Aging Well: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.

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

End-of-life: a difficult topic of discussion for anyone…

Guiding principles: Preferences, wishes, choices of the person

and those who know them best Facilitation of good communication Community-based relationships and

companionship Health and Safety

Person-Centered Planning for End-of-Life

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

Person-Centered Planning

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?

Some questions to consider …

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?

Some questions to consider…

Start while the person is still healthy.Examples: Talking with families at the beginning of

services

Annual IHP meetings

Special meetings specifically focused on person-centered end-of-life planning

START EARLY…

Increasing dependency of others (paid or unpaid supports) to make decisions for the aging or ill person

A complex healthcare system Policy and regulations Issues of informed consent and capacity

Some Specific Barriers

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

Training Staff & Individuals

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.

See: Circle of Support for Direct Support Workers (Beth Mount & John O’Brien)

Training Staff & Individuals

Hospice (and palliative care) is but ONE of several options that should be discussed

Life-prolonging measures

Disability management versus prolonging end-of-life

Discuss the FULL RANGE of End-of-life care options…

Rituals of comfort

Rituals of transition

Favored daily routines

Know The Person Being Supported

Who should be present when the person is dying?

How would the person like to be made comfortable?

How would the person prefer to be treated? What are acceptable forms of treatment? What are unacceptable forms of treatment?

Document End-of-life Choices

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?

Document End-of-life Choices

Sources: the individual, family members, staff

Document the choices/preferences in a central location

Observation, observation, observation

Strategies For Gathering Information

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?

Strategies For Gathering Information, cont’d…

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.

Strategies For Gathering Information, cont’d…

It is not a substitute for Legal documents

Not an Advance Directive

Not a Living Will

What a Person Centered End-of-life Plan is NOT:

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

What Is An Advance Directive For Health Care?

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

Examples Of Advance Directives

MEDICAL POWER OF ATTORNEY (PoA) (Source: Mayo Clinic web resource)

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.

Examples Of Advance Directives

(Source: Mayo Clinic web resource) 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.

What Is A DNR Order?

The person being treated receives and understands information from the doctors about :

the risks and benefits of the treatment possible alternatives to the treatment potential consequences of consenting to or

rejecting treatment

What is “Informed Consent”?

A patient’s ability to understand the benefits and risks of a proposed medical treatment and its alternatives, and to reach an informed decision.

What is “Decision-Making Capacity” (For NJ Residents)?

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/products/documents/GRIEFRESOURCE.pdf

Supports For Dealing With Grief And Loss Of Others

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

Remembering the details of the death◦ Sharing details of how someone died as a way of coping

with the loss

Supports For Dealing With Grief And Loss Of Others

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

Supports For Dealing With Grief And Loss Of Others

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

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

Supports For Dealing With Grief And Loss Of Others

Coping without the loved one: 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.

Supports For Dealing With Grief And Loss Of Others

Nurturing a community of acceptance and support by remembering the loved one:

Encourage people to remember the person who died in a way that is meaningful for them

Keep in mind that people handle grief differently

Supports For Dealing With Grief And Loss Of Others