Objective: Characterize hospice staff practices and perspectives on discussing end-of-life care preferences with patients/families, including those desiring intensive treatment and/or full code.
Background: Patients in the United States can elect hospice while remaining full code or seeking intensive interventions, for example, blood transfusions, or chemotherapy. These preferences conflict with professional norms, hospice philosophy, and Medicare hospice payment policies. Little is known about how hospice staff manage patient/family preferences for full-code status and intensive treatments.
Methods: We recruited employees of four nonprofit US hospices with varying clinical and hospice experience for semi-structured, in-depth interviews. Open-ended questions explored participants' practices and perceptions of discussing end-of-life care preferences in hospice, with specific probes about intensive treatment or remaining full code. Interdisciplinary researchers coded and analyzed data using the constant comparative method.
Results: Participants included 25% executive leaders, 14% quality improvement administrative staff, 61% clinicians (23 nurses, 21 social workers, 7 physicians, and 2 chaplains). Participants reported challenges in engaging patients/families about end-of-life care preferences. Preferences for intensive treatment or full-code status presented an ethical dilemma for some participants. Participants described strategies to navigate such preferences, including educating about treatment options, and expressed diverse reactions, including accepting or attempting to shift enrollee preferences.
Discussion: This study illuminates a rarely studied aspect of hospice care: how hospice staff engage with enrollees choosing full code and/or intensive treatments. Such patient preferences can produce ethical dilemmas for hospice staff. Enhanced communication training and guidelines, updated organizational and federal policies, and ethics consult services may mitigate these dilemmas.
Long-term care (LTC) nurses are a critical nexus for patient communication and vital to advance care planning due to their professional role and breadth of patient relationships. The current study's aim was to explore the communication strategies Midwestern LTC nurses use to clarify patients' end-of-life (EOL) care preferences. Two focus groups used a phenomenological framework to elucidate the experiences of 14 RNs. Data analysis revealed two themes grounded in time: (a) nurses use time to assess patients' EOL situation and assist patients to discern care options; and (b) nurses educate patients about EOL care, adjust care plans, and develop trusting relationships. Two themes were grounded in clinical experience: (a) nurses become persistent advocates and educators to initiate and sustain EOL communication; and (b) nurses learn consistency in communication, including awareness of patients' nonverbal communication. Nurses shared that EOL communication is never "done"; time frames to assess, educate, and clarify are continuous.
The Advancing American Kidney Health (AAKH) Initiative aims to promote high-value patient-centered care by improving access to and quality of treatment options for kidney failure. The 3 explicit goals of the initiative are to reduce the incidence of kidney failure, increase the number of available kidneys for transplantation, and increase transplantation and home dialysis. To ensure a patient-centered movement toward home dialysis modalities, actionable principles of palliative care, including systematic communication and customized treatment plans, should be incorporated into this policy. In this perspective, we describe 2 opportunities to strengthen the patience-centeredness of the AAKH Initiative through palliative care: (1) serious illness conversations should be required for all dialysis initiations in the End-Stage Renal Disease Treatment Choices model, and (2) conservative kidney management should be counted as a home modality alongside peritoneal dialysis and home hemodialysis. A serious illness conversation can help clinicians discern whether a patient's goals and values are best respected by a home dialysis modality or whether a nondialytic strategy such as conservative kidney management should be considered. An intensive and careful patient- and family-centered selection process will be necessary to ensure that no patient is pressured to forego conventional dialysis.
The COVID-19 pandemic presented unique health and social challenges for hospice patients, their families, and care providers. This qualitative study explored the impact of the pandemic on this population through the experiences and perceptions of social workers in hospice care. A survey was distributed through national and local listservs to social work practitioners throughout the United States between May 15 and June 15, 2020. The study was designed to learn the following: (1) Concerns patients experienced as a result of the pandemic, (2) strengths/resilience factors for patients during the COVID-19 pandemic, and (3) the personal and professional impact of the pandemic on social workers. Themes uncovered in hospice care included isolation, barriers to communication, disruption of systems, issues related to grieving, family and community support, adaptation, and perspective. The authors provide recommendations for social work practice related to virtual communication, emergency planning, and evidence-based intervention for Persistent Complex Bereavement Disorder. Recommendations for policy include uniform essential worker status for social workers, telehealth reimbursement and expanded caregiver respite benefits.
Objective: The objective of this study was to assess the psychosocial distress and associated factors in advanced cancer patients consulting at the outpatient Palliative Care Unit at the National Cancer Institute in Mexico City.
Design: A retrospective study was conducted using electronic records (June 2015 to December 2016).
Sample: A total of 646 patients with advanced cancer during their first visit to the outpatient palliative care unit at the National Cancer Institute in Mexico were evaluated using the Distress Thermometer (DT) and ECOG performance status scores.
Findings: Overall, 62% were women, with a median age of 57 years, and married (54.8%). The most frequent diagnosis was gastrointestinal cancer (28.6%), and 38.9% had a functional performance status of ECOG 2. The median DT score was 4.0 (IQR = 2–6), with 56% reporting DT scores =4. The three most frequent problems =4 were sadness (82.6%), feeling weak (81.2%), worry (79.6%), and <4 were feeling weak (57.7%), fatigue (55.6%), and financial security (52.1%). The variables associated with distress according to the multiple logistic regression analysis were problems with housing (OR = 2.661, 95% CI = 1.538–4.602), sadness (OR = 2.533, 95% CI = 1.615–3.973), transportation (OR = 1.732, 95% CI = 1.157–2.591), eating (OR = 1.626, 95% CI = 1.093–2.417), nervousness (OR = 1.547, 95% CI = 1.014–2.360), and sleep (OR = 1.469, 95% CI = 1.980–2.203).
Conclusion: The principal factors were related to distress levels, housing problems, transportation issues, and emotional problems such as sadness, nervousness, lower functionality, and younger age. Therefore, psychosocial support is of considerable relevance in palliative care. These findings will help clinicians understand the distress of patients with advanced cancer in palliative care in Latin American countries.
Background: Emergency Medical Services (EMS) are often involved in end-of-life circumstances, yet little is known about how EMS interfaces with advance directives to forego unwanted resuscitation (Do Not Attempt Resuscitation (DNAR)). We evaluated the frequency of these directives involved in out-of-hospital cardiac arrest (OHCA) and how they impact care.
Methods: We conducted a cohort investigation of adult, EMS-attended OHCA from January 1 to December 31, 2018 in King County, WA. DNAR status was ascertained from dispatch, EMS, and hospital records. Resuscitation was classified according to DNAR status: not initiated, initiated but ceased due to the DNAR, or full efforts.
Results: Of 3152 EMS-attended OHCA, 314 (9.9%) had a DNAR directive. DNAR was present more often among those for whom EMS did not attempt resuscitation compared to when EMS provided some resuscitation (13.2% [212/1611] vs 6.6% [101/1541], (p < 0.05).
Of those receiving resuscitation with a DNAR directive (n = 101), the DNAR was presented on average 6 min following EMS arrival. A total of 82% (n = 83) had EMS efforts ceased as a consequence of the DNAR while 18% (n = 18) received full efforts. Full-efforts compared to ceased-efforts were more likely to have a witnessed arrest (67% vs 36%), present with shockable rhythm (22% vs 6%), achieve spontaneous circulation by time of DNAR presentation (50% vs 4%), and have family contradict the DNAR (33% vs 0%) (p < 0.05 for each comparison).
Conclusions: Approximately 10% of EMS-attended OHCA involved DNAR. EMS typically fulfilled this end-of-life preference, though wishes were challenged by delayed directive presentation or contradictory family wishes.
Purpose: Prolonged living with chronic illness and disability expands the discussion of end-of-life conversation because of the complex role of intercommunication among patient, family, and healthcare staff. Little is known about such interaction from participants’ different perspectives. This qualitative case study examined end-of-life conversation among patient, family, and staff during long-term hospitalization in a neurological rehabilitation department.
Methods: After the patient’s death, 18 participants responded to in-depth semi-structured interviews: 16 healthcare staff and two family members (the patient’s wife and brother). In addition, we used the wife’s autoethnographic documentation of her experiences during end-of-life conversation.
Results: Thematic analysis produced three themes: (1) The Rehabilitation Department’s Mission – Toward Life or Death? (2) The Staff’s Perception of the Patient; (3) Containing Death: End-of-life Conversation from Both Sides of the Bed. These themes represented participants’ different perspectives in the intercommunication in overt and covert dialogues, which changed over time. Death’s presence–absence was expressed by movement between clinging to life and anticipating death.
Conclusion: The study findings emphasize the importance of practitioners’ training to accept and openly discuss death as an inseparable part of life-long disability, and the implementation of this stance during end-of-life care via sensitive conversations with patients and their families.
IMPLICATIONS FOR REHABILITATION It is vital for rehabilitation professionals to be trained to process and accept end-of-life issues as a natural and inseparable part of the life discourse among people with disabilities and their families. Rehabilitation professionals need to acquire tools to grasp the spoken and unspoken issues related to life and death, and to communicate their impressions and understandings with people with disabilities and their families. Rehabilitation professionals need to encourage an open dialogue when communicating with people with disabilities and their families on processes related to parting and death.
AIMS: This study explored perceptions on a good-life, good-death, and advance care planning in Koreans with non-cancerous chronic diseases with the goal to develop a culture-specific advance care planning intervention in this population.
DESIGN: A qualitative descriptive design was used.
METHODS: Data collections were conducted between September 2017 - June 2018. Twenty-nine patients aged 41-82 years (85.8% men) participated in the interviews lasting 40-60 min. The verbatim transcriptions of the semi-structured interview data were analysed using conventional content analysis.
RESULTS: Good-life was described as 'present with physical and financial independence,' 'not burdensome to the family,' 'completed life responsibility', and 'helping others.' Some participants described good-death as 'prepared death' while others considered it as 'sudden death during sleep.' All participants wanted to have a painless death and not burden the family. Advance care planning was a new concept to many participants. It was likened to 'insurance.' Some participants believed that decision-making on life-sustaining treatment should be done by their family, not themselves, because of economic or emotional distress. Some participants wanted to discuss medical and non-medical care services to reduce the burden on self and family.
CONCLUSION: Family is key when it comes to the meaning of good-life and good-death. Cultural adaptation is necessary to meet the advance care planning needs of Koreans with non-cancerous chronic diseases.
IMPACT: Successfully implementing advance care planning in Koreans with non-cancerous chronic diseases depends on how it is adapted to the disease-specific characteristics compared with cancer, and the cultural norms and social context. Nurses need to be prepared to offer advance care planning to persons with non-cancerous chronic diseases based on a keen sense of and empathetic cultural competence.
With increased therapeutic capabilities in healthcare today, many patients with multiple progressive comorbidities are living longer. They experience recurrent hospitalizations and often undergo procedures that are not aligned with their personal goals. That is why it is essential to discuss and document healthcare preferences prior to an acute event when significant interventions could occur, especially for patients with serious and progressive illness. Completion of an advance directive and a physician order for life-sustaining treatment (POLST) supports provision of goal-concordant care. Further, for patients who have do not attempt resuscitation (DNAR) orders or are diagnosed with advanced dementia, having a POLST is essential. This may be best accomplished with hospitalization discharge plans. Our 896-bed academic medical center, Cedars-Sinai Medical Center, launched a quality initiative in 2015 to complete POLSTs for patients being discharged with DNAR status or with dementia returning to a skilled nursing facility. As part of interdisciplinary progression of care rounds, emphasis was placed on those patients for whom POLST completion was indicated. Proactive, facilitated discussions with patients, family members, and attending physicians were initiated to support POLST completion. The completed forms were then uploaded to the electronic health record. Individual units and physicians received regular feedback on POLST completion rates, and the data were later shared at medical staff quality improvement meetings.During the initiative, POLST completion rates for DNAR patients discharged alive rose from 41% in fiscal year (FY) 2014 to 75% in FY 2019. Similar improvement was seen for patients with dementia discharged to skilled nursing facilities, regardless of code status (rising from 14% in FY 2014 to 54% in FY 2019). Subsequently, we have expanded our efforts to include early discussion and completion of these advanced care planning documents for patients recently diagnosed with high mortality cancers (ovarian, pancreatic, lung, glioblastoma), focusing on the completion of advanced care planning documentation and palliative care referrals.
BACKGROUND: Progress in advance care planning (ACP) in China has been hindered for decades compared with other countries.
AIMS: To describe knowledge of ACP, end-of-life care preferences and the predictors of their preference for ACP and who should mention ACP among Chinese lung cancer patients.
METHODS: Questionnaire-based interview were carried out. 258 lung cancer patients were recruited when first admitted in Tongji Hospital from October 2017 to November 2018. Social-demographic factors, which may influence patients' preference on ACP decisions and who should mention ACP, were evaluated by multivariate Logistic Regression analysis.
RESULTS: 91.1% of the patients (n = 235) favoured ACP on End of life (EOL) issues. 160 (60%) patients wish to make EOL decisions on their own. Only 10% of patients were familiar with Advance Directions. 82 (31.8%) patients were familiar with Do not resuscitate/Do not intubate (DNR/DNI) directions. ACP was not mentioned in 92.2% of patients. Gender (men, OR = 4.87 (2.16-5.83)), tumour stage (Stage III, OR = 0.108 (0.06-0.51); Stage IV, OR = 1.780 (1.02-2.11)) and the number of children (every increase in the number of children, OR = 0.267 (0.09-0.93)) were the significant predictors of the preference for autonomous ACP. Female patients and patients currently receiving treatment are 2.743 and 1.8 times respectively, more willing to need ACP initiated by doctors.
CONCLUSIONS: Chinese patients showed preferences toward ACP but with inadequate knowledge. More assistance is needed on ACP among those patients especially for females, patients with one child and early-stage lung cancer. For female patients and patients receiving treatment, doctors may initiate ACP dialogue first.
PURPOSE: To explore advance care planning (ACP) awareness, experiences, and preferences of people with cancer and support people of someone with cancer, in Australia.
METHODS: Descriptive analysis and independent group t tests were used to examine data from a national, online cross-sectional survey.
RESULTS: Of 705 respondents (440 people with cancer, 265 support people), 48.5% of participants had heard of ACP prior to the survey and 65% had discussed their values or preferences with someone. Significantly more people aged under 65 years had discussed their preferences than their older counterparts. Most (93%) discussions occurred with family or friends, but only 3.7% occurred with a health professional. A total of 33% had documented their preferences, with support people, women, and people aged under 65 years significantly more likely to have signed a legal document appointing someone to make medical decisions on their behalf. Views varied about the preferred timing of ACP and end-of-life care discussions (38.3% when cancer is incurable compared to 20% at diagnosis). Only 3.0% did not want to discuss ACP at all. Topics discussed were significantly different based on cohort, gender, age group, treatment status, and region.
CONCLUSION: Despite increasing community awareness of ACP, understanding remains low amongst cancer patients and support people, who generally rely on discussions with family and friends rather than health professionals. ACP should be introduced early across multiple interactions with health professionals, discuss a broad range of ACP relevant topics, and involve the cancer patient and their support person.
A 55-year-old man undergoes emergent exploratory laparotomy and splenectomy following a motorcycle collision. Following surgery, he is found to have a traumatic brain injury requiring decompressive craniectomy and intracranial pressure monitoring. The patient then continues to have complications throughout his hospital course. Using the American College of Surgeons Trauma Quality Improvement Program guidelines, the surgical team has early and ongoing primary palliative care discussions to foster communication and determine goals of care for the patient. As the patient deteriorates, the surgical team continues meeting with the patient’s surrogate decision makers to discuss the best case and worst case scenarios regarding the patient’s prognosis and expected quality of life.
Purpose: Misconceptions regarding activity and toxicity of therapeutic interventions are common among cancer patients. There is little knowledge about the factors that contribute to a more realistic perception by patients.
Methods: This pilot study was designed as a prospective questionnaire survey and included 101 therapy-naïve patients treated at the Division of Oncology, Medical University of Vienna. After obtaining written informed consent, patients’ expectations about treatment aims, side effects and the satisfaction with their oncologic consultation were interrogated before the first treatment cycle by questionnaires.
Results: Of 101 patients, 53 (53%) were female and 67/101 (66%) were treated with curative attempt in an adjuvant or neo-adjuvant setting. The most common diagnoses were lung cancer (31%) and breast cancer (30%). Although 92% of patients were satisfied with the information given by their oncologist, palliative patients were more likely to declare that not everything was explained in an intelligible manner (p = 0.01). Patients with a first language other than German stated more often that their physician did not listen carefully enough (p = 0.02). Of 30 patients, 26 (87%) receiving chemotherapy with palliative intent believed that their disease was curable. Concerning adverse events, female patients anticipated more frequently hair loss (p = 0.003) and changes in taste (p = 0.001) compared to men. Patients under curative treatment were more likely to expect weight loss (p = 0.02) and lack of appetite (p = 0.01) compared to patients with palliative treatment intent.
Conclusion: In conclusion, cancer patients were satisfied with the patient-doctor communication. This prospective study aggregated patients’ concerns on side effects and the perception of therapeutic goals in therapy-naïve patients. Of note, the majority of patients treated in the palliative setting expected their treatment to cure the disease.
CONTEXT: Fatigue is the most commonly reported symptom in life-limiting illnesses, though not much is known about the distress it causes patients as they approach death.
OBJECTIVES: To map the trajectory of distress from fatigue reported by an Australian palliative care population in the last 60 days leading up to death.
METHODS: A prospective, longitudinal, consecutive cohort study using national data from the Australian Palliative Care Outcomes Collaboration between 1 July 2013 and 31 December 2018. Patients were included if they had at least one measurement of fatigue on a 0-10 numerical rating scale in the 60 days before death. Descriptive statistics were used to analyse patients by diagnostic cohort and functional status.
RESULTS: A total of 116,604 patients from 203 specialist palliative care services were analysed, providing 501,104 data points. Distress from fatigue affected up to 80% of patients referred to palliative care, with the majority experiencing moderate or severe distress. Malignant and non-malignant diagnoses were equally affected, with the neurological cohort showing the greatest variability. The degree of distress correlated with a patient's functional level; it worsened as a patient's function declined until a patient became bedbound when the reporting of distress reduced.
CONCLUSIONS: Distress from fatigue is high in this cohort of patients. Interventions to reduce this distress need to be a research priority.
Amid the ongoing ethical and societal debate, there has been a growing global movement toward the legalization of medical assistance in dying (MAID). In patients with terminal cancer and comorbid depression, the contributing role of depression in the decision-making processs to pursue MAID can be challenging to determine.
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Nurses conduct physical and psychosocial assessments during admissions to healthcare facilities. Patients rely upon nurses to provide support and education during their journey, from periods of health decline to states of optimal wellness. Therefore, nurses are an ideal population to assess spiritual health. The value and necessity of spiritual assessment were explored on an inpatient unit providing medical and palliative care to patients. Two spiritual assessment tools, comprised each of five items, were evaluated by nursing staff and patients. Spiritual Assessment Tool 1 used language that was unaffiliated with religion, nor a belief in God, and Spiritual Assessment Tool 2 used language affiliated with faith and belief in God.
Background: The Western individualistic understanding of autonomy for advance care planning is considered not to reflect the Asian family-centered approach in medical decision-making. The study aim is to compare preferences on timing for advance care planning initiatives and life-sustaining treatment withdrawal between terminally-ill cancer patients and their family caregivers in Taiwan.
Methods: A prospective study using questionnaire survey was conducted with both terminally-ill cancer patient and their family caregiver dyads independently in inpatient and outpatient palliative care settings in a tertiary hospital in Northern Taiwan. Self-reported questionnaire using clinical scenario of incurable lung cancer was employed. Descriptive analysis was used for data analysis.
Results: Fifty-four patients and family dyads were recruited from 1 August 2019 to 15 January 2020. Nearly 80% of patients and caregivers agreed that advance care planning should be conducted when the patient was at a non-frail stage of disease. Patients’ frail stage of disease was considered the indicator for life-sustaining treatments withdrawal except for nutrition and fluid supplements, antibiotics or blood transfusions. Patient dyads considered that advance care planning discussions were meaningful without arousing emotional distress.
Conclusion: Patient dyads’ preferences on the timing of initiating advance care planning and life-sustaining treatments withdrawal were found to be consistent. Taiwanese people’s medical decision-making is heavily influenced by cultural characteristics including relational autonomy and filial piety. The findings could inform the clinical practice and policy in the wider Asia–Pacific region.
Background: End-of-life (EOL) conversations are highly important for patients living with life-threatening diseases and for their relatives. Talking about the EOL is associated with reduced costs and better quality of care in the final weeks of life. However, there is therefore a need for further clarification of the actual wishes of patients and their relatives concerning EOL conversations in an acute hospital setting.
Aim: The purpose of this study was to explore the wishes of patients and their relatives with regard to talking about the EOL in an acute hospital setting when living with a life-threatening disease.
Methods: This study is a qualitative study using semi-structured in-depth interviews. A total of 17 respondents (11 patients and six spouses) participated. The patients were identified by the medical staff in a medical and surgical ward using SPICT™. The interview questions were focused on the respondents’ thoughts on and wishes about their future lives, as well as on their wishes regarding talking about the EOL in a hospital setting.
Results: This study revealed that the wish to talk about the EOL differed widely between respondents. Impairment to the patients’ everyday lives received the main focus, whereas talking about EOL was secondary. Conversations on EOL were an individual matter and ranged from not wanting to think about the EOL, to being ready to plan the funeral and expecting the healthcare professionals to be very open about the EOL. The conversations thus varied between superficial communication and crossing boundaries.
Conclusion: The wish to talk about the EOL in an acute hospital setting is an individual matter and great diversity exists. This individualistic stance requires the development of conversational tools that can assist both the patients and the relatives who wish to have an EOL conversation and those who do not. At the same time, staff should be trained in initiating and facilitating EOL discussions.
End of life discussions frequently take place in surgical intensive care units, as a significant number of patients die while admitted to the hospital, and surgery is common during the last month of life. Multiple barriers exist to the initiation of these conversations, including: miscommunication between clinicians and surrogates, a paternalistic approach to surgical patients, and perhaps, conflicts of interest as an unwanted consequence of surgical quality reporting. Goal discordant care refers to the care that is provided to a patient that is incapacitated and that is not concordant to his/her wishes. This is a largely unrecognized medical error with devastating consequences, including inappropriate prolongation of life and non-beneficial therapy utilization. Importantly, hospice and palliative care needs to be recognized as quality care in order to deter the incentives that might persuade clinicians from offering these services.