2014 Jewish Home Lifecare Palliative Care Conference: It's Not the Place, It's the Practice

1. What Does Comfort Look Like in
the Nursing Home Setting?
Geriatric Palliative Care Conference
Jewish Home Lifecare - November 12, 2013
Ann Wyatt, Coordinator, Palliative Care Project
Alzheimer’s Association, NYC chapter

2. Palliative Care for Advanced Dementia:
Training and Implementation in NYC
• Based on the “Comfort First” ™model
developed at the Beatitudes Campus in
Phoenix, Arizona and their partner, Hospice of
the Valley
• Three NYC nursing homes; Cobble Hill;
Isabella; Jewish Home, Manhattan
• Three hospice programs: Calvary; MJHS;
VNSNY
• 30-month project (7/1/12 through 12/31/14)

3. Training
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For leadership
Visit to the Beatitudes Campus
For unit staff, supervisors
Weekly meetings on pilot units
Phone consultation; webinars; on-unit
consultations; other

4. Comfort First™ refers to both specific care
practices and the process by which these
practices are implemented
It is about listening, to residents, to families, to
staff at all levels, all disciplines

5. Comfort Care Practices
• Pain and Distress identified and treated
• What kinds of pain are there??
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Injuries
Old injuries (i.e., old broken bones)
Arthritis
Backache
Wounds
Constipation
Headache
Cramps
Boredom
Loneliness
Despair

6. Talking About Pain
• Do you have pain?
• Older adults describe pain as ‘discomfort’ or
‘hurting’ or ‘aching’ or ‘sore.’
• Discomfort/pain from emotional distress,
constipation, cold, hunger, and fatigue.

7. Pain and Aging
• Pain is reported in 25%--50% of older persons
living in the community.
• Pain is reported in 45%--80% of nursing home
residents.
• Pain is part of normal aging, but it is not
normal

8. Measuring Pain
Hospitals and nursing homes commonly ask us
to indicate how much pain we have by asking us
to rate our pain on a scale of 1 to 10, or by
pointing to a chart with faces showing emotions
from happy to tearful.

9. What about Pain and the Person with
Dementia?
• Pain DOES negatively affect cognitive function.
• Increased affective pain from differently managing
everyday activities related to the diseased state.
• There is no evidence that dementia results in the loss of
ability to feel pain.
• Tolerance to acute pain possibly increases but pain
threshold does not change—people with dementia sense
even low levels of pain.
• Absence of vital changes in people with dementia
experiencing acute pain does not mean absence of pain.
• Cognitive impairment may alter response to pain therapies--people with dementia may require more analgesic use.

10. What does Pain Look Like for the
Person with Dementia?
Don’t assume that someone cannot explain or
rate their pain. Always ask them directly if they
have pain or if they are sore, ache, or hurt.
However, when the person can no longer
verbally express their pain but they demonstrate
obvious distress, explore further the cause and
manifestation of their pain. Always rule out
other forms of discomfort, such as a soiled brief
or an acute medical condition.

11. Pain, Discomfort and Distress
Over time, people with dementia become
increasingly unable to distinguish what is
causing them to feel uncomfortable.
This means that it is always important to pay
attention any time they are uncomfortable, to
take discomfort seriously, and try as hard as
possible to get to the root of the discomfort.

12. “Rejection of Care”
It is very common for people with dementia to
convey/exhibit signs of distress when care is
being provided to them. In the nursing home
setting, this is known as ‘rejection of care.” In
reality, usually when someone with dementia is
‘rejecting’ care, they are really saying, ‘you are
upsetting me’ in some way. By rejecting your
effort, they are, in fact, protecting themselves,
the only way they know how.

13. Rejection of Care (continued)
• Sometimes people ‘reject’ care because the caregiver
is going too fast, and they don’t understand what is
happening, which upsets them.
• Sometimes going slow, slower, slow helps.
• Sometimes, showing them what you are asking them
to do helps.
• Sometimes rejection of care happens because the
person is hurting in some way.
• Sometimes they aren’t fully awake, or they are feeling
a little tense, and need to start the day in a more
relaxed way.

14. Rejection of Care (continued)
However, rejection of care ALWAYS means the
person is feeling distressed, and it sometimes
means they are in physical pain. Therefore it is
essential that every effort be made to find a way
to provide the care that is not distressing. As you
know, the first step is to simply stop, and come
back later (if slowing down doesn’t help).

15. When the person can no longer report
their pain….
It can be very helpful to use a valid and reliable
pain behavioral assessment tool, such as the
PAINAD. Document and communicate the
findings, and work with your team members
(RN, family members, physician) to address the
behaviors as a manifestation of pain. When in
doubt, assume pain is present! Sometimes,
when no other reason for distress can be found,
a trial dose of pain medication can be helpful.

16. PAINAD Form
• Breathing: periods of hyperventilation, noisy,
labored breathing
• Negative vocalization: crying, loud moaning or
groaning, wails or laments
• Facial expression: very distressed look on face, ay
squeeze eyes shut
• Body language: the person holds themselves
rigidly, or pulls or pushes, hits, kicks or grabs
others
• Consolability: the person is visibly upset, and
cannot be soothed or comforted

17. What Brings Comfort?
It is as important to know what brings comfort
as it is to know what causes distress:
Peanut butter sandwiches, chocolate, scrambled
eggs, back rubs, the color pink, Frank Sinatra, a
walk down the hall, holding hands, pictures of
cats, listening to a Yankee game, pictures of
dogs, holding a baby doll, gospel music, bible
reading, sitting on a bench outside, a chocolate
lollipop

18. Pain Medications
• Sometimes helpful to offer pain medications
sufficiently in advance of providing care so
that it is not painful for the person
• Do not rely on the person to tell you when
they are in pain (don’t depend on PRN)
• Sometimes pain meds work for awhile, then
become less effective, so a change is needed

19. Other Comfort Care Practices
• Sleep, Rest, Mobility and Falls Prevention
addressed
• Bathing and ADL made comfortable
• Diets liberalized and comforting foods always
available
• Small group and one-on-one activities and
interactions
• Calm and pleasant environment (elimination
of sundowning)

20. Care Planning &Behavior as Communication
Using the MDS 3.0 to Improve Care
• Physical behavioral symptoms directed toward
others
• Verbal behavioral symptoms directed toward
others
• Other behavioral symptoms not directed
toward others
• Rejection of Care

21. How do we improve care practices?
by Being Good Detectives…..
• We always start by asking, what is the resident
trying to tell us, what might be prompting this
behavior?
• Examples

22. Knowing the Resident

26. What information do we have, what
information do we need, what information
do we collect….

27. And, who needs to know, and how
do they find out?

28. MDS 3.0—Section F
Preferences for Customary Routine and Activities
• Who collects this information?
• How soon after the person comes to live with
you?
• Where is the information kept?
• What do you do with the information?

29. What Do We Need?
• Ongoing Dementia Training
• Ongoing Dementia QAPI
• Dementia training and orientation for ALL staff
on unit
• Regular (weekly) Interdisciplinary Meetings
• Care Planning that includes CNAs
• Care Plans that include comfort (and trigger)
details

30. Resources
• Encouraging Comfort Care (available from
alznyc.org website, in English and Spanish)
• ADvancing Care, for nursing home staff. Anyone can
subscribe for free online: www.alznyc.org/LTC
• Care ADvocate, for family and friends of those living
in nursing homes. Also available in Spanish. Subscribe for
free online: www.alznyc.org/careadvocate