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

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

 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

 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?

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

 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

 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

 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)

 Hospice (and palliative care) is but ONE of several options that should be discussed  Life-prolonging measures  Disability management versus prolonging end-of-life

 Rituals of comfort  Rituals of transition  Favored daily routines

 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?

 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?

 Sources: the individual, family members, staff  Document the choices/preferences in a central location  Observation, observation, observation

 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?

 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.

 It is not a substitute for Legal documents  Not an Advance Directive  Not a Living Will

 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

 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)  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)  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  possible alternatives to the treatment  potential consequences of consenting to or rejecting treatment

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

 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: ts/documents/GRIEFRESOURCE.pdf

 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

 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

 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

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.

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