Download PPT for end of life issues

Aging with a Developmental
Disability: End of life and
Bereavement Issues
This training was made possible by generous
grants from the New Jersey Council on
Developmental Disabilities and from Spectrum
for Living’s Endowment Fund.
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People with DD face several barriers to
discussing this topic.
It is vitally important to acknowledge these
barriers, difficulties, hesitancies
◦ inspires creative thinking
◦ inspires new strategies
◦ demonstrates commitment to support people with
DD holistically
Guiding principles:
 Preferences, wishes, choices of the person
and those who know them best
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Facilitation of good communication
Community-based relationships and
companionship
Health and Safety
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A good person-centered plan promotes
informed decision making
Reflects the person’s desires about:
◦ What types of activities to engage in
◦ How they prefer to be engaged
 When and where?
 Preferred daily and weekly routines
◦ With whom
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What are their favorite things to do and what
is most important to them?
Are there favorite photos of family or friends?
Are there material objects that provide
comfort and joy, such as special clothing,
bedding, or memorabilia?
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What are the roles and responsibilities of
those who provide support (families, friends,
staff, etc.)?
◦ Who are the important people in the individual’s life
who know how the person prefers to be supported?
Start while the person is still healthy.
Examples:
 Talking with families at the beginning of
services
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Annual IHP meetings
Special meetings specifically focused on
person-centered end-of-life planning
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Increasing dependency of others (paid or
unpaid supports) to make decisions for the
aging or ill person
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A complex healthcare system
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Policy and regulations
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Issues of informed consent and capacity
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Important to formally train staff to acquire
skills of comforting individuals who have
experienced loss.
Training should Include:
◦ family and cultural traditions; cultural competence
◦ rituals leading up to or following death
◦ techniques/strategies for gathering meaningful
information about end-of-life preferences
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Grief and loss teams:
◦ A team of people in an agency who are trained and
feel committed to assisting staff and consumers
with grief and loss issues. That team can include
community resources such as clergy or hospice
staff.
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See: Circle of Support for Direct Support
Workers (Beth Mount & John O’Brien)
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Hospice (and palliative care) is but ONE of
several options that should be discussed
Life-prolonging measures
Disability management versus prolonging
end-of-life
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Rituals of comfort
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Rituals of transition
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Favored daily routines
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Who should be present when the person is
dying?
How would the person like to be made
comfortable?
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How would the person prefer to be treated?
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What are acceptable forms of treatment?
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What are unacceptable forms of treatment?
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What are preferred religious or spiritual
supports, if any?
What is important to the person?
What are the person’s hopes, dreams, and
fears?
What are the person’s final wishes?
Who is this person’s choice of a surrogate
decision maker?
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Sources: the individual, family members, staff
Document the choices/preferences in a
central location
Observation, observation, observation
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Is there a certain type of music that the
person appears to enjoy?
Are there preferred or favorite foods?
Are there certain medical procedures that
cause the person considerable fear?
◦ needles?
◦ dialysis
◦ lighting in the doctor’s office?
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Discussions and observations are on-going
and flexible, and choices/preferences can and
do change sometimes.
They key is to continue these conversations,
and to record choices and preferences in a
central place.
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It is not a substitute for Legal documents
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Not an Advance Directive
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Not a Living Will
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A legal document
Allows a person to leave orders about their
health care in the event that they become
unable to do so for themselves
Must be 18 or older to complete an advance
directive
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LIVING WILL
(Source: Mayo Clinic web resource)
◦ A written, legal document that spells out the types
of medical treatments and life-sustaining measures
you do and don't want.
 E.g. mechanical breathing (respiration and ventilation)
 E.g. tube feeding or resuscitation
MEDICAL POWER OF ATTORNEY (PoA) (Source: Mayo Clinic web
resource)
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A legal document that designates an individual
(a.k.a. your health care agent or proxy) to make
medical decisions for you in the event that you're
unable to do so.
Sometimes called a Durable Power of Attorney for
Health Care.
Not the same as power of attorney authorizing
someone to make financial transactions for you.
(Source: Mayo Clinic web resource)
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A request to not have CPR if your heart stops
or if you stop breathing.
Advance directives do not have to include a
DNR order
It is not necessary to have an Advance
Directive in order to have a DNR order.
The person being treated receives and
understands information from the doctors
about :
 the risks and benefits of the treatment
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possible alternatives to the treatment
potential consequences of consenting to or
rejecting treatment
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A patient’s ability to understand the
benefits and risks of a proposed medical
treatment and its alternatives, and to reach
an informed decision.
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Various strategies that agencies can use to
support someone to grieve the loss of a loved
one or a valued social connection
Boggs Center website has full descriptions of
a number of methods at:
http://rwjms.umdnj.edu/boggscenter/produc
ts/documents/GRIEFRESOURCE.pdf
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Getting to know the Neighborhood: Utilizing
community resources to provide a diversity of
support
◦ Neighbors
◦ Religious organizations
◦ Local business employees or owners that have gotten to
know the person
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Remembering the details of the death
◦ Sharing details of how someone died as a way of coping
with the loss
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Sharing about the news about the death:
◦ Take time to center your thoughts
◦ Prepare what you will say
◦ Do not try to “soften the blow”
◦ Euphemisms can be confusing
◦ Encourage open and honest processing of the death
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Letting the neighbors know about the death:
◦ This may include anyone in the community or circle of
support
◦ Everyone should be notified and given the opportunity to
mourn the loss or celebrate the life of the person
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Visiting the funeral home and/or attending the
funeral
◦ Opportunity to say good bye
◦ Give people an opportunity to decide whether or not
they want to attend
Coping without the loved one:
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Promote open communication about how
people are feeling
Take notice of how people are dealing,
including behaviors, agitation or depression
Mourning may continue for weeks, months,
years.
Nurturing a community of acceptance and
support by remembering the loved one:
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Encourage people to remember the person
who died in a way that is meaningful for them
Keep in mind that people handle grief
differently