Help me understand…

1. Help me understand… Anne Dare, LMSW adare@houstonhospice.org Anna Sallee, PhD, RN, CCRN asallee@houstonhospice.org

2. Help me understand So I can Help you understand

3. The patient is NOT dying because he is on hospice.

4. The patient is on hospice because he is dying.

5. Creating a relationship • Develop trust • Keep promises • Be open and flexible • Accept responsibility / accountability • Be sensitive • Choose your words carefully • Silence is golden

6. 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?

7. 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?

8. Understanding When were they told? Realistic expectations vs the Disney effect How? By whom? Previous experiences?

9. Patient Family

10. What other barriers exist? • Family dynamics • Who 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?

11. Family dynamics (cont.) • Is there a designated decision maker? • How is the decision maker coping? • Is there an “11th hour” relative creating dissent?

12. 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?

13. 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?

14. Provide the information patients and families need • Investigate their value belief systems • Are 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?

15. 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 facility • Pain management • Feeding / hydration • Resuscitation status

16. Evaluate disconnects among the patient and family members • Where 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.

17. Tell me about your loved one…

18. 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.

19. 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!

20. Resources • Healthcare providers • Social workers • Chaplains • Specialized counseling • Community resources • Volunteer resources

21. Questions? Thank you!