Advance Directives: Sarah’s Story

By Faith Protsman, MD, Regional Medical Director, VITAS HealthcareTwo recent studies highlight how sepsis impact often extends well beyond the acute event that led to a patients hospitalization. The studies emphasize two particular points that should inform physicians and clinicians as they consider referring these patients to specialized care: Medicare patient data gathered between 2012-2017 shows that sepsis patients face considerably poorer health outcomes following hospital discharge when compared to non-sepsis patients, including elevated risk for death and increased use of advanced healthcare services. Sepsis survivors exhibit strong indicators of persistent inflammation and immunosuppression for up to a year after hospital discharge, increasing their risk of readmission or death. Both studies indicate a significantly elevated risk of death among sepsis patients after they have been discharged and ostensibly cured. Of course, sepsis patientsparticularly those of the Medicare cohort, who are largely of advanced agerarely leave the hospital in better condition than they entered.The Yende study, in particular, shows that neuroendocrine and inflammatory responses to sepsis can continue long after the patient survives a septic episode. For patients with advanced or chronic diseasesas was the case with nearly 78% of participants in the studythese biomarkers are associated with decline.Post-sepsis Discharge: A Critical JunctureIn many cases, these individuals life expectancies upon discharge will be less than six months. This is a critical juncture: While comfort-focused hospice care could provide an ideal source of support for the eligible patient, their family, and their caregiver(s), most sepsis patients are simply sent home without even a discussion about palliative end-of-life care and its benefits.Frankly, such an oversight is a disservice to everyone involved. The sepsis patient is left with physical and/or cognitive dysfunction, often without significant options for symptom management. Their partner or family will either need to assume caregiving duties or turn to costly private services. And the physician and hospital staff will likely see the patient again following another acute event, a readmission that impacts performance scores, strains resources, and unnecessarily fills beds.By no means do I intend to lay the blame for these unfortunate circumstances on physicians. Timely hospice referrals require ongoing education about end-of-life care, and open, ongoing communication between hospice providers and referral sources.More Help: How to Talk About Hospice Care >Those of us in hospice are working hard to bridge the gap, but even as our healthcare system transitions to a value-based model, the mentality of fee-for-service still permeates our nations acute-care facilities, and many hospitalists see a discharge home as a success.Hospice: A New Way Of Judging SuccessIn hospice, we judge our successes on the patients quality of life and the fulfillment of their goals and wishes near lifes end. Usually, that means going home with 24/7 support from an interdisciplinary hospice team. Whether home is a traditional residence, an assisted living facility, or nursing home, the hospice team will assist caregivers (and/or facility staff) with direct clinical care and education, integrative services, bereavement support, and delivery of medication, equipment, and supplies.In other cases, improving quality of life means remaining in a general inpatient setting with hospice support, taking the burden off hospital staff until the patient is able to transition home or until the patient dies. Hospice offers complex modalities in any setting, so patients who would otherwise be confined to an ICU can usually return home to be among loved ones.With support from hospice, a sepsis patient and their family are more likely to report higher satisfaction of care and greater quality of life. The patients emotional and spiritual needs can be met alongside their physical needs, thanks to care from chaplains, social workers, music and massage therapists, and other integrative specialists. Finally, the patient is more likely to die at home, surrounded by loved ones, rather than in the hospital.Because sepsis is most common in patients with advanced or chronic diseases that indicate hospice eligibility, acute incidences of sepsis should always trigger a hospice eligibility assessment. We owe it to our patients, their loved ones, and our colleagues in healthcare, all of whom can benefit from the support that timely end-of-life care offers. 

By Dr. Lauren Loftis, Regional Medical Director, VITAS HealthcarePain 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 patients terminal illness, anxiety and depression may contribute to their total pain. Social, emotional, and spiritual dimensions of total pain increase the patients 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 patients quality of life.To illustrate, a patient Ill 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 ComfortAs 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 PainOnce in hospice, the interdisciplinary teama team manager, primary nurse, hospice aide, physician, chaplain, social worker, team physician, and volunteercollaborates to address the patients 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 couldnt believe it and wished hed 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 CareA total pain approach to comfort care minimizes any medication side effectseven those not related to the terminal illnesswhile enhancing the patients: 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 patients quality of life in their remaining months, weeks, and days. The outcomes of the hospice interdisciplinary care teams efforts are evidentin 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

By Henri Nammour, MD, Regional Medical Director, VITAS HealthcareWinter has arrived, and with winter comes lower temperatures. The increased cold presents particular danger to people with advanced lung disease (ALD) in general and chronic obstructive pulmonary disease (COPD) in particular, leading to increased exacerbation frequency and worsening of symptoms.With the chronic and life-limiting nature of these conditions, patients with ALD and COPD can benefit immensely from timely palliative care and hospice referral and involvement.Decreased Temperatures, Increased ExacerbationsEvidence in the literature shows the seasonality of COPD exacerbations. A retrospective analysis of the large-scale TIOSPIR trial found marked seasonal variation in COPD exacerbations, hospitalization, and mortality. The authors note that in the northern hemisphere, the peak for exacerbations is early winter, followed by the peak for hospitalizations in midwinter.15 An analysis of numerous COPD-related studies worldwide saw a pattern of clear seasonality in COPD [primary care] consultations and increased hospital admissions for COPD exacerbations.8As the temperature drops, the rate of COPD exacerbations increases. A study comparing meteorological variables with health system registry data showed an inverse correlation between temperature and COPD exacerbation rate.14A Prevalent But Underdiagnosed DiseaseIn 2020, 12.5 million people reported a diagnosis of COPD, chronic bronchitis, or emphysema.6 COPD is the fifth disease-related cause of death.5 In 2019, there were close to 536,000 COPD hospitalizations and 1,320,000 COPD emergency department visits.4These are staggering numbers, but COPD remains a disease with under-reported prevalence and potential underdiagnosis; according to the CDC, more than 50% of adults with low pulmonary function were not aware that they had COPD.2With early diagnosis and proper use of advance care planning (ACP) and goals of care (GOC) discussion, the opportunity to involve palliative care early on in the disease course and hospice at the appropriate time can make a tremendous difference in ALD/COPD patients and their families and caregivers lives.An Opportunity for ImprovementHospice is underutilized in ALD/COPD patients. While more COPD patients are using hospice and palliative care, they are a small minority of this large patient population. A significant proportion of patients with COPD are not hospice users; consequently, they often receive a disproportionate amount of aggressive interventions at the end of life.13While there has been a general trend of increased use of palliative care and hospice among COPD patients in the past two decades, only a minority of patients with COPD die at home or in hospice. Early PC [palliative care] involvement in patients with severe COPD may improve the end-of-life experience and increase hospice use.16 A greater proportion of decedents from pulmonary disease die in the hospital than individuals dying of cancer, cardiovascular disease, cerebrovascular disease, or dementia.7For ALD/COPD patients, discussion of ACP and GOC are typically provided too late, if at all. They were less likely to have advance directives in place, leading to higher and more aggressive healthcare utilization near end-of-life that offers little benefit in the face of advanced disease.11 What Patients WantPatients with advanced respiratory illness want to learn more about end-of-life care. However, patients report feeling frustrated by poor communication and discussion surrounding ACP, and often feel that important therapeutic and symptomatic goals are not discussed.3Notably and concerningly, fewer than one-third of patients with COPD and their caregivers had even heard of palliative care. Only a minority of these patients received formal palliative care referrals, and many are only referred after ICU admission or prior to hospice initiation.7ACP happens rarely in advanced lung disease, with only about 20% of patients engaging in these conversations on average and almost 30% of these discussions occurring in the last three days of life.9 With timely and appropriate discussion of ACP and GOC, patients were less likely to receive unnecessarily intensive care towards end of life.11Hospice and Palliative Care Improve Clinical OutcomesWhen asked about their goals and needs, patients with advanced illness desired controlling pain and symptoms, avoiding inappropriate prolongation of the dying process, having a sense of control, relieving burdens on family, and strengthening relationships with loved ones. Greater utilization of hospice during the last 6 months of life is associated with improved patient experience and clinical outcomes.10 Patients with ALD and their families experience improved overall satisfaction with their care, improved symptom control and quality of life, fewer unnecessary procedures and interventions near the end of life and higher likelihood of dying at home. Earlier hospice referral has even been associated with prolonged survival.1Hospice Cost Savings: A Matter of Dollars and SensePer a recent report from NORC, hospice provides significant cost savings. The cost for Medicare beneficiaries who used hospice was lower than the cost for those who did not use hospice, with a 20% lower average total cost of care seen in beneficiaries with respiratory disease.12NORC's findings show clear quantitative cost-saving benefit with the use of hospice in patients with respiratory diseases; however, the principal benefits of hospice remain the improvements in quality of life and in patient, family, and caregiver satisfaction.Hospice Can HelpHospice alleviates symptom burden and improves quality of life for patients suffering from ALD and COPD; it promotes goal-concordant care with decreased readmissions, reduced in-hospital mortality, lower total costs of care, and improvement in patient satisfaction.Related: Hospice Eligibility Guidelines for Patients with ALD/COPDIf your patient does not yet qualify for hospice, bringing palliative care onboard early in the patient's disease course can help facilitate advance care planning and goals of care discussion, and ease a patient's transition into hospice when the time is right.The prevalence of ALD in general and COPD in particular means that there is a large patient population that is not currently taking advantage of the myriad benefits that hospice can provide. There is ample opportunity for hospice to improve the quality of life for millions of patients and for their caregivers and loved ones.1. Adler ED, Goldfinger JZ, Kalman J, Park ME, Meier DE. Palliative care in the treatment of advanced heart failure. Circulation. 2009;120(25):2597-2606. doi:10.1161/circulationaha.109.869123  2. Basics about COPD. Centers for Disease Control and Prevention. June 30, 2023. https://www.cdc.gov/copd/basics-about.html.  3. Brown CE, Jecker NS, Curtis JR. Inadequate palliative care in chronic lung disease. an issue of health care inequality. Annals of the American Thoracic Society. 2016;13(3):311-316. doi:10.1513/annalsats.201510-666ps  4. COPD trends brief - burden. COPD Trends Brief - Burden | American Lung Association. https://www.lung.org/research/trends-in-lung-disease/copd-trends-brief/copd-burden.  5. COPD trends brief - mortality. COPD Trends Brief - Mortality | American Lung Association. https://www.lung.org/research/trends-in-lung-disease/copd-trends-brief/copd-mortality.  6. COPD trends brief - prevalence. COPD Trends Brief - Prevalence | American Lung Association. https://www.lung.org/research/trends-in-lung-disease/copd-trends-brief/copd-prevalence.  7. Cross SH, Ely EW, Kavalieratos D, Tulsky JA, Warraich HJ. Place of death for individuals with chronic lung disease. Chest. 2020;158(2):670-680. doi:10.1016/j.chest.2020.02.062  8. Donaldson G, Wedzicha J. The causes and consequences of seasonal variation in COPD exacerbations. International Journal of Chronic Obstructive Pulmonary Disease. Published online 2014:1101. doi:10.2147/copd.s54475  9. Jabbarian LJ, Zwakman M, van der Heide A, et al. Advance care planning for patients with chronic respiratory diseases: A systematic review of preferences and practices. Thorax. 2017;73(3):222-230. doi:10.1136/thoraxjnl-8552-147202  10. Kleinpell R, Vasilevskis EE, Fogg L, Ely EW. Exploring the Association of Hospice Care on patient experience and outcomes of care. BMJ Supportive & Palliative Care. 2016;9(1). doi:10.1136/bmjspcare-8552-147202  11. Lee RY, Curtis JR, Kross EK. Physician orders for life-sustaining treatment and ICU admission near the end of lifereply. JAMA. 2020;324(6):608. doi:10.1001/jama.2020.8654  12. NORC at the University of Chicago (2023). Value of Hospice in Medicare. Available at: https://www.nhpco.org/wp-content/uploads/Value_Hospice_in_Medicare.pdf 13. Shen JJ, Ko E, Kim P, et al. Life-sustaining procedures, palliative care consultation, and do-not resuscitate status in dying patients with COPD in US hospitals. Journal of Palliative Care. 2018;33(3):159-166. doi:10.1177/0825859718777375  14. Tseng C-M, Chen Y-T, Ou S-M, et al. The effect of cold temperature on increased exacerbation of chronic obstructive pulmonary disease: A nationwide study. PLoS ONE. 2013;8(3). doi:10.1371/journal.pone.0057066  15. Wise RA, Calverley PM, Carter K, Clerisme-Beaty E, Metzdorf N, Anzueto A. Seasonal variations in exacerbations and deaths in patients with COPD during the TIOSPIR trial. International Journal of Chronic Obstructive Pulmonary Disease. 2018;Volume 13:605-616. doi:10.2147/copd.s148393  16. Yaqoob ZJ, Al-Kindi SG, Zein JG. Trends and disparities in hospice use among patients dying of COPD in the United States. Chest. 2017;151(5):1183-1184. doi:10.1016/j.chest.2017.02.030