HELP ME UNDERSTAN

D…Anne Dare, LMSW

adare@houstonhospice.org

Anna Sallee, PhD, RN, CCRN

asallee@houstonhospice.org

Help me understand

So I can

Help you understand

The patient is NOT

dying because he is on hospice.

The patient is on hospice

because he is dying.

CREATING A RELATIONSHIP

Develop trust Keep promises Be open and flexible Accept responsibility / accountability

Be sensitive Choose your words carefully Silence is golden

FIND OUT WHAT THEY KNOW // UNDERSTAND How much time did they have to

process the need for hospice before the referral was made?

What were they told when hospice was recommended?

What was their pre-existing idea about hospice and palliative care?

What is the patient/family perception of the dying process?

THE FIRST STEP: EXAMINE OURSELVES Examine our own value belief

system to be sure we don’t impose it on others.

What is our perception of this family and where did it come from?

Do they remind us of past families?

Do they remind us of our own family?

UNDERSTANDING

TerminalPrognosis Decline

Hospice

Community perception?

When were they told?

How?

By whom?

Realistic expectationsvs

the Disney effect

Previous experiences?

FamilyPatientPatientFamily

Patient Family

WHAT OTHER BARRIERS EXIST?

Family dynamicsWho is in charge? Is it who the patient wants to be in charge?

Does the family think the patient can speak for themselves when in actuality they cannot?

Does the family think the patient can no longer speak for themselves when in actuality they can?

Family dynamics (cont.)

Is there a designated decision maker?

How is the decision maker coping?

Is there an “11th hour” relative creating dissent?

OTHER BARRIERS (cont)

Financial

Is there money for the funeral and burial?

Is the family from out-of–town and experiencing the cost of lodging and meals?

OTHER BARRIERS (cont) Additional stressors

Is this the only challenge going on in the family?

Is the caregiver having health problems?

Are there small children in the home?What is the patient’s role in the family?

Have there been other recent deaths?

Were there grieving problems in the past?

Are there relatives in the military?Are there relatives in prison?

PROVIDE THE INFORMATION PATIENTS AND FAMILIES NEED

Investigate their value belief systemsAre they able to honor the patient’s stated wishes prior to their true understanding of what the end-of-life “looks like”?

What is the impact of cultural beliefs… is there value in suffering?

How do they define a miracle?

Determine the patient’s personal desires early in the process.

What does the patient hope for at the time? If the patient is unresponsive, what is the family’s understanding of what the patient would want?

Home vs facilityPain managementFeeding / hydrationResuscitation status

Evaluate disconnects among the patient and family membersWhere is the disparity?How do we facilitate unified goals?Provide information on options within a realistic set of parameters.

Validate their perspective without diminishing the reality of the situation.

Create an environment of safety for the patient and family to honestly talk with each other about their goals.

Tell me about your loved

one…

REVOCATION It’s always an option but what would

it likely look like? We can facilitate re-evaluation for

acute care or rehabilitation but we can’t guarantee provider acceptance.

Sometimes they have to go through the process to hear it from the potential receiving facility.

Sometimes revocation is the only choice because the family/patient is not ready to accept hospice care – regardless of available care.

Just because they “wish it wasn’t so” doesn’t mean we should fuel the fantasy.“Magical thinking” – if I don’t acknowledge it, it doesn’t exist…

la-la-la…I can’t hear you!

RESOURCES Healthcare providers Social workers Chaplains Specialized counseling

Community resources

Volunteer resources

QUESTIONS?Thank you!