Dementia is the leading cause of death in England and Wales, but traditionally it has not been considered a terminal or life-limiting condition. As a result, little significance may be placed on advance care planning (ACP) for people with dementia. Evidence suggests that most patients with advanced dementia have often not been given an opportunity to complete an advance care plan and have not had conversations with their families about their wishes and preferences at the end of life. This article reports on a literature review that aimed to explore the evidence on the introduction of ACP in achieving preferred place of care or death for people living with dementia, and reducing carer burden. The literature review found that ACP discussions have several benefits for people with dementia and their family carers, but that various factors can support or hinder such discussions. It concludes that these people and their families need to plan for end of life and suggests that ACP can increase the likelihood of achieving their preferred place of care and death and reducing decisional burden for carers.
IMPORTANCE: In the Kilimanjaro region of Tanzania, there are no advance care planning (ACP) protocols being used to document patient preferences for end-of-life (EoL) care. There is a general avoidance of the topic and contemplating ACP in healthcare-limited regions can be an ethically complex subject. Nonetheless, evidence from similar settings indicate that an appropriate quality of life is valued, even as one is dying. What differs amongst cultures is the definition of a 'good death'.
OBJECTIVE: Evaluate perceptions of quality of death and advance EoL preparation in Moshi, Tanzania.
DESIGN: 13 focus group discussions (FGDs) were conducted in Swahili using a semi-structured guide. These discussions were audio-recorded, transcribed, translated, and coded using an inductive approach.
SETTING: Kilimanjaro Christian Medical Centre (KCMC), referral hospital for northern Tanzania.
PARTICIPANTS: A total of 122 participants, including patients with life-threatening illnesses (34), their relatives/friends (29), healthcare professionals (29; HCPs; doctors and nurses), and allied HCPs (30; community health workers, religious leaders, and social workers) from KCMC, or nearby within Moshi, participated in this study.
FINDINGS: In characterizing Good Death, 7 first-order themes emerged, and, of these themes, Religious & Spiritual Wellness, Family & Interpersonal Wellness, Grief Coping & Emotional Wellness, and Optimal Timing comprised the second-order theme, EoL Preparation and Life Completion. The other first-order themes for Good Death were Minimal Suffering & Burden, Quality of Care by Formal Caregivers, and Quality of Care by Informal Caregivers.
INTERPRETATION: The results of this study provide a robust thematic description of Good Death in northern Tanzania and they lay the groundwork for future clinical and research endeavors to improve the quality of EoL care at KCMC.
BACKGROUND: Evaluation of palliative care services is crucial in order to ensure high quality care and to plan future services in light of growing demand. There is also an acknowledgement of the need to better understand patient experiences as part of the paradigm shift from paternalistic professional and passive patient to a more collaborative partnership. However, while clinical decision-making is well-developed, the science of the delivery of care is relatively novel for most clinicians. We therefore introduce the Trajectory Touchpoint Technique (TTT), a systematic methodology designed using service delivery models and theories, for capturing the voices of palliative care service users.
METHODS: We used design science research as our overarching methodology to build our Trajectory Touchpoint Technique. We also incorporated a range of kernel theories and service design models from the wider social sciences. We developed and tested our Trajectory Touchpoint Technique with palliative care patients and their families (n = 239) in collaboration with different hospices and hospital-based palliative care providers (n = 8).
RESULTS: The Trajectory Touchpoint Technique is user-friendly, enables systematic data collection and analysis, and incorporates all tangible and intangible dimensions of palliative care important to the service user. These dimensions often go beyond clinical care to encompass wider aspects that are important to the people who use the service. Our collaborating organisations have already begun to make changes to their service delivery based on our results.
CONCLUSIONS: The Trajectory Touchpoint Technique overcomes several limitations of other palliative care evaluation methods, while being more comprehensive. The new technique incorporates physical, psychosocial, and spiritual aspects of palliative care, and is user-friendly for inpatients, outpatients, families, and the bereaved. The new technique has been tested with people who have a range of illnesses, in a variety of locations, among people with learning disabilities and low levels of literacy, and with children as well as adults. The Trajectory Touchpoint Technique has already uncovered many previously unrecognised opportunities for service improvement, demonstrating its ability to shape palliative care services to better meet the needs of patients and their families.
BACKGROUND: Studies have shown gaps in prognostic understanding among patients with cancer. However, few studies have explored patients' perceptions of their treatment goals versus how they perceive their oncologist's goals, and the association of these views with their psychological distress.
METHODS: We conducted a cross-sectional study of 559 patients with incurable lung, gastrointestinal, breast, and brain cancers. The Prognosis and Treatment Perception Questionnaire was used to assess patients' reports of their treatment goal and their oncologist's treatment goal, and the Hospital Anxiety and Depression Scale was used to assess patients' psychological symptoms.
RESULTS: We found that 61.7% of patients reported that both their treatment goal and their oncologist's treatment goal were noncurative, whereas 19.3% reported that both their goal and their oncologist's goal were to cure their cancer, 13.9% reported that their goal was to cure their cancer whereas their oncologist's goal was noncurative, and 5% reported that their goal was noncurative whereas their oncologist's goal was curative. Patients who reported both their goal and their oncologist's goal as noncurative had higher levels of depression (B=0.99; P=.021) and anxiety symptoms (B=1.01; P=.015) compared with those who reported that both their goal and their oncologist's goal was curative. Patients with discordant perceptions of their goal and their oncologist's goal reported higher anxiety symptoms (B=1.47; P=.004) compared with those who reported that both their goal and their oncologist's goal were curative.
CONCLUSIONS: One-fifth of patients with incurable cancer reported that both their treatment goal and their oncologist's goal were to cure their cancer. Patients who acknowledged the noncurative intent of their treatment and those who perceived that their treatment goal was discordant from that of their oncologist reported greater psychological distress.
Background: Information routinely collected during a palliative care consultation request may help predict the level of complexity of that patient encounter.
Objectives: We examined whether patient and consultation characteristics, as captured in consultation requests, are associated with the number of unmet palliative care needs that emerge during consultation, as an indicator of complexity.
Design: We performed a retrospective cohort analysis of palliative care consultations.
Setting: We analyzed quality-of-care data from specialty palliative care consultations contained in the Quality Data Collection Tool of the Global Palliative Care Quality Alliance from 2012 to 2017.
Measurements: Using 13 point-of-care assessments of quality of life, symptoms, advance care planning, and prognosis, we created a complexity score ranging from 0 (not complex) to 13 (highest complexity). Using multivariable linear regression, we examined the relationships of consultation setting and patient characteristics with complexity score.
Results: Patients in our cohort (N = 3121) had an average complexity score of 6.7 (standard deviation = 3.7). Female gender, nonwhite race, and neurological (e.g., dementia) and noncancer primary diagnosis were associated with increased complexity score. The hospital intensive care unit, compared with the general floor, was associated with higher complexity scores. In contrast, outpatient and residence, compared with the general floor, were associated with lower complexity scores.
Conclusion: Patient, disease, and care setting factors known at the time of specialty palliative care consultation request are associated with level of complexity, and they may inform teams about the right service provisions, including time and expertise, required to meet patient needs.
BACKGROUND/AIM: Previous studies have shown discrepancies between patient's desired and actual death place. As planning of family support and involvement of palliative home care teams seem to improve the chance to meet patients preferences, geographical availability of specialized palliative home care could influence place of death.
PATIENTS AND METHODS: Data of patients diagnosed and deceased between January 2011 until December 2014 with lung, brain, colorectal, breast and prostate cancer was collected from Swedish national registers and multiple regression analyses were performed.
RESULTS: Patients with lung, brain, colorectal, and prostate cancer who resided in rural municipalities had a higher likelihood of dying at home than dying in hospital settings, compared to those who lived in urban areas.
CONCLUSION: Patients in Sweden, with the exception of breast cancer patients, have a higher likelihood of home death than inpatient hospital death when residing in rural areas compared to when residing in urban areas.
BACKGROUND: Ideas of patient involvement are related to notions of self-determination and autonomy, which are not always in alignment with complex interactions and communication in clinical practice.
AIM: To illuminate and discuss patient involvement in routine clinical care situations in nursing practice from an ethical perspective.
METHOD: A case study based on an anthropological field study among patients with advanced cancer in Denmark.
ETHICAL CONSIDERATIONS: Followed the principles of the Helsinki Declaration.
FINDINGS: Two cases illustrated situations where nurses refused patient involvement in their own case.
DISCUSSION: Focus on two ethical issues, namely 'including patients' experiences in palliative nursing care' and 'relational distribution of power and knowledge', inspired primarily by Hannah Arendt's concept of thoughtlessness and a Foucauldian perspective on the medical clinic and power. The article discusses how patients' palliative care needs and preferences, knowledge and statements become part of the less significant background of nursing practice, when nurses have a predefined agenda for acting with and involvement of patients. Both structurally conditioned 'thoughtlessness' of the nurses and distribution of power and knowledge between patients and nurses condition nurses to set the agenda and assess when and at what level it is relevant to take up patients' invitations to involve them in their own case.
CONCLUSION: The medical and institutional logic of the healthcare service sets the framework for the exchange between professional and patient, which has an embedded risk that 'thoughtlessness' appears among nurses. The consequences of neglecting the spontaneous nature of human action and refusing the invitations of the patients to be involved in their life situation call for ethical and practical reflection among nurses. The conditions for interaction with humans as unpredictable and variable challenge nurses' ways of being ethically attentive to ensure that patients receive good palliative care, despite the structurally conditioned logic of healthcare.
BACKGROUND: Respect for autonomy is a paramount principle in end-of-life ethics. Nevertheless, empirical studies show that decision-making, exclusively focused on the individual exercise of autonomy fails to align well with patients' preferences at the end of life. The need for a more contextualized approach that meets real-life complexities experienced in end-of-life practices has been repeatedly advocated. In this regard, the notion of 'relational autonomy' may be a suitable alternative approach. Relational autonomy has even been advanced as a foundational notion of palliative care, shared decision-making, and advance-care planning. However, relational autonomy in end-of-life care is far from being clearly conceptualized or practically operationalized.
MAIN BODY: Here, we develop a relational account of autonomy in end-of-life care, one based on a dialogue between lived reality and conceptual thinking. We first show that the complexities of autonomy as experienced by patients and caregivers in end-of-life practices are inadequately acknowledged. Second, we critically reflect on how engaging a notion of relational autonomy can be an adequate answer to addressing these complexities. Our proposal brings into dialogue different ethical perspectives and incorporates multidimensional, socially embedded, scalar, and temporal aspects of relational theories of autonomy. We start our reflection with a case in end-of-life care, which we use as an illustration throughout our analysis.
CONCLUSION: This article develops a relational account of autonomy, which responds to major shortcomings uncovered in the mainstream interpretation of this principle and which can be applied to end-of-life care practices.
BACKGROUND: Palliative needs in older patients are often not timely identified. The Surprise Question (SQ) 'would I be surprised if this patient died in the next year?' is a well-researched tool that could aid in this effort. Most studies thus far involved physicians or specialist nurses, however the predictive value of the SQ when used by general nurses caring for hospitalized older patients is unknown.
OBJECTIVES: To assess the predictive value of the SQ when used by general nurses and student nurses, in determining one year mortality in acutely hospitalized older patients.
DESIGN: Observational cohort study with an one year follow-up.
SETTING: One academic and one regional hospital in the Netherlands.
PARTICIPANTS: Patients >=70 years acutely hospitalized for at least 48 hours.
METHODS: Registered nurses and student nurses answered the SQ with 'No' (a positive SQ), 'Yes' or 'Don't know'. Data on student nurses was analysed separately. The sensitivity, specificity, negative- and positive predictive values were calculated. Furthermore, logistic regression was performed to determine the odds of death.
RESULTS: 66 registered nurses answered the SQ for 252 patients of whom 77 (30.6%) died in the year after inclusion. Respectively, 44%, 14% and 22% died within the 'No', 'Yes' and 'Don't know' group. 85% of patients who died during admission or in the first three months post-discharge were identified. The sensitivity and specificity were 76.7% and 56.6%. The positive and negative predictive values were 43.7% and 84.6 %. Compared to persons in whom the SQ was answered with yes, a no answer was associated with an 4.7 times increased odds of dying in the next 12 months (odds ratio 4.71, 95% CI 2.43-9.12, p<0.001). Additionally, 20 student nurses answered the SQ about 73 patients; sensitivity and specificity were 46.7% and 72.1%, with a positive and negative predictive value of 53.8% and 66.0% respectively.
CONCLUSION: The usability of the Surprise Question in predicting 12-month mortality in older acutely admitted patients is limited, due to the high false positive rate. The SQ when used by non-specialized nurses identifies vulnerable patients with an increased mortality risk and can be used as a first step in assessing a patients' palliative needs, but has limited use as a single criterion for referral to specialist palliative care.
BACKGROUND: Research on the patient experience of receiving palliative care across a number of settings is increasing, but the majority of these investigations are situated within the context of developed countries. There is limited research from resource-limited countries, especially with regard to patients with cancer who receive hospice care. The present study explored the lived experience of attending hospice care facilities in South Africa to develop a bottom-up understanding from the perspectives of patients themselves.
METHODS: A qualitative cross-sectional study was designed to examine how patients experienced receiving hospice care We conducted in-depth, semi-structured interviews with thirteen, purposively selected patients living with terminal cancer and receiving in-patient or day care palliative services from a hospice organisation in South Africa. We used inductive thematic analysis to analyse the data.
RESULTS: We identified three themes that reflected a process of transformation that was experienced by participants during their engagement with the hospice services. The first theme describes participants' initial reluctance to be linked to the hospice as a result of the stereotypic perceptions of hospice as being associated with death and dying. The second theme presents the perceived positive impact on patients' physical and psychosocial wellbeing which resulted from the highly valued interactions with staff and other patients as well as patients' engagement with creative activities. The final theme delineates the transformation of hospice into a second 'family' and 'home' and the restoration of an identity that expands beyond the 'sick' role.
CONCLUSIONS: Receiving hospice care that sensitively attends to patients' psychosocial and physical needs helps people to re-create a sense of homeliness within the world, re-orient themselves toward a meaningful life and re-configure their relationship with self. Patient experience of receiving hospice care in South Africa does not appear dissimilar to that reported by patients in resource-rich countries, suggesting underlying commonalities. There is a need for raising awareness and educating the public about what palliative care can offer to those in need. Public health campaigns could help reduce the stigma attached to palliative care, deflect negative perceptions, and communicate the benefits for patients, families and communities in culturally sensitive ways.
Le respect de l’autonomie du patient est essentiel. Il peut rédiger des directives anticipées en vue d’une situation où il ne pourrait plus s’exprimer. Actuellement, peu de personnes les ont rédigées. Nous avons réalisé une étude sur la faisabilité de la mise en place systématique des directives anticipées chez des patients hémodialysés. Cette étude prospective monocentrique a été menée dans un centre d’hémodialyse ambulatoire en 4 étapes : un questionnaire remis aux soignants ; la sélection puis l’information des patients ; la rédaction assistée des directives anticipées par les patients intéressés ; l’évaluation des causes de non-participation. Les soignants connaissent mal le dispositif et ont des réticences : le manque de connaissances médicales du patient, l’angoisse générée par la discussion sur la fin de vie. Cinquante-six patients (51,6 %) ont été inclus et ont reçu les informations. Neuf d’entre eux ont souhaité rédiger leurs directives anticipées sur un formulaire adapté, huit les ont finalisées (7,4 % de la population initiale). La majorité souhaitait une limitation thérapeutique. Vingt-neuf patients ayant reçu l’information n’ont pas souhaité les rédiger, les raisons étant : ils se sentent bien ou pensent que leurs proches prendraient les bonnes décisions. Dix-huit patients sont sortis du centre pendant l’étude. Le développement des directives anticipées nécessite l’information et la formation des soignants, ainsi que l’accompagnement des patients. Peu de patients sont allés au bout de la démarche. La limite de la « compétence » du patient à décider pour lui est difficile à définir. Le rôle du médecin est central pour l’accompagner.
Being given a new diagnosis, living with serious illness, going through the dying process, and grieving all clearly will have a large impact on a patient’s emotional and psychiatric health. For Physician Assistants working in diverse settings, including primary care, oncology, cardiology, and other specialties, fluency in psychiatric issues in the seriously ill or dying patient is a necessity to providing holistic care. The Physician As-sistant has the opportunity to identify psychiatric issues and be proactive about a team-based approach to therapeutic interventions. Many patients appropriate for palliative care can have a psychological overlap in how they face disease, cope with treatments, interact with family, and ultimately view death. In the health care setting, there can be a tendency to separate the physical symptoms of disease and treatments; however, they are intimately intertwined with the mental, psychological,and spiritual aspects of care. Mental health impacts not only the individual patient but also caregivers and families of those with serious illness
Background: Advance care planning (ACP) facilitates identification and documentation of patients’ treatment preferences. Its goal aligns with that of palliative care – optimizing quality of life of seriously ill patients. However, concepts of ACP and palliative care remain poorly recognized in Chinese population. This study aims at exploring barriers to ACP from perspective of seriously ill patients and their family caregivers.
Methods: This is a qualitative study conducted in a Palliative Day Care Centre of Hong Kong between October 2016 and July 2017. We carried out focus groups and individual interviews for the seriously ill patients and their family caregivers. A semi-structured interview guide was used to explore participants’ experiences and attitudes about ACP. Qualitative content analysis was adopted to analyze both manifest content and latent content.
Results: A total of 17 patients and 13 family caregivers participated in our study. The qualitative analysis identified four barriers to ACP: 1) limited patients’ participation in autonomous decision making, 2) cognitive and emotional barriers to discussion, 3) lack of readiness and awareness of early discussion, and 4) unprepared healthcare professionals and healthcare system.
Conclusions: Participations of seriously ill patients, family caregivers and healthcare workers in ACP initiation are lacking respectively. A series of interventions are necessary to resolve the barriers.
Background: Spiritual care allows palliative care patients to gain a sense of purpose, meaning and connectedness to the sacred or important while experiencing a serious illness. This study examined how Australian patients conceptualise their spirituality/religiosity, the associations between diagnosis and spiritual/religious activities, and views on the amount of spiritual support received.
Methods: This mixed-methods study used anonymous semistructured questionnaires, which included the Functional Assessment of Chronic Illness Therapy-Spiritual Scale-12 (FACIT-SP-12) and adapted and developed questions examining religion/spirituality’s role and support.
Results: Participants numbered 261, with a 50.9% response rate. Sixty-two per cent were affiliated with Christianity and 24.2% with no religion. The mean total FACIT-SP-12 score was 31.9 (SD 8.6). Patients with Christian affiliation reported a higher total FACIT-SP-12 score compared with no religious affiliation (p=0.003). Those with Christian and Buddhist affiliations had higher faith subscale scores compared with those with no religious affiliation (p<0.001). Spirituality was very important to 39.9% and religiosity to 31.7% of patients, and unimportant to 30.6% and 39.5%, respectively. Following diagnosis, patients prayed (p<0.001) and meditated (p<0.001) more, seeking more time, strength and acceptance. Attendance at religious services decreased with frailty (p<0.001), while engagement in other religious activities increased (p=0.017). Patients who received some level of spiritual/religious support from external religious/faith communities and moderate to complete spiritual/religious needs met by the hospitals reported greater total FACIT-SP-12 spirituality scores (p<0.001).
Conclusion: Respectful inquiry into patients spiritual/religious needs in hospitals allows for an attuned approach to addressing such care needs while considerately accommodating those disinterested in such support.
The study objective was to explore the characteristics of rural general practice which exemplify optimal end-of-life (EOL) care from the perspective of people diagnosed with cancer, their informal carers and general practitioners (GPs); and the extent to which consumers perceived that actual EOL care addressed these characteristics. Semi-structured telephone interviews were conducted with six people diagnosed with cancer, three informal carers and four GPs in rural and regional Australia. Using a social constructionist approach, thematic analysis was undertaken. Seven characteristics were perceived to be essential for optimal EOL care: (1) commitment and availability, (2) building of therapeutic relationships, (3) effective communication, (4) psychosocial support, (5) proficient symptom management, (6) care coordination and (7) recognition of the needs of carers. Most GPs consistently addressed these characteristics. Comprehensive EOL care that meets the needs of people dying with cancer is not beyond the resources of rural and regional GPs and communities.
Background: Patients with end-stage liver disease awaiting liver transplantation (LT) are seriously ill and experience fluctuating periods of clinical decompensation. Discussion of a patient’s advance care planning (ACP) wishes early in their dynamic disease course is critical to providing value-aligned care while awaiting LT. We aimed to evaluate current ACP documentation and assess readiness to engage in ACP in this population.
Methods: We conducted a retrospective study of adults undergoing LT evaluation from January 2017 to June 2017 and assessed characteristics associated with documentation using logistic regression. We then administered a survey to LT candidates from March 2018 to May 2018 to determine self-reported readiness to engage in ACP (range 1 = not at all ready to 5 = very ready).
Results: Among 170 LT candidates, median (interquartile range) age was 58 (53–65), 65% were men, MELDNa was 15 (11–21), and Child–Pugh A/B/C were 33/38/29%. Nine percent reported completing ACP prior to LT evaluation, but 0% had legal ACP forms or end-of-life wishes documented in the medical record. A durable power of attorney (DPOA) was discussed with 10%. In univariable analysis, white race (OR 4.16, p = 0.03) and female sex (OR 3.06, p = 0.04) were associated with ACP documentation, but Child–Pugh score and MELDNa were not. Of the 41 LT candidates who completed the ACP survey, 93% were ready to appoint a DPOA and 85% were ready to discuss end-of-life care.
Conclusion: There is a paucity of ACP documentation and identification of DPOA among LT candidates, despite patients reporting readiness to complete ACP and appoint a DPOA. These results reveal an opportunity for tools to facilitate discussions around ACP between clinicians, patients, and their caregivers.
Introduction: The transplant waiting list exceeds the number of organs available. One means of increasing the organ pool is to broaden potential donors to include those with chronic diseases.
Research Questions: The study tested the effectiveness of using peer mentors to encourage individuals on dialysis to enroll on an organ donor registry.
Design: Dialysis units were pair-matched by size and racial composition and then randomized to one of 2 interventions: meetings with a peer mentor (experimental intervention) or organ donation mailings (control). Peer mentors were trained to discuss organ donation with individuals on dialysis during in-person meetings at dialysis units. The primary outcome was verified registration in the state’s donor registry.
Results: After adjusting for age, gender, race, income, and education and accounting for correlation within the dialysis center, there was a significant intervention effect. Among individuals in the intervention group, the odds of enrolling (verified) on the donor registry were 2.52 times higher than those in the control group.
Discussion: The use of peer mentors to discuss donating organs after death with individuals on dialysis can increase enrollment on a donor registry. Dispelling myths about chronic illness and donation can counter widely held misconceptions and help persons make an informed choice about end-of-life decisions and present an opportunity to increase the number of organs and tissues available for transplant.
Objective: To engage young adults (18–35 years of age) with life-limiting neuromuscular conditions, their parents, and health and community providers in the development of a public health approach to palliative care. A public health approach protects and improves health and wellness, maximises the quality of life when health cannot be restored and improves the quality, scope and accessibility of age-appropriate care and services.
Methods: Group concept mapping (GCM) was used to determine the most important priorities for these young adults. GCM involves three district phases: (1) brainstorming ideas, (2) sorting and rating ideas based on level of importance and (3) analysing and interpreting concepts maps. Online software was used to collect information for phases 1 and 2 and develop concept maps. In phase 3, a face-to-face workshop, participants analysed and interpreted the concept maps. The combination of online and face-to-face research activities offered the needed flexibility for participants to determine when and how to participate in this research.
Results: Through this three-phase patient engagement strategy, participants generated 64 recommendations for change and determined that improvements to programming, improvements to funding and creating a continuum of care were their most important priorities. Five subthemes of these three priorities and development of the concept map are also discussed.
Conclusion: This research demonstrates the unique perspectives and experiences of these young adults and offers recommendations to improve services to enhance their health and well-being. Further, these young adults were integral in the development of recommendations for system changes to match their unique developmental needs.
Background: Lung cancer has a high impact on both patients and relatives due to the high disease burden and short life expectancy. Previous studies looked into treatment goals patients have before starting a systemic treatment. However, studies on relatives’ perceptions of treatment at the end of life are scarce. Therefore, we studied the perspectives of relatives in hindsight on the achievement of treatment goals and the choice to start treatment for metastatic lung cancer of their loved one.
Methods: we conducted a structured telephone interview study in six hospitals across the Netherlands, one academic and five non-academic hospitals, between February 2017 and November 2019. We included 118 relatives of deceased patients diagnosed with metastatic lung cancer who started a systemic treatment as part of usual care (chemotherapy, immunotherapy or targeted therapy with tyrosine kinase inhibitors (TKIs) and who completed a questionnaire on their treatment goals before the start of treatment and when treatment was finished. We asked the relatives about the achievement of patients’ treatment goals and relatives’ satisfaction with the choice to start treatment. This study is part of a larger study in which 266 patients with metastatic lung cancer participated who started a systemic treatment and reported their treatment goals before start of the treatment and the achievement of these goals after the treatment.
Results: Relatives reported the goals ‘quality of life’, ‘decrease tumour size’ and ‘life prolongation’ as achieved in 21, 37 and 41% respectively. The majority of the relatives (78%) were satisfied with the choice to start a treatment and even when none of the goals were achieved, 70% of the relatives were satisfied. About 50% of relatives who were satisfied with the patients’ choice mentioned negative aspects of the treatment choice, such as the treatment did not work, there were side effects or it would not have been the relatives’ choice. Whereas, 80% of relatives who were not satisfied mentioned negative aspects of the treatment choice. The most mentioned positive aspects were that they tried everything and that it was the patient’s choice.
Conclusion: The majority of relatives reported patients’ treatment goals as not achieved. However, relatives were predominantly satisfied about the treatment choice. Satisfaction does not provide a full picture of the experience with the treatment decision considering that the majority of relatives mentioned (also) negative aspects of this decision. At the time of making the treatment decision it is important to manage expectations about the chance of success and the possible side effects of the treatment.
Deactivation of an implantable cardioverter-defibrillator (ICD) is a critical issue in the advance care planning (ACP) of ICD recipients; however, related perspectives have rarely been explored. Thus, this study aimed to provide an initial investigation of ICD recipients’ perceived susceptibility and barriers/benefits regarding ACP and/or advance directives (ADs), and associations of these modifiable factors with preferences for end-of-life life-sustaining treatments (LSTs) (cardiopulmonary resuscitation (CPR), ventilator support, hemodialysis, and hospice care). Using a descriptive correlational design, 48 ICD recipients (age, 50.1 years; male, 85.4%) completed survey questionnaires. “No burden on family” was the most highly valued (59.1%), followed by “comfortable death” (20.4%), and both (11.4%). LST preference was 43.8% for ventilator support, 45.8% for both hemodialysis and hospice care, and 54.2% for CPR. Perceived susceptibility to having unexpected end-of-life experiences increased the likelihood of preference for aggressive LSTs, with preferences increasing by 15% for CPR, 17% for ventilator support, and 23% for hemodialysis. A non-modifiable factor, older age, was the only predictor of increased preference for hospice care (odds ratio = 1.09, p = 0.016). Among the modifiable factors, a higher perceived susceptibility increased the likelihood of aggressive LST preferences. The findings imply that to facilitate informed decisions for LSTs, early ACP discussion could be helpful and enhance these modifiable factors.