Dying Cancer Patients Research Articles

Effects of family-based dignity intervention and expressive writing on anticipatory grief of family caregivers of patients with cancer: a study protocol for a four-arm randomized controlled trial and a qualitative process evaluation

BackgroundFamily caregivers of dying cancer patients are affected by grief experiences and bereavement complications. Several approaches such as psycho-emotional care and an increase in spirituality have been suggested to diminish these complications. However, the knowledge about the effects of family-based dignity intervention and expressive writing on anticipatory grief in family caregivers of dying cancer patients is limited. This is a study protocol describing a hospital-based mixed-methods study on the effects of family-based dignity intervention and expressive writing on anticipatory grief in family caregivers of dying cancer patients.MethodsThis mixed-methods study will be done in an embedded explanatory design with two quantitative and qualitative phases. In the first phase (quantitative), a randomized clinical trial will be done, in which 200 family caregivers of dying cancer patients will be randomly assigned to one of the four groups: family-based single dignity intervention (group 1), expressive writing intervention (group 2), combined family-based single dignity intervention and expressive writing (group 3), and control (group 4). At baseline, 1 week and 2 weeks after the interventions, anticipatory grief will be assessed by a 13-item anticipatory grief scale. After the quantitative phase, the qualitative phase will be conducted through the conventional content analysis approach of Granheim and Lundman, in which an individual semi-structured interview will be taken from participants in the first phase to collect data on their experiences on interventions. Finally, data from the quantitative and qualitative phases will be analyzed and discussed.DiscussionFamily caregivers of dying cancer patients usually experience depression, anxiety, and psychological distress due to isolation and inadequate social support. Psychological interventions such as dignity and expressive writing interventions may help caregivers to obtain a better understanding of themselves and to increase their abilities to cope with caregiving difficulties. Therefore, there is a need for a comprehensive study confirming the effects of mentioned interventions on family caregivers of dying cancer patients.Trial registrationIranian Registry of Clinical Trials (www.irct.ir) identifier: IRCT20210111050010N1. Date of trial registration: Feb 6, 2021. This is the first version of this protocol.

Association between respiratory and heart rate fluctuations and death occurrence in dying cancer patients: continuous measurement with a non-wearable monitor.

The present study aimed to explore the association between impending death and continual changes in respiratory and heart rates measured using a non-wearable monitor every minute for the final 2weeks of life in dying cancer patients. In this longitudinal study, we enrolled patients in a palliative care unit and continuously measured their respiratory and heart rates via a monitor and additionally captured their other vital signs and clinical status from medical records. A dataset was created comprising every 24-h data collected from every-minute raw data, including information from 240days prior to death from 24 patients (345,600 data); each patient's data were measured for 3-14days until death. After confirming the associations between the respiratory and heat rate values on the day of death (n = 24) or other days (2-14days before death, n = 216) and the mean, maximum, minimum, and variance of respiratory and heart rates every 24h by univariate analyses, we conducted a repeated-measures logistic regression analysis using a generalized estimating equation. Finally, the maximum respiratory rate and mean heart rate were significantly associated with death occurring within the following 3days (0-24h, 0-48h, and 0-72h), except for the maximum respiratory rate that occurs within 0-24h. The maximum respiratory rate and mean heart rate measured every minute using a monitor can warn family caregivers and care staff, with the support of palliative care professionals, of imminent death among dying patients at home or other facilities.

Care Associated With Satisfaction of Bereaved Family Members of Terminally Ill Cancer Patients With Dyspnea: A Cross-sectional Nationwide Survey

ContextTerminal dyspnea in dying cancer patients is frequent and distressing, and the impact extends to their families. Families are often involved in providing care for terminal dyspnea. ObjectivesThis study aimed to describe various care strategies for terminal dyspnea in cancer patients hospitalized in palliative care units (PCUs), evaluate families’ satisfaction with care for terminal dyspnea, and explore determinants contributing to families’ satisfaction. MethodsA nationwide, cross-sectional survey was conducted using a self-reported questionnaire among bereaved families of cancer patients who died in PCUs. The questionnaire consisted of questions on the perceptions of care offered to patients with terminal dyspnea and their families, satisfaction with care for terminal dyspnea, family-perceived intensity of terminal dyspnea, use of oxygen, and background data of patients and families. ResultsIn total, 533 participants (response rate = 54%) returned the completed questionnaires, and 231 reported that their loved one had experienced terminal dyspnea. Dedicated and compassionate care was perceived by 60%–89% of the participants as the strategy provided for patients. Care for family members was perceived by 58%–69% of the participants. Perception of dedicated and compassionate care for patients and that of care for family members were significantly associated with high satisfaction (odds ratio, 95% confidence interval: 8.64, 3.85–19.36 and 15.37, 5.00–47.25, respectively). ConclusionDedicated and compassionate care may be the essential part of the care for terminal dyspnea. Dedicated and compassionate care for patients and care for family members have a potential of improving the care satisfaction among family caregivers.

Factors affecting quality of end-of-life hospital care - a qualitative analysis of free text comments from the i-CODE survey in Norway

BackgroundThe ERANet-LAC CODE (Care Of the Dying Evaluation) international survey assessed quality of care for dying cancer patients in seven countries, by use of the i-CODE questionnaire completed by bereaved relatives. The aim of this sub study was to explore which factors improve or reduce quality of end-of-life (EOL) care from Norwegian relatives’ point of view, as expressed in free text comments.Methods194 relatives of cancer patients dying in seven Norwegian hospitals completed the i-CODE questionnaire 6–8 weeks after bereavement; recruitment period 14 months; response rate 58%. Responders were similar to non-responders in terms of demographic details.104 participants (58% spouse/partner) added free text comments, which were analyzed by systematic text condensation.ResultsOf the 104 comments, 45% contained negative descriptions, 27% positive and 23% mixed. 78% described previous experiences, whereas 22% alluded to the last 2 days of life. 64% of the comments represented medical/surgical/oncological wards and 36% palliative care units. Four main categories were developed from the free text comments: 1) Participants described how attentive care towards the practical needs of patients and relatives promoted dignity at the end of life, which could easily be lost when this awareness was missing. 2) They experienced that lack of staff, care continuity, professional competence or healthcare service coordination caused uncertainty and poor symptom alleviation. 3) Inadequate information to patient and family members generated unpredictable and distressing final illness trajectories. 4) Availability and professional support from healthcare providers created safety and enhanced coping in a difficult situation.ConclusionsOur findings suggest that hospitals caring for cancer patients at the end of life and their relatives, should systematically identify and attend to practical needs, as well as address important organizational issues. Education of staff members ought to emphasize how professional conduct and communication fundamentally affect patient care and relatives’ coping.

Caring for cancer patients facing death: nurse's perception and experience.

To know the experiences and perceptions of nurses who care for dying cancer patients. A descriptive, qualitative study, developed in a private hospital in Sao Paulo, with a total of nine nurses, aged between 24 and 46 years old, who participated in a semi-structured interview. Through Bardin's Content Analysis, three categories were highlighted: Death as a natural process and the final stage of the life cycle; Although it is difficult, it is important to get emotionally involved with dying patients and their family; and Reflecting on their experiences in the care of dying patients and their family. The nurses' experiences and perceptions of the death of cancer patients showed the professional's involvement and feelings of anxiety and anguish. Adopting effective strategies to address people who are suffering, in the context of the study, can provide subsidies that will guide clinical practice in health.

Care at the Very End-of-Life: Dying Cancer Patients and Their Chosen Family's Needs.

The majority of cancer deaths in countries such as Australia are predictable and most likely to occur in hospital. Despite this, hospitals remain challenged by providing the best care for this fragile cohort, often believing that care with palliative intent at the very end-of-life is not the best approach to care. Given the importance that dying patients place on excellent symptom control, failing to provide good end-of-life care is likely to be contrary to the wishes of the imminently dying patient and their family. This becomes even more significant when the impact of care on the bereavement outcomes of families is considered. Given the rising numbers of predicable hospital deaths, an urgent need to address this exists, requiring health professionals to be cognisant of specific care domains already identified as significant for both patients and those closest to them in knowledge, care and affection. This non-systematic review’s aims are to summarise the symptoms most feared by people imminently facing death which is defined as the terminal phase of life, where death is imminent and likely to occur within hours to days, or very occasionally, weeks. Further, this paper will explore the incidence and management of problems that may affect the dying person which are most feared by their family. The final section of this work includes a brief discussion of the most significant issues that require attention.

A good death from the perspective of palliative cancer patients.

Although previous research has indicated some recurrent themes and similarities between what patients from different cultures regard as a good death, the concept is complex and there is lack of studies from the Nordic countries. The aim of this study was to explore the perception of a good death in dying cancer patients in Sweden. Interviews were conducted with 66 adult patients with cancer in the palliative phase who were recruited from home care and hospital care. Interviews were analysed using qualitative content analysis. Participants viewed death as a process. A good death was associated with living with the prospect of imminent death, preparing for death and dying comfortably, e.g., dying quickly, with independence, with minimised suffering and with social relations intact. Some were comforted by their belief that death is predetermined. Others felt uneasy as they considered death an end to existence. Past experiences of the death of others influenced participants' views of a good death. Healthcare staff caring for palliative patients should consider asking them to describe what they consider a good death in order to identify goals for care. Exploring patients' personal experience of death and dying can help address their fears as death approaches.

Young clinicians dealing with death: Problems and opportunities.

The formation of a strong bond between patients and therapists can lead to successful treatment outcomes. Yet, little is known about the mechanisms that function to control this relationship. The objective of this case report was to examine the ruptures and repairs in the working alliance between a young therapist and an elderly caregiver, and to suggest ways in which to deal with age-related challenges to such an alliance. In order to examine the ruptures and repairs in a working alliance, this case report reflects on the interdependent relationship among therapist variables, patient variables, and the therapeutic alliance. The clinical experience presented describes a newly educated psychologist's struggles to overcome the challenges in forming a strong working alliance with an elderly dying cancer patient's spouse. The spouse was enrolled in the DOMUS study (Clinicaltrials.gov: NTC01885637), an ongoing randomized controlled trial of a patient-and-caregiver intervention for facilitating the transition from an oncology ward to palliative at-home care, and then bereavement. As part of the DOMUS study, the patient and spouse received a psychological intervention based on existential-phenomenological therapy. A therapist's therapeutic approach to breaking down age-related barriers to communication matters greatly. The existential-phenomenological method of epoché offers a way to effectively address ruptures and repairs in a working alliance, as it enhances the therapist's openness to learning. In addition, the insights of senior supervisors can promote a therapist's openness to learning. In conclusion, the method of epoché benefits the working alliance in several ways, as it enhances personal insight and provides methods for repairing an alliance. The reflections in this paper may be applied to clinical settings in oncology, gerontology, and palliative care, which are likely to be of great interest to young clinicians experiencing age-related challenges in their daily work.

Legal Aspects of Oncology Care for Dying Patients

Patients with cancer who are approaching the end of their lives, as well as the patients’ families and professional caregivers, often confront difficult decisions regarding the initiation, continuation, withholding, or withdrawal of various forms of medical care. Those clinical choices must be made and implemented within the prevailing legal environment. The legal environment in the United States surrounding and shaping medical decision making and care for dying cancer patients is explored in this chapter. Specific topics addressed include distinguishing living patients from dead bodies, informed consent and refusal, informational confidentiality in medical care, advance health care planning, medical decision making in the absence of advance planning, standards of care and medical malpractice liability, limits on the rights of patients and families, and postmortem rights and responsibilities.

Læring og kompetanseutvikling i kommunehelsetenesta – ein intervjustudie av kreftsjukepleiarar

<p>Learning and competence development in community health service – an interview study of cancer nurses</p><p>The number of cancer patients is expected to increase 30% by 2020. To meet the needs of seriously ill and dying cancer patients the community health service must be strengthened. There is little knowledge about the development of competence in the community health service. The aim of this study was to get more knowledge about competence development of cancer nurses.The study has a phenomenological hermeneutical design. Data was based on eight qualitative interviews with cancer nurses. The content of daily work and the cooperation within the community of practice were found to be important. Experience, theoretical knowledge, expectations and attitudes were of importance in their learning, and this is accomplished in cooperation with others through trust, having enough time and responsibility. It will be a challenge to meet the demands to quality and competence in future cancer care. Employing advanced nurse practitioners can be a resource, strengthening quality, improving nursing and innovation.</p>

Helene Hudson Lecture: Taking an “upstream” approach in the care of dying cancer patients: The case for a palliative approach

Les progres au niveau de la technologie et des pharmacotherapies font en sorte que les patients atteints de cancers malins vivent plus longtemps qu’auparavant. Cependant, la plupart d’entre eux sont loin d’atteindre l’esperance de vie de la population generale. L’adoption d’une « approche palliative » est une innovation qui pourrait promouvoir a la fois une meilleure planification de fin de vie et la fourniture de soins de meilleure qualite en fin de vie. Pourtant, dans une bonne partie du monde occidental, cette orientation en amont est rare. La tendance a dispenser des soins palliatifs tard dans la trajectoire de la maladie a entraine de nombreuses difficultes au niveau des soins prodigues aux personnes atteintes d’un cancer avance. Cet article decrit une initiative de recherche infirmiere—l’iPANEL (Initiative pour une approche palliative en soins infirmiers : donnees probantes et leadership)—dont l’objectif est de generer des donnees probantes qui faciliteront l’integration d’une approche palliative dans les soins aux personnes atteintes de conditions chroniques reduisant l’esperance de vie. Les infirmieres en oncologie ont un role important a jouer dans la facilitation d’une approche palliative, puisqu’elles peuvent transformer les facons dont les patients atteints de cancer sont traites dans notre systeme de sante.

Multiple sclerosis and palliative care - perceptions of severely affected multiple sclerosis patients and their health professionals: a qualitative study

BackgroundIn Germany, patients severely affected by Multiple Sclerosis (MS) do not routinely come into contact with palliative care, even if possibly beneficial. This study was aimed at investigating how severely affected MS patients and their health professionals perceive palliative care to determine how to better approach these patients in Germany about this topic.Methods15 patients feeling severely affected by MS and 23 health professionals experienced with MS patients (3 social workers, 7 nurses, and 13 physicians) in both in-/outpatient and rural/ urban settings participated in this qualitative study in Germany. Semi-structured interviews (patients, health professionals) and focus groups (health professionals) were conducted, transcribed verbatim and analyzed via qualitative content analysis.ResultsMS patients were mostly unfamiliar with the term “palliative care” or were aware of it only in relation to cancer and dying. They did not view it as relevant to themselves. Health professionals predominantly associated palliative care with dying cancer patients, if familiar with it at all. Most physicians doubted its relevance for neurological patients and denied MS as a cause of death. Nevertheless, most felt they already offered their patients sufficient palliative care, or thought that it could not meet MS patients’ complex needs. Most nurses and social workers recognized deficits in existing care structures and regarded palliative care as an opportunity for MS patients.ConclusionMS patients’, and health professionals’ restricted, death-associated awareness of palliative care leads to discomfort, fear or rejection of this idea. Therefore, a defined concept of palliative care emphasizing opportunities for severely affected MS patients and considering early integration should be spread throughout the German MS community as an additional layer of support for this patient group.

Evidence and values: paying for end-of-life drugs in the British NHS

In January 2009, Britain's National Institute for Health and Clinical Excellence (NICE), following a very public debate triggered by its decision, six months earlier, provisionally to rule against the adoption by the National Health Service (NHS) of an expensive drug for advanced renal cancer, introduced a new policy for evaluating pharmaceuticals for patients nearing the end of their lives. NICE's so-called end-of-life (EOL) guidance for its Committees effectively advises them to deviate from the Institute's threshold range and to value the lives of (mostly) dying cancer patients more than the lives of those suffering from other, potentially curable, chronic or acute conditions. This article tells the story of the EOL guidance. Through looking at specific EOL decisions between 2009 and 2011 and the reactions by stakeholders to these decisions and the policy itself, it discusses the triggers for NICE's EOL guidance, the challenges NICE faces in implementing it and the policy's putative implications for the future role of NICE in the NHS, especially in the context of value-based reforms in the pricing and evaluation of pharmaceuticals, currently under consideration.

Use of home telehealth in palliative cancer care: a case study

We conducted a mixed-methods case study to explore the perceptions of family caregivers and palliative cancer patients of home telehealth, and their experience with it. The intervention in the randomized controlled trial from which study participants were selected consisted of specialist nurses available 24 hours per day who communicated with patients and families using videophones, with optional remote monitoring. Qualitative data were collected from interviews with five patient/caregiver dyads and seven bereaved family caregivers, direct observation and nursing documentation. Quantitative data were collected from computerized nursing documentation and analyzed for patterns of use. During the study there were 255 contacts, including videophone, telephone or face-to-face visits, between tele-nurses and families. Overall the patients, family caregivers and tele-nurses felt that home telehealth enabled family caregiving, citing increased access to care, and patient and family caregiver reassurance. Pain management was the most common reason for initiating contact with the nurse, followed by emotional support. Concerns included lack of integration of services, inappropriate timing of the intervention and technical problems. The case study confirmed the importance of timely and accessible care for a group of clinically vulnerable, dying cancer patients and their family caregivers.

Clinical signs of dying in cancer patients: A prospective longitudinal observational study.

e19528 Background: The fundamental process of dying has not been well characterized. We determined the frequency, onset, accuracy and likelihood ratio (LR) for various clinical signs in dying cancer patients. Methods: We systematically documented 100 signs/symptoms on consecutive advanced cancer patients admitted to palliative care units at MD Anderson Cancer Center (MDA) in the United States and Barretos Cancer Hospital (BCH) in Brazil every 12 hours from admission to death/discharge in 2010/2011. We analyzed the serial data from death backwards using generalized estimating equations for decedents, and calculated the accuracy and LRs for all patients. Results: 203/357 (MDA 52, BCH 151) patients died, and had the following characteristics: average age 58 (range 18-88), female 49%, Caucasian 76%, median admission length 6(Q1-Q3 4-9) days. The average palliative performance scale decreased from 50% to 20% (P<0.001). The frequency of pulselessness of radial artery (PRA), decreased urine output, respiration with mandibular movement (RMM), inability to close eye lids (EL), death rattle, vocal cord grunting, Cheyne Stokes and nasolabial drooping increased as death approached (P<0.001 for all), with high LR+ for impending death (Table 1). Presence of PRA, RMM and EL had a high specificity (100%), positive predictive value (99.4%) and LR+ (13) for death in 3 days. Conclusions: We identified highly specific cardiovascular, respiratory and neuromuscular signs associated with imminent death. [Table: see text]

Beyond Good Intentions and Patient Perceptions: Competing Definitions of Effective Communication in Head and Neck Cancer Care at the End of Life

Effective communication between dying cancer patients and their health care providers about prognosis and treatment options ensures informed decision making at the end of life. This study analyzed data from interviews with end-stage head and neck cancer patients and their health care providers about communication competence and approaches to communicating about end-of-life issues. Patients rated their oncologists as competent and comfortable discussing end-of-life issues, although few reported discussing specific aspects of end-of-life care. Oncologists viewed giving prognostic information as a process rather than a singular event, and preferred answering patients’ questions as opposed to guiding the discussion. These data reveal subtle disconnects in communication suggesting that patients’ and health care providers’ information needs are not being met.

Suffering and euthanasia: a qualitative study of dying cancer patients’ perspectives

Although intolerable suffering is a core concept used to justify euthanasia, little is known about dying cancer patients' own interpretations and conclusions of suffering in relation to euthanasia. Sixty-six patients with cancer in a palliative phase were selected through maximum-variation sampling, and in-depth interviews were conducted on suffering and euthanasia. The interviews were analyzed using qualitative content analysis with no predetermined categories. The analysis demonstrated patients' different perspectives on suffering in connection to their attitude to euthanasia. Those advocating euthanasia, though not for themselves at the time of the study, did so due to (1) perceptions of suffering as meaningless, (2) anticipatory fears of losses and multi-dimensional suffering, or (3) doubts over the possibility of receiving help to alleviate suffering. Those opposing euthanasia did so due to (1) perceptions of life, despite suffering, as being meaningful, (2) trust in bodily or psychological adaptation to reduce suffering, a phenomenon personally experienced by informants, and (3) by placing trust in the provision of help and support by healthcare services to reduce future suffering. Dying cancer patients draw varying conclusions from suffering: suffering can, but does not necessarily, lead to advocations of euthanasia. Patients experiencing meaning and trust, and who find strategies to handle suffering, oppose euthanasia. In contrast, patients with anticipatory fears of multi-dimensional meaningless suffering and with lack of belief in the continuing availability of help, advocate euthanasia. This indicates a need for healthcare staff to address issues of trust, meaning, and anticipatory fears.

Exploring Hereditary Cancer Among Dying Cancer Patients—A Cross‐Sectional Study of Hereditary Risk and Perceived Awareness of DNA Testing and Banking

Hereditary cancer assessment at the end of life is a relatively unexplored area, but it could be critical for surviving family members. This study explored the prevalence of hereditary cancer among dying cancer patients and assessed patients' perceived awareness of DNA testing and/or banking in a public access hospital. Palliative care patients with cancer from a single institution (or their medical-decision-making surrogates for patients unable to answer for themselves) completed structured interviews. Information was collected through medical records review and structured interviews for 43 dying cancer patients. Information for 9 patients was collected from surrogates. Nine patients (21%, 95% CI = 8.8% to 33.1%) had strong genetic risk. Currently available genetic tests could have addressed this risk for several patients. None had previous genetic counseling, testing or DNA banking. Among strong-risk patients, about half of patients/surrogates had heard/read "almost nothing" about genetic testing (44%) and DNA banking (67%). Perceived genetic awareness was not associated with genetic risk, and neither were sociodemographic characteristics. The proportion of hereditary cancer may be at least as high in the palliative care population as in other clinical settings, but awareness and uptake among patients are low. These conditions are not being recognized upstream and families are losing valuable information.

Caritas, spirituality and religiosity in nurses' coping

The purpose of this qualitative study was to investigate registered nurses' coping processes when working with terminally ill and dying cancer patients, with special focus on religious aspects of coping resources. What religious components can be identified as coping resources in oncology nurses' orienting system and what function has religiosity in the nurse's work? The theoretical reference is care philosophy and the psychology of religion and coping. The material consists of interviews with 15 Swedish registered oncology nurses. The results highlight different dynamic aspects of the nurses' life orientation such as caritas, religiosity, spirituality and atheism and demonstrate that religiosity can have a protective function that facilitates coping, as the nurse has something to turn to. Religious coping dominated by basic trust where prayer is used as a coping strategy may support the nurse.

4255 Pain care of dying cancer patients in Finland

4255 Pain care of dying cancer patients in Finland