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On this page
Definitions of terms used by CINDEA
Values of the Modern Pan-Death Movement
Rights of Death Journeyer and Family
Development of the Modern Pan-Death Movement
7 stages of the Pan-death Process
Emerging Practitioners within the Modern Pan-Death Movement
Recognition from CINDEA
Why Use the Services of a Modern Alternative Death-care Provider?


The Emerging Modern
Pan-Death Movement

 

Definitions of terms used by CINDEA

Death Journeyer the person who is making the journey through life-threatening illness, terminal diagnosis, active dying, death, and beyond (however they understand 'beyond')

Family includes blood and marriage family members, but also any individual or community members that the Death Journeyer considers to be their chosen or functional family.

Pan-death process includes the three major stages of dying/death
  before (life-threatening illness and terminal diagnosis),
  during (active dying and death), and
  after (final rites, burial or cremation, funeral or memorial, bereavement)

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Values of the Modern Pan-Death Movement

  compassion, empathy, respect, equality and dignity
  honouring a sense of the sacred that is in death, and reclaiming it as part of the whole natural life cycle
  supporting the on-going development of a healthy attitude towards death in our culture, and rites, vigils, or activities that are personally meaningful
  empowering individuals and their families to make personalized choices, and to participate directly in the pan-death process to whatever degree they choose
  understanding that both planning for, and experiencing, a death are complicated issues and that families may need on-going support during the pan-death process
  supporting both the emotional/spiritual and the practical aspects of the pan-death journey for both the Death Journeyer and their family
  maintaining a clear sense of self-boundaries and self-care, while focusing on the needs of the death experience of the Death Journeyer and their family

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Rights of Death Journeyer and Family


Pan-death providers support the rights of the Death Journeyer and their families to:

  to choose a pan-death process that is meaningful to them and consistent with their values (ethnic, cultural, religious/spiritual or personal)
  to carry out as much of the process (before-and-after-death care, funeral/memorial service, etc.) on their own as they are comfortable with
  to have access to all required documentation and available support resources, so that the Death Journeyer and their family are able to experience the pan-death process in the way that is most meaningful for them


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Development of the Modern Pan-Death Movement


In many ancient cultures, those who tended the birthing mother and her child were usually also the people who cared for the dying. They facilitated and safeguarded the two major life-passages, birth and death
along with the spiritual advisors of their traditions. Whether named 'midwife' or not, these people's experience and skills guided the birth or death journey with family members (including children) and neighbours directly involved in the whole of the pan-birth or pan-death process.Birth and death however they were celebrated were community events: and every member of that community had their role to play (whether directly or indirectly).

And so it was, in all probability, throughout the whole of our species' history, until the Industrial Age and the general institutionalization of community rites.

In the Western and urbanized world, we have become used to people dying in hospitals or long-term care facilities (as more than 50% of North Americans do).Family members often live at great distances from each other, and therefore can only provide minimal support to the Death Journeyer and those caring for them.Most of us do not live in communities that are committed to supporting the family through the practical and emotional stress of caring for their dying loved one.

Although the palliative approach to end-of-life care is presently developing exponentially, most doctors were trained to maintain life 'at all costs' and may still encourage medical intervention that does not significantly add to the patient's quality of life or that extends their lives beyond what they personally wished for.Doctors, nurses, counsellors, clergy, and other support services may have minimal connection with each other.They provide specific and appreciated services, but generally have limited contact with the Death Journeyer and their families; and therefore are not likely to have any depth of understanding of their personal wishes or values.Although we are fortunate in Canada to have universal medical care, we may not live where palliative care teams which facilitate the Death Journeyer to die at home with all possible 'comfort care' are available.   "I worry that as we have put medicine out there as a potential saviour and, in fact, almost a new religion over the last 100 years," said Rob Fowler, one of about 20 critical-care physicians here (critical-care unit at Toronto’s Sunnybrook Health Sciences Centre), "people have increasingly bought what we've sold: that cancer can be beaten and every death is a preventable death - that every death is, in some way, a failure." ( from Globe and Mail end-of-life series, November 26, 2011 Critical care: Spending 10 weeks with patients facing death by Lisa Priest)

Pre-death and post-death care have been separated into distinctly disconnected services provided by the medical profession before death, and by funeral homes and cemeteries after death with little continuum between them.Although some funeral homes specialize in simple and inexpensive services, families can easily find themselves paying $8,000 or more for funeral and burial expenses.Especially if the family has been caring for the Death Journeyer at home and bearing most of the costs of doing so, funeral expenses for them may be an extra hardship that is difficult to recover from, amidst grief, estate/will issues, etc.

Although there are circumstances where funeral home services are necessary (for example, embalming if a body needs to be transported over a long distance), the majority of people are not aware that, in many places, the law does not require that the deceased be moved to a funeral home after death.Being removed from the traditions of caring for our own dead, we have lost a sense of how valuable doing so can be.Directly participating in the after-death care can be a final tribute to your loved one and support a healthy grieving process quite aside from being considerably less expensive.For some people, caring for their own dead is simply intuitive something that makes sense to them, despite cultural norms: for others, it is part of their commitment to doing things naturally and/or ecologically.

Twenty percent of the world's population does not affiliate with any religion; and particularly in the Western world, a much larger percentage are not active in any religious organization or faith community many describing themselves as spiritual, but not religious.Therefore, the Death Journeyer may not have access to any kind of spiritual/emotional support through the final stages of death; nor may there be any community support (practical or spiritual/emotional) for the family caring for them.

Reclaiming the role of pan-death providers, such as the Death Midwife, began primarily in the 1990s, as

  Birth Midwives became commonly available, and those who work with death began to appreciate our ancestors' joint role of midwife to birth and death
  hospices introduced a more humane and personalized approach to dying than is generally possible in a hospital ward or long-term care facility
  more palliative care became available for those who chose to die at home; and families became re-familiarized with the value of caring for the Death Journeyer themselves
  families
questioned the expense of commercial funeral services and whether what they offered truly represented their values;
chose to personalize the funeral ceremony, according to what was specifically meaningful to them and their loved one; and
considered taking on more of the practical facets of the pan-death process, but found a lack of information and support available for doing so;
  and those already offering some facets of pan-death services recognized that
many Death Journeyers and their families were looking for alternatives (for both dying at home and funeral services) that were more personalized and participatory, and/or offered a more natural and ecological option
the law does not require the deceased to be moved to a funeral home in fact, in most cases, all of the after-death care can be done at home by the family.

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7 Stages of the Pan-Death Process

Each of these stages may omit some elements and include others, depending on what the Death Journeyer or their families/friends need.In any particular case, the actions listed below may be done by the Death Journeyer themselves, their family and friends, hospice staff/volunteers, alternative pan-death practitioners, or any combination of these.   [Note: many of these elements would be done by the Death Journeyer or family, in any case; but a few more of them — mostly in stages 5 & 6— if the choice is to die at home and/or have a 'home funeral'.]

   
1. Advance-care Planning or EOL (end-of-life) education and preparation
 
Advance Planning (Advance Directives/Living Wills, Representation Agreements/Health Proxies/Health Powers of Attorney, legal and estate affairs)
discussion with family and friends about EOL wishes
advance planning for caregiving
 
2. After the life-limiting/terminal diagnosis
coming to terms with the diagnosis, and dealing with 'anticipatory grief'
deciding on what treatment is reasonable for further 'quality of life'
creating a 'life plan' for the Death Journeyer's remaining time — which might include making a video or audio 'life story', etc.
registering with a hospice/palliative care provider and/or caregiver services
pre-arranging for the body to return home (if the family so chooses) if death occurs in a hospital, hospice or residential facility
 
3. During the active dying stage
supporting the 'comfort care' provided by the palliative-care team
finding providers of appropriate alternative treatments for pain-relief/etc. (if desired)
arranging appropriate visitation for 'final farewells' and/or a death vigil
spiritual/emotional support (including support to find appropriate clergy, counsellors, etc.) for both the Death Journeyer and family/friends
 
4. The transition of death itself
support for the release of the soul (according to the Death Journeyer's and their family's beliefs)
vigils/wakes and other ways of 'being present with the Death Journeyer' (music/singing, prayers, etc) and supporting the family/friends who are not able to be present
 
5. Immediately post-death
support for spiritual/religious traditions concerning the soul
contacting a funeral director (if that is the family's choice) or coroner (if death itself, or its timing, is unexpected) or
dealing with the initial physical needs of the body (washing/dressing the body, dealing with release of body fluids, closing eyes and mouth, etc.) — with or without the guidance of an alternative death-care practitioner — and possibly building or decorating a casket
filling out and filing all necessary certificates
addressing the obituary, and other ways of informing family and friends of the death
 
6. Final arrangements
filling out and filing permits to transport the body (if not using the services of a funeral director)
arrangements for burial or cremation
developing and performing a funeral and/or memorial service
arranging for a headstone and/or the spreading of ashes
   
7. Care for bereaved family
arranging for on-going support through the first weeks/months, including a specialist in grief counselling (if needed)
a year-anniversary check-in, or other kinds of 're-honouring your dead' events

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Emerging Practitioners within the Modern Pan-Death Movement

There are a variety of practitioners emerging as people recognize the need for simpler, more naturally or ecologically focused, more logistically-continuous, and/or more hands-on options for dying/death care.Most of these practitioners are already involved in pan-death services through hospice organizations or palliative care (nurses, personal/home-care workers, volunteers, etc.); or pastoral/spiritual-care services; or as end-of-life or grief counsellors, former funeral directors, or other related services.There is little standardization of these new roles and their definitions as yet: and many providers offer more than one facet while not necessarily providing the full spectrum of pan-death services.The following definitions are, therefore, very initial and generalized.


Death Midwife
a term that is used by many pan-death practitioners, with somewhat different meanings although all uses refer to supporting the Death Journeyer and their families in personal choice and meaningful alternatives in the pan-death process.CINDEA has chosen to define the term as specifically referring to a practitioner who is committed to offering services (information, guidance, counselling, etc.) for all facets of the pan-death process, and thereby providing a continuum of direct support throughout the 7 stages (as defined above, and in further detail on the Death Midwifery page).

Thanadoula those who have been trained in a contemplative approach to end-of-life care, including bio-psycho-social-spiritual, medical and legal dimensions of dying.To our knowledge, this term is only being used by the Institute of Traditional Medicine in Toronto; however, their program covers a similar range of training in services as would be expected of a CINDEA-recognized Death Midwife.[The Institute of Traditional Medicine in Toronto offers a 6-month training program; unfortunately ITM doesn't provide a further description of the course on its site, but you can email them for further information.]


Death Doula
or Doula for the Dying
a person who focuses on accompanying the dying and/or their families during the dying process.Their unifying trait, regardless of special skills or gifts or particular calling, is that they emotionally/spiritually and practically support the dying person until their death (although individual Death Doulas may carry on their services after the death). [Based on a definition from Deanna Cochran Doulas for the Dying.]


11th Hour Volunteer
often a hospice volunteer, who supports and witnesses the final dying process.


Home Funeral Guide
or Home Funeral Consultant
(HFG or HFC) The Home Funeral Guide primarily focuses on directly supporting a family to orchestrate the post-death care and the funeral, and carry out the necessary functions that are customarily delegated to a funeral director.This means that the family makes all decisions; prepares the body for burial or cremation; and organizes a lying-in, vigil or wake.The HFG provides relevant local information on resources and any necessary documents.The HFG may also work in conjunction with a funeral director, who the family employs to provide specific 'a la carte' services (e.g.: transportation, body preparation, documentation) that the family do not wish to, or cannot, provide. [Based on the definition from Final Passages.] A Home Funeral Consultant offers the same information and guidance (re legalities, paperwork, and transportation, where available), but does so indirectly almost entirely via phone, email or Skype consultations.


EOL Consultant
or Educator
focuses on offering education on all end-of-life (EOL) matters (possibly including some services offered by HFG/HFC or Death Midwife), to both individual families and community groups/etc.


Funeral Celebrant
focuses on helping a family develop a funeral, memorial or celebration of life service that is highly individualized to reflect the personality, lifestyle and beliefs of the person who died [Based on a definition from Canadian Funerals On-Line.]


Soul Midwife/Doula
focuses on the spiritual aspects of dying as the soul moves out of the body and beyond.


Grief/bereavement counsellor focuses on the personalized effects of the loss generally after the death, but may include support for anticipatory grief (pre-death) as well.   Counsellors may be available through a local hospice society, various counselling agencies within one's area, or grief support groups (in person or online).   Grief counsellors are not necessarily involved in the emerging pan-death movement, but are a necessary resource to its development.

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Recognition from CINDEA


If you are interested in receiving recognition from CINDEA as one of these types of practitioners (excluding Grief/bereavement counsellors), please click on CINDEA Recognition and then go to Recognition for Other Roles in Pan-Death Process and Questionnaire for a DD, TD, HFG, or FC.

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Why Use the Services of a Modern Alternative Death-care Provider?


The family can do it all themselves
    Unbeknownst to most urban people, a family can undertake most of the facets of the pan-death process on their own (with the help of modern hospice/palliative care teams).In most cases, the law does not prohibit them from doing post-death care themselves (as long it does not include embalming) rather than moving the body to a funeral home, where its employees take on that care.The required documents (Death Certificate, Body Transfer Permit, etc.) are available, usually from the local Vital Statistics office.Although arrangements do need to be made for burial or cremation with a cemetery or crematorium, those are in any case made by the Death Journeyer themselves (if in advance) or their family (after death).

Death Journeyers or their families can plan a funeral (graveside) service on their own (although the cemetery will require one of their employees to attend and oversee the practical aspects of burial): and memorial services have no restriction as to who plans them, where they are, and when they occur (often weeks or months after death to accommodate the needs of the family, or family/friends who may be travelling long distances to attend).

Given the actual lack of legal restrictions on the family, in terms of handling the post-death care and arrangements themselves and the considerable monetary savings in doing so why would a Death Journeyer or their family choose to use the services of one of the modern pan-death providers, especially once they are aware that 'doing it themselves' is an option?

Difficulties in doing it yourself     A death amongst a family or friends is always a difficult transition.Even if the death is expected, and/or the Death Journeyer's condition has been failing over months or even years and their death is a welcome release from pain and suffering there is a shock value to the actual death.'Anticipatory grief' is not the same as the finality of the grief from knowing that the Death Journeyer has passed out of our world.

Even if most of the practical decisions have been made in advance (and they often aren't), there can still be an overwhelming rush of further arrangements to be made at the actual time of death.The Death Journeyer's wishes may have changed in their last days.Since one never knows the actual timing of the death, the usually busy schedules of family and friends have be changed in order to provide the specific care of post-death.Those who have been providing at-home care or the regular visitation at a hospital or residential care facility while their loved one was dying may be already exhausted, and the sudden loss of that particular kind of intensive care and connection to the Death Journeyer can be a shock to their system (even if the loss was expected and perhaps even desired as an end to suffering).

The family may not have the time/energy or know-how to research the information required to undertake all aspects of post-death care for themselves.While some families may feel that taking on all of the practical requirements (obtaining Death Certificates/etc. and supplies needed for post-death care, building a coffin, etc.) is an important part of their 'last offering' to the Death Journeyer, others will feel daunted by the sheer number of things to attend to.[Please note that while this website exists to make the information on pan-death options available to Canadians conveniently in one site each province has slightly different rules.Also, it is not possible for us to provide access to all of the local resources that would be required in any specific area of the country.]

Why use a alternative death-care provider at all?     Modern alternative death-care providers (depending on what they are specifically offering) are committed to guiding the family through the process
  making sure that all aspects are covered
  providing necessary documents and/or supporting the family to get them
  guiding the physical post-death care (if the family chooses to do it)
  recommending appropriate services that the family may not know about
  advocating for the Death Journeyer's/family's wishes
  negotiating for individual Funeral Home services where necessary
  ensuring that their choices are fulfilled re the specifics of burial or cremation, and funeral/memorial ceremonies.

The services of an alternative death-care provider are likely to cost less than similar services provided by a Funeral Home in part, because they are offering guidance for the family to be 'hands on', instead of taking over the work for them; in part, because they don't have the overhead that a Funeral Home does.Most importantly, their focus is ensuring the fulfillment of the personal wishes/choices of the Death Journeyer/family especially if those choices are different from the general culturally-expected traditions.

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