Communication and Coaching the Family

Differing Perspectives:

What the patient’s daughter was thinking –

Karen : It was to the point where, even though he was not in pain, they had increased the morphine from [every] 4 hours to 2 hours…I have a girlfriend who is a nurse and she was honest with me in telling me that as the morphine is increasing, the morphine is sort of killing him, too…[A]bout the morphine, they didn’t tell us what that was really doing to him. I didn’t relay what I knew about the morphine to any other member of the family.

What the patient’s doctor was thinking –

Dr. Wiseman : We’ve been there before and we know what to expect, and we know what’s normal, and by extension, we know what’s not normal… [so we are able to say] “If anything comes up, we’re going to treat him, so let us know if you have any questions or concerns, because there’s a lot we can do for your dad.”

 

  • These two quotations illustrate that families and clinicians often have very different perspectives of the same event, in this case the escalation of the morphine dose.
  • Excellent communication is required to avoid misunderstandings. Increasing the patient’s morphine for possible discomfort was a reasonable intervention and there is no indication that the intent was for a hastened death or that death was, in fact, hastened. Nonetheless, the daughter’s interpretation of the increase, reinforced by incorrect counsel from a nurse friend, was that death was hastened. Uncertainty regarding this haunted the daughter, following her father’s death. In an otherwise well-managed case, this lack of understanding suggests that communication regarding the dosage change was inadequate and that better coaching was needed.
  • Approaches to explaining the intent behind dose escalation and inquiring about family concerns appear in the following table.

 

Counseling About Palliative Care Interventions

Be clear regarding intent of intervention “We would like to increase his morphine dose, because we are concerned that he might be experiencing some pain (or shortness of breath).”
Inquire as to understanding of action and concerns “What is your understanding of (the proposed action)? Do you have any concerns?”
Address spoken (and commonly unspoken) concerns “We do not believe this action will hasten death, nor is this our intent.”

“Our goal is to enable him to die a natural and peaceful death, letting it unfold at his own pace.”

 

  • Coaching builds upon a foundation of mutual understanding developed through good communication. The clinician-coach facilitates new relationships between the family and the dying person, whose condition is changing rapidly and radically.
  • For example, when patients stop eating and drinking, families may interpret this to mean that their loved one is starving to death. Pointing out how different these changes are from starvation or “dying of thirst” can help alleviate these concerns (Dalal 2004).
  • Families wish to nurture their loved ones, even in their dying. While usual food may not be tolerated, the clinician may suggest that families help by using ice chips or mouth swabs for dry mouth.
  • When patients become non-verbal or unresponsive, many family members grieve the loss of two-way communication and may believe the patient is unconscious or in a coma, which may not be the case.
  • Counseling that hearing and touch are the last senses to go, and suggesting that their presence, their loving words, and their touch may comfort the dying encourages a continuing relationship.
  • Offer family and loved ones an opportunity for any parting words, such as asking for (and giving) forgiveness, expressing love and thanks, and bidding farewell (Byock 1997, 2004).
  • Additional coaching and support may best be provided by other members of the health care team.
  • The following presents a summary checklist of interventions to consider in caring for the actively dying patient.

 

Clinician Checklist for Actively Dying Patients

Evaluate Evaluate for and treat new symptoms:

  • Pain
  • Dyspnea
  • Dry mouth
  • Agitation
  • Retained respiratory secretions
Review Review current medications and therapies:

  • Switch essential medications to non-oral route
  • Stop unnecessary medications, procedures, monitoring (such as blood pressure, oxygen saturation, continuous cardiac monitoring)
Connect Connect with family:

  • engage
  • coach
  • console
Enlist Enlist additional support from:

  • Other clinicians, such as social workers, psychologists, chaplains
  • Friends, community, or spiritual leaders

 

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