Betty R. Ferrell, PhD, RN

Disclosures

January 07, 2013

Bringing Up Palliative Care

The correct action is to explain to the family why palliative care is appropriate at this stage of Cynthia's illness. Palliative care is increasingly recognized as optimal care when applied concurrently with disease-focused care. None of the other responses would be appropriate.

Palliative care can be provided at the same time as chemotherapy, and avoidance of the family's concerns is not helpful or supportive, nor will it facilitate the palliative care consultation, which is ideal for patients with advanced disease and multiple symptoms. Palliative care will also offer greatly needed support to Cynthia's family.

In recent years, tremendous attention has been paid to better ways of communicating with patients and families about palliative care. Unfortunately, palliative care is often associated with imminent death, and this belief prevents patients from receiving timely services. Suggestions for a "goal-setting conference" to help patients and families to establish realistic goals for care are provided in the Table. Suggestions are given for useful communication that can assist families in understanding palliative care and aligning their values with the goals for their loved one.

Table. The Goal-Setting Conference

Before the Conference
• Review the patient's medical record. Know all medical issues: history, prognosis, treatment options.
• Coordinate medical opinions among consultant physicians.
• Decide what tests/treatments are medically appropriate (eg, likely to benefit the patient).
• Review advance care planning documents.
• Review/obtain family psychosocial information.
• Determine who will be present at the conference (patient, family members).
• Decide who should be present from the medical team.
• Clarify your goals for the meeting -- what decisions are you hoping to achieve?
10-Step Guide Helpful Language
1. Establish Proper Setting
• Private, comfortable; everyone seated. Turn off or forward pagers/phones.
 
2.Introductions
• Allow everyone to state their name and relationship to patient.
• Build a relationship: ask nonmedical question about patient.
"Can you tell me something about your father? What kind of person is he?"

 

3. Assess Patient/Family Understanding
• Encourage all present to respond.
• Ask for a description of changes in function over the course of illness/hospitalization.
"What have the doctors told you about your wife's condition?"
"What is your assessment of the current medical situation?"
4. Medical Review/Summary
• Summarize the "big picture" in a few sentences; use "dying" if appropriate; avoid an organ-by-organ medical review.
• Avoid jargon.
• Answer questions.
"I'm afraid I have some bad news. I wish things were different. Based on what you have told me, and what I see, I believe your mother is dying."
5. Silence/Reactions
• Respond to emotional reactions (have tissues available).
• Prepare for common reactions: acceptance, conflict/denial, grief/despair; respond empathically.
"This must be very hard."
"I can only imagine how scary/difficult/overwhelming this must be."
"You appear angry; can you tell me what is upsetting you?"
6. Discuss Prognosis
• Assess how much the patient and family want to know.
• Provide prognostic data using a range.
• Respond to emotion.
"Some people like to know every detail about their illness; others prefer a more general outline. What kind of person are you?"
"Although I can't give you an exact time, given your illness and condition, I believe you have (hours to days) (weeks to months). This is an average; some live longer, and some live shorter."
7. Assess Patient/Family Goals
Possible goals:
• Prolong life
• See a family milestone
• Improve function
• Relief of suffering
• Return home
• Stay in control
"What do you wish to accomplish?"
"What important tasks are left undone?"
"What is most important to you at this time?"
"Knowing that time is short, what goals do you have?"
"How do you picture your death?"
"Where do you want to be when you die?"
8. Present Broad Care Options
• Stress the priority of comfort, no matter the goal.
• Make a recommendation based on knowledge/experience.
"Given what you have told me about your mother and her goals, I recommend..."
"These decisions are very hard; if [patient's name] were sitting with us today, what do you think he/she would say?"
"How will the decision affect you and other family members?"
9. Translate Goals Into a Care Plan
• Review current and planned interventions; make recommendations to continue or stop on the basis of goals.
• Discuss do-not-resuscitate (DNR), hospice/home care, artificial nutrition/hydration, future hospitalizations.
• Summarize all decisions made.
• Confirm your continued availability regardless of decisions.
"You have told me your goals are ____. With this in mind, I do not recommend the use of artificial or heroic means to prolong your dying process. If you agree with this, I will write an order in the chart that when you are dying, no attempt to resuscitate you will be made; is this acceptable (ok)?"
"All dying patients lose interest in eating in the days to weeks leading up to death; this is the body's signal that death is coming."
"I am recommending that the (tube feedings, intravenous fluids) be discontinued (or not started) because these will not improve his/her living and may only prolong dying."
10. Document and Discuss
• Write a note: who was present, what decisions were made, follow-up plan.
• Discuss with team members (eg, consultants, nurse).
• Check your emotions.
Team debriefing: opportunity for teaching and reflection
Ask team members:
"How do you think the meeting went?"
"What went well? What could have gone more smoothly? What will you do differently in the future?"
Managing Conflict
• Listen and make empathic statements.
• Determine the source of conflict: for example, guilt, grief, culture, family, dysfunction, trust in the medical team.
• Clarify misconceptions.
• Explore values behind decisions.
• Set time-limited goals with specific benchmarks (eg, improved cognition, oxygenation, mobility).
When you need additional assistance or support, consider a palliative care consult.

Adapted from Weissman DE. The family goal setting conference and communication phrases near the end of life pocket cards from Medical College of Wisconsin. From the Center to Advance Palliative Care (https://www.capc.org/).Used with permission.

Web Resources

Center to Advance Palliative Care

End-of-Life Nursing Education Consortium (ELNEC)

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