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
of deathing process
includes the three major stages of dying/death |
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before
(life-threatening illness
and terminal diagnosis), |
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during
(active dying and death),
and |
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after
(post-deathcare final
rites, burial or cremation, funeral
or memorial, bereavement) |
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DWENA
a
new acronym for DeathcareWholistic,
Ecological, and/or Natural Alternatives;
inclusive of all alternative approaches to dying
and death, and a variety of pan-death services. It
is generally similar to the term 'community deathcare'.
Clarification
of new terms: After
winning the right to continue to use the term
'death midwife' in the lower Supreme Court (CMBC
vs MaryMoon),
it was lost in the appeal (CMBC/AGBC
vs MaryMoon).
Although
we are continuing to explore ways to reclaim the
term 'death midwife', we are legally bound (in
BC) to use new terms for the time being. The
terms we are currently using are:
Practitioner
of death midwifery:
someone who is practicing the philosophy of midwifery
applied to deathcare, through the pan-death continuum.
Pan-death
guide: someone who offers death midwifery
support in a continuum of pre-death (EOL/death
doula role), soon after death (home funeral guide
role), and funeral/memorial ceremonies (celebrant
role).
For
the most part on this site, 'practitioner of death
midwifery' and 'pan-death guide' will be used
interchangeably. We realize that this
may be a little confusing. However, we felt
it was important to retain the connection to 'death
midwifery' (philosophy), as well as have a term
that describes 'what they do' (approach in practice)
as 'death midwife' did both.
Disclaimer: Practitioners of death midwifery/pan-death guides
are not conventional midwives (who deal with birthing)
or health professionals, nor are they members
of any of the Colleges of Midwives in Canada
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Values
of the Modern Pan-Death Movement
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compassion,
empathy, respect, equality and dignity |
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honouring
a sense of the sacred that is in death, and
reclaiming it as part of the whole natural
life cycle |
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supporting
the on-going development of a healthy attitude
towards death in our culture, and rites, vigils,
or activities that are personally meaningful |
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empowering
individuals and their families to make personalized
choices, and to participate directly in the
pan-death process to whatever degree they
choose |
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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 |
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supporting
both the emotional/spiritual and the practical
aspects of the pan-death journey for both
the death journeyer and their family |
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maintaining
a clear sense of self-boundaries and self-care
for the practitioner, 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
DWENA practitioners support the rights of the
Death Journeyer and their families to:
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choose
a pan-death process that is meaningful to
them and consistent with their values (ethnic,
cultural, religious/spiritual or personal) |
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carry
out as much of the process (before-and-after-death
care, funeral/memorial service, etc.)
on their own as they are comfortable with |
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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 |
(return to top)
Development of
the Modern Pan-Death Movement
In many ancient cultures, those who tended the
birthing mother and her child were often 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. |
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"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 Torontos 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)
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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 Canadians are
not aware that, in most situations, 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 post-deathcare can be a final
tribute to your person 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 roles of alternative/DWENA practitioners,
such as the practitioners of death midwifery,
began primarily in the 1990s, as
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birth
midwives became commonly available, and those
who work with death began to appreciate our
ancestors' joint role of midwives to birth
and death |
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hospices
introduced a more humane and personalized
approach to dying than is generally possible
in a hospital ward or long-term care facility |
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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 |
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families |
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questioned
the expense of commercial funeral services
and whether what they offered truly represented
their values; |
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chose
to personalize the funeral ceremony, according
to what was specifically meaningful to them
and their loved one; and |
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considered
taking on more of the practical facets of
the pan-death process including doing
deathcare themselves but found a lack
of information and support available for doing
so; |
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and
those already offering some facets of DWENA
pan-death services recognized that |
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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 |
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the
law does not require the deceased to be moved
to a funeral home
in fact, in most cases, all of the post-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, DWENA practitioners, or
any combination of these. [Note:
many of these elements would be done by
the death journeyer or family, in any case;
but there are a few more of them
mostly in stages 5 & 6 if the
choice is to die at home and/or have a 'home
funeral'.] |
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1. |
Advance-care
Planning or EOL (end-of-life)
education and preparation |
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advance
planning (Advance
Directives/Living Wills, Representation
Agreements/Health Proxies/Health
Powers of Attorney, legal and
estate affairs) |
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discussion
with family and friends about
EOL wishes |
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advance
planning for caregiving |
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2. |
After
the life-limiting/terminal
diagnosis |
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coming
to terms with the diagnosis, and
dealing
with 'anticipatory grief'
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deciding
on what treatment is reasonable
for further 'quality of life' |
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creating
a 'life plan' for the death journeyer's
remaining time
which might include making a video
or audio 'life story', etc. |
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registering
with a hospice/palliative care
provider and/or caregiver services |
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pre-arranging for the body to
return home
(if the family
so chooses)
if death occurs in a hospital,
hospice or residential facility |
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3. |
During the active
dying stage |
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supporting
the 'comfort care' provided by
the palliative-care team |
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finding
providers of appropriate alternative
treatments for pain-relief/etc.
(if desired) |
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arranging
appropriate visitation for 'final
farewells' and/or a death vigil,
or living 'celebration of life' |
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spiritual/emotional
support (including
support to find appropriate clergy,
counsellors, etc.) for
both the death journeyer and family/friends |
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4. |
The
transition of death itself |
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support
for the release of the soul (according
to the death journeyer's and their
family's beliefs) |
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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 |
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5. |
Immediately
post-death |
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support
for spiritual/religious traditions
concerning the soul |
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contacting
a funeral director (if
that is the family's choice)
or coroner (if
death itself, or its timing, is
unexpected), OR |
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dealing
with the initial physical needs
of the body (washing/dressing
the body, dealing with release
of body fluids, closing
eyes and mouth,
ensuring that the body is cooled,
etc.) with
or without the guidance of a DWENA
practitioner and possibly
building or decorating a casket |
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filling
out and filing all necessary paperwork/certificates |
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addressing
the obituary, and other ways of
informing family and friends of
the death |
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6. |
Final
arrangements |
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filling
out and filing permits to transport
the body (if not
using the services of a funeral
director) |
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arrangements
for burial or cremation |
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developing
and performing a funeral and/or
memorial service |
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arranging
for a headstone and/or the spreading
of ashes |
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7. |
Care
for bereaved family |
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arranging
for on-going support through the
first weeks/months, including
a
specialist in grief counselling
(if needed) |
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a
year-anniversary check-in, or
other kinds of 're-honouring your
dead' events |
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Emerging DWENA
Practitioners within
the
Modern Pan-Death Movement
There
are a variety of DWENA 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
a range of death-related 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 revived 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.
Practitioner of death
midwifery/pan-death guide
CINDEA
has chosen to define these interchangeable terms
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).
This
support essentially combines (and
gives a continuum of) the roles of death
doula, home funeral guide, and funeral celebrant.
[Disclaimer:
Practitioners of death midwifey are distinctly
different from (birth) midwives, although we share
a similar philosophy. Pan-death
guides are not health professionals, nor are they
registered with any of the Colleges of Midwives
in Canada.]
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 regularly
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 practitioner.[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
and Dying Guide
a new National Home Funeral Alliance term
that includes support both before and after death,
but not necessarily extending to funeral celebrant
or grief support services. [Based
on the National Home Funeral Alliance definition]
EOL/Death
Doula
or Doula for the Dying
a practitioner 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 some 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/Zoom
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
pan-death guide), 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 (similar
to U.K. 'soul
midwife').
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 a practitioner of death
midwifery/pan-death guide, please click on CINDEA
Recognition and then go to General Requirements
and the Questionnaire. [Please
note that this is not a third-party certification,
only an acknowledgement of training/experience.]
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Why
Use the Services of a Modern DWENA Practitioner?
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 responsibility.The
required documents (Death Certificate,
Body Transfer Permit, etc.) are available,
usually from the local Vital Statistics office
and/or online.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
and/or graveside service on their own (although
the cemetery will require one of their employees
to attend and oversee the practical aspects of
burial). Memorial services
have no restriction as to who plans them, where
they are, and when they occur: they are often
held 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-deathcare 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 DWENA
practitioners, 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 to be changed in order to provide the physical
post-deathcare.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 casket, 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 DWENA practitioner at all?
Modern alternative
death-care practitioners (depending
on what they are specifically offering)
are committed to guiding the family through
the process |
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making
sure that all aspects of the home funeral
and other concerns are covered |
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providing
necessary documents and/or supporting
the family to get them |
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guiding
the physical post-deathcare (if
the family chooses to do it) |
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recommending
appropriate additional services that
the family may not know about |
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advocating
for the Death Journeyer's/family's wishes |
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negotiating
for specific 'a la carte' Funeral Home
services where necessary |
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ensuring
that their choices are fulfilled re
the specifics of burial or cremation,
and funeral/memorial ceremonies. |
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The
services of a DWENA practitioner 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 doing
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.(return
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