A death midwife, [1] or death doula, [2] is a person who assists in the dying process, much like a midwife or doula does with the birthing process. It is often a community based role, aiming to help families cope with death, recognizing it as a natural and important part of life. The role can supplement and go beyond hospice. These Specialist perform a large variety of services, including but not limited to creating death plans, and providing spiritual, psychological, and social support before and just after death. Their role can also include more logistical activities, helping with services, planning funerals and memorial services, and guiding mourners in their rights and responsibilities. [1]
The presence of the role of a modern death midwife has been evolving in recent years, including a controversy over the regulation process for the position and the use of the term "midwife" as opposed to doula, and bills proposed to regulate the process and provide licenses for death doulas. The terms "end-of-life doula", "end of life guide", "home funeral guide" and "celebrant" are also used. [3] The field has also seen a significant rise in training organizations, which train hospitals along with individuals. [4]
The rise of death midwives is a relatively new movement, with private certification programs following the legacy of pilot programs in clinical care. One of the first movements was started in New York in 2000, a volunteer program focused on pairing so-called "doulas" with terminally ill people. The program was funded by the Shira Ruskay Center of the Jewish Board of Family and Children's Services and NYU Medical Center, and began pairing five volunteers with patients. The program was ultimately named "Doula to Accompany and Comfort". The volunteers went through training on both clinical and spiritual aspects, including, but not limited to, the complexities of end of life health care, physical issues like incontinence and disorientation, and hope in the face of death. [5] [6]
The next major clinical implementation of the death doula methodology was at the Baylor Supportive and Palliative Care Service and Clinical Ethics Committee shortly after the establishment of the New York program. Members of this department including palliative care nurses, chaplains, and therapists worked together to create a program in consultation with the New York program. From there, a program involving a 6-week training program was formed to work hand in hand with clinical medicine, wherein doulas are referred by nurses, social workers, and therapists, and must be specifically ordered by the doctor. After being ordered, volunteer-trained doulas are matched by the hospital's reverend to individual cases. While the Doula to Accompany and Comfort program provided outpatient services as well as inpatient, the Baylor program is only for inpatients. [7]
There has been controversy over the label of "Death Midwife" in Canada. The College of Midwives of British Columbia has called for death midwives to stop using the label of midwife, specifically with the Canadian Integrative Network for Death Education and Alternatives (CINDEA). The basis of the case is that Louise Aerts, the executive director of the College of Midwives, claims that the term "midwife" is specifically reserved for the traditional sense of the word about birth. The Health Professions Act protects its usage. [8] In response, the CINDEA website has recently added the following disclaimer to their website: "The role and practices of death midwives are frequently referred to on this website. Death midwives are not conventional midwives (who deal with birthing) or health professionals, nor are they registered with any of the Colleges of Midwives in Canada." [9]
The role of a death midwife is educate and empower families to exercise their innate right to care for their own dead. Death midwives or doulas "provide emotional, spiritual, and physical support at an intensely personal and crucial time. They assist people in finding meaning, creating a legacy project, and planning for how the last days will unfold. Doulas also guide and support loved ones through the last days of life and ease the suffering of grief in its early stages". [10]
Death is a situation that no one can completely prepare for. Additionally, many people do not have much experience with people close to them dying. Because of this, when it comes to the time to deal with dying there are a lot of questions and uncertainty. Pain management is only one part of end of life care; another part, of equal or greater importance at the end of their life, is the psychological aspects, including the management of close relationships. [11] [ irrelevant citation ] A doula's support can relieve stress and burdensome tasks from the family in order to provide care for the dying individual but also gives the individual psychological and emotional support in the process.
Although the specific responsibilities of a death doula vary from certification program to program, there are certain parallels through each. The services provided by a death doula can generally be broken down into two categories.
Many people who become death midwives are "volunteers who feel strongly about creating a safe space." [14] They are caring individuals who want to support patients in their end of life stages. Another reason people are attracted to this field is that "they want the contact, the involvement and they are drawn to the mission - making sure someone is not facing this [death process] alone". [15] People who become death doulas are there because they want to help the family and the patient through the whole process, as a neutral third party. Most death midwife roles are principally volunteer; further details of how their roles are funded are not well established in scholarly literature. [12]
There are many private organisations that offer education or certification programs. Certification is not available in traditional educational environments; it usually is offered in shorter, paid training sessions. However, since there is no centralised organisation for death doulas the training involved often varies by location causing inconsistencies within the role. [12] The Doula Program in New York is a volunteer organisation that focuses on the relationship between the doula and the dying. Instead of certification, volunteers submit an application in a pool of around 300, and around 12 are admitted each cycle. [16]
Public certification programs associated with hospitals and more closely tied with clinical care are restricted to a few pilot programs. These often involve training spanning multiple weeks similarly to the private programs, however, they are often more related to palliative care and putting the terminally ill patient in a more comfortable situation through clinical means and mental health counseling rather than focusing so much on the spiritual and emotional support aspect. These programs include Baylor University Medical Center's Support and Palliative Care Service's Doula to Accompany and Comfort Program, as well as New York University Medical Center's Department of Social Services nonsectarian volunteer doula program. [7]
Although still in the early stages, a number of public, accredited, Canadian post-secondary institutions are now offering training to death doulas. For example, Douglas College, a public community college, offers a course entitled Introduction to End-of-Life Doula (BREV 1100). Also, in December 2023, Vancouver Island University, a public university, graduated its first cohort of students from a course entitled Introduction to End of Life Doula (HHED 100).
The term doula came from Ancient Greek, where the term meant "slave woman," or "maid"; already present in Mycenaean Greek, the term was probably borrowed from Carian, Lydian, or more likely Pre-Greek. [17] The term doula was more commonly used again in roughly the 1960s where it often defined an individual who assisted in the birthing process. This individual was often a woman, one that not only helped during the birthing process but also provided support for women before and after the birth as well. Recently the term death doula has been coined to refer to a trained person who provides a dying individual and their family with assistance and resources. [7]
The terms both feminine and masculine doula and doulos are still currently in use in the Greek language today. The word "doula" was appropriated for use by Dana Raphael in the 1970s. Its meaning was changed. The definition in its original language means, "born a slave." These particular slaves were household slaves who tended to the very intimate needs of the mistress and master of the household. There is currently a movement in place in the United States to stop using the word bevause of its association with slavery.[ citation needed ]
The role of a death midwife is consistent with the more holistic approach taken in hospice care. As a result, some hospitals and hospice centers that deal with end of life patients have had their own staff's counselors go through death doula or death midwife training. This can be carried out through the organisation International End of Life Doula Association (INELDA), which provides training sessions across four countries. [18] The Death Midwife Training program trains hospice groups, palliative care nurses and physicians, mental health professionals, clergy, and individuals. [19] These trained professionals help provide comfort and support to dying patients and their families. Their work ensures that patients can have a peaceful and dignified end-of-life experience.
The death midwife phenomenon is associated with the death-positive movement. It has also been linked to increasing interest in alternative methods of dealing with remains, including green burials, conservation burials, and home burials. [18] Death midwives are trained to have the knowledge to provide the family with after-life alternative death care options. A goal of many death midwives is to provide information about alternatives to cremation or conventional burial, such as natural or green burial, and "flameless cremation" or alkaline hydrolysis, which is legal in 14 states. [20] Other environmentally sustainable methods of final disposition are being developed, including human composting, also known as "soil transformation" [21] "recomposition". [22] or "Terramation" [23] These alternatives help families choose options that align with their values. Many people appreciate these more natural and eco-friendly choices.
A doula is a non-medical professional who provides guidance for the service of others and who supports another person through a significant health-related experience, such as childbirth, miscarriage, induced abortion or stillbirth, as well as non-reproductive experiences such as dying. A doula might also provide support to the client's partner, family, and friends.
Palliative care is an interdisciplinary medical caregiving approach aimed at optimizing quality of life and mitigating suffering among people with serious, complex, and often terminal illnesses. Within the published literature, many definitions of palliative care exist. The World Health Organization (WHO) describes palliative care as "an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain, illnesses including other problems whether physical, psychosocial, and spiritual". In the past, palliative care was a disease specific approach, but today the WHO takes a broader patient-centered approach that suggests that the principles of palliative care should be applied as early as possible to any chronic and ultimately fatal illness. This shift was important because if a disease-oriented approach is followed, the needs and preferences of the patient are not fully met and aspects of care, such as pain, quality of life, and social support, as well as spiritual and emotional needs, fail to be addressed. Rather, a patient-centered model prioritizes relief of suffering and tailors care to increase the quality of life for terminally ill patients.
Thanatology is the scientific study of death and the losses brought about as a result. It investigates the mechanisms and forensic aspects of death, such as bodily changes that accompany death and the postmortem period, as well as wider psychological and social aspects related to death. It is primarily an interdisciplinary study offered as a course of study at numerous colleges and universities.
In medicine, specifically in end-of-life care, palliative sedation is the palliative practice of relieving distress in a terminally ill person in the last hours or days of a dying person's life, usually by means of a continuous intravenous or subcutaneous infusion of a sedative drug, or by means of a specialized catheter designed to provide comfortable and discreet administration of ongoing medications via the rectal route.
Terminal illness or end-stage disease is a disease that cannot be cured or adequately treated and is expected to result in the death of the patient. This term is more commonly used for progressive diseases such as cancer, dementia or advanced heart disease than for injury. In popular use, it indicates a disease that will progress until death with near absolute certainty, regardless of treatment. A patient who has such an illness may be referred to as a terminal patient, terminally ill or simply as being terminal. There is no standardized life expectancy for a patient to be considered terminal, although it is generally months or less. Life expectancy for terminal patients is a rough estimate given by the physician based on previous data and does not always reflect true longevity. An illness which is lifelong but not fatal is a chronic condition.
Death education is education about death that focuses on the human and emotional aspects of death. Though it may include teaching on the biological aspects of death, teaching about coping with grief is a primary focus. The scientific study of death is known as thanatology. Thanatology stems from the Greek word thanatos, meaning death, and ology meaning a science or organized body of knowledge. A specialist in this field is a thanatologist.
Ira Robert Byock is an American physician, author, and advocate for palliative care. He is founder and chief medical officer of the Providence St. Joseph Health Institute for Human Caring in Torrance, California, and holds appointments as active emeritus professor of medicine and professor of community health and family medicine at the Geisel School of Medicine at Dartmouth College. He was director of palliative medicine at Dartmouth–Hitchcock Medical Center, from 2003–14, and associate director for patient and family-centered care at the affiliated Norris-Cotton Cancer Center.
A birth attendant, also known as skilled birth attendant, is a health professional who provides basic and emergency care to women and their newborns during pregnancy, childbirth and the postpartum period. A birth attendant, who may be a midwife, physician, obstetrician, or nurse, is trained to be present at ("attend") childbirth, whether the delivery takes place in a health care institution or at home, to recognize and respond appropriately to medical complications, and to implement interventions to help prevent them in the first place, including through prenatal care. Different birth attendants are able to provide different levels of care.
End-of-life care (EOLC) is health care provided in the time leading up to a person's death. End-of-life care can be provided in the hours, days, or months before a person dies and encompasses care and support for a person's mental and emotional needs, physical comfort, spiritual needs, and practical tasks.
Rainbow Hospice and Palliative Care, founded in 1981, is one of the oldest and largest non-profit hospice and palliative care providers in Illinois.
Community Hospice & Palliative Care, also known simply as Community Hospice, is a not-for-profit hospice, which has served the Greater Jacksonville Metropolitan Area since its inception in 1979. The organization was the first hospice program in Northeast Florida and one of a few operating programs in the state when Florida began granting hospice licenses in 1981; Community Hospice received their license in 1983 and in 2008, assisted nearly 1,000 patients daily and more than 6,000 patients a year.
Nurses in Canada practise in a wide variety of settings, with various levels of training and experience. They provide evidence-based care and educate their patients about health and disease.
In the United States, hospice care is a type and philosophy of end-of-life care which focuses on the palliation of a terminally ill patient's symptoms. These symptoms can be physical, emotional, spiritual, or social in nature. The concept of hospice as a place to treat the incurably ill has been evolving since the 11th century. Hospice care was introduced to the United States in the 1970s in response to the work of Cicely Saunders in the United Kingdom. This part of health care has expanded as people face a variety of issues with terminal illness. In the United States, it is distinguished by extensive use of volunteers and a greater emphasis on the patient's psychological needs in coming to terms with dying.
Hospice care is a type of health care that focuses on the palliation of a terminally ill patient's pain and symptoms and attending to their emotional and spiritual needs at the end of life. Hospice care prioritizes comfort and quality of life by reducing pain and suffering. Hospice care provides an alternative to therapies focused on life-prolonging measures that may be arduous, likely to cause more symptoms, or are not aligned with a person's goals.
A monthly nurse is a woman who looks after a mother and her baby during the postpartum or postnatal period. The phrase is now largely obsolete, but the role is still performed under other names and conditions worldwide.
In 2006, hospice and palliative medicine was officially recognized by the American Board of Medical Specialties, and is co-sponsored by the American Boards of
Nursing in Japan did not develop as an occupation until the end of the nineteenth century. Initially introduced only in Tokyo in the late 1860s, small schools utilizing Western models were being opened by the late 1880s. In response to disaster relief, the Japanese Red Cross became an integral part of nursing development. By 1915, nurse registration had been established and public health nurses began working throughout the country. Nursing universities were established in the twentieth century and regulations were passed to develop standards for training and public health.
Deathbed phenomena refers to a range of experiences reported by people who are dying. There are many examples of deathbed phenomena in both non-fiction and fictional literature, which suggests that these occurrences have been noted by cultures around the world for centuries, although scientific study of them is relatively recent. In scientific literature such experiences have been referred to as death-related sensory experiences (DRSE). Dying patients have reported to staff working in hospices they have experienced comforting visions.
Midwives in the United States assist childbearing women during pregnancy, labor and birth, and the postpartum period. Some midwives also provide primary care for women including well-woman exams, health promotion, and disease prevention, family planning options, and care for common gynecological concerns. Before the turn of the 20th century, traditional midwives were informally trained and helped deliver almost all births. Today, midwives are professionals who must undergo formal training. Midwives in the United States formed the Midwifery Education, Regulation, and Association task force to establish a framework for midwifery.
Carondelet Health Network is a large Catholic health care provider based in Tucson, Arizona. It has five facilities: Carondelet St. Mary's Hospital, Carondelet St. Joseph's Hospital, Carondelet Neurological Institute, Carondelet Heart & Vascular Institute, and Carondelet Holy Cross Hospital in Nogales, Arizona.