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

Author

VITAS HEALTHCARE SWFL

For more information about the author, click to view their website: VITAS Healthcare

Posted on

Nov 07, 2024

Book/Edition

Florida - Southwest

share-this
Share This

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

Other Articles You May Like

Medicare Minute: Medicare for Federal Employees and Retirees

Whether to enroll in Part B or use FEHB as primary coverage is a personal decision, based on your individual circumstances. You should look at the costs and benefits of each insurance plan and make the choice thats best for you.Federal Employee Health Benefits (FEHB)Cover current and retired government employeesAdministered by the U.S. Office of Personnel Management (OPM)Can be:Health Maintenance Organizations (HMOs): Have networks of providers that you usually must see. Out of network costs may be lower.Fee-for-service (FFS) plans: Allow you to see any medical provider, but you may have higher costs.When you become Medicare-eligible, you have a few options:Keep FEHB and turn down Medicare.Even if you have FEHB retiree coverage, it will continue to provide you with primary coverage if you dont enroll in Medicare. In this way, FEHB retiree coverage is different from most other retiree coverage.If you choose this option, consider turning down Medicare Part B but still enrolling in Part A. Part A is usually premium-free, meaning that you can have this additional coverage at no cost to you.Keep FEHB and enroll in Medicare.The two will work together to cover your health care costs, but you will owe premiums for both.Disenroll from FEHB and enroll in Medicare.You might not be able to enroll in FEHB again in the future if you change your mind.For a full list of questions to ask yourself when choosing the option that is best for you and more on identifying billing errors download this helpful handout by the Medicare Rights Center.Who to contact for more information: Contact your State Health Insurance Assistance Program (SHIP) if you want to discuss your Medicare enrollment options with a Medicare counselor. Contact your Senior Medicare Patrol (SMP) if you may have experienced Medicare fraud, errors, or abuse. In Southwest Florida it is 866-413-5337 or email shineinfo@aaaswfl.org. Contact the U.S. Office of Personnel Management (OPM) if youre a federal employee or retiree and want to learn more about FEHB. You can call 317-212-0454 or visit www.opm.gov/healthcare-insurance. Contact United States Postal Service (USPS) if you are a USPS employee, retiree, or eligible family member and need more information on PSHB. Current employees can visit www.liteblue.usps.gov and retirees can visit www.keepingposted.org.The Medicare Rights Center is the author of portions of the content in these materials but is not responsible for any content not authored by the Medicare Rights Center. This document was supported, in part, by grant numbers 90SATC0002 and 90MPRC0002 from the Administration for Community Living (ACL), Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official Administration for Community Living policy. [April 2024]

Celebrating Older Americans Month: Powered by Connection

Established in 1963, Older Americans Month (OAM) is celebrated every May. Led by a federal agency, the Administration for Community Living (ACL), OAM is a time to recognize older Americans contributions, highlight aging trends, and reaffirm commitments to serving the older adults in our communities.This years theme, Powered by Connection, focuses on the profound impact that meaningful connections have on the well-being and health of older adults a relationship underscored by the U.S. Surgeon Generals Advisory on the Healing Effects of Social Connection and Community.Its not just about having someone to chat with, its about the transformative potential of community engagement in enhancing mental, physical, and emotional well-being. By recognizing and nurturing the role that connectedness plays, we can mitigate issues like loneliness, ultimately promoting healthy aging for more Americans.How can community groups, businesses, and organizations mark OAM?Spread the word about the mental, physical, and emotional health benefits of social connection through professional and personal networks.Encourage social media followers to share their thoughts and stories of connection using hashtag #PoweredByConnection to inspire and uplift.Promote opportunities to engage, like cultural activities, recreational programs, and interactive virtual events.Connect older adults with local services, such as counseling, that can help them overcome obstacles to meaningful relationships and access to support systems.Host connection-centric events or programs where older adults can serve as mentors to peers, younger adults, or youths.What can individuals do to connect?Invite more connection into your life by finding a new passion, joining a social club, taking a class, or trying new activities in your community.Stay engaged in your community by giving back through volunteering, working, teaching, or mentoring.Invest time with people to build new relationships and discover deeper connections with your family, friends, colleagues, or neighbors.For free local events and services, visit our event calendar. For more information, visit the official OAM website and follow ACL on X, Facebook, and LinkedIn. Join the conversation on social media using the hashtag #OlderAmericansMonth.

Medicare Minute: Preparing for Future Health Care Needs

Many people assume that their family members would automatically be able to make decisions about medical treatments if they were to become incapacitated. However, rules vary greatly from state to state:Your family may have to go through a costly and time-consuming court process to get the legal right to make medical decisions for you.Your family members may disagree on who should make medical decisions on your behalf, which could lead to legal disputes.Someone unfamiliar with your preferences may be placed in charge of your treatment choices.Its important to have a plan ahead of time to avoid disagreements around treatment issues and to ensure your wishes are honored if you are incapacitated. Advance directives, living wills, health care proxies, and powers of attorney can help ensure that decisions made on your behalf meet your needs and preferences.Important documents to have include:Health care proxy Names someone you trust as your proxy, or your  agent, to express your wishes and make health care decisions for you if youre unable to speak for yourself.Living will A written record of the type of medical care you would want in specified situations.Advance directive Often refers to a combination including both a living will and health care proxy documents.Power of attorney Names someone you trust as your agent to make property, financial, and other legal decisions on your behalf.For detailed tips on preparing these documents download the Preparing for Future Health Care Needs handout by the Medicare Rights Center. To understand how Medicare covers hospice and for answers to other Medicare coverage questions, contact your State Health Insurance Assistance Program (SHIP). You can visit www.shiphelp.org or call your local SHINE Medicare Counselors at 1-866-413-5337. 

Local Services By This Author

VITAS Healthcare

Support Groups & Services 4980 Tamiami Trail North, Naples, Florida, 34103

Hospice Care in Southwest Florida: Collier, Lee, Glades, and Hendry countyThe VITAS Healthcare team visits patients wherever they call home, including but not limited to: private homes, senior living communities, and long term care facilities in Southwest Florida. We have offices located in Collier and Lee County and an Inpatient Unit in Naples. Coming soon, VITAS Inpatient Unit in Lee County.VITAS provides 24/7 support whenever our patients and families need it.At VITAS, we prioritize our patients and their families above all else. By concentrating on enhancing quality of life, managing symptoms and pain effectively, and minimizing 911 calls and hospital readmissions, we ensure our patients' comfort and well-being. VITAS distinguishes itself from traditional hospice providers through a personalized approach to care planning, transparent medication management, and a comprehensive range of specialized modalities tailored to meet diverse patient needs. These include physical therapy, occupational therapy, speech therapy, respiratory therapy, wound care, palliative oncology therapy, palliative dialysis, and more. Office Locations:Fort Myers VITAS Hospice Office12751 Westlinks Dr. Fort Myers, 33913 Vitas Inpatient Unit at Solaris Healthcare Imperial900 Imperial Golf Course Blvd. Naples, 34110 Naples VITAS Hospice Office4980 N. Tamiami Trail, Suite 102, Naples 34103 Our Care ServicesAt VITAS we care for patients with an interdisciplinary team comprising a nurse, physician, aide, social worker and chaplain. Our teams design personalized care plans to ensure comfort, dignity and quality of life.      Hospice Care at Home      Condition-Specific Care      24/7 Telecare      Intensive Comfort Care      Veterans Care      Inpatient Hospice Care      Music Therapy      Paw Pals Pet Visits      Grief and Bereavement Support

VITAS Healthcare

Palliative Care 4980 Tamiami Trail North, Naples, Florida, 34103

Hospice Care in Southwest Florida: Collier, Lee, Glades, and Hendry countyThe VITAS Healthcare team visits patients wherever they call home, including but not limited to: private homes, senior living communities, and long term care facilities in Southwest Florida. We have offices located in Collier and Lee County and an Inpatient Unit in Naples. Coming soon, VITAS Inpatient Unit in Lee County.VITAS provides 24/7 support whenever our patients and families need it.At VITAS, we prioritize our patients and their families above all else. By concentrating on enhancing quality of life, managing symptoms and pain effectively, and minimizing 911 calls and hospital readmissions, we ensure our patients' comfort and well-being. VITAS distinguishes itself from traditional hospice providers through a personalized approach to care planning, transparent medication management, and a comprehensive range of specialized modalities tailored to meet diverse patient needs. These include physical therapy, occupational therapy, speech therapy, respiratory therapy, wound care, palliative oncology therapy, palliative dialysis, and more.Office Locations:Fort Myers VITAS Hospice Office12751 Westlinks Dr. Fort Myers, 33913 Vitas Inpatient Unit at Solaris Healthcare Imperial900 Imperial Golf Course Blvd. Naples, 34110 Naples VITAS Hospice Office4980 N Tamiami Trail, Suite 102, Naples 34103Our Care ServicesAt VITAS we care for patients with an interdisciplinary team comprising a nurse, physician, aide, social worker and chaplain. Our teams design personalized care plans to ensure comfort, dignity and quality of life.      Hospice Care at Home      Condition-Specific Care      24/7 Telecare      Intensive Comfort Care      Veterans Care      Inpatient Hospice Care      Music Therapy      Paw Pals Pet Visits      Grief and Bereavement Support 

VITAS Healthcare

Hospice 4980 Tamiami Trail North, Naples, Florida, 34103

Hospice Care in Southwest Florida: Collier, Lee, Glades, and Hendry countyThe VITAS Healthcare team visits patients wherever they call home, including but not limited to: private homes, senior living communities, and long term care facilities in Southwest Florida. We have offices located in Collier and Lee County and an Inpatient Unit in Naples. Coming soon, VITAS Inpatient Unit in Lee County.VITAS provides 24/7 support whenever our patients and families need it.At VITAS, we prioritize our patients and their families above all else. By concentrating on enhancing quality of life, managing symptoms and pain effectively, and minimizing 911 calls and hospital readmissions, we ensure our patients' comfort and well-being. VITAS distinguishes itself from traditional hospice providers through a personalized approach to care planning, transparent medication management, and a comprehensive range of specialized modalities tailored to meet diverse patient needs. These include physical therapy, occupational therapy, speech therapy, respiratory therapy, wound care, palliative oncology therapy, palliative dialysis, and more.Office Locations:Fort Myers VITAS Hospice Office12751 Westlinks Dr. Fort Myers, 33913 Vitas Inpatient Unit at Solaris Healthcare Imperial900 Imperial Golf Course Blvd. Naples, 34110 Naples VITAS Hospice Office4980 N Tamiami Trail, Suite 102, Naples 34103Our Care ServicesAt VITAS we care for patients with an interdisciplinary team comprising a nurse, physician, aide, social worker and chaplain. Our teams design personalized care plans to ensure comfort, dignity and quality of life.      Hospice Care at Home      Condition-Specific Care      24/7 Telecare      Intensive Comfort Care      Veterans Care      Inpatient Hospice Care      Music Therapy      Paw Pals Pet Visits      Grief and Bereavement Support