Addressing 'Total Pain' in End-of-Life Care to Enhance Quality of Life

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