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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.
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:
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.
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.
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:
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
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Sometimes it feels as if your bereavement will never end. You feel as if youd give anything to have the pain go away; to have the long lonely hours between nightfall and dawn pass without heartache. You are not the only grieving person who has longed for some measure of relief.In the novel, My Sisters Keeper, author Jodi Picoult wrote, There should be a statute of limitations on grief. A rule book that says it is all right to wake up crying, but only for a month. That after 42 days you will no longer turn with your heart racing, certain you have heard her call out your name.No such rule book exists. Grief counselors and therapists tell us that the length of time it takes anyone to grieve the loss of someone they held dear to them is dependent on the situation, how attached you were to the deceased, how they died, your age and gender. So many variables exist and theres absolutely no way to predict how long it will take for you to adapt to your loss.The Difference Between Normal and Complicated GriefResearch findings have led experts to come up with many differing categories of grief experience ranging from normal to complicated. Normal (or uncomplicated) grief has no timeline and encompasses a range of feelings and behaviors common after loss such as bodily distress, guilt, hostility, preoccupation with the image of the deceased, and the inability to function as one had before the loss. All are normal and present us with profound, and seemingly endless, challenges. Yet, Katherine Walsh says, Over the course of time, with average social supportmost individuals will gradually experience a diminishment of these feelings, behaviors, and sensations. So, how can you know if your bereavement is no longer within the range of normal? Ms. Walsh goes on to say, While there is no definitive time period by which this happens, if an individual or members of a family continue to experience distress intensely or for a prolonged periodor even unexpectedly years after a lossthey may benefit from treatment for complicated grief.A Useful Model for Assessment: Wordens Four Tasks of MourningThere are certain tasks that, when achieved during your bereavement, can successfully allow you to emerge on the other side of loss as a better, stronger, and more resilient individual. James Worden proposed these four tasks: To accept the reality of the loss To process the pain of grief To adjust to a world without the deceased To find an enduring connection with the deceased in the midst of embarking on a new life Instead of focusing on your bodily discomforts, feelings, and common behaviors, this model allows you to better see where you may be stuck or stalled in the adaptive process. Fortunately, Worden also gives us a list of indicators advising that "any one of these clues in and of itself may not be sufficient" for a diagnosis of complicated grief. "However," he continues, "any of theseshould be taken seriously, and the diagnosis of complicated grief should be considered when they appear."12 Clues... 12 InsightsWhile grief educators and theorists tell us that a diagnosis of complicated grief should not even be attempted until after the first anniversary of the death, if any one of the following symptomatic clues exists for longer than six months, you may want to consider grief counseling or grief therapy: You cannot speak of the deceased without experiencing intense and fresh grief long after the loss. A relatively minor event triggers an intense grief reaction. Your conversations with others are littered with references to loss. In other words, loss is an ever-present motif in your world view. You have issues related to your loved one's possessions. Keeping everything the same as before their death could indicate trouble just as tossing out everything right away can also be a clue to disordered mourning. (You also need to factor in your cultural and religious background) You have developed physical symptoms similar to those of the deceased before their death. Sometimes these symptoms recur annually, on the anniversary of the death, or on holidays. An increased susceptibility to illness or the development of a chronic physical complaint can also be an indicator. If you have made radical changes to your lifestyle, or excluded friends, family members, or even activities associated with the deceased, it may indicate unresolved grief. A long history of depression, often marked by guilt or low self-esteem, can reveal disordered mourning. The opposite is also true: a person experiencing a false sense of happiness or elation could be experiencing unresolved grief. A compulsion to imitate the deceased, in personality or behavior, can be a sign of complicated mourning. Having self-destructive impulses or exhibiting self-destructive behaviors can be significant. These can range from substance abuse, engaging in self-harm, developing eating disorders and suicidal tendencies. A sense of unexplained sadness occurring at a certain time each year (holidays, anniversaries, or birthdays) can also be a clue to unresolved grief. Developing a strong fear about dying, especially when it relates to the illness that took the life of your loved one, is an important clue. If you have avoided visiting your loved one's grave or if you are still unwilling to discuss the circumstances of their death, this could indicate complications in your bereavement. There are many types of complicated grief; it can be delayed, masked, exaggerated, or chronic. Self-diagnosis is without purpose. A year after the death, if you feel your grief symptoms worsening, we advise that you seek a referral from your family physician for professional grief counseling or therapy.Sources: Walsh, Katherine, Grief and Loss: Theories and Skills for the Helping Professions, 2nd Edition, 2012 Worden, James, Grief Counseling & Grief Therapy: A Handbook for the Mental Health Practitioner, 4th Edition, 2009
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
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
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