Addressing 'Total Pain' in End-of-Life Care to Enhance Quality of Life - VITAS Healthcare
VITAS Healthcare - Pittsburgh
For more information about the author, click to view their website: https://www.vitas.com/locations-search/pittsburgh/cranberry-township-hospice-office
Mar 24, 2025
Pennsylvania - Greater Pittsburgh Area
By Dr. Lauren Loftis, Regional Medical Director, VITAS
Healthcare
Pain and discomfort can be under-recognized and
under-treated in patients with serious illness. At the end of life, 81% of
patients cite being pain free as an important factor in dying a “good
death.” 1 Along with the physiological pain associated
with a patient’s terminal illness, anxiety and depression may contribute to
their “total pain.” Social, emotional, and spiritual dimensions of total pain
increase the patient’s suffering beyond their physical discomfort.
A holistic approach to targeting pain at the end of life
enables physicians to provide relief and comfort care that improve the
patient’s quality of life.
To illustrate, a patient I’ll call Bob Jones is a
65-year-old male with stage IV colon cancer and extensive metastases to the
bone, liver, and brain. Mr. Jones’ wife is his caretaker, and he is estranged
from his son who lives out of state. His son does not accept his terminal
diagnosis. Despite surgery, chemotherapy, and radiation, Mr. Jones’ disease has
progressed.
As I meet Mr. Jones for an initial hospice encounter, I ask
open-ended questions, especially what matters most to him at this point in his
disease progression, to determine his goals of care. I learn he is a Vietnam
Veteran with signs of undiagnosed PTSD. He is constipated and
desires to return home and spend time with his wife. He wishes to go to Hawaii
but fears that this can no longer happen. His son does not want him to take
morphine.
Looking at the “Total” Picture: Optimizing Patient
Comfort
As physicians, when we ask about pain, we keep in mind that
it is defined by the patient. Hospice clinicians manage pain based on the needs
and expectations of the patient and family, not our own.
Getting an accurate measure of the pain level is necessary
for appropriate treatment. The patient may be reluctant to report pain for fear
of being a “complainer” or a desire to avoid opioids. Asking open-ended
questions may help you gauge pain more effectively:
- How
severe is the pain?
- Where
is the pain located?
- What
are you taking for the pain? How is that working for you?
- How is
the pain affecting your ability to function daily, such as bathing,
dressing, and the ability to get up and walk?
- Is the
pain impacting your ability to fall or stay asleep?
- How is
the pain impacting your mood?
- Is the
pain impacting your ability to socialize or spend time with the ones you
love?
Other indicators of pain and suffering can be viewed or
discussed. Dryness of the eyes can lead to painful keratitis as well as
infections. Patients on long-term oxygen therapy may have skin breaks around
the nares, dryness, and episodes of epistaxis, which can be distressing.
Patients who have been using noninvasive modes of ventilation may have pressure
ulcers at the nasal bridge and cheeks. Pooling oral secretions and lack of oral
care can lead to oral ulcers and dental issues.
Signs of malnutrition include temporal wasting, supra,
infra-clavicular wasting, scaphoid abdomen, and skin dryness. Loss of muscle
mass can create an increased risk of skin breakdown. Dehydration signs include
dryness of mucosal surfaces, loss of skin turgor, and dry skin. Abdominal
fullness can point towards constipation or urinary retention, which can cause
significant distress to the patient. Lastly, a hygiene assessment and
well-being focused on maintaining the patient's dignity are essential.
For Mr. Jones, our VITAS team contacted his son to discuss
his hesitation to provide pain medication for his father. Using a calm and
thoughtful approach, we explored where his beliefs came from and if they were
simply based on a common
misconception about the use of morphine in hospice patients.
Mr. Jones had agreed to hospice services “to get out of this
place,” meaning the hospital, and go home to sleep in his own bed, with his
wife and dogs nearby, his stated goals for end of life. He received Continuous
Care to help manage his symptoms at home. The VITAS hospice
physician evaluated him at admission and after transport to his home.
Clinicians profiled his medications, which we arranged to be delivered to the
home along with a bedside
commode, walker, oxygen, and briefs.
Managing Both Physical and Nonphysical Pain
Once in hospice, the interdisciplinary
team—a team manager, primary nurse, hospice aide, physician, chaplain,
social worker, team physician, and volunteer—collaborates to address the
patient’s total pain beyond opioids alone. VITAS also has an in-house pharmacy
team with Pharm Ds on call to assist with symptom management consultations,
medication selection, and dose conversions.
After Mr. Jones arrived home, the home health aide gave Mr.
Jones the first true bath he had had in weeks. The team addressed his
constipation. We consulted our VITAS
social worker and chaplain to
help him and his family. The VITAS Pharm D assisted with a methadone titration
regimen and pharmacologic selection.
With these interventions, Mr. Jones “felt so much better he
couldn’t believe it” and “wished he’d called us months ago.” He was able to
live at home for nearly six months after his hospitalization. His course of
symptom management allowed him to make meaningful memories with his family. He
also achieved resolution to his estrangement with his son, which was not only
significant to him but also the rest of the family, even beyond Mr. Jones’
death.
Focusing on Quality of Life With Compassionate Care
A total pain approach to comfort care minimizes any
medication side effects—even those not related to the terminal illness—while
enhancing the patient’s:
- Functional
ability
- Physical
well-being
- Psychological
well-being
- Spiritual
well-being
This includes empowering the patient to participate in
decision-making, which helps them retain dignity and a sense of control.
The emphasis of comfort care is to improve the patient’s
quality of life in their remaining months, weeks, and days. The outcomes of the
hospice interdisciplinary care team’s efforts are evident—in the photos we
receive and the kind words of family members and even patients themselves who
entrusted their care to us. Like Mr. Jones, many tell us: “We wish we knew
about hospice sooner.”
Questions about total
pain management? Ready to refer
a patient? Contact your VITAS representative.
1Meier, Emily, et al. (2016). “Defining a Good
Death (Successful Dying): Literature Review and a Call for Research and Public
Dialogue.” American Journal of Geriatric Psychiatry. Retrieved Sept. 16, 2024
- To view the original version of this article visit www.vitas.com/for-healthcare-professionals/making-the-rounds/2024/october/compassionate-pain-management
- Seniors Blue Book was not involved in the creation of this content.
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