Terminal Phase Of Illness Research Articles

Between Euthanasia and Dysthanasia: The Ethical Issue of Sedation in the Terminal Phase of Illness

Between Euthanasia and Dysthanasia: The Ethical Issue of Sedation in the Terminal Phase of Illness

Hematologic Malignancy: Who Cares in the End? A Retrospective Cohort Study of Markers of Quality End-of-Life Care.

Early palliative care is increasingly used in solid organ malignancy but is less established in patients with hematologic malignancy. Disease-related factors increase the demand for hospitalization, treatment, and supportive care in patients with hematologic malignancy. The terminal phase of illness in patients with hematologic malignancy can be difficult to predict, resulting in complexities in establishing a standard for quality end-of-life care. This is a retrospective single-center cohort study of adult patients with hematologic malignancy who died between October 2019 and July 2022. Patients were identified, and disease characteristics, therapy, and outcomes were extracted from medical records. Descriptive statistics are reported and univariate analyses were performed across a range of factors to assess for associations. A total of 229 patients were identified, with a median age of 77 years and 35% female. In the final 30 days of life, 65% presented to the emergency department, 22% had an ICU admission, 22% had an invasive procedure, 48% received cytotoxic therapy, 61% received a RBC transfusion, and 46% received a platelet transfusion. Use of intensive chemotherapy was particularly associated with hospitalization and ICU admission. A total of 74% referred to palliative care, with a median time from referral to death of 13 days. Of these patients, one-third were referred within the last 5 days of life. In terms of place of death, 54% died in the acute hospital setting and 30% in hospice, with a median hospice length of stay of 4 days. These findings highlight the need for further research into quality indicators for end of life in hematologic malignancy and earlier integration of specialist supportive and palliative care in both inpatient and outpatient settings.

P329 MANAGEMENT OF ADVANCED AND TERMINAL HEART FAILURE IN AN ELDERLY PATIENT WITH REDUCED EJECTION FRACTION

Abstract Heart failure (HF), despite new therapeutic strategies, remains a condition characterized by an inauspicious prognosis and poor quality of life. The management of advanced and then terminal SC proves to be a current challenge, especially in elderly patients. A.C, 87 years old is autonomous and cognitively intact (BADL preserved 5/6, MMSE 28/30). In June ‘21 femur fracture complicated by cerebral hemorrhage (no relics) and anterior STEMI (FE 25%). Not performed coronarography (contraindication to antiplatelet therapy). Discharged to NYHA II with ARNI, MRA and beta blocker. After 1 month hospitalized for HF in the course of AF, performed infusion of levosimendan. In September ‘21 taken over by our "HF clinic" with progressive titration of therapy and insertion of SGLT2–i. In January ‘22 due to precarious clinical compensation (NYHA III–IV) progressive increase in furosemide dosage and undertaken sequential nephron blockade with metolazone, with good response. Given advanced–HF situation, performed Levosimendan infusions under DH regimen (8 h; 0.05–>0.2 mcg/Kg/min; three times every 2 weeks) with clinical stabilization. In April, hospitalization for decompensation flare–up with worsening creatinine (0.8 >>>2 mg/dL). On discharge, given the precarious compensation, activated the "Hospital–Territory Rapid Intervention Group" with home diuretic infusions and stabilization of the clinical picture and subsequent new referral from the "heart failure clinic" with monthly FU. By November 2022, clinical (NYHA IV with diuretic resistance), cognitive and functional (MMSE 22/30, BADL preserved 2/6) worsening. Evaluated as an end–stage scenario (in the absence of further treatment options), family interview was performed, home nursing service activated for infusions of furosemide, and referred to the palliative care service to assist the patient in the terminal phase of illness at home (Fig. 1). Conclusion in order to ensure the best quality of life in the terminal phase of the disease, the management of advanced SC in the elderly patient must involve individualization of the care pathway, through multidimensional assessment of the patient and sharing of goals at the different stages: from intensive FU with optimization of therapy in the early stages to early activation of home and palliative care services in the more advanced stages.

Promoting Prognostic Understanding and Health Equity for Patients With Advanced Liver Disease: Using “Best Case/Worst Case”

Promoting Prognostic Understanding and Health Equity for Patients With Advanced Liver Disease: Using “Best Case/Worst Case”

The Struggle Between Protecting Children From and Preparing Them for the Death of Their Parent: A Qualitative Study.

The aim of this study was to gain a greater understanding of communicating with children about parental terminal illness from the perspective of the surviving parents. A qualitative descriptive study was conducted using semi structured interviews with eligible participants. Data was analyzed using thematic analysis. The results highlight the pressures experienced by surviving parents, grappling with trying to support their children's needs on a practical and emotional level, while coping with the emotional upheaval of the impending death of their partner. The issue of communication with the children starts long before the terminal phase of illness and the results confirm that this is an ongoing process that continues after the death of the parent. The need for services to be more responsive to the diverse needs of families was also apparent as a key factor in supporting families during this time. This research provides valuable insights into the complexity of communicating with children about terminal illness from the perspective of the surviving parents. It reveals diverse views and experiences in terms of approaching communication with children and illustrates the need for services to be acutely attuned to the unique needs of parents and children throughout the disease trajectory.

Neuro-oncology and supportive care: the role of the neurologist

The diagnosis of a brain tumor is a life-changing event for patients and their families. Despite numerous treatment advances, malignant brain tumors are universally incurable and long-term survival is limited. Treatment response, prognosis, and survival depend on underlying histopathology and recently defined molecular features. Patients suffer from a disproportionately high symptom burden throughout the disease trajectory and at the end of life. Pronounced neurologic decline and psychological distress significantly impair quality of life (QoL) and impose high supportive care needs relative to other systemic cancers. Palliative interventions addressing brain tumor-specific symptoms, such as seizures, cognitive dysfunction, and headaches, are paramount to maintaining QoL. In the terminal phase of illness, most brain tumor patients lose the ability to communicate and participate in end-of-life decision-making. The benefits of advance care planning and early integration of specialized palliative care are well-established in other systemic cancers and have received wider recognition in neuro-oncology. We review how to approach neurological symptoms in brain tumor patients, as well as address prognosis and advance care planning with the goal of improving QoL for patients and caregivers.

“Achieve the best while rushing against time”: A grounded theory study on caring for low-income immigrant cancer patients at end of life

Background: Between 2000 and 2020, Europe experienced an annual net arrival of approximately 1.6 million immigrants per year. While having lower mortality rates, in the setting of severe diseases, immigrants bear a greater cancer-related burden due to linguistic and cultural barriers and socio-economic conditions. Professionals face a two-fold task: managing clinical conditions while considering the social, economic, cultural, and spiritual sphere of patients and their families. In this regard, little is known about the care provision to low-income immigrant cancer patients in real contexts. Aim: To investigate the perspective of professionals, family members, and stakeholders on the caring process of low-income immigrant cancer patients at the end of life. Design: A Constructivist Grounded Theory study. Setting/participants: The study, conducted at a Hospital in Northern Italy, involved 27 participants among health professionals, family caregivers, and other stakeholders who had recently accompanied immigrant cancer patients in their terminal phase of illness. Results: Findings evidenced that professionals feel they were not adequately trained to cope with immigrant cancer patients, nonetheless, they were highly committed in providing the best care they could, rushing against the (short) time the patients have left. Analyses evidenced four main categories: “providing and receiving hospitality,” “understanding each other,” “addressing diversity,” and “around the patient,” which we conceptualized under the core category “Achieve the best while rushing against time.” Conclusions: The model reveals the activation of empathic and compassionate behavior by professionals. It evidences the need for empowering professionals with cultural competencies by employing interpreters and specific training programs.

We all want to die in peace - So why don’t we?

ObjectivesApproximately 70% of Americans would prefer to die at home and avoid hospitalization or intensive care during the terminal phase of illness. Given the wish to die at home, it...

Drug therapy for delirium in terminally ill adults.

Drug therapy for delirium in terminally ill adults.

A Nonheroic Cancer Narrative: Body Deterioration, Grief, Disenfranchised Grief, and Growth.

This longitudinal nonheroic narrative study allows familiarity with personal and societal transitions in the self-identity of individuals with life-threatening cancer. The theoretical anchor is Bion's container-contained theory. Five interviews with a terminally ill hospitalized male in his 30s were conducted along intervals of between 6 and 8 weeks, up to 2 months before his death. Data were analyzed using the selection mechanisms method. Findings provide insights about the hospitalization experience, his grief, and disenfranchised grief. A rigid mode of container-contained relationships with clinicians created disenfranchised grief. Reflection and coherence among self-identities lead to inner strength and emotional growth despite the body's deterioration. Clinicians have a role in holistic identity transitions of individuals with cancer. Findings illuminate practical recommendations that clinicians may adopt to improve the experience of individuals suffering from cancer at the chronic and terminal phase of illness.

Removing Obstacles to a Peaceful Death

We all will die, but the American health care system often impedes a peaceful death. Instead of a quiet death at home surrounded by loved ones, many of us suffer through overutilization of sometimes-toxic therapeutic interventions long past the time when those interventions do more good than harm. This article proposes revisions to health professional training and payment policy to eliminate as much as possible physical and existential suffering while progressing through the terminal phase of illness. The solution lies in seamless progression from treatment with integrated palliative care to hospice before death, but provider attitudes and payor practices must change for that to occur. Thus, the article proposes increased training in communicating truthfully about prognosis and prospective benefit of therapies; further adoption of interprofessional practice, which would familiarize more professionals with the team-based approach characteristic of palliative care; and revision of payment mechanisms to incentivize high-quality care whether it is of low or high intensity.

Web-based individual Mindfulness-Based Cognitive Therapy for cancer-related fatigue — A pilot study

BackgroundSevere fatigue may persist for many years in cancer survivors and has a considerable impact on a patient's life. This condition is called cancer-related fatigue (CRF). Mindfulness-Based Cognitive Therapy has shown to significantly reduce CRF in cancer survivors. Internet-delivered interventions can be valuable for fatigued patients who are not able to travel to a healthcare institute because of the lack of energy and/or physical limitations. Therefore, we have developed a web-based, therapist guided individual 9-week Mindfulness-Based Cognitive Therapy (eMBCT) aimed at diminishing CRF. ObjectiveThe aim of this study was to evaluate the efficacy of eMBCT in a clinical setting in reducing fatigue severity and distress in cancer survivors. MethodsThis pilot study was based on data from severely fatigued cancer survivors who applied for eMBCT between 2009 and 2013. Our primary outcome measure was the change in self-reported web-assessed fatigue severity, measured with the Fatigue severity subscale of the Checklist Individual Strength before (baseline) and one month after (post-assessment) eMBCT. The secondary outcome was distress (HADS) and the proportion of participants that showed clinically relevant improvement on fatigue severity. Patients' satisfaction with using eMBCT and reasons for non-adherence were studied. Intention-to-treat analyses were performed using multiple imputations to deal with data loss at post-assessment. All patients had to be severely fatigued at baseline (≥35 on the fatigue severity subscale of the Checklist Individual Strength), were >18years old, had no history of psychosis or current Major Depressive Disorder, finished their last cancer treatment at least six months ago (mixed cancer types), and were not in the terminal phase of illness. Patients were recruited offline as well as online. ResultsTwo-hundred fifty-seven patients (age range 22–79 (M=50.2, SD=10.7), 76% women, 44% breast cancer, most had had surgery, chemo- and/or radiotherapy) met our inclusion criteria. Paired samples t-tests showed that fatigue severity was significantly reduced post-assessment (t(18)=13.27, p<.001, Cohen's d: 1.45 as well as distress (t(46)=7.66, p<.001, Cohen's d: 0.71). Thirty-five percent (n=89) was clinically relevant improved at post-assessment and 62% (n=159) adhered to treatment. This study had a completion rate of 1.5 and a registration rate of 2.3. ConclusionThese findings suggest that individual eMBCT may be effective in reducing fatigue in cancer survivors. A randomized controlled study with a large sample and longer follow up is needed to demonstrate the effectiveness of eMBCT for CRF.

A Nationwide Survey on Palliative Sedation for Terminally Ill Cancer Patients By the Austrian Palliative Care (Aupac) Study Group

ABSTRACT Aim: Palliative sedation (PS) is defined as the controlled use of sedative drugs to alleviate unbearable suffering caused by refractory symptoms. Intractable distress longing for subsequent sedating treatment may frequently occur especially in oncological patients in the terminal phase of illness. Application of this approach requires special expertise but consensus on best practice is achieved incompletely. The aim of this study was to assess the current practice of PS in Austria. Methods: Data on sedation were retrieved of all patients who died at an AUPAC (Austrian Palliative Care) study group unit between June 2012 and June 2013. Besides clinical characteristics, frequency, duration, indication and medication of PS in the last two weeks of life were evaluated. Furthermore co-medications given in the last three days before death were recorded. Results: In total 1994 cancer patients died at 22 AUPAC units in the study period. 22.4% (range 0-50%, n = 435) received PS in the last two weeks of their lives. The main indications for PS were delirium (48.5%), existential suffering (34%), refractory dyspnea (28%) and pain (20.2%). 73.6% of all patients received deep continuous sedation and 22.3% transient sedation. The drugs used for sedation were midazolam (77.7%), lorazepam (14.7%) and haloperidol (10.1%). 33.8% of all patients were sedated only in the last 24 hours before death. The following co-medications were given concomitant to palliative sedation in the last three days of life: non-opioids (49.9%), opioids (96.1%), i.v. antibiotics (20.2%), deep venous thrombosis prophylaxis (24.4%), hydration (54.5%) and nutrition (24.4%). Sedated patients were significantly younger than non-sedated ones (p =, 000*) and the percentage of male patients was significantly higher in the sedated group (p =, 043*). There was no detectable difference in survival time between sedated and non-sedated patients. Conclusions: There is a considerable heterogeneity in the use of PS in oncological patients in Austrian palliative care units which cannot be explained by disease associated variables. Since the use of PS is associated with significant ethical issues, training of physicians and implementation of an Austrian nation-wide guideline is mandatory. Disclosure: All authors have declared no conflicts of interest.

Effect of an integrated cancer support team on caregiver satisfaction with end-of-life care.

To test the effectiveness of an interdisciplinary cancer support team (CST) on caregiver satisfaction with end-of-life (EOL) care for family members with advanced cancer. Quasi-experimental pre- and post-test tandem design. Outpatient clinics of a comprehensive cancer center in urban Cleveland, OH. 106 family caregivers. Participants were enrolled into the control or CST group. Caregiver mood state and social support were measured at enrollment as well as at 3, 9, and 15 months, and satisfaction with EOL care was measured eight weeks after the patient's death. Caregiver mood state, social support, and satisfaction with EOL care. The intervention made no statistically significant contribution to caregiver mood state or perception of social support. The intervention group reported higher satisfaction with overall EOL care as well as five specific areas of EOL satisfaction (i.e., pain relief, information about managing pain, speed in treating symptoms, information regarding side effects, and coordination of care). The CST yielded improved EOL satisfaction. Although the emotional impact of an impending loss of a loved one may not change with the provision of support, perception that a loved one was well cared for in the terminal phase of illness may have long-range benefits through the grieving process. Investigation of the long-range effects of satisfaction with EOL care on the grieving process is warranted.

Part of the Solution—Outpatient Palliative Care for Patients with Decompensated Heart Failure (FR405)

1.Define unmet palliative care needs of ambulatory patients with advanced heart failure and outline key components of a palliative care evaluation specific to this population.2.Describe an innovative multidisciplinary model of triage and intervention for ambulatory patients with decompensated heart failure that includes triggers for and access to outpatient palliative care consultation.3.Identify opportunities for improved interdisciplinary collaboration between the fields of palliative care and cardiology to improve care for patients with advanced heart failure and their families. Patients with advanced heart failure experience a significant symptom burden, have poor understanding of their likely trajectory of illness or prognosis, often receive ineffective and burdensome medical interventions at the end of life, and underuse interventions that promote quality of life such as timely hospice referrals. Emerging evidence supports the integration of specialty-level palliative care for these patients, but the role and outcomes of palliative care consultation for these patients are not well defined. New models of collaboration between heart failure and palliative care specialists are needed. The Ambulatory Cardiac Triage, Intervention, and Education (ACTIVE) Heart Failure Unit, which opened in May of 2013, is a multidisciplinary ambulatory heart failure treatment initiative at the Brigham and Women’s Hospital with the capacity for intravenous infusion of diuretics and other therapies to ameliorate heart failure symptoms that would typically require hospital admission. In addition to patient education, counseling regarding medication adherence, and delivery of intravenous therapy to manage heart failure when needed, all patients will be screened at initial triage for palliative care consultation. Those who meet the criteria will receive outpatient palliative care consultation adjacent to the treatment area, unless their referring physician declines, in which case the reasons will be captured. Triggers for consultation include a likely prognosis of less than 6 months, refractory symptoms despite maximal medical therapy, concern that the patient’s or family’s understanding or goals of care are not aligned with the disease severity and treatment plan, three visits to the hospital or ACTIVE Unit in the last year, and home inotropic therapy without definitive advanced therapy options. We hypothesize that advanced care planning and palliative interventions may help to decrease admissions for both heart failure and non-heart failure causes, and could be particularly important in providing a shift in priorities to outpatient and hospice palliation during the terminal phase of illness.

EPA-1795 - Phenomenology of delirium: awareness VS. consciousness or DSM-5 VS DSM-IV

The new version of DSM-5 provides nearly the same criteria as DSM-IV for delirium with an exception. The DSM-5 requires a disturbance in awareness while DSM-IV, a disturbance in consciousness. Awareness is not the same as consciousness. In this study we examined the concordances between awareness and consciousness and the agreement between DSM-5 and DSM-IV. All acute medical admissions 70 years and over. Exclusion criteria: terminal phase of illness, severe aphasia, intubated. Those included were assessed on Day 1, 3, 7, 10 of their admission. During the assessment each individual was tested with: MoCA, DRS-98R, CAM, RASS and the subscale of levels of consciousness and awareness of surroundings from RCDS; APACHE II, CAPE and BARTHEL index. Demographic data and a medication list were also recorded. 123 participants; Mean age: 81.3 SD (6.7) range 70-100 years old Females 60(48.9%) Delirium according CAM 21 (17.1%) Delirium 23 (18.7%) Subsyndromal delirium 28 (22.8%) No delirium 72 (58.5%) Previous cognitive decline: 76 (61.8%) RCDS (awareness and consciousness) Mean awareness: 0.4, SD (0.8) Mean consciousness 0.4 SD (0.8). Correlation (agreement) between awareness and consciousness Kendal's Tau =260, p=0.026 Using the awareness definition of delirium 8 participants with full awareness of surroundings have been indentified as delirious according to DRS 98, while using the consciousness definition 12 participants where indentify as delirious. DSM-IV and DSM-5 detect two slightly distinct populations with delirium. Awareness and consciousness are not the same. DSM-5 is more restrictive in indentifying delirium.

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Introduction: 79 year old male presented with generalized weakness, slurred speech, altered mental status and labored breathing for several hours along with 20 pound weight loss over 6 months. Patient had three admissions at different hospital over the last 3 months for similar but milder presentation. Past work up included CT scan of the chest which was unrevealing and pulmonary function test (PFT) which showed restrictive lung disease with FEV1 of 48%, FVC of 44% of predicted and FEV1/FVC 84, though he was given the diagnosis of chronic obstructive pulmonary disease (COPD) as an explanation of his hyperbaric respiratory failure. Physical exam in the ED was pertinent for tachycardia, labored shallow breathing and lethargy. Auscultation of his chest demonstrated bilateral decreased breath sound. An arterial blood gas analysis showed pH of 7.04, PaCO2 of >130.00 mmHg and PaO2 of 218 mmHg on 100% oxygen. Chest x-ray and CT scan of the head were both unremarkable for acute process. Hypercarbia was initially attributed to possible COPD and obstructive sleep apnea (OSA). Patient's trachea immediately intubated and mechanical ventilation was begun. After borderline spontaneous breathing trial, patient was extubated next morning. Patient required bi-level noninvasive positive pressure mechanical ventilation (NIPPV) for moderate respiratory distress after extubation. A repeat physical examination was remarkable for impaired dorsiflexion of right ankle, tongue fasciculation and weak negative inspiratory force. There was no evidence of upper motor neuron dysfunction. Work up for neuromuscular weakness included antiacetylcholine receptor antibody, which was negative and electromyography, which demonstrated 2+ fasciculation and fibrillation potentials in >3 muscle groups. A diagnosis of progressive muscular atrophy (PMA) with early respiratory failure was made; it is believed to be a rare form of Amyotrophic Lateral Sclerosis (ALS). After discussing the merits and demerits of invasive mechanical ventilation via tracheostomy and gastrostomy tube insertion, he opted for comfort care. ALS is a neurodegenerative disease characterized by progressive muscular paralysis due to degeneration of lower and upper motor neurons in the primary motor cortex, brainstem, and spinal cord. Muscular paralysis is progressive and typically leads to death due to respiratory failure within 2-5 years of onset. However, only 3.0% of patients with ALS present with respiratory symptoms and 14% of this subpopulation requires mechanical respiratory support, a rare presentation of ALS. Clinical features of early respiratory failure like dyspnea on minor exertion, early morning headache, daytime fatigue and weight loss may be subtle and often overlooked. The classic form of ALS presents with both upper motor neuron (UMN) and lower motor neuron (LMN) findings, but it can be as in our case limited to LMN only and is referred to as PMA. Compared to ALS, patients with PMA are more likely to be males and live longer. Management of ALS in all of its forms is supportive, multidisciplinary and palliative. Early use of NIPPV in ALS patients prolong survival and improve quality of life. Invasive mechanical ventilation, implying the use of an endotracheal tube or a tracheostomy may be considered. Patient with bulbar dysfunction may need gastrostomy to support nutrition. A FVC of <50% of the predicted value has been shown to be associated with poor prognosis. Arriving to accurate diagnosis in timely manner is critical for health care team to expedited discussion with patient and family about management plan and encourage them to consider advanced directives regarding end of life. Patients should be provided with a realistic prognostication of the course of their disease and in the event of decline of full mechanical ventilation, patient and family should be provided with assurance that palliative care strategies can control symptoms in the terminal phase of illness.

Intensive Palliative Care for Patients With Hematological Cancer Dying in Hospice

Dying of hematological oncology patients often take place in respective hematology ward or intensive care unit rather than hospice. With the increased attention to quality palliative care for hematology patients, concerns regarding their level of medical care at end-of-life need to be addressed. We conducted a retrospective review of consecutive hematological oncology patients who succumbed in a palliative unit between July 2012 and August 2013. The primary outcome measure was their level of medical care received, including administration of antibiotics, total parenteral nutrition, blood sampling, GCSF injection and blood products transfusion, during their last seven days of life. During the last seven days of life, 85.7 % of patients had blood sampling and 23.8% of patients received G-CSF injection. Total parenteral nutrition was administered in 14.3% of patients. One-third of patients received transfusion of packed cells and nearly half of them received transfusion of platelet concentrates. Almost 90% of patients received antibiotics during their last week of life. Collaboration between hematology and palliative care has resulted in successful transition of hematologic cancer patients into hospice unit in their terminal phase of illness. However, their level of medical care, even approaching last seven days of life, remained intensive. Proper allocation of medical resources and future research regarding optimal end-of-life care for hematology patients are warranted.

Principles and Practice of Palliative Care

The trajectories of serious illness and dying have changed in the last century; in the past, patients lived shorter lives and often died quickly of infectious disease, whereas patients in the 21st century live longer and often with prolonged debility in the advanced stages of illness. As a result, patients with serious illness can suffer undertreated symptoms and often feel poorly prepared for the final stages of disease. With more options for advanced life support and other aggressive interventions at the end of life, patients and families face increasingly complex medical decisions in the terminal phase of illness, and the treatments they receive do not always align with their goals and values. Emerging evidence suggests that integrating palliative care into the treatment of advanced illness can improve outcomes, decrease costs, and improve both patient and family satisfaction. Consequently, patient access to high-quality specialty-level palliative care is becoming standard of care at most academic cancer centers and more available in the community. This chapter describes the practice and principles of specialty-level palliative care and outlines specific "generalist" palliative care competencies essential for all physicians caring for patients with serious illness, including prognostication, patient-centered communication, and the navigation of ethical dilemmas in the field of palliative care. Tables outline the philosophy of palliative care, domains of suffering, location of death of hospice patients, the palliative performance scale, median survival times for cancer syndromes, indicators associated with a poorer prognosis in congestive heart failure, the NURSE mnemonic for accepting and responding to emotion, palliative care communication competencies in the intensive care unit, and the SPIKES mnemonic for breaking bad news. Figures depict causes of death in 1900 versus 2010, palliative care through the trajectory of serious illness, theoretical trajectories of disease, life expectancies for women and men, mortality at 1 year post discharge, and a model for patient-centered communication. This review contains 6 highly rendered figures, 9 tables, and 169 references.

Principles and Practice of Palliative Care

The trajectories of serious illness and dying have changed in the last century; in the past, patients lived shorter lives and often died quickly of infectious disease, whereas patients in the 21st century live longer and often with prolonged debility in the advanced stages of illness. As a result, patients with serious illness can suffer undertreated symptoms and often feel poorly prepared for the final stages of disease. With more options for advanced life support and other aggressive interventions at the end of life, patients and families face increasingly complex medical decisions in the terminal phase of illness, and the treatments they receive do not always align with their goals and values. Emerging evidence suggests that integrating palliative care into the treatment of advanced illness can improve outcomes, decrease costs, and improve both patient and family satisfaction. Consequently, patient access to high-quality specialty-level palliative care is becoming standard of care at most academic cancer centers and more available in the community. This chapter describes the practice and principles of specialty-level palliative care and outlines specific "generalist" palliative care competencies essential for all physicians caring for patients with serious illness, including prognostication, patient-centered communication, and the navigation of ethical dilemmas in the field of palliative care. Tables outline the philosophy of palliative care, domains of suffering, location of death of hospice patients, the palliative performance scale, median survival times for cancer syndromes, indicators associated with a poorer prognosis in congestive heart failure, the NURSE mnemonic for accepting and responding to emotion, palliative care communication competencies in the intensive care unit, and the SPIKES mnemonic for breaking bad news. Figures depict causes of death in 1900 versus 2010, palliative care through the trajectory of serious illness, theoretical trajectories of disease, life expectancies for women and men, mortality at 1 year post discharge, and a model for patient-centered communication. This chapter contains 6 highly rendered figures, 9 tables, 169 references, 1 teaching slide set, and 5 MCQs.