and friends.
Control pain and anxiety.
Communicate and put into action exactly what the person expressed during the pre-death phase.
Share letters, memoirs, recipes, journals, photo albums and other mementos the dying may have asked to give to family and friends prior to the active dying phase.
Alleviate concerns regarding obituaries or eulogies that the Doula can write with or for the family.
Provide a calm and compassionate environment.
Define, teach, and implement non- medical sources of comfort.
Explain the symptoms: what is normal when actively dying; when interventions are needed and appropriate.
Support and be a companion to the family.
Provide a sitting vigil allowing the family to rest. A sitting vigil is a sacred event led by a doula for the dying, based on religious or spiritual beliefs. It is customized to the individual's needs.
Guide and help loved ones to say good-bye
Provide solace, relaxation techniques such as aromatherapy, Reiki, massage, and others.
Provide guided meditations and rituals specific to a person's religious faith or spirituality.
POST-DEATH
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Post-Death activities are individualized. It is important to discuss expectations prior to the death. These topics include, cultural or religious needs, cleansing the body, attire before or after transportation to the funeral home, as well as if the decision is made for a traditional funeral or alternatives. Whenever possible, the more planning in advance, the better. We are often caught unaware and find ourselves facing an onslaught of decisions to be addressed during an already stressful or difficult time. Having a Death Doula in place beforehand supplies support to the loved ones left behind, a calming presence, and the ability to alleviate stress as well as educate the family or friends what their options are.
Immediately following the death, family or friends may feel what is commonly referred to as "Grief Relief.” This is especially true for those who have cared for a terminally loved one for weeks, months, or years whether at home or in a facility. Guilt often supersedes logic. Working through these emotions is tantamount to healing. It is important to remember the loved one who has transitioned from life to death wants to know the ones they left behind are being cared for. Complex grief is the difficulty one has in resolving the loss of a loved one, as expected. It can persist for several months or years and require a professional counselor.
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Roles of an End-of-Life Doula in the Post-Death Stage include:
Coordination and communication with funeral homes, crematoriums, etc. for services requested.
Care of the body based on State or County laws.
Post-Death family support
Assistance with Post-Death paperwork.
Pack up and remove personal items for keepsake or donation.
Distribution according to the decreased’s will/wishes.
Bereavement, Spiritual, and Grief support.
What I Bring to the Passing of Your Loved One
honoring wishes OF YOUR LOVED ONE
One of the most important and essential tasks of an EOLD is honoring wishes of your loved one. Additionally, it is extremely important to address not only the legal and medical aspects of dying, but also to know, understand and help arrange for the wishes of the dying person. What do they request and require to have a peaceful passing? Whom would they like at their bedside? Do they want music? What kind? Do they have wishes to travel if possible? Visit a favorite beach? What would allow them to feel most at ease/peace?
HOSPITAL CARE ISN’T CUTTING IT: frustration with current medical care
Increasingly hospitals and the medical teams advise treatments in an attempt to “cure” and/or extend the life of their loved ones. The concept of dying at home peacefully and comfortably surrounded by companions frequently has been replaced by painful and frantic patient races to emergency rooms, bright lights and painful tests and uncomfortable beds. Patients are admitted to hospitals with little or no chances of survival and often die alone. Many physicians are uncomfortable when they have run out of options to “save” or “cure” patients. Therefore, they miss the opportunity of explaining the probability of outcomes following painful and often permanent procedures. They rarely mention a Doulas' ability to provide a soothing, peaceful death by providing non-medical care. Our culture has long ignored the inevitability of death as a part of life, and physicians sometimes consider death as a failure. Frequently, physicians do not receive education on the dying process, nor quality of life versus length much less the availability of an EOLD.
Given the failure of hospitals to guide patients and loved ones through dying, more families are enlisting the services of EOLDs. A key element of the Doula’s role is to provide information and resources to help clients better understand about the dying process might look like/progress.
PRACTICAL PREPARATION
When people approach death, they have multiple concerns about their family: how they will navigate after their passing, who will care for their pets, and overall, what is needed to make things easier for those left behind? This is an important integration of the dying process by hiring a Doula who can alleviate much of the fear and anxiety with practical and effective preparations.
Doulas are experts when it comes to assisting with physician orders for life-sustaining treatment and/or advanced directives. But they do so much more. They are able to answer questions and help the patient and family engage in uncomfortable but often necessary conversations.