Background: The prognosis of patients with incurable head and neck cancer (HNC) is a relevant topic. The mean survival of these patients is 5 months but may vary from weeks to more than 3 years. Discussing the prognosis early in the disease trajectory enables patients to make well-considered end-of-life choices, and contributes to a better quality of life and death. However, physicians often are reluctant to discuss prognosis, partly because of the concern to be inaccurate. This study investigated the accuracy of physicians’ clinical prediction of survival of palliative HNC patients.
Methods: This study was part of a prospective cohort study in a tertiary cancer center. Patients with incurable HNC diagnosed between 2008 and 2011 (n = 191), and their treating physician were included. Analyses were conducted between July 2018 and February 2019. Patients’ survival was clinically predicted by their physician =3 weeks after disclosure of the palliative diagnosis. The clinical prediction of survival in weeks (CPS) was based on physicians’ clinical assessment of the patient during the outpatient visits. More than 25% difference between the actual survival (AS) and the CPS was regarded as a prediction error. In addition, when the difference between the AS and CPS was 2 weeks or less, this was always considered as correct.
Results: In 59% (n = 112) of cases survival was overestimated. These patients lived shorter than predicted by their physician (median AS 6 weeks, median CPS 20 weeks). In 18% (n = 35) of the cases survival was correctly predicted. The remaining 23% was underestimated (median AS 35 weeks, median CPS 20 weeks). Besides the differences in AS and CPS, no other significant differences were found between the three groups. There was worse accuracy when predicting survival closer to death: out of the 66 patients who survived 6 weeks or shorter, survival was correctly predicted in only eight (12%).
Conclusion: Physicians tend to overestimate the survival of palliative HNC patients. This optimism can result in suboptimal use of palliative and end-of-life care. The future development of a prognostic model that provides more accurate estimates, could help physicians with personalized prognostic counseling.
BACKGROUND: Patients have a 'need to know' (instrumental need) and a 'need to feel known' (affective need). During consultations with patients with limited health literacy (LHL) in the palliative phase of their disease, both the instrumental and the affective communication skills of healthcare providers are important. The study aims to explore instrumental and affective communication between care providers and LHL patients in the palliative phase of COPD or cancer.
METHODS: In 2018, consultations between LHL patients in the palliative phase of cancer or COPD and their healthcare providers were video-recorded in four hospitals in the Netherlands. As there was no observation algorithm available for this setting, several items were created to parameterize healthcare providers' instrumental communication (seven items: understanding, patient priorities, medical status, treatment options, treatment consequences, prognosis, and information about emotional distress) and affective communication (six items: hope, support, reassurance, empathy, appreciation, and emotional coping). The degree of each item was recorded for each consultation, with relevant segments of the observation selected and transcribed to support the items.
RESULTS: Consultations between 17 care providers and 39 patients were video-recorded and analyzed. Care providers primarily used instrumental communication, most often by giving information about treatment options and assessing patients' care priorities. Care providers assessed patients' understanding of their disease less often. The patients' prognosis was not mentioned in half the consultations. Within the affective domain, the care providers did provide support for their patients; providing hope, reassurance, empathy, and appreciation and discussing emotional coping were observed less often.
CONCLUSIONS: Care providers used mostly instrumental communication, especially treatment information, in consultations with LHL patients in the palliative phase of cancer or COPD. Most care providers did not check if the patient understood the information, which is rather crucial, especially given patients' limited level of health literacy. Healthcare providers did provide support for patients, but other expressions of affective communication by care providers were less common. To adapt the communication to LHL patients in palliative care, care providers could be less wordy and reduce the amount of information, use 'teach-back' techniques and pay more attention to affective communication.
Introduction : Les personnes atteintes de cancer et vivant à domicile sont de plus en plus en nombreuses. Les proches aidants sont des acteurs importants auprès de la personne malade. Ils sont confrontés, à ce titre, aux douleurs cancéreuses sévères de leur proche. La douleur est l’un des symptômes les plus fréquents en cancérologie, souvent insuffisamment soulagée. L’objectif de cette étude était de mieux connaître la perception qu’ont les proches aidants de leur rôle à domicile, particulièrement vis-à-vis de la douleur liée au cancer et de ses traitements.
Méthode : Une étude qualitative a été menée au moyen d’entretiens semi-dirigés auprès de proches aidants de patients atteints d’un cancer en phase palliative spécifique ou symptomatique et présentant des douleurs nécessitant l’administration d’opioïdes. Les thèmes explorés ont été la communication, l’anticipation, la coordination, l’accompagnement et l’adaptation.
Résultats : Douze entretiens ont été réalisés. La plupart des proches aidants disent se rendre disponibles pour le confort du patient, la surveillance des symptômes et l’usage des opioïdes. Ces derniers sont sources de nombreux questionnements. En outre, les proches aidants se sentent responsables de tout faire et de s’organiser pour faire face à la douleur. Enfin, ils se considèrent comme les mieux placés pour soutenir au quotidien le patient, tant pour les aspects pratiques que socio-affectifs. Les professionnels de santé, en particulier les infirmiers libéraux, sont des éléments importants sur lesquels ils peuvent s’appuyer.
Discussion : L’enjeu pour les proches aidants est de conforter leur rôle dans le soulagement des douleurs du malade à domicile. Communiquer, coordonner les différents acteurs et participer aux prises de décision sont les moyens d’y parvenir mais ces fonctions sont variables dans le temps. Il convient de trouver l’équilibre dans la charge qui leur incombe. Cela invite les professionnels à être attentifs à leurs besoins en proposant une aide flexible et adaptée à chaque situation.
Background: Despite evidence showing that goals of care (GOC) conversations increase the likelihood that patients facing a serious illness receive care that is concordant with their wishes, only a minority of at-risk patients receive the opportunity to engage in such conversations.
Objective: The Preventing Readmissions through Effective Partnerships—Communication and Palliative Care (PREP-CPC) intervention was designed to increase the frequency of GOC conversations for hospitalized patients facing serious illness.
Methods: The PREP-CPC employed a sequential, multicohort design using a yearlong mentored implementation approach to support nonpalliative care health-care professionals at participating hospitals to implement quality improvement projects focused on GOC conversations.
Results: Over the 3-year study period, 134 clinicians from 29 hospital teams were trained to facilitate GOC conversations. After the kickoff conference, participants reported improvements in their confidence in facilitating GOC conversations. The hospital teams then instituted site-specific pilot interventions to promote GOC conversations, identifying essential elements required for ongoing improvement. Since projects varied by hospital, results did as well, but reported positive outcomes included increased GOC conversations, increased Practitioner Orders for Life-Sustaining Treatment form completion rates, new screening and documentation methods, and increased support from leadership.
Conclusions: The PREP-CPC pilot successfully engaged a diverse set of hospitals to participate in quality improvement collaborative promoting primary palliative care and more frequent GOC conversations. This initiative revealed several lessons that should guide future interventions.
OBJECTIVE: The aims of the study were to examine patients' experiences of end-of-life (EOL) discussions and to shed light on patients' perceptions of the transition from curative to palliative care.
METHODS: This study was based on a qualitative methodology; we conducted semi-structured interviews with advanced cancer patients admitted to the palliative care unit (PCU) of the Medical University of Vienna. Interviews were recorded digitally and transcribed verbatim. Data were analyzed based on thematic analysis, using the MAXQDA software.
RESULTS: Twelve interviews were conducted with patients living with terminal cancer who were no longer under curative treatment. The findings revealed three themes: (1) that the medical EOL conversation contributed to the transition process from curative to palliative care, (2) that patients' information preferences were ambivalent and modulated by defense mechanisms, and (3) that the realization and integration of medical EOL conversations into the individual's personal frame of reference is a process that needs effort and information from different sources coming together.
CONCLUSIONS: The results of the present study offer insight into how patients experienced their transition from curative to palliative care and into how EOL discussions are only one element within the disease trajectory. Many patients struggle with their situations. Therefore, more emphasis should be put on repeated offers to have EOL conversations and on early integration of aspects of palliative care into the overall treatment.
OBJECTIVES: Family carers (FCs) of nursing home (NH) residents are best placed to notice deteriorations that signal impending death in their relative, which can open a conversation with healthcare professionals (HCPs) about adjusting the care plan. We explored contributors to bereaved FCs' decision to transition towards palliative-oriented care for their relatives in NHs.
METHODS: This qualitative descriptive study used a phenomenological design. Thirty-two bereaved FCs across 13 Italian NHs completed semi-structured interviews. Additional data were collected on NH referrals to palliative care services (PCS) in the 6 months before study start and treatments provided in the last week of life. Content analysis with a combined inductive and deductive approach was applied to identify codes and fit them into an a priori framework. When codes did not fit, they were grouped into new categories, which were finally gathered into themes.
RESULTS: FCs reported four types of "trigger events" that made them doubt that their relative would recover: (1) physical deterioration (e.g., stopping eating/walking or swallowing problems); (2) social confirmation (e.g., confirming their relative's condition with friends); (3) multiple hospitalizations; and (4) external indicators (e.g., medical examinations by external consultants). A "resident-centered environment" helped FCs recognize trigger events and "raise awareness of the possibility of death"; however, the "need for reassurance" was pivotal to a "gradual transition towards palliative-oriented care". When participants did not recognize the trigger event, their relative continued to receive curative-oriented care. NHs that referred residents to PCS discussed palliative-oriented care more frequently with FCs, had a lower nurse-to-resident and nurse aide-to-resident ratio, and administered more palliative-oriented care.
SIGNIFICANCE OF RESULTS: Trigger events represent an opportunity to discuss residents' prognosis and are the starting point for a gradual transition towards palliative-oriented care. Adequate staffing, teamwork, and communication between FCs and healthcare professionals contribute to a sensitive, timely shift in care goals.
There are many additional considerations when treating older adults with cancer, especially in the context of palliative care. Currently, radiation therapy is underutilised in some countries and disease sites, but there is also evidence of unnecessary treatment in other contexts. Making rational treatment decisions for older adults necessitates an underlying appraisal of the person's physiological reserve capacity. This is termed 'frailty', and there is considerable heterogeneity in its clinical presentation, from patients who are relatively robust and suitable for standard treatment, to those who are frail and perhaps require a different approach. Frailty assessment also presents an important opportunity for intervention, when followed by Comprehensive Geriatric Assessment (CGA) in those who require it. Generally, a two-step approach, with a short initial screening, followed by CGA, is advocated in geriatric oncology guidelines. This has the potential to optimise care of the older person, and may also reverse or slow the development of frailty. It therefore has an important impact on the patient's quality of life, which is especially valued in the context of palliative care. Frailty assessment also allows a more informed discussion of treatment outcomes and a shared decision-making approach. With regards to the radiotherapy regimen itself, there are many adaptations that can better facilitate the older person, from positioning and immobilisation, to treatment prescriptions. Treatment courses should be as short as possible and take into account the older person's unique circumstances. The additional burden of travel to treatment for the patient, caregiver or family/support network should also be considered. Reducing treatments to single fractions may be appropriate, or alternatively, hypofractionated regimens. In order to enhance care and meet the demands of a rapidly ageing population, future radiation oncology professionals require education on the basic principles of geriatric medicine, as many aspects remain poorly understood.
Background: Being next-of-kin to someone with cancer requiring palliative care involves a complex life situation. Changes in roles and relationships might occur and the next-of-kin thereby try to adapt by being involved in the ill person’s experiences and care even though they can feel unprepared for the care they are expected to provide. Therefore, the aim of this study was to develop a classic grounded theory of next-of-kin in palliative cancer care.
Method: Forty-two next-of-kin to persons with cancer in palliative phase or persons who had died from cancer were interviewed. Theoretical sampling was used during data collection. The data was analysed using classic Grounded Theory methodology to conceptualize patterns of human behaviour.
Results: Constructing stability emerged as the pattern of behaviour through which next-of-kin deal with their main concern; struggling with helplessness. This helplessness includes an involuntary waiting for the inevitable. The waiting causes sadness and frustration, which in turn increases the helplessness. The theory involves; Shielding, Acknowledging the reality, Going all in, Putting up boundaries, Asking for help, and Planning for the inescapable. These strategies can be used separately or simultaneously and they can also overlap each other. There are several conditions that may impact the theory Constructing stability, which strategies are used, and what the outcomes might be. Some conditions that emerged in this theory are time, personal finances, attitudes from extended family and friends and availability of healthcare resources.
Conclusions: The theory shows the complexities of being next-of-kin to someone receiving palliative care, while striving to construct stability. This theory can increase healthcare professionals’ awareness of how next-of-kin struggle with helplessness and thus generates insight into how to support them in this struggle.
Introduction: De nombreuses études sur la communication insuffisante et la qualité de vie altérée des patients atteint de bronchopneumopathie chronique obstructive (BPCO) amènent à conclure que leur prise en charge palliative reste à améliorer. L’objectif de cette étude était de réaliser un état des lieux des perceptions et des pratiques de soins palliatifs en pneumologie pour les patients atteints de BPCO.
Méthodes: Un questionnaire « Google Form » a été transmis aux pneumologues via l’annuaire de la Société de pneumologie de langue française de 2017.
Résultats: Au total, 294 réponses ont été reçues, 287 ont été analysées ; 81,6 % des pneumologues identifiaient une phase palliative chez le patient BPCO. Lorsqu’elle n’était pas identifiée, la première raison évoquée (68,8 %) était la difficulté à définir le moment à partir duquel débute une prise en charge palliative. Les aspects de la démarche palliative les plus fréquemment problématiques pour les participants étaient : la discussion des conditions de décès et l’impression que le patient BPCO soit peu demandeur d’information. Près d’un tiers des pneumologues recueillaient les souhaits concernant la réanimation et l’intubation orotrachéale pour 61 % à 100 % des patients qu’ils estimaient les plus graves.
Conclusion: L’incertitude du moment auquel débuter des soins palliatifs et la communication sont les principaux obstacles à la démarche palliative chez le patient BPCO. Le développement d’outils standardisés aiderait à lever ces principaux freins.
Background: Many deaths in Norway occur in medical wards organized to provide curative treatment. Still, medical departments are obliged to meet the needs of patients at the end of life. Here, we analyse the electronic patient record regarding documentation of the transition from curative to palliative care (i.e. the ‘turning point’). Considering the consequences of these decisions for patients, they have received surprisingly little attention from researchers. This study aims to investigate how the patient record denotes reasons for the shift from curative treatment to palliation and how texts involve voices of the patient and their families.
Methods: The study comprised excerpts from electronic patient records retrieved from medical wards in three urban hospitals in Norway. We executed a retrospective analysis of anonymized extracts from 16 electronic patient records, searching for documentation on the transition from curative to palliative care.
Results: In the development of the turning point, the texts usually shift from statements about the patient’s clinical status and technical findings to displaying uncertainty and openness to negotiation with different textual voices. This shift may represent a need to align or harmonize the attitudes of colleagues, family, and patient towards the turning-point decision. The patient’s voice is mostly absent or reported only briefly when, in their notes, nurses gave an account of the patient’s opinion. None of the physicians’ notes provided a detailed account of patient attitudes, wishes, and experiences.
Conclusion: In this article, we have analysed textual representations of patient transitions from curative to end-of-life care. The ‘reality’ behind the text has not been our concern. As the only documentation left, the patient record is an adequate basis for considering how patients are estimated and cared for in their last days of life.
Les causes de rupture du maintien au domicile de personnes en fin de vie sont souvent liées à l’épuisement des proches et au sentiment d’insécurité. L’objectif de cette étude est de connaître les attentes envers le médecin généraliste (MG) de l’aidant principal d’une personne en phase palliative avancée au domicile. Il s’agit d’une étude qualitative sur la base de dix entretiens semi-directifs menés avec un guide d’entretien auprès de proches de personnes décédées. Les enregistrements ont fait l’objet d’une analyse de contenu. Les principales attentes envers le MG concernent sur le plan technique, un ajustement des thérapeutiques ; sur le plan organisationnel, une disponibilité importante ainsi qu’un lien entretenu avec les différents intervenants et les structures notamment de soins palliatifs ; sur le plan relationnel, une écoute et une information sur l’évolution de la maladie ; sur le plan décisionnel, le respect de la volonté du patient. Les résultats sont discutés à partir de trois concepts adaptés au MG, à savoir la capacité d’adaptation de sa pratique et de son savoir-être, l’anticipation des situations d’urgence et de l’évolution de la maladie, et enfin l’assurance d’une continuité des soins qui passe notamment par leur permanence et leur coordination. Les moyens dont dispose le MG paraissent insuffisants pour assurer le maintien à domicile devant la charge que représente un patient en phase palliative avancée. La diffusion de la démarche palliative au domicile et l’optimisation de l’interprofessionnalité auprès des personnes en fin de vie au domicile et de leurs proches sont à développer. L’enjeu est le respect de la demande du patient de mourir à son domicile.
La souffrance est une entité universelle, multidimensionnelle, mais aussi unique et personnelle, paradoxalement sous-diagnostiquée, alors qu’elle est omniprésente dans notre pratique en milieu hospitalier. Le but de cet article est de proposer au lecteur quelques pistes pour l’exploration et l’identification de la souffrance des proches de patients en situation palliative, et surtout quelques outils d’accompagnement et de soutien.
Ces recommandations de la Haute Autorité de Santé ont pour objectifs de mieux définir les modalités d'utilisation des traitements médicamenteux, en particulier hors AMM, en situation palliative et phase terminale chez l'adulte :
- pour l'antalgie des douleurs rebelles ou la prévention des douleurs rebelles provoquées ;
- pour la sédation, qu'elle soit proportionnée ou profonde et continue maintenue jusqu'au décès ;
- y compris, le cas échéant, les modalités spécifiques au domicile.
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The majority of patients with esophagus cancer have advanced-stage disease without curative options. For these patients, treatment is focused on improving symptoms and quality of life. Despite this, little work has been done to quantify symptom burden for incurable patients. We describe symptoms using the Edmonton Symptom Assessment System (ESAS) among esophagus cancer patients treated for incurable disease. This retrospective cohort study linked administrative datasets to prospectively collected ESAS data of non-curatively treated adult esophagus cancer patients diagnosed between January 1, 2009 and September 30, 2016. ESAS measures nine common cancer-related symptoms: anxiety, depression, drowsiness, lack of appetite, nausea, pain, shortness of breath, tiredness, and impaired well-being. Frequency of severe symptoms (score = 7/10) was described by month for the 6 months from diagnosis for all patients and by treatment type (chemotherapy alone, radiotherapy alone, both chemotherapy and radiotherapy, and best supportive care). A sensitivity analysis limited to patients who survived at least 6 months was performed to assess robustness of the results to proximity to death and resulting variation in follow-up time. Among 2,989 esophagus cancer patients diagnosed during the study period and meeting inclusion criteria, 2,103 reported at least one ESAS assessment in the 6 months following diagnosis and comprised the final cohort. Patients reported a median of three (IQR 2–7) ESAS assessments in the study period. Median survival was 7.6 (IQR 4.1–13.7) months. Severe lack of appetite (53.1%), tiredness (51.1%), and impaired well-being (42.7%) were the most commonly reported symptoms. Severe symptoms persisted throughout the 6 months after the diagnosis. Subgroup analysis by treatment showed no worsening of symptoms over time in those treated by either chemotherapy alone, or both chemotherapy and radiation. Results followed a similar pattern on sensitivity analysis. Patients diagnosed with incurable esophagus cancer experience considerable symptom burden in the first 6 months after diagnosis and the frequency of severe symptoms remains high throughout this period. Patients with this disease require early palliative care and psychosocial support upon diagnosis and support throughout the course of their cancer journey.
BACKGROUND: As palliative care increasingly takes place in patients' homes, perceptions of security among patients in the late palliative phase and their relatives are important.
AIM: To describe and compare patient-relative dyads regarding their perceptions of security in palliative homecare, including the perceived security of the actual care given to the patients, as well as the subjective importance of that care.
METHODS: A cross sectional questionnaire study including 32 patient-relative dyads was conducted in an urban municipality in Norway. Patients were in a late palliative phase and received palliative homecare. Each patient proposed one relative. Data were collected using a modified version of the Quality from the Patients' Perspective instrument (QPP), which focuses on security and comprises three dimensions: medical-technical competence, identity-orientation approach and physical-technical conditions. Context-specific scales containing four aspects (competence, continuity, coordination/cooperation, availability) were added. The instrument contains two response scales; perceived reality (PR) and subjective importance (SI). Data were analysed by descriptive statistics, Chi-squared test, T-test and Wilcoxon's signed rank test.
RESULTS: Patients had high mean scores on the PR-scale for the sense of security in palliative homecare in the dimensions of medical-technical competence and physical-technical conditions. There were three low mean scores on the PR-scale: the aspect of continuity from patients and the aspects of continuity and coordination/cooperation from relatives. The patients scored the SI scale statistically significantly higher than the PR scale in the identity-orientation approach dimension and in the aspect of continuity, while relatives did so in all dimensions and aspects. The intra-dyadic patient-relative comparisons show statistically significant lower scores from relatives on the PR-scale in the dimensions of medical-technical competence, physical-technical conditions, identity-orientation approach and the aspect coordination/cooperation.
CONCLUSIONS: There are several statistically significant differences between patients and relatives' perceptions of security in the palliative homecare received (PR) compared with the subjective importance of the care (SI) and statistically significant differences in the patient-relative dyads in PR. A relatively mutual sense of security in palliative homecare is important for patient-relative dyads, as relatives often provide care and act as patients' spokespersons. What they assess as important can guide the development of palliative homecare.
Purpose: The transition from active cancer treatment to palliative care often results in a shift in drug risk-benefit assessment which requires the deprescribing of various medications. Deprescribing in palliative cancer patients can benefit patients by reducing their pill burden, decrease potential side effects, and potentially decrease healthcare costs. In addition, a change in patients’ goals of care (GOC) necessitates the alteration of drug therapy which includes both deprescribing and the addition of medications intended to improve quality of life. Depending on a patient’s GOC, a medication can be considered as inappropriate.
Objectives: Primary: Comparison between potentially inappropriate medications (PIMs) prior to the palliative care consult (PCC) versus after the PCC. Secondary: Association between PIMs and GOC.
Methods: The study was a 1-year retrospective database review. The study included cancer patients seen by the PCC team at the University of Alberta Hospital. The OncPal guidelines were used to identify and determine the number of PIMs prior to the PCC and after the PCC.
Results: The reduction in PIMs prior to PCC versus after the PCC was statistically significant (p value < 0.001), demonstrating the PCC has a positive significant impact on deprescribing PIMs. For our secondary outcome, an overall decrease in PIMs was observed with the changes of GOC. The strength of the correlations was low (r < 0.1), and the p value was 0.056.
Conclusion: This study shows the positive impact a PCC has on deprescribing and reveals the importance of using guidelines for deprescribing in palliative cancer patients.
BACKGROUND: Despite evidence that referral to pediatric palliative care reduces suffering and improves quality of life for patients and families, many clinicians delay referral until the end of life. The purpose of this article is to provide a conceptual model for why clinical teams delay discussing palliative care with parents.
DISCUSSION: Building on a prior model of parent regoaling and relevant research literature, we argue for a conceptual model of the challenges and facilitators a clinical team might face in shifting from a restorative-focused treatment plan to a plan that includes palliative aspects, resulting in a subspecialty palliative care referral. Like patients and families, clinicians and clinical teams may recognize that a seriously ill patient would benefit from palliative care and shift from a restorative mindset to a palliative approach. We call this transition "clinician regoaling". Clinicians may experience inhibitors and facilitators to this transition at both the individual and team level which influence the clinicians' willingness to consult subspecialty palliative care. The 8 inhibitors to team level regoaling include: 1) team challenges due to hierarchy, 2) avoidance of criticizing colleagues, 3) structural communication challenges, 4) group norms in favor of restorative goals, 5) diffusion of responsibility, 6) inhibited expression of sorrow, 7) lack of social support, 8) reinforcement of labeling and conflict. The 6 facilitators of team regoaling include: 1) processes to build a shared mental model, 2) mutual trust to encourage dissent, 3) anticipating conflict and team problem solving, 4) processes for reevaluation of goals, 5) sharing serious news as a team, 6) team flexibility.
CONCLUSIONS: Recognizing potential team level inhibitors to transitioning to palliative care can help clinicians develop strategies for making the transition more effectively when appropriate.
INTRODUCTION: Hospice care (HC) in the Netherlands is available for patients with life expectancies <3 months. Little is known about expectations of patients who might be in need of HC. This study aims to gain insight into expectations of patients regarding HC in order to ameliorate HC to become driven by patient needs.
DESIGN: A generic qualitative study, using semistructured interviews and thematic analysis, is performed in the Netherlands from January to June 2018. A purposeful sample of 13 participants was drawn.
RESULTS: Participants expected hospice admission only when the burden became unbearable and a home death cannot be reached. Participants expected a homely atmosphere, where one can continue the life lived at home as much as possible. Participants supposed empathic professional caregivers, capable of providing appropriate care. The general practitioner is expected to stay involved in the care process due to the mutual trust. Medical and daily care are required to be provided by competent professionals, where volunteers are expected to provide supportive care. All caregivers are supposed to provide a listening ear and "being there" for participants. Social care and spiritual care are generally projected to be private matters, unless it is requested.
CONCLUSIONS: Patients in the palliative phase who might be in need of HC have specific expectations. Perceptions of HC in the public domain should be nuanced in response to these expectations, and information provision on HC should be improved. Then, expectations could be met to make HC more driven by patient needs and future oriented.
In Sweden, patients in early palliative stages of illness are cared for in primary care and often offered home care. Many are older and at risk for malnutrition, but little is known about their symptom burden and nutritional problems. This cross-sectional study divided older patients in home care into those with and without risk for malnutrition and compared symptom burden in the 2 groups. Participants were patients in Stockholm County (n = 121) in early palliative stages of disease cared for at home by primary care professionals from 10 health-care centers. The Mini Nutritional Assessment (MNA) was used to identify risk for malnutrition. Symptoms and/or nutritional status in patients with and without risk were assessed with the Functional Assessment of Anorexia/Cachexia Therapy (FAACT), Patient-Generated Subjective Global Assessment Short Form (PG-SGA), and Edmonton Symptom Assessment System (ESAS). Forty-two percent of the patients were at risk for malnutrition (MNA). Appetite (P = .012), tiredness (P = .003), and anxiety (P = .008) were worse in these patients than in those without risk (ESAS; significance level, P = .015). Patients at risk were also more concerned about how thin they looked (P = .006), agreed more strongly that their family or friends were pressuring them to eat (P = .000; FAACT; significance level, P = .029), had a higher symptom burden (P = .005), had lower physical activity (P = .000), and more lost weight over time (P = .032; PG-SGA; significance level, P = .040). This study adds a more detailed picture of the symptom burden in older patients at risk for malnutrition. Such information is needed to identify risk for malnutrition earlier and improve patients’ health.