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.
