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Table 4 Protocol prompts

From: Community Tele-pal: A community-developed, culturally based palliative care tele-consult randomized controlled trial for African American and White Rural southern elders with a life-limiting illness

African American

White

Distrust is ever present. Recognize and respect. Work to establish trust.

 

White coat, tele-health: Wear white coat

Tele-health: Acknowledge not same as face to face

Address patient/family

 By last name or title ONLY

 

  1. Introduce self, then invite patient/family to introduce self, hospital staff and CRC last

Rapport building

 Get to know patient, begin establishing rapport

 Take additional time to get to know family

 

 Learn specifics about family and talk about it

 

 Discuss something local

 

Family care/social history

 Recognize that family will be there for patient and care for them at home. Start with that assumption.

 

Illness understanding/prognosis discussion

 1. Ask patient/family if want to know prognosis;

1. Sensitively determine if patient/family want to know about prognosis.

 2. Never be blunt.

2. Honor their decision (i.e., if do not want to know, do not discuss and vice versa).

 3. Never tell patient they are dying.

3. Be a part of their journey.

 4. If family asks prognosis, never give date or time, only range.

 

 5. Explain what’s happening in the body very simply (no medical terms).

 

 6. Offer opportunity for patient and family to ask questions. If family does not understand, explain in different way

 

 7. If patient/family is religious, physician can say, “I can see that you are a spiritual person, we are doing the best that we can and it’s in God’s hands.”

 

 8. Always say: it’s in God’s hands/God decides. If physician not comfortable saying, “God”, say, “it’s in the hands of a higher power.”

 

 9. If physician is comfortable, ask if you can pray with the patient/family.

 

Medications/symptoms

 1. Explain why pain meds needed, especially morphine dosing

 2. If concern about lack of consciousness raised, explain balance between pain free and being asleep/unconscious

 3. If concern about morphine dose change, explain flexible dosing

 4. If concern about addiction is raised, explain addiction not problem

 5. If fear of overdosing is raised (with potential to enhance death), address concern and ease fear.

 6. Explain simply; no medical language.

Goals of care, treatment preferences and ACP

 May be confused between: AD, DNR, Power of Atty.

 Recognize: Care instructions given verbally to family

1. Ask if they have any documents of wishes.

  1. If patient cannot communicate: Ask if shared instructions w family (and who)

2. Ask if have been asked to complete documents. Clarify if questions

  2. Ask family what care patient wanted

3. If has document, ask: What does it specify? Have they changed? Has hospital followed them?

 

4. If no AD, ask if know what care pt. wanted

 

5. If not AD, ask if want to complete one.

Role of religion and church

 Recognize importance of pastors, especially in discussing prognosis. Invite pastor to next meeting if discussing prognosis.

 Recognize importance of religion, source of comfort, knowledge, a guide for all things

Recognize church members are a source of support. If support needed, ask if a church member can assist; ask name of church member and discuss how they can provide support.

Financial vulnerability

 Recognize may experience substantial financial difficulties, with harsh/challenging realities

 

Death and dying

 Recognize death is not discussed in church. Approach possibility of death with caution.

 

Hospice

 1. Never say ‘hospice’ and do not raise it UNLESS the patient/caregiver raises it or expresses concern about burden of care OR asks about hospice.

1. Assess how patient and family feel about hospice but do not use the word, “hospice.” Use “home health.”

 2. Ask which family members are helping to take care of patient (and how). If it is the kind of care home hospice provides, explain that this is the type of care that home health provides.

2. Whatever their response, acknowledge and respect their feelings/attitudes.

 3. Ask if there are any specific concerns (e.g. cleaning a port, bathing a patient with an open wound) about the family providing care, and discuss until all concerns are alleviated.

3. If open to it, talk about this is a helpful way to take care of the family at home.

 4. Emphasize that home health NOT there to take over; the family is in charge.

4. Make sure to emphasize that this is an offer of help and assistance.

 5. If open to it, talk about how this is a helpful way to take care of the family at home.

 

 6. Ask if have any concerns about this kind of home help. Address concerns

 

 7. Acknowledge and respect their feelings/attitudes.

 

 8. If patient/family wants home health/hospice, ask if want you to make referral.

 

 9. Stress that all decisions are up to the patient/family. You’re there only to help.

 

Nursing homes

 1. If patient in nursing home, or family/patient raises issue, discuss nursing home referral. Do not raise if they do not

1. If patient is in nursing home, help family deal with guilt

 2. If loved one is going to nursing home, provide support to family.

 
  1. AD advance directive, DNR do not resuscitate