Advance care planning and end-of-life care in patients with an implantable cardioverter defibrillator: The perspective of relatives.

BACKGROUND: Little is known about the last phase of life of patients with implantable cardioverter defibrillators and the practice of advance care planning in this population. AIM: To describe the last phase of life and advance care planning process of patients with an implantable cardioverter defibrillator, and to assess relatives' satisfaction with treatment and care. DESIGN: Mixed-methods study, including a survey and focus group study. SETTING/PARTICIPANTS: A survey among 170 relatives (response rate 59%) reporting about 154 deceased patients, and 5 subsequent focus groups with 23 relatives. RESULTS: Relatives reported that 38% of patients had a conversation with a healthcare professional about implantable cardioverter defibrillator deactivation. Patients' and relatives' lack of knowledge about device functioning and the perceived lack of time of healthcare professionals were frequently mentioned barriers to advance care planning. Twenty-four percent of patients experienced a shock in the last month of life, which were, according to relatives, distressing for 74% of patients and 73% of relatives. Forty-two to sixty-one percent of relatives reported to be satisfied with different aspects of end-of-life care, such as the way in which wishes of the patient were respected. Quality of death was scored higher for patients with a deactivated device than those with an active device (6.74 vs 5.67 on a 10-point scale, p = 0.012). CONCLUSIONS: Implantable cardioverter defibrillator deactivation was discussed with a minority of patients. Device shocks were reported to be distressing to patients and relatives. Relatives of patients with a deactivated device reported a higher quality of death compared to relatives of patients with an active device.

Doctors' reports about palliative systemic treatment: A medical record study.

BACKGROUND: Decisions about palliative systemic treatment are key elements of palliative and end-of-life care. Such decisions must often be made in complex, clinical situations. AIM: To explore the content of medical records of patients with advanced non-small cell lung cancer and pancreatic cancer with specific emphasis on doctors' notes about decisions on palliative systemic treatment. DESIGN: Medical record review (2009-2012) of 147 cancer patients containing 276 notes about palliative systemic treatment. We described the proportion of notes/medical records containing pre-specified items relevant to palliative systemic treatment. We selected patients using the nationwide Netherlands Cancer Registry. SETTING: Hospital based. RESULTS: About 75% of all notes reported doctors' considerations to start/continue palliative systemic treatment, including information about the prognosis (47%), possible survival gain (22%), patients' wish for palliative systemic treatment (33%), impact on quality of life (8%), and patient's age (3%). Comorbidity (82%), smoking status (78%) and drinking behaviour (63%) were more often documented than patients' performance status (16%). Conversations with the patient/family about palliative systemic treatment were reported in 49% of all notes. Response measurements and dose adaptations were documented in 75% and 71% of patients who received palliative systemic treatment respectively. CONCLUSION: Medical records provide insight into the decision-making process about palliative systemic treatment. The content and detail of doctors' notes, however, widely varies especially concerning their palliative systemic treatment considerations. Registries that aim to measure the quality of (end-of-life) care must be aware of this outcome. Future research should further explore how medical records can best assist in evaluating the quality of the decision-making process in the patient's final stage of life.

The Prevalence and Associated Distress of Physical and Psychological Symptoms in Patients With Advanced Heart Failure Attending a South African Medical Center.

BACKGROUND: Despite the high prevalence of heart failure in low- and middle-income countries, evidence concerning patient-reported burden of disease in advanced heart failure is lacking. OBJECTIVE: The aim of this study is to measure patient-reported symptom prevalence and correlates of symptom burden in patients with advanced heart failure. METHODS: Adult patients diagnosed with New York heart Association (NYHA) stage III or IV heart failure were recruited from the emergency unit, emergency ward, cardiology ward, general medicine wards, and outpatient cardiology clinic of a public hospital in South Africa. Patients were interviewed by researchers using the Memorial Symptom Assessment Scale-Short Form, a well-validated multidimensional instrument that assesses presence and distress of 32 symptoms. RESULTS: A total of 230 patients (response, 99.1%), 90% NYHA III and 10% NYHA IV (12% newly diagnosed), with a mean age of 58 years, were included. Forty-five percent were women, 14% had completed high school, and 26% reported having no income. Mean Karnofsky Performance Status Score was 50%. Patients reported a mean of 19 symptoms. Physical symptoms with a high prevalence were shortness of breath (95.2%), feeling drowsy/tired (93.0%), and pain (91.3%). Psychological symptoms with a high prevalence were worrying (94.3%), feeling irritable (93.5%), and feeling sad (93.0%). Multivariate linear regression analyses, with total number of symptoms as dependent variable, showed no association between number of symptoms and gender, education, number of healthcare contacts in the last 3 months, years since diagnosis, or comorbidities. Increased number of symptoms was significantly associated with higher age (b = 0.054, P = .042), no income (b = -2.457, P = .013), and fewer hospitalizations in the last 12 months (b = -1.032, P = .017). CONCLUSIONS: Patients with advanced heart failure attending a medical center in South Africa experience high prevalence of symptoms and report high levels of burden associated with these symptoms. Improved compliance with national and global treatment recommendations could contribute to reduced symptom burden. Healthcare professionals should consider incorporating palliative care into the care for these patients.

Awareness of dying: it needs words.

PURPOSE: The purpose of this research is to study to what extent dying patients are aware of the imminence of death, whether such awareness is associated with patient characteristics, symptoms and acceptance of dying, and whether medical records and nurses' and family caregivers' views on patients' awareness of dying agree. METHODS: Nurses and family caregivers of 475 deceased patients from three different care settings in the southwest Netherlands were requested to fill out questionnaires. The two groups were asked whether a patient had been aware of the imminence of death. Also, medical records were screened for statements indicating that the patient had been informed of the imminence of death. RESULTS: Nurses completed questionnaires about 472 patients, family caregivers about 280 patients (response 59%). According to the medical records, 51% of patients had been aware of the imminence of death; according to nurses, 58%; according to family caregivers, 62%. Patients who, according to their family caregiver, had been aware of the imminence of death were significantly more often in peace with dying and felt more often that life had been worth living. Inter-rater agreement on patients' awareness of dying was fair (Cohen's kappa = 0.23-0.31). CONCLUSIONS: Being aware of dying is associated with acceptance of dying, which supports the idea that open communication in the dying phase can contribute to the quality of the dying process. However, views on whether or not patients are aware of the imminence of death diverge between different caregivers. This suggests that communication in the dying phase of patients is open for improvement.

Hydration and symptoms in the last days of life.

OBJECTIVES: At the end of life oral fluid intake is often reduced. Consensus about the most appropriate management for terminally ill patients with limited oral fluid intake is lacking. The objective of this study is to investigate to what extent the amount of fluid intake, preceding and during the dying phase, is related to the occurrence of death rattle and terminal restlessness. METHODS: A multicentre prospective observational study was performed. Data on the occurrence of death rattle and terminal restlessness, fluid intake and opioid use of patients expected to die within a few days or hours were collected. RESULTS: 371 patients were included. Death rattle was reported at least once in 40% (n=149) of patients during the dying phase. Death rattle occurrence was not associated with the amount of fluid intake during the days before dying. Terminal restlessness was reported in 26% of patients (n=96). Terminal restlessness was not associated with a lower amount of fluid intake during the days before dying. Terminal restlessness during the last 24 hours of life was associated with a higher amount of fluid (ie, >250 mL/day) during 48-25 hours before death. CONCLUSIONS: Caution with fluid intake to prevent development of death rattle does not seem to be necessary. Our study suggests that a higher amount of fluid intake during 48-25 hours before death may be associated with the occurrence of terminal restlessness during the last 24 hours of life. These results suggest that actively providing dying patients with artificial fluid may not be beneficial.

Understanding relatives' experience of death rattle.

BACKGROUND: Death rattle is a frequently occurring symptom in the last phase of life. The experience of death rattle of relatives has been found to vary. It is unclear if treatment with medication is useful. The most fitting solution for this symptom is still under debate. AIM: This study aims to better understand the experience of relatives of their loved ones' death rattle. DESIGN: A qualitative interview study with a phenomenological approach was performed. Data were collected through semi-structured interviews which were audio recorded, transcribed and analyzed using qualitative content analysis. PARTICIPANTS: Nineteen family members of 15 patients were interviewed. RESULTS: Most relatives had experienced death rattle as a distressing symptom. Concerns about how long the rattling would last resulted in more distress. Experience of death rattle was less fierce when other symptoms such as pain or dyspnea prevailed. Hearing the sound of death rattle sometimes reminded relatives of previously witnessed dying trajectories, which seemed to increase their current level of distress. The experience of death rattle is not always influenced by the amount and quality of information given about the symptom. CONCLUSION: Death rattle is a stressful symptom and the experience of relatives is influenced by more factors than the sound itself. Communication and information alone seem inefficient to address relatives' distress. The best approach for dealing with this symptom is unclear. Further research needs to show if prophylactically given drugs may be helpful in its prevention.

Can the Dying Phase Be Masked by the Use of Dexamethasone? A Case Report.

Recognition of the dying phase, i.e., the period during which death is expected to occur within hours or days, is important because it enables marking the imminence of death, informing the patient and his relatives, and adjusting care where needed. Careful communication about a patient's limited prognosis prepares patients and their family for impending death and saying goodbye. The authors describe two cases of patients dying a relatively unexpected death in a hospice, which is uncommon in this setting. These unexpected deaths had a severe impact on the relatives and on the professional care team. Both patients used dexamethasone. The authors postulate that there is a relationship between the use of dexamethasone and difficulty in recognizing the dying phase. Dexamethasone can make patients feel better, increase their appetite, and influence the stress response. These effects could mask the signs of impending death, such as "being bedbound," "only drinking sips," and "being subcomatose." Review of the literature yielded no articles that support or reject this hypothesis. Because dexamethasone is used regularly in the palliative phase of a chronic disease, there is a need for further exploration of its effects in the dying phase.

Prevalence, impact, and treatment of death rattle: a systematic review.

CONTEXT: Death rattle, or respiratory tract secretion in the dying patient, is a common and potentially distressing symptom in dying patients. Health care professionals often struggle with this symptom because of the uncertainty about management. OBJECTIVES: To give an overview of the current evidence on the prevalence of death rattle in dying patients, its impact on patients, relatives, and professional caregivers, and the effectiveness of interventions. METHODS: We systematically searched the databases PubMed, Embase, CINAHL, PsychINFO, and Web of Science. English-language articles containing original data on the prevalence or impact of death rattle or on the effects of interventions were included. RESULTS: We identified 39 articles, of which 29 reported on the prevalence of death rattle, eight on its impact, and 11 on the effectiveness of interventions. There is a wide variation in reported prevalence rates (12%-92%; weighted mean, 35%). Death rattle leads to distress in both relatives and professional caregivers, but its impact on patients is unclear. Different medication regimens have been studied, that is, scopolamine, glycopyrronium, hyoscine butylbromide, atropine, and/or octreotide. Only one study used a placebo group. There is no evidence that the use of any antimuscarinic drug is superior to no treatment. CONCLUSION: Death rattle is a rather common symptom in dying patients, but it is doubtful if patients suffer from this symptom. Current literature does not support the standard use of antimuscarinic drugs in the treatment of death rattle.

Symptoms of patients with incurable head and neck cancer: prevalence and impact on daily functioning.

BACKGROUND: There is lack of research on symptoms in patients with head and neck cancer in the palliative phase. The aim of this study was to explore symptom prevalence and the impact of these symptoms on daily functioning in patients with incurable head and neck cancer. Also, discrepancies between patients and family caregivers are described. METHODS: Questionnaires were used to collect data about symptom prevalence (n = 124) and symptom impact (n = 24). RESULTS: We discovered that the symptoms with a high prevalence were fatigue, pain, weakness, trouble with short walks outside, and dysphagia. The symptoms with the greatest impact on daily functioning were dyspnea, voice changes, trouble with short walks outside, anger, and weakness. CONCLUSIONS: Patients with incurable head and neck cancer experience a great number of different symptoms. Focus on these symptoms by health care professionals could further optimize symptom management. In future research, we recommend further validation of the used questionnaires.